It’s really bad mate you sound where I was pre Xmas. Give some of the other natural alternatives a try! Meds just compounded PFS for me. As a one off have a tablespoon of honey or cap full of cider vinegar you’ll be surprised but don’t fall into the trap of taking them nightly.
1 Like
An astonishingly long time.
Has your physician suggested - or have you requested - any sort of sleep study?
1 Like
I’ll request a sleep study today. I’m just going back to see them this morning and trying to get everything in order. Is there any PFS literature worth presenting to the Dr’s? I’m not sure whether I should see a private neurologist.
I would recommend taking the following for their clear conclusions. Doctors wont read anything in depth in clinic but both of these are useful to get across that this is a variably serious and novel situation.
1 Like
Sorry for the questions. Are the abstracts sufficient or will I need to purchase both reviews?
The abstracts will be enough
2 Likes
Check out my body temperature theory on sleep, it might or might not help you but it still helps me to this day.
1 Like
If you’re having headaches and brain spasms I would check ICP and IOP (I haven’t done ICP yet) my IOP is elevated and my OCT showed less density in my eye nerves. My pressure is around my eyes so I suspected this. The eye doct put me on eye drops to treat me as I am a glaucoma suspect
Which types of Dr perform these tests? Would I need to see a neurologist for ICP/IOP, thanks.
Neurologist for ICP and eye doctor for IOP. Ask your eye doc to perform a OCT scan as well. This will show how dense your nerves in your eyes are - basically If the head pressure/eye pressure is squashing your eye nerves. This is a good measurement to have long term as well because they can track the changes over a period of time.
1 Like
Just a quick update on my situation. Last night I tried to sleep. I managed to drift off but then awoke with a gasp for air. The 2nd time I drifted off a brain spasm occurred.
The last time I slept was the 4th March. My body or brain does not feel tired throughout this whole period. It’s like a total disconnect. Before my crash I would feel terrible the next day if I missed a nights sleep and would fall asleep easily at bedtime.
Sometimes short term memories issues occur with names and I have to refer to subject material several times. Writing has become more difficult.
My stomach is able to accept a clean diet with supplements magnesium, calcium and Vit D. When I first crashed these things would all cause severe head burning. Now if I take anything that affects my head this causes severe head burning. I’m unsure what this means.
I did take 25mg of adrenal supplement and this caused a complete sexual crash and my body felt cold. Before this crash I could take 500mg without issue.
At bedtime I rest for about 11 hours and try to switch off. The sleeping tablets trigger head burning, sex hormone crashes and spasms. When I try to sleep the spasms just jolt me back up.
My GP thinks the head burning is caused by anxiety and therefore anti-anxiety meds would eventually work and calm the burning. The recommended dosage would be two weeks on the meds. I don’t know if this is a leap of faith that could make recovery far harder to achieve. The other side is to do nothing and see if I recover naturally.
My inflammation test came back normal so anxiety is a possible cause.
I visited an acupuncturist recently. I just had treatment on my gut. They mentioned that lots of their patients suffer from IBS. For the next few days I was able to go 3-4 times per day not that constipation was a problem. The same night after treatment my brain actually felt tired for the first time since the crash, however it was back to normal the next day. i did suffer from some chest pain for about 24 hours after the treatment. Given this reaction I won’t be having anymore for now and so won’t pursue acupuncture for insomnia.
My hip pain occurs the morning after a sex hormone crash. If no other crashes occur it tends to go several days later. Creaking joints have improved and feelings of high estrogen has departed. No other symptoms have presented themselves.
1 Like
Hi all I’m reaching out to the group. I am seeing a Neurologist tomorrow. I have only slept once in a month and am concerned this will be my fate. I get severe headaches when taking sleeping pills which also appear to cause a sex hormone crash. I wanted to ask the Dr about having an induced coma although I might not meet the medical requirements. I think it is done with barbiturates. Although I don’t know if this will just make things worse.
1 Like
Have you tried Ambien? It helped me in the beginning, as I had reported here:
After about 2 years it started reversing it’s effect:
But it may be worth a shot, if you haven’t tried yet.
Thanks Awor I’ve been through your post a couple of times. When I take sleeping meds I crash and get constant headaches. My brain seems fragile to stress right now but is slowly improving with rest. My body has also stopped feeling tired, this bothers me the most.
Perhaps super low dosed Remeron would help? (low dosed is important, because higher dosage will not put you to sleep)
Do you have a dosage range in mind?
Something like this, or even a quarter of a tab:
Really appreciate you taking the time to respond. Thank you again.
1 Like
Hows your sleep nowadays and did you notice any lasting sides from taking mirtazapine?
No sides. I think my sleep has been affected by my decision to fast for 2 days during the start of my crash. After the fast my body never felt tired again. I hope others learn from this, stay calm and endure the crash. It seems a bad time to experiment with anything. Allow the body to recover naturally during this period. Sorry I know I’ve gone beyond your question but just thought it might help others. I’ve not had sides from the drug other than headaches. 1 mth later I’ve come out of the crash with few sides but loosing sleep could be fatal.
1 Like