Beccapooh

Count me in the migraine club, too!! I've had migraines all of my adult life and part of my adolesence, too. My sister gets what's called an "Absence Migraine". She just gets the other symptoms, but, no pain (lucky girl!!!). She'll become suddenly light and sound sensitive and vomit and want to sleep, but, no head ache!!! Weird. Bec

The first time I fainted was 18 years, 6 months and 1 week ago (it was my 16th birthday, so it's easy to remember!!). Things have pretty much been up and down since then. I have good stretches (for months even) when I don't even think that I'm sick, but it always come back to remind me that something isn't quite right in my body. Good question, though. I've been curious, too. Bec

I've already posted about this, but I'll just throw in my two cents!! Toprol XL is the worst drug I've ever taken, period! I was evil on it. I couldn't sleep, I didn't want to eat or be around people or anything. I was a royal "B". I felt like I was being driven by an engine. I got the shakes even worse than I normally have them. I felt like I was on major caffeine or some other awful stimulant all the time!!! I wish that it would have worn off after 16 hours!!! I didn't sleep more than a few hours over the course of a week!! It was terrible. (And my doctor told me that all those symptoms, I just described, are impossible to have on a BB!!) Needless to say, I took myself off of it and I'm just suffering now. Bec

Hi to all!!! I ended up calling my doctor and got a script for cough syrup with Codeine in it. Since, the coughing was my major complaint, that's what "we" treated. I'm okay, I suppose. Although, I think that I've started passing my first ever kidney stone. OUCH!!! If it's not one thing it's another. I'm going to go lay down and die now............LOL. (not really, but, I am going to get drink some hot tea and lay down on a heating pad!!) Thank you all for your concern and ideas and well wishes, etc. I really appreciated them, very much!! Bec

Okay, I know that this is going to sound super stupid, but....here goes. I've had,what I thought was a "simple" cold for about 10 days now. You should know that I AM predisposed to getting Pneumonia, first of all. Okay, having said that, I started with a very deep cough night before last. It wasn't too bothersome---at first. Now, I'm coughing so hard and so deeply that I really feel like I'm tearing my throat open. Well, lo and behold, when I coughed last time, I did cough up a small amount of greenish (sorry so gross) phlem with an even smaller amount of blood in it. As of getting up this morning, I'm dripping with sweat, even though I don't seem to have a fever (maybe I do, who knows....but, I get fevers often for no apparent reason!) I am shaking like crazy. Weak as a kitten, super sensitive to light (which IS normal, but, I'm not usually THIS sensitive to it), super sonic ears today (more than normal), I'm also getting my olfactory hallucinations with a vengance. I kinda feel like I'm going to have a seizure, but, not quite. I just feel odd, overall, unwell. I also have (this is super gross, sorry, y'all!) a lot of rectal pressure. Almost like I'm trying to poop without actually trying to poop (Oh God, did that make any sense??) Anyway, do I go into the doc or not? He's all the way across town....like 65 miles away. I'd have to drive myself (of course) and then I'd need to be back here in less than 4 hours to get my kids from the bus. What can I take, here at home, that might help?? Please, I need to feel better. I truly, really, want to curl up and die! Bec

Hey there!! Futurehope wrote - "No its not the same as Crohn's disease or intolerance to gluten. Your Mom's doctor probably thought you had sensitivities (or allergies maybe) to the foods you mentioned. Maybe you do have nasal allergies to molds?" Actually, I don't have any nasal allergeries at all (that I know of). I'm not one of those folks that gets all sniffely every spring or fall or whatever. What the doctor told me back then (now, again, this was 18 years ago, so they may not have known a lot about this stuff yet) was that my body didn't tolerate any sort of yeast, mold, spore or fungus. That is was "attacking" my gut and my body in general. She suggested that I didn't need any "treatment" really, but rather to change to this strict diet, in order to be "well". I had just been hospitalized for six weeks and no one could figure out what was wrong with me. I was super thin (seems funny to say that now......boy I am so NOT super thin anymore....) and couldn't keep much food down, had severe diarrhea, was running a fever and had almost nonstop migraine pain. The funny thing is, in hindsight, I think that I was having a POTS/Dysautonomia and/or VEDS flare up. Weird, really, to look back and be able to pinpoint all the times that doctors have been wrong!!! Anyway, I guess that my point is that, I don't know "what" precisely THAT episode was, but, I can say that I felt much better after going off of all gluten, cheese, nuts, mushrooms, etc. Also, back to the topic of autoimmune issues. I was DX with Myasthenia Gravis last year. Although, I've since been tested for "some" of the antibodies and it came back normal, my Neurologist still believes that I have this autoimmune disease. I, myself, don't really know what I think anymore, to be honest with you. I do, however, believe that I have something of an autoimmune sort. I don't know if EDS falls into that category or not, but I know in my soul that the test for VEDS will come back positive, as does my Geneticist. It does seem odd how many of us either had before, or now have an Autoimmune issue. Kinda makes me think that POTS may be some sort of Autoimmune "type" issue as well (underlying, at least). Bec

Hi Y'all! Sorry that I must of missed what the whole IVIG treatment was about/for. I've been dealing with my own stuff and must have missed some postings (or maybe even read them, and then forgot....LOL, who knows, huh?). I only asked because I was given IVIG treatment when they thought that I had MG. Turns out that I don't "officially" have MG, due to not testing positive for the anti-bodies. (Even though, I've been told that not everyone does test positive for them.......oh well!!) Anyway, WHATEVER I DO have, did seem to respond well to the treatment. That is, after I got super sick from it!!! I was just curious, if maybe you had also gotten ill from the actual treatment itself. I got aseptic menangitis and ran a really high fever, etc. much like you did and they couldn't find an "infection" either. It was just my bodies lovely reaction to the treatment. (I think that you and I seem to have that in common!!! UGH!!) At any rate, I'm just super curious as to why the IVIG treatment worked for me if I don't have Myasthenia Gravis? No one seems to be able to give me a straight answer, but, I AM learning, that IVIG treatments seem to be given for a lot of things, not just MG. (I was told that MG was very nearly the only thing that the treatment is given for anymore. **This was probably most certainly mis-information, relayed to me by one or more of my mis-informed doctors!**** I'm glad that you're feeling better, no matter WHY you're feeling better!!!! Take it slow and take good, good care of yourself as I'm sure you already do!!! Bec

How do you know that you have Celiac Disease? I've read a lot about it here and there and this site, but, I really don't understand what it is. I was told when I was a teenager to cut out all yeasts, molds, spores and fungus'. That meant bread, nuts, mushrooms, etc. I was put onto a strict diet, following those guidelines and I have to admit, that I felt much better (in time, of course). The doctor that placed me on this diet, never told me what the condition was called (as far as I know. My Mother isn't very good at relaying information, if it isn't to HER benefit, so who knows...). Could this be the same condition or not?? Bec

I have tons of autoimmune issues and no one seems to know what's going on. I've been DX with Myasthenia Gravis, yet, MY bloodwork came back negative, so now I've been told that I don't have it. (Whatever) I respdonded well to the treatments for it; which incidentally include Mestinon. I also had IVIG treatment for it and improved greatly with that. So, who knows? I'm being worked up right now for Vascular Ehlers-Danlos Syndrome. Now, I'm not sure if that's technically an autoimmune thing or not, but, what it boils down to is an inability to produce and use collagen properly. For me, it's manefesting itself in problems with bleeding, bruising, skin issues and a MVP. Can I ask, what's POH? I've never heard of that one before?? I didn't "qualify" for POTS because my heart rate was 2 beats per minute shy (again, WHATEVER!!!). I was also told that my BP was too low to have POTS. Okay.............so........then, what's wrong with me? I've been fainting for years and have EVERY other symtpom, and I mean, EVERY single one. HEAVY SIGH!!! Anyway, I guess that lots of folks do indeed have POTS and autoimmune issues. Good luck on your journey!! Bec

Okay, first of all let me just say "WOW" and "GGGGGRRRRRRRRRR". I've gone through similar experiences myself and just don't understand how folks can still be "practicing" (I use the word literally, of course) medicine!!! In a way, I'm glad that you're getting a break, I can't lie. I'm just sorry that it has to be because you are so ill, again.......still, what's the right word here?? Secondly, please remember that I'm new here and I don't know my head from......well, you know, but, why do they give you IVIG treatments? I was getting them to treat the MG, that I don't have---LOL. Does it work for POTS, too? I for sure noticed that I felt loads better once it was all over with. I did get aseptic menangitis from the treatment and it had to be broken down with a few days in the middle so I could recover somewhat. I'm ill myself, not like you however, but, I do know that just being a little bit sick is just too much right now. I'm getting worked up for VEDS and POTS at the same time and now, I'm sick. PERFECT!! Sometimes, I really wonder why God seems to heap tons of stuff on some of us, and it seems like, nothing on others!!! Take GOOD care of yourself and get plenty of rest. Don't let them push you around!! Those mean ole' doctors!!! I know that you stand up for yourself, but wouldn't it be nice, if you didn't have to??? (((((((((((((((((HUGS))))))))))))))))))) Bec

Lukkychrm- Let me know when you get here, okay? Maybe we could chat live on IM or something. Good luck and I know that you'll do well!!! Pace yourself and take good care of yourself (when you can!!). (((((((((((HUGS))))))))))))) Bec

I had the exact opposite side effect as you had!! I couldn't sleep, couldn't eat, couldn't stop moving, was extremely angry, irritable, moody and basicly evil emobodied!!! I was on Toprol XL for the longest two weeks of my life. I won't ever take it again-----you can't make me. Oh, wait, sorry, it was just that paranoia coming out again. (Yes, it really did make me paranoid!!) I'm not really on speaking terms with my Cardiologists PA right now, so apparently, I won't be getting a new BB anytime soon. Bummer, too, because even with all the side effects, I did FEEL better physically. Good luck finding one that works for you! Bec

Okay, I know that this is a Dysautonomic/POTS site, but, I have to say that after speaking to the gene therapist over the phone I was amazed at how many symptoms of POTS that there really are in VEDS. I still don't think that it accounts for ALL of my symptoms, clearly, but, it still amazed me how many things crossed over. She was telling me that she thinks that EDS, in general, is under diagnosed because so many people attribute the symptoms either to aging, or the cycle or just being crazy, whatever. Much like we POTSy folks do. Anyway, I'm going to bite the bullet and go ahead and do the biopsy to make sure that I don't have VEDS. Again, after speaking with her and answering all of her questions, she seems "pretty sure" that I "probably do" have VEDS. Boy did she ask some intimate questions or what??? She also said that having the MVP and probable MVP Syndrome, actually was another "symptom". She really feels that things are linked together and that it might even be the VEDS that caused the POTS. I guess that my point of even posting this at all on this site, is just to bring it to the forefront of peoples minds. Awareness is power. If your symptoms/issues don't seem to completely be explained away by POTS alone, don't be afraid to keep digging!! We all deserve to feel better and live happy lives. I'm just glad that I'm finally being my own best advocate, you know? It's hard to feel worthy after so many doctors have made me feel crazy, but, I'm going to make myself a priority. If, for no other reason, then my children. They deserve to get their Mom back (or as close to it as I can come!!). I will keep y'all in the loop as to what the actual Genetics Doctor says, too. My appointment was scheduled for tomorrow, but, I decided to move it back a couple of weeks until both of my girls were in school and doing well. That way I could actually go to the doctor alone (what will that be like??). Let me know, via PM, if any of you are curious or have EDS symptoms. I would be interested to see how many cross overs there really are. Bec

Taking Lunesta helps the insomnia and I now get 7-8 hrs sleep a night. See, I wish that Lunesta helped me, but, it doesn't!!! Nothing seems to help me sleep. I've even tried some not so great things (won't disclose here, probably not even safe!!) and they didn't work either. I have the same issue with not being able to get my self up. I'm worried, because school is getting ready to start (this upcoming week) and I don't know how I'm going to get up and get my girls ready.?!?!?? It was horrible last year, too and my poor husband had to suck it up and help out, but, this year, the baby is starting Kindegarten and she won't let Daddy do anything for her (she quite modest). So, I'm going to have to get up. I don't know how on Earth I'm going to do it. It's not like I'm being lazy and chosing to not get up, I simply CAN'T do it. What's the deal, huh??? Bec

So, over the last few weeks, I've noticed that right after I wake up (or get up, shall we say, since sleep isn't really coming lately) I have, what I call, a halo of heat around my head. It truly feels like I have something perfectly round and about the size of a halo that's radiating heat down my skull. I actually keep on reaching up to feel what in the world is wrong, it's the strong of a feeling of heat. It truly feels like I should be able to remove it. It's not a fever, although I get those regularly, too for no apparent reason. This is just my head. And let me tell you it's HOT, HOT, HOT!!!! It actually makes my eyes feel hot and not really watery, per say, but blurry maybe. I don't know, it's hard to describe. Is this, yet again, just another ANS malfunction of body tempurature? Even though it's so specifically located at my head? This will last for hours after I rise and just seems to slowly fade away. Almost like one of those bag things that you can microwave to get them warm and them your supposed to put them on your sore muscles or in your bed to keep you warm. It's like that, the heat just slowly disapates. But, when it's HOT, oh boy, is it hot!!! Rebecca