Im begging someone to help me with this!

[xdawnx]

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

[Dr. Kokil Mathur]

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!

[bertie93]

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??

[xdawnx]

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

[slhlovescats]

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

[xdawnx]

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

[evo123]

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....

[xdawnx]

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

[evo123]

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

[xdawnx]

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

[slhlovescats]

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

[xdawnx]

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

[evo123]

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

[xdawnx]

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

[slhlovescats]

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

[xdawnx]

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

[xdawnx]

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

[LivingInHope]

Are you still alive and kicking?  I'm concerned about you.  Did you get your doc to order that chest x-ray?

[slhlovescats]

Sorry but I went back to check my post and the correct name is doctornee medical.

[slhlovescats]

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

[xdawnx]

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

[xdawnx]

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!

[xdawnx]

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?

[evo123]

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

[LivingInHope]

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!