Mostly bedridden with POTS

[Shellyh]

Hi,

Five years ago I was diagnosed with Neurocardiogenic Syncope after becoming ill and hospitalized. I was diagnosed via tilt table and given Ativan and Lexapro as i could not tolerate the beta blocker. After two years as I was able to come off the medicine and was relatively symptom free until a few months ago when I began getting very different, but similar symptoms. 

Rather than experiencing low blood pressure and near fainting, I now have high blood pressure and heart rate after standing or eating. The scariest of the symptoms are when my blood pressure spikes and my heart starts beating very erratically. 

I was put on Ativan at a very low dose. I tried Lexapro again but it worsened my blood pressure and caused even worse symptoms. I'm now taking Ativan and Toprol but I still cannot stand for long without feeling awful. I've noticed the pulse pressure is really close when I do. 

I am at a loss as to what to do. My doctor feels the SSRI will reset things but I cannot tolerate it. From reading others stories, I feel like mine is very severe. I am too scared to get off the Ativan but know I shouldn't be on it for long. 

Any suggestions. Does this really sound like POTS?

[MomtoGiuliana]

Welcome to the forum.  Your symptoms sound very similar to mine when I had severe POTS 15 years ago.  My heart would race and I would have very forceful beats and PVCs/PACs on standing and after eating.  I would also have episodes of high blood pressure.  I was also pretty much bedridden eventually and for months.

For me, a low dose SSRI did seem to help the most.  I was on it for several years.  After a very difficult adjustment period during which my symptoms actually got worse including severe episodes of anxiety-like symptoms, I improved greatly.  I still take a low dose beta blocker.

You say you cannot tolerate the SSRI -- what symptoms are occurring?  I would have given up on the SSRI early on but my doctor kept insisting to stick with it through adjustment.  He was right in my case.

SSRI's improve symptoms for about 50% of POTS patients according to studies I have seen.  Not to say it would be right for you. 

There are many other potential treatments available fortunately.

[MomtoGiuliana]

https://www.dinet.org/content/information-resources/pots/pots-what-helps-r100/

This link may be helpful.

[Clb75]

I was bedridden for several months when I first got sick. I’m now housebound but feel lucky that I’m at least out of bed and able to care for myself better than I was. I tried all of the usual meds and some others off label. I tried three beta blockers before I found one that works for me. I did try lexapro but it sent me to the ER with an adverse reaction. I know others really benefit from ssri’s though. I feel I made the greatest improvement when I started on florinef and started exercising on a recumbent bike. It was really slow at first but gradually I saw some changes. My worst symptom is dizziness when upright, I can’t stand for long because of it. I definitely get worse when I don’t exercise as much, and have more trouble standing. 

Unfortunately I think it’s a huge trial and error finding a combination that works. Keep talking to your doctor and hopefully you’ll find something that works. 

 

[Shellyh]

Hi,

Thank you for your reply. I have tried Lexapro three separate times in the last month and on day 2 of taking it, I couldn't stand due to severe headaches. When I checked my blood pressure it was very high, even while lying down but with a very low pulse. One reading was 185/110 with 44 pulse. The worst of it was when I would eat I would feel this awful sensation starting at my feet that went through my body and my heart would beat very fast and erratic. I also noticed an electric like current through my hands and heart. All three times I ended up calling 911 because I was so scared. By the time they arrived, it had calmed down. 

I really wanted it to work which is why I tried it 3 separate times, but after the last episode I called my doctor and she said to stay off of it. 

She thinks another SSRI may help but at this point I'm very hesitant to try. 

 

[Clb75]

When I took lexapro, my pupils dilated extra large, I had dizziness so bad I couldn’t walk without help and my BP spiked really high too. My doctor told me to stop it, and those symptoms went away after a few days. The doctor offered me another SSRI but I was afraid to take it too. 

Have you talked to your doctor about something that can lower your BP like clonidine? Is that what the Ativan is for, to keep your BP down? There may be something else besides Ativan to try. 

[Shellyh]

I too had enlarged pupils and extreme dizziness. The Ativan was prescribed to calm down the sympathetic nervous system and to assist in the transition to Lexapro. 

The Toprol helps a little in keeping down the blood pressure but I've noticed the pulse pressure can get very close when I stand which doesn't allow me to stay upright very long without severe headaches. 

I will ask my doctor about Clonidine. I hate medicine and have a lot of anxiety surrounding taking it but my symptoms are so frightening and disabling I don't have much of a choice. 

[Debbie Rose]

There are so many different SSRI's out there and they can be beneficial. I have been on welbutrin and am still on paxil (for my panic attacks) I've been on paxil 22 years-way before my diagnosis of NCS and does not change my symptoms. So ask for samples and very low dose so you can slowly go up. I hope you find one that will help.

[Pistol]

Hi - I am on Lexapro for years and - along with many other meds - it does help. My specialist has also recommended SNRI's for some patients since it works on Serotonin and Norepinephrine. I could not tolerate that one but many people do.