erickamcc0523

I don't know for sure if I have EDS.. but I'm going to a geneticist next week since I think that I might have it. I'm hypermoble and I have some really funky looking scars so, because of that, I have suspected that I have it for awhile... Since I've been diagnosed with POTS, I'm even more sure. To your questions: 1. There have been many times (too numerous to count) that I have injured myself without even remember how... I also get unexplained bruises, especially in my thighs. I don't remember hitting anything or bumping up against anything. I suspect that a vein just bursts, because before the bruise even forms, in the same spot, it'll be hot and itchy (I try not to scratch, as that makes the itching worse, actually)... the next day, I'll have a real shiner there. There have been many joint injuries just from jumping from a 2 foot porch... or the 4 years I was in marching band, I had to constantly wear a knee brace, because that's such a weak joint for me. Sometimes, when I'm just walking, my ankle will just sublux with no warning... it hurts like **** for about 5 minutes, and I have to sit down, because the pain makes me not be able to walk, and the pain also ramps up my POTS, so I get really lightheaded when I am in severe pain. 2. As for dealing with the embarassment... I have a self-depricating form of humor that works well in my advantage... when I was on a cane late last year, a close friend at my church kept calling me "peg-leg".. "I'm not peg-leg.. I'm gimpy!". If it's a stranger, I'll just say that I'm a klutz and they should go away before my klutz karma rubs off on them. If they are somewhat mean, or saying "you don't LOOK injured" (this also goes well with the "you don't LOOK sick" comments), I ask them where they got their medical license... For the most part, they won't have one and will say so, so I just tell them to quit practicing medicine without a licence and hobble away as best as I can. I'm sorry that you got so much teasing as a child... I was one of the clumsy children, too, so I got some of it too... Kids can be mean, very mean. It's been healing for me to tell some of this to my 10 and 8 year old niece and nephew (not too many details, just enough to make an example), and letting them know they have to be nice to everyone (that is, unless, the other person is mean to them, in which case they should just ignore them... and don't start fights, but finish them if the other person is spoiling for one) because they don't know how much they're hurting the other person's feeling and how much that other person might hold that within them the rest of their lives.

I've had to back off of the magnesium, because like with Milk of Magnesia... I've been having some, actually not so unplesant side effects (as I've been stopped up for awhile, if you know what I mean ), but it's been so much that I'm worried about being dehydrated. It happens after only one dose, so I'll try a half dose, or even a quarter dose. It's a shame, too, because I could tell a difference at night when I was having alot of the jerky movements and the muscle cramps (or whatever it is what make me feel like ants are crawling under my skin). Oh well... maybe I could work my way up to a full dose soon enough again.

I haven't been on an SSRI or SNRI since July of 2008 (I was on at least 2 with 3 more mood stabilizers thrown in the mix... I feel worse, though, on a bad POTS day than I did on all of those meds, though I guess I was feeling bad enough on the meds since I no longer take them). I have tried Klonapin, Lunesta, Ambien (both the original and the CR), Rozeram (which is basically prescription melatonin as best as I can tell from reading the physician information on it), benedryl (although benedryl actually hypes me up), chamomile tea... you name it, I've probably tried it. Some don't help at all, the others might help for a few days, but then the effects "wear off", and I'm back to where I was before. I know I have one, maybe two, more nights of good sleep before I have insomnia again. I'm trying not to focus on it, as it kind of depresses me. Oh well, at least I have a few days off from school right around then, so I hope to not crash and burn.

I've been trying magnesium the past few days, as I get alot of the restless leg syndrome all over my whole body (like my muscles are on the verge of tensing up... and occasionally, I'll have a myoclonic jerk). I've heard that extra magnesium is good for period cramps, and other muscle cramps. I've been on it for too few days to tell a difference, but I'll keep trying it for another week before I say it doesn't work.

I don't have 100% of the symptoms of EDS (my skin is pretty stretchy, but not as much as I've seen in photos), but there are so many other symptoms that I do have, including a 9/9 of the Beighton score and the ability to bring my arms from my front to my back and to the front again while holding my hands the whole time (think human jump rope). But, I guess the years of being sick, but being told that I was on WebMD too much or that it all was in my head is getting to me right now, and I'm half-way tempted to call and cancel the appointment.... but on the other hand, I want to know, because I know some sub-types of EDS can be suddenly fatal, much like Marfan's syndrome. Also, while it may be unlikely that I'll have children, if I should some day, I would want to know in case I could pass it on. Ugh... My emotions right now are on the same rollercoaster that POTS has me on! I hope Feb 4th will be here soon!!!!!

I haven't had any experience with Vanderbilt as far as POTS goes.... I was going to if I couldn't find any local help, but I have been blessed with finding the right cardiologist in Knoxville, TN, who diagnosed me with, and is treating me for POTS. I also know of a neurologist who is familiar with POTS here in Knoxville, too. If you are interested in information (I know it's a shorter drive to Knoxville), PM me, and I'll get it for you.

I just remembered that I can't stand on a dock at a lake or a river, because the combination of me being still, but the river moving.... well, I guess my brain feels like I should be moving, too... I'll get so dizzy I can hardly walk!

I have no ideas on how to help the brain fog or dizziness except using tons of sticky notes to help you remember what you need to remember.... or some other note taking system. I feel for you, because I've been having such horrible brain fog episodes myself, and I hope that yours get better ASAP! I'll keep you in my prayers.

So, here it is at 4:15 in the morning, and I have not slept a single moment!!! Yesterday afternoon, thank God, I crashed out on the couch for about 3 hours, so at least I'm not running on completely no sleep, but I have such a full day (well... it's just 2 classes and a dentist appointment, but very full for me) planned, and I am concerned that I won't be able to do a single thing (or if I attempt it, the attempt will be worthless since I won't be able to function so well). At least at the dentist appointment, if they're not killing me, I can nap a bit, but man!! I have been doing this for the past several years, and I'm just really agrivated by it right now. I know that within the next few days I will have at least 2 or 3 where I won't be able to get out of bed, or even really be awake.... and that's the cycle that I go through. Anyone else?

Metoprolol is the first bb that I've tried... actually I was just diagnosed with POTS officially just a little over 2 weeks ago. I've tried taking it different times of the day, but I still have the extreme exhaustion, and extreme insomnia (for about 3 days in a row, and then I'll just crash for 2 days). I am unsure when my next appointment is, but I know it's sometime the second week of Feb. If I'm feeling no better by then, I'll ask my cardiologist to change the med.

I was pretty consistant with my symptoms... pretty much yours to a T, but then I had knee surgery this past November, and everything has gone haywire. Some days are like pre-surgery, where I have a few fairly decent hours, but I have to do alot of resting in between activites.... other days, I can barely get out of bed to even use the bathroom or eat. Since I've been on metoprolol, I think that my symptoms have gotten somewhat worse, especially the pre-syncope. The meds works on the tachycardia, but aparently nothing else, so I feel even more faint when I stand.

You're welcome! I almost wanted to cry when I first read it... out of relief. Now, especially when I am having really bad cranial flatulence days, I can just hand someone the printout of this I have made and tell them to replace Lupus with POTS and they have an idea of what I'm going through on a day to day basis.

I have really become somewhat of a "religious nut" since I started getting very sick since my knee surgery... Being connected with the supernatural, and with the sufferings of Christ have helped me immensely. I lean on my friends, most of whom are Catholic. One friend in particular, especially when I feel like I'm doing nothing but complain (though he has never said that I complain, even when I complain about complaining), jokingly tells me to "offer it up", providing a laugh, and reminding me of my faith. Once, when speaking with my priest, and telling him how much I hated and really, really didn't want to be sick, he just pointed to a crucifix and told me that He didn't want to do that, either, but because of His love for humanity, He did so anyways. Being realistic helps.... I will be sick, positive attitude or not, but a positive attitude does help me deal and cope with them. Making jokes about my brain fogs ("Oh, there goes some more cranial flatulence!") and other most frustrating and debilitating symptoms helps, too. I now understand why most comedians come about that through personal tragedy. Today in Mass, my mouth was really dry, and since it was Latin Mass, the chalice was not offered, so when I received communion, I almost started choking on the Body of Christ. While this was happening, I was somewhat chuckling to myself (as much as I could through choking) that if I were to die then, what better way than by receiving the Eucharist. I halfway wondered, right as I got the host down, whether it would make me a martyr. That might not seem funny to some, but I was really cracking up inside.

I get this at times... usually in conjunction with a higher pule rate and just more POTS symptoms. I take meclizine when it become unbearable, but I have to lay down for a few hours after one, as it's in the same chemical family as phenergan and will make me majorly drowsy.

I actually can't remember how I found DINET, but I think that I was on wrongdiagnosis.com, and out of sheer serendipity, I found a post on their fourm about POTS... I followed the trail, and found this forum and website. I can't express in words (especially with a brain fog in full effect right now) just how glad and overjoyed I am to have found this site... I know the fact this exists, though, means that others are dealing with this illness, too. But for better or worse, I am glad to have you guys! I have a great in person support group, but none of them are sick like this, so they don't really understand. When I ask, "You know what I mean?" and they give me a blank stare, because they don't know what I mean. Here, the answer is, "Oh God, yes, I do, and I'm so sorry you have that, too!"

I don't know if anyone has read this, but this woman wrote this about her struggles with Lupus, and gives a really good explaination about the limited amount of energy Lupus gives, and how one has to plan their day..... I'm having severe brain fog right now, so I'll let this short story speak for me. But you don't look sick!! Just fyi, it's in PDF format.

Doctors can be real tools at times... and like the rest of you, I have encountered some jewels who are a disgrace to the good doctors that I know. Granted, I would rather see a doctor who knows what's wrong with me and will try to fix it, or at least improve my quality of life even if he has the personality of, say, House than someone who was overfriendly and dumb as a box of rocks... but a healthy balance between the two would be great. I most particularly don't like GI's, simply because I suffered greatly for 5 long years with gallbladder disease, unknown at that time. I only knew that my stomach hurt like **** and I was puking almost all of the time. They did a CT scan, an ultra sound, scoped me out.... and nothing else. My gallbladder was (looked) normal, there was nothing physically wrong with me. In this time period, I saw at least 3 different GI's, and after the tests, I was told that I needed to cut back on stress and that the cause of my nausea and vomiting was a stress reaction (aka, you're crazy lady.. leave me alone!). This happened over a 3 year period, and for the next 2 years, I wouldn't see a doctor, or go to the hospital, until one night, I literally spent the whole night vomiting (eventually dry heaving) at least every 10 minutes, even after I had taken phenergan. After about 6 hours of this, I had a friend take me to the hospital, where I was given IV morphine and Zofran. I also had pancreatitis, though I was kind of accused of being bulimic at that time (it had been at least 2 years since I was then). After a few hours, I was was released. I drove to my parents house, somehow, about 40 minutes away, and started getting sick again. I drove to my GP, and she had me admitted to the hospital. During my stay, they did the other tests that had been performed already, with the addition of a HIDA scan. Well, whaddya know? My gallbladder isn't working and needs to be removed!! When I heard the news, I was happy, scared, and mostly pissed off. I was so tempted to have the surgical records sent to the GI docs who I tried to convince that my gallbladder wasn't working (yet told me, without thorough testing, that I was crazy). It was because of that bad experience that I didn't mention any of the other symptoms (the dizziness, fatigue, and everything that's related to POTS) to my GP until, again, they got unmanagable. I am just very glad and thankful this time that it took less than 2 weeks after telling her and being referred to a cardiologist that I have been diagnosed. I really like my cardiologist... he isn't exactly warm and fuzzy, but I can tell he's very caring, and moreover, he's very meticulous and careful, almost to the point of OCD (not that I mind at all) about examining me. He also is familiar with POTS, even though he doesn't claim to be an expert, he mentioned that he knew a few of the top POTS doctors in the country, and that he would consult with them if he should get stuck. He explained POTS to me thoroughly, but didn't talk over my head, nor was he patronizing. Although in his physical exam, he didn't hear the heart murmmer my GP wrote down that she heard, he still sent me to have an echocardiogram and doppler performed to just make sure everything was just fine. So, see... yes, there are "doctors" out there that aren't deserving of the title, who themselves need to be taught (the word doctor comes from the Latin word for teacher), and there are good and decent and caring doctors out there who, I think, more than make up for the sins of their collegues.

It feels strange saying congratulations on being diagnosed.... but I suppose that you would be sick regardless of a diagnosis. Congratulations on having a name for your condition and hopefully a treatment plan that can help manage your symptoms.

You'll have to scroll to the bottom 1/4 of this page, but there is a list of symptoms attributed to toxic mold. Here is another website that describes toxic mold exposure symptoms.. I don't know (and it doesn't seem to be any information) if that the mold could have set off the POTS and other dysautonomia, but I can say for certain that exposure to it would exaserbate symptoms. Lieze, I would come down hard on the testing company about getting the results. If they don't seem to want to help, I would recommend that you try to find another company, as I wouldn't even want to work with that company after that... if they are so inefficient about giving results, who knows about the quality of their clean-up.

You have a pineal cyst as well? I was found to have one about 2 years ago (when my migraines were at their worst) that was 2 cm large. Have you read or heard anything where this might be related to other symptoms... I know those with an enlarged one, because it can affect melatonin levels, can have sleep disturbances and migraines.

I am so sorry that you're going through this... I, too, have huge knots at the juncture of where my neck meets my shoulders, especially on my left side. I also have to constantly pop my neck for any relief. I know that heavy duty narcotics would take care of the pain, but they would also worsen the dysautonomic symptoms, so I just try to deal with it as best as I can with heat and occasional massage (most of the times it hurts too much to even touch). Sometimes, if I have exerted myself too much it hurts even more, and the pain will actually shoot down my arm.

I haven't tried one recently (since I have weaned myself to 1-2 cups of coffee a week, since I started not being able to tolerate caffeine), but when I did drink them all of the time, I wasn't jittery or had too bad tachycardia (it went up maybe 10 bpm higher than normal). I was energetic and my mental function was a bit better (just plain coffee will hype me up and I seem to get more stupid). If you try one, I would drink maybe a half, or even a fourth of the bottle and wait to see how it makes you feel before you try more.

I had knee surgery this past November, before I had a diagnosis. Because I was having so many knee problems, I wasn't very active before surgery, and because it hurt and my knee was so unstable afterwards I had trouble being active afterwards, too. I did have an increase in my symptoms, but I'm sure if I knew about the importance of staying hydrated and keeping electrolytes balanced, I probably wouldn't have had such a difficult time with the postural tachycardia and lightheadedness. I was able to keep my pain fairly well controlled with not taking as much pain medicine as I was prescribed by using ice packs and breathing exercises (I've had trouble with shortness of breath, especially with the percocet). It did take me longer to recover from this surgery than the one I had on my other knee back in Dec of 08, because the POTS was more active this last time around, but it wasn't a horrible recovery.

I started smoking again about 3 months ago, and that's when I noticed my symptoms getting some better. I was using an e-cigarette (basically it's a cartridge that holds liquid nicotine, an atomizer that turns the liquid into a vapor with a battery), but it wasn't helping as much as real smokes. I want to use the e-cig again, mainly because, though I'm sure it's not completely healthy, it has to be better than real cigarettes. Plus, the maintence cost is much less in the long run than real cigarettes. One downside to the e-cig, at least for me right now, is that I have a too high nicotine concentration, and when I inhale, it's almost like it paralyzes my lungs and I wheeze like crazy and it's bad enough that I'm short of breath. I do have these POTs "episodes", too, and I'm sorry that you're experiencing them full time. How quickly or slowly did you come off of the Lexapro? I ask, because though I haven't been on Lexapro (though I have been on many different anti-depressants in my life), this reminds me of the side effects of withdrawing from a few other anti-depressants.

I looked for the Nuun tablets, but I couldn't find them at two different GNC's or at the natural health food store... the closest I could find was the electrolyte tablets I mentioned in an earlier post. I am going to Knoxville today, so I'll see if I can't find them at this outdoor sporting store that caters to hikers, canoers, and other outdoor extreme sports. There is also another bigger natural health food store in Knoxville. I hope to buy them in person, as I don't like buying things over the internet, but I might do that if I can't find them there.