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Everything posted by CallieAndToby22

  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.
  15. His advice was to drink all day long and he knew I have severe Interstitial Cystitis.
  16. Thanks Pistol. I won't be seeing this cardiologist again. He wouldn't even talk about iv infusions. His entire advice was to drink all day even though I'm tortured by IC and needs lots of rest and sleep because of ME/CFS. The only thing i can do is try to see the one specialist in town; my mom is a nurse so maybe she can drop by in the hospital one day. I used to see Dr. Charles Thompson in Pensacola but he became too sick himself with hyper pots and retired, he was the most helpful and kind, understanding all my conditions. Only thing I'm on Dr. Thompson put me on is beta blocker and that does help.
  17. So for the past 4 months my blood pressure has really dropped and HR still high. I've never had an issue with blood pressure until now. Then for a week I had palpitations every few minutes, I'm supposed to wear a heart monitor...... Anyhow I saw a cardiologist and the only advice he had was drink all day long and I said, "Excuse me sir, I have extreme interstitial cystitis and most days I use the bathroom for 5 hours", and it's like it went in one ear and out the other and he said it didn't matter I needed to drink all day. There is only one specialist in my city and he's not accepting new patients. I also can't drink gatorade as it flares my bladder from citric acid. My mom asked for florinef and he said okay, but I'm always frightened of new meds b/c I get terrible side effects. How do y'all do on florinef? BTW, palpitations NEVER addressed. He also had no clue what ME/CFS was and was telling me to take walks and lose more weight KNOWING I've lost 50 lbs on my own changing my diet; I haven't taken a walk since 2008, it's very harmful to exercise with this disease. I wish we weren't so misunderstood. Anyone else have IC? Mine is extreme.
  18. I took nortriptyline. Forget the dose b/c it was so long ago. Made me starving all the time too. The worst offender was zyprexa, but I've lost 50 lbs now since getting off this crap.
  19. Tricyclic antidepressants cause a lot of weight gain, I know from experience. I'll be seeing new cardiologist soon and will ask these questions. I have IBS didn't know it was related to POTS.
  20. I take the beta blocker bystolic. That took my heart rate down.
  21. It's weird but the on drug that helps ALL ME/cfs patients is the benzos. And we all have dysautonomia too. So it's interesting they help dysautonomia. I used to take xanax I take 3mg of klonopin a day now.
  22. Every medication has risks. I was put on zyprexa for sleep and had to keep increasing dose (it's an atypical anti psychotic) and my doctor said "you could afford to gain a little weight). Well it turned into gaining A LOT of weight 10 years later. And I was then told "you could get diabetes", so then 3 months of withdrawal HECK and since last year I've lost 40lbs so I'm proud of myself. I am at no risk now! I had to see a new doctor b/c the old one didn't know how to get me off of it, they don't tell you about the withdrawal. Anyhow, haven't had many side effects with klonopin.
  23. One of my friends can't sleep but she won't increase her klonopin dose, I'm like girl come on, increase that stuff by 1mg and get some sleep. She scared of the dependence, but really I haven't seen this as a problem in the chronic illness community. Yea you're on a small dose, so don't overthink it!
  24. For anyone in Florida, I am seeing Dr. Niraj Pandit. Or Tallahassee. I will let y'all know how it goes. There is another cardio in Tally that knows a lot about dysautonomia but he is not accepting patients right now (Dr. Khairallah). https://health.usnews.com/doctors/niraj-pandit-202549
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