Undiagnosed Symptoms Community
Im begging someone to help me with this!
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Im begging someone to help me with this!

I really need help with this i am going out of my mind! ANY suggestions or help would be so welcome!
About 2 years ago now i started feeling like my breathing wasnt right. it felt too shallow like i couldnt take in enough air. Then i started getting very bad headakes every single day and dizziness all day every day too the point i couldnt do anything normal anymore because i was too scared. I went to my doctor and he was baffled and basically just wrote it off. Its been two years now and my health has got continuously worse. every day i experience these symptoms now..
Heart palpitations
'fluttering' in my chest.
Rapid heart beat whenever i move in the slightest.
Dizziness all day every day
Head pain
Pressure in my head like its filled up with something and about to explode
Pains/tingling & numbness in both legs and arms(it varies) And face.
Chest pain
Very out of breath even when just sitting still
And the most recent symtpoms are my ears feeling all blocked and a kind of wave of numbness + tingling (very bad feeling) feeling like its washing through my brain which makes me feel like i cant breath or think at all while it happens (normally lasts about 3-4 seconds) It kind of feels like my brain just cuts out.

I am nearly 18 years old, female, not preganant, a bit underweight.
I have had ALOT of blood tests, thyroid is normal, blood cells are normal, Bp normal, An echocardiogram came back fine, Wore a 7 day ecg monitor which showed my palpitations but the cardiologist said it was ok?? Had a brain MRI scan from the neurologist which he said was 'essentialy normal' Im being sent to a breathing clinic next month but other than this no one seems to know whats going on or how to help. im not sure they even want to!!

Sorry for such a long Question please any help would be SO appreciated!
Dawn
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105 Comments
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875426_tn?1325532016
Have you ever researched dysautonomia?  There is forum on here and there is info on ndrf's (National Dysautonomia Research Foundation) web site (it's an org).   Did they also test your plasma free metaneprhines & catecholamines?  These can be an issue with a rare tumor on an adrenal gland called a pheochromocytoma... however, usually you would have episodes of high BP with that.  But, if you had dysautonomia, the catecholamines and plasma free metanephrines can often have out of range numbers.

  Did they do a separate MRI of pituitary (different from general MRI scan)?  If you have a large enough adenoma, it can cause headache... but they might want to do a complete endocrine testing if they haven't already to see if anything comes back out of the ordinary before ordering it.

Have you looked into fibromyalgia, one of the spectrum of dysautonomia disorders?
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hi thanks you for your reply.
I hadnt ever heard of that untill you just said it then. I looked it up online and ALOT of the sumptoms im feeling come up under that list!
Also im sorry to sound supid but i dont even know what my 'plasma free metanephrines' are so im pretty sure theyve never tested anything like that!

and no i dont think they did a mri of mituitary..just a general one. They only really did that because they could see how distressed i was becoming by it all and realised if they didnt do something id just get worse.

Is this a common thing and how would i go about mentioning this to my doctor? what are the tests for a diagnosis?

Your reply has been brilliant, its nice to know theres still people out there who want to help!

Thanks, dawn.
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I'm not sure which thing you are talking about that you looked up.  Dysautonomia affects a lot of people and there are different ways it affects them.  

Pheochromocytoma is rare, usually benign, but can be deadly if it goes undiagnosed.  Plasma free metanephrines is one of the most sensitive tests to screen for this tumor of an adrenal gland.  It also can show if you have a hyperadrenergic state (which may be being caused by dysautonomia).  If I recall correctly from my reading in the past, it tests the inactive metabolites of your catecholamines- epinephrine (adrenaline)  and norepinephrine (noradrenaline).  

You may want to get your catecholamines (active epineprhine and norepinephrine) tested as well.  I have dysautonomia in the form of postural orthostatic tachycardia syndrome (P.O.T.S.), and nearly always one of these levels is outside the normal range when I am tested.  I am still waiting to see if they will rule out the diagnosis of pheochromoctyoma with me.  But likely, I just have the hyperadrergic form of P.O.T.S..

If you want to get tested for fibromyalgia, you probably would get the best help from a rheumatologist knowledgable about it.  They test "trigger points" to see if you have it.

If they test all the hormones produced by your pituitary and any of them comes outside the normal range, they may be willing to do an MRI scan.  There are however, non-functioning adenomas of the pituitary as well that don't emit hormones.

Regarding your thyroid- did they test just TSH, or did they test T3, T4, and calcitonin as well?
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Thanks for your kind remarks!
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hi thanks for replying again, i looked up Dysautonomia (Which i'd never heard of before) so im sure the doctors have never even considered this. It lists so many of the symptoms i am feeling, But when i was looking up i found that It said quite alot it could be diagnosed through an echocardiogram in some cases..which i had and the cardiologist said was normal. But maybe if i do have this its just not that particular type.

How was you diagnosed with this?

Im going to print of as much infromation as possible and take it into my doctors along with some of your messages which have been so helpful! you certainly seem to know what your talking about.

As for my thyroid test i think it was just the most basic testing TSH. And would a tumour on the glands not show up on a general MRI then?

Thanks so much for helping me with this.
Dawn
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I was diagnosed with Postural Orthostatic Tachycardia Test by means of a "tilt table" test.  It was performed by an electrophysiologist.  When they gave me nitroglycerine and tilted me up a second time, it was too much for my body and I passed out.

  If you haven't already, check the ndrf website (its an org).  They have helpful information and a section where articles are posted.  There is a whole spectrum of disorders that fall into the "dysautonomia" family.  Potsplace is another website (this one's a com) you might check out.  P.O.T.S. is only one form of dysautonomia.  Hypovolomia can be a problem with some people with dysautonomia.

The pituitary gland takes a special MRI separate from a general brain MRI.  
Another thing someone told me to get checked (I'm a migraine sufferer), but I think would show on a general brain MRI is Chiarri malformation.  

If they are willing to do another blood test for the thyroid, I recommend try especially to get T3 checked.  
Don't forget catecholamines and definitely plasma free metanephrines regarding your heart rate!  I wish you well and keep me posted, please!
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ive heard quite alot about tilt tests, what type of specialist/doctor would do this?
I spoke to me doctor today and told him all about it and how exact it was to the symptoms ive been feeling and his answer was 'this is something a neurologist deals with so i think he would of found anything like this especially because your mri results where so good' and that was that.
Im very angry that hes just written it off so easily without even considering it so im not trying to find out if theres any other kind of doctors i could go through about this to maybe have a more firm diagnosis because i want to be SURE its not t hat before my gp wirtes it off.

I am going to look at the website and continue with this, in 2 years ive never found anything so possible that it could be to make me feel this way and im so thankful that you mentioned this to me.

If you have any information at all that you think could help me with this and trying to get tested somehow id be really greatfull.

Thanks so much again, Dawn
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An electrophysiologist cardiologist, not a neurologist, is who would conduct a tilt table test.  You might conduct your own experiment at home.  Lay down flat for 20 minutes, take your pulse at your wrist.  Stand up.  After three minutes, take your pulse again.    If you have an automatic blood pressure cuff, use it for your blood pressure after the 20 minutes of lying down and after the three minutes of standing as well.  Omron makes one that's considered pretty reliable (blood pressure cuff).  Please, let me know the numbers.

I initially was diagnosed with inappropriate sinus tachycardia before I had the tilt table test.  Inappropriate sinus tachycardia can happen even while at rest.  

Did the 7 day holter monitor show sinus tachycardia, supraventicular tachycardia, or ?  Was the GP even willing to test plasma free metanephrines and catecholamines?  What about your T3?  If your blood pressure tends to run low, it might be that your norepinephrine will be high from trying to maintain your blood pressure to keep you from fainting.

It might help with your doctor to take in the articles written by reputable sources online.  Underline the symptoms you have and the type of testing that you want done.  Mayo clinic talks about tilt table testing, for instance.  I don't know if they are known where you live.  Vanderbilt University in Tennessee, USA is doing research and there are articles posted on ndrf website.
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I'm sorry about the typo of your name last post.  

In your many blood tests, have they specifically tested your blood iron level, total iron binding capacity (TIBC), and ferritin levels?  My tachycardia in the past was aggravated by iron deficiency, even when my CBC was normal.  I was having chest pains too.  After an abnormal nuclear test, I was in the ER for tachycardia and chest pain.  They did an angiogram, which came back normal.  Sometime afterward, my internal medicine dr. at the time thought to measure iron, not just CBC.  Found out I was anemic.  He told of a link between iron deficiency and tachycardia.

Nowadays, I'm not anemic, and I still have the orthostatic tachycardia, but the pulse doesn't tend to get quite as high as it did when I was anemic.  
A recent holter monitor for 48 hours showed the highest heart rate being in the 150s.  This was when I got up after sleeping a while.
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hi thanks for the replys, I dont have a blood pressure cuff but i couldnt definately look into getting one.

As for the  day holter monitor they showed me a brief glimpse of my results told me they was 'fine' and that was it. They never went into details or took notice of me when i pointed out my palpitation ON the graph which could be clearly seen.
I did find as much information as possible on the subjects online from various websites and take it to my doctor, and i guess this answers your other question too. he was not willing to test anything basically. He just said the neurologist would have found anything like this and that because my mri scan was fine he highly doubted it..and that was it.

To be honest with you its only recently ive started to take control and tell the doctors that i want to KNOW what there testing me for before that they always seems hesitant to tell me so im not one hundred percent sure if ive pecifically had my blood iron tested, ive been told numouros times that im not anemic so maybe they have maybe they havent.

I get alot of chest pains aswell but i feel all of my symptoms even when im sitting resting not just when i stand up or move so would a tilt test even help?

Also im looking into changing doctors because if my doctor doesnt belive me i dont know how im ever going to get all of this diagnosed and find out what it is.

do you still get symptoms now? and what do you use to treat/help it?
Thanks, dawn
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I would definitely look around for a better doctor who listens and cares about their patients and is not hesitant to be thorough in testing to try to diagnose you.  I think a lot of doctors (from reading posts on a different forum) decide a person is not anemic just because the patient's hemoglobin and hematocrit and red blood cells are all in normal range.  BUT, I'm living proof, that this is not always so.  It is not at ALL uncommon for a menstruating female to have iron deficiency.

If they won't test you, it would be worth it to start taking one iron pill a day, which in the USA, you can get over the counter.  325 mg ferrous sulfate is what you would get.  For best absorption, you would need to take it with at least 250 mg of vitamin C along with it... if vit. C bothers your stomach or gives you mouth sores, try ester-C.   And you don't want to take calcium or eat antiacids to close to taking the iron w/the vitamin C.  If you get constipated from the iron, just be sure and eat enough fiber, and take miralax or something if you need to.  If you take it a few weeks and start to feel better and the tachycardia gets less, you can suspect that you were low in iron.  It takes longer, though, to get your iron stores up with only taking one pill a day.

You could ask your current doctor for ALL your lab records, to take to a doctor for a second opinion and potentially, to make that second opinion doctor, if you are happier with the way they treat you, your new primary care physician.   And I would call the cardiologist and ask them to release to you the hour by hour results of your holter monitor test, along with the final report.  You might need to sign a medical record release form.  Ask them to tell you what kind of tachycardia you were having.  Since they said it was okay, it likely was the sinus tachycardia variety.  In order to be defined as tachycardia, it has to be over 100 beats per minute.

If you don't have a problem where the tachycardia gets worse when you are in an upright position, than the tilt table is likely not for you.  You might want to look more about innappropriate sinus tachycardia.  Since your primary physician seems to think the neurologist would have looked into all of your concerns, including endocrinology related ones, maybe you could call your neurologist and ask them what, if any, blood tests they ran.  (I would do this after you get the records from your current primary care physician and see all the tests they have copies of that were run and if you don't see T3, and other endocrine tests, especially catecholamines and plasma free metanephrines, blood iron and ferritin (iron stores) blood levels, ).  I've been to neurologists for migraines, and frankly, I don't remember them ordering ANY blood tests at all.  

If you had an adrenal tumor called a pheochromocytoma, you would not always have to have high blood pressure, because sometimes the tumor is silent and not putting out high levels of catecholamines.  

You can still have an overactive thyroid and have a normal TSH level... for instance, if you had a "hot" nodule on your thyroid that was emitting higher than normal levels of thyroid hormones causing hyperthyroidism.

Have you had a 24 hour urine collection measuring your sodium output?  This can be an indicator as to whether or not your hypovolemic.

About me, I still have problems with palpitations, which sometimes can rachet up headache pain.  I get short of breath when walking faster than a leisurely gait.  My iron is normal now, because, as my nickname suggests, I no longer have menstruation issues (I had severe endometriosis).  If I've had hot water hitting me (I use a chair) and I reach up, I feel light headed and my vision can start to go.  I don't pass out as some do from dysautonomia (other than the nitroglycerine induced faint on the tilt table test).  If I eat a large meal, or sometimes, I think if I eat certain foods, my tachycardia acts up.  My heart rate is up and down.... see next post for a sampling of my own holter monitor results from this year.

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The cardiologist office pointed out that my average was good.    The highest average I had was 100 beats per minute.  I will give you a sampling of some of the hours of the minimum and maximum of the hour...

The hour          minimum pulse   maximum pulse
  11 AM                      68                    125
   12 PM                     72                    124
      1 PM                    71                    118
       7 PM                   70                    117
       8 PM                    67                   118
       9 PM                    65                    121
       10 PM                   56                    117
sleeping 12 AM             60                     91
          1 AM                  63                     97
sleeping, got up to go to the bathroom with this next one
           2 AM                 60                     148
sleeping, got up later in the morning with the next one
            6 AM                 62                     133
Think I went back to bed, than got up a little later with the next one
             7 AM                 61                      145
The biggest leap in beats per minute came the next morning when I got up from sleeping to go to the bathroom again
              1 AM                 60                      152                  
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Hey, sorry its taken me so long to reply had two head injurys in the last week and concussion so as you can imagine it hasnt helped with how im feeling at all.

The neurologist i've been seeing in the past isnt really a ring up and ask him kind of doctor. I have to be referred by my doctor and have an appointment before i can speak to him..Ive been looking for other neurologists in the are but apparently hes the only one i can see!

I have been definately considering asking for copies of my MRI results and Also as you suggested my 7 day ecg results.Only thing is id need to take these to another specialist for a second oppinion wouldnt i?
Can you request your information through there secreatary do you know?

Also i havent had a 24 hour urine sample and im sure they've only done the basic blood tests for thyroid but i'll look into it.

I looked at your holter results and to be honest without mine i cant really say how likely it is i could be having the same thing as you.

All i know is everyday i feel worse my head pains and dizziness just keeps on coming and i dont know what else i can do to help myself if the doctors wont help me.
Also if i request copys of my medical records + tests do they have to say yes?
Thanks, dawn.
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I'm so sorry you've had two head injuries!  Did that happen because of your physical symptoms?  

Regarding the thyroid, my dad got a book out of the library, and it looks like TSH is a good indicator of what's going on with that.  The only thing I can think of where it might not always show up what's really going on with your thyroid (aside from a pituitary tumor) is if you had a hot nodule or something on the thyroid that was intermittantly putting out high levels of thyroid hormone.

You would ask for the medical records department of your doctor's office.  You might have to fill out a medical record release form.  If you are asking for a copy for your own self, and not to take to a second opinion doctor, they may want to charge for the copying.  But, it would be worth it, I think.  The other thing is, you could ask them to release the records to a specific doctor you have picked out for a second opinon, putting that doctor's address.  Often, places here in the U.S.A. anyway, won't charge for that service.  Even the kinds of doctors who do not want to call patients back, if you leave a message asking about labs, will have their nurse call you back.  And if they are slow about it, you just need to be persistent.... the squeaky wheel tends to get the grease, if you know what I mean.

Have you had your GFR tested lately?  A close relative of mine recently had a low GFR and we pursued it with a doctor visit.  The doctor ordered an ultrasound of the kidneys and found that one of them was small and scarred.  It seems like doctors are doing GFR testing pretty routinely nowadays here.

I hope you are recovering well from your concussion!
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Hi thanks for the well wishes!
The concussion has definately made me feel worse.. the first one i was exhausted and un cordianted dropped something and as i stood up came into contact very hard with a sink. I really hate the feeling of un steadiness i feel all the time even when i dont hit my head im always scared im going to fall over!

Yeah i know what you mean, might have to just keep ringing my neaurologists receptionist about it then, Hes off on leave i think so i cant see him about anything but ill keep trying anyway.

I wouldnt mind paying for the charges of copying a few things like you say it might be worth it! Im just not sure i could find a doctor willing to give me a second opinion. ive got quite alot of nasty symptoms all un explained and i dont know if ill find another doctor even willing to try!

Also what test would they do for GFR? Im not sure ive had one at all!

So if there was something wrong with my pituitary gland it wouldnt show up on a general mri? So what i dont understand is why the neurologist didnt scan for that aswell? Hmmm.

Lately espeically ive noticed ive lost alot of weight, ive never been big but last month i weighed 7ish stone and i now weigh 6 and a half. Surely its not healthy to keep losing that much weight for no reason? Could this tie in with anything e've talked about do you think?

Thank so much, dawn
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If your neurologist did not order endocrine related tests, aside from TSH (more likely to be ordered by an endocrinologist), than he might not think to suspect a pituitary tumor (although some of these tumors can be non-functioning... not giving any endocrine clues that it's there).  But if it's large enough, a pituitary tumor can cause significant headaches and even loss of peripheral vision.  And yes, it requires a separate MRI from a general brain MRI.  Your pituitary is about the size of a pea, and yet its hormones have influence in so many areas.  The hypothalmus, which is close by, I heard on a tv special, is not a normal shaped one in people who get cluster headaches (different from migraines).

You mentioned feeling like you're going to fall over.  This to me sounds off bells in the area of vestibular problems and the ears, because a close family relative (different than the one with the kidney damage) has been tested and found to have vestibular problems.  He feels off balance, particularly in shadowed lighting or on hills.  He has complained before of feeling like he is going to fall over.  You may want to try getting a referral to an ear nose and throat doctor to pursue the ear possibility.  There is special testing to find out if you are having a vestibular problem.


The GFR, or glomerular filtration rate is calculated from blood testing.  If your kidneys don't function properly, it can give rise to a whole host of symptoms that aren't pleasant, because the toxins in the body are not being cleansed out properly by the kidneys.  It may not be your problem, but they should be making sure you have a normal GFR.  My close relative, who had a low one for her age, was told after her small scarred kidney was recently discovered, that this can be a congenital problem or can even develop in childhood.  It's amazing if that was the case with her, that they just discovered it when she's in her 30s.

Please do not forget to pursue getting your blood iron level and ferritin level measured in your blood.  You should also get a T.I.B.C. with those tests, which means total iron binding capacity, which tells how much iron your body is grabbing for use.  If this number is high, your body is saying I need a lot of iron.  You can feel tachycardia, chest pain from the tachycardia, tiredness, lack of energy, light headed- all from being low on iron.  And, if you're like me before my hysterectomy, you can have low iron, even though your CBC or complete blood count, including hemoglobin, hematocrit, and RBC are all in normal range.

Regarding your weight loss, even the tachycardia I think, can cause a little weight loss, because I think it has in the past with me.  Now, I don't know if you have high catecholamines or high plasma free metanephrines, but you really should get these checked.   Hyperthyroidism can cause weight loss, and they really should test your T 4 free and T 3 at the same time as your TSH, since you have lost a lot of weight recently.

Have you noticed any vision changes and or hearing changes in one or both ears?
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I thought that the petuirity controlled alot of our body including temperature i think? which im also having problesm with example..hot flushes for no reason and having to sleep with a fan on full blast in december!

As for the ear thing the first thing my doctor did when i told him about everything was try me on just about every tablet for ear conditions there is and none of them helped and some made me feel worse. I think its more the dizziness combined with the headakes and feeling generally horrible that makes me feel so weak all the time.

And no then after your explanation ive never had GFR tested. Strange how you seem to know much more than most doctors! lol

with the blood iron levels im not sure how to pursue it really, it definately sounds worth it but im pretty sure i know what my doctors answer is going to be before i even suggest it.

I really do need to get those blood tests so i can see which ones of my thyroid and everything have been tested and then i can let you know and hopefully you'll be able to advise me on what i should get done.

And yes about the eye & ear things. My eye sight has been bad since all of this started i get very akey eyes, blurry vision, and quite often find it hard to focus on things. Oo also get alot of floaters in front of my eyes.
And ear is only recently maybe the last month?..Ive been feeling like there very blocked and full and sometimes ake when my head is hurting and occasional popping sounds aswell. Muffled i spose would be the best word to describe how they feel.
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I and others close to me have had many physical problems and have done quite a bit of reading up.  I also went to nursing school when I was a teenager, though I am not a practicing nurse.  

You should notify your doctor about your recent ear symptoms and ask to be referred to an ear, nose and throat specialist (head & neck doctor) /otolaryngologist.
As far as I know, no pills would help a vestibular problem with the ear.  

If I recall correctly, it is the hypothalmus that controls body temperature.  However, if you are having estrogen drops, that can cause hot flashes, even in December.  Tachycardia can also cause what feels like a hot flash.

I started having hot flashes long before I ever had my hysterectomy.  I had tachycardia before my hysterectomy.  Also,  I was told I was not always ovulating (from a couple times of testing from a gyn doctor) and that my brain and ovaries were not communicating with one another.  I spoke to a man who wrote a book about pituitary problems and he thought that part of my history should definitely be considered (a radiologist said I had a microadenoma on my pituitary).  

I still am not sure I've got that tumor (microadenoma) as a second radiologist planted doubt about it in my mind and the hormone level that triggered the ordering of a pituitary MRI was not really an accurate level, due to stimulation of the hormone prior to the blood test.  I am supposed to get another pituitary MRI this summer to see if the alledged microadenoma has grown.
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Correction- there are vestibular problems where pills are recommended.  The person close to me who has the problems doesn't take any for his particular kind.  

Have you been tested with an echocardiogram (sonogram of the heart) for mitral valve prolapse?  Mayo Clinic's website says:

"Mitral valve prolapse symptoms can vary widely from one person to another. They tend to be mild, develop gradually and may include:

A racing or irregular heartbeat (arrhythmia)
Dizziness or lightheadedness
Difficulty breathing or shortness of breath, often when lying flat or during physical activity
Fatigue
Chest pain that's not caused by a heart attack or coronary artery disease"

medicine net (a website that's a com) says:
"Most people with mitral valve prolapse have no symptoms, however, those who do commonly complain of symptoms such as fatigue, palpitations, chest pain, anxiety, and migraine headaches. Stroke is a very rare complication of mitral valve prolapse.

Fatigue is the most common complaint, although the reason for fatigue is not understood. Patients with mitral valve prolapse may have imbalances in their autonomic nervous system, which regulates heart rate and breathing."

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I spoke to a doctor today about my ear problems and i think theyve put it down to the recent head injuries for now. I couldnt get an appointment to see my gp today so ill have to wait to speak to him about the other things.

The things is im not sure i think its anything to do with my ear because although that would make sense for the dizziness it doesnt account for the headakes, Breathing problems, palpitation, Numbness &tingling, chest pains...i dont see how that could be caused by my ears which is what i kept saying to my doctor at the beginning.

I did have an echocardiogram done before i wore the 7day holter but i never saw the results and they ever told me ANYTHING about them what so ever.

Even if its not whats going on with me i really feel that my doctor should be taking me more seriously about the suggestions ive been making as they fit everything im feeling (the Dysautonomia or MVP) but he just wrote it off so maybe i should get another doctors second opinion on that? And maybe try and get hold of copies of my echocardiogram results?

I had my blood pressure taken today and i cant remember exactly but the numbers where arounf 116/63 apparently its lowered since i last had one. And i found somewhere on a site most people who suffer from MVP also have high blood pressure so would this mean it couldnt be whats going on or just that high blood pressure is a possibility?

if you do have the tumour what will they do for you?
And could that be whats been making you feel this way?
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It is possible that you have more than one problem going on.  So, I wouldn't give up on the ear angle causing the off balance feeling and would pursue getting special vestibular testing from an ear, nose and throat doctor to check it out.  Because from your description, it sounded to me like you are always scared you are going to fall over, even if you don't hit your head.  So, didn't you have that feeling before you got the concussion?  If so, you've got to communicate that to your doctor and ask for a referral.

Dysautonomia is a difficult area for doctors and I've read they tend to just try to manage whatever symptoms of it a patient is suffering from at the time.  They really weren't able to do much of anything for my own case.

I know it's confusing with the initials, but I know you had a holter monitor- which involves ECG or EKG tracking- that's electrocardiogram.  Not the same thing as echocardiogram, which uses an ultrasound machine to look at the valves and if they are all functioning properly (including mitral valve).  Have you had that done?

Regarding mitral valve and high blood pressure, that list of symptoms possible that I posted above doesn't mention high blood pressure, so I don't think you have to have it to have a problem with the mitral heart valve.  One of the sites says most people have no symptoms, the other site says symptoms can vary widely from one person to another.

I doubt a tumor is causing my dysautonomia symptoms.  If I have one on the adrenal, a rarity, it's possible that might be a culprit, but it is highly unlikely I have a pheochromocytoma.  The alledged microadenoma (very small tumor) on the small pea sized pituitary is supposed to be followed up by MRI to see if it grows.  

Keep on trying!  I know it can be discouraging, and if the doctor isn't listening, see if you can't find a better one.  Let me know what happens next!
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Thanks, My doctor doesnt seem to like referring me to places for some reason maybe he thinks its a waste of time? im not sure though.

Also yes i had an echocardiogram (Like an ultra sound on my chest) just beore they fitted the holter. But like i said i never heard anything back from them at all about the results.

Yeah im going to keep trying with this, theres not alot else i can do! Your right it is discouraging but i must say its been a big help since youve been posting. To know theres someone out there who belive im feeling this and has been through it all helps so much.

I hope they find out whats going on with your head anyway and fingers crossed there isnt any kind o tumour causing you problems.

Thanks so much for all your help!
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I was looking at an insert to a medication that was brought home and saw something interesting about hyponatremia.  If you had hyponatremia, which is low salt in the blood, it said signs and symptoms can be:
headache, difficulty concentrating, memory impairment, confusion, weakness, and unsteadiness which may lead to falls.  

I wonder if they tested your sodium level in your blood (it would be done with an electrolyte panel).

I have normal blood salt, but after the diagnosis of P.O.T.S., I've had cardiologists encouarage me to eat more salt.  They don't say how much and once, I think I had too much sodium and got a migraine.  I had that 24 hour urine test for sodium, because I asked for it and my result seemed to me to fall right in line with being hypovolemic from what I could tell from an article I was looking at.

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No im sure they havent tested my sodium levels, its definately an interesting thought...i do have quite alot o salt in my diet but you never know whats enough do you so it might be worth mentioning and see what my doctor thinks!

I only saw a crdiologist once and he said the holter was fine and that i should stop smoking and cut out all caffiene from my diet which i said is fine but not that easy as ive  been smoking for so many years. and he said to me normally in young people breathing problems have nothing to do with smoking or caffiene so if you cut it all out for a month and still experience it then come back to me and we'll do some tests coz its likely its something else....

I understand that his job is to tell people to look after themselves but whenever i try to quit smoking or cutting out all caffeine i feel worse! Im so tired all the time from not sleeping because of the way i feel without it i feel terrible so im not sure what to do. Because it seems the only way i can get anywhere is if the cardiologist did some tests (like tilt table) to try and find something that other doctors havent been looking for.
..Its very frustrating knowing that i might know whats causing all of this and the doctors not listening to me!

So if you fall right in line with the salt diet does that mean you have to be treted as if it was too low or normal?
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About palpitations... on nhlbi period nih, a USA gov website, it says:

"Palpitations (pal-pi-TA-shuns) are feelings that your heart is skipping a beat, fluttering, or beating too hard or fast. You may have these feelings in your chest, throat, or neck. They can occur during activity or even when you’re sitting still or lying down."
"Many things can trigger palpitations, including:"
And on the list is the following:
"Caffeine, alcohol, nicotine, and illegal drugs "

So, caffeine and nicotine can both cause palpitations.


Regarding the nicotine in cigarettes... on oral cancer foundation an org website, it says:

"Nicotine affects the brain and central nervous system by changing the level of neurotransmitters and chemicals that regulate mood, learning, alertness and ability to concentrate. Nicotine increases the heart rate, but it constricts the blood vessels, thereby reducing circulation."

"Nicotine is a poison and if taken in large doses could kill a person by paralyzing their breathing muscles. Smokers usually take it in small amounts that the body can quickly break down and get rid of, which is why the nicotine in cigarettes does not kill instantly."

"Nicotine can make new smokers, and regular smokers who get too much of it, feel dizzy or nauseous. The resting heart rate for young smokers increases 2 to 3 beats per minute."

If I feel especially tired, I might drink an electrolyte type drink like gatorade or G2 or I might pour a little salt on my hand and eat it.  I really don't know too much what to do because they give very little guidance in this area.  Plus, sometimes my blood pressure is going too high, likely because of the norepinephrine or epinephrine levels at times going above normal levels.  I think I have the hyperadrenergic form of P.O.T.S..
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Thanks for the info.. I have tried giving up in the past but always gone back to it but i do really need to try again.

Do you find that the heat makes your symptoms feel worse?
And also do you get alot of chest pains at all?
Thanks
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Did you get my PM with the link?  Yes, particularly the heat of a shower or hot bath can make it worse.  I can get light-headed just reaching up above my head & the vision can start to go.  I have had chest pains before with exercise, but lately, my chest pains don't seem to be associated with exercise, so they are probably digestive or musculoskeletal related.  

Plus, I have had a number of cardio tests recently.  I had a couple of valves mildly regurgitating, which the cardio dr. didn't find significant enough to even mention to me (I saw the report, which someone at his office mailed to me).  But the valve regurgitation is mild, so they don't do anything about it unless it gets a lot worse.
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I did get your PM thankyou and had a look at the link, im going to try and cut down smoking gradually untill im completely stopped hopefully =)

I find the heat seems to really make me feel worse especially weather wise.
My breathing feels alot more difficult, worse chest pain and very bad head pains aswell when its hot.

Will you have to keep going for cardio tests to see if theres any change or if anything got worse?

Ive got a breathing clinic appointment on tuesday to test my lung function im not sure what there going to do because my doctor didnt really explain it alot..have you ever had any of them tests?

Thanks for all your support through everything youve really been such a big help.
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I wonder if you take it really slow- like cut down by 1 cigarette every 4-5 days if it would be easier for you?  You know how they tell you to taper off some medications?  And cigarettes have a drug in them, so it seems to make sense if you cut back slowly that the withdrawals would be not as bad.

  I'm so glad you made the decision to try to quit!  As for heat, I didn't think of my headaches, but heat definitely can make my headaches worse.  It like the pain swells up when it's too hot.  I've been basically dismissed from cardiology unless something else comes up.  

The pulmonary tests- I don't know, they probably will have you inhale in a meter that will tell them how strong your lungs are in capacity for taking in air.  They might do a chest x-ray, unless you've already had that done.   I wonder if they will have you exercise and then see how your lungs do?

I appreciate having the opportunity to exchange messages with you.  

With many posts on this site,  I am wondering how many people post their first post on this, then forget all about it, because a number of people never respond back.  
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Dawn: I have read you posts regarding your feeling of unbalance and feeling like you are falling over. Also, as SurgiMenopause has stated, you really need to get another doctor. Any so-called doctor that does not respond to his patient's concerns should not be practicing medicine!!!  Go to one who cares about YOU!!!

Anyway, I have had chronic vertigo (feeling unbalanced and feeling like falling over) for over 20 years and I have still to find a cure, let alone what the cause is. I have tried everything from Ear, Nose and Throat specialists, neurologists, acupuncture, homeopathy (natural cures) and chiropractic. The closest that I hvave gotten to feeling better is with a chiropractor. You may want to check that one out and go to one who is in busines to get you better quickly and not one who keeps you as a long-time patient or one who specializes in accidents. These one are usually out to make money and not necessarily cure you. I am goint to to deal with a neurologist who specializes in bones soon and I am going to see what he says. Otherwise, Meclizine (anti-vert) sometimes will help or you can take the over the counter drug Dramamine those other motion-sickness drugs because they have a tendency to settle down the inner ear by making you a little drowsy.  This is not a good fix but it may help you in the short term.

I hope you get some positive results soon and remember - the doctor is there for YOU not for him/herself. You pay him to do his job so make him do it or go somewhere else!!!

Good luck!
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Yeah thats exactly what i was thinking. so what im going to do is count how many ciggarettes i smoke today and then maybe like you said try and smoke one less everyday and see how it goes!

Ive done peak flow tests before (mum has really bad asthma so they thought it could be that but its not) And had one chest x ray about 2 years ago so maybe it will be some kind of exercise test?

I find it very frustrating how they just dismiss you if they cant easily find something wrong!
Are you taking any medications at the moment to help you with ure symptoms?

My head feels the same it seems to hurt alot more in the heat and my chest how u described 'swells' is exactly like what i feel.

I know and even if people do reply its rare that you find someone who knows exactly what your feeling, your the first person ive found who has had an answer that could account for ALL of the symtoms (symptoms) ive been experiencing!
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thanks for your post, ive had alot of people say to me about my doctor.
Also i have tried medications for vertigo before but none seemed to work..if anything made me feel worse!
But thankyou for your suggestion on the chairopractor ill have to look into it =)
Hope your feeling better soon, and find out whats wrong with you too!
X
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I currently am not taking any medications for my symptoms.  I tried to get back on verapamil, but the cardiologist said no.  Today, I climbed up a hill and some steps and when I got to the top, my heart was racing along at approx. 148 beats a minute.  It sure didn't take long to get up to that level!  I think that was the same number that I had when I got up yesterday morning, which took much less time!  

There are certain pills I have to avoid because of my tachycardia, because they make it worse.  For instance, benadryl... that has made both my pulse and my blood pressure rise.  Also, I have IC, and almost all the drugs for bladder have an adrenergic affect on the heart, so I'm not allowed to take them.  Nubain is another that made my heart race (I was given that for  a migraine once or twice).

Re: the cigarettes- I would go slower than cutting down by one a day....what I meant to communciate is- like you say, count how many you currently are smoking..... the next day go down by one (one less than your usual amount).  

Stay at that one less than your usual amount for a few days.  Then, go down to two less than the number you originally started with.  Stay at that number of cigarettes (two less than your original amount) for a few more days.  And so on, tapering down slowly, with a few days between each cigarette being subtracted from your daily use.

That way, maybe your body will not get withdrawals so bad if you take it slowly.  You might check with someone on this, as I'm no expert.  I just know when it comes to certain prescribed drugs, they have you taper off slowly, to try to avoid withdrawals.

You may want to do the same kind of thing with caffeine, as it is known to speed up your heartrate.  I was told a long time ago because I was diagnosed with IBS that I should cut out the caffeine.  I loved to have cherry coca cola sometimes.  I think I was 17 at the time.  

But, I would recommend focusing on just one thing at a time.  Don't go off the caffeine slowly until you have finished getting off the cigarettes.  You'll be more likely to stick with it if you can minimize the withdrawals.  Caffeine is a drug too, and there might be headaches from going off it.

I know what it's like to go off prescribed drugs, and it's no picnic.  But I'm so glad my body is not dependent on certain medications anymore.   I'm rooting for you, Dawn!
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Well i counted my ciggarette intake yesterday and it was around 17 which is actually less than i thought i was smoking!!
Yeah the one down for a few days thing i think is a good idea, try and gradually get used to not having as much niccotine.

If your heart rate speeds up so much doing simple things surely the cardiologist should be looking for something to do that can help you? Or do they just expect you to get on with it?

I seem to be feeling a bit worse the past few days, very out of breath, fast heart rate, dizzy and quite shaky aswell do you ever get that?

Im so sure all my symptoms are from one cause but im sure my doctor doesnt think so and because im feeling worse i really want him to try and help me so its just so frustrating to know that hes not looking for things that maybe he should be.

Im really going to try with this smoking thing so thanks for rooting for me the support is very welcomed!!
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I previously tried a couple of drugs that are for P.O.T.S..  They don't have a very high percentage success rate, however.  One of them seemed to increase my chest pains.  Neither of them seemed to help.  So, I was told eat lots of salt.  Wear the support hose if it helps me.  

This last cardiologist talked about your heart rate can go up if you are anxious or emotionally upset... and I said- or if you are getting up in the early hours of the morning to go the bathroom.  I think he might have mentioned sitting on the edge of the bed for awhile before standing (something I normally do, but didn't do for purposes of the test) and pumping my fists- that was a new one to me.  I'd picked up something about pumping my calf muscles in the past, so that any pooling blood could circulate better, but my fists?  Frankly, Dawn, I'm not sure that one would help too much.  I think they pretty much dismiss a person because they really don't know how to help them.

I've made some adjustments- like using a shower chair, sitting on the edge of the bed a little before standing, and sometimes, not getting up too much soon after my main meal of the day, at which time sometimes the tachycardia symptoms and head swelling with pain can be worse. Not walking very fast is another one.  I recently had a physical therapist have me walk a treadmill.  I was there for back pain.  I told her how I thought it could be a problem but was willing to give it a try.  After I got off, when my heartrate had reached 160 in a few minutes, I was lightheaded walking back to the exam table.  But she had plans for me to get back on the treadmill next time.  There was no next time.  I actually was there trying to get ultrasound for pulled back muscles, which she refused because of the possible microadenoma in my pituitary?  Not sure about that one, since that's possibly in my head, a long way from my back, but anyway.  Something about the sound waves she thought might disturb it.

Regarding rapid heartbeat, shortness of breath and dizziness.... all of these were worse when my blood iron level were low.  I have gotten shaky before when I didn't eat in a timely fashion.  Think the blood sugar got too low.  I've also gotten a migraine before from not eating on time.  I can also get shaky when my energy level gets too low... you might try some gatorade.  And, when I'm anxious or very stressed, I can get shaky then too.  I think sometimes the tachycardia makes me feel very wired, like I've been drinking caffeine,when I haven't.  Which reminds me, once, I took a couple of cafergot pills for migraine (never again)... that made me very shaky.  That medication has caffeine in it.

Also, have you started taking 325 mg ferrous sulfate, which has elemental iron in it once a day with at least 250 mg Ester- C vitamin?  Because, there's a good chance your iron is low... it would be nice if the doctor would tell you if they tested you for your blood level of iron and ferritin (iron stores) and T.I.B.C. or total iron binding capacity, so you could know for sure.  But since I assume you are a menstruating young lady, one iron pill a day is not likely to be very bad for you and might give you a lot of benefit.  It is sold here in America over the counter, no prescription needed.  

Of course, if the doctor knew you had very low iron, they might tell you to take it more than once a day, but if you don't have that information and are unable to get it, it just might take you a lot longer to get your iron level up to where it should be (if it's low).  Why don't you try it and see if your tachy and shortness of breath and dizziness don't start to improve?  You might just want to take some metamucil or other natural fiber to make sure you don't get constipated.  You might find that the iron gives you a bit of headache, but you will likely adjust after awhile of taking it.  I hope you can get some answers from your doctor regarding iron.  And I hope you can find a doctor who actually cares about your health more.
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Congratulations on your determination to quit smoking!  I look forward to hearing of your progress!  Little by little, I think you can do this.  And I think once the nicotine is out of your system and your body recalibrates itself, it will help your body a lot.
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Sound like you are have a panic attack. Google it and check out the symptoms... A psychiatrist can RX Klonopin and if it is a panic attack your symptoms will disappear like magic.
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Pump your fists? how is that meant to help your heart rate?...  =/ how strange!
Have you ever seen a doctor who specialises in P.O.T.S?

And if they wouldnt do the scan on ure back because of a possible disturbance with something that may be in your head if thats possible then surely they should be finding out for sure and trying to treat whatever it is in your head?
Some doctors really do have the strangest ways!

Also thats exactly how i feel its almost as if ive drunk way to many energy drinks packed with caffiene and now im all shaky. Its a really horrible feeling because my heart rate, Breathing is always very fast, out of breath feeling when its happening which has been alot lately..actaully right now! Also ive been feeling so neauseas i just dont want to eat i always think im just going to be sick so in turn not eating is probably making me feel worse! its all horrible.

As for the iron i havent started taking any yet, i was planning on waiting for this breathing clinc then make an appointment to see my doctor and hopeflly talk to him about quite alot of things weve discussed here like possible causes and tests that ive had done.

And thankyou.. when i next see my doctor i hope we can have a serious talk and he might listen to me about everything if not ill have to try and find someone who will. Its just so stressful to change doctors and then start from the beginning all over again and not just that but theres no guarentee the next doctors going to listen to me either. its so stressfull!

I think i smoked to much yesterday which might of made me feel worse so today im really trying not to =)
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Doctors specializing in P.O.T.S. are pretty few and far between.  The nearest one I know of is a few hours away.  The ultrasound waves I wanted for my pulled back to try to get it to heal faster was refused me a physical therapist- I don't know if she knew what she was doing or not, refusing it to me, but I don't know everything.  It just didn't sound logical to me. Kind of like fist pumping didn't make as much sense as leg calf pumping, since the arms are close to the heart and I don't know that blood pooling is a big issue in arms?  I am scheduled to get a follow up MRI for the alledged microadenoma on my pituitary in my head next month.

I hope the doctor does do tests to rule out different potential medical causes for your symptoms (or to figure out what's the cause{s}).

While I wouldn't recommend klonopin (from experience years ago), you may be having some issues with panic, like Tom suggests (though not all your symptoms seem to fit).

And while high norepinephrine levels in the blood can actually induce a panic attack (not to do with emotional state of mind), right now, you're feeling really stressed about a number of issues, you are feeling nauseated, and your symptoms are worse, so the anxiety with all the stress may be contributing to your feelings .   Small frequent meals might help with the nauseated problem, selecting foods you especially enjoy.

You may want to try something natural for a short time while you are trying to cut back on cigarettes.  It's call valerian root (sold over the counter in USA).  A psychiatrist once told me it is the natural equivalent to librium, a tranquilizer.  One thing, though, you don't want to take it long term, because you can actually get rebound tachycardia from librium and I imagine that would be true of its natural equivalent.

And, yes, it's stressful thinking about starting over with a new doctor.  If you can ask around and research to try to find one that is reported to have schooling at one of the higher rated medical schools, at least a few years of medical practice under their belt, an excellent bedside manner, listens, is knowledgable and is not afraid  to order medical testing, that would be great!
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Could you not get a refferal to a specialist in P.O.T.S? I know it might be difficult as like you said the nearest one is quite far away but it might be worth it in the long run because they might be able to do alot more for you than your regular doctors can.

Good luck with your MRI i hope its all comes back ok be sure to let me know. Haveyou actually been shown whats meant to be in your head on ure past scan results?

As for the panic attack i know i definately get them and quite often but its normally only when im feeling particulary bad...ie my heart is racing very fast or heart palpatations are very bad) ..my doctors reffered to them ALOT i think hes sure thats whats causing everything which im definatly not because i know i havent been having panick attacks all day everyday for the past two years! He's also mentioned depression a few times which if i am its only because of how long this has been going on and how worse ive been feeling!

too be honest im very wary about taking any tablets or medications at all (naturak or prescribed) when i first joined this doctor he tried me on about 20 different types of tablets without any diagnosis for anything and ALOT of them made me feel very worse than i already was. So now im a it worried about trying anything incase it dose the same thing especially because of how everythings got alot worse since then.

im just worried that if i do find a new doctor what my current doctor would say in my records...and whatever he writes is going to be a new doctors first impression straight away. Also its not quite the same with doctors over here (UK) For a start its nhs so i dont pay for my doctor and there for i dont get a choice in who i see just what surgery im registered with. I could go private but the costs are so expensive and you have to pay hundreds per appointment.
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Because they are still learning about P.O.T.S., trying to find things out about it & I've tried two of the main drugs they use for it and didn't do well with them, I'm not sure they could really help me, other than perhaps I would learn about my condition.  However, I wouldn't want to go that long way by myself and none of my family does well with stress.  And I think some of the tests they do might be scary if I allow them to do their scientific research on me.  

What I might suggest regarding starting over with a different doctor, is get your medical records from your current doctors, paying for them yourself.  Have them released to you privately.  Then, select any that don't paint you in a negative light psychologically by any possible doctor's notes, the ones that prove you've got some real medical issues.  Copy them, then give them to your selected new doctor.  (If it's possible to change doctors with socialized medicine)  They likely won't ask you to sign any kind of medical release for medical records if you supply them with a bunch yourself.

I know what it's like to be afraid of taking new medication.  I got that way myself when it came to my migraines, after making myself available as a guinea pig for a long while because I was so desperate for relief.  You might read up on valerian root though, because it is really a mild tranquilizer sold over the counter... I believe it's what Anne Frank took when they were hiding from the Nazis.  I wouldn't suggest it long term though, just if you feel you need some help with your nerves over the quitting smoking thing and other stressors- a short term basis, but only if you feel comfortable trying it.  

You can also try deep breathing exercises, if that doesn't stress you too much, because that can actually help your body (not done to excess).  I remember at least one doctor having me take a couple deep breaths or so to slow my heart rate.  I wouldn't suggest more than 10 minutes at a time.  You can try this while you are doing something you enjoy.  If you find it helps relax you, like it's supposed to, it might be worth continuing as a regular thing.  Soothing music, and, if you know God, reading from the Psalms can also be helpful.  From the Psalms "When my anxious thoughts multiply within me, Thy consolations delight my soul."

I've talked to a radiologist on the phone, but not been shown in person the potential microadenoma.  It was originally described as an ill-defined nodule by the first radiologist.  The radiologist I spoke to read my second MRI, after the lady radiologist who read the first one had retired.  The pituitary is so small, only the size of a pea.  Yet God created it to control so many hormones!  I was told it was not possible that the tumor would be causing any of my headaches, being as small as it is (if it's there, which the 2nd radiologist questioned).  I think he said it was marginal, and he probably would have passed it as normal, but had to defer to the first radiologist, since she said it was there.  The Lord knows if it's there or not and I'm in His hands... I am also concerned about a recent high norepinephrine blood level I had, since it was the highest I've ever seen it and much higher than normal... I hope to get some more testing soon about it.
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Yeah scientific experiments on you could definately be quite scary! I wouldnt wright it off completely though (seeing a specialist) because if all else fails they may know something which could hopefully help you feel better.

I did think that about the doctor records but im pretty sure they'd transfer all there records over aswell anyway and plus my doctors surgery is the only one thats close to me which wouldnt be so bad if i didnt feel to awful to travel to far evertime i have to go down there. im not sure i guess ill have to see how things work out when i next see my doc.

All night ive been having this HORRIBLE feeling like my heart just keep stopping (different from a palpitation) and then when it comes back my chest feels very tight and heavy. Like somethings crushing my whole chest. Its making it feel very difficult when im breathing and quite scared aswell.

I do try deep breathing when my heart rate feels bad but sometimes it seems to help a little and other times not at all i suppose it depends on what kind of state i am in and how bad im feeling.

Maybe when you have your next MRI if they say that it has shown up this thing again you should ask to see it for yourself?
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For crushing chest pain, you should go to the ER.  I hope you are feeling better now.  I've had chest pain before with my tachycardia (at least when I was iron deficient), but it wasn't crushing.  It can be scary anyway, even when it's not life-threatening.    Next time if you feel that way, you might try coughing to try to open up those blood vessels, in case they are spasming from your heart beating so fast.  

Do you have stethescope?  If not, I recommend you get one.  It can be reassuring to listen to your heartbeat and hear if it's beating regularly (although maybe fast) and not skipping beats.  Or if you hear it not going at a normal (or fast but otherwise normal) rhythm, you could get yourself in to the ER if it's accompanied by crushing pain, since that kind of pain can be a sign of something life-threatening.

In America, with privacy laws, one doctor is not supposed to be allowed to view a patient's records from another doctor UNLESS you first sign a medical record release form authorizing it.  Is it not that way in England?

If I have a doctor referring me to that place studying P.O.T.S., maybe I would go, if the Lord wills.  I have a copy of the two discs that have the pics of my pituitary, but I can't really tell what I'm looking at.  I haven't had a radiologist point it out to me.  It would be interesting to have them show me what they are talking about.
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I know i always thought that to (crushing pains = hospital) but ive been getting them so much im worried they'll think im just wasting there time and not take me seriously.

Dont have a stephescope but i know that when i put my hand on my chest when my breathing feels bad i can feel my heart beating irregular and skipping beats. do you notice yours alot when it happens?

And no its not like that here, whenever ive changed doctors they automatically switch the medical records to your new doctor...never had to sign a release form that i know off!

Hmm maybe at your nect mri scan appointment you could take it in with you and ask them to just sit down with you and show you what they mean on scans?

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I would recommend the stethescope, which is much better than just feeling your heartbeat, since you can actually hear it!  I think I remember feeling it and find that the stethescope told me something different than what I was feeling.  

Sometimes a tip off for me that my heart is going like a house afire is a little trouble breathing (short of breath), like I'm exercising when I've hardly been doing anything at all but am in an upright standing position (for instance, making my bed in the morning).  I have felt like I am hot while standing in the past which has tipped me off that maybe my heart is going fast and my pulse proved me right.

Too bad about the medical record transfer without your permission!

That would be nice to have a radiologist show me, but I'm not sure if they will give me the access to the radiologist or not.
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Ive got in the habit recently of feeling my heartbeat ALOT i dont know if it makes it worse or not but i worry so much when it doesnt feel right.

I have that all the time too! i feel like ive been running non top for 20 minutes when all ive been doing is sitting still! And again like you when i make the bed/hoover any thing simple it make me very hot, out of breath and my heart starts racing its horrible!

Is it only a radiologist that could show you it? Couldnt a neurologist talk it through to you if you see one again any time soon?
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I wonder then if you mightn't have I.S.T., inappropriate sinus tachycardia, aggravated by caffeine and nicotine consumption?  By the way, did you get your blood iron level, ferritin and T.I.B.C. checked lately (total iron binding capacity)?  Because if that's low, it could make that rapid heartbeat worse too.

Maybe an endocrinologist who was trained in pituitary well enough to do surgery might could point out a tumor to me, I don't know.  I don't have a neurologist.  I talked to a nurse at my insurance today and she told me they don't have any neuroendocrinologist specialty doctors listed in their plan (which is the kind of doc that rumpled on the brain tumor/pituitary tumor forum recommends).
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You have been going through a lot of suffering. Here is something you can do yourself to help the body.The idea is to gradually reduce the symptoms as the immune system builds up with the help of extra oxygen energising the cells.Start with 1 or 2 minutes initially.Once you can do this for 15 minutes, I will give you more exercises to do.Please allow time for this to work.Do not worry too much about the science of the body. Try to do this breathing technique before having a smoke.  Keep a journal of how you feel.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Anulom Vilom –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.
14 July 2009
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No they havent tested them yet, Im not sure if they think they should or not and im not very good at remembering tests so much and forget which ones to mention! =(

Hmm it seems strange though that a doctor would see a possible tumour and not tell you to have a follow up with any kind of specialist doesnt it?
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hello thanks for your post,
Dose the exercie you posted help to improve breathing or just the immune system as you said above?
And would it be ok to do it even feeling short of breath/dizzy/irregular heartbeats? i mean it wouldnt make it worse?
Thanks for the advice again =)
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The breathing technique improves your immune system, which in turn helps you with the problems you are having.
Because of your problems, I have asked you to start with 1 minute or less and then increase the timing very gradually. Stop when you feel dizzy/short of breath etc.
This is something you can do to help yourself. The extra oxygen helps you.
Give it a try and once  you reach the targets 5, 10 and 15 minutes you will definitely be improving.
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It would be worth writing down- blood iron level, ferritin, T.I.B.C. and taking it into your doctor.  My tachy and shortness of breath were worse when I was deficient in iron and had some improvement when I had more iron in my blood and iron stores (ferritin).  My heartrate had been getting up as high as the 160s more than once when I was iron deficient, just from standing up in the morning.  Now, the highest I've seen it is the low 150s.

I actually was referred to an endocrinologist.  I've had two pituitary MRIs, just months apart.  I went to a couple endocrinologists in the state I used to live in.  The first one specialized in diabetes (which I don't have).  The last one in that other state said to get a f/up MRI in a year (which is next month).  And right now, I hope to get the results, but if there's been any change, I guess I might not be able to discuss it until October with new (second) endocrinologist in the current state I live in.
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Ok thankyou when i can get an appointment with my doctor ill ask him about the iron levels, although they havent actually diagnosed my breathing problems as anything yet so im not sure they will?

Will you still be having general MRI's or just piuitary ones now?
I really hope someone helps you with everything to unserstand it all better and actually shows you what theyve been talking about!
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I hope the doc does check those iron levels.  I found yesterday where my values were normal for CBC and low for iron.  Whatever's wrong, I'm sure iron deficiency can only make it worse.
When they do the pituitary, I found out they look generally at the brain, but focus in on the pituitary.  They use dye to get a better look.  I recently read how there is usually decreased enhancement where there is a tumor.  That is what it said on my initial report on one side of my pituitary.  But, on the second one, a different radiologist said there was decreased enhancement on the other side, as well, which was different from the first study.  However, he thought it had something to do with technique?  I wonder.
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It sounds to me like you need to see someone about your scan results this time who can talk you through them and give you a straight answer as to whats going on!

also i wouldnt be surprised if my iron levels where low now since ive lost so much weight in the past month, completely lost my appetite and just feel weak all the time. Maybe theyll think its worth testing for if i tell them about the weight loss and everything?
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You might also have the doctor consider a problem with your thyroid or thyroid stimulating hormone (put out by the important pituitary gland).  Also, constipation or depression I believe could all be reasons for a loss of appetite.  There are probably others as well.  

Here's a list of iron deficiency symptoms from web md:
Mild iron deficiency anemia may not cause noticeable symptoms. If anemia is severe, symptoms may include:

Weakness, fatigue, or lack of stamina.
Shortness of breath during exercise.
Headache.
Difficulty concentrating.
Irritability.
Dizziness.
Pale skin.
Craving substances that are not food (pica). In particular, a craving for ice can be a sign of iron deficiency anemia.
Other signs may include:

Rapid heartbeat.
Brittle fingernails and toenails.
Cracked lips.
Smooth, sore tongue.

  Here's a list from Dr. Priscilla Slagle I got from the way up, a com website:
WHAT ARE THE SYMPTOMS OF IRON DEFICIENCY

With all the possible consequences from iron deficiency, you can see the extraordinary impact of low iron and why this is such an important topic. An iron deficient person would not have all of these symptoms, but some constellation of them. With 5 or more, consider iron problems.

Depression
Fatigue
Listlessness, weakness, decreased work productivity
Impaired learning and cognitive function
ADD and ADHD type behavioral disturbances
Developmental delay in infants and young children
Poor memory
Decreased attention span and increased distractibility
Impaired reactivity and coordination
Irritability
Dizziness
Appetite loss
Cravings for non foods such as ice, dirt or clay
Constipation
Difficulty swallowing (because low iron may cause a thin membrane to grow across the esophagus)
Joint soreness
Night time leg cramps
Asthma
Sores on skin, or itching
Poor wound healing
Can cause excessive menstrual bleeding
Hair loss (LOW IRON IS A FREQUENTLY OVERLOOKED CAUSE OF HAIR LOSS)
Headaches
Sore or burning tongue
Soreness in corners of the mouth
Brittle, flat, or spoon shaped nails
Longitudinal ridges on nails
Heart palpitations on exertion
Shortness of breath
Cold extremities, with decreased resistance to cold and poor regulation of body temperature
Tendency to recurrent infections
Chronic bladder infections
Anemia (hypo chromic, microcytic) paleness, weakness, drowsiness, fatigue
Numbness & tingling
Night sweats
Fragile bones
Growth impairment in children
Eye soreness
Vague gastrointestinal symptoms: belching, gas, nausea
Vitiligo (light blotches on the skin)
Swelling in the ankles
Bluish tint to the whites of the eyes
Visual disturbances
Papilledema (swelling inside the eye)
Enhanced heavy metal absorption and risk for toxicity. Those with low iron will have an increased GI absorption of metals which is not specific for iron, so will absorb more lead, cobalt, cadmium, mercury. High blood levels of lead are more common in children with low iron.
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i had all the same symptoms that you explained. i was severly anemic and have had four blood transfusions. then on top of that i found out my heart wasnt working right and had to get a pacemaker. i am only 27 and at first doctors acted like i was crazy. as if young people cant have health problems. dont let anyone tell you that there is nothing wrong. you know your body and most likely with those symptoms its something to be concerned about.
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Thanks for posting the symtoms (symptoms) i certainly have a lot of them, but surely if i was experiencing low iron or anemia to that extreme they'd of found it on the blood test?
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Thanks for your post, im sorry to hear about your problems, but thankyou for not thinking im crazy =)
I know your right you have to keep trying to get through to the doctors and make them belive you but its hard especially when your as young as me!
But its really nice to know theres people who have been there and got through it and been finally belived!
Are you better now? I hope so!
Thanks again x
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thanks for your response! a few things are better but there is still a lot thats not. my dizziness and pressure headaches are still around. my doctor just sent me to a neurologist due to my numbness and tingling in my left face and arm. she told me it could be migraines, that you can have stroke like symptoms before a migraine. my head hurts everyday, you know - like its going to POP. or there is a problem called t.i.a. which is all the symptoms of a stroke with out having one. well i am sorry you have so many problems with no diagnosis. by experience that is the worst feeling EVER!!!! i know you said that you wore a holter monitor for seven days, you need to ask for a twenty one day which is what they put on me. i had a mobitz II  which is a heart block in the electrical part of the heart. my heart was stopping at night for about 5 seconds but not every night. which is why you might need the longer monitor. you sound anemic too but if they have done blood tests then you're probably not. hemoglobin (cbc) is pretty routine in all blood work, especially with your symptoms. i really do understand what you're going through. its all very scary. before getting my pacemaker i was scared to go to sleep at night. i would walk around all day feeling my pulse because it was either going too fast (pounding) or it felt like it wasn't beating at all, like i was dying. one thing i did notice was that when i stopped drinking caffein (soda) my tachycardia attacks quit. i dont know if you drink or eat a lot of caffein but if so i say quit and see if anything changes. you might also want to see if they checked your electrolytes, too low or high causes heart problems and can be very dangerous. my potassium was very low when i was having my tachycardia attacks. anyway even i still have a lot of unanswered problems so i feel for you. oh yeah do you ever get a sensation that gravity is pulling at your heart and head, like a heavy pull. i still get that all the time. if you have ever rode the gravitron at a fair, it feels a lot like that. when i tell the doctor they look at me like im crazy. ha ha
thanks, talk to you later, bye
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I can only tell you my own experience and what my doctor at the time told me.  I had a normal CBC, including, but low iron.  He said the low iron can cause tachycardia.  I don't believe it caused mine, since I still have it and my iron is fine now.  But it did make my tachycardia worse and made me more short of breath when standing with my POTS, and made me very tired and I had very low energy.  So, it is worth get your blood iron, ferritin and TIBC checked, not just your CBC, because I had improvement in both my tachycardia and chest pains when my iron level was brought up into normal range from taking iron with Ester -C (vitamin C is supposed to be taken simultaneously).
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im sorry, i think i worded my last post wrong. i really agree with the other person posting, you do sound anemic which is what i was too but since im not a doctor i guess i didnt understand exactly how they check your iron. i was told that i was anemic by my cbc. in a female your hemoglobin should be between 12 low and 16 high. mine was 7.4 which required my first blood transfusions. i didnt know that you could still be low in iron with a normal cbc. so with that said i strongly agree with the other comment, have your iron checked because your symptoms sound almost exactly the same as mine before i had the transfusion. i also believe my anemia caused my heart problem! so yes, get it checked out. it can cause great damage to your body if not treated. mine was due to abnormal periods. dont know if you have those problems but it could be a number of reasons.
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im sorry, i think i worded my last post wrong. i really agree with the other person posting, you do sound anemic which is what i was too but since im not a doctor i guess i didnt understand exactly how they check your iron. i was told that i was anemic by my cbc. in a female your hemoglobin should be between 12 low and 16 high. mine was 7.4 which required my first blood transfusions. i didnt know that you could still be low in iron with a normal cbc. so with that said i strongly agree with the other comment, have your iron checked because your symptoms sound almost exactly the same as mine before i had the transfusion. i also believe my anemia caused my heart problem! so yes, get it checked out. it can cause great damage to your body if not treated. mine was due to abnormal periods. dont know if you have those problems but it could be a number of reasons.
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I know they are necessary BUT BE CAREFULL not to have too many. Last year I had three and now I had bad reactions to the dye - skin problems: face, head, ear, feet etc.., knee pain, and other syntoms. You also can get something worse something call:NSF &
NFD AND is not reversible.
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HAVE YOUR Dr. test you for allergies? how long do you have these ssymtoms? I knw a man who had some of your symptoms and he was allergic to a coat his wife bought him. This doesn't mean you case is the same... but what I mean is check when and why these symptoms appear.... to see if there is a conexin.
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Hiya just read your post and the comments by SurgiMenopause regarding low ferritin.

I have a variety of symptoms at the moment to and have a post tiltled 'any advice appreciated' detailing my illness, which in short could be caused by an adrenal tumour or possible POTS.

But I to have normal CBC (FBC) but low ferritin stores.  Mine are 8 and I think the normal range is 10 - 154 (I may be wrong).  I also have low folic acid and low vitamin B12.  These can all play a part in palpatations and Tachycardia etc.

Also, I have formally requested copies of all my hospital notes along with all tests/results that have been carried out.  This can be done by a letter of request sent to the establishment you want this info from i.e. gp hospital etc.  They have to give you what you request unless the dr/consultant you are under believes it would be detrimental to your mental health (this is a rare occurance and only rejected in severe circumstances).  You can request to visually see these records or can request photocopies which a charge of 40pence per sheet is made (up to a max of £50 I think).  

I hope you get closer to a diagnosis and take comfort from this site as I have in this scary and confusing time.


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Thanks for replying, im going to ask my doctor about the anemia thing when i next see him! alot of people have said to me about that now so i think it should be checked!
When i saw the neurologist about my numbness in face, dizziness and headakes they said possible migraines too but i tried every treatment they prescribed and none of them helped although alot of them made it feel worse!
And i dont drink a bit of caffiene (tea) every day so maybe ill try to cut it out as you suggested although im trying to quit smoking at the moment so i dont think i can try both at once! ...i didnt know anemia could be so serious if left untreated! im sorry yours got so bad.
and i get that heavy head feeling ALL the time. like someone or something is pushing my head down (normally backwards) and i have to lean my head upagaint something to try and make it go away its horrible!! x
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Hi thanks for your post, ive been feeling like this for over two years (gradually getting worse) and no ive never been tested for allergies. so thanks for your suggestion my doctor might test me, ill have to ask
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Thankyou for your post, SurgiMenopause has helped me alot, And as so many of you have suggested the same tests i think i need to ask my doctor for them.
Also if you could find the time to message me how you requested copies of all your medical tests/records id be really gratefull as id like to get copies of mine.
Alot of peoples messages and kind words have helped me on this site, and it really dose comfort you to know other people have been and are going through the same as you and they dont think your crazy.
Thankyou.
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could you please write the exact tests you think i should ask the doctor for in your next message so i can write them down to take with me?
Thanks for your help, youve been really brilliant
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hiya,

I wrote a letter to the hospital that has been treating me and addressed it to the Manager of the Medical Records Department.  I stated that I wanted all tests, along with results, that have been done on me from the date I needed them from.  In my case I am not really interested on the notes that have been written just the test results.  In short I want the facts not speculation.  I recieved a telephone call about a week later and the lady was lovely. I just explained how unwell I was and that I wanted to see what had been tested for.  She then rang me a couple of days later and said 'Eve you have 2 big files...are u sure!!'  So now she is, in her words, 'going to put it together like a story for me'!!  

Then I recieved an application form to fill in my details.  You have to get someone to sign this to to verify that you are who you say you are (I had a call this morning to inform me that I hadn't done this!!!! so it's being sent back out to me).  After they recieve this they have to get signatures from the consultants/drs who treated you and then they will ask for payment and your copy will follow in the post.  You can also ask to visually view the originals if you did not want to have them copied for you.  

I decided to do this after 7 weeks in hospital with no official diagnosis and a glance at my creatinine results that were twice the highest normal level.  This was indicative of 3/4 end stage chronic kidney disease!!  They did come back down but I did not even know they were raised in the first place.

You can also request copies of your notes and results from your GP by writing to them and asking to see their records, they may have carried out different tests than drs at the hospital.  

Let me know how you get on, goodluck x
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Regarding your thyroid- did they test just TSH, or did they test T3, T4, and calcitonin as well?  If they are willing to do another blood test for the thyroid, I recommend try especially to get T3 checked in addition to TSH.   You've had an issue with your appetite lately, etc., and they really should check those out.  

Complete endocrine testing of all pituitary hormones that might have something to do with your symptoms would be nice to make sure none of those hormones are out of wack that might indicate a pituitary MRI is in order.

Don't forget catecholamines and definitely plasma free metanephrines regarding your heart rate!   They should be trying to rule out a pheochromocytoma, particularly if you've had any episodes of high blood pressure.  Also, if you have the hyperadrenergic form of POTS, your standing norepinephrine level could be revealingly high.  Did you get the tilt table test ordered yet?  This test can be conducted by an electrophysiologist.
  
Blood iron, ferritin (iron stores) and T.I.B.C. (total iron binding capacity) should be checked,  not just CBC for the menstruating female, as you can have low iron and still have your CBC be in normal limits.  This was the case with me prior to my hysterectomy.

If you had hyponatremia, which is low salt in the blood, it said signs and symptoms can be: headache, difficulty concentrating, memory impairment, confusion, weakness, and unsteadiness which may lead to falls.  

I wonder if they tested your sodium level in your blood (it would be done with an electrolyte panel).   Also, have they done a 24 urine sodium test?

If you want to get tested for fibromyalgia, you probably would get the best help from a rheumatologist knowledgable about it.  They test "trigger points" to see if you have it.

When was the last brain CAT scan or MRI you had done?  Do you have any new symptoms the doctor would think would warrant getting another scan?

When was the last time they did a simple chest x-ray to make sure there are no lesions or other problems that can show up on one that may indicate a cause of any of your lung symptoms?

What type of tachycardia did the holter monitor show? (ie sinus,supraventricular?)
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Thankyou for all your suggestions.

I've only ever had one MRI which was in early april, since then my head pains and dizziness have got alot worse but i dont think the doctor will order another one, because firstly it has to be the neurologist that orders it and he only did that the first time because he thought it would stop me worrying (i think he thought it was all in my mind to be honest) and second i dont think my doctor would even refer me to the neurologist again now. So i really dont know what else i can do about it!

As for the chest x-ray, ive one ever had one which was about a year and a half ago at the emergency room, they said it showed back then that my left lung was slightly murred which could be an infection so they prescribed me anti biotics...then they wrote up on there reports that they didnt find anything at all in the x-ray!! (which made me look like i was lying when i told the nuerologist about it)
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Heya,
Thankyou, i think im going to write to the hospital first for there results of my scans and things and then to the doctors i think.
If i need your help with anything would you mind if i messaged you?
Ive never done this before so hopefully ill do it right!
xx
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I don't mind at all, if there is any help or advice I can give please don't hesitate to ask.  I am new and learning to and am fully aware how scary and frighteninig the unknown is.  A confirmed diagnosis has a lot to be said for itself...at least then we know what we are dealing with!!

As suggested by SurgiMenopause a tilt table test would be good.  If all hormone tests are normal this would give a diagnosis (or not) of POTS.

I had a tilt table at fazakerley Hospital, Liverpool - were I was a patient.  I am unsure whether this is standard equipment in all our hospitals or whether you have to be refered to an establishment with one.  
Keep me posted how you are getting on x

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I hope you can get another chest x-ray, since it's been a while and there is some question about the last one as well!
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Hi Dawn,

Just wanted to check on you and see if you have figured anything out yet. I'm assuming not since you haven't posted any news. You know, I think its really wierd that we have a lot of the same problems that they have no answer for. The way you described the heaviness of your head was so on point. When I'm driving it will feel the same way you described, like its being pulled or pushed and then I have to lean it against the head rest of my seat. Its really scary.

My appointment with the neurologist isn't until Sep. 8th. I will let you know what they tell me, hopefully they dont try to say its migraines because I'm almost positive that its not. Right now my primary doc is trying to tell me that she thinks its anxiety. It really gets me upset when they say that because I only feel anxious after my symptoms start, because of course the symptoms would make anyone nervous, right?  

I think its cool that so many people have offered you advice but from what I have experienced is that if you go to a doctor and tell them what you think might be wrong and what you think they might need to test for, they tend to not listen and think you're crazy. So if you figure out a way to get a doctor to listen, please let me know because in my case I've been running in circles for almost two years now looking like a nut case looking for answers for my problems other then the health problems that I have mentioned before that i was treated for.

The other thing I was going to mention is that I think it would be a good idea to make a diary of your symptoms, like for example tingling on face, sitting reading a book in my room, just ate a banana and had a glass of juice. etc. etc. I thought about doing it for myself when I read your post from cpmty about allergies. In my case I dont think its allergies but after doing so much research online about my symptoms, i have leaned that there are a lot of environmental things that can effect your health that we wouldnt really think of. for example lead poisoning. I just want to see if i can maybe find a connection with something. i guess im getting desperate for some answers.
bye for now
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I know it is very strange, especially as the doctors dont seem to be able to find whats wrong.
Its very scary when i get that heavy head feeling especially if im standing up because i dont know what to do with myself! it makes me panick alot about leaving the house on my own or doing anything at all that could make me feel worse.

As for the neurologist i hope your does listen to what your saying, mine im sure just thought it was in my head 'anxiety' as you say. Which again like you said sure now i get anxiety and panick attacks when i feel very bad but thats natural...i didnt have it to start with its the feeling unwell thats making me anxious. But everytime i say that to the doctor i dont think they listen which is difficult because you get to the point where its like if im explaining and there not listening what else can you do!?

And dont worry ive been feeling this way also for over two years now and havent found anything. Ive only ever seen one doctor who i truly think actually belived me and didnt go 'oh shes young its in her head'
And yeah i feel stupid suggesting things to my doctor...hes not nasty but he just kind of dismisses my ideas in an 'im the doctor' type way. which makes you feel even worse so if you manage to find a way either do let me know!

Its strange you say that ive actually been keeping a health diary for just over a year now, nothing that i can see could suggest im allergic to anything but it definately shows how ive just started feeling worse and worse. It started with like two lines of how i felt now each time takes up a whole page of all the symtpoms im feeling its horrible!

Keep in touch and let me know how your feeling.
x
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Ive thought that quite alot about the chest x-ray but i dont think i can get one without it being sent for by a cardiologist so maybe i need to try to be reffered back to him again. Although he said he wasnt happy to see me again untill id quit smoking and drinking caffiene =(
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Thankyou its nice to know people stil lwant to help you!

Im really not good with tests and things either which doesnt help so maybe if i can get some of my copies i can post my findings on here and hopefully get some help like that!

I think id need a cardiologist to refer me for a tily table test and i dont know if my doctor will refer me or not but i can try.
Im not sure about the hospitals that have them either but it might be worth trying anyway because if i have it then it cant help not knowing!
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I have all the same symptoms but I now know that mine were caused from taking Chantix.Were you ever prescribed it?
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Here in the U.S., a primary care doctor can order a chest x-ray.  What you want them to look at is your lungs more so than your heart, because you are having trouble breathing.  Since you are a smoker, you are at greater risk for lung related problems, including cancer.  It's worth asking about.  If they find something, they may want to refer you to a pulmonary specialist (besides the testing place you already have a referral to).  

I hope you are doing well in your efforts to keep slowly decreasing the cigarettes!  I want to continue to encourage you that quitting is the right thing for your health.  Don't give up the fight!  Those cigarettes that beckon you to suck on them are sucking the life out of you.  Keep up the determination to battle this enemy of your physical well being!  Go, Dawn go!
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hiya Dawn,

I'm sure that your GP can request a chest X - ray and even a tilt table test.  You could even ask him/her to check your heart rate whilst laying and then again when you stand, just to get an idea of the changes in them - if you do have an abnormal response at least it will be recorded.  

When you do recieve copies of your tests post them here we may be aware of some of them.

Take care x
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Thank you for your post, Im not sure if ive ever taken it, i was ill for about a year and on medication contantly with tonisillits and abcesses in my throat, is it some kind of anti biotic?
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Yes maybe if i see my doctor and tell him how bad its got he might think an x ray is a good idea especially now theyve cancelled my breathing appointment for a later time.
Im still trying with the cigarettes although to be honest havent been doing very well lately but im going to try harder now. Thanks for your support!
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my doctor i dont think really listens to me when i try to suggest stuff so im worried ill say oh how about tilt table test and he'll just go no if u needed that the cardiologist would of ordered it...case closed which is what he did when i mentioned dysautonomia (sorry about spelling) Maybe i should try talking to a different doctor about it.

Thankyo ufor your help x
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Hi Dawn,

Was wondering how you have been? Hope all is well or at least not worse! Have you found out anything new on what may be wrong? I also wanted to tell you that there is someone who responds to questions by the name doctornee, they seem pretty knowledgable and by the name I think it may be a doctor. You may want to ask him or her about your symptoms.

Bye for now
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Sorry but I went back to check my post and the correct name is doctornee medical.
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Are you still alive and kicking?  I'm concerned about you.  Did you get your doc to order that chest x-ray?
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Thankyou for the suggestion!
How have you been feeling?
I saw my doctor again and told him that ive been feeling alot worse (i really have) and he just said the cardiologist or neurologist would know if there was something wrong and prescribed me a peak flow meter so he can see if i need an inhalor even though hes already told me i dont have asthma! Its all getting to me quite alot, its very difficult when the person that can help you doesnt belive what you tell them =(
xx
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573038_tn?1235398145
Im sorry you were concerned i just havent been feeling very good at all lately so i havent been on here much.
I did have a chest x-ray (Although not ordered by my doctor!) And the doctor at the hospital said it came back ok so thats good at least i suppose!
xx
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970256_tn?1249427574
Well that stinks, I was really hoping to hear that you were feeling better. I really think you should see a new doctor, the one you have sounds like a quack (no offense to him or her) but common, if you don't feel good then you need to know why!
I have been feeling a little better. My dizziness has subsided quite a bit. I'm starting to think that for me I just really needed my pacemaker because I have been slowly getting better since getting it. Lets hope : )
Keep in touch and like you I haven' t been on here much either, so if you do right something I may not respond right away but I will eventually. I check your posts anytime I'm on.
Bye for now
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573038_tn?1235398145
Well im glad to hear your dizziness is feeling a bit better! its a start!
How long have you had it now? You must have been so scared when the doctors told you what you needed at your age!

And yeah i was thinking of changing doctors too as he just doesnt seem to belive me but ive been told you can change doctors within the same practice so i spose ill have to look into and try to sort something out =(

I hope that you keep feeling better,
xx
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726204_tn?1285879778
sorry to hear you have not been feeling to good, I hope you pick up soon.  I to am not good - but we will get there stay positive.  

I would seriously consider changing you GP, you need a dr who is going to fight your corner and there are many of them out there.

Also, I have found out that a hospital in London has an autonomic investigation/treatment unit specialising in Dysautonomnia (inc POTS) and many other related conditions.  I am trying to be refered there to Prof. Mathias - he's very highly recommended for POTS in the UK.  Your GP can refer you or a hospital consultant can.  It is every patients right on the NHS to choose were they recieve there treatment now, the hospital of choice is not limited to your immediate area.  I am willing to travel from the North West to have an appointment there.....in fact I am looking forward to hopefully going there.

If you would like a link to the website stating instructions on how referals are done please let me know xx
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573038_tn?1235398145
Im sorry to hear your not feeling to good either.

My head has been feeling really quite bad recently, i have horrible dizzy shaky feelings going on inside and its hard knowing that if i tell my doctor he'll most likely just look angry like im wasting his time.

I tried changing doctors within my surgery and they said no they dont do that, so that was a bit of a dissapointment, Im not sure how much firther i can travel everytime i need an appointment because of the costs! =(

well i definately hope you get the referal you want, dont give up if you know this will help you!
Id love the link to the website please!...i havent been diagnosed with either dysautonomia or P.O.T.S but i havent had any tests done for it either so its definately woeth looking at!

Thankyou for your support,
Hope your feeling not to bad xx
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970256_tn?1249427574
well I have had my pacemaker for 3 months now and yeah it was scary, and still is because once you go through this type of stuff, you never feel "normal" again.
oh well, at least I am still alive and yes that sounds a little dramatic but I am very happy to be here, I love life!!! but its definitely not fun when we're sick! I really hope you find a new doctor, one that will listen and care. I didn't realize that you're in another country, so I'm not sure what your health care is like where you're at, so maybe getting another doctor isn't as easy as it is here (U.S). I just know that I've seen some doctors that really just dont care but I have also seen some that do. They may roll their eyes or even give an opinion but they still always try to see if maybe it could be something else. Just keep trying to figure it out but also try not to worry too much, and yes I definitely know that statement is easier said than done. Keep in touch and take care
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573038_tn?1235398145
Well i think your a very brave, strong person to go through so much already at your age. Its not what most people would have to do and yet your hanging on and loving life and i think your brilliant for that.
Its definately not nice when we feel this way but you just hve to keep trying dont you?
Ive been speaking to my friend (SurgiMenopause) About doctors over here and there recently and it definately sounds like an easier thing to do in the us. Maybe its because you have insurance and things where as we dont on the nhs?
Either way i hope your feeling ok and get the appointment you want, Let me know how you are.
Take care xx
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726204_tn?1285879778
Hi dawn,

Below is the link for the autonomic unit in london:

http://www.uclh.nhs.uk/GPs+healthcare+professionals/Clinical+services/Paediatrics/Pathology+-+Autonomic+Unit/

You can be seen there on the NHS.  Your doctor or hospital specialist can refer you.  If they are not willing to Prof.  Mathias takes private patients at a different clinic and I am unsure of his consultation fee but Believe the preliminary cost for POTS investigations is around £1900.  I have his secretarys number if you would like to go privately.  I am thinking of this option myself now but am just waiting to see whether my GP can refer me (she has recieved a letter from neuro stating he would prefer me to wait).

Good Luck x
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573038_tn?1235398145
Thank you for the site link!

How have you been feeling?

I dont know if my doctor would refer me but ive seen another doctor within the practice recently who might do.
Its alot of money to go private but sometimes it might be the only way to get it done,
Why has the neuro told your doctor theyd rather you wait?
xx
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726204_tn?1285879778
Hiya, i have been really dizzy and foggy lately with palpatations but the weakness has been better x  and tonight I actually went shopping for the 1st time since I crashed in may!!!!!!  I only went for a pack Lunch box for one of my girls and couldn't resist buying allkinds........ a couple of months ago I was to weak to sit up and thought I would never get out again, so now I am on a bit of a natural high xx

The neuro I seen passed me to the cardiologist for treatment options first, but cardio discharged me as they can do nothing for me!  So i'm back with my GP for now.

I recieved copies of my medical notes.  There was not one mention of my orthostatic intolerance.  There are notes regarding my symptoms but nothing about when they were more severe, i.e the fact that I could only tolerate sitting up for several minutes before I suffered chest pain, tachycardia, severe weakness etc....
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573038_tn?1235398145
Im sorry to hear about the dizziness, fog & palpitations. i know how you feel.
My head has been feeling worse lately, very dizzy, heavy and just strange. foggy aswell its not a nice feeling  =(

Im so glad you got out and about!!! i know how hard it can be and it scares you to even think about trying to have to do it but you did!!! at least thats an improvement.

I wonder why your neurologist passed you onto the cardiologist without trying to help you for the problems you've been having feeling weak, dizzy and things? its strange.

Ive been wanting to request copies of my medical records for a while but im a bit worried what they might show, ie the doctors not beliving a word i say!

Ive been havig terrible numb/heavy/akey/tingly feelings in my legs (left one especially) it gets soo heavy its really horrible and it stop me doing so much! have you had this?

I am glad to hear that you've been up and around more =D xx
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970256_tn?1249427574
Hi Dawn
How are you? Well I finally got in with the nuerologist but I haven't finished all of the tests yet and the results still aren't back from the others. Well I've had a c-scan of my spine which actually did come back and was normal. He was very upset because now that I have a pacemaker I cant have an MRI and he said that they should have done one before putting in my pacemaker to make sure nothing else was wrong. I also had a EGG or EEG done where they paste all the leads to your head. Well that was the wierdest thing ever. I had to keep my eyes closed and then lights started flashing and clicking which made me feel like I was spinning so fast that I started to feel sick. I felt the spinning for about 10 minutes, I thought it would never stop. Once it did though I then felt like I was falling. Wasn't painful but extremely uncomfortable. I havent got the results for that test though. I'm guessing the spinning and falling are normal. I still have to have a nerve test done and I think thats all. So when I get everything back I will let you know. You have a lot of the same symptoms as me, so I just want to keep you informed with any info you may not have come across.
Talk to you later
Sara
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573038_tn?1235398145
hi sara, ive been feeling quite bad.
the head syptoms (symptoms) seem to be worse i nearly constantly feel dizzy, heavy head, foggy 'spaced out' feeling, also have parts of my head that are very painfull and feel kind of 'swollen'. My breathings been feeling very tight and bad also aswell as very fast irregular heartbeat. I had some breathing tests done which didnt come back completely normal so the doctor is reffering me to a specialist.
Hes also written to try and get me another appointment with the neurologist but hasnt heard anything back yet and its been about a month which isnt good =(

I'm glad the scans on your spine came back ok...Is there no way of doing an MRI now at all then?
The test on your head sounded awful!! do you have the results back yet?
And do you know what they where actually doing the test for...what it would show up?

I've been feeling very hot and cold (weird like somtimes at the same time and other just really hot for no reason) very sick feeling and shaky like my whole body is weak...do you ever get that? its really horrible.

How are you feeling now? Any news on what could be causing things for you?
Hope your ok,
Dawn xx
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hello i have been expericing the same thing for about 3 yrs and they said it is somethink i will have to live with i no i t hard were do you live is it hot were you live what country do you live in? that could be why??
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351246_tn?1379685732
Hi
Welcome to the MedHelp forum!
What you hear is blood rushing in your ears.
The carotid artery passes about 1/8th inch behind the ear drum. Normally one does not hear blood flowing through it. However some people hear it without any cause.
The other possibility is that you have a high blood pressure so you hear the blood being pumped against great force.
The third possibility is that either there is a narrowing of carotid artery or a clot causing blood to push against great force.
A carotid angiogram or Doppler is a must for confirmed diagnosis. Treatment is by stents or medicines.
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!

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