Help! I'm newly diagnosed and need advice.

Last week I was diagnosed with POTS, NCS, Sleep Apnea, atypical migraine and Fibromyalgia.  I had a profound TTT- within 5 mins.  I had an 85 bpm increase of my HR and then BP dropped to 60/40-I blacked out and they could not find a pulse.  When I came to the doctor said we'll give you medication and you'll be ok.  But I'm not ok.  Numbness, tingling, headache, constant ear ringing, lightheadedness, poor concentration, fatigue and hypersensitivity to light, sound and touch. I can't drive and I can't work.
  The doctors have given me heart meds (fludrocortisone and metoprolol) to regulate my heart, Cymbalta for the fibromyalgia and Immitrex for the migraine.  These have helped my heart and syncope but I am still not even close to normal.
I live in Clearwater Florida and there are no doctors here who specialize in Dysautonomia.  I've reviewed lots of previous posts about the best doctors but many are older posts.  I'm willing to travel anywhere for a more clear understanding of this illness and a better treatment plan.

In August I had no symptoms.  I was healthy, busy and active.  The tingling and numbness began on the left side of my face the day after a root canal where I had an abcessed tooth.  Then the symptoms migrated all over my body and developed into these seizure like episodes which I have come to know as syncope and I now struggle with, shortness of breath.  I am trying to rest in knowing God is in control but my symptoms are often frightening.  Does anyone know is this something that will improve?  Or is this a chronic condition I'll struggle with for the rest of my life?




I am new to the forum.  I'm a little scared and would appreciate any help or advice.

[beema36]

Welcome to this forum. I am sorry you are having all these problems. It is scary. I can tell you I know that Cleveland Clinic and Mayo Clinic both specialize in dysautonomia. Also Dr Blair Grubb in Ohio but there is quite a,wait to get into him I hear.

I noticed much of your symptoms started after a root canal and access. This caught my eye as my pots and ncs got worse and stayed that way after I had a tooth pulled and it abcessed. After that things didn't improve for me. I also have ms and am told mine is secondary to the ms. I also have fibromyalgia, osteoarthritis, and just this week was told I have psoriatic arthritis.

Some people get better and some don't. If you can go to any of those places I listed I am sure you can get good answers and a,treatment plan.  You are in the right place. There are many experts on here that can give you good advice. You aren't alone in this.
Beema

[Kellysavedbygrace]

Thanks for your response - I'm sorry to hear about your situation.  The abscessed tooth is an interesting connection.  Have you heard of this before?

Also, do you have any insight on what makes this acute vs. Chronic?

[beema36]

I'm sorry to say I don't know any connection with the abcessed tooth except that often these things start after an illness, surgery etc.

As for the acute vs. chronic aspect I am hoping some of our experts will be able to shed some light on that for you. If you are a reader Dr. Blair Grubb has a book called The Fainting Phenomenom(so?) that explains so much.

[Heiferly]

I don't know of any research showing a link between dental troubles in particular and dysautonomia; however, as Beema pointed out, trauma in general is a known trigger and that can include surgeries (both ones that went perfectly smoothly or ones that caused additional bodily stress like you going through having the abscess subsequently).  The prognosis of dysautonomia can depend on a vast number of factors including which form of autonomic dysfunction you have, the underlying cause (if secondary), what age you were when you fell ill, and others.  

I think it was a sign of inexperience with dysautonomia that your doctor told you "we'll give you medication and you'll be ok."  Unless his definition of "ok" is different than what most patients' expectations would be in being newly diagnosed with this.  I do recommend you seek further autonomic testing and consultation somewhere such as Cleveland Clinic (Ohio is their full center, but they have some more limited resources in their Florida location) or Mayo Clinic (Minnesota).  Vanderbilt (TN) would be another option; please let me know if you plan on going there and I'll give you some additional information.  The other option would be going to a specialist who isn't at a top hospital clinic; there are advantages and disadvantages to this.  If this is a consideration for you, again let me know and I can fill you in on some of the pros/cons.  

If you want to look for a hospital closer to you and find out what autonomic tests they do have (many top teaching hospitals have at least some semblance of a PARTIAL autonomic testing facility, it just varies WIDELY which tests they have and how experienced/skilled they are at interpreting these tests), let me know and I can give you a list of tests to ask for when you "cold call" hospitals.  I can also give you details on which department at the hospital you need to reach and who to talk to to get the answers (because most people in the hospital will think you're talking another language, lol).

I hope this isn't overwhelming.  We've all been where you are.  Being newly diagnosed is scary, and there seems to be SO LITTLE support from the docs and so few answers, compared with how many questions you have.  We're here for you, so ask away.  

As you read here, remember that each of our cases is different so just because you read about someone who is severely affected, it doesn't mean you will be.  Also remember, however, that the general nature of our symptoms tends to be similar regardless of our individual cases so it's often VERY easy for us to empathize with each other.  

It's a great community here.  Welcome.
Heiferly.

[Kellysavedbygrace]

Thanks so much.  I've ordered the book and another one on POTS.  

[Heiferly]

Sorry, I missed your acute vs. chronic question on my first read-through of this.  (Ah, brain fog!)

I'm going to post the answer in a new post so that everyone can read it, because I think this is a question that many people have.

[Heiferly]

Here's the link to the prognosis post:

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Some-General-Information-on-Prognosis/show/1627585