Dysautonomia With Cardiac Symptoms, But No Longer Pots, Anyone?

[amyksmith]

Hi -

That's a lousy topic title but here's my question: Has anyone else had some kind of progression in their autonomic dysfunction that has changed their cardiac symptoms?

I have auto-immune related autonomic dysfunction that affects multiple organ systems. My original diagnosis and clustering of symptoms was done at Mayo Clinic in MN.

At the time my cardiac symptoms most closely resembled POTS and so I began the reommended treatment plan for that. Since my illness was sudden onset, auto-immune related, they advised me that with proper treatment and lifestyle adjustments, likely my illness (really sets of symptoms in three organ systems) would resolve over about 18 months as my immune system returned to normal following a massive viral load.

That was five years ago.

Recently my POTS symptoms became increasingly difficult to manage and I had five complete syncopal episodes (suddenly fainting with none of the light-headedness/ warning signs I usually get before my BP drops) that resulted in a series of concussions and ultimately post-concussion syndrome. Yuck.

The post-concussion syndrome brought me to a different neurologist than previously, and anyway my POTS symptoms have always been followed in my current location by my cardiologist.

Anyway after a series of trials with different medication combinations trying to keep my BP more consistently high (which is still low for a healthy person) so that there's enough "room" for a sudden drop in systolic that I don't faint completely, my neurologist posited that my cardiac symptoms no longer resemble POTS and for a trial period we reduced my very low dose BB that was supposedly treating my tachycardia. Indeed, I do not meet the criteria for POTS anymore with regard to tachycardia.

So, here's my question -- has anyone else had their autonomic dysfunction progress such that their set of symptoms changed, particularly their cardiac symptoms? My neurologist confessed today that he is at a total loss now for how to keep my blood pressure consistently high enough to keep me consistently conscious. I've been homebound with a helmet on my head unless I'm lying down for seven weeks now and there's no end in sight. It's getting really frustrating.

I'm on the verge of going back to Mayo, but as I do not need a diagnosis exactly (I know the underlying cause is dysautonomia) and my experience there taught me that they are terrific about diagnosis and testing, but as they can't follow up I'd rather not go back. Also, I'm now on SSD and no longer have the salary nor savings I did to help with the OOP expenses involved in going there.

What I *think* I need is a neurologist who is more about being a clinician than into testing and who maybe has experience with other patients whose autonomic dysfunction progressed. But, really I'm asking you all for help since who else is there?

For reference, my other symptom clusters have not changed and are still reasonably well managed by the same meds and lifestyle changes. Also for reference, my blood pressure does not response to stimulants anymore. For a long time I took midodrine every four hours and it was ok, uncomfortable but ok.

More recently, my BP doesn't consistently nor predictably respond to midodrine, or other stimulants that my neurologist is prescribing off-label, like amphetamine salts (adderall basically) taken several times a day at max doses. Believe me, I feel effects of these medications in my head (ugh) and my GI tract (ugh) particularly, but careful monitoring and even graphing the readings shows that my BP isn't necessarily higher during the periods when those stimulants are most concentrated in my bloodstream. In fact, sometimes, my BP is at its lowest daytime levels during the medication peak concentrations.

I'm on 0.1 mg Florinef daily and have been for 6 weeks, no BP benefits evident yet - but the side effects really stink.

Well, any shared thoughts or related experiences would be appreciated. Thanks -- Amy

[looneymom]

Hi Amy

My son has been through much testing with an immunologist. He was started on an antibiotic and his blood pressures are staying up without salt tablets most days. My son has a high mycoplasma viral load.He is on Bixan and it keeps his blood pressure up.

Have you had any testing to check your viral loads? Could you have something in your system that has upset your ans? I am new to this virus stuff but from research, I understand it's hard to get rid of some viruses. An Immunologist can help with the testing.

[docradmd]

My Tachycardia has dramatically improved with exercise. There are days when tachycardia is non existent. Now , I mainly deal with GI issues- gastroparesis and slow motility-- which improve when I'm Laying down. I still get the skin color changes when upright from pooling. Yes my symptoms have changed. I supposedly have EDS as etiology. I wish it would all go away.

[amyksmith]

Looneymom -

Thank you very much. My doctors and I have been so focused for so many years on my symptoms but there's been no effort put into understanding the underlying auto-immune problem since before my Mayo diagnosis when I had a ten-day round of IV Ig which made no difference. Thanks for sharing your son's situation with me, it's given me something to think about and talk to my doctor about too.

Docradmd -

My tachycardia also improved with exercise but unfortunately exercise worsens my blood pressure, so I'm limited to nothing more than moderate exercise which is difficult since I miss it. The GI stuff is hard. I'm sorry to hear you're struggling with that. I too often wish it would all go away. But, if wishing made it so.... Good luck and thank you for sharing your experience.

-- Amy

[Chaos]

Amy- Since your symptoms came on after "a massive viral load' have you ever looked into ME/CFS as a possibility? There is more and more research indicating that there appears to be a "hit and run" type of event that occurs in a lot of us where there is a combination of a viral attack along with a genetic predisposition and probably some type of environmental factor which sets up a 'perfect storm' type situation for an autoimmune reaction that is self- perpetuating in this condition. Even if it's not ME/CFS, it may be some other type of NeuroEndocrineImmune disease.

Here is a link to the 2011 International Consensus Statement on ME

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

Here is a link to a Primer for Medical Practitioners for testing and treating ME

http://www.iacfsme.org/portals/0/pdf/primerfinal3.pdf

There is a lot of exciting research in the ME/CFS area going on right now so hopefully there will be some answers coming out in the next few years.

While I was diagnosed with POTS/NMH first (4 years ago, although I've had it for 7), my POTS doc currently acknowledges that he doesn't know what kind of POTS I have because it's not really fitting into any of the traditional categories. I've definitely noticed my symptoms have changed over the past many years and my BPs have been running much lower this last year in particular. Not as severely as yours however. Sorry to hear that you're having such problems. Must be massively frustrating.

I started seeing an immunologist who specializes in ME/CFS last year to work on the immune aspect of the disease as my POTS doc wasn't addressing those things for me. It seems to have been helpful in many regards although certainly not a cure yet.

Might be another area to explore if you haven't already.

Best wishes!

Edited March 26, 2014 by Chaos

[xRobin]

Hi Amy, it sounds like you have NMH more than POTS now. I was just watching the video Peter Rowe did a few years ago and he was talking about how when people have orthostatic dysautonomia it can cause a surge in norepinephrine which will cause the tachycardia in POTS, or epinephrine, which leads to the drops in blood pressure seen in NMH. Some patients can have both! Epinephrine is a vasodilator and it can cause fainting. I wonder if that is what is happening to you? Maybe clonidine might help?

I've been homebound with a helmet on my head unless I'm lying down for seven weeks now and there's no end in sight.

So sorry. That sounds dreadful. It is really hard to keep one's spirits up in these acute situations. I really hope you find a treatment plan which is helpful.