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573038 tn?1235394545

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
105 Responses
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573038 tn?1235394545
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
Helpful - 0
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
Helpful - 0
573038 tn?1235394545
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
Helpful - 0
970256 tn?1249423974
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
Helpful - 0
573038 tn?1235394545
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
Helpful - 0
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
Helpful - 0
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