Clairefmartin

I love this article too - its actually the first one i read when a doctor said "dysautonomia" to me as a possibility. Thanks for posting it!

I am printing this post and brining it to UVA to show my neuro there, someone needs to do some research on this or something. Maybe he'll know what it is. I'll let you all know

Me too me too! I have been feeling so much better now that I'm on meds in every area except this! I had a horrible night with it last night, mine is mostly in my upper body and head, and its the vibrating/buzzing/electrical feeling, and happens most when I am really tired or going to sleep. I also get this falling senstation, and feeling like I can't breath, and this is all when falling asleep so I'm half conscious. It is scary every time. I had an EEG and it said all was normal except when I went to sleep I went straight into sleep stage 5 brain patterns instead of the normal sleep stage 1. I am getting a full on sleep study in a few weeks cause its been a consistant problem. I take Ativan to get rid of it, and it works really well. I know lots of people may have an issue with taking Benzos, but it is the only thing at this point that helps. My doctor said it makes sense, seizures are treated with Benzos, and if my nervous system is fried (buzzing), Ativan will calm it down. Anyways...always goood to hear others deal with this.

Thanks guys - I love reading positive updates from you all too - it gives me hope! I am still feeling really good, I just keep overdoing it and wearing myself out. The Toprol makes me tire easily, but I figure I can deal with that. I actually had a drink for the first time in months over the weekend, and it didn't make my heart race, I wa ssoooo happy. I hope I'm able to go out a bit and socialize this summer. We'll see. Aayways.....thanks again for all your kind words!

hello all, just wanted to post a positive update on my condition - the last month has been great! i think we finally found the right combo of meds, and i have been almost totally back to normal. i am working out on the eliptical machine in the gym (i'll be adding weights next week), gardening, driving, socializing -- it feels like i have my life back i was really depressed from being stuck in bed and indoors, and home from work. I really like being home from work now that i feel better - lots more time to do the things i enjoy! anyways, hope everyone is doing well....just wanted to post soemthing upbeat

congrats! it was a huge relief to just be taken seriously for me...now you can move on with treatment. all the best!

I do pilates once in a while, and love it. I took someone's advise from this forum and bought "the complete pilates for everyone" and really like it, great instructions and its mostly floor exercises, and it has all levels of difficulty. My only tip would be to go at your own pace with the position changes, and if you need to, stay on the mat and skip and exercise or two. Good luck...let us know how it goes!

That is wondeful - congrats on the scholarship! What are you studying by the way?? Just curious.

Have you applied for SSDI? You are young and probably have a good chance of getting it from what I understand, especially if you lose your job due to your disability. Good luck - I'm so sorry you have to go through this

Hi Melissa, wow -I didn't realize it was that bad...sorry about that! I can't imagine dealing with it taking that long for stomach emptying. I have never heard of that severe of motility issues from Celiac either, my mistake. Hope you find out whats going on soon - Good luck! LOL - I agree - does that mean it will taste like "booty"? Ewwww!! (sorry to be gross)

I was wondering what your episode consisted of - I was in the ER a few weeks ago after a bad episode of my own, and my potassium came up low. I had started taking Florinef a few days earlier (which I now know depleats K), and I was SOB, my whole body fell asleep and was tingling, and I couldn't sit up without seeing spots. Just wanted to compare issues - I was tested this past week for my K levels, but in the mean time have been eating extra bannanas and strwberries. Thanks! FYI http://www.lifeclinic.com/focus/nutrition/potassium.asp

Just wanted to say welcome - and hang in there - most of us have been told its "psychological" when it's not. Good luck!

Wow lots of great suggestions in this thread Emily - the Chebe bread comes in a few different forms - you can make biscuits (my favorite - make sure to add cheese if you can tolerate it), pizza crust, cinnamin rolls, and a few others. The mix package has a few options for each and very easy instructions. They are sooooo good! I am upset cause I have been getting itchy when eating some of the the gluten free mixes, I think its tapioca of some kind doing it, so I've had to lay off the Chebe for the time being - I miss it! Melissa - if you are having motility issues and you tested positive for the anibodies, it is probably the gluten causing it. Check out Celiac.org and read about the issues with testing, the markers and biopsies often come back negative even though a person is really positive. I have read some of your other posts and your symptoms are similar to what mine were, it took a few weeks being off gluten before I felt better, and then the difference was amazing! I kept eating things with hidden gluten accidentally, like lunch meats and some stuff with "modified food starch". Anyways......as Alton Brown from the Food Network says "Good Eats!" (i love him)

Lol....my husband is from Germany and gives me that same look sometimes I actually didn't get my blood tested for the marker, I had an endoscopy that came back negative for Celiac. I was not willing to start eating gluten again to get the blood test. I feel great when I don't eat gluten, and it hurts when I do (along with maltodextrin), so my gastro said to just assume I have a gluten intolerance. I don't have any of the autoimmune diseases associated with Celiac, so I dont call myself a Celiac (which is an autoimmune disease), just gluten intolerant.

Hi Emily! Here are some of the other brands I love - Pacific organic soups - they have a tomato pepper basil flavor that has a really high sodium content so it does double duty I get these through our ecommerce business, not sure if they are in stores. Also there are these apple pork sausages I found at the grocery store (in the organic section) that were gluten free and were soooo good, I forgot the name though. Pamela's mixes are excellent too- thats what I use to make brownies and cakes (once in a while I need a sugar fix - though I pay for it later!). I have brought these to social events and no one noticed they were gluten free, they really taste great. Cereal I LOVE is called Puffins -Honey flavor- the others aren't gluten free due to the oats in them - they are great with or without milk and are organic as well. Most grocery stores with an organic section carry stuff that is labeled "gluten free", but alot of it tastes like crap, its been a trial and error thing for me. Hope that helps - thanks for your suggestions too, I am always looking for new stuff to try. Ciao!

Just a sidenote - B12 is water soluble, so you can't get too much - your body will flush whatever it doesn't need. My hubby and I market organic suppliments and an energy drink with 4900% B12 used for athletic training (and everyday energy), so we had to attend classes on this stuff. Hope that helps!

Thanks !! I never thought of pickles and olives....I am going to ask my doctor how much I should be eating, but I have a feeling he has no clue. I am seriously considering Vandy (they asked me to come this summer) so I can get clearer instructions (like for salt!) and maybe find out more about my individual case of POTS. Thanks again,

Hi everyone, My doctor failed to tell me that for Florinef to work you need to increase salt (Bonnie from Vandy told me on the phone) as well as liquids. I was wondering how much salt is recommended, can't find any info online so far. I also was wondering what foods/drinks you guys recommend that are high in salt. I been relying on V8, and am over it Thanks! ps- I am gluten intolerant which makes this harder - can't eat boullion or salty crackers/breads

Thankfully I am back to functioning well, and am doing the following to hopefully continue this trend: -Take my Florinef in the AM before getting out of bed, and then drink a big glass of water and V8. V8 throughout the day (due to high salt) seems to help me stay hydrated and not dizzy. -When doing housework or gardening, take frequent breaks -take naps/lay down when I get worn out -Take beta blocker at night and more Florinef -Drink lots before bed I have actually been feeling so good lately its been a chore to not overdo it, I was so excited to feel good the first few days I wanted to run around the block and clean my house from top to bottom. I have been venturing out and increasing my daily activity slowly though, and it has worked so far. My new meds really seem to be working well, I think we finally found the right combo and dosage. Thank God !! Good luck!

I can't eat gluten -and can give you lots of recommendations! Actually if you go off the gluten and feel better, you probably don't need the endoscopy, and without eating the gluten it may come up negative anyways. I love www. glutenfreepantry.com, and this stuff called chebe bread. It is made of tapioca, and is better than regular bread, my family is hooked. Another great substitute is rice pasta called Tinkyada, it tastes like regular pasta and doesn't get mushy. There are many more, PM me if you'd like other brands/books/etc.. Most brand websites say what products are gluten free, I would check one of the lists at Celiac.org for hidden sources of gluten though, thats what got me sick when I first went off it. Random things like envelope glue and tic tacs have gluten in them. Good luck - it takes some getting used to, but you will feel so much better you won;t even miss the processed food. You'll also loose alot of weight!

Thanks! I did reduce the Florinef to .05 mg twice a day, and am taking Toprol 25 mg and feel much much better! I went out by myself today for the first time in a few weeks and bought some more flowers for my garden, it was great. Thanks again for letting me vent, hope you are all doing well

I am curious about this drug too- I have anxiety and now reactive depresison issues, and like you I react horribly to SSRIs. Let me know how it goes - I have been looking for something low dose to take daily to help instead of relying on Ativan. Good luck!

I just recently started florinef too - its been about 2 weeks, and when I was in the ER they said my potassium was a little low - yet another thing my doctor failed to tell me when I started taking it, so I also increased my potassium by eating an extra banana a day Are you taking a suppliment or just eating more food with potassium?? My doctor also said nothing abot salt intake - did they tell you to increase/decrease salt? Glad you are feeling better and can drive, I am still working up the nerve!

Hi everyone, This is the first time I've been on the computer in a week because I couldn't make it upstairs. It's been a rough week, I went to the ER last Wed because I was having touble breathing, and my whole body fell asleep - including my face and chest! I couldn't lift my head without seeing spots, and laid there for an hour feeling like this, and finally called to go the ER. They gave me fluids, which made me feel better (3 bags later). I was not retaining any fluids, everything I drank went right through me. I thought this was weird, I started Florinef 2 weeks ago, and felt great for the first few days, except for the bloating, but I thought it was suppose to help me retain fluids. I did start my period that day, so that may have contributed, but never has been an issue before. After the first few days of Florinef, I started having more tachy episodes and was really short of breath, and eating causes me to feel bloated to the point were I feel SOB, and my hands and face fall asleep. After the ER, my doctor added a beta blocker called ZeBeta, he said to stay on the current Florinef dose and see how I feel. So that started my second round of feeling horrible - I was so dizzy after taking it and it made me extremely panicked - I had a continuous panic attack for most of the night. I took the Florinef the next morning as scheduled, and that made things worse again. I then felt so bad that I wasn't up and out of bed except to quickly go to the bathroom or refill my water for the next few days. It stunk. I was so weak and out of breath I could barely move around, and my heart was racing every morning when I woke up. I called my doctor and told them I was not taking zebeta again, so they put me back on a low doese of Toprol, which I started last night. I felt pretty good last night and this morning, even when I took the Florinef. My only complaint is that I feel all this pressure in my head, and have for the last few days....I don't have a headache (yesterday was my first day without one in a week), but I keep having to clear my ears and my head feels very funny like someone is pulling on my scalp. I have sinus problems anyways, so I dont know if its my sinuses or the Florinef. I know I do fine with Toprol (except for it drops my BP), I was on it for two years before. Should I be concerned with this head feeling?? My nurse and Dr said the tachy feeling and other issues don't normally happen with Florinef, and weren't very open minded about it. I think I will ask to cut the dose down. I can't eat alot or drink alot during the day without getting severely bloated, then at night I don't retain any fluids. I take .1 mg in the mornings - maybe I could take .05 in the AM and PM. Anyways - any imput or thoughts about all this would be appreciated - my doctor is making me nervous. I am going to go see the neuro at UVA who treats POTS specifically to get a second opinion about everything, my parents were nice enough to offer to pay even though insurance won't cover the office visit. I also got asked to come to Vandy, but don't know if I can handle the med trials. The nurse from Vandy gave me more useful advise about Florinef than my doctor has! It made me want to seek a second opinion from someone more knowlegeable. Anyways......sorry this is so long, it has been a long uncomfortable few weeks and I needed to vent. Thanks!

Thanks for the info...I searched it on here and didn't see that much about it, I guess its a newer beta blocker? Guess I'll have to wait and see how I do.