hey friends, i just stumbled on here somehow, im trying very very hard to find an online support group. but i am in the united states... ive been looking for years, and there just doesnt seem to be any... i was hit by a car in '86 which gave me a TBI, plus a sleep disorder similar to hypersomnia but much, much worse... its completely disabling. they think it has to do with some kind of siezure issue. luckily its easy to control with meds which ive been on for almost 30 yrs. however for some reason in '16 they took my meds without giving any reason or giving me any choice about it. i was ok a few months but all my symptoms are snowballing now. the original dr clearly told me this would not heal and i would need these meds for life. so this whole thing is a mistake and its still not fixed.
after 25 yrs stable, ive been under/not medicated 5 yrs.... 3 yrs ago i was sick enough to end up in the emergency room. id gone from 105 to 86 lbs in 6 months. couldn't control my body temp, flashing hot and cold, pouring sweat, extremely nauseated, unable to eat at all, and very delirious. i had been like this for at least a year, steadily getting worse. they kept me in the e.r. for nine hours on i.v. becuase my heart rate was extremely erratic and they thought i had meningitis. but that is what my body naturally does if left on its own, without any treatment, and it always just gets worse... so its really scary. after that, they raised my dose a little, but it still isnt enough to control the symptoms, so, they are still just getting worse.
im so sleep deprived ive started to get violent against my own will and its very scary. i cant drive or remember what im saying a lot of the time. when i was being treated i could work, and was almost normal. im absolutely desperate for some kind of help, things in the u.s. have gone very crazy with medical care, and i have lost all of my drs and literally no dr will talk to me becuase they are all so paranoid and insane about the medicine i take. i havent had stable medical treatment since '16 and im really, really getting sick. its very scary to become physically violent when im not even expecting it. im losing control over myself. im completely incapacitated.
im trying to find an online support group becuase none of my friends believe me. (as usual) even though ive seen like 5 specialists this year and had a full sleep study... every one agreed what i have and the meds i need... they all agreed and said exactly the same thing. but none will 'take the risk' to prescribe for me. (they think the DEA will take their license cause america is crazy) its absolutely insane. its been 5 years and nobody is helping me, so my friends think it must be not that bad or im making it up. but im not, i feel like im dying, i just applied for a passport because im increasingly feeling if i stay in the u.s. the drs here will kill me.
but im not sure what country i can go to as im disabled, though i have marketable skills, and can work when im medicated.
this is a nightmare that wont stop, it took me 15 years before drs listened to me the first time and believed me... i thought i wouldnt ever have to fight for my treatment again like this, but here i am. i wont last much longer and im very desperate. as soon as my passport comes, i will be able to hopefully escape.. but for now im just looking for anyone who understands.... or, if you can suggest any online support groups that are NOT on facebook... or any country i can move to and maybe get normal medical care that isnt insane. very very much need to find anybody who just understands this and believes me.... thank you so much
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Blithe9
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I can't offer any advice at the moment, (but I will re-read your post later and maybe an idea will come to me,) but I just wanted to say you are not alone now you have found this community. There are loads of helpful and supportive people on here 24/6 and I know from experience that just not feeling so alone is a good thing. You can post questions, moans, rants ....... whatever you want. Plus, you never know if someone might come up with some helpful advice
thank you marnie i appreciate that so much! and i wondered about the 24/6. hahaha i just thought well maybe the group takes a day off. hehe thank you so very very much. there isnt really much advice to get, honestly, just knowing people understand is really huge. thanks so so so much :}}}}
What's the name of the medication you're being denied Blithe ?
I know that research can discredit well established drugs after fresh examination of effects but, if you've used one which was beneficial to you (without side effects) for 30 years, I'm wondering what reasons you were given for withdrawal.
well, the whole thing is really weird. ive been on the same med same dose for almost 30 years.. its temazepam, a benzodiazepene. it was low dose, for siezure control.... its the only thing that works for the weird combo of tbi, sleep disorder, and siezures that i have.... ive tried a lot of other meds over the years, and none of them really control the symptoms. its never been a problem before, but when the new administration came in, they are trying to destroy what health care we have as you probly know and so they are chipping away at it with horrifyingly dangerous and bad policy.
so theres no medical reason at all for why they changed my meds.. i was stable, had a job, on a low dose, no side effects, nobody even knew i was sick, everything was so well controlled at that point.... my life was going very well at that point, there was absolutely no reason to change anything...... then the laws just changed. i was never given any reason. i wasnt offered a taper. after 30 years.
my dr retired, and the dr that replaced her cut my meds without even having met me.... so i wasnt given any choice at all or warning or taper or anything. this is happening to a LOT of people right now. they call it the 'opiate hysteria' becuase suddenly drs are losing their minds. they are threatened they'll lose their license or even be arrested for prescribing these totally safe meds, and thats why you cant get a dr to talk to you about it now...... they are all terrified of the DEA. (drug enforcement agency) needless to say, police and politicians telling drs what to do is a really, really rally bad idea and a lot of people are suffering..... theres actually a suicide list of several hundred people who have killed themselves after just suddenly losing all their medical treatment, sometimes after decades of safe use like me..... these people have serious rare health conditions. we are not faking that we need these meds. its not good medicine in any way. its politics, and its killing people... im way too close to being on that list this five years has been absolute hell on earth.
i have taken these meds for 30 years, at the same dose, and they have controlled my symptoms perfectly the whole time with no side effects. there was no reason to change it, and it was malpractice that they did. i was clearly told by the original neurologist that this brain injury was not going to heal, and that i would need these meds for life.
since dr wouldnt listen i self referred to a sleep specialist. i also saw several neurologists. i had to fight very hard to get these appointments. however, every single specialist said exactly the same thing. i even had a sleep study, which the dr said was a 'perfect' picture of what is wrong with my brain and why i must be on these meds. @@ he said there was no question. he said the test was so clear he could frame it.
i asked every single specialist isnt there any other med that will work... i ask them repeatedly. and they basically say well youve been on this med 30 yrs right. youve tried a bunch of others and none have worked right. so yes, this medicine -is- the only one that will work for you. all 5 specialists were unanimous in telling me this. they dont even have any other suggestions.
they were also unanimous in being too chicken to actually prescribe it. so i have 5 specialists and a sleep study saying i need these meds and exactly why. every one says they dont have any other med to offer me, cause i ask again and again... but yet, nobody will give me what they say i need. its literally driving me insane.
im sure you can imagine how frustrating this is. they are all sure this is what i need... they say exactly the same thing. and none of them will be the one to sign for it. such chickens!! its like being so thirsty and sitting next to a huge barrel of water and they wont give it to you as you slowly die of thirst just watching it sit there. the meds i need cost less than ten dollars a month. its a tiny amount and it isnt even costly. they could give me what i need so easily. yet they wont. and im basically dying from it.
so im kind of lost at this point. its clear im not addicted, i have no side effects, and i get desperately sick without them.... (it is not withdrawal) they say its the only thing that will work, and yet, i cant get it..... im kinda losing hope and have been fighting suicide every second the last five years. untreated siezures are very painful and so is untreated sleep deprivation. yet they let me suffer. they give me no reason why. its the new laws. i cant wait until we have a normal govt again. thast the only thing that changed. its very sad. thanks for letting me talk about it. im so weary of being treated like a drug addict when this is a genuine medical need which is really serious. im in a lot of mental pain. i dont like being treated like a criminal when my life is already very challenging and i just want to get better and be able to work and leave the house again. i havent got out of bed in five years, i used to have a life and a job and volunteered and friends and fun. now i just sit in bed and hallucinate all day. its just so sad. thanks for listening to me long sad rant. i really appreciate it very very much.
I'd suffered depression since childhood but, after my first child was born, the post-natal-depression was so crippling that I was prescribed Valium. Within a few days I was back to coping with motherhood and life in general, and so very thankful.
I took a high dose for 10 years until the 70s when it was it was suddenly deemed highly addictive and countless doctors were being sued for over-prescribing. The 60s 'wonder drug' then became highly controversial and my GP was duty bound to wean me down to a lower dose.
I was prescribed Temazepam in the 80s as a superior alternative to Mogadon and have had it on repeat ever since. I have a meds review every 6 months but haven't heard of any issue so far. It is worrying for many of us in the UK that, since Brexit, there have been murmurs of pharmaceutical deals with the US.
But to withdraw a benzodiazepine instantly is not only cruel but potentially dangerous. What other meds have you tried for control of the seizures Blithe ? x
yes thank you. i know. i still cant really believe that dr actually did that.. with this kind of meds stopping like that can be incredibly dangerous or fatal. what she did really was horrible malpractice. it was indefensible. she should lose her license for what she did. its been literal hell on earth for five years now.
oh my god. YOU UNDERSTAND. YOU ARENT LECTURING ME. YOU KNOW THESE MEDS WORK AND ARE SAFE. THIS IS WHAT I NEED. its driving me insane that they wont give me this simple thing, even seeing how deathly ill i am and that my entire life has been destroyed without them.... they see it, but they dont connect the dots.
they dont understand that them taking the meds that way destroyed my life... it was literally -entirely- their fault. i told them this would happen. i told them to look at my records. i did everything i possibly could to prevent this from happening. nobody listened. i would be totally normal if they hadnt done that. but yet, they are blaming me for having gotten sick! acting like im a bad person. they wont admit at all the mistake -they- made and that this mistake was the cause of all of my current problems. they treat me like a complete criminal for asking for these damn meds. its such a nightmare.
ive tried numbers of other meds mostly related to sleep. the biggest thing i have is a sleep disorder. it is caused by low level siezure activity, so this is why they control it with low dose temazepam, which has worked perfectly for 30 yrs now. none of the other meds have worked, but they have all been sleep related meds. temazepam works cause it addresses the sleep and the siezures both. i have asked repeatedly to try another siezure med and it goes nowhere. i havent even had any names suggested.
it isnt large individual siezures, its constant low level siezures. thats why i need low dose daily, and why it gets violently out of control the more time i go without meds. the siezure stuff spreads and grows and gets insanely out of control until it totally takes over my existence, unless its controlled with the temazepam. i cant find a dr to even discuss alternatives. this is what has been so frustrating. i cant even find a neurologist to talk to to ask this stuff. i really am feeling very very lost at this point. im extremly slleep deprived, have no executive function at all, no memory, ptsd off the chart. and trying to self advocate its like pulling teeth with these meds.
im exhausted and dont want to live anymore. i just need help. thank you for responding. im sorry it took so long to get back here. i forgot how to find this place or what it was called. it took a few days to find it again. thank you again for your response. as i told the other person, im literally seconds from giving up. i just dont want to do this anymore. thanks for listening and understanding ABOUT THE MEDS. omg thank you. !!! it drives me crazy the hypocrisy and morality about medicine that people need to survive... that medicine is safer than any other med ive ever used. its a travesty that they are making me suffer like this for literally no reason. i feel as though im going to die soon. my parents were drs and im not a hypochondriac. i dont feel good inside. theres something really wrong and i need help soon. thank you so much
i also want to clarify the symptoms are not withdrawal, which a lot of drs make that mistake... really its what my brain does when its left on its own. like a spinnning top falling over. my brain just cant maintain itself without the low level siezure control. every time they stop the meds for any reason this happens.. like once before there was an insurance thing and i had to stop for a short time. im always ok for a couple months.. then it snowballs, then im in the emergency room.... it gets radically worse over the course of a year or so and continues getting worse faster and faster with time. the -only- thing that stops it is temazepam. and it stops it right away, and completely. if the dose is correct.
nothing happens til ive been off the meds a couple months, and it starts real slow and snowballs. so that isnt what withdrawal does.
also want to add that being unmedicated for this long feels like its making the damage way worse, and im really getting afraid that by the time they fix this, i wont be able to respond to the medicine anymore.. or the damage will be too much. before i was ok with 15 mg. that was the dose i maintained for all that time.... now 45 mg isnt enough.
im fighting right now please for them to give me 60. things got so out of control that i need a really high dose right now. again, TOTALLY the drs fault. i had things completely balanced at 15 mg even after 30 yrs. im very concerned about the damage this is doing potentially permanently. yet nobody seems at all concerned here. what they are doing is directly making me worse and destroying my life and they seem totally happy for that to happen. im lost at this point. and honestly really scared.
I have been told many times it is important to like myself. Cost me a fortune via neurosphycologist. just so you are aware of my condition I suffered a car accident in 1998, unconscious for 6 months. Reabilitation hospital for number of years then home with 24 hour care. I have improve enough with assistance in the U.K. to now just have an assistant to do the jobs I cannot do for myself. i.e. drive, iron, housework, talk clearly on phone?
Not sure if you could travel with the current virus? My ex always used to say USA was the best we had a holiday home there. When I NEEDED treatment I always came back to U.K. if possible!!
If you need someone to communicate with you I am happy to assist.
hey thank you so much! its great to hear that youve done so well and had so much improvement..... :}} 6 months is a looong time. that is impressive that youve done so much. i do really neeed to talk, nobody in my life gets it at all... its ben so long pretty much nobody i know will really talk to me.... they just dont know how to handle how incredibly sick i am right now.
they dont understand, they feel helpless so they lash out and blame me as though im the one creating this problem... they dont get the lack of medical care, lack of drs, lack of stability, lack of help with tasks, is everything........... i cant function without that stuff..... you know.!! i need those things to function. its been soooooooo lonely.
it sounds like you have been on this path too. i had made so much progress. i struggled and fought for 20 years to rebuild my life. i was able to work part time for 4 years.... i could shop and cook and take care of my house myself. i could even volunteer a little bit. it took literally 20 years to get to that point. of very, very hard work. i had job, friends, social life, not fancy but i really cherished the life i had.
and then they just destroyed it all. i have nothing now. and im in my fifties. i just dont really want to go through another twenty years of rebuilding again, especially when im not correctly medicated. i just dont want to. im having a lot of trouble finding reasons to continue trying when things are this difficult and i just dont have any help and my brain just wont do the thing. it gets worse every day. its been five years........ i feel this lack of treatment is making the damage worse every day... i can feel it. im seconds away from giving up. literally, seconds away. so YES PLEASE i need people to talk to very very badly. i have almost no reason to continue being alive and i need reasons.
PLEASE dont come to the usa right now. this country is a living shithole. plus, theyve probably restricted air travel. literally, dont come here. i just applied for a passport so i can escape before they start building the concentration camps.
im just praying i get my passport and then maybe i'll have a chance at survival. there are rumors that they will stop issuing passports at all, that they have already stopped. i was able to apply for one, so hopefully in a couple of months i can escape this literal hell hole. i hate this country SO MUCH. i used to like it. not love it. but like it. now i literally hate it. its like living in a cross between a mental hospital for the criminally insane and a preschool for delinquents.
either way, yes im hoping to travel, and yes i need humans to communicate with. i really dont want to live at all, and i need reasons. im so close to giving up. so close. thank you so much for listening and offering to help. i really just need any kind of help i can get right now. i feel very very sick. thank you
Hang in there. There are companies that sell meds less expensive if you can get a prescription. I take Vim Pat for seizures. Each state may have a head injury support group. Check on-line, or ask a Dr. Office, or check a state health department if you can.
thank you! yeah the meds are super cheap..... i can get the meds very easy the problem is finding a prescriber. because of the current drug hysteria most neurologists in this state have quit, retired or moved.. you really cant find a neurologist in oregon at all. they just dont exist here. i really, really really need to see a real neurologist and talk honestly about this stufff and seriously look at some med options, but i just cant get one to see me. ive been trying 5 yrs now. sometimes i can get an appt but all i see is the back of their coats as they run away. they confirm what i have and what im taking and then tell me never to come back to their office.
i still dont even have a gp. there is literally noone managing my health care for the last 5 years. noone. i have lost every single dr. i try and try and try to see a neurologist or someone who can really look into this and try to help me.
i think they all know that i need these meds, and there isnt really another alternative. they dont want to be the one to be stuck with me as a patient, and get nailed for going over their prescribing quota. ive had drs literally tell me 'youre not worth' losing their license for. so they blow me off. what i need is the prescriber and the prescription. that is the difficult thing to get. thanks so much for the answer :}}
Find a head injury support group. They may have some insight from their similar struggles. Sorry if I'm repeaing myself (apparently I'm a Deja vu minion).
I'm in the US. Here is a tbi Facebook support group that has worked well for me for years now: The Personal Side of Traumatic Brain Injury. You can also find your local chapter of the Brain Injury Association of America here: biausa.org/find-bia Let me know if you need other options.
omg thank you! i will take a look. honestly ive been so out of it that i couldnt remember where this place was or how to get back here.... i finally remembered how to get back to this site. i will try to look at those thank you so much.... ive called what seems like a billion numbers here, i have notebooks full of them.. i dont know why but so far noplace ive called has anything to help me... thanks a ton for this support group name i will keep it and try to look if im able to remember. my functioning is so very very bad right now. appreciate the answer very very much! im in oregon btw. this state is hell, im considering moving to another state. its so difficult to think and plan i cant even open mail. ugghhhh
It might be a shot in the dark, but this is useful mmcneuro.wordpress.com/head... have you considered a CSF Leak, Chiari Malformation or atlantoaxial instability or craniocervical instability?
hey thank you interesting... im pretty sure its none of those, its just a brain injury from a very severe tbi... its been diagnosed several times. we know exactly what it is. i had an mslt last year and they said i definitely have a sleep disorder, it was crystal clear and this diagnosis is totally right and im on exactly the right meds..... so that part is really done. except, the problem is nobody will give me the meds.. they just ignore what the specialist said.. im just getting sicker and i feel now im getting permanent brain damage. its scary and i stil have NO doctors. its just policy insanity..... even my psych says these policies are dangerously bad and she cant wait until trump is gone and healthcare stops being deathcare.
thanks for the suggestion i'll take a look. mainly we know what this is and what controls it.. the only problem is, they wont give it to me.. and i dont know how to solve that. thank you for the suggestion. im very sick right now. im getting too sick to be able to help myself. im starting to show some weird symptoms like early fronto-temporal dementia. but i cant get anyone to evaluate me for it. the drs are literally insane here. they are all complete pathetic morons. it i feel like im getting closer and closr to death. im powerless to do anything and the drs dont care in the least. im just out of ideas and this injury being progressive and degenerative every day they leave me untreated it just gets worse. thanks for checking in i wish something was better by now but belive it or not i still dont have a stable long term treatment plan and stable meds. after having that for almost 30 years. WHAT FREAKING MORONS. sorry im just so mad at these incompetent moron drs. UGH
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Waiting and Desperation..
I don't feel like I am me
