CallieAndToby

5 hours ago, KiminOrlando said:

Florida won't give opiods for ANYTHING. I woke up from surgery with throbbing pain where they had just cut me and they gave me 2 regular tylenol in the recovery room. I'm not kidding. I will NEVER do that again. I will need narcotics or at least long acting numbing if they are going to cut me again. Florida is the WORST.

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? 

On 12/18/2020 at 5:57 PM, Rexie said:

For IC there is now prescription Elmiron my urologist was excited about. My insurance covered it and CVS had it but not knowing what it would do to me (how it works to heal the bladder wall) I got it but haven't tried it. My guy retired and I haven't been back to query the replacement. I have autoantibodies (ANA and to striated muscles) and am so drug sensitive new stuff is sometimes scary. The Prelief, diet, and CystoProtek seem enough for a pain-free bladder for me. Lots of new stuff coming down the pike for all kinds of things - sweet! 

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. 

On 12/11/2020 at 9:02 PM, Rexie said:

Seek long enough and you can have some truly Kafkaesque experiences...

Be of good courage! 

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.

8 hours ago, KiminOrlando said:

I think they reject us when they don't know how to help us. The secretary that told you that likely didn't have the authority or the knowledge base to make that declaration. She probably just said something to get you off the phone. Some doctors even look for a specific kind of dysautonomia or they won't treat you. Some won't treat you if there are other medical issues complicating dysautonomia. You were likely given an excuse, not a medical diagnosis. This is part of the process of weeding out the wrong doctors. This one may be good, but not the right one for you. Keep looking. You will find the one interested in your case.

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." 

On 12/8/2020 at 9:24 AM, JimL said:

Could be they don't want you as a patient. IDK. There are good doctors out there, but there are times I feel like if I put on a white lab coat, got a script pad and used WebMD, I'd be better than some of the one's I've been to, and I am kind of serious. 

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. 

16 hours ago, HCD77 said:

I wonder if it was my dysautonomia dr in Texas. He wouldn’t diagnose me with POTS because my tilt was off by 3 bpm. My heart rate only went up 27 bpm instead of 30 !! PM me I would like to know if it was the same dr. I’m so sorry this happened to you. I think with all the new Covid 19 longhaulers with POTS these specialist  are going to be overwhelmed. 

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. 

On 10/25/2020 at 6:45 PM, beastwiththeleast said:

Hey there;

Under a tentative chronic fatigue diagnosis and after almost 3 years of being told I'm looking for attention, my doctors have put me on two antidepressants, both with drowsiness/tiredness/fatigue as a side effect (amitriptyline (endep) and agomelatine (valdoxan)). This seems strange to me, since the issue I talk about the most is that I'm always tired and feel horrendous (because I'm always tired). 

I understand that the illnesses discussed here often present with fatigue and wanted to ask the same: Does anyone else have experience with this? Am I nuts for thinking that this is weird? I've been on these for months and only feel worse (which is normal for me). Are people with CFS/ME/POTS usually put on medication other than antidepressants?

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. 

On 11/13/2020 at 12:00 PM, Sushi said:

I guess you’ve checked with Dr. Randy Thompson to see if he is taking appointments?

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. 

On 11/13/2020 at 11:38 AM, POTSius said:

@CallieAndToby22

Sometimes you can call and ask them to put you on a "cancellation list."

They would call you if someone else suddenly cancelled and you could take their spot

I think people with dysautonomia cancel all the time due to their fluctuating health, so I think there is reason to hope!

That's a good idea. Thank you.