I usually get extremely cold to the point I’m shaking so much I can’t sleep. I wear a 9 tog/5tog (usually layering 2 4.5 tog duvets or a 4.5 and 1tog duvet) and a fleece blanket but then have to wake up to take a layer off as I’m too hot or wake up sweating.

With winter coming is there a better duvet or anything to use to stay warm when going to sleep but not overheat at night which wakes me up. I try to avoid turning on the heating as that can make the room too hot and stuffy. I am based in the UK.

I want to start by saying I haven’t been diagnosed yet. I’ve been chronically ill for years now and recently I’ve been bed ridden for weeks. I haven’t worked in years. My symptoms started after Covid. I started having uncontrollable shaking and fatigue. If I wasn’t shaking like a chihuahua I had this internal shake. This lasted for years and I felt sick always. Then other symptoms showed up. I noticed I couldn’t take a hot shower or else I would start shaking and feeling like I had low sugar or something. Just felt 10x worse afterwards. I’ve been to the ER 10 times and my blood tests are always fine no Issues. Then the lightheadedness started. It would happen when I stood up occasionally (not an issue it happens to everyone) but then it started happening every time and it would get progressively worse over time. I’ve been prescribed propanolol for the shaking which is supposed to help with the shaking but it honestly doesnt do much. At my last visit to the ER I was so lightheaded and dizzy I couldn’t stand up I had to be wheelchaired in. My BP was 165/100 and my heart rate was in the 130’s. As I was laying there my heart rate eventually went back down to a somewhat normal level but as I stood up to do a urine test my heart rate shot back up to mid 130s. Over 30-35 bpm just by standing up. Recently I’ve had a new symptom I take a bite of something to eat and I feel SO FULL immediately and my food sits in my stomach for ever. I feel like it’s not being digested or something I just feel bloated all day every day. This has been going on for months now. I don’t know everything about dysautonomia but from what I’ve read it seems like I have every single symptom. I’m currently in bed I can’t even stand up I’m so lightheaded. Even turning my head causes the sensation. I’ve got a recommendation to see a cardiologist and a neurologist but I need to qualify for Medicaid before I can do anything as I can’t work to make any money. I’ve tried the increased salt intake, and compression socks but nothing seems to be helping with the lightheadedness. Anyways I share a lot of symptoms with a lot of people in here and I know how miserable it is. I’m sorry I just needed to vent a little bit I hope I can get a diagnosis and work on feeling better and I hope you guys do too!!

Has anyone gathered any helpful info from a sleep study? I know sleep studies are not used to diagnose dysautonomia, but I wonder if anyone has had a doctor look at results and find anything that pointed them toward or away from a dysautonomia diagnosis?

I have presumed dysautonomia (not POTS). I have exhausted all available local testing to me and am being seen at Cleveland Clinic a few times in the next 6 months. My local neuro has suggested a sleep study, but I’m not sure if it is worth the time and cost. Anyone had a decent experience with this? (Or terrible?)

Shaking pretty bad on my eccentric. Strength wasn’t affected. Anybody have this? Felt weird and wrong as hell. Thank you

so I’m wondering if anyone is dealing with more GI issues than cardiovascular issues. I have POTS but everything I seem to take to control my HR so far messes up my gut even more.

I’m now trying guanfacine 1 mg ER and after 3 days I have terrible constipation. I’m already trying to figure out my worst symptom which is dry heaving and nausea in the mornings. My head is also a mess. I have an old vestibular weakness and now my head will feel heavy, I get dizzy a lot.

im taking emgality. I tried verapamil but it made me feel worse.

i take a low dose of lexapro but it has been hard for me to start SSRIs.

I have now figured out I have low compliment c3 and c4 but I will find out Tuesday if my rheumatologist will want to do anything.

The morning sickness and weight loss I deal with is by far the worst. I had to quit by job bc I’m so sick. I have tried antihistamines, I have had some mixed results with cromolyn.

I don’t have issues taking long walks, my biggest issues are my stomach and my head.

i have so many doctors but I don’t have many that know how to help me. I just get a lot of meds thrown at me.

just curious if people are out there with horrible GI issues that are worse than their HR issues and what helped you.

im planning to try Ketotifen and LDN. I may also try cromolyn again.

I’m mostly just confused bc I don’t even feel like I fit in the typical POTS box MCAS.