recent move to AZ --HELP

[auntissie]

I recently moved to AZ.  I have the hyperadrenic form of POTS and Ehlers Danlos.  I have been to the Mayo Clinic here, but my new insurance doesn't cover them and they are for diagnosis anyway.  Does anyone know of a good doctor who can follow-up and knows about these illnesses?  I also like to go alternative, if possible.  I've tried 4 different beta blockers and floreneff.  None worked too good on me.  I've got some other suggestions from the clinic but need a doctor to follow-up with.  I also have tremors and gait disturbance with severe weakness.  Right now, I use Emergen C for electrolyte balance the tramadol for pain.  I also take some herbs and vitamins.  These help, but I wish I could find a little more help.  Is there a kind, knowledgeable doctor who really tries to help out there?  Having such complex issues, takes someone willing to search for answers and try different things.  If I have to travel several hours, I don't mind that either.

[Heiferly]

I'm sorry to hear of your struggles of late.  Halbashes gave you the links to several of our Health Pages which are relevant to your questions, and some excellent tips on medications and finding specialists.  I see that you also mentioned an interest in seeking alternative medicine/therapies, if I'm reading that correctly?  Perhaps these resources may be helpful to you in locating something along those lines:

http://www.arizonahomeopathic.org/
http://integrativemedicine.arizona.edu/alumni.html
http://www.holisticmedicine.org/displaycommon.cfm?an=1&subarticlenbr=118

I hope PT on the foot is at least bearable.  We'll be thinking of you--keep us updated!
-Heiferly

[auntissie]

Thanks for your response.  I've tried several beta blockers and floreneff.  The floreneff worked initially, then my BP started going too high.  I retain fluid anyway without that.  Also my BP drops when trying to sleep.  I think that's why the beta blockers made me feel worse.  I'd have to get up and night and do isokentrics to get my BP up  at the same type having high pulse rates.  The last time I went to Mayo, a doctor recommended propronolol possibly with the floreneff.  But, I have yet to find a doctor willing to experiment.  I've recently broken my leg/foot and my search is going to have to be delayed even longer now.  I need to find something to help.  Just getting out of the shower, did me in today.  Naseau, dizzy, fainty, pulse rate etc.  Now, I'm just trying to eat or drink more salt and wear compression (on one leg and around the middle).  I don't really know what else to do.  I have apena, but the CPAP actually brings on an attack.  It causes me to have severe anxiety and I just can't seem to adjust.  I've been just nearly sit up to sleep, since I've gotten hurt.  I have to have the one foot hiked in the air and that isn't good either.  The pain meds are messing me up too.  Everything has gotten worse.  I think if I could get help with the POTS, maybe my recovery of the foot would go easier.  I'm not looking forward to the physical therapy--exercise is difficult before the foot.  But, I have to get the foot better and must do it.  The EDS is a hinderance too.  Very bad veins and pooling, poor circulation.  Hoping for some suggestions--it's like I'm on a desert island and I have to find resorces on my own.  (I did have one member contact me with the name of a Neurologist.)  So, there is a place to start.

[halbashes]

Unfortunately, I am not aware of any specific specialist in the Arizona area, but I would recommend seeking treatment from either a Cardiologist or Neurologist at a local academic teaching hospital.  A team of specialists will be more likely to treat the complexities of your symptoms.

Additionally, we have a list of Dysautonomia and Autonomic Dysfunction specialists in our Health Pages.
- http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

Which beta blockers have you tried?  Have you ever tried a drug called Clonidine?  Clonidine has occasionally been used with some success by members of our community with H-POTS.  A drug called Cymbalta, which is an SNRI has been used with some success.

Here is a link to our Health Pages containing other possible treatment options that your doctors may consider depending on your symptoms:
- http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Treatments/show/171?cid=196

Further reading our Health Pages:
- http://www.medhelp.org/health_pages/Neurological-Disorders/Further-Reading-on-Dysautonomia/show/696?cid=196