Katybug

Hi Andy, Don't have PVC/PAC. I just wanted to lend some support. You don't know how or even if this will effect your son. Try to take it as it comes. He may be totally healthy and not be significantly affected even if he does have EDS. And you never know what treatments will be available to us by the time he's old enough to appreciate a trip abroad with his dad. It's been hotter than blazes here in Maryland. Upper 90's with high humidity. Ick! Hiding out in the air conditioning! Take care, Katie

This is the best paper I've found to date on MCAS. It's long but complete. Be sure to review the tables embedded in the paper as they contain a lot of information. MCAS is a very complicated issue and hard to diagnose so I try to direct people to this paper as explaining it here doesn't really give the full picture. http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm

Just thought I'd mention this as I found it interesting and maybe another piece of the puzzle on the horizon..... At my immunology appt today, my doc had a new resident shadowing him. (Love it when new young docs get to learn about our rare diseases so future patients get better care! Yay!) When we were discussing my MCAS, he turned and explained to her that I have EDS (which she was familiar with! Yay, again!). He went on to tell her that there's a new theory being tossed around that the link between EDS and MCAS may be that the EDS makes the mast cells more delicate and therefore more unstable/easier to degranulate. I don't have any references (yet) but thought it was an interesting tidbit and would finally explain the link between these 2 rare diagnoses if they can verify the theory. I'm just happy they have a theory, because this is the first time in 5 years I've heard any theory on this at all.

I just read the additional info above. Many dysautonomia patients have slow guts/gastroparesis. But, I'm with you.....mine moves way too fast. Much of this part of my problem is from Mast Cell Activation Syndrome (MCAS) which is not uncommon in dysautonomia patients. I am on several antihistamines to help control it but I have some specific (and rather obscure) food triggers that it has taken years to figure out (rice, bananas when under ripe, grapes, pineapple, cilantro/corriander.) I don't have typical food allergy symptoms like itching or swelling of the lips, mouth, tongue or breathing difficulty. It manifests itself in nausea, vomiting, abdominal pain, and diarrhea. All of which can last for hours to days from one ingestion. It will also trigger presyncope/POTS, excessive sweating and flare my migraine.

I don't have this issue but it seems these are known side effects : https://www.drugs.com/sfx/vitamin-b12-side-effects.html http://www.livestrong.com/article/353055-what-are-side-effects-of-vitamin-b12-tablets/

Hi Kip, Glad to have you on the forum! Hopefully you will find the same fellowship that I and many others have through the years. ☺ It's so important to have people that can truly understand and relate! Katie

Haven't heard of this before but here's a long list of articles in Google Scholar talking about the NAD enzyme and how it relates to various disease mechanisms. https://scholar.google.com/scholar?start=10&q=nad+treatment+&hl=en&as_sdt=0,9

Hi Margaret88, Do you have a copy of the office notes from the appointment when the doctor diagnosed you with POTS? I would take that to the new doctors. If you don't have it, you should be able to get it from the doctor's office for a small fee but I would make that call this week so you have it in time for your initial appointments. The tilt table test is the gold standard for POTS testing. There is catecholamine blood tests but those should definitely be ordered and performed by a lab that knows the proper procedure....it's not just the basic blood test. It's supposed to be done first after 20 mins supine and then again after standing for several minutes. If it's not ordered correctly or the lab isn't familiar, it may not be done correctly. For more information on EDS diagnosis, please visit www.ednf.org. There are multiple types of EDS and they each have different diagnostic criteria. The Hypermobile type, in particular, is a clinical diagnosis and there aren't diagnostic labs/imaging for it. There is genetic testing for some of the other types.

I tried Adderall to combat the POTS fatigue. I did not get any benefit from it but also had no side effects either. It's not unusual for POTS docs to prescribe ADHD drugs for this even though it is off label. If you search the different drug names here on the forum, you should find old threads talking about older members experiences with these meds.

Womble, I'm sorry this is still unresolved. If the Ivabradine won't be approved by the doc, have you considered talking to him about other drugs used to treat POTS? Maybe being armed with information about the alternatives would at least give you some talking points to get a treatment plan together.

Glad that the docs are on top of this for you and your family, Womble! I know you've had some struggles with the docs on the POTS side, so it's nice to hear that you are at least getting some help with this issue.

That's a good point, Corina. I don't doubt the science in these papers, but like anything else, it's a cost-benefit analysis we each have to make for ourselves. For example, I hate living on cortisol replacement steroids but I'm simply not able to function without them.

Sue, How goes it with the Mestinon? I'm on it but it hasn't affected my bowels at all. I'm prone to diarrhea and my bowels moving too fast and this med hasn't caused anything to get worse. It does help me a bit with my hear rate for 2-4 hrs per dose. I'd like to hear how you do on it. I hope it's a good weather report! ☺ Katie

I don't have asthma but I do have mcas. I have a few herbs and spices on my list of things that can cause a mast cell reaction. Anything can cause an allergic reaction and because of that I would suspect could bother your asthma. If this is new for you, you might want to check in with your doctor just to be on the safe side.

As an EDS patient who has flacid vasculature, I'm not sure it's a bad thing that my arteries "don't relax" due to the salt. We (my docs and I ) constantly search for ways to keep my vasculature constricted. Salt helps me a lot and after hearing this video, this could actually be a benefit for me and not a bad thing. This video is aimed at the general population and I would be hesitant to make changes to my salt intake based on this information and knowing that the way POTS patients react to treatments can often be much different than the general population and even to each other.

I had a nerve conduction test pre-POTS on both of my legs. It was not pleasant but bearable as targs66 said. It certainly isn't the worst thing that's happened to me. Generally, when it's performed on POTS patients, I believe they are looking for signs of neuropathy which can be an underlying cause of POTS.

I always got terrible indigestion from bananas and eventually started to have mild mast cell reactions too. Interestingly, if I have some banana in a smoothie with other fruit or if I have cooked banana, such as in baked goods, it doesn't bother me. Recently, I read somewhere (sorry, I can't find the source now) that the natural enzymes in bananas change as they ripen and that less ripe bananas can often upset a stomach but ripe and just starting to get brown spots are much less likely to cause the issue.

I have HEDS (3) and my geneticist and cardiologist require me to have an Echo annually. While aortic root dilation is more prevalent with Vascular EDS, we are still at higher risk than the healthy population.

Welcome aboard!

I have chronic daily migraine so it's hard to say if the salt intake affects it as I haven't been migraine free since August. I can say I can only take florinef every other day because of the migraine. I am a little different with my migraines, as I tend to have low bp when my migraine pain becomes severe and increasing my bp tends to ease the pain some. I do space my salt through the day. I actually crave salt (and always have even pre-POTS) so I can eat a lot of salt in one meal.

I think it's fairly normal to have significant variations in vital signs for dysautonomia patients. I know I have it and feel like a yoyo some days. That being said, if this is new for you, you may want to check in with the doc about it.

Don't know about this one but this seems like a good site to start learning: http://www.dystonia.org.uk/index.php/about-dystonia

http://circ.ahajournals.org/content/127/23/2336.full

The br stands for bromide. Pyridostigmine bromide is the full generic name for Mestinon. There are references to a "controlled release ", "sustained release", and "extended release" version but it can't find specific info on each (which I find odd.) My POTS neuro said that the goal dosage for POTS patients is 60 mg 3x/day which I have also read in some papers I read regarding the use of mestinon for POTS. I'll see if I can find them.

Hi! My neuro told me is was likely to feel less fatigued and have more energy if the mestinon turns out to be an effective treatment. I can't honestly say I've noticed it but I'm having other complications not related to mestinon that have prevented me from increasing my dose. The first few days I took it (1 tablet 1x/day), I did have a 2-4 hour window where I felt pretty good. I'm not sure if it was a result of lower HR, less fatigue, or both. But, I can say, that I really want to get to a place where we can try me at the full dosing schedule because those 2-4 hours were the best I've felt in a long time. Currently, the daily migraine has taken over my life so that is taking precedence in my treatment right now.