I am scheduled to have a botox injection next monday. I had to FIGHT for this and FIGHT against the gastric pacer. I just don’t know what to do . And it seems like my POTS symptoms have gotten worse lately. UGH I have 2 children under 6, and I have been dealing with this stuff for over 5 years now. Its just getting worse. I have tried the ZZ double dose for 2 weeks now and have not noticed a dramatic difference. Does that mean your treatment isn’t going to help me, Dr. Diana??? I don’t know what to do in the meantime to hold of the ocean with a broom. Where do I go next? I know you are working so hard to get us answers, but I just fear that I can’t hold off much longer living like this. I’m willing to try anything at this point. Where would I get a soft neck collar? I could give that a shot. I have had an adjustable bed for years. I can’t sleep flat anymore because when I do my heart rate is so bad! Sometimes, I even have to sleep in the recliner bc the bed’s angle just isn’t enough. I get over heated SO easily! I do notice when I lay flat on my back my symptoms are worse. I feel dizzy, feel like all the air is getting sucked out of me (if that makes sense) and just feel a weird pressure sensation. I was tested for a chiari (sp?)malformation a long time ago and it was negative. What meds do I need to be asking my primary doc to try??? What tests do
I need to have done to pinpoint this possible low lying pressure/mast cell? I feel like i’m missing pieces of the puzzle and i’m ALMOST THERE in terms of figuring this out.. this is ruining my life and my family’s life. And i’m sure, like everyone else on here, I just want my life back!! oh one last thing, I tried the “exercise” route for POTS and did that for a few months. I felt horrible!!!! They kept saying push through it and it will get better, but it never did. Now i can’t exercise at all. But the nausea/gastric problems are the main problems right now. Sorry for ranting, just need to know what to do next!! I guess the botox is a simple bandaid until I can get some answers. Definately NOT wanting the gastric pacer if I can avoid it!
Oh, How I hate to hear this… 🙁 Usually the ZZ drugs help with diarrhea, but then the constipation/gastroparesis sets in. Was that your experience. Most of us have vascular abnormalities that can mean we don’t drain blood well from our heads when we lie flat. Just as you’ve found, elevation of your head is important. My son and I have fibrosed valves at the base of our internal jugular veins. That is irreversible, so we elevate. HUGE HELP. The soft cervical collars are on the “store” through Amazon (on prettyill) or you can buy one at most drug stores. They really help, especially if you have to elevate your head.If you respond to antihistamines, you likely won’t exercise well without degranulating — that’s a real problem for us. Nausea was constant for me until I relieved my high intracranial pressure with Diamox. Did you try that, perchance? The nausea went away immediately. If gastroparesis is the cause of your nausea, I think I’ve figured that out. I’m working as fast as I can to get that to you, OK? I know it’s a race against the clock for so many. Big hug…