mkoven

I've never handled birth control pills well-- they make me moodier, give me extra sore breasts, and oddly, made my periods MUCH worse. I always seem to have idiosyncratic reactions to meds.

i still have yet to actually start, but am achey, and keep hitting the wall energy-wise. I was standing at the register paying for purchases and suddenly felt shaky and RAVENOUS, even though I"d had a big lunch 90 minutes before. All afternoon I've been so hungry and shaky, like my blood sugar is out of whack. I eat and the an hour later, starving again, and weak/shaky. And my lips are itching and quivering---WEIRD.

Hi, Just wanted to say after wearing Jobst, allegro, and mediven conpression stockings I'm downrighted excited about mediven open-toed, waist high compressions stockings (30-40). they're pricey, but fit me better, more comfortably, and more durably than Jobst or allegro. I like having my toes free, and they come with this little satin thingy that makes them easier to put on. A minor pleasure, but I'll take it. BTW, I am not a rep! Michele

Sounds like a great experience. Could you give us info on the article? Is is accessible on the web? Michele

hi everyone, I'm head long into pms, and have noticed that over the past several cycles, I've felt oddly weak. I don't mean tired, but clumsy--like I can't quite get nerves to fire from head to toe. It's passed each month, but I don't know how to understand it--blood sugar? potassium? Whenever I mention that anything is menstrually related, my doctors usually blow it off, but I know that something profound happens to my whole system. I get itchy, fainty, cold sweats, wanting to vomit, heart racey-- all my normal symptoms amplifed by a factor of 10.

It's still so hard to believe! I've been living with this precarious sense for so long. We did manage to go out last night for a mini-celebration. But even without huge festivities, this is a gift that will keep on giving... It would be nice to see my body get on board with the good news, but I fear that's more complicated.

Thanks so much, you guys. My husband wanted to take me out to dinner, but we're both so wiped. He just went to pick up carryout. I hope we can be a little more energetic this weekend.

In the middle of my cruddy health, I've been trying to work. I've been on the tenure track at U of Illinois since 1999, and sick since 2002. Anyway, my boss just told me this morning that the college voted in favor of my tenure case. There are still a couple more stages, but that was a big hurdle. Yay! I'm hoping that this will bring my stress level down. If I were feeling less nauseated and faint, I'd want to go out and CELEBRATE tonight...it will be a pretty mellow tummy-friendly evening, methinks. But this punctuates the last eight years of my life-- and longer if you count all the work before. And just in time for my 40th birthday.

What is INR? I've had transient weakness, but showed no stroke- after ct scan and mri/mra...normal blood clotting. at the time i was told i had hemiplegic migraines, but i think it was just pots limiting blood to brain when upright...I can't tolerate aspirin--to hard on my stomach and ringing in the ears...I was a little disturbed to learn I have some plaque in my left carotid. So I'm trying to eat well and avoid saturated and trans fat. Strokes scare me, as my grandmother had several and I saw what they did to her.

Often when I'm half asleep, I feel this weird sensation in my chest- instead of a regular heartbeat, it feels like a rollercoster sensation in my chest. It doesn't happen so much in the day. My doc said this sounded like a pvc. My ekg, echo, stress echo, and event recorder have only ever shown tachycardia, but at a normal sinus rhythm. Medwise, I take benadryl, singulair, zyrtec, allegra, and pepcid. sound familiar? Ideas? Michele

You could also try rinsing your sinuses with saline. In most drugstores there's a product caller saltayre that you can use. Once you get used to squirting water up your nose, you can buy a netti pot and make your own saline. It really helps wash out the gunk and prevents sinus trouble. A year or so ago there was a big story about this, as many ents recommend it. and the great thing is it's med-free. after i do it, it really opens things up.

don't know if this is the same, but I have something called dermatographism-- any pressure on my skin turns it red and welty and sometimes itchy. it's apparently common in allergic people-- and to me it feels like my autonomic symptoms and allergies are very connected...

thanks to everyone! it's good to know my symptoms are not unheard of. I've been able to sleep the past 2 nights, luckily. But I wake up a lot, and have a hard time settling down. Often it's my joints--my pelvis and spine will keep sliding out of place, and I have to squirm to get them back in (eds). Or I'll get these weird itching attacks, or adrenaline surges. Takes a while to settle down. Ativan used to do the trick, but I'm all out, and don't think I can get more.

I'm short and roundish... and female

Still not totally normal, but I'm up to standing 10 minutes, and am generally feeling much better. I wonder if my ncs, which was mild till this summer, was made much worse by allergies and then prednsione withdrawal. I'm hoping if I can keep up the allergy control,and if more time elapses from my prednisone weaning it will quiet down some more. I still get easily tachycardic, but not super high-- rarely over 120. My resting heart rate is still not what it used to be--low 60s. I'm usually in the 80s when resting now.

I have a terrible back. I've had disc surgery and have torn both sacroiliac joints. I don't however take meds. I've had a lot of good pt-working on releasing muscles in spasm and strengthening weak muscles. I also do pilates, have had occupational therapy to make sure I'm doing things in as back-friendly a way as possible. I also have to change positions throughout the day. I rarely take pain meds, unless I get nerve pain. I used to take vicodin for that, but am now alllergic. Darvocet takes the edge off. When it was off the charts painful I took dilaudid-- but too short-acting. In general, I've learned what flares me up/helps, and manage that way. though right now, I'm having a new bout of sciatica...

Yep--like you, no test abnormality. My event recorder shows periodic sinus tachycardia. couldn't do the tilt table because of my joints, but I get all the symptoms from standing, so the ep felt compfortable with the ncs diagnosis. But eds is the underlying cause, most likely for me.

I did eventually get some sleep, but very fitful. And the temperature disregulation is reallya nnoying-- I go from freezing to boiling, when the thermostat stays the same.

Hi everyone, for the past two nights I've had weird symptoms as I start to fall asleep. Right as I nod off, I awaken with a startle, as I start feeling like I'm gonna pass out (while lying down), get weird pressure in my head, throat tightness, feel my heart race, like I might throw up, itchy, and like a roller coaster sensation in my head. Needless to say, I'm then wide awake. I start relaxing, and the same thing happens again. I've tried changing position-- to no avail. REwind repeat. I just drank some tomato juince, in case I'm dehydrated. But I really need some sleep! Of course my spouse is out of town. It just freaks me out. At the moment, I'm okay when I'm awake...like my ans is doing something funky as I drift off to sleep??? Anyone have this? the only other thing i can think of is that i regularly take 2 benadryl b4 bed--- but i've been doing this for forever... don't know why it would bother me now. I guess I can try to drink some more and give it another shot. I really am sleepy, but also kind of unnerved. And oddly, very cold--but I've cranked up the thermostat to 75, so I should be okay--but I'm shivering. I've also taken my bp and it's any where from 125/90- 105/60. arrgh. michele

I've posted a couple times about tilt training-- basically desensitizing the bodybody to upright posture in tiny incremental increases. Wanted to give an update. Despite some skepticism- my own, and from others on the board, I got the okay from my doc to try. I started one-two minutes-- in other words, the length of time I could stand, stopping before feeling bad. I've slowly added 30 seconds at a time, and am now up to 9.5 minutes that I can remain standing. It might not sound like much, but I think it's really helping. My rule of thumb is never to push it-- if I start to get sweaty, nauseated or otherwise feel bad, then I stop immediately. I try to do it at least every other day, at the end of the day, so I don't mess myself up for any remaining plans. In general, I have to say I'm overall feeling somewhat better. Certainly not cured, but do better upright for longer periods. Btw, I do wear my compression stockings while doing this. And if I need to squirm one of my loosey-goosey eds joints back into place, I allow myself that. At first I never thought I'd see 10 minutes, but I'm getting there. I also walked today for 14 minutes! I bring my walker with the fold down seat, so I can take a break if needed, and often need to slow down... In general with me, SLOW increases are always best... I know that this might not work for everyone. I guess it depends on the mechanism for everyone's pots/ncs. For me, we're pretty sure it's eds. I think in part I had gradually lost my ability to remain upright, because I've had so much joint pain, I rarely stand or stand still. I guess I'm trying to recondition my blood vessels to constrict. I don't have any illusions about becoming "normal"-- I will always have eds because my body makes bad collagen, but want to be able to function as close to "normally" as possible. Just thought I'd share a minor success story. I just want to be well enough to go shopping, work, etc...my ambitions are not lofty.

Salsa straight from the jar. Two tablespoons of Frontera salsa has 10% of the rda of sodium. And I will happily eat half a jar in a sitting. Frontera tastes really good and has many different flavors. the acidity can be a little hard on my stomach, though.

I go for popcorn, chicken broth, and tomato juice. I like salt, and am consuming gobs of it, but am not always sure it makes a big difference in my bp or symptoms.

I have a manual wheelchair at home and a scooter for use at work. It's weird, because people treat scooters differently from wheel chairs. The scooter makes me feel less sick/ilike an invalid than the wheelchair, for reasons I can't explain. My scooter (red!) seems more like a sportscar... well, maybe not. I got both because of my eds. I can't walk long distances. People always seem surprised that I can actually walk. And then I do get questions from strangers. when I am without either, I have crutches. I do like having something to signal my entitlement to a seat, the handicapped stall in the bathroom, etc. Otherwise, I look pretty "normal"--just a somewhat chunky woman in her late 30s.

I'm not sure where I pool-- I couldn't actually do the tilt table as my joints hurt too much to stand so long. How do they determine that?

BTW, the testing for type iv (the vascular kind) is through a skin punch biopsy. But it is one of the rarer types. Most people are classical or hypermobile--but still may have some vascular issues. Lavallee recommends periodic echocardiograms to check on the aorta, as it can dilate more easily in eds. they are now testing some versions of classical, but it's very preliminary. The main lab for this is in Washington state. I did see a rheumatologist, but must say I didn't get much from it. I don't think he had much experience with it. I love my sports medicine doc. He trained with Lavallee and knows all about hypermobile joints and how to strengthen and protect them. And what I really need is info on managing specific joint injuries. There isn't really a drug that helps eds, other than pain meds, as needed., and any other symptomatic treatment. For people with vascular issues/fragility, it's important to keep bp down.