songcanary

Oh, I can so relate. When I was really nauseated I took some Phenergan or Zofran and it helped enough that I could get more fluids. For some reason I could take more with a straw so I did that, too. But when I started on doxepin the nausea really got better so maybe you could ask her doctor if her meds need to be re-evaluated? Nausea is torture and I hope she can get through this rough patch soon.

Holy Cow! That article was so entertaining I felt like I was there! Seriously, I am very glad to know that your hubby is on the mend and that Mack is well. Golly, I hope you all have a nice breather after all that. So glad to see you back Julie, I missed you

Oh yes, I can relate. My hubby was with me in the grocery store a few months ago and I was away from the cart to pick up a few things down the aisle. So I get them and start wheeling away and got all the way to the meats and realized I had taken someone else's cart! The cart's poor owner was wandering around looking for it when I realized I had the thing. Now, what I didn't tell my husband was that the exact same thing happened to me a month before that! In the same store!!! So forgive yourself because you've got a lot of company. These stories are making me laugh

Caterpilly, My recipe isn't too exciting I must confess. It's just one teaspoon of iodized sea salt in 2L tap water. Plus, I drink one bottle of coconut water in the morning for the potassium. The brand is Taste Nirvana and it's good because there is no aftertaste; it comes in a glass bottle. Plus, they use young coconuts so it isn't bitter.

Hi, I have fibro and just recently started low dose naltrexone, which is helping quite a bit. I also take doxepin and magnesium at night. Have had three deep tissue massages recently and they were very helpful as well. I also practice yoga in a class three times a week.

I don't tolerate the sugar free stuff either. If you can drink Gatorade, maybe you could add extra salt? I make my own drink from scratch, I can't even tolerate Gatorade LOL! There is one I have used called Recharge which is sweetened with fruit juice and is all natural. It's pretty good. I get it at the health food store.

I just started this a little over three weeks ago and it is AWESOME. It was prescribed by my fibro doctor. Cymbalta made me nauseous and Fibrocare caused nausea and bloodshot eyes. I put off starting it for six months because I was afraid of side effects. The day after my first dose I felt jittery and I thought Oh no here we go again. But the second day I felt fine and every day since I have felt fine. My lightheadedness is all but gone and my energy and pain levels have greatly improved, even in this short time. I am thrilled with this med! Even though it wasn't prescribed for dysautonomia, it is making me feel better over all, and at this point you couldn't pry it out of my hands.

Thanks so much for this, it is quite interesting. I have cervical stenosis diagnosed by MRI a few years ago. Now I am wondering if it is contributing to my symptoms. I love this type of doctor, captivating and not afraid to entertain out of the box ideas. Good stuff!

Angelika, if it were me, I wouldn't try to eat anything just yet. Just fluids until the diarrhea slows down. Can you tolerate coconut water? It has good electrolytes. I would try something like that rather than plain water if you can. Or maybe a sports drink. Also, when I was sick, drinking through a straw was easier for some reason and I could get more down that way. I hope you feel better soon!

Thank you Lizababy and Chaos for that great info. Will use it this weekend as I can't attend class today, coincidentally.

I think yoga is one of the most helpful things I have done since diagnosis. If I had known, I would have started decades ago. Last year I started out in a class at the local wellness center. There were many, many times where I barely got seated and had to leave; I had nausea and felt lightheaded. It was a real pain to drive there and go back home. But I kept trying and now I can do over an hour of vinyasa flow. I go three times a week. I also attend the power yoga class but modify it because I can't handle that yet. Too much up and down for me. Yoga also really helps my fibromyalgia as an added bonus. My legs are much stronger and I think it helps with the venous return. I love it. I would like suggestions on DVDs as well. I have a couple but they are not as good as the class I take.

I was first a medical assistant, then spent 15 years as a veterinary technician. I miss that job every waking hour.

Oh, sympathy being sent your way! Bless you for retaining your sense of humor during this rough patch. I am wondering if when the antibiotics finally kick in (can take up to three days) you will regain your BP. I do hope so. Last year my husband went through the same thing. He put off going to the doctor and ended up with pneumonia which landed him in the hospital and it took him many weeks to completely recover. So I hope with rest you will do the same. At least you desire a change of scenery--that in itself is a sign of healing! Sorry, can't offer any advice on the Florinef, I'm not on that--yet. Do you have compression hose perhaps? Take special care.

I wonder if hospital Social Services would not only check in on him, but you as well. Perhaps you could explain your condition so they know you are fragile. I only say this because I am the same way, I tend to buckle under stress since my diagnosis. It might be comforting for you to know there is someone in the wings, even if you end up not needing them. Wishing you well

Angelika, I have spent my entire life thinking that I too, am odd. And that led me to ignoring symptoms that were actually very relevant. So I hope you don't really feel that way. We can't help it that doctors aren't always on top of their games! Just had to say that

I have found that all my friends are true. I never doubted them, but this illness has confirmed that they all really care. Chips and pickles, bring 'em on I love this thread and never would have seen it if it weren't for dysautonomia!

Hi Brassmuse! I was diagnosed by her last year after my TTT. She is extremely busy and likes concise answers to her questions, so be prepared for that. At the time I was so relieved to get a dx of orthostatic hypotension, I didn't inquire in detail about the exact cause, but I am going back in September and plan to ask more about it then. She did prescribe compression hose and to continue fluids/salt. She is very kind but you don't get a whole lot of time for chit chat. But she really knows her stuff. I do hope you get some answers; best of luck

Tuesday, I'm in the same boat. I plan to ask Dr. Fouad the exact same question when I see her in September. I would love to have a neatly wrapped explanation complete with a bow on top!

My allergist is very aware of masto. My tryptase was 20, normal. So it has been ruled out. It is hard to say when I started with the dys because I have had on and off symptoms since childhood, but didn't get really bad with lightheadedness and nauseous until 2007. It came on gradually. But I did go off doxepin for a while in 2006 (was taking it for fibro) and immediately had unbearable itching which was torture. Long story short, it turned out to be food allergies. I had both skin prick testing and oral challenge testing. The oral challenge turned out to be the most revealing and I am now taking oral food drops for 11 foods and they are the only reason I can keep weight on. The allergy testing was not dangerous at all, it is easy. If you do have a bad reaction they are fully prepared to treat you. I am so glad I had this; I had been having face flushing and itching and nausea for decades! Much better now.

It is a roller coaster trying to figure out food allergies. I thought I was going to go nuts when I was in the thick of it. I am pretty stabilized now, and I do believe that once my body got calmed down, avoiding too much histamine is important. Like you say, there is probably a threshhold that each person can tolerate. Good for you to keep up the quest. Your list of safe foods isn't too bad. At one time I existed on peanut butter and applesauce!

Hmmm. Two thoughts come to mind: Pork is naturally high in histamine, and as if that weren't bad enough, leftover meat of any type is a supposed no-no because it gathers histamine the longer it is left. Can't say that's your issue, but you never know. We can't win lol!

What was the second food you ate? I am food allergy QUEEN LOL!!

Now you can rest that tummy! So glad to hear that you have closed the book on that stressful time in your life. And isn't it interesting that you ended up talking with people other than those you thought? Life sure does throw curveballs sometimes. I am the same way with the GI issues, I have so many. If I am feeling halfway decent and indulge myself (knowingly or otherwise) I pay big time. It seems like we can't get away with anything!

Wow, it must be a great relief to have a plan written down that you can actually follow. I hope K continues to feel better!

Thanks for the tip about the frog togs. I have never heard of them, and I think they sound great!