CallieAndToby

You don't have to tell me twice. And that is horrible!!!! Tylenol for surgery???????? I have Ic/painful bladder syndrome and it's considered the 3rd most painful disease on the planet and they won't do ANYTHING. Horrifying pain. How am I SUPPOSED TO SLEEP? I'm sorry you went through that. Welcome to the new America. Man in high school I had bladder pain, bone pain, all kinds of pain, they put me on Percocet, Vioxx, and cortisone shots. Now I took myself off of Percocet b/c it made me sleep through school but the Vioxx was great, until it got taken off the market for giving people heart attacks!!!!!!

In 30 years I have tried everything. After getting more testing done in Jacksonville, I could not even urinate (b/c I was irritated from all the catheters) until they gave me a muscle relaxant. All I have for pain is a heating pad. I too have done medical research my entire life since this started at age 6. I took rapaflo for only 2 weeks but I could actually go to the bathroom and feel empty, it was miraculous, otherwise checking with ultrasound I was not fully emptying. They won't give me anything for pain........ it's odd b/c in high school they were throwing narcs at me left and right.

I know it lowers blood pressure. But it is literally the ONLY thing that has helped my bladder and I've been in misery since six years of age. It relaxes specific bladder muscles and the urethra. It also takes away my ptsd nightmares. A lot of people use flomax. My hope is Northera will increase my my blood pressure enough that I can take rapaflo. Nothing else in 30 years has helped, nothing except generic muscle relaxant kind of helps. When injecting botox they just inject where in the bladder and it has not been successful.

Tired. I'm going to try a new med. Vanderbilt told me to stop calling, I've just been calling 2x's a month now they're saying 10 months.

So I received my Northera!!!!! yay b/c my blood pressure stays so low. Anyone have experience? What to expect?

Elmiron is under lawsuit for causing vision problems and blindness. It's one of the first things I tried when I was a kid and after years, did not help. The thing helping the most is a muscle relaxant, I'm quite confident that my bladder muscles are very very tight and that's why I can't empty; hence the rapaflo being the main thing to help me.

Thanks y'all.

So even as sick as I am, I stepped into the producer role on Christmas, with some naps in between. I recorded everyone, including myself, playing silent night. Then I mixed everything and send it out as an mp3. On Christmas morning I woke up early and made a video of us playing (multi screen); this took about 2 hours. I'd love if you'd watch "Silent Night" and even share it if you'd like. Thanks! So glad I can still play. So my mother: piano, alto harmonies. Me: rhythm guitar, lead vocals. Brother makes an appearance half way through: guitar solo.

The only medication that helps my bladder is rapaflo which is a mild alpha blocker. But I can't take it b/c it lowers my blood pressure and mine is low low. You could look into the flomax or rapaflo b/c they aren't as powerful as the others. Will help bladder!

Psychiatrists are very quick to diagnose children with adhd. The last psychiatrist I was seeing was charging $250.00 for 30 minutes and I finally realized he was piling tons of meds onto me. Anyhow I read his reviews and they were all from mothers who were angry he put their children on stimulants. I'm not saying it doesn't exist, nobody attack me...... But dysautonomia is infamous for giving a sense of "anxiety" b/c the. body is overproducing adrenaline and sometimes I have adrenaline rushes for months straight. Dysautonomia also causes serious brain fog and mental fatigue and this makes it very difficult for me to concentrate, personally. Clonidine dropped my blood pressure and made me very sick and insomnia as well. Well brutrin can be stimulating for some people but why would that help adhd? If you see a cardiologist I would definitely talk about her new symptoms and the medications she was put on, if adhd is a possibility and who he/she would recommend to see......... I'm very tired I'm sorry I'm just trying to offer my best advice. All I have is a beta blocker and very very low blood pressure.

So 2 nights ago I had another seizure. I can feel when they are coming on now so I can call someone. Usually my mom who has been an RN for 30 years is home, so she witnesses them, but this time my brother and the 911 team witnessed it. I take klonopin and that doesn't help at all, so it's definitely not epileptic. They are very scary b/c apparently they have to assist me in breathing, I remember gasping for air. I only went to the ER to get my platelets checked since my oncologist dropped me last week in front of my mother over telemedicine. They were high, too high, but I can't explain any of this to an ER doctor; he told me it was going over his head. My neurologist simply says they are "autonomic seizures". The ER says I'm fine sends me home, but I'm worried b/c this keeps happening more and more frequently. As you know, an autonomic specialist recently denied my referral and my oncologist told me to see a psychiatrist and a urologist from NYU told me my thoughts on what meds had helped were "placebo". I only have a PCP. I was put on Jakafi for the MPN Essential Thrombocythemia, jak2 positive, and it destroyed my immune system by depleting my white blood cells. Since getting off of it, my dysautonomia is WAY WAY WORSE and my bladder, basically I'm having trouble urinating at all so always in pain. My oncologist found out about this and just weaseled his way out of the situation since he screwed up. My spleen is even too large...... All I have is a potential telemedicine appt with my PCP to go over "options". I think the only thing I'd be willing to do is the NIH undiagnosed disease program b/c I do believe these 3 diseases are connected somehow, it seems like it'd be really hard for the body to very think blood to places it needs to go. Has anyone been a part of this program? I'm really not sure, my body only wants to sleep.

Um, I don't know how to say this, but I've been seeing doctors for 30 years, all over, since I was little and I'm only 35. I've been treated like dirt most of the time b/c I'm a young female. I've taken a lot of psych meds only for my psychiatrist of 10 years to conclude it wasn't psychiatric which I'd been telling them the entire time. I've been poked and prodded like a lab rat for 30 years. I've been to Mayo Clinic 4 times. And they did nothing. Got labeled with IC in my early 20's, recently saw a urologist and he said I was emptying all the way, although I did not feel empty at all yet full, and thus my claims that rapaflo is the only medication that helped are "placebo"; my bladder is a nightmare, painful bladder syndrome is the 3rd most painful disease on the planet and they do nothing. Then I got diagnosed with dysautonomia based off of 2 tilt table tests, but they never really knew what type of autonomic dysfunction I have, then this guy in Texas tells me I don't have it and denies my referral. Then this year I was diagnosed with chronic blood cancer which I've probably had since age 17 (extreme itching, bone pain, raised platelets, and fatigue)......... I've seen many oncologists now and they've all been rude and nasty. My oncologist in Florida, just dropped me as a patient on a telemedicine appt where my mother and I were present. AT this point I have chosen not to see any more doctors as they find out it's a complex case, somehow it's all connected, and when they can't help me they just tell me I need to see a psychiatrist. That's the smallest summary I can give you of my medical journey.

Thanks for responses.

Thanks. Yea, I think doctors should be honest. The urologist I saw told me the medication that helped was placebo. My oncologist today denied that MPN's cause fatigue and it's the number 1 symptom. I wish they would just say "I don't know."

They didn't want me as a patient. But be honest and don't have the secretary (rude one at that) tell me I don't even have dysautonomia. One look at my tilt table test and it's quite obvious.

I just talked to my cancer doctor. Even he at Shands is very confused about my case. There is a lot going on and he thinks there is something genetic holding it all together. He straight up said, "whatever syndrome you have is not yet written in the text books". And he told me doctors just know what is written in the text books and they can't cross different pages and put things together. I think this Dr. did not want to deal with my case, but having the secretary tell me that I don't have autonomic dysfunction was extremely rude and UNTRUE.

Thanks.

So I was referred by my cardiologist to a dysauonomic doctor in Texas. They called me up and said after reviewing my records and told me I don't have dysautonomia. I was quite offended. I've had tilt table tests and been diagnosed by 2 autonomic specialists and my neurologist. Also, I'm very very sick, my blood pressure is way too low and after 5 minutes of standing I get very ill. I have huge adrenaline drops that won't stop for months. HR upon standing is 140. I have no idea what these people are talking about. And Vanderbilt hasn't even reviewed my records, it's been 4 months. I need help now. I'm having autonomic seizures......... etc. Not sure what to do. I don't know why this office told me that!?

So I took jakafi and it annihilated my immune system. I was taken off of it b/c my white blood cells were too low. Ever since taking this MPN cancer drug, my dysautonomia and bladder are HORRIFIC. What do we know about the immune system and dysautonomia? What am I supposed to do? IVIG did cure my dysautonomia in the past but I only got it for 6 months.

Now they're saying 6 months for Vanderbilt. I can't do it. I'm basically bed bound. For some reason I have absolutely no mental energy and I can't stay awake or do anything involving my brain.

And yes I was mis diagnosed. I actually have a very rare form of chronic blood cancer that only 200,000 people in the US have. I think ME is over diagnosed and there isn't enough investigation into what could really be going on. I have Essential Thrombocythemia jak2 positive.

They've been drugging me with antidepressants and antipsychotics since I started complaining about my symptoms at age 17. ME is not treated with those meds. And on the contrary, as someone mis-diagnosed with ME, I think the majority of us are dealing with very severe and symptomatic forms of dysautonomia. Amitryiptyline can be used for Interstitial Cystitis and pain but causes terrible weight gain and it a downer for sure sedating. I don't know what valdoxin is. My cancer doctor told me I was on so many psych meds that it was like wearing 50 blankets so I weaned myself off most including the difficult Seroquel. ME is some weird form of the Bodies' cells not being able to produce energy. There is some sort of treatment they do for that at the Univ. of Miami but I can't remember. I think the goal overall is to reduce pro inflammatory cytokines, check for infections and treat as needed, immunovir is often used to help the immune system, Low dose naltrexone is one used a lot for regulating cytokines and giving energy if you don't get the insomnia. Here's an article about Dr. Klimas, she's one of the researchers I've seen and respect. https://www.prohealth.com/library/university-of-miami-me-cfs-researcher-nancy-klimas-md-explains-complexity-of-chronic-fatigue-syndrome-in-terms-that-anybody-can-understand-24397 Oh boy I'm getting tired.

I have not. But I've been misdiagnosed with POTS and hyper POTS so I am quite worried as to what is going on. I just read your link, no I don't have that, my blood pressure actually drops very very low and I get dizzy and sick and faint or have seizures.

I contacted Dr. Rowe and he didn't really know other than to suggest Shands and Mayo.

Dr. Thompson is officially retired. He's trained some new guy who is a family medicine doctor. If you want to know more about Dr. Brannon, pm me. That's a good idea. Thank you.