lmbutare

i have graves disease treated with radioactive iodine too. with so many of us affected, makes you wonder about a connection, doesn't it? lbs

I try to eat yogurt everyday and I also take lactobacillus supplements. I really think both have helped my digestion quite a bit (it's still nowhere near normal, but it's at least less uncomfortable). There are a ton of probiotics out there, but from what I've read you should shoot for a supplement that requires refrigeration and has 5-10 billion active cultures. I hope this helps you!

Congratulations!! It really takes a weight off of your shoulders. Even though it's not a lot of money (for me at least), it's nice to have them recognize that you really are sick and be able to pay for your meds at least! I don't know what I was approved for...I actually got a check before any kind of letter! Thats the government for ya... Congrats again! Great news. Lauren

I have it too. Mine used to be a lot worse, but I went through vestibular rehabilitation for my dizziness and that helped a lot...basically they give you exercises that significantly increase your dizziness and you eventually get accustomed to it and it decreases the dizziness overall. I didn't used to be able to walk in a straight line at all but after about 6 months of the rehab my balance got a lot better (it didn't make the dizziness go away by any means, but now I'm able to deal with it better). I'm not sure if you're having that kind of difficulty, but usually the nystagmus goes along with inner ear/balance issues...

I've never tried Repliva but I'll look into it b/c it's rough now on everything else. I'm definitely going to ask about the injections too b/c a little pain in the butt (haha I'm so clever ) would be worth it if I can avoid the other side effects. I'm still wondering exactly why I'm so anemic though b/c I actually eat well... It's always something with us, isn't it?? Lauren

I completely agree. This place is a haven and gives so much comfort and caring. If I have something that I'm concerned about, there is always someone there to help. It has made a big difference to me in feeling less "alone" in my bizarre illness. Thanks to everyone! Lauren

Really interesting theory. Thanks for sharing!

I take it for pain but haven't really noticed any difference in mood from it. It helps keep my pain at a semi-manageable level so I like having it available. It definitely can be addictive, but I think it partially depends on you...I've had days where my pain wasn't as bad and went for 12 hours without taking it even though I usually take it 3-4 times a day and I didn't notice any problems. I think that you have to judge for yourself as to whether or not you feel you are becoming dependent on it...if so, you probably should stop taking it sooner rather than later and try something else. Hope this is useful. Good luck! Lauren

Thanks so much for your replies. I had a feeling that I was pretty much stuck on these, but it's at least nice to hear that other people have been taking them for a really long time too! I had to stop taking the protonix a few months ago b/c my insurance company was denying coverage and trying to get me to take OTC drugs (typical) and it was like TORTURE to be off of it!! It's really the only drug that has ever helped with my reflux, so I'm going to keep on keeping on. As far as the iron goes, I'm on Niferex which is supposed to be the most gentle on your stomach and have been separating it as much as I can from drugs (I'm on thyroid drugs too and it really interferes with that), but it's been tough to handle. I may have to see about getting an injection of iron b/c I don't see how I can keep this up for 6-8 months... Once again, you guys have been wonderful and responsive and it's so nice to have other people that know what I'm going through! This group is a life saver. Lauren

I have been on protonix for reflux problems for almost 2 years, and it seems like it can't be the greatest idea in the world to be on it for that long. I'm wondering if anyone has been able to get off of drugs after long term use. I tried to reduce my dose, but my reflux returns so badly that I can't sleep or eat much. Does anyone have any suggestions on what to do? I'm also concerned b/c I have pretty bad iron deficiency anemia and it's possible that these drugs are adding to my iron absorption problems since I'm on a double dose ( but who knows). I'm trying to take oral iron supplements and it's just compounding all of my GI/digestion issues. I feel like no matter what I do I can't find a way to get my diet and digestion under control!! Any help would be greatly appreciated! Lauren

this is great to hear. i live on pedialyte and it would be nice to have some more options available!! Thanks so much for sharing this info with us. lauren

I have it too. I think quite a few of us have some kind of reflux problem. I have gotten a lot of help with Protonix but not with some of the other brands...

I was in a study for patients with chronic pain and was on lamictal at a super low dose and just had horrendous fatigue and disorientation with it. I couldn't get above 1/4 of the dose they wanted me on b/c of the drowsiness. Apparently that was unusual but I know that a lot of us have sensitivities to a lot of drugs...

I take Allegra 180 once a day and it doesn't seem to cause any problems for me...non-drowsy. Have to have a prescription for it, but your allergist might prescribe it for you. It seems like we all have different weird reactions to drugs though, so I hope it won't bother you...

Thanks to everyone for the congrats! It was quite a shock when I did get approved. For some reason I didn't have to get any doctor evaluations or the psychiatric evaluation, but it sounds like it can really help. I hope that the eval on Monday went well Susie!! Trish, I'm not sure about applying for disability with children...they can be really obnoxious about pushing into every part of your personal life, so I wouldn't put it past them... The website has some info about it, but it might be better to search on the internet about it. You also might want to consider talking to a lawyer about it, b/c your case will be more complicated than mine since i don't have children. I don't think they'll charge you anything just for the advice, b/c a lot of them get money once youre approved, but I'm not sure. GOOD LUCK to everyone who is applying! And don't give up hope even if you do get rejected the first time b/c a lot of people have to go through a few times before they get it. And thanks again for all of the support. Having this website and support group available is so great b/c it's so nice to know that we're not alone and not crazy! Please feel free to ask specific questions about the process, etc if you need advice... Love you guys! Lauren

Hi everyone! I guess I am officially one of the lucky ones that gets approved for disability. It was my first time applying and I didn't use a lawyer. I think that one of the main reasons that I was approved is because I went to the Mayo Clinic for diagnosis. I also waited 2 years from when I stopped working to apply for benefits b/c I didn't want to have to think that I would need them (it was depressing to me then)...not sure if that made a difference. Even though I had been sick for that long, they said that I had only been sick since I was diagnosed at the Mayo clinic, so they only counted me as disabled for 6 months. I also went through in a list what I was unable to do in a day, what I needed help with, etc. I also thought about all of the possible jobs that they might try to say I could do, and made sure to mention that I couldn't sit for long periods, stand for long, drive, use the computer for long, etc so I wouldn't be able to function in any job. I just turned 29 and got sick at 26. I have POTS and fibromyalgia/chronic fatigue, which may make a difference too. If any of you are applying and need some advice, feel free to ask. I've been fairly sick over the past few weeks (which is why I haven't been on the forum for a while), so it may take me a couple of days to get back to you but I definitely will! Good luck to everyone else who is applying! Best, Lauren

I got a seat cane from Magellan's that is really lightweight but can hold up to 250lbs. Pretty cheap too (under $30). I have another seat cane that is a lot heavier and tends to wear me out a lot more, so I've found that this one is pretty helpful. Try magellans.com and search for "sport seat". If you can't find it, let me know and I can try to give you more info. Good luck! Lauren

Thanks so much for your advice girls! I really didn't know the difference between the monophasic and triphasic, but now that you point it out it makes perfect sense. I will definitely pursue this with my doctor b/c even 4 periods a year would be wonderful compared with 12!

This might be on the sight somewhere, but I had some trouble finding it with my searches. I have found that I am absolutely miserable the week before and the week of my period, so half the month is destroyed by menstruation! I want to suppress it for a while to see if that helps, but I'm not sure what other people have found useful. I'm going to do what my doctor recommends, but I figured there were various options so I thought some of you might have suggestions on what worked best for you. Thanks so much for your help! I've been a bit down and out so I haven't been on the site for a while. Hope everyone is hanging in there. LBS

I agree...Zithromax has worked for me too, but I often have to take 2 Z packs instead of just one to get rid of the sinus infection completely. Levaquin works pretty well too in my opinion.

i haven't been able to work since i got sick 2.5 years ago...

I'm 28 and have had it for about 2 years. I don't know of a cause, but I think it was triggered after a cat bite that I had to be hospitalized for (major infection) since all my severe problems started right after that. I didn't actually get diagnosed with Pots until March of this year though so I've only been on drugs for it for 8 months or so. I definitely have had the constant dizziness the whole time though. And tons of other symptoms too! If you want to talk about a lot of specifics, feel free to PM me so I don't fill up your post too much with my stuff!

I'm dizzy and lightheaded constantly too and always have to hold on to walls etc and stumble like a drunk. i'm only able to go out for about 10 min max at a time, so I bought a wheelchair online so that I can go to the grocery store. but I still feel terrible and like i'm going to faint while i'm in the chair too but at least i'm sitting so I can't hurt myself as much! It was really depressing to get the chair, but in a way it has been really nice to at least have my own chair that I can take to stores instead of being at their mercy when I get there. Plus, any chair you get for yourself will be a lot more comfortable than those in stores. I try not to use it when I can, but if you are falling all the time like a drunk, you have to do what you can! Good luck and you're definitely not alone! Lauren

I had my GB removed last August. I had HORRIBLE pain in the right upper quadrant, worse with eating and ended up losing over 20lbs in about 2 months (i wasn't overweight). They made me go through all kinds of tests and really didn't want to take it out b/c they said I was atypical too. They finally did though, and it was the best thing I ever had done. The pain was gone the day after surgery for the first time in months (although the surgical pain was pretty unpleasant). I had "biliary dyskinesia"...there were no stones but the GB wasn't contracting properly... I wonder how many of us have that too? My HIDA scan was really low, so that would definitely be an important test before considering surgery. Good luck. Hope it goes away on its own and you don't have to have surgery!! Lauren

When I lived in DC I saw Russell Rothenberg who is an internist and rheumatologist. I only saw him twice but his exam was really thorough. I have no idea if he has any knowledge about POTS b/c I wasn't diagnosed when I saw him and then moved to NC so stopped seeing him. If you want to call his office to check on his dysautonomia knowledge, I'd be happy to look up his phone number for you. Let me know if you'd like it! Lauren