mkoven

Thanks you guys for being and having been so supportive! I'm about to take my first dose of nimotop-- the calcium channel blocker. Anyone else take it or other calcium channel blockers? The doc thought that there were relatively few side effects with this one, though a few have lowered bp. So that may be the thing I look out for. She wants me on 30 mgs a day for a week, then up to 30 2x a day for a week, then 30 3x a day. So a gradual buildup. Beta-blockers would have been an option as a preventive, if it weren't for my really bad allergic reactions. I'm touching base with my allergist to confirm that those are indeed off the table. I need to ask about the acute med she gave me, toradol, when I'm primarily having neuro symptoms without much pain. Yesterday I had strange visual stuff and dizziness but the pain was minimal. I don't know if the toradol will do much for that, and I'd prefer not to take it if I don't have to. My new neuro symptom is the sense that something is fading from vision on one side-- I still see brightness, but I can't quite get my eye to process it, and then my eye feels really cold on that side. It feels a little like I'm losing consciousness/about to faint but only half of me??? I really hope the nimotop stops all that.

I just came back from Chicago to see a headache specialist at the diamond headache clinic. I usually go into such things very nervous, as I've had so many bad experiences, and their intake form asked a lot of questions about my psyche. I was very fearful of the hysterical female diagnosis. Well, let me rave. I felt listened to, taken seriously, felt like different issues were connected, and like I have a responsive , human doctor on my side. Even if the first meds we try aren't right, (unlike my previous neuro who fired me), I think she will keep working with me. She said she only fires rude patients, not patients who are hard to treat through no fault of their own. She diagnosed me with vertebral-basilar migraines-- connecting my weird neurological symptoms (intermittent clumsiness, one-sided transient weakness, recurrent vertigo (worse at period). Given that I have hyperintensities on my brain mri, that could be from these, she really thinks they need to be prevented. She thinks my neuro symptoms are actually my version of an aura. Triptans and birth control pills are a bad idea. She wants to try me on a calcium-channel blocker (nimotap), starting at minuscule doses as a preventive, and toradol, as an acute. And she thinks I need to be on aspirin or plavix, just to be safe. She also confirmed what people on this list know, but that my local docs don't seem to, that ncs/pots and migraines "live togehter." I was so happy to have this meeting go well, that I actually wanted to cry for relief and joy at the end of the appointment. I get the sense that she is committed to getting me better. And the fact that all she does is headaches means she can think outside of the box more easily than some. I've had these weird neuro symptoms intermittently for 5 years. I've been called crazy. I've been told I have benign positional vertigo-- (she was surprised that noone made the link, when I only get vertigo on the first day of my period). I've been sent for psychotherapy to get over whatever issues were making me imagine these episodes, including from some very reputable clinics (that will go unnamed)-- because by the time I'd see the doctor, the weakness had resolved. I've been told I was having TIA's. I was told in May 06 these were maybe migraine related, but then was dumped by my local doc when I reacted poorly to the first two drugs he prescribed. It's so wonderful to feel validated. Of course the next step is to see if these specific treatments help. But it is nice to see her be proactive and say that it is not acceptable to leave me in a state where I keep having these weird neurological episodes, that are probably not good for my brain in the long run.In the short run, they are super creepy. Her approach alone gets her big points. i just wish I'd gotten here several years ago.

I take a measuring spoon, and go for no more than an eighth of a tsp for 12ozs liquid. The sweeter the liquid, the less I notice the salt.

Hi, Recently I've noticed that when I'm in a bad state (now), I often feel intensely sleepy when I also want to pass out--like I may do both at the same time. Sometimes I almost feel drugged, like I've had a sedative-- when the only drug in my system is ibuprofen and maybe midodrine. Anyone else have this? I want to yawn a lot-- a brain's signal of wanting more oxygen??

I'm your height, but carry somewhat more poundage, so... I've got some bulges! but I hear you on putting up with some discomfort in the name of not passing out. My main concern is that I currently already wear a low back brace, two knee braces, and two ankle braces, so this would add to the fun-- but again, probably worth it. How is the hot and itchy factor?

Oops-- just saw your answer. Thanks for all the info!

Wow, what coverage! Is it a problem wearing stockings with it? Do you wear them under or over? On the bright side, it looks like it will eliminate various "unsightly bulges"!

Can someone give me a link to an abdominal binder that they've liked and that has worked? I currently wear a hard plastic lumbo sacral brace for pelvic instability, but could conceivably wear it on top of a binder.

Just curious if anyone has tried stockings tighter than 30-40, and if they were helpful and/or tolerable. Thanks! michele

Hi everyone, I get very confused about how much salt to take in. I have thermotabs, but it looks like each tablet is only 8% of rda. For those of you who take them, how many do you take a day? I've tried taking two with each meal, but can't tell if that's " a drop in the bucket" or too many. I also salt my food, and out salt in drinks, cereal, etc... (everyone else around me looks at me like I'm completely insane.) Thanks! Michele

It helps some, with fewer crashes between doses. I think I may simply need more than 2.5 at a time, but at this point feel too agitated. Maybe that will improve? I also think I'm ok lying down on it. My bp at its highest on the midodrine was 100/62 supine today. That would give me more flexibility if I don't have to force myself to avoid reclining. My vision feels a little off--like it's a little hard to focus and things are too bright. Don't know if that's midodrine, fatigue, or residual from my migraine last night till this morning.

I finally got my doc's okay to try 2.5 every two hours-- after a multi-day wait. I'm feeling truly cruddy, so I hope this will help.

I have this too-- and have eds. Getting an iv or giving blood has become a real challenge, and I easily react to all knids of things that never bothered me before. I have/had one really good vein on my right arm, but it now has lots of scar tissue on it, and no longer wants to be used.

Does anyone know why it's bad to wear stockings at night?

Hi everyone, I'm scheduled to see Janice Gilden on 1/22 for the first time. Her receptionist told me to be prepared for a day of testing. Not sure what to expect. Locally I've had: standard bloodwork, ekg, dobutamine stress echo, event monitor. Any guesses what would be in the workup for ncs? My real concern is about a tilt table test. The local ep didn't think one was necessary back when he first saw me in 9/06, as my symptoms and triggers fit ncs. Plus, I am incapable of standing still and not moving without severe joint pain for more than a couple minutes. I am constantly squirming to keep my hips and pelvis aligned and can only do so if allowed to move. but then this ep is no longer really following me, and we need a new plan. I really hope I'm not pushed to do something that could cause more joint pain-- and possibly damage, as things rip for me if they slide out of place and I'm not in a position to squirm them into place again asap. This I sadly know from experience. If you put your hand over any joint in my pelvis, low back, or hips, you can feel all sorts of sloshing and sliding. I'm really not exaggerating. Plus, I just read on ednf (the ehlers danlos national foundation website) that people with eds, any type, have a higher risk of coding during a tilt table test--per Nazli McDonnell on her connective tissue study. Anyone know about this? Of course I want as much information as possible, but am really afraid of getting pushed into a tilt table test. I'll give as much blood as anyone wants, I'll give urine, saliva, I'll get zapped, whatever--but please no more (avoidable) joint injuries and other unnecessary risks.

I actually think it tastes better than gatorade-- definitely fewer artificial chemicals and colorings. I've done it with orange, apple, and pomegranate juice. My measuring is very approximate. It's less convenient than something premade, but probably cheaper. If you're at a restaurant, it's easier, as you just order juice and water. I probably have at most a fifth cup of juice to 12ozs water, and an eighth or so teaspoon salt. I've added a little splenda on occasion if I want it sweeter without all the calories of a full glass of juice. If you dilute apple juice just right, it looks like white wine! I got some funny looks from my inlaws when I was salting my drink, but you do what you gotta do!

I made it home. It took two days. The ends of the day are always worse. the shortness of breath worsens with acceleration, and at one point when hubby accelerated superfast, I felt instantly MUCH WORSE. He had to stop by the side of the highway so I could cath my breath. If I really focused on breathing super-deeply, to use all available lung-space, it was better. Also slow transitions.But I really had to think about my breathing, and my chest was really sore. I also noticed my nose got really congested-- maybe vasodilation??? It improved when I got out of the car. I don't otherwise have a cold or cough or sinus infection. Given how much I like to get out of my small town, this is really annoying. It's hard to stay calm when it's hard to breathe. How to explain the effect of vehicle speed on symptoms??? Changes in elevation definitely make things worse, but the last stretch was flat-- Indianapolis to Champaign. Sheer fatigue from a day in the car??? I've also noticed that I have a hard time adjusting my breathing from upright to reclined. It's like too much air all at once?? or too little??? I've noticed it's worse when I fully exhale than when I inhale. All those adjustments that are s'posed to happen naturally, are slow and deliberate for me. And the chest pain now definitely feels breathing-related. (I've pushed my event recorder each time, and when I call it in, it's normal.)

I've actually found that I do better at holding on to the fluids with a glass of water/splash of juice/ multiple shakings of juice than I do from gatorade or other sports drinks. I add just enough juice to flavor the water and then as much salt as I can stand without making it gross. I notice that I can drink two big glasses like that and not need to pee (sorry!), but if I drink the equivalent in gatorade or propel, I pee it out pretty quickly-- not sure why.

Thanks. I've tried to contact him to no avail. Maybe because of the holidays? The clinic I go to is TERRIBLE about returning calls. I like my doctor when I'm in front of him, but he's IMPOSSIBLE to access otherwise.

We're still on the road, trying to get home to Illinois. I'm just so worn out, physically and mentally from this big flare. Sorry to vent. But it's really so frustrating to have such a struggle to stay upright, to not flip out when I feel like I'm going to faint or am breathless, and to feel like my medical folks are non-responsive. I've really had it. And so has my spouse. He wants it "fixed." I have an appointment with Jannice Gilden in Chicago on 1/22. I hope she can help. I have to go back to teaching, including night classes before then, and have no idea how I'll do that. Some sort of switch has been flipped in my body, and I can't unswitch it. Thanks you guys for reading. Michele

Hi everyone, I tried to up my midodrine to 3.75 mgs from 2.5, and it just made me way too agitated. My bp needs more, but my psyche can't deal. Somethin I've noticed though is that it starts to wear off after 2 hours. Any ideas if it would be okay to take 2.5, wait 2 hrs and take 2.5 more, rather than 5 all at once? I'm thinking it would give me more even coverage without making me feel like I want to jump out of my skin. Thanks! Michele

Thanks, Melissa. I'll have to do the experiment and see what my supine bp is on it. How high do you think it would be safe to let it go--140/85???

Hi everyone, I've posted a lot recently on my recent flare. We recently drove from Illinois to Virginia for the holidays, and it was very hard on me. I now have to figure out how to get home safely. Typically I ride in the back of a minivan, with the seats collapsed on a camping mat, lying down-- for my back, primarily. But on the road out, the combination of the motion of the van, worse with acceleration, and changes in elevation as we went through west virginia and western maryland were awful. I felt faint and like I couldn't breathe. I really don't want to repeat on the way home. I can fluid and salt load, but I will also be closer to my perdiod, when i feel worse. Currently I'm only on midodrine, but can't take that if I'm lying down. My husband is dreading the trip, but doesn't know how to avoid what he calls simple facts of geography--like the allegheny mountains between points a and b. Any advice? I'm not looking forward to it. I can take ativan for my nerves, but what to do for the actual symptoms??? just drink gatorade till my eyes bug out and we have to stop every 20 minutes? as soon as i get out of the van i usually feel a lot better. but my husband can't deal with this much more either. he'd gotten used to eds affecting my joints, but not the faintness. i think he may never want to travel with me again. if i didn't feel the need to leave rural illinois, (which i do!), i could deal!! thanks!!! Michele

I'm having a rough time with car travel right now, and when we were driving through mountains with changes in elevation, I felt I could barely breathe and my chest really hurt during and after. How weird. It improved if i kept swallowing to pop my ears, but I've never had this symptom before.

Hi Nina, That sounds awfully high. I'd give a call to your doctor. Maybe some sort of adrenaline surge on top of the exertion?? Take care, Michele