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cberau

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About cberau

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    Advanced Member
  • Birthday 09/09/1990

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    Male
  • Location
    Prescott Valley, Arizona

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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
  8. 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...
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
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