WBuffett

Has anyone with PoTS ever taken SSRIs or SNRIs to help reset their autonomic nervous system/improve their PoTS symptoms? If yes, which one(s) did you take? Were there any side effects and what symptoms did it help fix? My wife's doctor suggested Cymbalta, but there is not a lot of information out there on if it is of any benefit. She is hesitant to try it due to the horror stories of the side effects and withdrawal symptoms of taking SSRIs/SNRIs. Any feedback would be so appreciated as she is currently bedridden and is desperate for an improvement. Thanks!

Hi @cmep37 - thanks for this. My wife started with 10 different bed exercises starting at 5 reps per day and she has increased it up to 50 reps per day, but it hasn't helped. She is not doing any cardio, so maybe this is why it is not helping. Did you improve at all before you started doing the cardio? My wife is in menopause so that is not likely an issue wrt blood flow.

Hi @Hershey - so great to hear from you. My wife tried so many preventative migraine medications and nothing ever worked. Her issues that are most debilitating are the auras and vertigo - not so much the pain, although she suffers this as well. She was thinking that maybe that's why nothing really worked. Do you get auras and vertigo with your migraines? It is so great to hear that it has helped you so much. Did it work right away from the first injection or did it take a few doses first? Did you have any side effects from the Amiovig? Glad the Ivabradine is working for you as well. Do you have hyperPOTs? How does it compare to the other meds you have tried? Can you sit up or walk longer without suffering presyncope?

Hi @cmep37 - so great to hear from you and thank you for sharing your story with us. How long did you do your exercise program before you noticed a difference? My wife has been doing her bed exercises for 9 months and it hasn't really made an impact.

Hi @Pistol - when you say Ritalin gives you energy, do you mean it keeps you upright and allows you to stand/or sit longer? For IgG, do you know where they went to get it and is it a complicated process? I am not even sure if it is available in my country.

Hi @Delta - thank you so much for your thoughts and I am so glad that Propranolol is helping you to get your life back. My wife's heart rate is in the 50's from taking Midrodrine and it hasn't helped much at all. Is the purpose of a beta blocker to lower one's heart rate? Is there another purpose/benefit to taking a beta blocker if one's heart rate is already low from the Midrodrine?

Hi PotsieCrocheter - thank you so much for your response. In the last 10 months, she has not been able to get up to go to the bathroom or bathe on her own. She can move positions in the bed, and do bed exercises, so no bed sores, thankfully. She also has to recline in the car and at her appointments and the last time she had to go in a stretcher to the hospital. I am sorry that you have experienced this as well :(.

Hi @KiminOrlando - thank you so much for your response. My wife was diagnosed in 2010 with Hyperadrenergic POTS (tilt table test with POTS specialist) with high norepinephrine levels. She has been progressively ill for over 10 years, most of that time debilitated with POTS - she was also diagnosed with severe migraines, gastroparesis and Hashimoto's. She also has sensory problems (extreme sensitivity to light, motion, vibrations, noise and smells). No NeuroCardiogenic Syncope. Upon sitting or standing, she feels presyncope but gets enough warning to get down before she faints. She has fainted before when she couldn't make it back in time from the bathroom. In the hospital, in the fall, she had a MRI, EMG, many blood tests - everything was normal (e.g. no indication of MS, Parkinson's). The Mestinon made her feel stoned/out of it (in a bad way) on a very small dose and the Fludrocortisone made her migraines so much worse. She has not tried beta blockers. Her original POTS specialist was good with the diagnosis, but wasn't that helpful with a treatment plan and has since moved away. She is on a long waiting list to see a new one. I hope this helps for now to give a bit more information. I really appreciate all your help!

Hi @Pistol - I can't thank you enough for your response. I am so happy to hear that IV fluids are giving you your life back. My wife had IV fluids in the hospital but only a couple of times (1 litre of saline each time) and it didn't seem to help. But now I am wondering if it wasn't enough fluid and was not for a long enough time. How do you know what the right amount of IV fluids are to use and do you need to do it for a few weeks to see an improvement? Thank you as well for the study link on pubmed - very helpful. I have never given up hope that something would appear (a new drug or therapy) that would help my wife get her life back. Thank you for your compassion and assistance so far!

Does anyone currently have (or know of someone) who has severe POTS and can’t get out of bed or walk? My wife’s condition has progressed over 10 years to the point where she cannot sit or standup for more than 20 seconds without presyncope. It is to the point where she is living on a mattress 24 hours per day. She is currently talking 5 mg of Midodrine 3x/per day but it doesn’t seem to do much. She tried Mestinon and Fludrocortisone but she couldn’t tolerate either drug. She has also tried fluids and salt, stockings, Spanx, abdominal binder and raising the head of the bed. None of this has helped. She was hospitalized last fall for a month, doctors were flabbergasted by her condition. Doctors prescribed bed exercises for de-conditioning and the Midodrine, but it hasn’t done anything to improve her condition in over seven months. In fact, her condition continues to worsen. Has anyone been in this position and been able to improve. If yes, what did you do or take?