newly diagnosed

[ruth513]

Hi all been reading through all the posts and thought i say hello i was diagnosed with POTS yesterday after months of  months  of being ill with a vast array of symptoms
After a fainting spell landing me in hopspital a nice nero up there quickly picked it up while i was laying down i was fine pulse at 70 as soon as i  stood up it quickly went to 167 no wonder i was so dizzy for months
i was on the wrong forum GP thought MS
just thought i would say hello and do some reading as never heard of it before and nor has my GP
ive been started on beta blockers and im also having b12 injections as it was low thats got to be ivestigated into aswell but at least im on the right track now
Ruth

[evo123]

Sorry to hear you have been suffering, but I am glad you have a diagnosis x

Please take a look at our Health Pages here (the link is below), they are a wealth of information and may answer many of your questions.  But, please feel free to ask away.... xx

http://www.medhelp.org/health_pages/Neurological-Disorders/list?cid=196

Also, take a look at the trackers available here for you to keep track of your symptoms:

http://www.medhelp.org/trackers/list/196


Regarding prognosis, this all really depends on the cause of ones POTS and whether it is primary or secondary.  

I have recently attended the STARS patient day here in the UK (I will post a thread on this when I am feeling a bit better) and they discussed POTS, syncope and the DVLA regulations.  Primarily, the main focus was on syncope, it's cause, and frequency.  The doctors discussing this pointed out many 'flaws' in the regulations and basically believe that it is an individual situation.  For example - a high number of POTS patients will not pass out whilst sitting and generally ae not dizzy in this situation either, therefore to revoke their licence due to POTS would not be appropriate.  But if one has POTS and is dizzy regardless of position and has a recent history in fainting whilst sitting then a licence revoke would be deemed appropriate.  (if that makes sense!!) xx  

xx

[ParrotPal]

Hello Ruth.  I am relatively new to this forum as well.  I had "unofficial" dysautonomia, but have just returned from the Mayo Clinic where the diagnosis was made official, and includes POTS as well.  What I learned about whether the condition will go away is incomplete.  I am waiting for my follow-up appointment with the neuro specialist that evaluated me and is still awaiting the completion of one more test.  However, as far as the POTS goes, the electrophysiologist I met with said that there are medications and lifestyle adjustments that should help, but it didn't sound like it could be cured, as I understood (but I am still in the learning phase and have some more testing to complete for him too).  I am in a similar situation as you and regarding being on leave of absence from work and will be curious to read the replies you receive.  Be patient and kind to yourself.  Read the excellent info on this site.  There are so many resources that people have pulled together, and I have found no lack of help in getting questions answered and suggestions.  

Be careful and don't be a martyr.  

[ruth513]

hi and thank you
thanks for the link will have a look
I am starting to regonise a few triggers well apart from just standing up lol , lights esp ones in supermarkets , heat and certain noises
I have a few questions if you dont mind
Do you know if this condition will go, away get better or am i stuck with it
another question is driving my GP says i cannot not drive and  have to inform the DVLA is this the case
  one more as ive been of work since April and have now been signed of till Jan and even thats a wait and see is there any help out there,  finacanly i mean, as now gone down to half pay
Many thanks Ruth

[beema36]

Ruth, Welcome to.this forum. I am glad u got a diagnosis and r on treatment. There r lots of really nice and well informed people on this forum that I am sure will be of great help to u.
Beema