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About CallieAndToby22

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  1. Of course. I took bactrim for 2 weeks and it decreases my sleep meds and in and of itself causes horrible insomnia. So Walgreens was supposed to fill something to help with sleep and they haven't. It sucks. I had adrenaline 24/7 in 2008 and went the entire year without more than an hour a day of sleep.
  2. Also, I have a new neurologist who comes from Vanderbilt. He will send me there if need be b/c he says it's one of the best.
  3. Well I have autoimmune hyper POTS and the only thing that helped me was IVIG. I think you have to have certain auto antibodies come back positive though to get it approved, as it is very expensive.
  4. Well I have a really good neurologist now and he comes from Vanderbilt. But he wants me to see a local guy who isn't accepting patients who is really good, he said, "he owes me a favor" and IF that doesn't work out he'll send me to Vanderbilt. He thinks I have autoimmune POTS because the best thing to help me was IVIG but I was taking it for a different diagnoses, he'd like to see me on it again if the auto antibodies come back positive.
  5. So I used the salt sticks for a few weeks along with aloe vera pills. My bladder went downhill and I didn't know what was going on but I was going to the bathroom every 30 mins. It wasn't a UTI and I told my mother, it doesn't feel like a UTI it feels like my bladder is irritated. She looked at my new supplements and noticed the salt sticks have potassium which is horrible for IC. 3 days now stopping new supplements and I'm feeling much better.
  6. So here's a little detail on the newer alpha blockers: " Alpha blockers. These medications relax muscles in the urinary system to ease the flow and reduce sudden and frequent urges to empty your bladder. The dose of an alpha blocker is stepped up gradually as you remain watchful for side effects, such as nasal congestion or headache. "The ideal is to get to the most effective dose without bothersome side effects," Dr. Barry says. The older alpha blockers doxazosin (Cardura) and terazosin (Hytrin) can cause lightheadedness or fainting from a sudden drop in blood pressure. The newer alpha blockers—alfuzosin (Uroxatral), silodosin (Rapaflo), and tamsulosin (Flomax)—tend not to affect blood pressure." The ONLY thing to help my IC was rapaflo but it lowers my blood pressure. Is there any way to combat this? I can't keep going to the bathroom for 4-5 hours a day.
  7. I was diagnosed with autoimmune encephalitis and treated with ivig for 6 months. The only thing it helped was my POTS. It's very hard to get approved because it's so expensive but I wish I could try it again. Will be asking my new neurologist.
  8. I am not on birth control. Been alone for a long time b/c of all this crap. But I'm glad you made that discovery for yourself. I am also attached to a heating pad the problem is it has caused bad discoloration and wounds and burns and they tell me to stop using it but nothing else helps. Rapaflo helped a lot but side effects, drops blood pressure. I've figure out the things that help are things that relax the bladder. I believe I'm having spasms. But why didn't botox help? I have tried many installations and they burn my bladder now. Rapaflo relaxes the bladder neck and other parts of bladder.
  9. Yea they said since he started a new practice it wouldn't matter if I'd seen Dr. Thompson in the past. I'm being sent to Mayo in Jacksonville to see the doctor who heads up the POTS clinic. Please give any experiences on this! Yes I was diagnosed with mast cell, I tried every OTC med and then prescription medication and nothing seemed to make any difference at all. I'm really in a bad situation. Nobody will give me anything for pain except anti depressants that cause bad weight gain. My bladder is so bad it seems like my days are just going to the bathroom a BUNCH then resting. I saw a very competent IC doctor and he was really stumped because I've tried everything. I'm very overwhelmed. And I have ME/cfs, right now I'm running on no energy after resting a lot today. I can't do anything or get anything done. If I do something my energy drains very quickly. And on top of everything I'm lonely, I didn't expect to be single for so long; the only positive is that I'm seeing a good neurologist at the end of this month.
  10. Dr. Thompson isn't accepting patients. They said there's a 60 patient waiting list. He recommends UAB but I have no idea which physician. And someone here recommended Vanderbilt.
  11. Yessss. I need to see him. We had a special bond and he really cared and helped me a lot back then. I am 2 1/2 hours from Pensacola which isn't bad at all. Usually we stay for a few days so if one gets cancelled then he can see me the next. Thank you!
  12. I joined an IC group and nobody really understands. I talk about fatiguing disorders and POTS and they all seem to have JUST IC. I tell them I need to rest most of the day so I can't be getting up to the bathroom constantly but they don't understand. And obviously for POTS I need to drink. It's hard, most things irritate my bladder and cause flares, otherwise I would drink electrolyte drinks. Just looking for some understanding. I live with very debilitating fatigue, I have hyper POTS, neuro inflammation, extreme IC, and I have OCD that is latched onto the bladder issues though L-methyl folate has helped the ocd.
  13. Vanderbilt? I'm tired all the time b/c my blood pressure is low and HR high but today I've been drinking those salt tablets. Also, I am seeing a uro/gyn in about a month as well as a neurologist who called me personally and said he could help me. I have severe ME/CFS and a new theory that just came out says neuroinflammation (which I'm diagnosed with) in ME/cfs causes a hibernation state, then lists reasons for the inflammation.
  14. I've actually been all over the country about my IC and done everything except for surgery. They told me 2 weeks ago, there isn't anything we can do for you. I've been to Mayo and they did nothing, I've been to shands and they "don't treat IC". I've seen the top IC specialist in the country. This started when I was 6 years old so it's been a long journey. I even have the interstim device implanted for my bladder. I also have severe and debilitating fatigue because of ME/CFS so I really need to rest a lot and not be getting up to the bathroom, IC is already a huge problem in this regards. Thanks for the suggestions otherwise. I can order the Trioral. Unfortunately I used to see Dr. Charles Thompson and he retired b/c he got too sick with hyper pots. There is only one dysautonomic specialist in my city and he's not accepting new patients. I'm really too sick to travel any more I can only hope a spot opens up.
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