songcanary

I responded with 7+, but I've actually lost count. That was before I found out I am allergic to sulfites. Since then I haven't had any, and that's been 20 years now. Thank goodness!

Absolutely thrilled for you to have found such a kind doctor. Please keep us posted on your progress!

That's very sweet. You are such a kind soul. We got lucky in Ohio and have very strong winds but no storms. Take care BellaMia .

This happened to me last year when my hubby was hospitalized for pneumonia. I was OK for 24 hrs but then got so weak I could only visit him in the morning and even then I sat in the chair with ice on my neck. It was hideous. I couldn't eat. I got better in about a week. Hopefully time will help you, too. I begged him NEVER to get sick again!

I like his analogy using the computer, I never thought of it that way! I don't have POTS but I can tell you that two years ago I was so ill from dysautonomia that I didn't know if I'd wake up the next day. Now, after meds and salt/fluid loading I am working again very part time and occasionally have no symptoms at all. I am very careful to pace myself, however, and my 'recovery' is a painfully slow process but I am so grateful for it in any fashion. To be honest, I do still live in fear of a relapse, mostly because my illness was so traumatic for me.

I hope you start feeling better. I realize not everyone does, but there is always hope. Always. Welcome and best wishes.

Tennille,

I had terrible TMJ many years ago and speech therapy cured it. It took a long time but I had to retrain myself to relax my tongue and I also had a tongue thrust which even was undetectable by my dentist I hid it so well. I had braces three times, once as a teen and twice as an adult. In my case it was caused by stress. I think every problem in my life was caused by stress! Anyway, try to stay aware of how you place your tongue; it should rest in the middle of the roof of your mouth. That way your jaw muscles can stay relaxed. Hope this helps you.

I notice that you do yoga. In my case, I think that is what type of exercise that has helped me the most. I was very fit over all before getting sick, but strengthening my legs has been very beneficial. Now I take a yoga class three times a week, and I've just recently started back on the elliptical, yay! However, I was way too weak and nauseous to do that, or anything, before starting doxepin and forcing fluids. So I would have to say for me it was the combo. The meds helped me START the exercise and the exercise has kept me improving. I don't have POTS, though, so maybe that's a factor?

I am so happy to hear your success story, and the fact that it took eight years is inspiring. It is kind of you to write because we all need that encouragement. Best wishes and continued good health to you!

Thanks Sara, this is great info. I need to keep a running list of all the great suggestions on this site. My memory is so bad that I think I'll remember but I don't! Nice of you to post this.

Thanks, very nice descriptions. I printed it. I'm trying to understand all this better before my EP follow up next month.

Puppylove,

I have terrible insomnia also. I struggle with the intrusive thoughts as well. I do have Ambien, but I use it very sparingly, 5 mg. maybe once or twice a week because I don't want to become dependent. I am very sensitive to drugs but I can tolerate this med well.

I like the above suggestions very much and I am going to try them too. I think it's always better to train the mind rather than use drugs but it takes a lot of practice. But totally worth it. Wishing you good sleep!

Yes, Alicia. I understand this. It took me a few years to find some safe foods but it was very hard to isolate them because reactions are sometimes very delayed. I do take food drops and they help quite a bit. Have you ever tried that? They are the only reason I am eating enough to sustain my weight right now. Before I started those, I was on a rotation diet and it did seem to help, too. Even so, I usually have a few hives from something or another, and the digestive issues complicate things as well.

I also keep a detailed food diary and have for years now. It's just part of my routine. It has been helpful in finding safe/trigger foods so I could formulate some sort of diet. I know how you feel and I often wonder if it's part of the dysautonomia, too. Honestly, I don't think doctors know the answer to that yet because food allergies seem to remain a mystery. I would LOVE to know what is causing this and get rid of it!

I was on this for six months for high cortisol. It did not help in any way that I could notice.

For me, trying new meds is always a nightmare because I am very prone to side effects. I am so glad you are OK! I hope there is something else that will help you.

Wow, are you willing to do that? If you are really certain it's from the med, I wouldn't take it again, myself. Unless you could possibly have food allergies which can totally complicate things! Your body is trying to warn you so I would be careful and have the Benedryl handy if you do decide to try it again.

I could not tolerate Cymbalta. It gave me horrible nausea within just a few days so I stopped at that point.

Hi Natalynn22,

I live somewhat close to Cleveland, Bath Twp outside of Akron to be exact. My doctor is at the Cleveland Clinic. I don't officially have POTS, I have orthostatic hypotension but often my HR does climb, just not high enough for POTS.

Anytime you want to chat feel free to PM me. Hope you are having a good day!

Marsha

Pretty much same as Chaos. I googled my symptoms and learned a lot, but it took awhile. It was even more confusing because I had hypothyroidism, ferritin deficiency, fibromyalgia and dysautonomia all at the same time. My doctor proved to be worthless so I was clearly on my own. It was a very bad time. Thank goodness for the internet and this forum to say the very least!

Hi w_d_l_s_,

Love your comment. Because I grew up in a 'low sodium' household too, and then married a hypertensive guy. So when my doctor found out I had NEVER added salt to my diet, you should have seen his face. And mine too because I realized I could have been feeling better a long time ago. And I was just trying to eat healthfully...go figure.

Yay!!!

That's really sweet. I hear you about the insomnia; maybe you and the puppy can comfort each other! Have fun .

Cleveland Clinic main campus does QSART. I had mine there just a few months ago.

The only thing that helps me is prevention. I wear socks and even gloves when other folks are in T shirts and flip flops. My rheumatologist concurred and did not recommend any drug therapy. Maybe others have better solutions. I just try to keep from getting cold in the first place. It does not do a thing for fashion!

Katybug,

Great explanation. I couldn't agree more. Too bad vets can't dx and treat humans. We'd probably all feel better! That's one of the reasons I miss vet work so much--I picked up a lot of great info just by listening and asking questions.

Julie,

Your Viagra comment? I hear that BIG TIME. I mean, seriously...

Whenever my temp got that low, I always felt shaking cold. It happened nearly every day before I got diagnosed. I don't know why your son would feel warm with a temp like that. I wish I could explain it.

A great veterinarian is a great diagnostician. Their patients can't talk. They must interpret the clinical signs and lab data to make a diagnosis. If they're lucky, the owners are hip and provide a good history, but that's not always the case.

I always marvel at how vets diagnose problems. It really does take skill and paying very close attention to the patient (imagine that!). I posted awhile back that I was talking to a friend of mine who is a specialist veterinary internist, and she told me that dysautonomia is SO HARD to diagnose. She said in her practice cats usually present with dilated pupils.