Positivelyjenny

Wow I feel like a sloth! I am finding that I need a TON of sleep. I go to bed between 10 and 10:30 at night and wake up between 7:30 and 8 in the morning and then usually need a nap. (I also have Chronic Fatigue Syndrome and was bed bound for a couple of years but I’m one of the lucky few that improved). Lately I’ve been really sleepy, not fatigued but sleepy to the point where a couple of hours after I wake up I am fighting to keep my eyes open. I felt that maybe the problem was that I was getting too much sleep so I cut my sleep back to 9 hours a night and felt slightly better but after 6 weeks of this I went into a POTS flare. Once I increased my sleep again I started to come out of it. But I’m back to fighting to stay awake. I did my exercises and then took a short nap and it’s been about two hours since I woke up and I’m back to struggling to keep my eyes open. For instance as I type I keep typing the wrong words because my eyes keep closing. The doctors say insurance won’t cover Modafonil because I don’t have Sleep Apnea or Narcolepsy and they won’t consider Adderall. I was thinking needing a lot of sleep was a POTS thing but I guess not.

Just wondering on average how many hours of sleep you all get a night?

I have asked about Modafinil but they said insurance will only cover it if you have Narcolepsy or Sleep Apnea, I have neither. I asked about Adderall and got the whole well they are really cracking down on that unless you have ADD which I actually do have but I was diagnosed over 30 years ago when it made its debut and couldn’t even tell you who my doctor was to get the records. I think their big issue is that I am on opioids until I get my spinal stimulator put in (prescribed by a chronic pain clinic) and they don’t like the idea of uppers and downers (in their eyes) which I get but try living like this. I’ve been on the opioids for years so it’s not like it’s the side effects from those or I would think I would have had them already, I did get tired in the beginning but then adjusted. I am looking forward to the surgery though so I can wean off of the pain meds even though it won’t take care of all of the pain, the medical bias when you are on opioids is astounding.

Thank you so much for your reply. Exercise is rather tricky as I’m currently waiting for a spinal stimulator to be put in due to a very bad back. So almost all exercise such as lifting my legs while bent and lying on my back like they showed me in P.t and crunches are unbearable. I’ve been tensing my abs and holding them for counts of 30. I’ve also been trying to do some leg work with a resistance band that my back can handle. Yes I am lucky enough that my doctor ordered home infusion for me so I get infusions 3-5 days a week, it’s up to me how often obviously I’ve upped it to five. I don’t feel like oral hydration works well for me but I still am hydrating with electrolytes as well. Before POTS kicked back in I definitely had a sleep routine with a set bedtime and wake up time and one scheduled nap. I have a rare sleep disorder (REM Behavior Disorder) that really interferes with my quality of sleep and I also have Chronic Fatigue Syndrome. But right now I’m not really choosing to take naps I just fall asleep in the middle of doing things, I physically cannot stay awake. I’m wondering why electronics robs you of energy? That’s difficult because I’m an avid reader and all of my books are on my iPad, i also enjoy playing Chess with friends that are far away and staying in touch with family. What is your take on getting up and doing small chores here and there? Like emptying the dishwasher and then resting ? Then later doing something else and resting?

There is a bit of history behind my question. I’ve had POTS since it was brought on by a surgery in 2016 when I was rendered completely bed/wheelchair bound. In the spring of 2020 my symptoms suddenly and unexpectedly got much better , I kept up with my medication and IV regimen but was probably 75% better. Within the last six weeks I have gotten extremely tired needing naps every few hours and now the tachycardia is back when I’m upright though this time my blood pressure is fine, last time even on all of the treatments we struggled to keep my blood pressure up. I’m hoping that this is a flare but I’ve read that POTS can spontaneously go away and come back and I fear this may be what is going on so my question is this. How to live life everyday, I don’t want to return to lying on the couch or in bed all day everyday. How do you all spend your days? I should also note that so far this time around I’m not having too much dizziness yet , no fainting, it’s simply tachycardia with the posture changes that leaves me severely fatigued, I’ve been sleeping for most of the past three days. I’m struggling with do I just try to push on as normal and then sleep when I crash? I’m the type that needs some sort of plan to do something about this to help myself the problem is that I don’t know what to do just like last time. Looking forward to your advice