davecom

Interesting - I have the opposite problem. My heart rate does not seem to respond normally now that I am on atenolol. Recumbant biking, which has been bringing me to 130 max the last week and a half now only brought me to 102, but I am actually more tired.

Seems counter intuitive - one is vasoconstricting and one is vasodilating, yet this is the new regimen I am to start. Anyone find both together helpful? What has your experience been? I am supposed to be starting 12.5 mg atenolol with the 10 mg 3x a day midodrine I'm on although I'm thinking about holding off since I didn't take midodrine for most of the day today for the first time since i started and my head felt much better but I had two extreme sudden tachycardia events 200 bpm+ out of nowhere (that quickly went away) and I had never had anything like that before. Could my body have gotten so used to midodrine? I thought it was short acting.

Here's the drugs.com interaction: ranitidine ↔ midodrine Applies to: Zantac (ranitidine), midodrine Theoretically, the coadministration with midodrine may result in decreased clearance of drugs that are primarily eliminated by active tubular secretion such as metformin, cimetidine, ranitidine, procainamide, flecainide, quinidine, and triamterene. The proposed mechanism is competitive inhibition of renal excretion by desglymidodrine, the active metabolite of midodrine. However, clinical data are lacking and no supportive experimental evidence exists. Patients receiving midodrine in combination with drugs that undergo active tubular secretion should be monitored for excessive effects of one or both drugs.

I have this same thing and I've noticed despite giving me goosebumps everywhere else, midodrine actually helps! It's weird how the right hand is so cold and the left hand is not buy I'm a little relieved to see others have this - I was afraid it was my aortic coarctation and not my dysautonomia!

Very curious to see if this helps anybody with POTS. Please do report back! I don't want to be the guinea pig with the $150 sheet right now.

So happy to hear that! Tha is proof of progress that a test can't give you!

Thanks for the replies guys. Makes me much more optimistic than te thread on longevity.

I think it was just drugs.com interaction checker, but I also saw it in the documentation for midodrine - says cimetidine is an interaction because it affects the something cp 450 enzyme system (got that all wrong cant remember exactly, stupid pots), and I know zantac was designed to avoid the cimetidine (Tagamet) problems in that regard but still does affect them, which is probably where the interaction is coming from.

I have a small aortic aneurysm (for a different reason - caused by the placement of my aortic stent for aortic coarctation) and I want to just be encouraging and tell you not to worry too much. As long as it's monitored and not currently causing you issues, it shouldn't affect your life greatly. Mine has stayed about the same size for 10 years. If it's annually monitored, you will be well aware before an intervention is needed (if one ever is) and one may never be... But with your background you probably are already well aware... Just wanted to say that this particular part of your situation does not necesarily need to be as bad as it may seem thinking about it.

I'm taking both and I've read about a reaction between the two that may slow the absorption of midodrine. Has anyone else experienced this? I think I may be having it. I inevitably must take them within two hours of each other.

Is there any news? I see the site has not been updated. It says February was the completion timeframe. I hope they didn't choose not to post results because they ******.

I've seen scattered threads around, but there is there one place where there are a lot of detailed stories of recovery? I guess obviously those who got 100% better are less likely to be hanging around these forums anymore.

Some test results for those interested in my case: - N-methyl-histamine urine 24 hour: normal I guess this makes MCAS a lot less likely? - Metanepherine urine 24 hour: normal I guess this basically rules out pheochromocytoma? - Exercise stress test: normal - finished the increasing hard biking with a heart rate in the 160s The attending doctor actually asked me after if I was an athlete. The biggest other result for me has been lower heart rates with walking. The only change is I have put back on a total of about 10 lbs (now 170) and my PT brought me a recumbant bike and I'm now doing 20 minutes a day on it. I've been doing more salt loading too (probably averaging 3-4 grams a day). I also am able to walk for about 20 minutes a day (split up between multiple sessions, the longest now 12 minutes). An interesting result is my heart rate actually goes down with walking. If I stand up in place for 2 minutes, my heart rate will go to 150ish. If I start walking, after 2 minutes my heart rate will go down to about 100. At night or an hour after a midodrine dose it will even go down into the 90s and occasionally dip into the 80s with walking. I heard before that there maybe circadian rhythm element to some POTS. Which subtype is that? Or is it just that the midodrine doses I take throughout the day (3 doses, 3-4 hours apart) are cumulatively helping me at night? I thought it was shorter acting than that, but then again with a half life of 3-4 hours, it could be somewhat accumulating by the end of the day I guess. My worst current symptom is the constant head pressure, headache, dizziness, brain fog, irritability, and difficulty thinking when sitting upright and this continues for the entire day. Chest pain is a bit better. Breathing problems are a little better (no jinx please). Acid is worse. I am thinking more and more that my type of POTS is highly related to hypovolemia. Hence, why when I walk the heart rate gets better - things just start flowing more to the brain. Also, I think it explains my head problems when just sitting (but not lying). More tests on the horizon in the next 4 weeks: tilt table, ultrasound of that narrow jugular vein, autonomic neuropathy skin test, anti-gangliotic antibodies blood test. I am going to be trying a beta blocker (atenolol) at a low dose of 12.5 mg starting in a couple days.

I had a seasonal flu vaccine that caused my arm to be totally useless for a week right before I got POTS (couldn't even open the car door/lift a laptop). Just another possible trigger.

I noticed that a few of you are working with a geneticist. How did you find him? How expensive is it? What is a feasible way to get testing on one's own for something like Marfan's, EDS, or other connective tissue disorders? I have noticed that 23andme does not cover these genetic disorders. Is there another testing service that does?

I have had an MRV showing right jugular vein narrowing and a follow up mri showing possible thrombosis. I do not know if this is related to my dysautonomia.

I find this very interesting since I have a confirmed hypoplastic(mrv)/thrombotic(MRI soft tissue of neck) right jugular vein. I know Dr. Diana had this procedure. Has anyone on this board? Does anyone know anyone else with POTS who did? Doctors in NY who do it?

Thanks for the replies everyone. It was very very helpful. I am avoiding Zantac last night and today. It is a challenge but hopefully these tests will be worth it.

Okay, I respect that and I will just post test results here in the future and general discussion/thoughts about my condition instead of day-to-day happenings. I think it would be very cool if a separate section opened that was for journal/blog/daily living/overall type of updates. This is the best audience to really understand and appreciate each other's daily struggles, frustrations, and journey

The genetic front is surely as important for our disease(s) as it is for any other chronic condition. Let us know how your research goes! In a not so long ago healthy life I studied computational biology as a large part of my graduate studies. I hardly have enough brain power left to string together these sentences, but I'm fairly sure focused researchers could find some interesting genes in our pool!

Hi Guys, Thanks for the replies. I was tested for H.Pylori on endoscopy biopsy - negative. Been down a ton of roads back a few months ago with gastroenterologists on the acid front including some low acid treatments/trials (apple cider vinegar). The thing that has helped most is Zantac, so pretty sure it is high acid and related to the dysautonomia or whatever underlying virus/condition is bringing on the dysautonomia - but thanks for the suggestions there. Corina - will keep that medicine in mind. Last night and today so far were absolutely horrible. I had another nosebleed last night (this time on the other side) that I woke up to a little past 3 AM and continued trickling for many hours. I got very cold during it. My blood pressure at night and during the morning when I first wake up is quite low - 128/62 sort of numbers, so it seems somewhat unlikely that midodrine is the cause. I have a humidifier on and am using saline... I wonder if it is midodrine constricting blood vessels during the day and then them dilating back at night that is causing it. Visiting nurse was perplexed since blood pressure is not high enough to be causing it. At home physical therapy came for the first time today. I continue to do even worse. I could only walk for about a minute with him and heart rate got to 148. This was 2 hours after my first midodrine dose. He was perplexed. It was even over 100 just sitting down. He said I should work on just standing in place... so sad when I walked for 10 minutes with a heart rate in the 90 to 110 range just 2 days ago. They're getting me a home healthcare worker next week. Importantly - Blood Pressure confirmed by both the visiting nurse and physical therapy definitely is not really dropping when standing and is actually going up after walking around. So the idea that I have orthostatic hypotension is probably ridiculous. The cardiologist I saw yesterday called today to say he felt I should be tested for more underlying conditions - sjogren's syndrome, pheococrytoma, carcinoid syndrome, etc. He is going to call my primary care doctor to facilitate that. I am greatful that he is at least thinking about the cause. Heart rate seems to be in the 90s often even sitting today... and I feel so slow - now I know that brain fog that others are describing. It is horrible. My online chess rating has fallen 100s of points (I couldn't care less, but is just an example of how my mental capacity is literally being hurt0. This is the ultimate disease, one that affects your heart and your brain.

Is it safe to take an antihistamine during this test or will it affect results? I can't find any info online. Can anyone point me to a resource online that states one way or the other?

I've had the same exact thing going on since this all started. Some nights it's better than others. Benadryl has helped me sleep.

I just got the discharge papers from the Boston hospital (which also has the discharge papers from the NY hospital) and there are four pieces of interesting information: The NY hospital recommended I be tested on an outpatient basis for: - carcinoid syndrome - pheochromocytoma Boston's discharge papers mentioned: - the aortic stent is impacting a bit on the esophagus creating some turbulence, but they guess it is not the cause of my symptoms and say that they also guess it has been that way a long time. I think it may be impacting now due to the weight loss causing a loss of fatty buffer tissue and was not originally since I never had this feeling there before! - The conclusion of the neurology team was Dysautonomia All things I did not officially know. I'm going to try walking again later today. I just took my last dose of midodrine at 12.5 mg.

Hi Rylen, When I first read your story it sounded a bit like how mine began, but then it just got better before it got bad! My flawed, uneducated, guess is that you may have some very minor intermittent POTS that periodically flares from external stressors such as viruses. As an outside observer, reading all of your posts, it seems to me that the best thing you did for it was extensive exercise and fluid intake. I wouldn't be too worried if I were you. It's been 3 years - if you were going to develop a bad case I think it would've shown by now. It seems the trigger event for most people leads to a sudden onset and then gradual digression. You didn't have that - you had a sudden onset, a slight decline, and then a return to normalcy followed by minor setbacks. Again, I wouldn't be too worried, I think your case would have already presented itself as severe by now if it was ever going to be that and I would keep up with the sports drinks and exercise. But who am I to give advice, I'm sick! This is not medical advice, just lifestyle advice.