SarahA33

Hi! Thanks for sharing your story. Seems all to similar to mine. .Did they ever suspect a carcinoid tumor? How long have you been diagnosed? I also used to sleep around 6-8 hours a night. I never had any problems sleeping until I started having problems with my blood pressure. It's incredibly frustrating. Mainly because I have a ton of energy to do things yet I am unable to accomplish most of them because of the tachy and migraines.. I've found crossing my legs and shaking my feet help with the postural changes when raising from sitting to upright. The salt increase and florinef have been ultimately the most helpful with this. It's an almost impossible balance for me. This is one of my largest obstacles. Ambien used to work for me when all of this first started happening. It was hit or miss, but I could average maybe 3 nights a week using it and sleeping about 4-6 hours through. Then after about 3 weeks it just stopped working. I tried the LA and didn't have any luck ( Now I know that Long Acting drugs have little to no effect at all on my system. I have much more success with shorter acting meds And yes.. I completely agree that another hour does sound really good!!!!

Hey, Kayjay Just curious.. who do you see at Mayo? I've had a ton of phone consultations with Dr. Mike Joyner who is absolutely fabulous. His advice about the recumbent bike was great and I also found really helpful his thoughts on daily sodium mg.'s. Are you happy with your doctors treating you now? How often do you head to Mayo? Also.. now there are three of us just on this post who have described being screen for a pheo! All the literature Ive read and doctors ive talked to said that's a common first misdiagnosis. I'll never forget my former neurologist scratching his head saying, "Your a walking pheo!" lol. Clearly that's not the case, but the clinical features are so much the same. How high do your pressures get?

I think you and I may have travelled down some of the same roads, angelloz. I spent months working with a cancer Institute because all I heard from doctor's was "You have a pheochromocytoma." Due to my labs and symptoms I was experiencing. A few months later I had to make a difficult choice to leave certain doctor's and put my trust in new ones. It was the right decision, I was diagnosed and on the road to trying to make sense of all of it. Did u happen to have an Octreotide scan there? Just curious. After reading all the info on octreotide . I become incredibly dehydrated to the point where I was in the ER for fluids. My doctors are in the process of getting the insurance company to agree to weekly at home in-fusions. That would change my life, much like for most of us. I've never underestimated the power of fluids. I take Fludro for this reason, which is tricky with the Hyper POTS since Fludro is known to raise BP's, esp. Supine. I have to be careful and monitor. I cut back on the dosage for a few days and play around with it. Im glad that you are able to find atleast one thing that is allowing you some peace and sleep. I look forward to sharing more thoughts!

I will certainly not be enjoying a nice cup of it this winter. Do you happen to know of any resources online that can help finding examples of foods to avoid? I'll try google-ing too!

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.