one of my articles on POTS & Pregnancy:

Below is a link to a peer blog who invited me to write a guest post on her site about POTS and pregnancy. I share my experience/advice here:

http://lifeasgriki.blogspot.com/2013/01/pots-pregnancy-case-study-from-patient.html

Kingsley (the site owner) also has POTS and shares some good things on her blog, too. Check it out!

Mestinon for POTS: A Trial

Hi Everyone,

I have recently ended a 3 month trial of the following prescription drug: Mestinon (Pyridostigmine – http://en.wikipedia.org/wiki/Pyridostigmine) It is most commonly used to treat patients with Myathesnia Gravis. It is indicated for some POTS patients off-label. One of the first prescribers of this drug for POTS patients was Dr. Blair Grubb. His research has shown a genetic disposition is some POTS patients that causes problems in the function of acetycholine receptors. “Mestinon works by inhibiting the breakdown of acetylcholine. Acetylcholine is the main chemical messenger of the parasympathetic nervous system. Some POTS patients may have immune systems that are mistakenly making antibodies that are plugging up acetylcholine receptors. Mestinon works to unplug these receptors by allowing more acetylcholine to remain at the neuromuscular junction. Mestinon is particulary useful in patients who have the postviral, paraneoplastic or autoimmune forms of POTS.” (Dr. Blair Grubb, 2002) The parasympathetic nervous system is part of the Autonomic Nervous System (ANS) so it makes sense as to why a problem with this could cause Autonomic disorders. In my opinion, I could also see how this drug may help Dysatunomia patients that have gastroparesis.

My neurologist is very much on the up-and-up with alternative medical treatments for POTS and reccomended this to me last year when I was really struggling with my symptoms. I reached out to a few of my friends with POTS who also take this medication and they said they did notice that it helped in some ways and they notice it even more so if they forget to take it. The reviews online seemed pretty promising, so I decided to give it a try.

I started on a low dose of 30mg 3x a day for two weeks and then increased to 60mg-60mg-30mg (per day) for the remainder of the three-month trial (10 weeks). Initially, I experienced the following side effects:

  • headache
  • anxiety
  • increased brain fog
  • muscle weakness

However, these side effects went away after the first week or two and increasing my dose went smoothly from that point on. In hindsight, I would say that this drug did help me a little bit. I can’t really pin-point how it helped and no particular symptom seemed to go away or anything too significant. I guess the best way I can put it is that Mestinon “took the edge off”. It did SOMETHING but ever so slightly and I am not sure exactly what it was doing. What I noticed most what that it did make me feel better during periods of post-exertional malaise. During these instances, I would recover a bit faster and not feel so awful. Because of this reason, I will continue to take it unless anything changes.

The difficulties for me with the medicine was remembering to take it, and taking it with food. Since you have to take it three (sometimes four) times a day it’s easy to get busy and forget. I would have to say that the only inaccuracy in this trial would have been on the days where I forgot to take all of my doses.

Overall, my advice would be for any POTS patients struggling with symptoms to give this drug a try WITH approval from a neurologist. This drug may or may not be appropriate for some patients, so always educate yourself beforehand and get advice from a doctor you can trust.

If any of you have tried this drug, I would love to hear your experiences (good or bad). Feel free to leave them in the comments sections or e-mail me personally at hopefulhillary@gmail.com

Good luck!

H

Physician List

Hey everyone,

A lot of you have asked me about finding physicians in your state or country so I wanted to share this — I came across a Physician List off of The Dysautonomia Connection website and the list is very extensive and it’s international.

Hope this helps!!

http://thedysautonomiaconnection.org/physician-list/

For E.D.S. Patients:

Below is a link to another blogger who has done extensive research and treatment for her E.D.S. (Ehlers-Danlos Syndrome) and subsequent POTS/Dysautonomia. She has seen tremendous improvement and healing. If you have a connective tissue disorder and/or POTS caused by or related to E.D.S., you may find this website helpful and informative. I would love to hear your feedback.

http://www.lessflexible.com/

A Dysautonomia/POTS Doctor worth mentioning

In the video in my prior post, there is a physician named Dr. Svetlana Blitshteyn who is very knowledgeable about POTS and its pathophysiology, its misconceptions, and its treatments. I wanted to attach a link to her website, as I had the opportunity to consult with her via phone and found her to be very helpful and informative.

http://www.drblitshteyn.com/

She is taking new patients, but also does phone consults for those who are either too sick or too far away to see her in her office. For those of you struggling to find a good POTS doctor, I would recommend utilizing her services as part of your process.

POTS Documentary

Above is a great documentary on POTS with testimonies from patients but also very educational input from physicians. It also does a good job of explaining POTS and would be a nice resource to share with friends and family members of those with POTS to help them better understand what is going on with this condition.

Dysautonomia Pregnancy Stories – SHARE

Ladies (and men whose significant others have Dysautonomia) -

As a Dysuatonomiac who recently experienced pregnancy, I am interested in hearing others’ stories of their experience with pregnancy and Dysautonomia.

I want to partner together to raise more awareness. Awareness is critical for Dysautonomia. I know we all want more research done so that we can have better treatment options and more informed physicians.

We are not powerless. Knowledge is power.

I am asking any of you who have a story to please share it with me – either here on my blog, or by sending me an e-mail: hopefulhillary@gmail.com

Thank you!

H

 

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