amybird57

I have chronic fatigue syndrome for decades and have had many ups and downs over the years. Sometimes I cant walk normally due to fatigue and POTS or hypotension, another I can hike out of Canyon de Chelley. No idea why but things wax and wane. So Ive been doing poorly for 2 years and had some issues come up (shoulder problem, poor sleep, ear infection etc) so Ive been in a long slump. I am sure I have some measure of deconditioning at this point. Dr. Nancy Klimas of FL has done some work on how to exercise to overcome the deconditioning aspects, as well as to build endurance over time. Im not familiar enough to describe it here, but it is about keeping the HR under the rate where you go anerobic and building on that. I am trying some (recumbant bike and floor exercises) of these but concurrently my sleep disorder is not managed and is keeping me down. My heart rate can exceed my optimal just by standing up many times, morning is worst. My POTS is definately worse when my sleep is worst so I know there is some relationship for me. Anyways just to share about Dr. Klimas who can be found via google. I recall videos and published papers I reviewed a few months ago.

Thanks for all the replies, I see that I am not alone with this symptom. Honestly I had not thought it was related to position but the ones that cause me to sweat are pretty much all overnight, thus the confusion with hormones being off for over a year. So a new consideration for me, thanks. I am still working on adjusting hormones just in case. I also feel flushed and cold at the same time sometimes. I just recorded my overnight sleep breathing and found that the time of night I start in with the hot flushes, my breathing is significantly more intense, not the shallow breathing of my early sleep hours, so maybe something is reving up that gets my breathing elevated and overheats me. My heart rate from my pulse oximeter changes around a bit during the night, but dosent go even to 90 but a few times ususally. No way to know my overnight blood pressure with the equipment I have. The daytime flushing is exacerbated by heat, warm shower, rubbing my face with a wash cloth, putting on olive oil (my moisturizer), sunlight, sometimes a clothing seam can do it. A cool breeze is uncomfortable on my face also.These are things I never had before. I am not looking forward to summer!

Hi, I have several episodes of night sweats that were being blamed on menopause for over a year, and also worse and worse flushing during the day which do not produce any sweat. My rhumatologist recently suggested that I am having autonomic dysfunction that is causing this in addition to pots. I recently did a few tests for the histimine issue and will get the results later this week. Has anyone had this 2 type of flushing at 2 different times of day? thanks

thanks, can you share what testing you had so maybe I could get started with my local neuro and primary care?

north central az is where i live

I am trying to get into Mayo clinic AZ, and will have a long wait Im sure by how its going. My primary care doc is wonderful and has already ordered a few odd tests I wanted to do meanwhile. I am also going to see a local neurologist and perhaps she too would take some ideas for what to test me for because I am sure she is not an expert in dysautonomia. I hope at least she has heard of it lol. So, what would be good tests to ask for? Primarily I have POTS over a year, which I had in the past when my Chronic Fatigue Syndrome worsened for some reason (25 years of it) as it is now after a shoulder injury 2 years ago. I am also having flushing during the day and night sweats interrupting my sleep. I think I have some temperature dysregulation. I did just do a histamine test and the urine one also due to the flushing. Any suggestions for what to test for appreciated! I would like to know more about what is going on so I can consider the proper treatment for it if I want to try medication. Thanks!

I am trying to see Dr. Goodman at Mayo, and that means I have to call every day and see if there are any openings, so far, none and Ive been calling for a while. Has anyone else seen any other doctors in Arizona for POTS. I am also having quite a bit of flushing day and night. Thanks

I was diagnosed using a sleep study end of last year with central apnea. I have very poor sleep with awakenings from hot flashes in the earlier hours of the night, and then with the shallow breathing that declines to a missed breath. Then, I wake up, inhaling ususally gently, not with a gasp so I didnt catch on till recently. I have been on oxygen overnight and my oxygen remains good when this occurs. Some of these shallow breathing awakenings do get my heart rate very elevated for a short time, so its very disruptive. I am going to a new sleep doctor next week to discuss these specific awakenings. I believe I need the machine that assists shallow breathing that is commonly used to treat central sleep apnea. I recorded my own breathing pattern using a mic and audio engineering equipment I have being a musician so I can hear and see the recording shows the pattern of my breathing. I do think its all related in the autonomic function issues I have, I believe I saw an article I clicked on in this forum that mentions that pots patients may get central apnea. Mine also can happen over and over and the more they occur, the worse I feel so I usually give up trying to get more sleep. I notice days that I sleep less, my pots is worse in the am and my blood pressure is lower.