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

I also have trouble laying flat on my back. At an angle, no problem. I sometimes get dizzy, sometimes I get that weird sensation that my body is puffing up, but all the time I have a feeling of pressure in my neck (on the left side). It's a feeling like my neck and throat are being squeezed. I'm very aware of my heart beat in my throat, too. I can't swallow when I lay flat either, so then I end up choking on my own saliva, which is nice.....NOT!!! I just don't lay that way at all. (I've had shoulder surgery, in April, and I can't seem to heal from it, so I can't lay flat and I can't lay on my right side either!!!! ARGH!!!) I've often wondered what it's all about myself. It's a bummer that there doesn't seem to be some magic answer, you know?? Bec

I had a complete hysterectomy and wasn't allowed to go on HRT because I've had tumors removed from my right breast and breast cancer runs in my family. I can tell you that my life took a quick and sudden turn for the worse after this surgery. I felt "better" because I had been bleeding for 16 months straight prior to the surgery and having no uterus made that stop, but, overall, I did notice a huge increase in all my other symptoms/issues. Of course, since I'm still not officially DX, I can't say that it was (for sure) my MVPS. It does suck, though, regardless of what you want to call it. Bec PS- I had my surgery when I was 29 years old. I'm 34 now and I still don't feel good.

I, too, can totally relate. I've just started taking Beta-Blockers (Toprol XL) and I have never felt so over the top surged out of my head before!!! My doc keeps telling me that it's impossible, but here I am. I can't sleep when I take them, period. I slept like 3-5 hours in a week!!! Not good. I was a horrible mess. Of course, I was on my first vacation in ten years, so there's that. I mean, I know that I was going to have hard time no matter what, because I was so anxious about my trip and all, but, add the BB on top of it, and forget it. It doesn't seem fair to me that we have such issues with just normal everyday stuff!!??!! Isn't sleeping supposed to be a natural human instinct? Isn't being nervous about a final a normal thing, too? Why can't our bodies just adjust to normal daily events???? I'm just angry today, I'm sorry. I'm feeling quite sorry for myself. I can't get any help and I can't sleep either. The docs just don't seem to care about me as a person, is all. If they had to live in our bodies, through all of our "normal" daily events, THEN they'd find a way for us to do things like sleep when life gets tough and swallow solid food and take a walk with our family!!! I'm sorry that I have no words of wisdom; only empathy. You're not alone and we all understand that feeling of anxiety, sadness, exhaustion and desperation. I know that you're going to do well on your final and then you'll sleep like a baby!!!! Good luck on your journey!! Bec

As far as the IVIG goes for our little Miss Sunfish, I'm hoping that it goes well for her. It was a very hard treatment for me, personally. I ended up with aseptic-menangitis from it and was in severe pain for about two weeks. However, once that part was over, I felt better and better everyday. I felt great for about 6 weeks, too!!! This was back when they thought that I had MG only. I had severe muscle weakness and responded well to Mestinon (which is funny, because I was told that the ONLY condition that Mestinon worked for was MG, so that was another reason why they DX me with it - differential!!). The blood tests and EMG/SFEMG always came back "normal", so they could never figure out why I was so sick and it looked so much like MG, but the tests said "no". The only test that came back positive for MG was the Tensilon test (Tensilon is a drug that is pretty much a big brother of Mestinon!!! ). Anyway, I'm greatful for the IVIG as I really think that it was a turning point in my life. I can't imagine still being as sick as I was last summer. It was horrible. Since I can't seem to figure out how to get tested for any sort of ANS issues or how to figure out whether or not it's autoimmune, hyperadregenic or both, neither, I guess I'm screwed. I still, technically, have the DX of MG, but I know that it's wrong. Well, I don't KNOW, I guess, but it just feels to me more like ANS issues and VEDS, but, hey, it's just MY body, what do I know, right??? Emily- How did they figure that Sunfish has/had an autoimmune type of dysautnomia? You could PM me, if that would be okay with you and Melissa (please and thank you!!). My doctor has told me that he'll order whatever tests I ask him to, I just need to know what to ask for, you know??? Good luck on your journey!!! Bec

I've had insomnia my whole life. I mean, it. MY WHOLE LIFE!!!! I've tried various things and the thing that's weird about me, (well one of the things, anyway) is that sometimes sleeping pills (or any drug/med/alcohol/whatever) knock me on my butt and other times, I get no effect from them at all. Nothin'. No go. Is that weird or what? Does anyone else feel this way, too? It's like, feast or famine. Either I'm over the top super hyper sensitive to whatever I've taken, or not at all. Nowhere in between, either. So, I'll try to take the sleeping pills and either they work TOO well or not at all. Basically, I sleep about 3-4 hours a night, but then I take a nap, so I answered that I get about 4-6 hours of sleep because of that. Bec PS - Oh, BTW, I think (pretty sure) that I have the hyperadregenic version of POTS. Anyone else think that this might be the reason why some of us sleep too little and others too much??? (Just my ignorant theory!!)

I, technically, have MG and POTS. I have NOT been UN-diangosed with the MG yet, so that's why I say it that way. I, too, have a thymoma and have been told the exact opposite of what you were told. I was told that it's probably not effecting me at all....... . Since it hasn't grown in the last six months, they've decided to leave it be, since the surgery to remove it is quite horrible (cracking the chest and all....). I've never quite completely fit into either category. I have "extra" symptoms/problems, then either disease alone can "account" for. Although, I believe that the "OTHER" disease is probably more likely to be vascular EDS. I'd be more than happy to PM with you, if you would like. I've been through the entire work up for Myasthenia, so I know what you're in for. LOL, that sounds ominous doesn't it??? Good luck on your journey!! Bec

Melissa- Take good care of yourself!! I'm so glad that "they" figured it out before things got super bad....... Get plenty of rest and listen to your body, as I know you already do!!!! (((((((HUGS)))))))) Bec

Well, ummm, I don't know if what I'm about to share with you really counts or not, but here goes. I believe that I've had POTS/Dysautonomia since birth and I've always noticed that when I'm under great amounts of stress, I get a little, shall we say "off". A little more paranoid, a little more anxious and yes, even bordering on what, I would call, Psychotic. Case in point, I just got back from a vacation in the mountains of Colorado (I live in Denver, so not a long journey at all), but, I still had huge anxiety while I was there and then when I came back (just this last Saturday) my mind was racing and I had this horrible image in my head that I couldn't shake (it's too awful to even share) but needless to say, it scared me. I had just started on a Beta Blocker right before I left for the trip and if you read my posts about that, you'll see, that for me, it might just be the "drug" and how it effects my system, personally. I hadn't slept in nearly a week and I was emotional to say the least. I'm not sure about "developing POTS" AFTER an event like that, though. I'm sorry that I can't really help you. I do know, that for my entire life, I've had moments when I truly questioned my own sanity and have felt like I was holding it together by a thread. I've learned that that can merely be the chemical imbalance that we all have in our bodies, ie. autonomic system being off kilter. Although, knowing that and FEELING it, are two different things. I hope that this made some sense, I'm having a bad day today and can't seem to get it together, sorry!!! Good luck on your journey!!! Bec

Does anyone know of any on going research study on MVPS/POTS/VEDS (any of these)??? I need to find a place where I only have to pay to get there and back, etc. I need the testing, evaluation (and hopefully DX) to be free or very low cost. I'm just plain out of money. Period. I'm not proud of it, but it's true. I can't find a single doc here that's worth their salt or that knows (or wants to know) anything about any sort of Dysautonomia. I can't keep going this way. I need some help. I need to know if it's the hyperadregenic kind, too, because I have so many weird symptoms (on top of the already "weird" symptoms). I can't get anyone here to even consider the fact that I've got multiple systems involved or that I'm not just some fat, out a shape, lazy, crazy, hypocondriac woman!!!!! I can't take it anymore, truly. I did get a phone number from this forum for someone (somewhat) local, in Colorado Springs and I will go ahead and give them a call, but I'm not very confident that it will go anywhere. I guess, I'm to the point where I'm just ready to go for it and be put through the ringer one more time, for as long as it takes, and just be done with it!!! I've read on here (from a while back) that the "Alabama" site did their testing, etc. for free. All they had to pay for was the trip. Is that common or rare or unheard of or what? Any suggestions would be great........thanks!! Bec

Sorry, I know that I'm late getting to this one, but I've been on vacation. Did they test you for Myasthenia Gravis? That is more of a double visiion issue. That was one of the problems they had with DX me with MG. I never had true DV. I have, what they in the MG world, call ghosting. It's a "type" of DV, I suppose. Anyway, POTS and MG have many of the same symptoms and are often MIS-diagnosed as the other one. I just wanted to make sure that you had a complete work up, since you didn't really say how that whole process went!! I became quite ill overnight as well. I've had POTS symptoms for years, but no one ever connected the dots, until now. I could feel myself getting sick last June (2005) and I was EXTREMELY ill for the next 7 months. I was in and out of the hospital and was told that I have Myasthenia Gravis. Then, they treated me for MG and THEN they ran some more tests to "prove" that I indeed had it. Lo and behold, now I'm being told that I DON'T have it. Who knows, aye??? I think that the dysautonomia explains all of my sypmtoms, whereas MG only explained about 50% of them. Anyway, my point is this, yes, I did get much worse with a viral infection, but in hindsight, I've been ill for a long time. It just got like a thousand times worse with the virus. Does this answer your question at all, or am I still too sleep deprived?? LOL Bec