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!

5 hours ago, cmep37 said:

I would say 9 months is plenty of time to notice a difference.  Has your wife been able to increase the amount of exercise she can do during this time?  I started with 2 minutes once a day, then after a week 2 minutes twice a day gradually building it up until I now do more than an hour of mainly recumbent exercise plus a 10-15 minute walk or recumbent cycling every day.   Any more than this is too much for me, miss a few days and I feel much worse!  It wasn't easy to increase - there were days where I just wanted to give up but I'm glad I persevered.

One other thing I thought of is whether your wife is still having periods? Apologies if this is TMI but my periods were very heavy and anything that reduced the amount of blood I had in circulation was a bad thing.  As a teenager I only had POTS symptoms during and just after my period leading me to think my problems were gynae related.  I have a Mirena IUD which has more or less eliminated my periods although I know they don't suit everyone, particularly if you have EDS.   Even just running packs of the pill together to reduce the number of periods would be something to consider.

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. 

19 hours ago, Hershey said:

I am so sorry your wife and you are going through this. I have found like @Pistol hydration therapy has helped immensely. My doctor prescribed the therapy and I do 3 times a week. I had a port placed last summer, therefore, I only have to have a nurse come out once a week to insert the needle. I went through numerous beta blockers and also didn't tolerate the standard POTS' meds. I am now on Ivanbradine that I order through a Canadian Medstore with an rx from my doctor. If I take Ritalin, I have to take a teeny amount or my heart rate goes crazy. I would definitely ask about PT, hydration options and Ivanbradine. Also, I have dealt with debilitating migraines. Have she ever tried the monthly prescription shot Amiovig? It has changed my life. Cut my migraine days by 95%. I hope some of this helps. 

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? 

8 hours ago, cmep37 said:

I was pretty much bedbound like your wife for about 2 years - I didn't know I had POTS at this time ( I'd been having symptoms since I was a teenager but I didn't even know POTS existed and my symptoms were dismissed by doctors as anxiety or depression or just pure laziness!)  Any day I felt a little better I would try to do too much (and at times too much could be as little as having dinner out of bed) and then I would spend days or weeks or months recovering before doing exactly the same thing!  What helped me get out of it? Recognising this boom and bust cycle and forcing myself to do the same thing every day, regardless of how good or bad I felt.  Doing small amounts of exercise multiple times a day to recondition my muscles.  Modafinil (Provigil) gave me a bit more energy to allow me to start this exercise programme although I stopped taking it after a few years as the benefit had worn off.

I did all this before finally getting a POTS diagnosis about 4 years ago swiftly followed by a hEDS diagnosis and a lot of my symptoms now make more sense to me.  I'm still pretty much housebound as I did not respond well to any meds and unfortunately the UK does not support the use of IV fluids for POTS except in emergency situations.   I use waist high compression, vast amounts of fluid and salt and try to do as much exercise as I can tolerate but I still get flares when I'll be stuck in bed for a bit again.  My GP tells me it's a marathon, not a sprint - tell your wife not to give up hope!  And please be kind to yourself - it can be very difficult caring for someone in your wife's situation so make sure not to neglect your own physical and mental health!

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. 

7 hours ago, Pistol said:

I use low dose Methylphenidate ( Ritalin )

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. 

6 hours ago, Delta said:

You mentioned your wife had not tried a beta blocker

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?

36 minutes ago, PotsieCrocheter said:

I have a few more questions. Can your wife get to the washroom/bathe on her own? Can she change positions in bed on her own? Is she able to get out to the hospital/doctor’s?

I became almost completely bedridden, except for those things. I would always have to lie down at doctor’s appointments/ER and recline in my husband’s car.  I also used the word bedridden, but found it confuses the medical experts because I had no bed sores, etc.

 

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 :(. 

6 hours ago, KiminOrlando said:

Need more info. What tests has she had? Where has she been seen? What happened when she had those meds? Is her norepinephrine high or low or normal? What did her tilt table test say? NeuroCardiogenic Sycope? Does she actually lose consciousness if she were to keep standing? Did they try a beta blocker? Was she not a good candidate for that? Does she have any other issues like autoimmune, Parkinson's, MS?

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!

14 hours ago, Pistol said:

Hello @WBuffett - I am so sorry that you and your wife have to endure this!!! To answer your question: yes, I have been in that position, however for me it is only during a flare. I get so bad that if I stand up my BP either drops and I feel faint ( or actually faint ) or my BP skyrockets and I have autonomic seizures ( no circulation to the brain from blood vessels constricting ). At those times I have to crawl to the bathroom to prevent passing out. 

For me ( and many others, for that matter ) the ONLY thing that stops me from going to where your wife is now are IV fluids. In the past my autonomic specialist ordered IV fluids weekly for a month and it stopped the symptoms completely. Then my PCP would hospitalize me overnight for fluids whenever I got a flare and I would go in very sick, unable to walk etc - and the next morning I would leave skipping and hopping!!! Today I have a port and get IV fluids up to 3 times a week at home and am much improved ( compared to back then, of course still live within the limitations of POTS ). Here is an article that explains that IV fluids are a proven treatment for severe cases of medication refractory POTS, maybe you want to show this to your wife's doctor and explain that it is used by the leading physicians in the autonomic field:    https://pubmed.ncbi.nlm.nih.gov/28185102/

It is no surprise that your wife is now bedridden - however she has to be terribly deconditioned by now, and that makes POTS much, much worse.  When we spend all our time supine in bed the act of getting up and adjusting to being upright takes much, much longer, so the symptoms of presyncope and syncope become worse every time we stand up. Orthostasis ( the ANS responding to being upright ) is a very complex process and is disturbed in POTS patients. I am not sure if you live in the US but since your wife is homebound she qualifies for home therapy ( for most insurances ). What is very effective in deconditioned POTS patients is physical therapy, I have received it when I was at my worst. They come to your home, assess her abilities and then work on slowly strengthening her body to relearn how to first sit up and then stand up. They teach exercises lying down first, to strengthen her muscles, and then ( when she regained some of her strength ) graduate to other exercises. all this is done to her tolerance, so no need to be afraid. 

Once she has regained some of her strength and lost some of the fatigue the doctors can start working on her medications again. In her current state most meds are probably too strong, and cant help due to her deconditioning. Medications cannot make her get up and move - her body has to relearn that. If her physicians are flabbergasted they hopefully will be open to these proven treatments. Feel free to share this response and the above link with her doctor - this regimen of IV fluids and PT has helped many POTS patients, and it definitely has improved my POTS when it was at its worst. I too could not tolerate most commonly used POTS medications, so taking a more aggressive approach with IV fluids was totally appropriate. I strongly believe that these measures will help your wife - please ask her physician to consider them. 

Don't lose hope  - the only thing that will keep her in this condition is not doing anything. Feel free to PM me anytime you have further questions or need help. Best wishes!!!!!

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?