angelloz

I have horrible insomnia so I try to really relax before bed. When I lie down and get comfortable after a short period of time I get a weird feeling. Sort of like my BP drops and I feel very uncomfortable. Takes a bit to recover. It happens almost every night. Anyone else?

I had Covid in February. A mild case.  Was vaccinated and boosted. Now here in July I am having more autonomic issues than I have had in many years. Low BP, without the tachycardia as in the past. Severe head and neck pain.Frequent nausea. I am 63. Don’t know if I can fight my way to better days again. My last problems began at menopause around age 50. Low blood volume was a major issue so lots of salts and fluids. After years I was so much better. I don’t know if Covid has caused this or something else. 

I will try that. Thank you. 

I have awful tinnitus. Did not have this with my first go round with dysautonomia. This is driving me crazy. Especially at night. 

I do get spells of feeling quite hot. At times I am even running a low fever. 

Years ago I had head pressure , like a brick on my head when I was upright for awhile. This eased over the years. Now it is back and includes pain in the back of my head. It is more severe than before. It also includes ringing in my ears. My doctor is going to check for a csf leak. Right now I am on bedrest. Does anyone have orthostatic head pain as a primary symptom? I also have migraines but this is nothing like that. 

Well I had this years ago then it went away. Within the last month or so many symptoms including that one have returned. 

Along with the orthostatic headaches I have developed crackling sounds in my head. Anyone else. Sounds like rice krispees or gritty sand. Also now have tinnitus 

On 2/18/2022 at 9:07 AM, m1279 said:

I've been having a terrible time the last few months with really bad adrenaline surges at night. Often during the day too but it's 100x worse at night. I'm surviving on 0-3 hours sleep. The sleeping tablets I was taking and were just about keeping me sane have stopped working so I'm in a really bad place. I've literally tried every natural method to control these surges but I can't seem to get a handle on them so I'm exploring medication options. I've been diagnosed with CFS/ME but I've had many symptoms of POTS for years (it's just never been explored due to unhelpful doctors to be honest) and I'm beginning to feel it could be hyper-pots due to the symptoms I'm experiencing. 

I've read that clonadine can help a lot but I've just spoken to my GP who will not prescribe it for the reasons I am asking for it which I can understand but it's really frustrating. I've been prescribed a beta-blocker which I'm hoping might help.

Has anyone got any experience with this? How do you treat it and is it possible to get a clonadine prescription in the UK?

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Years ago I had the same issue for several years. 2 hours was a good night. I got through it by listening to my radio with an ear bud. I didn’t put it in my ear just turned it up a bit and nestled it in my pillow. I would listen to NPR. It at least relaxed me a bit and I would feel calmer. Sometimes  I would fall asleep. 

Rats! Not much here in Kansas either. 

My body gets freezing cold and then very hot. Sometimes when I am hot I do have a low fever. Under 100. Anyone else?

I am doing ok with walking , however I always get an orthostatic headache whenever I am upright for any length of time. Does anyone else get the orthostatic head pain? Any suggestions?

Interesting. It looks to me as though your lowest BP’s are first thing in the morning. 

I have been doing pretty well for several years with low BP and tachycardia. Suddenly the past two weeks have been back to the way I was years ago. What happened? I am now 63 years old. In the experience of all of you which is most likely. 

1. Even though fully vaccinated I had Covid in early February. Could this be a delayed reaction?

2. I am decreasing my migraine triptan medication which is a vasoconstrictor but I have done this before with no I’ll effects. 
 

3. I have been diagnosed with lipedema( not lymphedema  ) and have decreased my salt very slightly. 
 

I am feeling pretty low after having come so far. I have been doing 10,000 steps a day. Today I can barely stand for any length of time. 

12 years ago I had a tetanus booster. I was 50 years old. Two days later began my journey with autonomic dysfunction.  It took about 6 years to improve and get some of my life back. I now need my booster again. I know there is no way to know for certain that the booster was the cause of my autonomic dysfunction. I am scared however. I don’t think I can go through those early years again. I was bed bound etc.  My doctors cannot promise that there is no correlation. I live on a farm and often get cuts. Any thoughts? 

I used to get very forceful heartbeats when I rolled over. It has finally stopped but took several years. 

Suddenly developed edema. Could it be the salt loading? I have done this for 12 years without issues. I see my doctor’s nurse Thursday. Will see what they say. Has anyone else had this issue?

Well my breathing troubles continue along with chronic dry cough....this has been going on for months along with my dysautonomia  returning.  Had chest CT , heart work up etc... I guess next is a pulmonologist .  I had this a bit the first time around but way worse this time. Breathing takes so much work and feels like I'm not getting enough oxygen. My pulse oximeter is 98 most of the time. Can go down some when upright and moving around but not always. I am wondering if anyone else has the odd cough?  Hope everyone is doing as well as they can.

Well I have been having some of this too. I too drink water deep breathe and try to lay so I don't hear the pounding. I think mine may be heart related. I am 62 and having new issues. Having some tests done. I had this at times too when I was younger and only had autonomic dysfunction so don't over worry. Hang in there!

I have this as well. I have a question. If you can manage to go to sleep does it go away then . So if you stir in the night do you notice it? With neuralgia and things like atypical tooth pain it is usually gone in the morning then returns rather quickly. Some days are worse than others. Amitriptyline helped me but I stopped it for some issues I was having. Ice at night does help me. It is miserable and having multiple things to deal with just doesn't seem fair. There are many medication combinations that can help.

I am 62 years old and with salt and fluid loading have had very few issues for the last five years...then started having nausea, breathing issues, a slight dry cough. One night I had arm and shoulder and chest pain and went to the ER. Heart EKG ,Troponin, looked good. Had a nuclear stress test to be certain heart is OK. That was fine. Now I am home, can't stand for long without chest, arm, back pain, breathing labored, some nausea. Feel awful. The first time around I had similar issues but no pain. I am going back to the cardiologist but wondered if anyone else had any type of " heart related " pain that comes and goes. Thanks in advance.

Hello all, I am finding on my worst days I have low pulse pressure. I have checked my BP machine at the doctors and it is accurate. One day I felt so badly I called the nurse with a pulse pressure of 11...she told me it couldn't be that low. When I research low pulse pressure it doesn't mention dysautonomia...only other severe aliments. Does anyone else have this issue? What is the cause? Do I treat it like low BP with fluids etc? Sigh.....

I used to do this all the time at the beginning. Not certain was causes it but would be doing the dishes and realize I was sort of holding my breath and not breathing. I had to remind myself.

MomtoGiuliana, I also have had a relapse after many years and my B12 and D was discovered to be low? Strange?  Also, I used to have autonomic storms and a doctor told me low blood volume can actually cause panic attacks. They have a physical cause.

Hello to all, I was diagnosed with autonomic dysfunction around age 50. I won't go through the horrid list of symptoms as you all know them:). After about 5 years my health improved greatly. Best thing for me was salt and fluid loading. I am now 61 and things are suddenly awful. BP drops are back, temperature dis-regulation and now nothing is moving through my stomach, trying to stay hydrated and barely eating. I have upcoming tests. The one change in my life was starting the NEW oral CGRP medication Ubrelvy for my migraines. It was helping with that and I took it for several months. I have now stopped . I am afraid it has wrecked my body again. It is so new I seriously doubt all side affects will be known for years. I'm not sure what I am asking but I am so scared I ruined my health. I don't think my body can fight through this again. Sigh....