mkoven

Oh, do I feel your pain! My neck and headaches have been driving me nuts. The two things that help me some are self massaging out the knots of muscle in my shoulders and around my shoulder blades with a theracane and sleeping with a soft cervical collar. But I still get some whopping headaches. You might want to see a doc though to see if it's "just" spasming muscles and loose joints. Apparently edsers sometimes have chiari which can cause other neurological problems. I believe this is diagnosed with mri.

Saw the doc again today, and indeed he was thinking of lamictal because it's not a ssri. Since it is still chemically different from lexapro, we're instead going to try intermittent, low-dose prozac first, and hope I don't twitch. (BTW, since I was only on the lexapro for ten days, no withdrawal when I stopped. But the nausea did diminish greatly.)

Frankly, I'm puzzled... I'm so ambivalent about introducing new meds, as I've had so many adverse reactions. I don't think I did or said anything that could lead him to a bipolar diagnosis... and i've only seen him once. i've been in individual therapy for years (with someone else who doesn't prescribe meds), and this diagnosis has ever been on the table. I get somewhat anxious, and premenstrually, the world looks somewhat dark-- but I function. I've never been manic--and am self aware enough that I think I'd know if I were. So, I'll just have to see what he says. So far I'm unimpressed with how his practice is run. His secretary simply forgot to enter my appointment, so I was sent away for two weeks. And then he doesn't return his calls-- his secretary does. For a non psych doc, I understand. But for a psych, I don't like it. He had his secretary tell me to come by and pick up the lamictal-- as if I wouldn't have questions and want to talk about it first. I'm not the kind of patient to just passively take a drug just because it's offered. I need information and to have my questions answered. I've had too many med problems. I guess I should ask him on Friday how best to communicate with him, because this going through the secretary business does not do it for me.

I took accutane in my late 20s-- before I had any serious symptoms of anything else. It's a miracle drug-- it essentially "cures" acne, but is very rough on your body. It did some permanent bone damage. Retin-A can be effective, and is much safer, because topical.

That's what I saw--not sure why he'd prescribe it for me, as i've never been diagnosed bipolar--if my mood goes anywhere, it's down, not up. And not sure how it would help pms or ncs??? Anyway, will ask what his thoughts are on Friday.

Well this morning, I started to develop a twitch in my face and limbs. I've had extrapyramidal reactions before, so called the doc. No more lexapro. I see him on Friday to discuss options. He said something about lamictal????

hi everyone, I've posted recently about my lexapro problems. i was prescribed lexapro for pms, to be taken intermittently (2wks/month). I see the doc on Friday. Here's the deal. I've had unbearable nausea since starting, and am only taking 2.5 mgs a day (a quarter the normal "low" dose). I'm now in the thick of pms, and must say, it's not doing a whole heck of a lot for my physical symptoms or my mood. And I don't think I can increase the dose at this point without being really sick. And I've been at this dose for 2 weeks. And the nausea is not improving. So I have the feeling we're going to have to bag the lexapro. Even if I stayed on it continuously (not intermittently), I just feel too crummy. So my question is-- if one ssri makes me nauseated, does that mean others probably would too? I'm very allergic (to around 30 drugs) and can't take effexor or any of the tricyclics (hives). I'm also concerned about weight gain, as I'm already heavier than I should be. What might be the next thing to try? thanks! Michele

I have intermittent numbness in different spots on my legs and feet, but we're pretty sure it's from my lumbar spine. I have a history of disc herniation, bulging, degeneration, etc. I now know which pain/numbness patterns correspond to which disc. I used to get it down my leg, back of the calf, outside toes, sole of foot. Now that that disc has dried up (L5-S1), and I now get it top of foot and big toe. Lo and behold, my worst bulge is the next level up, L4-L5. We also know I'm bulging at L3-L4-- from which I only sometimes get front of thigh, inner calf burning. I do get it in both legs, though usually not at the same time. But my bulges are central at this point-- not off to one side. My spine looks a good thirty years older than my chronological age on mri--sigh.

My bp is all over the place, but tends to run very low or low normal. Once a month I've been getting prolotherapy injections to stabilize the ligaments in my eds pelvis and hips-- which I think is helping slowly. Anyway, because the injections are so painful, and I get over fifty at once, over the course of an hour, I premedicate with a strong opiate (dilaudid) and 2mgs of ativan. I've done it without meds and it is really awful. With meds, it's bearable. I've noticed that once the meds have kicked in, but before the shots, my bp runs high. This has been true every time. YEsterday it was 145/95, pulse 95. Any reason why ativan and/or dilaudid would have a hypertensive effect? I only took that one dose before the shots. Later that night, and this morning, my bp was okay again. This morning I was 95/67.

the psychiatrist said that if lexapro didn;t work out, he might try me on cymbalta. Anyone know if that's better for not gaining weight? I had such a crummy experience with tricyclics in the 80s, before ssris, that I'm cautious and skeptical.

Thanks for all your input. My return appointment is now 4/27-- and i'll still be in the 2wk window-- so we can then discuss if I keep going, stop altogether because I can't take it, or do the intermittent dosing. Right now, though it's too early to tell probably, "we're not having fun yet." All side effects, no benefits. Yuck. I think I'll have to take tigan tonight so I can sleep without wanting to vomit. Just out of curiosity, has anyone had weight gain with lexapro or other ssri's? I'm on the chunky side already, and my sister put on weight with ssris over the years. i'm hoping if the dosage is low enough that I can avoid this...

Hi, I've started lexapro, primarily for pms. I've been SOOO nauseated and dizzy, and I'm only taking 2.5mgs. I wake up in the middle of the night wanting to throw up. Right now the side effects are so much worse than the reason I'm taking it. And I'm probably at such a low dose that it can't do too much for me. Plus, since it's for pms, i'm only to take it for 2wks at a time...so i don't know if i'd have to put up with this every month when i go on it??? I had an appointment with the doctor on Monday to discuss, but (grrrrr!!!), they hadn't entered it in the computer, so I was sent away, and won't be seen for another ten days. TOTALLY lame. Don't know that I can get thru to the doc before. Don't know if this is an incipient allergic reaction, but the left side of my face has red splotches and itches. Between wanting to vomit in the middle of the night and my regular eds middle-of-the-night pelvic dislocations, I'm not very perky or happy this morning.

Hi Tessa, In terms of the stockings, in the US you can buy them without a prescription, even as strong as 30-40 strength. I couldn't function without them. They make a huge difference for me and have the advantage of not being a drug. I know that in France you can buy them in a pharmacy, I don't know about Spain. They can be a little annoying, but at least to me it's totally worth it. There are lots of posts here about them. I wear waist-high, with open-toe so that my feet don't get too hot. The open-toe are not too bad to put on, as you can slide them on easily if you put a plastic baggy on your foot first (which you then pull off). My doc here said he always recommends stockings before trying more meds. Hope you feel better soon.

It has helped me in the past when used on an as-needed basis. I stopped it because it affected my mood-- I become rather despondent on it, something that wears off when the dose wears off. My GI said this makes sense as it suppresses dopamine. So for a while , I only took it before bed, as it would wear off my morning.

Thanks you guys for the feedback! It's a little better today. I still get frustrated by the variability in my symptoms--some days I feel almost normal and some days I feel like I can't even be upright. When I explain to my pcp that the only way I can pee (on symptomatic days), is to release a little, stop, release a little, stop, etc, in order to avert a faint from releasing it all at once, he looked pretty amazed. The strategies we come up with! At least I'm getting my kegels in this way!!!! But it is pretty amazing how many elaborate strategies I have to come up with. With eds, I have all kinds of strategies, that when explained to others, people can't believe I'd put up with. My recent strategy for dealing with my bad discs and sciatica is to have a timer ring every 12 minutes at work, so that I change positions. Yes, it's annoying. Yes, it interrupts my concentration. Yes, I miss the days when I could get into the "zone" and work on the computer for large blocks of time. Two of my docs (whom I like) described that as leading me to lead a "restricted life," that isn't really tolerable. But those are my options-- if I want to keep working. Getting through the day feels like one extended obstacle course.

I wrote recently about how I wanted to pass out during menstrual cramps. Well, I'm beginning to think any kind of abdominal cramp does the same thing. My stomach has been messed up for a couple days, with intestinal cramping. And every time I try to go to the bathroom to relieve the situaiton (sorry for the detail), I feel like I'm going to pass out. this is of course very poorly timed as my husband has just left town. I don't really want to be alone on a day when the faintness feels so imminent. and I need to finish getting ready for work. So maybe it is anything that affects the vagal nerve??? Ideas? I've put my stockings on, had a big glass of salty tomato juice, and I guess will sit on the pot with my head between my knees??? I really don't want to faint on the toilet!!!

If you have eds, joint pain is common. For me most of my joints are loose, but only some have arthritis, probably from years of sloshing around. though I've been told edsers are more likely to wear out their joints sooner from the instability. In fact, a lot of people with eds have normal xrays till things are pretty advanced. I was shocked to discover my hips look normal in tems of joint space, when they hurt so much from my subluxing them all the time.

It may not help for extreme nausea, but in the past I've used those acupressure bracelets for motion sickness that you can buy at most drugstores with some success...

I was unable to work for 3 semesters. I was able to swing it between the Family Medical Leave Act and accumulated sick days. But if I'd been off any longer, I would have jeopardized my job and my insurance. The thing for me was to make sure I had a plan for how I was going to get strong enough to return. I don't know about you, but I need a plan and a vision of where things are going and where I'd like them to go. My first two semesters off were after back surgery and before my eds diagnosis. I ended up going through a pain management program, which taught me strategies to manage, and let me return. The second time around, I'd injured both ankles and my back, so I could neither sit nor stand. I had ankle surgery and some more rehab. I was able to get ADA accommodations to return. My job is pretty flexible, and even if I get stressed, I really love much of what I do, which means I really want to keep at it. Sometimes I've had to go ahead and pay for things out of pocket--scooter, new desk chair, recliner--so that I could keep at it. Can you brainstorm with your doctor and maybe an occupational therapist about what the short and long term plans might be? I haven't had to take time off from ncs/pots, though I've had my moments when I've wondered how I could manage. It does sometimes feel like I don't know how much more health obstacles I can handle being thrown in my path!

i almost wondered if my vagal (?) nerve was triggered. Doesn't it go through the abdomen?

At the time , the ep thought the prednisone could indeed worsen my tachycardia. My resting heart rate was a good 30bpm higher than it is now, off the prednisone. Good luck. It's not a fun ride.

When I had to take prednisone last summer, it was awful in every way. I was a mess. My doc prescribed ativan so I could at least sleep and not be so agitated. I started feeling like myself again as I began the taper. At the highest dose, I couldn't concentrate at all--I couldn't even follow the plot of a tv sitcom. I felt less faint, but it made my tachycardia much worse. I got used to having my daily morning tachycardia episodes where it felt like my heart was beating out of my chest. This got a lot better as I tapered, but then the presyncopal spells and fatigue increased. Nasty drug. I hope to avoid having to ever take it again.

Could you give more on info on that eds website? Michele

I know prednisone is different from florinef, but it was during my taper off prednisone that my symptoms got really bad-- even with a slow taper. It would make sense that tapering would make you more likely to faint.

My main question would be why you have the bursitis. I get it from hypermobility/instability, in which case the shots are just a short-term solution to quiet down the pain. In the long run these shots are not good for connective tissue. I prefer to use braces to quiet down a flare, followed by pt to strengthen weak areas and work out muscle spasms. I haven't gotten a steroid shot since my eds diagnosis, since they're hard on normal collagen. It all depends on the cause of the inflammation.