mkoven

that's interesting. I also have weird reactions--allergic and otherwise to meds. it's gotten worse and more frequent with time.

Yeah, not sure what's going on. I had the same reaction last night to totally different food--chicken. I hope I'm not going back to this weird thing I had a year ago where the act of eating itself would trigger allergic symptoms. Both times in the last two days it was in the late evening. We never did get to the bottom of my year-ago weirdness. For several months I would get itchy everywhere, my throat would tighten after eating, and I would feel faint. I ended up on prednisone, and then huge amounts of antihistamines. It settled down after a couple months, but no good answer. Yes, I am allergic to alot of things, but this seemed to be just some strange generic mast-cell trigger thing. the allergists didn't know what to do with me, other than steroids and antihistamines.

Yes, I hope I'm not allergic to chocolate...but something weird is up.

Over the summer I was worried that I was getting "dumber," and felt like my memory was sliding. I'm a lot older than you-40. (I'm on an academic calendar, and even if I work in the summer, work is definitely slower). Anyway, once the semester started, and I had to learn student names and be able to think on my feet in the classroom (metaphorically! I actually sit to teach), it's improved. I'm with the "use-it-or-lose-it" principle. I treat it as a challenging game to learn the names of all the students in my class quickly, since they are used to being in anonymous big lectures.

Hi Tearose,

Thanks for understanding my reaction ): It must have been the chocolate, as I made it with milk (which I have all the time), sugar, and unsweetened cocoa powder. Cocoa powder is the only thing there I don't have all the time.

Oh well. Maybe when my body settles down I can try again--with benadryl on hand. I guess there will be no danger now of my polishing off the Halloween candy.

Around the time my ncs became more frequent, I also started kicking up the frequency of allergic reactions to drugs and food. Last night I made some hot cocoa, and within minutes I got itchy and my throat started tightening. I took 2 benadryl and it settled down. Sigh. Allergic to chocolate? How cruel is that! Every year the list of foods I'm allergic to lengthens. Sometimes I can try something again months later, and it's okay. Anyway, I'm just whining. There are more serious afflictions. But being allergic to celery just doesn't feel as sad as a chocolate allergy.

i am (of course!) allergic to ultram, but was initially given it after back surgery. it's supposed to be non-addictive, but I've heard of people going through nasty withdrawal when stopping.

Neuropathic pain and opiates...when I've had killer sciatica, esp. before back surgery, opiates took the edge off at high doses, but there are probably better options. I know they helped some, because when they would wear off, the pain was searing. being in a huge amount of uncontrolled pain isn't good for anyone's mood. but I never noticed that the drugs themselves improved my mood, except indirectly by reducing misery and allowing sleep.

I'm towards the end of the vulnerable stretch--day 4 of my period. so far, if I take ibuprofen right at the very first inkling of a migraine, I've been okay. This has been every day, though for the past five days. I don't know if this is a good long term solution, or if it will work over the long haul. I guess it's good to know I tolerate ibuprofen, with all my other drug reactions. I do know that if I take nsaids too regularly, they bother my stomach.

I see my pcp in early December. I still don't have a new neurologist. If I tolerate the ibuprofen, I'd prefer that to taking a preventive.

Hi Flop,

I have heard that ssris, and the one you are taking in particular, can cause weight gain for some. I think wellbutrin is supposed to be more "weight-neutral." Not sure what it does for pots, tho.

Hi,

Actually, midrin sent me to the ER with my heart racing and chest super tight. I guess we all react differently. Fingers crossed ibuprofen will keep my hormonal headaches at bay, if I take it before they get going. I've been careful to take it with food and with pepcid, to keep my stomach happy.

Since I've been complaining so much recently about my migraines, thought I'd share some signs of improvement. I still haven't found a new local neurologist.

BUT, I've been taking ibuprofen 200-400mgs a couple times a day prophylactically since my killer migraine Wednesday night, knowing I was headed into serious hormonal territory. I'd been nervous about this given my recent bad reaction to naproxen, but I do seem to tolerate ibuprofen at this point. I've felt the beginnings of a migraine on and off since Thursday evening, but with the ibuprofen nothing has erupted into a fullblown attack. Today is the first day of my period--usually a guarantee of a migraine. I took 400 before I went to bed and 400 this morning, and so far just a faint/dull preheadache feel. Hope I continue to tolerate the ibuprofen and can stop by tomorrow. And of course, that I can keep any actual migraines at bay.

Hi,

A doctor very reluctantly prescribed triptans for me, because I've reacted so badly to so many meds , and because I believe they are contraindicated with hemiplegic migraines. I haven't tried it yet. I'm always afraid to try a new drug for the first time, esp after business hours. I've ended up in the er multiple times this way...

I wasn't thrilled about taking the dilaudid, but I know I tolerate it okay, and wouldn't end up in the er. (The neurologist had actually offered me vicodin, but I'm allergic. ) I'm not someone who would ever take painkillers, if not in pain, so I'm not concerned about getting hooked. I've had this nearly full bottle since march.

But yes, it would be good to have a dedicated migraine doctor and migraine plan. My last neurologist dumped me for being too complicated, and this is a small town without a lot of neurologists. So I'm looking.

It was a long and unpleasant night, but I finally got some sleep, and the headache has pretty much subsided--with a combo of ibuprofen, dilaudid, and some sleep. I'm feeling a little traumatized by the whole thing. These premenstrual and menstrual headaches are really brutal and frightening. Thanks to Nina and Doctorguest for your support and input.

Thanks, you guys. When this first happened a year ago, the examining docs did find I was slightly weaker on one side. It feels like clumsiness/loss of fine motor control. that part has subsided, but comes and goes, as does the dizziness. It is somewaht subtle, though. I'm not actually paralyzed.

I just took an ibuprofen. Not sure how I'll react given my recent reaction to naproxen, but I figured it was worth a try.

I also have some leftover dilaudid that I never take (prescribed to premedicate before a painful procedure), but I may try it tonight to see if I can get some sleep. My memory of dilaudid is that it packs a power ful punch, but is very short-acting. Maybe it will be enough to fall asleep. I hope I don't wake up with this thing. I have a full day at work tomorrow.

This is getting really old. I was hoping the trigger point injections would help, but I guess hormones take the day. I don't normally fantasize about menopause, but today I do.

So here I am again with a migraine. this one is clearly hormonal, as I'm 3 days b4 my period. I'd started trigger point injections that seem to help limit migraines at other times of the month, but my shot doctor thought that premenstrual migraines would not be eliminated with those injections. and here I am.

so here's the deal. You may remember that I was essentially fired by my neurologist last month. So I don't know who to check in with. I would just tough it out today, if it were just pain. But this migraine seems to have vertigo, numbness, and right-sided clumsiness associated with it. I've previously been told that some of my migraines are hemiplegic, and over a year ago had a full workup--cat scan, mri, mra, with no sign of stroke/tia. And this feels like ones I've had before. But I don't really know what to do when I have one of these scary migraines--just ride it out? It seems I don't really have anyone following my case right now, so I don't even know who to call? I don't want to go to the er, because I'm not even sure what they would/could do for me.

Anyone know if untreated hemiplegic migraines are dangerous? And how to treat them, if I'm not supposed to use triptans? Just cancel everything and turn out the lights???

I'm an academic, which means teaching and research. Teaching is six hours a week of classroom time, which I manage by alternating positions. I warn my students from the start that I move from sitting, standing, to sprawling across the desk. Most of the rest of the time is in front of the computer upright writing/research, or reading/grading/meeting with students in my recliner. The job is flexible. I need to cover my classes at specific times, but the rest of the work I can do when/where I please, as long as it gets done. There are faculty meetings, but my colleagues know about my issues and are tolerant of my strange position changes. My joint problems from eds are currently much more disruptive than pots. But I still need a lot of flexibility in hours and position, or I pay the consequences.

My health was pretty good through grad school which I finished in 99, and I abused my body-- sitting badly for too long, carrying too many books, etc.

But I have no regrets.

I've never been able to tolerate the pill. I tried one in my early 20s( don't remember which one), and then ten years ago, tried alesse, a low-dose one supposedly. It made me moodier, nauseated, and made my periods worse!!!

But now, at age 40, my premenstrual phase is making me nuts--literally and figuratively. From the time I ovulate until the end of my cycle, I feel progressively worse, in terms of aches and pains, joint laxity, pots symptoms, migraines, gastro stuff, and mood. My new gyne thought yaz (which I think is a little different from yasmin) might be worth a try, as it's a different formulation from what I tried back in the day. I'm somewhat reluctant, esp with migraines, past pill experience, and varicose veins (one previous superficial clot), family hitory of breast cancer, but I am becoming desperate. It's hard to read online reviews-- those who feel moved to write are either thrilled or have terrible experiences. My actual period is only really bad on the first day--it's the leadup which is killing me.

I think I'll give it a try, though.n

I hope yasmin works for you. Keep us posted.

People with eds bruise more easily, because of the fragility of the tissue.

I'm sensitive to medications in general-- either developing strange adverse reactions or allergic reactions, or needing a very tiny dose. Is there documentation that pots patients are more sensitive to meds? If so, what would the mechanism be? I'd love to have an explanation to tell my gunshy doctors. I feel like the princess and the pea. I've always been a little like this, but it's gotten truly ridiculous in the past five years.

Hi Nina,

Definitely get it checked out. Francomano published something saying some edsers also get Rheumatoid arthritis more frequently than chance would predict.

The gout theory is interesting, though I think unusual for young women. When I was on super-high doses of nsaids after back surgery, my big toe swelled, turned red and was very painful. Never confirmed. It subsided and never happened again. My dad has gout and is on meds to prevent it.

This is really interesting. The same thing has happened to me. I've always been a very allergic person, but it's gotten a lot worse since pots/ncs flared up. My allergy to adhesives (including most ekg pads) is also a real problem, where they've sent me home in the middle of an echocardiogram, as my throat started tightening from the allergy. I went through several months last year when I could eat only chicken and rice without becoming allergic. It's calmed down, but I'm still allergic to lots of things.

On the other hand, there are plenty of allergic people out there who don't have pots. But it does seem a lot of pots people have allergies.

One other thought-- are you on beta-blockers? I've heard that those can worsen allergic response.

I make sure I take capsules, not tablets, as they are more easily digested. I take twinlab supplements, as they are hypoallergenic.

I've just had one of those "is it anxiety or pots moments." Here I am sitting at the computer, suddenly feeling anxious and like I might swoon, and feeling hot. No particular trigger. And I check my pulse, and it's on the high side for someone just staring at a computer screen (90, normal for me upper 60s, lower 70s when not potsy). Not fun.

Michele

I was diagnosed with migraine after stroke was ruled out. I think I'd had episodes before, but there was never an explanation, and the "stress" diagnosis was handed out. Not that anyone wants migraines, and to some extent, it seems they are a diagnosis of exclusion after more dangerous things are ruled out, they are not nothing. and the stress diagnosis never satisfied me.

Come to think of it, some of my first weird symptoms were when I was weaning off neurontin--again, strange one-sided weakness/numbness/clumsiness. I wonder if returning me to a non-neurontin state made my brain a little too excitable, hence the non-head-pain migraines.

I have strange neurological symptoms that sometimes co-occur with a headache and sometimes not-- and they've been diagnosed as migraine. I usually get one-sided weakness/clumsiness, sometimes vertigo.

Hi Nina,

Sorry to hear about the diagnostic chaos and all the pain. Do you still have plans to see Francomano? EDNF folks rave about her, and she's a national specialist in connective tissue disorders in general, so wouldn't fixate on eds, if that doesn't work. I really would like to see her too, but it's hard to coordinate her availability with when I'll be in the area.

I wish I had something useful to say about pain meds. I'm really sorry about all that's going on and that there are some new strategies that emerge with minimal side effects.

Thinking of you,

Michele