mkoven

I also like mediven and juzo, in terms of brands. I can't really say which would be less irritating. You could try calling the people at brightlife, a company that sells a bunch of brands, explain your dilemma, and ask their advice. They've always been really eager to help when I've called. When it's hot, I wear the knee-high, but the elastic and tightness really irritates my skin even without the silicone band, and I can't do it multiple days in a row. I get raised welts that I think are mainly from pressure/rubbing. (add knee brace on top!). And then I go back to the waist-high, that are hot and annoying for other reasons. But I do feel generally less woozy with stockings, than without.

I'm allergic to a lot of things and have sometimes reacted as you describe. I also have dermatographism--meaning I get hives from simple pressure and friction. I find the thigh-highs hard to manage. Jobst does make some without the top silicon part, but then you would need a garter belt. I also wear knee braces, so sometimes I fold the top pver the top of the braces. If your skin is irritated, you probably have to come up with another plan, at least until the irritation heals.

I just get presyncope, but haven't actually fainted. But I use a scooter at work for going distances because of my joints. It's electric. I paid for it out of pocket, and was told that my insurance would never pay, as I'm not in bad enough shape. We figured it was an investment that would allow me to keep my job---which is ultimately worth a lot more than the price of the scooter. When I've been out of town, I've been able to rent scooters for brief periods, so as not to have to transport mine. I could never push myself in a manual chair. With my eds shoulder, wrists, elbows, I'd be in trouble fast. I remember you said there was suspicion that you might have eds-- could that explain the dislocation and ease of getting joints back in place, with minimal visible damage?

Thanks, you guys, for being so supportive. Not sure what the next step is that I'll take. I first have to get over being mad and upset, and then come up with a constructive plan. I feel like doctors don't want to work with me because I'm complicated-- with all my allergies, reactions, eds, pots, etc. An allergist I saw in chicago actually said that. She added that the fact that I'm an academic doesn't help, as I ask a lot of questions. Not in a grilling or overbearing way, I don't think. I'd really like to feel that I can just talk to the doctor about my options, even if they are finite and not perfect. Even if I'm not an easy fix, don't give up on me! I don't have the option of giving up, but they do...(that allergist was ultimately helpful, btw. just not for headaches.)

He was consulted and the nurse said she was just conveying his message. Of course, it would be better to hear from him. But this hospital has a policy about doctors not calling patients directly. And I've been told there are no appointments available till DEcember and he doesn't want me to come in.

thanks, you guys. I'm not sure what to do. I need someone who will work with me and not just run in the opposite direction because of my problems with medications. I feel like I've been dumped and left no recourse. He is the headache specialist at the main clinic in this not-very-large town. So am I just supposed to writhe in pain not sleep, and call in sick when I get a migraine, because the neurologist in my one-horse-town won't work with me???

So I'm still in the middle of a bad migraine, complete with neurological symptoms of numbness and clumsiness on one side. I talked to the neurologist's office, and since my reaction to fioricet, in addition to all my other allergies/adverse reactions, they aren't interested in seeing me/helping me come up with a plan. So there is no plan, and I'm left with nothing, and told not to come in. So what the !@#$ am I supposed to do when I get a migraine, if the doctor refuses to work with me? And the problem is that he is the headache specialist in town, and this is not a big town with many options. I feel abandoned.

Thanks, Tessa and Nina. I left a message for the neurologist. We'll see what he suggests. I am in the middle of another migraine right now, and really do need to figure out something I can take. My darvocet really doesn't touch it. And the idea of going to work with this headache is not pleasant. The fioricet stopped the headache, so it's a bummer I can't take it.

Hi, My neurologist prescribed fioricet for migraines after I reacted badly to midrin. I took it for the second time tonight, and within 90 minutes, swollen throat and itchy everywhere. And this is a drug that they tell you not to take antihistamines with, cause the barbiturate is already so sedating. And boy was I loopy. So I called patient advisory, and oh joy, ended up in the er again. Where they gave me the same benadryl I can take at home. No more fioricet-- too bad, 'cause it helped the headache. I've had it with my ever-growing list of drug reactions and my ongoing need for medications! I wonder what he'll recommend next, since I seem to be the queen of adverse drug reactions.

I take darvocet a couple times a week for joint pain. I haven't noticed any reaction other than being a little sleepy. I try to avoid taking more than 1-2 doses in a day, or it messes up my stomach. I take it when I can't get my hip to stay fully in socket at night, but want to sleep. But otherwise, no real autonomic reactions. I have heard that it can cause seizures at high doses, and one has to be careful of getting too much tylenol.

I don't know if this would help hemiplegic migraines, as I get those less often than migraines with head pain, but I did start taking magnesium 600mgs and riboflavin 200 mgs several weeks ago, actually upon the suggestion of doctorguest on this list. I've had a couple minor headaches, but so far nothing like my fullblown migraines since taking it. It's still too soon to tell cause and effect, though. Maybe that would help hemiplegic migraines to???? I asked my neurologist, who seemed open, though not terribly convinced.

Dear Patti, I've had strange neurological symptoms, chalked up to migraines. You may want to do a search on hemiplegic migraines, as several people here have had those. They are creepy. Michele

Four years ago when I was having other problems, I couldn't get an appointment at mayo. BUT, you always have the option of going as a walk-in. I believe I had to wait maybe 2-3 days before seeing someone in internal medicine, who then arranged for me to see the appropriate specialists. The whole thing took about ten days. It was winter, so wait times in Minnesota are shorter. There were things I liked about Mayo and things I didn't. It was a well run system and the doctors spent a lot of time with me. This was before my eds or autonomic issues emerged as culprits-- and no one picked up on them. The really good thing that came out of it was their recommendation of a chronic pain management program for terrible back and neck pain. The bad thing was that they ended up attributing some of my unexplained symptoms to "stress"--intermittent one-sided weakness and numbness, strange blurred vision. (Even at Mayo, the "hysterical female" diagnosis reared its ugly head. Grrrrr.) With hindsight, I think I was having eds and hemiplegic migraine symptoms. Since both of those are unusual and are often diagnoses of exclusion, they never considered them. But I do admit that I'm not in a big hurry to go back there, with the "crazy until proven sick" approach that I ended up with. I don't know that doctors always realize the damage that gets done when telling patients it's "in their heads." Why not just say that they can't yet find a cause through conventional testing, so some things can't yet be explained, but that nothing clearly physiologically dangerous appears to be going on? I totally buy that being stressed can make things worse and harder to manage, but every time I've been given a psychological diagnosis for a physical symptom, we eventually found a physiological cause. and every time, I felt somewhat scarred from having to have the "headcase" label affixed. Does anyone know how frequently psychological stuff really manifests physically? Often enough to warrant all the two-bit (sorry) shrinky diagnoses so many of us have had thrown our way? It always seems like a last ditch, desperate effort, that does long-term damage. Don't get me wrong--I'm a big believer in psychotherapy--but even my therapist at the time thought the "stress" diagnosis was bogus. Anyway-- I just totally went off on a tangent. The upshot is that there are other ways of getting to Mayo.

Really glad to hear it went well. I know what you mean about getting nervous. I still do it--I just get so wound up with hope, anticipation, and fear of disappointment. I hope the continued testing brings some new answers and strategies.

My allergies are actually the reason I've never been on a beta-blocker. My allergist is afraid they would make my allergies worse and make an epi-pen less effective in an emergency.

I seem to have eds, but have only had autonomic stuff really noticeably in the past year (I'm 40), though in retrospect, I had subtler stuff younger. Changing hormones seem to be bringing out all sorts of stuff (:

There's been a lot of discussion on the board about hypermobility, as it seems many pots people also have ehlers-danlos syndrome. You could search that too. At any rate, regardless of the official diagnosis, there are guidelines for managing hypermobile joints and treating them--If you go to www.ednf.org, there's info on physical therapy. Loose-jointed folks need small, controlled ranges of motion, NOT stretching. You might ask to meet with a physical therapist and have them look at the stability of your joints throughout. I only really started having trouble at 35 (I'm almost 41). Ergonomics are key, as is keeping joints in their mid-range, not end-range. (Just because I can stick my foot in my mouth, doesn't make it a good idea!!!!) Good luck.

I saw a neuro yesterday for my migraines. I liked him, though not sure how up he is on pots/ncs. Given all my weird drug reactions, he is now prescribing fioricet and trigger point injections for my neck and shoulders. I've also started taking magnesium and riboflavin. the test will come as I'm headed deep into premenstrual land...

It's not clear that I have asthma, but I am severely allergic in general, and singulair is often prescribed for allergies, even without asthma. I can't tell you how much it works, as I also take allegra. It's supposed to block leukotrienes (sp?), so it works a little differently from antihistamines. But I can't tell you what that means!!!

Hi Nina, How sucky! Hope yer feeling better. And what on earth does "diseased neck" mean????? Michele

Hi, My father lives in France and I've spent a lot of time there over the years. I don't know that folks in the US necessarily have an easy time getting diagnosed and treated either... But it does sound like you need a proper diagnosis. It was an electrophysiologist who diagnosed me, based on my symptoms. I feel unwell after: standing, prolonged sitting, going to the bathroom, after intense exertion, around my period. My joints are too unstable to stand up for as long as needed for a tilt table test. At least for me, once I understood the syndrome and my triggers and had dangerous stuff ruled out, I felt a lot calmer. Don't get me wrong-- I HATE feeling like I'm gonna pass out and all the weird sensations I get when my bp gets wacky. But the triggers are consistent. Could you try compression stockings to see if they help? Besides being hard to put on/take off, they're pretty free of side effects and I feel much better. That would at least bee an interesting empirical experiment. If they help, that tells you something useful. There's a lot of info here on what kind to get, but most agree 30-40 is most effective. Hope you get some answers.

thanks for your ideas-- bloodwork for pancreas was normal. Gallbladder tests have been normal. Of course, normal is good-- but I feel really gross. I had a tiny tiny bite of cheese cake yesterday at someones' birthday, and felt nauseated and awful for the whole day after...

I get a little reflux premenstrually, but not too bad. This doesn't really feel acidic...

Hi everyone, Since late July, I've had ongoing nausea and gas. It's really bad in the morning after I eat-- no matter what I eat. And then it's tolerable if I eat absolutely NO fat. As soon as I have any fat, I feel really nauseated and gassy. I'm not pregnant. My hida scan and ultrasound of my gallbladder were normal. All bloodwork is normal. Eight months ago I had a normal upper gi endoscopy--before the current symptoms started. I've had intermittent gastroparesis in the past, but this feels different. I am able to eat and digest fiber-- just nothing oily/greasy. I see my doc (pcp) again on Wednesday. Ir eally don't want him to conclude it's psychological, just because he doesn't have an answer. I feel like docs love slapping the hysterical female tag on me if the answer isn't immediately forthcoming. the symptoms are ongoing, but very specific. I suppose if I get used to wanting to throw up breakfast and then resign myself to a completely fat-free diet ( means no meat, fish, no oils, even olive oil, nuts, etc--- really hard if you don't make prepare all your own food.), I could deal. But I'm quite miserable every morning with this. Every time I try a little fat, I predictably feel really gross, gassy, and have to struggle not to throw up. Can those gallbladder tests be wrong? What else might cause these symptoms? BTW, I also have eds.

Thanks for your support and ideas. Doctorguest- I think the doctor figured I was reacting to the vasoconstrictive part of midrin, and that the triptans would cause me to vasoconstrict even more??? And something about how people with a history of hemiplegic migraines should avoid triptans-- even though this headache wasn't hemiplegic. No weakness--just head and neck pain through the roof with intermittent tingling/numbness of one side of scalp and face. I'm still feeling pretty desperate-- this is my fourth migraine in two and a half weeks. And now I'm past my period, so can't blame that this time, though usually that's my main trigger.