Sushi

Dr. Systrom (principal investigator on this study) has prescribed Mestinon to about 300 patients with good results in dealing with symptoms. I am currently trying it but it is taking time to titrate the dose up to therapeutic levels as Mestinon has gastro side-effects for many. So far though I do feel that my crashes from exceeding my energy envelope are milder. Is anyone else trying this?

Wondering if this applies only to POTS or if the neurally mediated hypotension group have this too. For those of us with NMH, it is sometimes frustrating that the research seems to focus only on POTS.

I live at about 6000 ft (high desert, dry) having moved here from sea level. I have not noticed any BP changes (I am NMH) but have noticed a lowering of oxygen levels. Functionally this climate is better for me because it is arid but I’d guess the response to altitude is going to be individual. When I’ve been in Santa Fe it hasn’t bothered me but when I was I the high Himalayas I felt really awful, though that was much higher.

I add more Himalayan pink salt to my daily rehydration mix and it doesn’t bother me. I wasn’t sure that salt was helping me until a cardiologist told me to go on a low salt diet (for a condition that would normally be appropriate for. ) It was a disaster and he agreed that I should continue with an extra salt diet.

https://www.thelily.com/a-chronic-illness-upended-my-life-im-still-trying-to-find-a-new-normal/

@p8d The main symptom I get from too high vagal tone is orthostatic intolerance and the clonidine made that much worse as well as making me extremely tired. Hope that clarifies it.

Clonidine was truly awful for me and I stuck with it for a month. In my case, I’m an outlier too too high vagal tone—I need to increase my sympathetic tone to stay on my feet. Anyone have ideas on how to do this? Strattera worked like a dream for some years but I no longer tolerate it. Midodrine spikes my BP even at 1/4 of the lowest tablet made (it is metabolized through CYP2D6 and I have a SNP there). I’d guess that Mestinon would affect me like clonidine. Has it been true for others that Mestinon and Clonidine have a similar effect.

For me the most effective treatment for OI was strattera, a norepinephrine reuptake inhibitor—perhaps the same principle? This is known to help some patients who are parasympathetic dominant as I am. The Dr. Coglan at UAB whom they mentioned, was Dr. Randy Thompson’s (dysautonomia specialist in Pensacola) doctor and mentor. At least the article talked about dysautonomia in the popular press!

I really am and OI is so much better!

That is really low! What does your doctor say about it?

Have you ever been evaluated for arrhythmias during an episode like that? You can get a pretty good idea as to whether you are in a normal rhythm by checking the rhythm of your pulse with your fingers. An arrhythmia is very irregular from beat to beat—beat, beat, slight pause, double beat—that kind of thing. A Fitbit or an HR monitor will not give accurate readings then, but an Apple 4 watch or a Kardia Mobile device will. They actually take EKG’s and computer-read them. You can email the EKG to your doctor. I’m bringing this up from my personal experience of Afib. Before I got a Pacemaker my resting HR was always in the 40’s. After I got it my EP and I experimented with different resting HRs and my OI was noticeably better at 70 rather than the standard 60.

Could that be another form of dysautonomia than POTS? Don’t you need to have a 20-30 rise in HR on standing to have a POTS diagnosis? I had all those symptoms minus hypertension on standing and had bradycardia rather than tachycardia. I say “had” because I now have a pacemaker.

Hmmm. I just talked with a patient who said that she sees him now and then. Did you tell them that you are an established patient with him? I have not heard of anyone at UAB but I supposed that there could be a new hire. Maybe you could ask them for a name. Others can tell you more about Vanderbilt as it is a long time since I considering going there. Hope you find someone.

I have a mutation in CYP2D6 and I did have a problem with Benadryl raising my BP, though the occasional normal dose doesn’t seem to bother me.

I used to see Dr. Thompson when I lived in Pensacola and he helped me a lot. I hear from friends that he is back in practice though if you don’t live in or near Pensacola you could end up traveling to see him only to find that he has had to cancel appointments that day as he still struggles. Good luck.

I had my mitral valve repaired with a MitraClip on June 19th followed by a night in a cardiac step down unit. I tolerated the procedure well though recovery has taken a while—as I expected. I had a followup appointment today and another echocardiogram—the MitraClip is still perfectly placed and the level of regurgitation has remained as “trace” since the procedure. But importantly, my OI has improved tremendously—no more pre-syncope every time I stand up. I am even able to do a tiny bit of yoga. Take away: if you have any level of mitral regurgitation, make sure that your doctor is watching it with regular echocardiograms. Also, for me, severe regurgitation was definitely associated with orthostatic hypotension. I am so happy to be functioning better! 🙂

I use one and I got it with a medical discount through an MS site, Active MSers. They test and rate all the different types. Here is a link to their reviews: http://www.activemsers.org/tipstricks/choosingacoolingvest.html I wouldn’t manage the summer without one.

I have used it though I got it from a recommended source. It worked pretty well but lost its effect after a couple of weeks. Your post is a reminder to try it again.

It could also be an arrhythmia. My HR graph would look like that when I was in Afib. Do you have a model of Apple Watch that will detect arrhythmias? I use a Kardia Mobile to check if I detect a wonky HR.

Since PACs and PVCs are a rhythm problem rather than a rate problem, not sure how much a beta blocker would help. I take propranolol but in combo with a rhythm drug. Since rhythm drugs have more side effects and are more “heavy duty”, I don’t think they are usually given for PACs or PVCs. There are good results from high dose taurine and magnesium though. https://www.ncbi.nlm.nih.gov/pubmed/16797868 as @FileTrekker mentioned.

Hi Scout, Thanks for the good wishes. I am not really sure how long it took to progress from mild to severe. It was first documented over 30 years ago though I probably had it from birth. I had echocardiograms every couple of years for a long time and it was always mild. Then I had one a out 4 years ago that was mild to moderate. The cardio wasn’t concerned and didn’t watch it with yearly echocardiograms. Then it seems to have triggered Afib (at least that is what my EP thinks). She did an echo in January followed by a transesophogeal echo for a better look, and it showed as severe or moderate to severe depending on what cardio read it. After that I was referred to get it repaired.

Thanks. Yes I had to have a heart cath as part of screening for this procedure. It went well except for the difficulty getting the catheters in due to my tiny, deep veins. At least I’ll be under anesthesia for this in the coming procedure. The most difficult part of this procedure for the patient is the six hours lying flat on your back without moving in recovery. But I am hopeful for the outcome and even if I don’t get symptom reduction it is necessary to prevent damage to the heart.

Hi everyone, I haven’t posted for a while but wanted to mine your great experience. Has anyone had their mitral valve repaired with a MitraClip rather than having open heart surgery? I have severe mitral valve regurgitation after a lifetime of mild. I thought I’d never have to have valve surgery! I am scheduled to receive the MitraClip in two weeks. The cardio-thoracic surgeon felt that, with dysautonomia, pretty severe OI and Ehlers-Danlos syndrome, this less invasive procedure would be better. It is done trans-catheter through the femoral vein, so no incisions, no heart lung machine and much shorter recovery. My question is whether it will help with the pretty severe OI and other dysautonomia symptoms I have? Who knows...more blood flowing in the right direction seems like it could help a lot of things. So if anyone has had this procedure, I’d love to hear your experiences. Thanks!

I have a question about people's experience with ablation for Afib. I have NMH and have a Pacemaker for sick sinus syndrome. (It does help me with OI--it is set for 70). I've been taking the antiarrhymia drug flecainide to prevent Afib but after 2 1/2 years it is starting to fail and my EP just doubled the dose. From everything I've read antiarrhymia drugs will all fail after some years and they do have side effects. I see my EP tomorrow and want to consider an ablation as I am getting older and don't want to be left with a history of failed drugs when the risk of ablation has gone up due to age. I remember that Dr. Grubb used to say that there were only a few scenarios where he would recommend an ablation and I wonder if Afib is one of them? I'd assume that with dysautonomia the recovery would be more difficult. Does anyone have experience with this? Thanks!

Good going Ernie! I find a huge difference between biking outside and on a stationary one inside. I use an ordinary bike, just because I already have one, with tight bike shorts to help with the pooling. Hasn't bothered me yet. It is freeing, kind of like flying. Here's a tip for recumbants though: you are on the same level as dogs and they find that cool--you may not. Try carrying a squirt gun with half vinegar, half water if you think you might be nipped. They learn fast.