mkoven

I did get a scooter several years ago--more for my joints than ans at the time. the problem is it is big, bulky, hard to disassemble. It is great to be self-propelled. It lives in my office, and I use it for crossing our very large campus. It would be such an ordeal to take it apart and bring it home, and I certainly couldn't do it alone. But I do use scooters in the grocery store if my walker isn't enough. (The odd thing is, I can actually feel woozier if I'm being pushed or if I'm scooting. Like motion sickness, almost. If I can walk, that doesn't happen).

I'm the lone weirdo in my family. I also never had migraines till my late 30s. But I've been told that migraines and dysautonomia are related--that migraine is a form of ans dysfunction--just more episodic. My migraine doc told me that migraines and dysautonomia "live togehther" or are "comorbid" conditions.

I'm supposed to stay away from estrogens with my funky migraines. Since I'm doing this more for symptom relief than for bc, this seemed like a very conservative option. My periods themselves aren't that bad (sorry if too much info) , it's just how lousy I feel from ovulation on. It seems like the whole area of hormones, esp. the whole bioidentical controversy, is one where opinions are all over the map, and there aren't a lot of data. It was actually my new eds geneticist who recommended trying this. The trick is when I look on line, I just keep bumping into controversy, without a lot of data. It seems like the recent stuff from the women's health initiative was done with "synthetic" estrogens/progestins. But then the more mainstream response is that it doesn't matter the source of the hormones--even if it's your own body. And the bioidentical folks claim that "natural" hormones have to be safe. I don't know how to evaluate the controversy, and am generally reluctant to try new meds. But if the cream helped even a little with some of my many hormonal symptoms, and if it's safe...

A doctor I just saw thought I could try progesterone cream for my miserable hormonal flares-- less of a deal than the pill. Any experiences? It's available otc.

I had only been drinking one cup in the morning, but recently was having such fatigue in the afternoon, I've added in another cup in the afternoon. I don't know that it helps with all my symptoms, but does help with energy and concentration. I'm trying to be consistent though=-- just one more cup, no more, always around the same time of day. And I have to be careful if I have it out. Two days ago it was starbuck's which is WAY stronger than what I make at home, and I felt so wired I could barely stand it.

With my insurance I rented one, and after a while, they bought it. With my eds, I can't really wheel myself without shoulder issues, so use it if my spouse is there. I don't always need it, but it's like an umbrella. We take it in the van along with my seatcane. I have a much easier time going on a walk where I'm in constant motion without it. But stop and start, as in shopping or museuming, kills me. so it always comes along if we're going to do something like that. I don't think they're so expensive, but it was no problem getting it approved with a doc's rx. and my doc knows that I try to be as active as possible. it just gives me more freedom to do things that I otherwise wouldn't be able to.

Yup. typical for me before meds. by the time i got to the er, complaining of wanting to faint, they'd look at me like i was nuts, because i looked hypertensive!

I thinkk the 30mg max limit is not used by most ans docs. I take closer to 40, spaced out in four hour intervals. I think docs less familiar with ans are afraid of hypERtension--but I think that's something you can monitor. I actually get more spikes if I don't take it regularly--my body swings high to compensate for lows. With midodrine and florinef I'm usually around 115/75, rarely under 100/60 or over 130/80. Off meds, it was a huge rollercoaster-- from 70/30- 170/100.

I started at 2.5, then to 3.75, then to 5, now at 6.25. I have a pill splitter. I also take the brand name. it took me a little to adjust to each increase, but now barely any side effects, besides the occasional goosebump. I also pee less often.

I get a lot of these-- far more than I used to. Hormonal fluctuations definitely worsen them and I'm 42, so things are getting, well, "interesting.". My cardiologist had me increase my magnesium. I now take 1200mgs a day in two doses. (don't do without medical approval--that's a high dose). I still get them, but they're a little better, and for now, I don't notice them as much. If I take my pulse though, I probably get 4-6/minute.

It's hard for to take about cause and effect, but Cleveland Clinic prescribed cardiac rehab as part ot the treatment for me. Last summer I could barely walk a block without chest pain. Since then, I've added florinef and rehab--so can't say what's what. I should also say that I always wear my stockings, even though they're hot. I also wear a hr monitor during exercise. I used to monitor bp, but I don't now, in part because I don't want to drag the machine to the gym, and because I can feel when it's off--i.e. dropping instead of rising, and then it's time to slow down, or squeeze my muscles rally hard to help kick it in...I am pleased that I can now exercise hard enough that I'm pretty sweaty. Exercise helps so many of my other ills, including joint pain and headaches. If I'm at the very beginning of a migraine, sometimes a good workout will clear it. And it generally lifts my spirits and makes me feel like I can deal with everything else more effectively.

timing is key for me. i have more energy in the morning so try to exercise then. and i only increase duration in tiny increments--like one-two minutes per week.

Most docs will rx something so you can fall asleep. I didn't fall asleep very easily, but slept enough to get a diagnosis. Normally I'm out in minutes.

I've built up from mild floor exercises to pretty intense aerobic most days. Now I really miss it if I can't get it in. It seems to help with so many of my symptoms. I work out 30-35 minutes on the treadmill and then do various strengthening exercises for my hypermobile joints. At first I could go .6 mph. Now I work up to 4mph with incline. some days are harder than others, and if I feel bad, I slow down to get things to stabilize, before trying to ramp up again. And then I DRINK about 32 ozs of something with electrolytes. As I've said in the past, if I'm struggling, joint wise or ans wise, it helps to increase incline rather than speed.

The only thing I can think of, frankly, is a bladder infection. I've not had that problem with florinef, and am not sure if it could be related. The only side effect I've noticed with florinef was initially some jitteriness, which I don't notice anymore. Otherwise for me, for the last nine months it's been a terrific help. I take .075.

I'd be reluctant to take a supplement from any cow organ--I don't think the US supply of cattle is bse free, and the problem is most likely to be found in "glandulars."

I'm very sorry to hear that this happened. Do you know if the small vessel disease is in your brain or your heart? I think the current undestanding is that women are more prone to develop problems in the small vessels than the large arteries--so that we, for example, can have chest pain that is the result of narrowed vessels, but not the big vessels that can be seen during a catheterization. I believe this has caused quite a stir in the medical community.

I know apnea isn't the only sleep disorder, but I think it is underdiagnosed in general and probably for ans patients. I've recently been told that I have a "high arched palate," which is a hallmark of connective tissue disorders such as eds, and makes the back of my throat pretty crowded. And then there's the floppiness of the tissue as well. since a number of us have eds, I would imagine both of those things might be true for many of us who also have eds, making apnea more likely. It's hard to get doctors to consider apnea in people who don't "look" the part (which is a total stereotype--kids can have apnea!). If you have any inkling that there may be apnea--including a partner who hears you stop breathing, any waking up gasping, excessive sleepiness, please ask your doctor to consider a sleep study. I agree with goldicedance, that you never forget you're wearing a mask, but with it i'm actually getting some decent-quality, uninterrupted sleep, not depriving my body of oxygen, and not adding to the burden of my already taxed ans. untreated apnea sends your ans into freakout mode over and over throughout the night, and is rough on the ans of people without pots. getting used to the mask is an obstacle for many, but there are numerous mask options out there now. i actually find that putting on my mask now MAKES me sleepy, as I associate it with bedtime. and whenever i fall asleep in front of the tv or in the car, i'm reminded that i need it, as i feel so terrible when i sleep without it. Okay, rant over.

My current pcp, who is interested in ans issues thought it might be good to see if I have any nutritional deficiencies, so ordered a test called the spectracell. it apparently tests your white blood cells, not the serum level, as, theoretically this really measures what your cells have absorbed. but I can't tell how serious this test is, or if it's sort of fringey. anyway, i showed deficienies in niacin, b12, selenium, and coQ10. the funny thing is i already take 200mgs of coq10! anyone else have knowledge of opinions? I'm happy to take some supplements if it will help something, I just don't know what to make of the test, as it doesn't seem to be commonly used. on the other hand, most docs aren't necessarily interested in supplementation...

I take midodrine AROUND THE CLOCK, including before bed and when I wake up if it's about four hours later, in the dead of night. I know that this is not officially what's recommended, but I was getting so sick when I'd get up to use the bathroom that it was triggering chest pain. We found that adding pm midodrine at night helped a lot. I also sleep with compression stockings for the same reason. I did not decide this on my own, and am followed by my cardiologist who supports this. I do not seem to get supine hypertension on it, which is really the main concern. From what I understand, most of us do not develop supine hypertension on midodrine. It's more typically a population with Parkinson's. But doctors not familiar with this drug have often a knee jerk reaction about never lying down on midodrine. you could try during the day and see what your bp does on midodrine in different positions.

maybe a week. i found apneasupport.org helpful. they recommended getting used to the mask while awake to desensitize yourself- so i wore it while watching tv. i also had to play around to find the right tightness to minimize leaks. now, really no problems. my sleep is so much better. and it basically eliminated the wacky neurological aura migraine symptoms with middle of the nigth excruciating head pain--immediately. i was dropping my oxygen and it was trigging killer migraines. i also stoppped having nightmares that someone was trying to suffocate me, and stopped needing to pee all night long. it hasn't cured me of all that ails me, but i would be much worse off without it. also helps my general acheyness.

I'm a big fan of treating apnea. it's made a huge difference in all my various ills. Took a little while to get used to the mask, but now won't sleep without it. i feel crummy if i even fall asleep in front of the tv without it.

I take it 5-6 times a day. I think three times a day doesn't make sense for a lot of us, since it doesn't last long enough-- unless you only plan to be up and about for twelve hours!

I always have to have it in me, so every four hours around the clock. If I'm a little late before bed, it's okay. My worst time is mid-late afternoon. Have to make sure I'm covered then.

I wonder the same thing. for me, an fm diagnosis probably wouldn't gain me much. my muscles are in spasm because of my eds, and my vital organs "stealing" blood flow from them, with my ans symptoms. And it's a diagnosis many don't take very seriously. so for now, i'm not pursuing it.