At a loss - Has anyone else heard of this

[DevilsDoor]

Im at a loss.  My husband was a heroin/cocaine/amphetamine user for 8 nearly 9 years.  He has been clean for 2 1/2 years and now only takes methadose 11ml daily for pain relief, due to a spinal fusion a year ago.  He has just  been diagnosed with cataplexy and after investigation into why he keeps falling asleep during the day even after a good nights sleep, the neurologist has decided his PAST drug use has caused brain damage that is irrepairable.  Given he used to inject down the side of his nose into the side of his eye, we accept that.  What I really need to know is, has anyone else any knowledge of brain damage caused by drug use, if so, what were the symptoms, diagnosis, prognosis, what can be done to help, what can I do.  Our marriage is on the verge of breakdown because even though he isnt using drugs, he cant stay awake or function as a normal person.

[DevilsDoor]

The methadose he was planning on reducing and yes finally coming off it, but now due to what the neurologist has said, it looks like the methadose is going to be his one and only painkiller and increased again.  Ya know Im so proud of what he has achieved since we got married in 06, the day before we married he quit using everything and he was a fairly heavy user, heroin on its own, crack on its own, snowballing. I bet his habit was costing about £200 a week.  His prescription meds he had so many of, now to be taking what he is, its fantastic.  If only that was the end of it, I never expected the sleep issues, cataplexy, still not having anything like a *normal* life.  

What I have found here in the UK, especially local once you are in a drug rehab programme, you get support, the people that dont get it are the families, carers, partners, friends and to help an addict recover, those people need a lot of support as well. They need to be told they arent alone, responsible, shouldnt feel guilty, to hear success stories from others where their loved ones has come through the other end.  Until I found Hettys (support group for families n friends of substance abusers), and now this website I honestly felt like giving up, suicidal, lost, helpless, etc etc

[refusingbondage]

So what is the plan re the methadose?  Does he plan on eventually coming off of it?  There are a lot of chronic pain patients on this forum who can help you with that when and if he is ever ready - and I hope he is soon.  I know a few people who have had spinal fusions, and other terrible surgeries and I will say that although it isnt' easy for them they do live their lives drug free using alternative methods to opiates.  Unfortunately I think the only true way to deal with this sleep thing is to stop the use of the methadose-as its a side effect of it.  You may be able to treat the symptoms of this side effect, but it wont stop until he stops the opiate use, or at the very least lowers his dose considerably.  I am no expert on tapering methadone or methadose so please do it only through your doctor.  I also don't know about permanent damage to the brain (although I have thought the same thing about myself from time to time) but I do truly believe in all my heart and soul that our bodies are incredibly capable of healing - with time and patience that is.. Your a great woman for sticking by your hubby and trying to help him.  It takes considerable strength for the people who love us addicts to go through it with us.  And you are definitely not alone on this site.  Best of luck to you and your husband and please keep us posted.

[ArmTheHomeless]

I got a bad headache right now and its hard to type.

Im glad you found the help you need and as you can see everyone here is awesome and nothing but help comes.

If theres one thing just dont give up on your hubby, stay strong and you guys can get through anything.

[DevilsDoor]

Thankyou so very much, I will research Opiate Induced Myoclonus.  Hubby has been very honest about his medication etc and for what it costs, gets negative response for being up front.  We have had the opposite to yourself, the No not narcolepsy but ya past drug use plus current pain relief (being opiates).

I am so relieved to have found this website after months and months of feeling alone.

[refusingbondage]

Ive always had the 'opposite reaction' to opiates.  Where as they warn about becomming drowsy I would become WIDE awake.  However after years of abusing them - around my 7th year at high doses, around 200-300mg of percocet or vicodin (whatever)/day I started experiencing sleep issues.  It started while trying to fall asleep.  I didn't know ANYTHING about it at the time, but I would get stuck in between sleep and awake.  Being in that state is very scary.. cause you don't know its sleep paralysis - your hearing voices, you cant open your eyes and you FEEL like your having seizures or getting electrocuted 'inside your head'.  Very scary.  This would happen anytime I tried to sleep - whether a nap on the bus, or at night before bed.  It went on for a while and got so bad I stopped sleeping because I was scared.  I would also get periods during the day where my body would go numb and I would get so tired-felt like I was floating. I didnt make the opiate connection then though.  I would also have very sleepy times during the day.. I didnt fall asleep in the middle of a sentence or any of that but there were many times I would be sitting at my desk, and I would feel my eyes go back, feel and hear the zap/shock sensation and then Jump out of it, all in a matter of seconds.  So, I went to a sleep doctor, had a sleep study.  Told him all my symptoms and I started asking questions about opiates.. I didnt lie to him, I told him the truth about what I was taking.. because I started suspecting it was the opes.  He said nope.  Not the opiates.  You have narcolepsy.  His method to treating it was to give me sleep meds to try and get me to sleep without the paralysis and to try to heal the sleep cycle-since I wasnt falling alseep during the day too much, he figured combat it by getting better sleep.  It worked somewhat, but I still had the daytime zaps.. the ONLY thing that has taken it completely away is stopping the opiates.  Methadone is strong opiate and there are studies out there that confirm narcoleptic symptons occurring in people taking high amounts of opiates -- the studies point to cancer patients taking large amounts of morphine, but it all comes from the same place and I think some of us are more sensitive to it than others.. You know when I came to this forum I didn't know what it was called and someone posted with this exact problem - and they me about "Opiate Induced Myoclonus" and I researched it and it is spot on.  Unfortunately I dont think many docs know about this, but research what you can, PRINT it all out and BRING it to your doctor.    

[DevilsDoor]

On wednesday husband and his drug worker went to see the consultant neurologist and put forward to him the possibility of hubby having Provigil.  Consultants response - a strong coffee will have the same affect so no go.  Clomipramine is what he suggested, plus hubby stopping taking his other meds.

As I asked refusingbondage, would u be prepared to share your experiences, history etc, we are so desparately looking for answers, other ppl that have gone through similar, anything that is going to help us, help each other to have something like a normal life.  I dont honestly think ppl realise that giving up a drug is the easy part its the after effects, be they permanent or short term that are the hardest to deal with

[DevilsDoor]

Thankyou so very very much for responding.  We have had very little luck finding anyone that has had similar problems and experiences.  Hubby has had 5 sleep studies, uses a ventilator at night, thought it was narcolepsy, had the tests for it, plus eeg, mri  but to no avail.  Up until wednesday this week, we had no diagnosis, now we have cataplexy.  As a result of this weeks appt, he has now stopped taking codeine, diazapam and fluoxetine, and will only continue with the methadose as a painkiller and the new medication clomparmine (to treat the cataplexy).  His falling asleep for no reason has been worse since last November which is when he had his spinal fusion, but before that he has fallen asleep through meals, driving, during conversations etc.  Pretty much functioning in a normal manner as a family unit has been impossible.

Would you be prepared to share your experiences please, your history etc and how you are now, if nothing else to give us some hope, because we feel quite desolate right now.

Thankyou again

[pumpkincat210]

I have sleep disorders due to previous "upper" drug use.  I am nearly narcoleptic sometimes.   A drug you may want to look into is Provigil(modanifil).  It is a wakefulness promoting agent and increasing alertness. It doesn't give you a high like amphetamines or cocaine, but in some patients it produces a mild mood lift. It lasts all day and up to 600 mg can be taken daily. Off label uses are to wake patients with opioid induced sleepiness.  The effects in me did not produce panic attacks or a fast heartbeat and it wasn't like taking caffeine.  However he should still be monitored by your doctor for signs of abuse (although i hear it is low and i did not abuse it) and other medicines can interact so those should be disclosed as well.  High blood pressure and other heart related conditions should be spoken of as well.  you should definitely do some research into it.

[DevilsDoor]

Yes methadose is the same as methadone only in the concentrated form, as methadone he was having 120ml a day and felt like he was drinking a bottle of washing up liquid, the concentrate form means 12ml day, which he has reduced now to 11ml.  The Doc is so adamant its cocaine/amphetamine use thats caused this problem, aggravated by the medication he is on for pain relief, depression etc.  As a result of this hubby has decided to quit all medication other than his methadose, plus the new medication to treat the cataplexy.

[122 Tactical Fighter Group]

Methadose is methadone in a wafer or liquid form. No difference. I do understand why the hubby has problems from the injection site he picked. Just make a solution of either coke - methamphetamine - or both and drop a pice of stainless steel in it for a couple days. It will almost vanish from the harsh qualities of coke & meth. May have tried to wipe out the temporal lobes of brain or more. Optic nerves. All kinds of things. Follow the Docs advice. Get him mega vitamin doses and even follow the amino acid protocol listed under health pages low right hand side of page. And good luck to you. The Docs can do a lot to fix things these days ---- takes patient cooperation, though...........

[refusingbondage]

I had cateplexy when I was using opiates.  Badly.  I was diagnosed with narcolepsy and insomnia after a sleep study.  I told the dr about my opiate addiction and he said it had nothing to do wit that.  Truth was the insomnia was just because I was afraid to fall asleep because of the catelpexy, sleep paralysis, etc-its a very scary thing to experience.  I did not have narcolepsy.  When I stopped using opiates the cateplexy, narcoleptic symptoms completely disappeared.  I thought this was very unique to me and still thought it might be narcolepsy even after it stopped after I stopped taking opiates, but I found a few people on this forum who had the same experiences -- look up "Opiate Induced Myoclonus"  It may fit your husband.  I think that long term opiate abuse does completely mess up the chemicals in your brain, and your sleepcycle for sure.. but I also KNOW that becomming clean, your body can heal itself.  Good luck.  

[parksean]

Methadose is the same as methadone!

[flmagi]

I was fairly sure that Metadose was the same as methadone, but didn't want to say without looking it up. This could be your husbands problem. Except for the Cataplexy diagnosis. Does he just fall asleep in the middle of a conversation or while he's doing something or is he just tired all the time?
Some doctors have bad attitudes about drug addicts and won't take the time for a proper diagnosis. They'll blame everything on past drug use.
Again, I'm no expert, but I get the feeling his problem is from the methadose. I'd go get a second or third opinion on this Cataplexy thing.
There are a lot of people on this forum that are more familiar with methadone than I am. They can probably help more than I can.
Good luck to you both.

[flmagi]

Look into the HEALTH PAGES on the upper right side of this page. There's a lot of good info there, but pay special attention to things written about PAWS.
How long has this sleep problem been happening? If this is a fairly recent thing, and not been happening since he's been clean, then I would question the diagnosis that it's from brain damage.  Could it be caused by this Methadose?  I'm not familiar with Methadose, and will look for some info on it.
I'm no expert but soon they'll be a lot more people awake and responding to your post.

[sailing1]

Hi Devilsdoor,  I really can't help you with that one, but since you and I appear to be the only ones awake at this God-aweful hour, I thought I'd at least let you know you're not alone and my thoughts and prayers are with you.  

I do know that almost all drugs, medicinal or recreational, used or abused can have long-term effects on the body and/or change the metabolic functions and other chemical functions/reactions of the body and its organs.

I imagine it would be very difficult to pinpoint the drug, or combinations of drugs, that may have affected your husband, so best to find a practitioner who will work with you on minimizing the symptoms.  Have you used the other pages of this site...I think there is an ask an MD section....or maybe a referral to someone/somewhere where you can get a more specific answer.

Best of wishes to you and your spouse.