SarahA33

Hanice,

Sorry to hear about the effects of the cacao w/nutmeg. With the GI issues I have, I tend to not eat all that much throughout the day. I initially started losing a ton of weight because I was afraid to eat something.

Thank you for that suggestion. It just goes to show how sensitive our bodies are.... do you have any idea why that combo has had such negative effects on you?

Hi there everyone,

I’m still reading through a majority of the posts on this forum and am absolutely astonished at the amount of strength and knowledge I’ve already drawn from it. Reading through all of your stories I find myself able to identify (for one of the first times) with almost all of you in one way or another.

One question I would like to ask is if anyone else diagnosed with hyper pots/Autonom. Dysf. has experienced problems sleeping/insomnia. I average about 2-3 hours per night of choppy sleep. (Up for 3 hours, then fall asleep for about a half hour, then back up again for a while.. Just an example of one restless night’s sleep to say the least) I’ve tried everything over the last few years… writing, meditation, yoga, and medications such as Melatonin (big Mistake!), Valerian Root, sedatives like Ambien & also benzodiazapines. I experience absolutely no sedation with the Rx’s, but, my doctor’s did finally realize during a hospital stay, that a high dose B-blocker Inderal, Clonidine, and really high dose of Ativan drops my heart rate about 20-30 points. I take these medications together ( and many more ) 3 times a day for HR control only. It’s been all about trial and error. Anyway.. despite the lack of sleep, I still seem to go 90MPH and rarely feel tired.. The last time I slept hours ( 9 ) was after a round of botox for the migraines. That lasted 3 days. I tend to have a high energy level despite the fact that I should be absolutely exhausted. I experience explosive migraines and a ton of brain fog that the lack of sleep is making so much worse.. I read so often about OI and POTS intertwined with CFS and I seem to be on the opposite end. Just curious to know if anyone else has experienced the same type of concerns. Any advice is greatly appreciated. Thanks! Sarah

TheGron,

Yes I have been tested for MCAD. The flushing episodes have somewhat gotten better since I discontinued use of Lebetalol at 2,400mg per day. As of today I still experience tachycardia, with a usual resting heart rate of about 110-120 but when standing will climb.. The migraines are still absolutely awful and I experience them almost on a continuous basis now. You describe such a similar fog... I have intense decreased cognitive ability at various times throughout the day. It has gotten so bad that I cannot remember periods of time that have gone by and frequently forget how to do simple repetitive, routine things, (ex: working with a system on my computer at work) almost as if I get stuck on a step and have to back-track from the very beginning. Bizarre.

Hang in there. I frequently have to remind myself that the only option is to keep pushing forward. I hope you have success with this doctor.

Hi Thegron,

I'm also new to the forum and can relate so much to your story. My symptoms started my first year in college and have continued since. Working and going to school at the same time was difficult with the symptoms. It took years for me to receive an accurate diagnosis, Hyper POTS. Much like you, my symptoms started out of the blue. Can you describe your fog a bit more.. My hope for you is that this doctor will be able to provide you with some helpful treatment options. Good Luck with everything.