cberau

I don't know about ME, but I am on Mestinon, which was both used for Myasthenia Gravis and as a nerve gas antidote in the Gulf War, and it has helped my muscle weakness symptoms quite a lot. Pretty much the only effective med I'm on. It does come with side effects, but overall the net benefit is good.

Yeah I keep getting censored so maybe my answer was wiped out somewhere. We haven't really looked into the calcium (didn't concern Dr. Goodman because it was only slightly elevated, although I'm a little concerned about the amount it increased from a year ago). We never check my PTH or anything like that. The doctor said the low cortisol was a little alarming, and to keep an eye on it. I haven't really worried about it, I'll get it checked once I'm back in Chicago. I've been busy getting ready to move. If I'm told my heart is totally fine by numerous doctors then I'll take that answer. Never did figure I had a heart problem, my kind of hyper pots is just more like unnecessary exercise. I just started gastrocrom, it's at least made my eyes a lot less blood shot than they normally are in a few days. I haven't really paid any attention to my pulse or bp since going to mayo last, I've lost confidence that any of it's really going to be able to be changed. I'm feeling slightly better, but I don't know if I feel better enough to justify the extra $50-60 a month in meds. It's always hard for me to say what's a symptom and what's a side effect. It's all kind of a blur. My mom has big thyroid problems, especially after getting hers destroyed with radioactive iodine. My thyroid hormone is rather unstable, I know that, goes to both ends of the spectrum. Never felt any different on meds for it. I'm at the point where I've pursued pretty much every answer I'll be able to get, and the fact is my situation probably isn't going to get meaningfully better, I've tried most of the meds out there, exercise is **** near impossible for me and I really do try.

I got shingles recently too. I used durham's wonder salve, and the acyclovir regimen. That seemed to take care of it, I don't think I had a very bad case though, and caught it within a day, it was only a small spot, but man it hurt.

Yeah I might look into it at some point, depending where I end up if I get a job somewhere close to there or something. Dr. Barboi is excellent and well rounded, definitely has to be one of the top guys in autonomic neurology, he doesn't really advertise it though. Really humble. I like dealing with Rush, I was only going to mayo here in AZ, because it's only about 2 hours away. Dr. Barboi is like 40 minutes from where I'll be moving back to in Illinois.

I wouldn't say I'm exactly happy with my care at Mayo, I think being on better meds now is just luck, I mean they all would have been stumbled upon at some point anyway. Since I'm moving back to Illinois I'm continuing care with Dr. Barboi at Rush University. I couldn't possibly be more happy about the care at Rush, they are purely excellent. Yeah Dr. Goodman at mayo told me to just not take my blood pressure because it doesn't mean anything. He's like (you can obviously tell when you're having high pulse pressure without a BP cuff, so stand up and pulse pressure goes down, if you feel like you have low pulse pressure, lay down). I was told not to worry about my heart rate and blood pressure, because I don't have any heart problems at all, purely hyperadrenergic POTS and some other autonomic issues, so I have nothing to worry about and it's absolutely pointless to measure my blood pressure. He says measure how you feel, not the numbers, because everything else has been ruled out for me. Dr. Barboi essentially says the same thing.

Oh no I think you misunderstood me. I said the doctors said it was contraindicated in MY case specifically. There are definitely still hyper pots people it helps. My BP fluctuates too fast to be dangerous apparently so they don't really try to manage it. I was told to look at it as more of a "sports exertion" kind of high blood pressure than a hypertension problem. It's 230/130 one second and 80/45 the next. I have no heart problems whatsoever nor do they think I'm at any risk of heart issues. I'm not trying to tell people not to try it, just sharing my experience. I think especially with hyper pots other peoples' experiences with things don't matter as much as the average person because we are pretty messed up in weird ways.

I've got hyper pots with standing norepinephrine of over 1700pg/mL. I was on midodrine prior to that, with no good effects, just gave me more palpitations and the itchy scalp, goosebumps side effects. Both Dr. Goodman and Dr. Barboi said in my case midodrine was contraindicated for me, I was only on it because my PCP was trying to help with her limited knowledge. I find I'm doing better on 10mg nadolol (bisoprolol and propanolol did nothing for me, propranolol with midodrine gave me horrid palpitations with bradycardia supine). I'm also on 90mg mestinon (really helps with brain fog, muscle weakness, GP), double dose H1+H2 blockers,1500mg quercitin (natural mast cell stabilizer, but I'll probably end up on gastrocrom), and 40mg prilosec. I'm also taking 5,000IU vitamin D per day, can't really tell if that's helping. I was on 20mg midodrine at the highest and 5 mg midodrine at the lowest...all doses gave the same results. Edit: Forgot some meds, I'm also on 2mg xanax at bedtime, along with 0.2 clonidine at bedtime. First sleep cocktail that works for me without giving me a nasty hangover! lol

I had very low cortisol at 1.6 6:48am. Dr. Goodman wants me to retest that soon, it was fine in may. I think it was due to me being severely exhausted and awake for 2 days though...

Yeah you'd be surprised these days. What seem like sexist questions towards women about anxiety, hormonal issues, other psych issues, they have all been asked towards me. And I was going to the aviation equivalent of Harvard, am. 6'7 and have no history nor any present signs of a mental illness. They really do ask everyone these questions, and act like the answer is always yes, because it's easy for them.

I'm very hyper pots and Dr. G at mayo told me to have as much as I can, and actually decrease water a little, because I drink an excessive amount of water by default.

Mine varies back and forth (usually on a weekly to bi weekly basis). I don't often have cramping, I do have some bloating. I go from a 7 on the bristol scale to a 1 and anywhere in between. Very inconsistent. My nausea has been all but cured by being on both H2 blockers, Prilosec (and domperidone when I feel like I am having GP issues). My appetite is crazy inconsistent, sometimes people ask my if I'm anorexic, other times if I am in fact a pregnant woman. It's bizarre.

Yes! This all started happening when my POTS started getting extreme in 2010, and I had never had a cavity, chipped a tooth, had any sensitivity at all. November 2009 all teeth perfect, clean, not soft. Once POTS kicked in and I started vomiting like 10 times a week, making sure I brushed like crazy afterwards and drank plenty of water to wash away the acid, I had 7 cavities by May 2010. My teeth are trashed like a meth addict now.

Salt salt salt. Is you're sodium good from a PCP perspective, or a POTS neuro perspective? That is one big factor. I was urinating 6 liters a day, and had a very high sodium diet. Well according to mayo, it still wasn't enough, so now I'm popping thermotabs like candy and trying to eat even saltier, my urine volume is going down quite nicely.

It happens a lot with me, low heart rate, high pulse pressure, therefore thumping palpitations. I've been told repeatedly by some of the best POTS docs (keep in mind I have benign ECG and Holter results) that it's no big deal. However now that I switched to nadolol from propranolol, I'm not having any issues.

Thanks, everyone. The trip went pretty well, got a lot more than I thought I would have covered with Dr. Goodman. He basically said to stop worrying about my paroxysmal hypertension, that it really isn't an issue. I'm fine with that. He took me off propranolol and onto nadolol. Other things I didn't expect, put me on mestinon during the day and clonidine at night time also. I hadn't thought of that combination, but it would make sense to get rid of my hot flashes and high pulse pressure supine, as I didn't do well with clonidine during the daytime. Plus 2 mg xanax which I already use to get to sleep, and he had no opposition to it, and I was out like a light last night, got a full 8 hours sleep. Only on my first dose of mestinon right now, certainly not feeling any ill effects, and body temperature is ok. Told me to stay on my double doses of H1 and H2 blockers, he didn't see any signs of mastocytosis, but said maybe MCAD is still an issue, we will evaluate MC stabilizers at a later date, lets just try and get me stabilized on a good cocktail of meds for now, but said yeah I will likely end up on gastrocrom, I agreed it's not my highest priority looking at the big picture, the chronic symptoms of hyper pots are the biggest issues for me right now. Apparently all my vitamin levels are healthy now, so I guess my prescription of D did the trick, I've never had any other deficiencies. He was concerned about my horribly low cortisol, even though I told him I was awake for 60 hours when I had my AM cortisol pulled, so he told me to get another test with a full night's rest. Still said I need a crapload more sodium, so I'll just keep popping those thermotabs like candy, they don't do anything bad to my stomach like regular salt tablets. He also allowed me back on a PPI prilosec in addition to H2 blocker because I have such horrid nausea and GERD, and I said the prilosec definitely worked for me, but for some reason some doctor wanted me off it but I can't remember who or why. He said my use of domperidone, and why I use it when I do (when I feel like I have motility issues) and the fact that it works could point to some GP happening, but he will see what the mestinon does for me in that area, and if I'm still needing my domperidone, then we can see a GI. Told me to buy compression gear, try elevating head of my bed again, when I went to buy bed risers last night I also got a gel cooling pillow, and I slept very well. I'm satisfied with the progress so far, definitely better than I was expecting given how my first consultation went with him. I think he definitely just waits to get as much information as he can before he starts talking.

Thanks. I just don't know how I'm going to get out of this debt from going to stupid ERAU (which was a bad decision, that I was pushed into, in and of itself). I'm so worried about health insurance come 3 years from now when I'm off my dad's insurance. Today, I did get requested for an interview at a Tesla dealership in Chicago, which could be a nice job for me, similar to selling stuff in an Apple store I guess (given the target customer), and I would probably be able to sit down enough. Well, I'm about to get started on my 2 hour drive to mayo to see Dr. Goodman again, thank you everyone, I am trying as hard as I can.

I'm leaving here soon, I had a job at the airport, but I recently got asked to resign. I'm living in a house my dad owns here, but we listed it for sale last week, and I am probably moving back to Chicago. I really don't want to go live with my dad, but I'll be closer to Dr. Barboi at Rush University, who so far I prefer to mayo.

Well I did just find something positive about all this. My short term memory has seriously gotten horrible, and I just woke up thinking I had nothing in the house to eat for breakfast because I couldn't get myself to go grocery shopping. Well, actually I did last night, so I was surprised with breakfast stuff.

Thank you guys for your words. I just don't seem to have any fight left in me. I have felt absolutely miserable for at least 10 years now, didn't even search for treatment, but tried to hide it as best I could because I was a pilot and I couldn't let the FAA gestapo find out what was going on with me. I was forced into flying by my father who has an absolutely toxic personality, and I've been living alone for 4 years now for school, more than a thousand miles away from any family, which is kind of a good thing. But now I've gotten so bad, all my friends here want nothing to do with me, some have forgotten I'm even in town, and the rest have left town. I probably need to start discussing disability but it's just so ridiculous for me to comprehend that I need it at 23 years old. I have no idea what's going to happen to me after I get off my dad's insurance when I turn 26. I can't have a job right now, and government healthcare is absolute garbage (I have experience with it, I'm from New Zealand, the healthcare system there blows and it's supposed to be the best free-healthcare in the world). However, I am thinking about trying to get down to New Zealand simply because it is a welfare state and it would be easier to get help from the government (but healthcare is slow, more often than not too slow for cancer patients that don't have cash on hand). I can't stand the idea of living off taxpayers though, it just makes me feel icky inside. I mean after 10 years of hiding my pretty severe symptoms of the vomiting and flushing, sick all the time, I started getting a reputation with the flight training department that I was a very unreliable, unhealthy person, and that alone is enough to ruin your career. My career was doomed before I even got diagnosed. I have spent the last 4 years with no one immediately near me that is any more than an acquaintance, I have absolutely no one to call on. I live in a rather isolated town 100 miles north of Phoenix. I'm sure, being hyper pots, the amount of stress, dealing with such unforgiving people (aviation people are not my favorite), having to hide my illness (like really really hide it because aviation people watch) has just damaged me beyond repair. I went from never having a cavity until 3 years ago, and now almost all my teeth are rotted out because I vomit over 10 times a week. I haven't had any sort of romantic relationship since high school, nothing even remotely close. And I can't envision ever finding someone again in my wretched condition, especially as a male. And I really don't do well single. I still do function and get groceries, and housework etc, but only at the very last minute when I absolutely have to. I just want to have something to be excited about.

Does anyone have any suggestions about how to get over depression stemming from this condition. Mostly because I have lost so much because of it as I'm sure you all have, but I just can't see any light at the end of the tunnel, I get no reward from anything I do, ever. I've gotten to the point where people tell me I just have to think positive, which to me are just useless words. I'm not religious, I never could be. I'm a very scientific person who operates on logic. If you were to compare my life against Maszlow's hierarchy of needs, I'm getting none of them. I have extensive education in social psychology and abnormal psychology, and have sought help with these mental issues, and even therapists after looking at my entire life situation tell me that my depression is rational given the facts of my situation and therefore couldn't really offer any help. This mainly makes it almost impossible to make it through every day because I don't see myself getting anything out of it. It's hard to think of anything that I could occupy my time with to take my mind off the situation because I feel so physically miserable all the time, therefore I attach a negative feeling to everything I do. I can't imagine anything I would want to do with myself after irreparably losing my career of flying with an absolute lifetime ban on flying due to any form of dysautonomia. After all the different types of treatment I have tried since being diagnosed, drug and non drug, I do not have any net improvement, and since I have severely hyperadrenergic pots, taking into account the gradual onset of it, I really don't have any hope of the condition improving outside of hopefully finding different treatment that manages it better. But the underlying condition as far as I can tell with the evidence I have will only get worse. Where do I go from here?

I have definitely heard of it helping people, but not me so far. I've tried wellbutrin, zoloft, effexor, lexapro, and mirtazapine and never really got a net benefit from any of them.

Yeah I would say about 3 hours also. At least you feel it for about 3 hours. I definitely got the tingling scalp and goosebumps from it. Then they found out I am extremely hyper-pots so no more midodrine for me.

Yeah I got a 134 on the methylhistamine (200 is top of the reference range), and an 835 on the BPG2 (1000 top of the reference range). I wonder what that could mean. My tryptase levels are normal.

I've searched the forum and internet for any information on this, but I took a 24 hour urine test for these things at mayo and the results were high normal. I don't think they consciously knew I was actively taking antihistamines during the test, and I was wondering how much of an effect Allegra and Zantac would have on the results, and if it could be a false negative? Anyone have experience with this?

Welcome! Hopefully the camaraderie will help you as it does a lot of us. It's always good to keep a humorous attitude about the garbage we go through lol