Snri And Hyper Pots - Working For Me

[kayjay]

Hello all, I have hyperadergenic pots ( I know I spelled it wrong ). I have it to the point that I was misdiagnosed with Pheochromacytoma at Johns Hopkins based 3 or 4 positive 24 hour urine. Mayo also confirmed that I had Hyper pots based on my plasma tests.

I was on lexapro and Lyrica. Also tired all of the time. I wanted to try Cymbalta but I was afraid b/c some docs think you should not take this with hyper POTS.

Anyway I slowly made the switch and had mild high PB for about 2 weeks. I was worried and thought about stopping. My Doc suggested that I give it a while longer and I am glad I did. It has helped me so much. My BP has come back down and I have way more energy. I could not stop sleeping before.

I am not "cured" and don't think I'll ever be able to play tennis.... but I have been able to work out... have not been napping.... have less pain ( cymbalta helps Fribromyalgia too). Maybe this spring I can play golf!

I thought I would post about the meds I am taking b/c they are a huge help. I have not had a panic surge in weeks.

I take cymbalta, nadolol, and klonopin at bed time. Hope this helps someone else.

I have learned that when I switch meds I have to get over my FEAR (bad past reactions) and give them more time to work then a "nomal" person. I even flew last week to FL to see my mom. NO PROBLEMS.

[lieze]

Wow I think I have this too cause they wanted to scan me for a pheo.

I am so afraid of meds too but am so tempted to try the Paxil because I'm questioning if some of my symptoms I"m getting now aren't more anxiety related. I think I may even be having panic attacks.

Thanks so much for sharing your story and I'm glad you are feeling better.

lieze

[iheartcats]

I've been considering an SSRI, too. I just don't know yet. But it's exciting to see yours are working. I just have a gut feeling (I know, I know...not rational)...but there's something telling me they just might help.

Does anyone know is there's a generic medicine similar to Cymbalta?

[lieze]

My doctor says it just so happens that this is what she did her thesis on, but she said with all the research she did she cannot find how they help-they just seem to.

Now I did wonder about the snri since our norephinephrine is already sky high but I read that it does not reach the brain so maybe it's okay. I was interested in Effexor because it seems one of the side effects can be a higher bp and this would benefit me I think.

I am so ready to try this Paxil. It's right here in the drawer beside me and I am such a big chicken.

lieze

[TypewriterGirl]

I started Zoloft 2 weeks ago and my heart rate has been lower than it has been in 4 months (down about 30 BPM). I'm excited so far! I have med anxiety too and it sat there for a long time before I just went for it and started taking it.

[erikainorlando]

Boy, that is great. Cymbalta didn't work at all for me. My hr went crazy. Beta blockers and zoloft are the best bets for me so far. But I would clearly be afraid to fly...not quite sure why but I am afraid of all that movement and having to sit with my feet down for so long...so kuddos to you!

I will usually try any med ... just about ready to give my right arm to feel better!

[kayjay]

I should add that I really felt worse before I felt better. I do not do well with med changes and I was a chicken. Mayo clinic said it was ok and my mom really encouraged me to stick it out. I had a night where it felt like there was a bird in my chest and my bp was high for a few weeks. Now it is great though.

I wonder how many of us need to really give a chance for our bodies to adjust to the changes. I realized how much better I am doing when it was time to get a refill. Just for example it is 9:30. I used to be asleep by 8:00.

Everyone is different but I know in the past I would have quit before the drug had time to help me.... we have SERIOUS concerns about drug reactions.... for example my first and only ambulance ride!

I think I learned that with some meds I really am going top need a month to know if it is helping me.