Katybug

Hi Everyone, This paper is a really good overview of POTS from diagnosis to treatments. There is also a table (table 2) that is a nice breakout of the major treatments, although there might be more current treatment available as well. It seems fairly thorough. I thought this might help some members understand their POTS better or be a good resource to give to docs who want a better understanding. Happy reading! http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

Hi Kris, I was just reading this article because I'm trying to understand the mechanism mestinon has on treating POTS. I remembered your question I this post as I was reading and thought this article might help your understanding of the norepinephrine, etc.. It's longish but a good read. The sections on Lab abnormalities, differential diagnosis, and pathophysiology are of particular interest. Hope this helps! Talk soon, Katie http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

It is my understanding that there is not another drug that has the same mechanism as florinef. Florinef is a synthetic replacement of the hormone, aldosterone which is produced by the adrenal gland. There are other drugs that can raise blood pressure such as midodrine and mestinon (pyridostigmine). I tried midodrine and it had no effect at all on me, which is apparently unusual, but there it is. I think a lot of people have better success than i did. I am actually about to trial mestinon as my neuro gave me a script for it yesterday. From what he said, it will increase bp and slow hr if it works. As a side note, my bp gets very low when I'm off of hydrocortisone or prednisone. My endocrinologist thinks my adrenals are sluggish. At one point the prednisone was the only thing that brought my pressure back up. However, this is probably not a treatment most docs would try. My joint pain was so bad that I was put on the prednisone and we realized it stabilized my bp by accident.

Here are links to two old threads on this topic. One has a really informative video...long but full of info. The other has a link to a thread that has the Alpha Delta Syndrome paper in it. http://forums.dinet.org/index.php?/topic/26652-strange-new-phenomenon-happened-today/#entry248257

Hi Tachy Matt, This is a common issue for dysautonomia patients. There was even a study of POTS patients that showed a phenomenon called Alpha Delta Sleep Syndrome. I'll see if I can find it and link it. I find that 3 things help me (two of which are unconventional): 1) My body needs a minimum of an hour, often linger, to be in bed winding down before I can sleep. 2) Against all sleep hygiene advice, I need to either put on a movie that I have watched so many times I can recite the lines. It seems like enough to distract my mind from racing with thoughts, yet, because I know what's going to happen I don't subconsciously stay up to see how it ends. The alternative is to turn on soothing instrumental music....no lyrics to sing along with. It accomplishes the same thing for me. 3) On really desperate nights (3-4 hrs after laying down), I will try a 1/3 of a cup of 1/2 caff coffee with lots of cream. This very tiny amount of caffeineseems to actually have a paradoxical effect on me and I fall asleep almost immediately. Again, that is a completely unconventional approach.

That is such fantastic news! I'm so happy for you!

Nowadays, the only symptom I get close to the end of my shot is a little acne on my face. When I first started the shots, which was pre-POTS, I would have normal premenstrual symptoms including some spotting a few days to a week before my shot was due. A couple of things I've been told by docs along the way... 1) The longer you're on the shot, the longer lasting suppression of the ovaries it has. This is why they warn women to stop the shot a minimum of a year before they want to conceive as it can take a long time for the ovaries to cycle properly if you've been on the shot a long time. (So, it makes sense to me that over time, my symptoms of the shot wearing off have gone away.) (Please don't anyone take this as a guarantee that it is effective birth control if you are late on the shot. That's not what I'm saying.) 2) My GYN Midwife and my former GYN doc both have offered to give me the shot as early as 11 weeks (which is considered medically acceptable ) if I needed it because my symptoms warranted it. My sweet spot is 12 weeks but it's nice to know I could get it a week earlier if need be. Other than that, I don't know any other information that would help this situation.

If I do a particularly strenuous activity (for me), and I get short of breathe, flushed, sweaty, and tachy, I will often have a very hard, pronounced pulse in my neck.

Thanks for this new information, Nymph! I've had some other medical issues come up so trying the quercetin has been put on the back burner, but I still have it on my pending list. This information is helpful! And, I'm glad you are getting some relief!

Hi smiles. I just Googled swallow syncope and came up with quite a list of information and several case studies. You might pull up the case studies to view the bibliographic information to find doctors familiar with this. I'm so sorry to hear you're dealing with this. Take care.

Thanks for the update, Sean!

I don't know why I didn't mention this before, but when my pulse pressure is narrow, I actually have a very weak, thready pulse and can not particularly feel my heart beat.

So glad you're getting to the right specialist! July will be here before you know it!

I honestly don't know. Other members have mentioned mast cell forums but I haven't bothered to go looking for them. Sorry.

I found it to be helpful to read this article thoroughly and have a solid understanding of mcas and how it is diagnosed, when i had to switch immunologist this past year. I was able to give my new doc more thorough information about my case. I have found this to be the most comprehensive article I've read. The figures and tables in this article are very relevant and contain a lot of information. I already had an mcas diagnosis but knew I was going to have to "prove the accuracy of this diagnosis" to the new guy. http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm

My POTS neuro became concerned when he took my vitals and it was only 16 pts difference sitting and then narrowed to 10 pts upon standing. I don't know what the official number is for too narrow but maybe that gives you some point of reference.

Hi chrm, I don't know where you're located, but several former members had great things to say about Dr Peter Rowe in Baltimore at Johns Hopkins, should you need a back up plan. He's pediatrics. Sorry I don't have any feedback about Dr Novak. Take care, Katie

A couple of thoughts.... I have POTS but I sometimes experience narrow pulse pressures. The symptoms, for me, feel exactly alike. You would need to take your BP during that time to check your pulse pressure. Also, my POTS neuro told me early on in my diagnosis that a study was done many years ago and that there was not a direct correlation in POTS patients in symptoms vs how tachycardic they were. So, you could, in theory have the same severity of symptoms at 120 bpm as 170 bpm, depending on how your body reacts to the tachy. I can personally say that I feel just as bad in the 120s as I do in the 150s.

Bigskyfam, Have you joined the forum at www.ednf.org? They have pretty good resources for docs in differentparts of the country but not a published list like we do. You would have to get on the forum and ask for the experts closest to you. In the meantime, I personally would ask the cardiologist for a referral to a cardio - thoracic surgeon to get that ball rolling for a consult. If she doesn't know what to do, the least she could do is give you a referral (of course, if she were really concerned, she would help you find a doc that does have a clue about this, in my opinion. ) There are people besides EDS'ers that can have this condition. Take care of you! Katie

Welcome, Everyone! We've had a lot of new members, lately!

I think it is totally normal to be scared and I'm glad you were finally able to say it. Do you need referrals for insurance purposes? When you say, "she's done", do you mean the cardiologist?

I liked the concept of Nuun and I liked several of the flavors. Unfortunately, it was the only thing I've had in years with artificial sweetener in it and it made me very nauseous. Original Gatorade/powerade/Skratch Labs do not do this to me, so I have to assume it's the artificial sweetener. The Nuun tabs were super convenient to carry in my purse so I always had them available to add to water. They are also more economical than Gatorade per serving.

Also, I'm wondering if a consult with a cardio - thoracic surgeon is in order? I don't know but it seems like that would be an appropriate specialist for this situation.

I'm so sorry! Could the cardiologist call and consult with the geneticist so they can get things going a bit faster either with a treatment plan or getting an appointment sooner? Healing thoughts and energy coming your way.

Hi, angelloz, Definitely hang in there. I was not great but stable for a couple years. Last year I started a major backslide. I am also in the process of revisiting things like infectious disease and rheumatology. In the meantime, my geneticist (desperate to find some answers for me) order bloodwork to test a long list of hormones...some previously tested, others for the first time. I received the lab report yesterday and it appears I'm all screwed up hormonally. I was shocked to see the results! So, the moral of my story (for you and me) is don't give up! You never know when the answers will appear in your mailbox! Katie