NEED HELP NOW

[katrina39]

I HAVE CHRONIC INSOMNIA, IT STARTED IN MY MID THIRTIES...
I AM NOW 57 YEARS OLD, RECOVERING FROM A CRAINEOTOMY TO REMOVE A SUBDURAL HEMATOMA ON RIGHT SIDE OF MY BRAIN ON 12/27/07...
BEGAN HAVING SEIZURES ON 1/3/07, AND WAS PUT ON 400MG DILANTIN, 100 MG TOPOMAX, AS WELL TAKING CLONZEPAM 5MG, MISOPROSTOL 400MCG, SEROQUEL 125MG, L-THYROXINE 120 MCG, AND LAST NIGHT TOOK 50 MG 5THP...
I ONLY AVERAGE 3-4 HOURS OF SLEEP A NIGHT SO I WAS DESPERATE TO GET SOME SLEEP, AND READ UP ON 5THP, AND DECIDED TO TRY IT...
NONE OF MY DOCTORS WILL COMMIT THEMSELVES TO RECOMMENDING ANYTHING FOR ME TO TAKE TO HELP ME SLEEP BECAUSE MY CASE IS SO COMPLICATED...
I HAVE GONE THROUGH ALL THE SLEEPING MEDICATIONS ON THE MARKET, AND BECAUSE OF THE DRUGS I TAKE AND BECAUSE I HAVE TAKEN THEM FOR SO LONG, EVERYONE IS JUST BACKING OFF...
I WOKE UP LAST NIGHT WITH ONLY 4 HOURS SLEEP, BUT FELT VERY TIRED, WENT BACK TO SLEEP AT 5:3AM, AND HAD STRANGE SLEEP.  NAUSEA, ABDOMINAL PAIN, THINGS JUST DIDN'T  MAKE SENSE IN MY MIND...
I HAVE HAD EITHER 5 MINI STROKES SINCE 2/13/07, THE LAST ON 6/26/08, OR MY NEUROLOGIST SAYS IT COULD BE BAD MIGRAINE HEADACHES, AND NOW I HAVE TO GO THROUGH ALOT OF TESTING...
I NO LONGER SUFFER FROM SEVERE DEPRESSION WHICH WAS LIFELONG, STARTING AT AGE 11, HAD OCD, FIBROMYALGIA, DEGENERATIVE DISC DISEASE, HERNIATED DISCS IN BACK, HASHIMOTO THYROID DISEASE, CELIAC DISEASE, LOW THRESHOLD FOR SEIZURES...
I DON' KNOW WHAT TO DO ANYMORE.  I CANNOT EXIST ON JUST THIS MINIMAL AMOUNT OF SLEEP, BUT I CAN'T GET ANYONE TO HELP ME BECAUSE OF MY COMPLICATED CASE...
IS MY REACTION TO 5THP NORMAL, SHOULD I CUT IT BACK TO 25MG?  DO YOU HAVE ANY SUGGESTIONS FOR ME?  I AM BECOMING HOPELESS...
I HAVE ALSO TRIED ALL THE DRUGS FOR DEPRESSION, THEY JUST DIDN'T WORK, BUT I AM NOT DEPRESSED ANYLONGER...

[Zepora]

Just read your post and my heart goes out to you so much! You've been so much pain and suffering and then your psychiatrist sounds like a sadistic liar and should have his license revoked! I just wanted you to know that you're not alone. I'm also dealing with long-term sleep problems stemming from my early 20's, we're around the same age, you and I. I need to take 210 -300 mg of Restoril to have a good sleep at night. I've also tried everything, but it was really a matter of raising the dosage. This is not a safe way to go, however, as we both know. If I only take 150 mg, like my Dr. thinks I'm taking, I wake up 3 hours later and can't sleep anymore. But she doesn't know how many I really take. The pharamcist doesn't have a problem refilling the prescriptions, as long as it's not every month and I've made it work. I know, I'm bad and I know I have a problem, but one step at a time. Good luck to you, honey, and if you ever want to talk about anything, drop me a note. Hugs & Prayers

[katrina39]

i need to tell you about this psychiatrist and what a bad man, person, doctor he truly is...
in 1998 i had a horrible accident with a traumatic head injury...  i was sent to a neurologist, who later had his medical license revoked, and know lives in california as a wizard...
anyways, i was sent to him, he determined i had epilepsy.  my sister and i are sitting across his desk from him, and he is looking over my medication list, and sees that i am on klonopin, and have been since 1989 when i had a nervous breakdown...  he wants to just stop this drug, so he can start me on lamictel right away, and i argue with him, that he can't do this, because it will through me into seizures, but he's not listening.  he wants the name of my psychiatrist, and i give him his name, and he calls him.  he asks my psychiatrist if he can just stop the klonopin, and my psychiatrist says yes...  this neurologist hangs up the phone, tells me this, and once again we argue about what stopping this drug will do to me, but his response is, "if you ever have a seizure in my office, i will do nothing to help you"...  now, i am physically, mentally, emotionally so messed up from this accident, i don't have the strength to even get up and walk away, so he stops my klonopin, starts the lamictel and my sister and i leave...  i get home hysterical, and call my husband, and he has me make an appt for the both of us to see this doctor ten days later...  at the appointment, we are in a small room, my husband, myself, the doctor and his assistant.  as my husband and this doctor are arguing back and forth, i go into my first grand mal seizure, and this doctor, gets up, leaves the room, goes back to his office and just sits at his desk, while i'm on the floor seizing...  my husband had to run back to his office, and get in this guy's face and tell him to get in there and help my wife...  finally he does...  that is the first strike against this psychiatrist...  now, i have saved every piece of paper from all the specialists i saw over the next few years, and i have in my possession a letter from this neurologist dated 7/15/98 stating my psychiatrist gave him permission to just stop the med klonopin...
we're going to fast forward to 2007 now...  my psychiatrist has gone through every antidepressant, and sleep aid he can think of, but nothing is helping me...
on 9/15/07, i go to two different pharmacists and ask if they know of any drug that helps with sleep...  both say trazadone, so i call him and ask if he will call me in a prescription and  he does for 300mg to be taken at night, along with ambien cr 12.5, klonopin 6mg, and everything else...  i call him and tell him i'm concerned over the 300mg of this drug, and he just says, "i have a patient waiting, i can't talk now, and hangs up...  i go to my pharmacy, and as i am picking my medication, i ask the pharmacist about this high dosage, and he won't even look me in the face, he just shrugs his shoulders, and says, " well, you'll be alittle drowsy...  for the next two nights i take this drug, and am so overdosed, on that wednesday i walk out to my kitchen, black out and my husband finds me collapsed in one of my bottom cupboards...  he pulls me out, i am barely concious, he gets me standing, i am leaning against my countertop and thinking i need to take my morning medication...  as i am trying to get the top off one of my bottles, i pass out again, this time falling backwards and landing on the floor hitting my head really hard...  when i wake up, my husband is calling for and ambulance and they are on their way.  the only thing i know at this point is my name and nothing more...  at the hospital they do a cat scan and discover i have a hematoma and a bleed in the front of my brain... my neurologist comes to the hospital, and asks me to tell him everything that hapened, so i do. then he tells me, you only start someone on this drug at 50mg and that 300mg is the max dosage, but you would only put a person on that much, by slowly bringing them up to that level over a gradual period of time, and only if needed...  strike two for my psychiatrist.  now, i am so angry, i just want to get in his face, and have it out with him...
in september he puts me on seroquel 50mg...  it works one night then no more.  i call him, and he says, go ahead and up it to 100mg, but when i do i start having really bad anger issues from this drug...  i call him again, this time he picks up the phone and says, " look you can take any amount you want, even 800mg, this is a thriving practice, don't call here anymore, and hangs up...  now, i've only told you the highlights with this guy, there is so much more...
i have let him go after he put me on remeron 30mg on 6/25/08, i had a really bad reaction and then went into a mini stroke...  i have a copy of my records, and it reads like a steven king horror novel...  that is why i had to severe my ties with him...
but kat, here's the thing...  i am an evangelical christian, and i know that if was by the hand of god, that he stepped in and saved my life, time and time again...  no one else could have gone through what i did and survived...  i have in my possession, a report from a lab confirming that my psychiatrist at one point had me on a toxic level of neurotin...
but anyways, last night at church, our pastor talked about living by faith, and when he got through, he prayed over me, for healing of this insomnia, and my body and mind as i go through my drug withdrawal process, one rotten drug at a time...  last night i got six hours sleep...  i feel like i am soaring on the wings of eagles...
i am going to stay focused totally on god, and i know he will sustain me...  i will have the sleep study done and find out, what happened, and how did it all go wrong...
i don't know what your beliefs are, but that is mine...
thanks for writing...  god bless      

[KatEyes]

Hi again. Please do exercise caution getting of the meds, and do it by the books. As bad as many meds can be, going off them improperly can be dangerous. (I made the mistake one time - I'll follow instructions next time.) And there's nothing wrong with having a psychiatrist's oversight while you do this. They are familiar with side effects and specifics of getting off the meds. And they could tell you what to take to get at least a few hours sleep at a study, although you probably know best what would work.

I do a lot of reading on this subject due to my own and other family members health issues. I particularly like to read on PubMed because it's from a scientific perspective. That's where I was reading about epilepsy and sleep apnea - no real conclusions, just some statistics on the incidence of both in patients.

About the visualization... I have a friend who has panic attacks that awaken her, has had them ever since her son was killed in the military. She keeps a small fan by her bed and a CD of ocean sounds. She imagines herself in a hammock on a beach, and the fan is a tropical breeze. She says she's gotten good at "going there" and it settles her down a lot.

Hope you find a way to get that sleep study. Best wishes.

[katrina39]

you know, you are the second person to tell me about trying to visualize myself in another place that's peaceful...
i try to think about my cat when i found her as a two week old abandoned kitten underneath a bush, and how i took her home, bottle fed her, and raised her...  she's absolutely beautiful...
the other day i went to my now ex-psychiatrist's office and picked up a copy of my records, i have been with him since 1/98...
the list of drugs this man, as well as other doctors put me on was line by line, front to back of page, six pages long...  i don't know how i got through the insanity of all those drugs, and believe me when i say, i have tried them all...
now, as i try to get off of them, my doctors are trying to label me as needing a psyciatrist again, and i just have to push all that to the back of my mind, and concentrate on getting off one drug at a time, and living through this terrible insomnia...
thanks for carrying
god bless

[margypops]

Yes cut back on the 5HTP  it does cause nightmares, and insomnia also obsessive thoughts ,after a while. it good for a short time but if you have been on it long, trust me. wean it down then off it. You could try it again later but dont stay on it for long.Please try to do this and you will see, I have a few techniques for sleeping I try and they sometimes work, incidently after you quit the 5HTP give it a few days to get out of your system. I visualise a nice place I love, in my head, I lay in bed and each night I go there, I brainwash myself, it can be a garden I sit in a beach where I am on a desert Isalnd. ITs only used for sleep I didnt beliecve it would work but it does, Nowadays I have learnt to accept I may never sleep like other people but I do what I can I get 5 hours now on good nights and have learnt the Hard way that Drugs do not work there are always side effects and with drawals to go through.

[katrina39]

you know not one of my doctors until now has ever thought about a sleep study...
i did not realize that you could do a study with just a few hours sleep but i am going to ask my doctor...
how did you know about the correlation between epilepsy and sleep apnea, i had no idea, and my neurologist has never even said anything to me...
thank you for taking your time to share this information with me, at a time when i need so badly someone out there who has any idea of what i am going through...
i pray that all will go well with you...
god bless...

[KatEyes]

I am surprised that a sleep study has not been done already. If perchance you were to happen to have sleep apnea, that is a risk factor for strokes and there is thought to be a correlation between epilepsy and sleep apnea.

Even if you only get a few hours sleep at a study, that's better than no testing at all. Talk to your doc about what med to take to assure you get some sleep. Sometimes people with sleep disorders appear to have insomnia when it's either the disorder waking them or else it's the body's defense mechanism to avoid what could be unpleasant or even dangerous.

I'd put that sleep study at the top of the list of next steps.

[katrina39]

thanks for your answer...
i am going to try to go through a sleep study lab, but they told me that if i can't sleep, they won't be able to study my sleep patterns, and can't help me...
after my 6/26/08 mini stroke, the doctor at the hospital told me that i may have to go to a place in rochester or ohio, where they specialize in sleep problems.  i have no idea if my insurance will even cover that and i have no money to do it on my own...
it's like a catch 22 situation, just so crazy...
god bless you scarlet...

[scarlet37]

Sorry your having difficulty, I know what sleep deprivation can do and that in addition to your other health issues makes everything much worse.
     Fibro and Thyroid disorders are commonly connected with sleep disorders . Have you also checked your medications for side effects , certain meds can actually cause insomnia.
    Have you ever had an official sleep study done to determine if you have sleep apnea or any other sleeping disorder? If not it would be beneficial to talk to your doctor or seek out a sleep specialist.

    Hang in there~ Best Wishes~