Help!

[gdomaracki]

So for the past two years I was doing so good. And then a few months ago I started this downward spiral & everything is out of control. I've spent the past three weeks going to the er and to every specialist. Labs come back okay so far. But I get sicker every day. Everything I eat makes my blood sugar drop. Unless its a snack like ww crackers and cheese. I'm getting stomache pain and diarrhea off and on, common after I eat. My blood pressure and heart rate are elivated, and im getting tachy and palps alot. I've started this flushing thing where my face gets red, my ears burn and get bright red. I feel like I could jump out my skin. I've had a few rashes and hives, and a few pots storms where i get super high bp and hr and have trouble breathing. I saw a new dr yesterday and she thinks its my histamines and wants me to try Allegra. Of course I'm scared to take anything since my body is so crazy right now. Can anyone relate? Anything help you when you're like this. Im trying not to work myself up, but im so scared right now. :-(

[khaarina]

I'm taking Claritin and it helps some with the skin stuff. I still get flushing a lot, and minor rashes sometimes, but it helps. I also had a lot of sinus problems and it practically eliminated that. It is hard to say that it has helped with the heart rate and blood pressure spikes because my symptoms change so much from day to day (and hour to hour!). I cut it in half and take half in the morning and half in the evening. If I forget to take it I start to sneeze within a few hours. A built in timer, I guess lol. If your docs says go for it, I would give it a try. I haven't heard of antihistamines negatively affecting people with POTS. It is frustrating to have to keep taking new pills and treating symptoms without truly knowing why they occur, but it is a huge relief to see some of those symptoms go away.

[khaarina]

P.S. I am also taking 25mg Benadryl before bed. It is the only thing that helps me sleep. I suspect it has something to do with it being and antihistamine in addition to being a sedative.

[Chaos]

There are those of us with POTS who also seem to have a mast cell activation component. You seem to be having many of the same types of symptoms I was having a few years ago. My POTS neuro started me on a mast cell cocktail using several different meds to attack the issue and it's helped quite a bit.

I know in ME/CFS patients it's been found that their immune systems are much more predominantly Th2 driven than Th1. That tends to be the part of the immune system that deals with IgE mediated allergies and mast cell issues in part. Since there is so much overlap between ME/CFS patients and dysautonomia/POTS patients, this may be a similar situation in our case although I don't know that much immune research has been done related to POTS yet. If it is the case, then this might explain why so many of us seem to have this MCAS issue.

One thing that many of us have found is that it takes several different meds to deal with the issue so Claritin may help but you may also want to ask your doctor about adding an H2 blocker as well. My doc has me on Claritin, Singulair, Gastrocrom, Aspirin and Pepcid to address various aspects of the problem. I also sometimes need to add in another H1 blocker like Zyrtec or Allegra on top of the claritin during my regular allergy seasons.