CallieAndToby

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.

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!

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.

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.

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.

His advice was to drink all day long and he knew I have severe Interstitial Cystitis.

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.

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.

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.

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.

I take the beta blocker bystolic. That took my heart rate down.

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.

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.

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!

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

I've taken it for like 15 years. I take 3mg a day. It's the most helpful thing for ME/CFS right now so all ME patients are on it. Incredibly helpful with post exertional malaise, headaches, and sleep. You're taking a really small dose so I wouldn't worry about it. My mom takes klonopin and buspar for anxiety and she's completely healthy she just gets stressed and uses klonopin as needed.

I'm also extra extra exhausted. I get plenty of sleep and naps and it's not restorative. Now part of that is having ME/cfs but it's just been worse lately with this bp drop. I informed my PCP that I wanted to see the local guy so just waiting.

Dr. Charles Thompson in Pensacola was so great. He had hyper POTS himself but he actually got too sick to continue practice. He was just so good. But we do need more like him. Yes it is sad the way ME/cfs has been treated. This scientist's son is extremely ill with the disease so he's working with a team with passion and urgency.

2 days ago Scientist Ron Davis found a biomarker to diagnose ME/cfs and have already started testing FDA meds on cells that have been stressed with saline. Anyhow, my PCP called with a local doctor recommendation. And out of like 40 reviews he has a 5 star review as a cardiologist but I didn't see anyhing about dysautonomia or pots. I'm too sick to travel far.

So my heart rate has always been high for which I take a beta blocker and my blood pressure has always been fine until now. For the past month my blood pressure is extremely low and my heart rate still high. Taking my beta blocker has been making me sick at night which never happened before. The local people aren't accepting new patients so my PCP said UF Shands of Mayo Jax but I have no idea where to go or who to see. I've had very bad experiences at both places having ME and IC. I know Mayo Jax has dysautnomia specialists but mayo is so so so so so conservative and tend to not think outside the box. Suggestions?

He has mixed reviews. I'll see him and tell you what I think.

Hey Kim. I'm sorry to hear this is happening to you too. But I do have good news I just forgot his name. My mom is an RN and today she had a patient who is a PA in medicine and has dysautonomia. He has a port and said the saline iv's help a lot. So my mom said WHAT DOCTOR DO YOU SEE? He gave her the name of a local guy and said he's really good, again I have forgotten his name. The lady I was seeing here kept telling me to drink gatorade and wear hose but I have terrible bladder problems, I can't drink that stuff. I will come back when I have a name I'm in tallahassee, or I can see the guy first and let you know how goes.

I used to see Dr. Randy Thompson because I only live 3 hours away from Pensacola. AS many of you know, he was sick himself and got too sick to continue practicing. He helped me so much but I haven't been able to find anybody in my city since he retired. I saw a woman and she was against saline iv's and medication. I saw another local cardio and he said "I treat it naturally. Hydration and exercise. I know it's hard but you can exercise." I have chronic fatigue syndrome, no I can't, it makes me drastically sicker. So I'm not sure where to go from here. I live in Tallahassee, FL. I thought things were under control but in these past 3 weeks I've passed out twice.

Well I used to just take xanax and it only gave me like an hour of sleep. Don't let them put you on an anti psychotic that causes weight gain, zyprexa helped me but caused like 100 lbs weight gain most of which I have lost now. I take klonopin, and I take melatonin, and I take a high dose of trazadone. Trazadone doesn't really have many side effects and it's one of the few drugs that gives people stage 4 sleep. Basically I take a bunch of pills but those are the most helpful. Oh and I take bystolic which helped tremendously with my heart rate, it's a beta blocker. In my sleep study I have tachycardia IN MY SLEEP. So this awesome pots doctors put me on bystolic and that fixed the problem.

I'll tell you exactly what I did. I gathered up my most important medical records and there was an address I sent them to. One of my records was a letter describing all my diagnoses etc. Well the judge read all these records and sent me back a letter that said "As long as you live in Leon County, you will not be called for jury duty." It was pretty amazing but maybe you'll have a judge that has some compassion.