mkoven

I must be a little odd, as I found it gave me muscle spasms. Michele

i get that when my elbow bothers me. I have loose elbow joints that sometimes pinch my ulnar nerve. i've also had medial epicondylitis, (aka golfer's elbow--as if I'd ever golf!). sometimes things can get pinched higher up at the shoulder, rib, or neck. if it persists, i'd get it looked at, but it sounds orthopedic rather than pots-related-- but I'm no doctor.

So I started my period this morning and my faintness is really bad-- MUCH worse than normal. I know that there have been a lot of posts about this. I'd otherwise been feeling better, so this is a bummer. It's odd though, as my faintness worsens in the middle of and immediately following a bad cramp--almost as if the smooth muscle contraction is triggering my faint. Does that happen to anyone else? If that's the case, would ibuprofen help both the cramps and the faintness??? Unfortunately I felt too unstable to go to work today. I hate calling in sick, 'cause I teach classes that one can't get subs for, so it always feels drastic.

I posted earlier about lexapro and sam-e for my pms-- both the physical and emotional sides. Anyway, I was chatting with my sister who has battled depression for years and sees a psychiatrist who works for the fda. He is really impressed by the evidence that bright light therapy helps many types of depression, not just seasonal affective depression. It has to be the right amount of light (10,000 lux), right kind, for the right amount of time, at the right time of day. Hard to tell online which light boxes fit the bill, and they run between 100-400 dollars-- not a trivial amount of money. Has anyone tried it? I know that I've always been very sensitive to lighting. I can't stand living and working anywhere that doesn't have big, open, sunny windows, and the first thing I have to do in the morning is open all the shades and curtains. Otherwise I feel like I'm in a cave. Since I started seeing a psych, I'll ask him. As you can tell, I'm eager to pursue the non-drug option, whenever possible.

Thanks for your replies and thoughts. I'm going to call tomorrow just to report the nausea and dizziness. i think the hope was that the intermittent dosing (half the cycle) would limit my exposure and give me fewer side effects in the long run. But I'll have to ask if he expects me to have to have side effects every time I start up and end-- presumably not, or this wouldn't be an approved treatment for pms...but then since when have I ever been normal... it is amazing that such a small dose (a quarter of the "normal") would affect me so profoundly.

My pms has been getting impressively bad. POTSwise I'd gotten to the point when it wasn't so bad until the week before my period. And I've been getting all the lovely moods, hot flashes, nausea, headaches, increased joint pain/laxity, etc. It was explained to me that many pms symptoms come from estrogen-withdrawal, and that because estrogen and serotonin are connected, that's what brings pmsers down. I have so many different symptoms, I don't know what's causing what. and it's hard to see how docs are connecting "mental" from "physical" symptoms. My "physical" pms symptoms are 75% of the problem. Anyway, I saw a psychiatist who suggested I try lexapro for two weeks of the month--mid-cycle till my period starts. I guess it's officially been approved to use prozac this way, and he says it's the same principle with all the ssris. I asked him about the issue of stopping and starting every two weeks, and he says that for pms, not a problem. And given my sensitivity to drugs, I'm starting with 2.5 mgs (not 10). Well, I've taken it for the last two nights. I've felt AWFUL, but I don't know how much of that is my pms and how much is the lexapro. Intense nausea and dizziness (more vertigo than faint). If it is the lexapro, I don't see how I'd get past those side effects, if I"m always starting and stopping every month. And frankly, if it is the lexapro, I don't see how this is an improvement--- again, as I'll be on and off and on... My question is then--have any of you done this kind of intermittent dosing? did it help? how did you ever get used to side effects like this? And do my symptoms sound like my worsening pms (in which case he may want to up the lex) or a side effect? And part of me is skeptical that serotonin will improve enough of my pms symptoms to be worth it... I hate taking drugs....

This morning was very fainty-- wasn't sure I'd make it, as I started feeling sweaty nauseaous and faint while looking in my closet. But once I put on my stockings I felt 60% better-- well enough that I haven't really had to fear passing out in front of my students. I hate them and love them-- I've been able to avoid meds with them. I think I can see the stretchy veins in my legs-- without my stockings, don't know if they're actually full-blown varicose, but they protrude a bit, and I can tell they like to be compressed.

A number of people here (myself included) report having hemiplegic migraines that can look like a stroke, but recover fully. Maybe try a search on that? Michele

diphenhydramine (what we call benadryl) is otc here. Cetirizine (sp?) is known as zyrtec, and is available by rx. I haven't heard of the other, whch doesn't in itself mean anything. Could it be the same as claritin, which is otc? Claritin doesn't work for me. Maybe just a 10% imporvement in allergies? I use zyrtec, allegra (fexofenadine?),and singulair.

oops- I misunderstood. on your face, not your butt! you may not want to put steroid cream on your face, then, as it can thin out skin. I remember during a bad spell when my whole face and eyes were seriously red, itchy, hivey, and swollen (time spent at a catowner's house, sleeping on dander coated pillows), I took cold packs and frozen washcloths and held them to my face. Between that and lots of benadryl, it helped. The colder the better.

I'm also a very allergic person. Can you put some steroid cream on, either otc or prescription? though one doesn't want to overuse, I find it helps quite well. and yes, keeping the area cool and dry (easier said than done), with minimal pressure. When you have to sit, could you sit on a cold-pack? I take allegra, zyrtec, singulair. And I can add benadryl as needed. I avoid all perfumes, dyes, fragrances, etc.

I can't lie on my side for any length of time because of hip pain. I sleep on my back with pillows under my legs to relieve back pain. I vary the number of pillows and their placement. Righ now, I usually have two thick pillows under my thighs and a feather pillow under my feet. My hip pain is from eds laxity-- my hips dislocate. My back is from bad discs. Whenever I try to sleep on my side, I regret it afterwards. I know some people with hip pain find relief sleeping in a recliner, as it keeps them from rolling over on to their side-- though that would mean sleeping unaccompanied.

I guess my reluctance to take ssris is that I always have such a hard time with side effects-- and so far sam-e has few to none for me. My sister has been on ssri's for years, and describes a wretched time getting on and off, as well as the fact that she has gained over 50 pounds. During my adolescence I was put on tricyclic antidepressants (all that was available at the time), and was either allergic or had awful side effects. I know ssris have fewer, but am really on the fence.

I had to take dilaudid, a heavy-duty opiate, before a painful set of injections. Oddly, it brought my bp up to 135/85. But I felt pretty bad on it. And yes prednisone can make my symptoms better, but it's a dangerous drug. I was on it for bad allergic reactions last summer. It made me pretty nutty-- couldn't concentrate, agitated, etc. Terrible acne, swelling, weird blood sugar. And coming off it was a pots nightmare. It's now 6 months since I stopped and I'm only now over it. Granted I was on a high dose (60mgs) for 6 wks, but will do anything to stay away from it.

That's wonderful, Nina!!!! Congratulations!!! Michele

I believe its full name is S-Adenosyl-L-Methionine. I started taking it again just under a week ago. My mood is a little perkier. Can't tell if it's affecting autonomic stuff. I do feel a little bit more hyper. The ultimate test will be how I survive another round of pms. From what I understand, it's sold as a prescription in Germany and Italy for depression, arthritis, and liver problems. In the US there may be problems with standardization. The little bit I've read says that there are few reports of side effects, but there is the potential for conversion to homocysteine, which is bad for heart disease. Just curious if anyone has any experiences with it...

Between my ongoing joint pain and some struggles with mood, I've been considering taking something. I've taken sam-e in the past and noticed it helped with both. it's an over-the-counter supplement, with European research supporting it for joint pain and depression. Before I became symptomatic with pots/ncs, I tolerated it well. Has anyone else taken it? did it help? aggravate anything? interact with anything else?

My symptoms are milder than some. My biggest impediment is eds-joint instability-- between pots and eds, I just don't stand well. I change positions all day long. My job is pretty flexible-- teaching and research at a university. I have a reclined in my office that I read, grade, and meet students in. I teach from a seated position.

I would be upset by how adamant he was. I have a wheelchair and scooter that I use intermittently- more for joints than for pots. My primary was concerned when I requested an rx, but I explained that it lets me do a lot more and be involved. Otherwise, I'm always stuck at home. and sometimes we bring the chair just in case, and I end up pushing it while I walk. It's not like it's addictive! Having it gives you options-- it doesn't mean you'll lose the will to walk. I know that there are many factors in picking and keeping a doctor, but I dislike rigidity intensely.

I get bad headaches that sound like that. Maybe it's different, but the muscles in my neck and shoulders go into spasm, they pinch nerves and give me awful headaches-- where I don't want anything touching my head and don't want to move. I still get them, but two things have helped. One is massaging the muscles in your upper traps--esp right where your neck and shoulder meet. I also sleep with a soft neck brace that stops my head from lolling to the side and pinching the nerves. Sometimes I drape an icepack on my neck. But maybe what you have is different? I know edsers often get bad muscle spasms that cause otehr problems, as the muscles try to stabilize joints counterproductively. and sometimes I have to take a painkiller.

I had a strange reaction to it, with weird uncontrolled jerking. It went away when I stopped.

Hi, I've been getting these spells where I am suddenly very hot. They are worse before and during my period. I am wondering if this is perimenopausal hot flashes from low estrogen and/or pots. I am 40. They are really unpleasant!!! My mother didn't hit menopause till 50. Michele

Flop, Can I ask what it is about local anaesthetic that is bad for pots? I'm supposed to have a bunch of injections next week, and I usually get a lot of local first... Michele

I was diagnosed officially by Mark Lavallee, who is in sports medicine. A physiatrist first suggested it, as I kept coming in for one unstable joint after another. And a couple of other physiatrists raised the question of hypermobility. the genetcisit agreed I had "significant hypermobility" and "skin hyperextensibility," but took a while to really decide it was eds, sice i'm not as extreme as many. but she couldn't find anything else that fit the symptoms, so agrees now.

i highly recommend the www.ednf.org website for clarifying. There are different types of eds--there is something called vascular eds, which is different from having vascular issues with other (more common) types of eds. Vascular eds is the one of the rare forms that they have a test for, and the most dangerous. While the risk for aortic dilation and dissection is much higher for vascular eds, it is still somewhat of an an issue for the other types. Dr. LavaLlee, an eds specialist, recommends all eds folks have regular screenings of their aorta for any enlargement.