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573038 tn?1235398145
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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875426 tn?1325532016
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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970256 tn?1249427574
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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573038 tn?1235398145
Thanks for posting the symtoms 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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573038 tn?1235398145
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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970256 tn?1249427574
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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875426 tn?1325532016
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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970256 tn?1249427574
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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970256 tn?1249427574
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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Avatar universal
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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Avatar universal
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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Avatar universal
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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573038 tn?1235398145
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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573038 tn?1235398145
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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573038 tn?1235398145
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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573038 tn?1235398145
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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Avatar universal
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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875426 tn?1325532016
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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573038 tn?1235398145
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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573038 tn?1235398145
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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Avatar universal
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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875426 tn?1325532016
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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970256 tn?1249427574
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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573038 tn?1235398145
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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573038 tn?1235398145
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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573038 tn?1235398145
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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Avatar universal
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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875426 tn?1325532016
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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Avatar universal
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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573038 tn?1235398145
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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573038 tn?1235398145
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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573038 tn?1235398145
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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970256 tn?1249427574
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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970256 tn?1249427574
Sorry but I went back to check my post and the correct name is doctornee medical.
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875426 tn?1325532016
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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573038 tn?1235398145
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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Avatar universal
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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Avatar universal
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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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 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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Avatar universal
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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