CallieAndToby

I do have horrible bloating!!! And huge stomach at times :(. Thanks for the tips, I'll have to look more into that.

I actually do well with dairy. I just eat simple flan, whips (light mousse yogurt), these real French puddings with vanilla, and sometimes I just grab a cheese stick. I don't do well with: corn, fast food, high carbs, spicy stuff, acidic, and salads are very hard to digest across the board. I'm mostly vegetarian so I find that black beans and rice is really great and oatmeal is great, I also eat a lot of nuts. I feel really sick after eating greasy chips...

Yes it helps. I wear it when standing. Also so comfortable and easy to put on and off.

Thanks, yes it's horrible and I'm not recovering these days. My beds are uncomfortable, so much adrenaline, bladder. I was just hoping for relief now. It's been horrific since October and I asked my doctors then to refer me.

Yes some are cardiologists and some neurologists but I can't find anyone. She already asked Baptist Health neurology and nobody responded. I have an appointment to UAB autonomic lab but they just do the testing, so I need somebody local. I'm getting sicker and sicker and traveling is too hard, it's really nearly impossible as it leaves me crashed, fatigued, sleepless, incapacitated, and with horrible post exertional malaise (I just returned from Jax Mayo oncology and endocrinology and I'm in dread of traveling again). Just thought I'd ask in case somebody knew of someone.

So I've got a: PCP, Oncology, Endocrinology but still can't find dysautonomia. My PCP doesn't understand it and keeps saying she'll find an endocrinologist to help and she really downed the idea of saline iv's and talked about all these risks and my mom told her the alternative was having no quality of life. I do have appointment at UAB autonomic testing lab but they send the results to a doctor, that I don't have. I've seen all the lists but they aren't very extensive and some on the list have already denied seeing me... Just curious is somebody knew of some Jax cardio that happens to understand the medications really well and can interpret the potential results?

Ginger is helpful so sometimes they have recommended ginger ale. It's just a slight help though.

I have not. Thank you.

So with pretty horrific Interstitial Cystitis I can't drink anything with potassium or citric acid and that knocks out most electrolyte drinks. Even coconut water has a lot of potassium and flares me. I found a vanilla shake at one point that might've helped but it had tons of unnecessary vitamins and stuff in it that also bothered me. ATM I can only drink water, water + dissolvable salt tablet, and vanilla almond milk and pretty tired of that need something new would love electrolytes that do help. Also can't have: caffeinated, carbonated, or sparkling water. Last time I was taking electrolyte salt sticks I became so flared and in pain and didn't know why, I ended up at the urologist and after a cystoscopy they confirmed severe redness, inflammation, etc and we determined the salt sticks and after I discontinued my bladder calmed down a lot. Wondering if anybody has found anything IC friendly? I found I can drink horchata but that's not very helpful in terms of dysautonomia. I have asked on IC sites but they say they don't know what dysautonomia is.

I couldn't read everything in thread b/c I'm pretty sick but I was denied 3 times by paper and eventually had to get a lawyer and go to court for hours trying to explain everything to a judge who knew nothing. I basically told her that there were days and weeks that I could not physically get out of bed and she believed me though she didn't understand the laundry list of diagnoses or symptoms.

The biggest issue I have with electrolyte drinks is the potassium which burns horrifically for IC and the citric acid which is another burner. I have never been able to handle them. I recently got scans done at Mayo Clinic and I had to have a full bladder so I drank 4 bottles of water and some liquid and it helped constipation but my bladder was flared for days just from water, it was making me nauseous as well and I felt like puking and I started early in the morning. My bladder just can't handle much of anything which is so counterintuitive to treating dysatuonomia and low blood volume. Once I was passing out in a Target store and I quickly grabbed a sports drink and it helped a lot, I only drank half, but my bladder was flared for the rest of the week and for me that means urinating every ten - twenty minutes all day and bad at night.

I have horrific chronic fatigue and if I do any small activity whether mental or physical I crash and feel like I'm dying. I've had fatigue since I was a teenager and I'm confident that autonomic dysfunction in itself causes horrible fatigue. I saw a 96 year old woman dancing on tv and I looked at my mom and said, "she has more energy than me". So I understand what you're saying, it's very sad.

Great explanation, thank you! I think getting regular saline iv's would help me so much. I used to drink the salt tablets all the time and I still use the bathroom so much. I may need to re-visit desmopressin. As a kid I had to urinate so much and I would get in trouble in class and in high school especially so I trained myself not to drink much, not good, but in the end I had no other solution because they would write me up, etc.

That's good they do that, I'd never heard of any of this until reading the article last night. @Pistol What causes low blood volume? I think this is a major issue for me but years ago a doctor had me drink the recommended daily water and all I did was go to the bathroom all day long and all night for weeks. I got some saline yesterday than today the little tube dislodged from the vein and my caretaker couldn't hit another vein because they're so tiny and non existent. I'll be glad when I have a. port, if I can get one!

I was reading articles on saline iv's and I came across one on health rising and it said the following, "Anesthesia can be dehydrating and most of us are, as Dr. Klimas says, a quart or so low in blood volume." It actually recommends saline iv's after a procedure, etc. It's weird because when I was 19 I was given Brevital and I went into a very bad seizure. What I've garnered from the article is I must have very very low blood volume because saline helps so so much and when I get 4 tubes of blood drawn at lab, I am stuck in bed for days trying to recover. If anyone else needs the article: https://www.healthrising.org/blog/2017/04/15/saline-pots-chronic-fatigue-syndrome/

I have seen many EP cardiologists myself and none did any testing on me (A CFS doctor did TTT), I'm unbelievably sick and still no diagnosis for autonomic dysfunction. I do have upcoming appointment at UAB autonomic lab but I got sick at like 17 so it's taken decades!!! My cardiologist did the same thing with Northera "let's see if it works" then got really mad when it didn't. I only mentioned risks because I was put on a cancer medication that is very serious and should only be used for myelofibrosis which is pre leukemia, it is not yet approved for Essential thrombocythemia, the doctor told me all the great things then I got on it and declined and declined and was forced to stay on it, finally it wiped out my WBC and destroyed not only my immune system but my autonomic nervous system which was already in not so good shape. I went from semi healthy to blacking out while supine, dystonic seizures, and still nobody has helped and I'm still young and bed bound. It's weird because after a month on the medication the company sent a book like a massive book detailing side effects and I was way too sick to read. The oncologist ended up dropping me. So that's why I mentioned with this medication, because it does seem so extreme, that the doctor should talk about benefits and risks. I also had years and years of tachycardia.

I've taken medication without being given risks and one had a devastating affect on my entire health (immunosuppressant). I would definitely want him to go over risks with you and the other things I mentioned until you feel satisfied.

Has this doctor explained what he's trying to achieve with this medication? I would wonder why it's being prescribed. It's a very strong vasoconstrictor that raises neurepinephrine and blood pressure. I don't know all of the medications you're taking but I'd think he should explain why he's prescribing this. My cardiologist didn't explain anything when putting me on this medication but my old local cardio knew close to nothing about dysautonomia. Also, the medication is very expensive and most insurance won't even approve it. If it were cheap and generic maybe it'd be easier to try but it's just super hard to get covered.

Good job!

Yea all the stimulants just lead to me crashing very very badly. My cardiologist told me nothing about this drug and just said she's prescribing something to "help raise blood pressure" and I took It without researching and I wish I had done what you're doing @Heartbroken which is asking questions and researching and investigating. I asked my local cardio the mechanism of action and she said, "raises blood pressure". Hopefully you can push for more answers. @targs66 I still don't have definite diagnoses regarding dysautonomia but my blood pressure it so low, I was wondering if you've found anything to help that? I have a lot of of syncope as well.

I did not do well with Northera and I have low blood pressure but my old cardiologist blindly prescribed this to "raise my blood pressure". I don't do well with vasoconstrictors though, not at all, but this was a harsh medication and very expensive and it does raise blood pressure plus it made my adrenaline worse. After I took it I'd get more dizzy and tired and fall asleep then wake up worse than before I took it. I tried for a week and I was just in a crashed state the entire time and had to quit. I only took it 1x daily. I am very sensitive to meds, supplements, and vitamins, but after researching I also concluded that this should've never been prescribed for me personally. This is only my personal experience and I cannot speak for others. But like all stimulants it had the opposite affect and made me crashed and incredibly tired b/c of the hormones and chemicals it raises in the brain.

Be careful about cdiff. I've been on long term antibiotics and several times got cdiff even with flagyl on board. So whatever measures you can take like probiotics, etc. And just discuss it with your doctor. I just like to warn anyone doing this long term. Yes my grandfather is lucky but he said it was only because the bite was so unique to all the others and he couldn't hardly get the tick off.

Thanks for your response. I am just emotionally and physically drained. I have looked up dysautonomia and high testosterone and the dysautonomia international website says that they are not connected and if it's high it needs to be investigated; it's hard because I did reach a place in my life where I'd accepted where I was with my health and I was doing my best, then a new diagnosis appeared and cancer medication destroyed my health in a way that I never could have imagined.

Telemed appointment with endocrinologist was a bust. She freaked out b/c the testosterone is so high and said it could be ovarian cancer or adrenal cancer then she said she needed to do more blood work in 2 months and didn't feel like she needed to do any scans right now. What?????? She told me I needed to sleep and lectured me and I told her that I take a ton of pills and do everything I'm supposed to and I can't and she starts talking about psychiatry and I told her it was physiological and had to explain autonomic dysfunction. She couldn't understand constant adrenaline and kept calling it anxiety and I kept correcting her and telling her it was adrenaline. She wanted to put me on a blood pressure medication for acne and facial hair and I asked her if it lowered blood pressure and she said YES then proceeded to ask me why that was a problem after I explained OI and POTS.

My grandfather got a weird tick bite after a hurricane hit us and trees went down everywhere and he was outside using chainsaws and tractor to clean up, he'd been in the woods his entire life but said this tick bite was way different because it was extremely painful and the tick seemed nearly embedded. Anyhow I saw him a week later and he had a massive rash, not a bull's eye rash but a disgusting rash and we took him to urgent care and they tried to say it was shingles my grandfather said, "Do ticks cause shingles? No. Well it's not shingles. A tick caused this." With the testing it showed positive rocky mountain spotted fever and he had to go on antibiotics for about a month which worked thankfully because he was sick and I was scared of any long term chronic affects. I know chronic lyme is different but that's just a weird story with my grandfather. Good luck. And smart of you to see a cardiologist to check on the POTS.