Arez2row

Have you ever tried mixing the gatorade/powerade with water? I find it helpful with bad headaches/post-IVIG infusion migraines. I like it because you can add half the amount of powder to the recommended amount of water. At least then you still get the benefits of the electrolytes, sugar, vitamins etc. but in a lesser amounts, and I haven't gotten any side effects from it.. My body tends to be very finicky when it comes to food/drinks, etc. Just thought I would share a suggestion! Best wishes!

I get these as well! I get what looks like a blotchy rash, or a raised rash with fine bumps all over my face, neck and chest. I don't know what triggers the rashes.. I am going to be seeing an Immunologist/Allergist who specializes in mast cell disorders. The only thing that I have tried is benadryl, but it makes me dopey.

Hi! I had a very similar situation to you- I have experienced/still experience the loss of bladder function and have been diagnosed with a neurogenic bladder (about a year ago). I have some form of AAG, and currently undergo IVIG treatments. If you want to talk more, feel free to message me. Best of luck with everything and my thoughts are with you!!

Hi! Just over a year ago I was diagnosed with POTS (and later other conditions that caused this). Originally, I managed my symptoms pretty well with compression stockings, a high salt diet, and propranolol (which is a beta blocker). This stopped being effective for me after a while, so I switched to 0.1mg of Florinif once a day and 2.5mg of midodrine three times a day. Recently, with an increase and activity and warmer weather I was really symptomatic (dizziness, blacking out, etc.) so we increased the meds. I now still take the Florinif, and take 5mg of midodrine four times a day. I'm trying this for a bit and will either increase the dosage or switch to something else. About the beta blocker- I stopped mine for the reason you said- my BP was going way too low and making things worse. It helped at first with the tachycardia, but the other side effects weren't worth it. But everyone is different!! Maybe talk to your doctor about increasing the frequency of the midodrine? I went to 4x and so far it is helping! When I feel myself "flaring" with POTS symptoms I try to get extra rest, drink TONS, and exercise lightly if I can (walking, slow biking, etc.) to make sure my legs don't get too weak and to keep the blood moving. It doesn't take away the symptoms, obviously, but I feel a bit better doing so. I hope you feel better ASAP. I know how frustrating everything can be- if you have any questions or ever want to talk I'm around!

I am experiencing/ working to get over a flare as well. I'm in the same area as you (if that has any relevance, haha). Were you able to get any relief?

If you don't mind me asking, what symptoms/conditions do you experience? And what treatments/medications do you use? Why I ask is I am currently trailing treatments, and adjusting/adding meds and am curious as to what has worked for other people. It's hard because this is so rare! Feel free to message me at any time- I'm always around to talk!

I'm not sure of the name off of the top of my head. Do you have a similar condition as well?

Hi! I can really relate to your situation. I have AAG, from which I have POTs, gastroparesis, colonic inertia (the list goes on haha). I take meds for BP/HR, digestion, dysmotility, etc. I have done the sitz marker test with similar results. I have also fairly recently started IVIG with hopes of it working/slowing progression before further measures need to be taken for other issues (mainly the GI symptoms). I am new to this site- but if you want to I am more than willing to talk! I hope all goes well for you and best of luck!!

I was wondering if anyone on here has any experience with AAG. I am living with this condition and am interested to hear from other people in similar situations (what your daily life, treatments, experiences, etc).

I take 2.5mg 3x a day along with Florinif.. it is usually helpful, but sometimes it is it isn't enough. During flares, or days when I am over tired I still pass out.