I was in a coma, due to peritonitis and sepsis 3x, for 35 days and on life support in ICU. My children were told to make funeral arrangements for me. I died and was revived twice. When they removed my ventilator, I regained consciousness. After a total hospital stay of 7 months and 4 surgeries, the last which lasted 10 hours longer than expected and had, at one point 5 surgeons operating on me at once, left me unable to breathe unassisted and again, I lapsed into a second coma for 12 days. I also awoke with an ostomy which I was very upset about, not realizing I was lucky to be alive. That was the only time I recall behaving as I had brain damage, cursing, throwing things. Went through all stages of grief, loss of large intestine, in 2 days. Then carried on as usual.
When I came home to recover, I was drowsy for 2 weeks, medication probably, sleeping through the nights and napping 1 or 2 times during the day.
As I was weaned of all medication , I began to be unable to sleep at all. For days. I talked to my family doctor about it who strongly resisted helping by pharmalogical means.
Days would go by, 5 days and nights was the longest time, without sleep. Finally, I was referred to a psychiatrist who wanted to prescribe an antipsycotic medicine , Seraquil, which I can't take, along with several other meds, now could kill me if taken now my surgeon carefully explained to me since my illness. I refused, explaining why, and showing a better than a layperson's knowledge of pharmacology , as my son studies neuropharmacology. He questioned me, gauging my knowledge. He appeared upset that I would educate myself on my health issues but aquiessed, agreeing I was correct to deny this medicine for good reason but vascilated stating the terrifying side effects I'd suffered due to this medicine before, wouldn't necessarily happen again. Not a f***ing chance.
The letter sent to my family doctor said that I refused medication, true, but I was allergic to it! I was praying this doctor could help me sleep again. I did add that Seraquil is used off label for sleep as it is an antiphyscotic and should only be prescribed to treat that issue alone. Use of certain meds that show helpful treating other problems, are not to be prescribed for anything else.
I'd lost 45 lbs during my hospitilization, regained 25 lbs but now due to lack of sleep, depression, panic, anxiety, I'd lost the weight i gained and now weigh only 85-90 lbs at 5'7". Pain is a daily thing now and I feel I'm falling apart and certain I'll not live till year end.
My only hope is a Neurologist appt, where, I can find out the extent of my brain damage , short term memory loss and if it is permanent. Also, I'm getting an answer from him about why I can't sleep and what he suggests that I do before I drop dead. I was so exhausted that 5 months after returning home, I contracted phnemonia, lost consciousness and spent another 2 weeks in ICU. One kidney also failed. I believe insomnia had weakened my body so greatly that it was partly responsible for it.
If I do fall asleep, it is for 1-2 hours at most. I dream, am relaxed, but something wakes me up everytime.
If this Neurologist can't help me sleep normally again, I see only 2 options. 1. I become a statistic and buy sleeping pills illegally or 2. I die from exhaustion, heart failure , organ failure or possibly suicide.
Research recently done by myself shows that 42% of coma recovery patients have insomnia or other sleep problems. This tells me I'm not alone. I'm not seeking drugs but I believe I have the right to a certain quality of life which includes normal sleep. Hopefully the depression, panic, anxiety and pain will abate when this happens.
Is anyone else suffering like me? I'd like to know.
Thanks for listening.