CallieAndToby

Well nobody Is helping me. Unfortunately the small things I can do myself aren't helping. All my doctors have dropped me except PCP b/c it's complex. It started after I took a cancer medication that suppressed my immune system so I'm worried about an infection that popped up that was dormant. There is nobody is my city that knows anything. The ER doctors could've helped months ago but they told me I was "stressed" over the pandemic, in reality it's the severe autonomic dysfunction. According to my tilt table in 2010 (long time ago), the doctor didn't know what it was, does not fit POTS or hyper POTS. 

I have terrible bladder issues. Started when I was 6 years old, have it in my records. I think it's more of a bladder outlet obstruction kind of thing b/c the only that has helped me is rapaflo (an alpha blockers that lowers blood pressure), so I can't even take it. 

Hi everyone, I've been gone b/c of multiple seizures a day and in and out of ER. Now I got a good ER doctor that at least knew what pots was and by accident we figured out that tourniquets to my arms and legs brought blood flow back to my brain, at which point I literally woke up, but otherwise I can't even sit up. I'm completely bed bound and scared to sleep b/c I keep waking up gasping for air and feeling like I'm passing out. Every doctor has dropped me except my PCP and he has referred me via STAT to UAB. There are other problems, I have the blood cancer and my platelets are rising. My testosterone levels just came back majorly majorly abnormally high which could be adrenal hyperplasia or pcos. It's all a mystery but I'm waiting to hear from UAB. I'm not sleeping b/c I'm frightened. Nobody is giving me saline iv's. I drink water with salt tablets but it's getting me up to the bathroom constantly at which point I'm fainting, I really need to stay supine in bed. And drinking a lot causes my bladder to flare which then in turns keeps me from resting and sleeping. When I lose blood flow to brain, I have slurred speech, dragging legs and barely able to walk (they even thought it could be MS). My PCP referred to UAB autonomic clinic yesterday, does anyone know the turn around? I won't be on here much as it takes a lot of effort to type things and read, but my caretaker will probably sign up and chat with you guys. I've tried sleeping with legs propped but I can't sleep, my head starts hurting very badly and I feel weird and unable to sleep. I only have a very caring psychologist (therapist) and my PCP!!!! 

I needed sleep and took a tiny piece of klonopin this afternoon after receiving a saline infusion. I slept for hours. But I woke up severely sedated and it was a tiny piece and I'm used to taking way more. It seems like I'm just getting more and more sedated. I don't understand what's going on, this started with the cancer medication Jakafi. Also, last night I collapsed on the tile floor and had another seizure. My dog was trying to help me, it was miraculous what he was doing but nobody is listening. 

Yes I'm bed bound too and all doctors except my PCP have dropped me. I posted about the immune system and autonomic dysfunction but I'm too sick to continue research. I want to throw my hands up in the air. 

On 1/8/2021 at 8:04 AM, Ashleigh said:

The dysautonomia/MVP center in Birmingham, AL might be an option for you if you’re in north Florida. I don’t know what their current wait time is for an appointment, but I’ve had wonderful care there. 

Thanks!!! That's closer than anywhere else. 

Guys we shouldn't blame ourselves for an eating disorder and we shouldn't blame ourselves for our health issues. I thought the Eating disorders I battled for 8 years was my fault and destroyed my health but it's not true. Looking back I showed signs of IC and dysautonomia at age 6. Maybe it's the other way around, health problems causing eating disorder. For me, in high school I started experiencing weird symptoms, bone pain, chronic itching, fatigue and falling asleep in class; then at 18 I woke up with tons of health stuff and eating disorder thoughts that came out of nowhere! I literally never had them before so I do think they're connected but I think something may be happening to the basal ganglia region of our brains that is out of our control. I am recovered from nearly a decade of anorexia and bulimia nervosa. I will not blame myself. I fought like heck to get better. I know the fight but I will not blame myself. Turns out I have rare chronic blood cancer, no way did an eating disorder cause that! No self blame. I just let it go. For me though I feel better not eating, when I eat I nearly fall asleep because my mom is a nurse and she said there are blood vessels in the stomach that have to work harder for us to digest food and it lowers our blood pressure and does things with blood circulation......etc. So to get through college I would fast. I only finished 2 years. 

First off, sorry to hear this. My bf said he had this and it ended up being an infection. 

I have terrible bladder pain associated with the dysautonomia. 

Yea I can't cook either. So sick and bad UTI. I'm relying on my mom, granola bars, bananas, and those Amy's meals you heat up. Sorry I don't have better suggestions. 

6 hours ago, KiminOrlando said:

That last link is a very good article. Thanks for posting this.

No problem. That last article is super excellent; it evens talks about treatment for bladder problems associated with dysautonomia, even etc stuff. 

4 hours ago, Nin said:

This have been happening to me all week. I go to bed reading on my phone (calm) and then my heart has been pounding, also blood pressure going up. I've had some scary episodes this week. Im come to the realisation the toothpaste is causing it. I'm brushing my teeth, then instantly they start tingling, about 45 mins after heart starts pounding, body heats up, feeling sick and feels like a seizure is coming. The next day I'm just good for nothing. I wake up in the middle making these weird breathing sounds and my heart just pounding. 

I have terrible bladder problems and I get a lot of UTI's and the dang thing wakes me up throughout the night. It's terrible. I'm sorry. I get it. 

I have to take a small dose of Bystolic at night. It keeps my heart rate down. It's a beta blocker. I'm sorry it's that high, that's crazy. 

This is what I've been posting on Facebook and getting ridiculous responses...... I feel like this is the only place I can come and talk to people who know about medicine! 

"So I want to have an intelligent conversation. I tried posting in the cancer group and people were telling me diet and nutrition to fix all my health issues...... Please don't say that. So I have rare blood cancer that is chronic and I have genetic mutation jak2. Well I've had dysautonomia and IC/bladder problems since I was like 6 years old. Diagnosed with blood cancer last year at age 34. They put me on Jakafi, a jak2 inhibitor, an immunosuppressant that literally wiped out my white blood cells and made me sleep all the time. Finally a local oncologist had me wean down and took me off of it b/c my numbers were so low. After getting off of this medication, my dysautonomia and IC got SO BAD SO MUCH WORSE to the point that I can't hardly leave my bed. It's really really bad. So basically, suppressing my immune system made my other conditions worse, much worse, especially dysautonomia. Now my first thought was an infection. Jakafi is known for allowing infections to go wild or making you susceptible to infections but I think there is an underlying cause. Also ivig is really the only thing that has helped, and saline iv's and they won't give me either. I wanted to know what y'alls thoughts were concerning the immune system, possible infectious disease, infections, and a huge worsening in dysautonomia and Interstitial cystitis. I googled infectious disease and autonomic dysfunction and found this govn article: https://pubmed.ncbi.nlm.nih.gov/28730326/ ." Now I have since found an article about the relation b/w the immune system and dysautonomia. In this article it mentions chronic infections AND "bladder outlet obstruction", out of curiosity I looked BOO up and it fits me to a tee. I think that's what's going on as no IC treatment has helped. Now there are fixes and minor surgeries and it recommends the ONE THING THAT HAS HELPED MY BLADDER - alpha blockers. As I've mentioned before Rapaflo is the only thing to help my bladder but I can't take it because it lowers blood pressure, I found that out the hard way. "Importantly many commonly prescribed pharmaceuticals for management of otherwise seemingly unrelated diseases, including depression, hypertension, heart failure, asthma/airways disease, overactive bladder/bladder outlet obstruction, Alzheimer‐type dementia and glaucoma, mediate their effect by moderating the peripheral autonomic nervous system and therefore may contribute to, or mask, autonomic dysfunction." Also, "

Suppression of chronic infections

As the inflammatory reflex can be activated by pathogens, reports of individuals in whom chronic infections are ultimately identified as the stimulus for POTS are to be expected. Local epidemiology should be taken into account in selecting relevant investigations for occult infections. It may be worthwhile prescribing antivirals at suppression doses for patients experiencing frequent recurrences of herpes simplex virus.

The last two come from an article: https://onlinelibrary.wiley.com/doi/full/10.1111/imj.13216

The people in Dallas denied my referral and the rude secretary said "you don't have autonomic dysfunction". It was crazy. The tilt table tests show it. But my case is quite complex. And wondering how she came to that conclusion based off of a referral and limited records. 

42 minutes ago, Pistol said:

Dear @sophiagrace - after years of having to go to ER and being admitted to hospital every 6-8 weeks due to syncope, seizures and inability to be upright from POTS ( each time getting IV fluids with complete improvement ) my PCP finally approved me for a port and home infusions. They have changed my life! I have had the port for over 2 years and get 1-3 liters of LR every week, I have only been in hospital once since starting the fluids, and barely ever have seizures or syncopal episodes. My BP has come down to normal, even low, levels and I could stop and minimize some of my meds. 

One of the reasons my PCP finally gave in to my request for a port and home infusions was that often ER docs and hospitalists refused to give me IV fluids b/c I could drink ( I always peed all oral fluid out faster than I could take it in, but not so with the IV fluids ). 

Of course it was already proven and well documented in my medical record that IV fluids worked like a miracle on my often unexplained severe POTS symptoms, so I did not have to convince him of that - only that I needed them weekly rather than only during flares. They do not only help as a treatment but also as a prevention of POTS symptoms. 

Here is an article you can show to your doc that was written by Dr Blair Grubb, one of our Top autonomic specialists internationally. It explains that IV fluids are a proven, effective and approved treatment option for POTS, especially of medication refractory.

Effects of intermittent intravenous saline infusions in patients with medication-refractory postural tachycardia syndrome - PubMed (nih.gov)

Before the port I had an order to get 1-2 liters weekly as needed for 4 weeks when in a flare, but I always had to wait for the flare to come before I could get them as an outpatient. Now, since I get them every week, I don't flare as frequently and not as severe as before. 

I hope this is helpful to share with your physician! 

I don't have any veins just one and it's all scarred up so I'd have to Get a port. I think that's the issue with me. 

On 12/31/2020 at 9:44 AM, Mike Fong said:

https://www.mayoclinic.org/biographies/cheshire-william-p-jr-m-d/bio-20053262

Mayo Clinic in Jacksonville. Specializes in dysautonomia. Scheduled 2-3 months out.

thanks that is the closest place to me I'm scared of mayo just b/c I've been 4 times starting at age 17 and they kept telling me to see psychiatrists but maybe now with the tilt table tests and the cancer, I won't get pushed aside 

8 hours ago, LisaMarie said:

Thank you very much for your information, I just checked back, didn't realize there were more replies.

 

I agree about the ADHD diagnosis, and I also know that it's a really imperfect science and Autism spectrum, learning disabilities, processing disorders, or just the brain fog from no sleep and hypoxia can look like ADHD.  We were pretty careful about getting the diagnosis but also pretty cautious now about believing it on face value.  We do know there is something up in addition to the POTS, although it might be connected, and it's so hard to tease it all out.  We dropped the Clonidine like a hot rock because it made her so sick, we figured out it draws potassium so she had some bananas and felt massively better, but we'll not go near that again.  She is now using a very low dose of Doxepin, it is not addressing her focus issues but it is allowing her to sleep for the first time -- well, in living memory!  I am hoping when we start school again this week the sleep will help her focus.  

We've been checking her bp as per doctor's request, there have been some mornings where her pulse rate is 54 lying down and then 157 standing up.  She can't stand for long enough on those days to test it a few minutes later.  Frankly, I don't know that this didn't happen before the Doxepin, though, as we didn't directly test, just went off how she felt and acted.

I think you are absolutely right about the adrenaline, I think it's hard for us to untangle it all because she's never really known things to be any different so we don't have a baseline to compare.  We do see a cardiologist soon.  I also think it's obviously very stressful to have a chronic medical condition and that has to be factored in, also.  Her sister has Type 1 diabetes so there is a lot of daily reasonable stress from all that.

 

I really appreciate you giving me your opinion.  Very helpful, and if you have any opinion on the above that will also be appreciated.

 

I developed IC when I was just 6 years old, still have it worse than ever. Then somewhere I developed a rare chronic blood cancer called Essential Thrombocythemia and they don't know how to treat it except suppress the immune system, and upon doing that, I have gotten so sick with dysautonomia I can't leave my bed much. The dysautonomia started around 2008, I asked for a beta blocker and nobody listened they put me on zyprexa to knock me out and I ended gaining like 100lbs that I have since lost and it was brutal withdrawing from the zyprexa. Most of my life I was treated like a psych patient and I knew deep down all these conditions were connected and that they WEREN'T psychiatric. So I get concerned with other people going down that path. I  went to a major medical facility and the first thing he told me was to see a psychiatrist and I refused, he got mad, but I had videos of me having seizures, movement disorder, severe fatigue I couldn't talk, other neurological things and my platelets tested 600,000  but he didn't look into it. Anyhow, I hope your daughter gets help. 

15 hours ago, Pistol said:

Hi @CallieAndToby22 - oh my, you sound so frustrated and miserable! I am sorry. --- 

I have found that changing any medication can cause POTS to get worse.

I too have IC, along with inflamed joints and other generally inflammatory issues. My autonomic specialist states that they have found a link between autoimmunity ( having to do with the innate immune system, not autoimmune disease ) and that would explain so many of my symptoms and flares! He is putting me on Plaquenil ( Hydroxychloroqine ), but I have to have an eye test first, so haven't started it yet. He said it will help for the POTS as well. I think being in a constant state of inflammation causes so much stress on the body that it causes POTS symptoms. 

 Well - mostly I try to avoid it! I understand that is not very helpful to you but for me it is vital that I stay within my limits. I only do thn=ings like doctor appointments or other trips out of the house when I am stable, I cancel them if it gets too much. I rest if I know I am stressed -  or will be - and exercise carefully. 

When I was at my worst and still working my seizures and syncopal episodes were uncontrollable. What helped to minimize them was becoming disabled and housebound ( which enabled me to stay within my limits, therefore avoiding triggers ), my medication combo and - most of all - weekly and as needed IV fluids. They also help with stress!!! Having my cardiovascular system stabilized prevents the dumping of adrenaline ( for me ) and therefore I can endure some stress. If you have never tried them before I would ask your doc. In many cases IV fluids can help restore normalcy of the ANS, even if just used as a last resort. Most docs order them weekly for a month in flares. 

I do need the iv fluids. That would help! I've tried them only b/c my mom is a nurse. But neither my PCP or cardiologist will allow me to do it. 

I've been having a lot of stress lately. I'm stuck in a loop of needing medication to calm down, being fatigued, trying to go to Goodwill but starting to faint, and constantly going to the bathroom, trouble sleeping. How do y'all deal with stress? Right now I'm dealing with so much, on top of the dysautonomia I have blood cancer and IC, it's a deadly combo and all my doctors dropped me except my PCP. Vanderbilt told me to quit calling, lol, but man I'm desperate. 

One thing I will mention, hopefully somebody can answer this...... ? I was given Jakafi for my blood cancer and I'm genetically Jak2 positive. It was only supposed to regulate cytokines, help symptoms, and reduce platelets but it depleted me of white blood cells. While on this med for 3 months, I slept all the time. I was taken off of it and my dysautonomia has gotten really really bad, so much worse. So I'm thinking that destroying my immune system has something to do with the dysautonomia being so bad and this is when I started having autonomic seizures. Could there be an infection??? I just don't know. I've never seen an infectious disease doctor.. I don't know what happened but I went from swimming every day to now I take a bath and feel like passing out, eat something small and fall asleep. So they aren't giving me anything for the cancer, I'm not sure what to do at this point except I have a referral for Vanderbilt. 

On 12/22/2020 at 5:34 PM, flowntheloop said:

@CallieAndToby22They are all so precious! 

Thanks. Your dogs look so cute too. 

On 12/22/2020 at 12:14 PM, flowntheloop said:

Some of my mixed media art on canvas

Really great! I love the first one! 

23 hours ago, Ashc said:

Great job. Her voice is angelic. I love that song so much. It makes my heart ache for some reason. Happy new year to all!

Thank you! That's me! Appreciate your kind feedback. Hymns and carols are so special. 

On 12/29/2020 at 3:14 AM, David Smith said:

Well done on putting this together as it was a lot of work for someone with Dysautonomia!

Silent night is such a classic. Even though I sing hymns and modern Christian songs at church regularly, there is something about Christmas carols like Silent Night that deeply move me, often to tears of gratitude.

It's very special doing an item with your family too - a memory you can all cherish. 

Thank you so much David. This was a lot of work for sure! We all recorded at different times, then I had to mix it, make the video. But my grandfather cried when he saw it. I wanted to add bass but I was too tired and it honestly does not need it. Appreciate the kind words. 

On 12/29/2020 at 7:38 PM, Pistol said:

@Nin - I have autonomic seizures and I am told that my eyes remain open during them. I definitely do NOT have epilepsy, that was ruled out. Also my autonomic specialist has witnessed one of my seizures and said it looks pretty much typical for an  autonomic seizure. 

Yea I do believe my eyes are open as well. 

On 12/27/2020 at 5:08 AM, Pistol said:

@CallieAndToby22 - since all other measures have failed for the IC - have you ever considered the nerve stimulator that gets implanted in the bladder? I think they do that in cases that do not respond to medical treatment and are considered severe. 

I have the interstim, it was placed about 5 years ago. 

On 12/27/2020 at 9:28 AM, Rexie said:

I’ve taken Himalaya Bacopa since 9-14-20 starting with ½ tab (500 mg whole plant powder and 250 mg whole plant extract per tab) with amazing pain relief results – covers both CRPS and IC. Just ½ tab the first day made an evening walk the most muscle-loose, pleasant walk I’ve had since encephalitis in 2012. I stopped for 5 days to try a script of tramadol courtesy of a new PCP but quit both the PCP and the tramadol and returned to Bacopa which is on par with tramadol without the narcotic undertone. I now have good pain coverage using ½ tab morning, afternoon, and before sleep at night. I have also routinely taken Himalaya Ashwagandha since 2016 for muscle stiffness and agitation and it is a great help in IC, too (3-4 tabs a day; each tab contains 380 mg root powder, 280 mg root extract, and 10 mg supercritical CO extract). All my endocrine and standard labs are excellent and better than before Ashwagandha. Both herbs have good safety records. Haven’t had a nasty IC flare since starting Bacopa and put in a new garden area and run my business happily with better focus and concentration. My only regret is that I need to keep taking the herbs. But all things considered, I am grateful for both herbs and the feeling of normalcy they allow me. 

My older EDS friend who fractured her pelvis had stopped communicating and I found out she was dealing with intractable, all-consuming pain. I recommended Bacopa to her and she has had remarkable success with pain management, too. I had missed her – glad she’s “back”. 

For herbs, source is important with regards to standardization, guarantee that the product is what it is suppose to be, and the product remains consistent and reliable over the years.  

For IC I do still use Prelief (calcium glycerophosphate) and CystoProtek. 

Documented actions of Bacopa: 
The Molecular Links of Re-Emerging Therapy: A Review of Evidence of Brahmi (Bacopa monniera), 
Deepali Mathur, Kritika Goyal, Veena Koul, and Akshay Anand, Front. Pharmacol.; 2016: 
https://www.frontiersin.org/articles/10.3389/fphar.2016.00044/full 

Pain management with Bacopa: 
Preclinical Profile of Bacopasides From Bacopa monnieri (BM) As An Emerging Class of Therapeutics for Management of Chronic Pains, Rauf, Khalid & Subhan, Fazal & AM, Al-Othman & I, Khan & Zarrelli, Armando & MR, Shah, Current Medicinal Chemistry, Vol. 20, 2012:  
https://www.researchgate.net/publication/233842854_Preclinical_Profile_of_Bacopasides_From_Bacopa_monnieri_BM_As_An_Emerging_Class_of_Therapeutics_for_Management_of_Chronic_Pains 

Minimal side effects: 
The chronic effects of an extract of Bacopa monniera (Brahmi) on cognitive function in healthy human Subjects, C. Stough  J. Lloyd, J. Clarke, L. Downey, C.W. Hutchison, T. Rodgers, P.J. Nathan, Psychopharmacology; 2001: 
https://www.gwern.net/docs/nootropics/2001-stough-2.pdf 

Constituents and actions: 
Neurocognitive Effect of Nootropic Drug Brahmi (Bacopa monnieri) in Alzheimer's Disease, Kaustubh S. Chaudhari, Nishant R. Tiwari, Rakesh R, Tiwari, and Rohan S. Sharma, Ann Neurosci., Vol. 24(2), pp.  111–122; 2017:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5448442/ 

Thank you! I'm very tired now but I see this is valuable information.