songcanary

Hi Caroline,

This is indeed a great site. I don't have POTS either, I have orthostatic hypotension, dx'd by TTT. I had trouble with nausea and weight loss before I started on doxepin. I have never been tested for gastroparesis, but who knows, I may have it as well. I do get lightheaded and it is so much worse right now since the weather got warm.

I have learned SO much on this site, I hope you do too. Welcome!

Nice tribute, Julie. It even gives ME hope, and I'm far from being a kid anymore. I really hope your son does well at college. He certainly deserves it.

Julie, I know you're not DX'ing. I like reading your posts because you always have good tidbits and I usually learn something. Thanks for your input.

Julie,

I know, isn't it crazy with the tryptase? Seems to be fussy So you are saying that doxepin by itself can treat MCAD? Now that makes me feel better because I really suspect that I have it, just no way right now to officially diagnose it. I do have a wonderful allergist who is hip to masto, but maybe not MCAD so much. He is very open minded, though. Maybe I'll pick his brain again one of these days.

Julie,

I take doxepin for fibromyalgia. It is supposed to help with sleep, but it really doesn't do a good job anymore. I only stay on it because of my food allergies. I know it helps blunt the hive reaction if I get blindsighted. I do take food drops for 11 foods so I don't starve!

I recently had my tryptase level checked and of course it is normal. I still suspect an MCAD component but right now I am doing pretty well so I'm just hanging tight.

Naomi,

Your comment was interesting to me because I was never 'sick' either until I quit Klonopin 0.5 and doxepin 30 cold turkey after having been on them for 12 years for fibro. I just wasn't doing well at the time and so I got impatient and dumped them both.

My dysautonomia symptoms started six months later (that I finally noticed lol). I have since wondered whether I caused my own illness because of that. I am now back on doxepin and love it, but not Klonopin.

Just tried it last week. Love it. And the potassium is impressive. I hope it helps me, my potassium has always been on the low side.

Angelika,

I was at Cleveland Clinic too and I didn't have the blood volume test because of my iodine allergy. But my summary says that I have hyperkinetic circulation as well. Can you tell me what that means exactly? I haven't seen my EP since the test. Is it the same as hyperadrenergic?

Sue, thank you for suggesting this. I think I'll bring it up again to my doctor. I have OH, but I have felt all along that there is also something 'bigger' than this. No rest for the weary

Sue,

I have only had an abdominal CT with contrast and it specifically stated that the adrenals looked normal. I certainly didn't FEEL normal at the time What would a 24 hr urine show in addition to my serum and saliva results?

This is a little off-subject, but I just received results of a serum Insulin-like growth factor II and it is high. I googled it and of course there's lots of scary stuff, I should have kept my fingers closed. I'm expecting to hear from my fibro doctor tomorrow and I wonder what is going on. Do you know why he would order that?

Sue,

I have one symptom of Cushings, sporadic body hair loss. I do have high cortisol. Saliva test showed all four samples were elevated with a major spike at night. Sure explains the insomnia! I recently had a fasting serum a.m. cortisol and it is high, although not quite off the charts. I have made lifestyle changes with good nighttime ritual etc. and still can't lower this crazy cortisol. I was on Seriphos last year for 4 months and it didn't change a thing.

Lieze,

Thank you for bringing this up. I have been looking for a good potassium source other than bananas. I had no idea! So I will try this as well. BTW, there is an electrolyte drink called Recharge that I get from the health food store. It does not contain corn and I tolerate it. Have you seen that one?

Potsgirl,

I was not given a copy of the actual TTT, just the summary, so I don't know how long it took. But I did finish the full 45 minutes and I was not symptomatic. It surprised me and I mentioned it to the tech. She said, Oh don't worry, you had changes!

My understanding is that neurocardiogenic syncope is the sudden drop of BP with the associated symptoms of dizziness, weakness, nausea etc. In contrast, the gradual drop of BP is called orthostatic hypotension, which is what I have. I don't know much about narcolepsy, sorry. I do have a dear friend with it and she functions very well with meds.

In my case it turned out to be food allergies. Multiple food allergies.

Sarah,

I am finding myself in the same position lately. I had been feeling pretty well for months, and now lately I am sometimes unable to finish a yoga class. I just started PT for fibro and I am even feeling too weak to get through it. I crashed really bad today right afterwards, with a 96 degree temp, chills and lightheadedness. I just feel so fragile, so different from my former self.

However, yesterday was wonderful and I felt almost normal. It is maddening. I am also wishing this is a phase, and a fast one to boot. I hope you feel better soon.

18 months ago I was exactly where you are now. It was the hardest thing I ever did, and believe me, I've been through some crap. I had worked all my life to gain credibility in my field, and I was very established in a career that I loved. HOWEVER, quitting was clearly the best thing I ever did for my health. The rest for my body and the relief from the stress was just what I needed to begin to heal and it also gave me time to sift through doctors and finally get the right team together.

Have hope for yourself, because I was able to return to work at the beginning of this year. I started out very part time and so far I am able to do it. Every day I am scared about relapsing, but if I hadn't taken the time off I wouldn't even be able to write this. Hang in there, I truly understand.

I'm not on Lexapro, but I had terrible hair loss for years before I was diagnosed with hypothyroid. And not with the TSH; mine is always perfectly normal. Some people don't have good conversion. Have you had a recent free T3 and free T4? It's the only accurate way to tell. Also consider ferritin; anything below 70 is too low for a female. Since starting Armour thyroid I have my hair back, skin is soft, no palps, better energy. It really helps a lot. I only bring this up because thyroid is so often overlooked when we have symptoms that can be caused by many things.

Yes, for decades I was told I had MVP when the doctor listened to my heart. No MRI or other testing. Now, since getting my dys diagnosis, I have had multiple echos and even a heart MRI, and there is no sign of MVP! The only thing that changed was my increased salt and fluid intake. Interesting.

I would be willing to pay a fairly high price for a membership. I am so grateful for the insight from the members here. I don't know a thing about running a nonprofit and I am not even well enough to do so at this point. If paying a director would keep the site running, I say farm it out.

I totally agree. I have given up trying to make a connection between BP and dizziness, in my case it is lightheadedness. Seems to come on randomly and it doesn't matter what the BP is doing. Soooooo frustrating.

Exercise has helped me too. I think yoga has been the most beneficial thing I have ever done. However, I have found out the hard way that I really need to pace myself. Felt pretty well the other day and did too much. I totally relapsed the day after and felt just terrible with the lightheadedness, weakness, nausea. It is so hard to have to 'remember' to do less. But I agree that there is hope, there is always hope.

Kcmom,

Thank you for mentioning the magnesium types. I have been taking mag oxide 400mg for six months and recent tests show my levels haven't budged an inch! I couldn't figure it out. But I recently saw a new fibro doctor and he has recommended Fibrocare, which is mag glycinate along with malic acid. This board is soooo helpful.

I have many medication sensitivities, in that they give me really bad nausea. I also have lots of true allergies to both meds and foods. I have orthostatic hypotension but no POTS, and am suspicious of MCAD but haven't been tested. Yet.

Thanks Charmed, for those excellent tips. And are you having good results with the Florinef?