mkoven

Hi, I've been having more frequent and painful headaches of late. I've also been diagnosed as sometimes having hemiplegic migraines. Because of my drug sensitivities, I've resisted trying new things, but today I couldn't stand it anymore. I had a prescription of midrin that I'd never taken, and was desperate, so I took it. Well, within 40 minutes, my heart was beating out of my chest, super tight, etc. I called the doc's office. They wanted me to go to the ER. 4 hours later, I'm at home. My cardiac workup was fine. But obviously no more midrin. And the er doc through triptans would be even worse. I have scheduled a visit with a neurologist in a couple weeks. Not sure what he;ll suggest if tripans and midrin are off the table. I've had bad reactions to tricyclics and neurontin, and can't take beta-blockers because of allergies/asthma. Oy. I hate going to the ER. And I still have the &*%$#! headache.

My white matter has several "small white hyperintensities." The neurologist says they look like the marks of migraines. My mra showed a congenitally small right vertebral artery and several small "infundibula"-- apparently these aren't aneurysms, but slight dilations.

I would probably get it checked out. Does your position affect it? I have burning in my feet from bulging disks and it gets bad when I sit too long, or do much bending/twisting.

I have to lie flat because of my back-- not pots. We rent a minivan, take out or collapse the back seats, and I then lie on a camping mat, with pillows to prop up my legs. It's not entirely safe, as I'm not secured or belted in, but it's allowed us to drive MUCH further. I can also do this in some SUVs, but then need a step-stool to climb up.

I would definitely bring it up with her--esp. if you feel like she has otherwise been helpful. Can you bring her some literature that explains the difference between pots and anxiety--like it's positional nature? Standing up is not usually an anxiety-producing activity for most.

thanks, everyone, for your kind words! The price is absurd, but unfortunately I have no control over that. The press sets the price. I think one could have a library order it or get it through interlibrary loan. I have a pdf of the whole thing without the front matter, but not bound, of course.

After busting my rear end for the past umpteen years, despite less than great health, I'm psyched to report that the book that I wrote (required to keep my job, among other things!) is finally coming out. http://www.benjamins.com/cgi-bin/t_bookvie...okid=SiBil%2034 It's not going to make me rich or famous-- with a small circulation and a high price tag, but it still makes me happy. Thanks for letting me share. You guys have made the last 18 months of the process a lot more tolerable. Michele

Thanks, doctorguest, for your input. I really appreciate it. So ibuprofen and naproxen are different enough that you think I'd be okay? If so, I think I'll probably be better off trying one, rather than two first... (I'm not in the habit of taking nsaids, as I've been doing prolotherapy for my joints, and nsaids interrupt the whole process. That said, my prolotherapy doc said I should be okay if I take them a week or more before or after a treatment.) If I do get a prescription for an abortive migraine med, it would be great if I could be in or near a doctor's office the first time I take it, in case I have some weirdo reaction. Don't know if that's customary.

I had taken aleve before-- but pretty infrequently and usually just one pill. I do remember feeling rather woozy a couple of other times after one. It really did feel like the aleve yesterday, as it was so sudden in onset, about 40 minutes after I took it. And it wore off about five or so hours later. I really seem to have a knack for weird drug sensitivities. On the msg front, I've never made that connection before. and I did note as I was eating the soup how tangy/salty/tasty it was--though it came from a real "hole-in-the-wall" restaurant. My other big triggers seem to be premenstrual and skipping my morning coffee. It's strange, because there definitely feels like there's a neck component to my headaches, so one doctor told me that they weren't migraines, as my neck and shoulder muscles are impressively tight. But the fact that my headaches come with nausea, can be super-intense, are one-sided, worsened by movement, made another doc say migraine. and another said they could be both. I don't get auras and am only a little sensitive to sound, not light. the other feature is that lying down makes them MUCH worse, as it puts too much pressure on my neck and head. I have to sit in my recliner, partially reclined, with a cervical collar on. the weird thing is that I never got headaches until a couple years ago. It feels like part of this overall weird transformation in my formerly healthy, stable body. At any rate, I think I need to have a serious conversation with one of my docs about headache meds. I don't feel comfortable with taking any more aleve--plus it didn't even do much for the headache.

I was woken up early this morning by a terrible migraine-- triggered, I'm guessing by hormones and a huge dose of msg in some Vietnamese soup I ate last night. I've never made the msg connection before, but that's the only thing I can think of to have triggered a headache THIS BAD. Anyway, I took 2 aleve, and 4o minutes later felt very faint, tired, sleepy etc. My heart rate is suddenly lower than normal-- upper 40s, low 50s. It feels like it's really pushed the pots/ncs into overdrive. Anyone else have this? Unfortunately, aleve is one of those longer-acting drugs, so I may have to put up with this till tonight. And it didn't even get rid of my headache. should I be concerned about these side effects and call a doc (which on the weekend means er), or just make sure they get no worse and wait for them to wear off? i'd rather do the latter.

I'm trying to cut back on the huge doses of antihistamines I take, without letting my allergies worsen. I had been taking allegra 180, zyrtec 10, singulair 10, and benadryl 25-50 prn. After two days of not taking the zyrtec, my resting heart rate (seated), has gone from 77 to 58. I notice the allegra wearing off by the time of the next dose, but so far not too bad. (At one point I was taking DOUBLE those amounts--under a doctor's supervision, for terrible allergies that had required prednisone. My doctor thought that allegra was less likely to raise my heart rate than the zyrtec...If I do need more than 180 allegra, I'll ask about my doc about doubling the allegra, rather than adding the zyrtec to the allegra.)

Doctorguest--I wanted to ask what you mean by anticholinergics being bad for the brain. I've also been having some memory issues that are new-- remembering names, concentrating. I assumed they were hormonal, but maybe not-- haven't yet talked to a doc. But I am on a lot of antihistamines and have been for a year-- zyrtec 10mgs, allegra 180 mgs, both dailys, and benadryl 25-50 prn (usually about 3 times a week). Could those antihistamines at those doses be the smoking gun??? Are zyrtec/allegra less likely to cause problems because they are nonsedating (in principle)?

Thanks for the info, Nina. How does he have you stretch without destabilizing? For me, that's one of the trickiest things. My muscles are so knotted up, but stretching pops my joints. My pecs are sooooo tight, but when I do the standard stretch ( arms in doorway), my shoulders sublux

Hi Nina, I'd love to hear more about how he's stabilizing your spine-- which types of exercises and muscles. (My pelvis and lumbar spine are not good, and I'm always looking for new ideas. I've had multiple runs of pt, but am still sloppy and poppy--with feet that go numb when I sit too long and bulges from L3 on down,and seriously loose si and pubic joints.) I get the impression that the transverse abdominis (deep abdominals), gluteus medius (side of butt), and multifidus (muscles stabilizing vertebrae) are the trendy muscles for these problems. I do my exercises and they probably help, or I'd be much worse, but I'm not winning any awards here for pt success stories of the month.

I've noticed that I have terrible gas discomfort more and more that seems triggered by hormone levels. Anyone else have this? I'm wondering if this warrants a doctor visit. My worst fear is that it could be ovarian...

If you are hypermobile, and have pots, it would make sense to try to get a diagnosis to rule out eds. (There are plenty of tall, thin people who are not flexible). Seeing a doctor to figure out or eliminate causes of the pain would be good, as the treatments differ. At the very least, hypermobile joints are more vulnerable than "normal" joints. I've worked with physical therapists to find a routine that strengthens without stressing. It's important to find someone who does not focus on range of motion as much as control and strength.

I've decided to let myself go grey. I'm allergic to so many things, it's not worth it. I'm 40, and have one medium-sized streak in front, and then some randomly scattered throughout. (My hair is otherwise dark brown). Maybe only 5%, but noticeable. I try to tell myself I look like Susan Sontag (yeah, right!). I've become allergic to many shampoos too, so I have to use hypoallergenic shampoo and everything without fragrance. (I'm also allergic to anti-perspirant-- very embarrasing. I can wear deodorant, but still get not-subtle stains). In my experience, these reactions often get worse if you keep exposing yourself to the same allergens. Otherwise, can you try different types of dyes?

I've had repeated episodes (like now) of feeling like I don't quite control a limb. Usually after prolonged sitting or standing. I've been checked out for stroke (mri, mra, cat scan) and all are clear. When this first happened over a year ago, the neuro said "hemiplegic migraine." Could it be a low bp/ less blood to the brain from pots thing? It's creepy. It is not always the same side, but usually an arm and possibly half my face. The neuro said that if I had recurrent episodes that always clear up, it's unlikely to be anything new and dangerous. Anyone else have this and/or explanation for what's happening? Neuro didn't think of pots, but this was also before my diagnosis by an ep. And I don't think these guys have spoken. My pcp thought this sounded plausible, but he'd never heard of such an thing.

This may not be relevant for you, but it seems many folks with pots also have ehlers-danlos syndrome-- a collagen defect that affects tissues throughout th body-- and joints are the big one. Are you overly flexible/hypermobile? WWW.ednf.org has good info. All my joints are on the loose side and are easily injured. Of course, you should work with your doctor for the other more common (in the general population) causes of joint pain. But eds is underdiagnosed and doctors often look for extremes. I am not a contortionist, but still have too much movement in my joints, and they often slip out of place, clink/clank, hurt, etc. In the general population, I've heard that eds is 1 in 5000.

I've been bad recently about wearing mine, though I keep them in my bag if I start feeling bad. But I have found that the open-toe style is MUCH easier to put on, as you can use a baggy or a little satin thingy that comes with to get them on your foot. But I've also complained A LOT here about getting them on and off. My big problem is hypermobile fingers that I've injured/sprained. And my hands are happier without them. But on faint days, they do help tons.

I've had weird sensations like that with different nerve injuries. When my off-kilter kneecap was pinching something, it felt like I had water running from my inner knee to my ankle. After back surgery (L5-S1), I felt like I was either walking on glass, stepping on a rock, or being stung by a bee on the sole of my foot. Both sensations stopped when the nerve either healed or stop being pinched.

I wonder if part of the problem in "connecting the dots" is that medicine has become so subspecialized. When my problems exceed my pcp's knowledge, he sends me to a specialist, who examines causes from his/her specialty. If I raise the possibility of connection across specialties, it's not that they dismiss it, but it may no longer be their area. I am rather tired of shuttling between different types of doctors without a lot of synthesis. I've seen: genetics for eds, psych for pms, neurology for migraines and transient weakness, cardiology/ep for ncs, allergist for allergies, physiatry and sports medicine for my many musculoskeletal issues. All have had their role, but not much integration. I am overdue for gyne-- never an appointment I look forward to, but it's another "dot" to connect/not connect. I know my pcp is supposed to help pull it altogether, and I like him fine (he's always rushed/hurried and hard to get an appt. with), but it ain't happenin'.

I'm overdue for a gyne appointment and need a new gynecologist. I'll have to chat her up about all this. I'm still reeling from a killer 24 hour premenstrual migraine that's making me desperate to try almost anything!

There's a transcript of a presentation given by Terri Olson on ednf-- he's a pt who has worked with a lot of hypermobile eds people-- about how to do pt with us and how not to. I showed it to my pt and it helped to guide my treatment. I also saw him once-- he's in South Bend, Indiana. The focus is on strength, rather than stretching, slow, controlled movements in a small range of motion. Closed chain exercises are more stabilizing than open chain (meaning, for example, minisquats are better than leg lifts, because having your foot on the ground recruits all the stabilizing muscles. I don't swim, because I'm less stable under water.

there's a lot of good info on ednf.org about exercise with eds. Exercise is a double-edged sword. I do stationary bike, walk short distances, pilates, and pt. For me the key is SLOW increases-- like a minute every other day. I brace for exercise. I'm maybe more beat up than you, but I started biking for just 5 minutes at first. Also edsers often get trigger points in their muscles from trying to stabilize loose joints. They usually make things worse--creating pain on their own and pulling joints further out. I do regular trigger point work on my hips and thighs that really helps with knee, hip, and back pain. My kneecaps used to pop , slide, and grind ALL the time, and now barely at all, if I keep on top of trigger points in my lateral thigh and IT band. I use a foam roller or a set of rubber balls in a sock that I rub the muscle over until it releases.