What Meds Besides Florinef And Midodrine Have Helped You With Low Bp?

[Singout]

Hi, everyone,

I've got neurally mediated hypotension (but not POTS) and have tried florinef, which didn't do anything, and midodrine, which helped a bit.

However, since this started 1.5 years ago I'm still tired all the time, and can't sit/stand for more than an hour or so (with the stockings, abdominal compressor, lots of salt water...)

I've also got M.E. which compounds this.

Seeing my rather unsympathetic cardio tomorrow (I always leave these posts till too late!) and am wondering if there are other meds I can push him to try me on. Ones for people with high heart rate wouldn't be appropriate, though.

Thanks so much!

[SarahA33]

Hi Singout!

Here's a great article on Mestinon, It's older but I found it explained it really well, not sure if you familiar with this med or not?

http://www.ninds.nih.gov/news_and_events/news_articles/news_article_orthostatic_hypotension.htm

Good luck at your appointment tomorrow, hope all goes well, I hope that you and your doctor can come up with a plan that together!

[Katybug]

I have an inflammatory component to my illness. It might be caused by mcas but we're not sure if there may be something else at work also. At my lowest bp (65/42) I was also in an inflammatory flare. My immunologist put me on prednisone and it actually stabilized my bp. I now take 10 mg of prednisone at night and my bp hasn't been low since. It is certainly not a typical treatment for bp but it must be addressing the underlying cause of my bp becoming so low.

[Singout]

Thank you! I'll look into these. I should have said that my BP has been "normal" since I went on Florinef, but I've still had the symptoms, which is what is disabling. Can I have a BP that reads normal but still have this condition?

[AllAboutPeace]

Singout,

Yes, you can have this condition with a normal looking BP. My BP was great on my TTT until it suddenly plummeted. It's amazing (and frustrating ) how badly we can feel with good looking numbers!

I have pots/NCS with low BP and low resting HR. Fatigue/exercise intolerance has been a huge part of my illness, too. I did benefit from Florinef (although it only raised my BP very minimally). I didn't respond well to Midodrine - it dropped my already low HR lower which put me on the couch more. My EP prescribed one coffee for me in the morning and I did notice a benefit from that. I couldn't tolerate coffee for over a year when I first got sick.

Next my EP mentioned trying Paxil, but in my own research, I felt like it wouldn't be a good fit for me. Meds affect everyone differently, so you really don't know until you try, but my gut told me it wasn't the right one for me. When I researched Wellbutrin, it seemed like a better fit and the side effect profile was more appealing. I needed something to give me a little boost. My EP agreed to give it a try.

I wasn't expecting results right away (because people often say it takes weeks to notice a difference) but right from the very first pill, it raised both my HR and BP to normal levels and increased my energy. I charted it for me EP, so it wasn't just how it felt. As soon as it wore off, they dropped again. To me, it felt just like the effects from coffee. It gave me that steady boost of energy I needed (without making me jittery or hyper). I could see that it might be too much for someone who was more in the hyper stage, but for me, it actually made me feel more 'normal' energy wise, instead of totally sloth like . Eventually, I did have to cut out my morning coffee because i was already getting the 'coffee effect' from the med. I didn't need the med for the antidepressant effect, so I actually noticed no difference mood-wise or any other effects (except I think it did increase my metabolism),

I hope you are able to find something that helps .

*florinef is listed as having a contraindication with Wellbutrin on drugs.com. apparently both can lower the seizure threshold. I took both of them for over a year together and had no problems with that. I've just weaned off Florinef, with the intent of going med free for awhile, but I'm having a hard time getting rid of my energy booster. Lol.

[AllAboutPeace]

*just to clarify...when I said I'm having a hard time getting rid of my energy booster - I didn't mean it's a hard med to come off of. Just that I'm a little hesitant for fear that I will be a sloth again.

[Katybug]

During my first appt w/ my pots neuro, he told me that there was an old study that showed no direct correlation between the vitals and the severity of symptoms in diagnosed pots patients.

There are days when I feel terrible but my vitals look pretty normal. Other days I can feel I am tachycardic but I don't really feel bad other than shortness of breath if I move around or walk through the grocery store, etc.