Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: SandJ on August 15, 2018, 04:14:56 PM
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I've been on Gabapentin for sleep for 3 years (3 x 300 mgs). When I had my year of 'hell' with hot flushes (2016) I was on Gabapentin. My year of hell stopped after starting HRT.
I noticed I felt really energised and 'happy' a couple of hours after taking Gabapentin (I take it around 9 pm) so my doctor suggested splitting up the dose. It helped a lot with anxiety, but only when it kicked in, and then I'd be anxious again, so I started taking more - up to 5 x 300 mgs per day. For sometime I have wondered about the side effects, even before I upped the dose. I have M.E. /possible chronic lyme type illness. I kept thinking something was 'wrong' in my head. My brain fog got worse and worse. My doctor just shrugged. I finally find out that Gabapentin affects short term memory. So I promptly started to lower the dose, until finally only taking one 300 mgs at night. My brain fog much improved.
Two nights ago I thought it was time to drop the final mg dose.
It was like I was thrown back into my year of hell, instantaneously. Hot flushes every hour all night.
I know Gabapentin is used to help with these, but I really did not expect to have this experience, since my year of hell began when I was on a higher dose and my latest bloods showed 'normal' estrogen etc.
I have gone back to 300 mgs and slept fine last night. I will ask my doctor if she can prescribe 100mg capsules to see if I can reduce further, but slowly.
Just wondering if anyone else is using both HRT and Gabapentin and has experience of any of this...
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I take HRT and pregabalin (very similar to gabapentin). I strongly suspect the pregablin is helping me much more than the HRT. I like pregabalin and how I can vary the dosage depending on what life is like. I also suffer from CFS and pregabalin (quite sedative at just 75mg) helps me sleep better and in turn has given me a little more energy. If want to talk more just send me a private message.
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Just my 2 cents, but I really do despair at the 'off label' prescribing of both pregabalin and gabapentin! Both are very strong drugs that affect the GABA receptors, much the same as valium does (hence the 'gaba' prefix), and the nervous system as a whole. They can have profound and protracted withdrawal effects - there was a detailed investigative article in the DM covering this very subject not long ago.
Just like benzodiazepines, tolerance sets in over time and doses have to be increased just to prevent withdrawal type symptoms even when the patient is taking the drug, and unless increased the therapeutic 'benefits' start to diminish.
My neuro. despairs that these drugs are being prescribed as they are and maintains that they should be reserved only as neuroeleptics, which is what they are are designed for.
I don't wish to alarm anyone taking them, but I would speak to your prescriber if you feel you wish to quit them and ask for a structured tapering regime to allow you to withdraw safely and with the minimum of withdrawal effects. And of course it goes without saying - do not stop these medications abruptly as this can cause rebound seizures. Good luck! xxxx
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Interesting view but my research (and my doctor) came up with the opposite conclusion ie that there is no long term build up which is what makes them a great drug. In fact the NHS itself, states that it is safe for long term use. And their use for anxiety is not 'off label' as NICE lists it as one of its uses, as does the NHS. I can add links if you would like.
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I'm taking a low dose of pregabalin (50mg twice a day) alongside HRT, and I have to say that although the results haven't been dramatic, it helps me sleep and it does seem to be the only prescription drug I've tried that I can tolerate (albeit at a low dose) and at least improves things slightly. I did lots of research before taking it and everything I read seems to support what aspie65 is saying - it doesn't result in increased tolerance, and in the general scheme of things is one of the lesser evils in the panoply of drugs routinely dished out to us. And in the end that's what it boils down to - if you're really really desperate and nothing seems to work you end up taking the least of the evils on offer, just to get through. Pregabalin was prescribed for me by the Mental Health Crisis Team when I was feeling suicidal; didn't really have a huge amount of choice.
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racjen so glad you are happy with pregabalin. I am such a huge fan of it. Wish I'd known about it years ago.
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Thanks aspie, now I just have to sort out the progesterone intolerance and hope that the anxiety isn't going to suddenly go through the roof again as the progesterone is out of my system. Sigh...for most of this week I've been in utter despair due to utrogestan withdrawal, today the sun has come out and I feel a lot better. Going to have to try a different progesterone I think.
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From the DM:
https://www-dailymail-co-uk.cdn.ampproject.org/v/www.dailymail.co.uk/health/article-5102355/amp/Crippling-toll-new-valium-ruining-lives-MILLIONS.html?amp_js_v=a2&_gsa=1&usqp=mq331AQCCAE%3D#referrer=https%3A%2F%2Fwww.google.com&_tf=From%20%251%24s&share=http%3A%2F%2Fwww.dailymail.co.uk%2Fhealth%2Farticle-5102355%2FCrippling-toll-new-valium-ruining-lives-MILLIONS.html
The choice, at the end of the day, is yours. xxxx
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Well if the Daily Mail says so then it must be true!!! I think I'll trust the NHS and NICE though.
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But did you read the article, Aspie - and have you seen the research papers?
The article quotes both Professor Iversen of The Advisory Council On Misuse of Drugs who has advised the Home Office, and Professor David Healey, a very eminent psychiatrist. Amongst others.
My old Psychiatrist (when I was seeing one) advised me that he will not prescribe Pregabalin for anxiety as he sees the huge problems it is causing now that it has 'hit the streets' as a drug of abuse. It is know as "Gabbies' up here in Scotland and is causing a huge headache to multiple agencies with the fallout. I know we are talking recreational abuse in that particular instance, but the studies are focusing on tolerance just the same as benzodiazepines and dependency in PRESCRIBED users. This is what concerns the professionals who are voicing their alarm - that GABA drugs will be the 'next valium', and no one saw that coming at the time!
I'm sorry if my opinions seem forceful and I don't want to frighten anyone, I just want you to all take care and be very, very careful.
I am also concerned about Racjen as she stated a short while ago that 'valium should be banned' after her experiences, yet is now using a drug with the exact same potential to cause dependency that affects the EXACT SAME receptors in the brain and has very powerful central nervous system modulatory effects.
As I said before though - it is absolutely the individual's choice. But please research thoroughly. Don't take a GP's word that these drugs are OK for long term use as they are not always well informed, nor a mental health crisis team. xxxx
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Thank you for your concern but I did extensive research as did racjen and I also spoke to some very highly respected doctors. They are of the strong opinion that this is all being played way out of proportion. It is a problem in recreational users and for those on very high doses (neither which apply to myself or racjen). Used sensibly it is a wonderful drug which is safe for long term use. It has been used for decades and long term studies clearly show no physical addiction or tolerance. There can be a psychological addiction but that is true for most drugs. There will always be some 'expert' with an opinion but long term, wide scale, extensive studies clearly disagree with the article's findings. I would advise caution of believing everything you read.
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Then I wish you both the very best of luck, and hope you continue to do well. ☺ xxxx
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Thankyou Tempest, I really appreciate your concern and if there was anything else I could take that helped and didn't have worrying possibilities for the future I would, but right now I think pregabalin is the only possibility for me to live anything like a normal life (and that was never going to be the case with diazepam, tolerance sets in so quickly...). I've also researched and not come up with anything as alarming as you're describing; I agree completely that GPs often aren't that knowledgable about these drugs, but two psychiatrists and my local pharmacist have suggested this drug without any of the kind of warnings you're mentioning, so they're either being over-exaggerated or a very closely guarded secret.
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Just for the record I've more or less been on a benzodiazepine for decades (clonazepam) - for sleep. I've varied the amount but almost never had to increase to more than the prescribed maximum for me .05 mgs. Once in a blue moon. Often going down to a quarter of this. Once I 'ran out' without realising and so went cold turkey - which according to most google searches is a very dangerous thing to do. I just felt quite weird but was otherwise fine.
I've stopped taking it for months at a time, and did 3 years ago, substituting Gabapentin, which worked very well for sleep. My then doctor was against me taking clonazepam and happy with me taking Gabapentin. I think If I hadn't started splitting the dose of Gabapentin this year, I'd still be on it, but it was splitting the dose throughout the day that got me in trouble. I'd be happy to stop clonazepam too, and will try to lower once again, using CBD instead if it works, although it's my understanding only the medical form is a sure fire sleep creator and that's not legal here. I know an Irish writer who gets his in Italy, and it's mailed to him (CBD oil with 6% THC).
I have a serious sleep disorder and if I lose sleep I get immediately ill and /or suicidal so it's critical for me, and if clonazepam is the way I get it, then so be it. I know however that it does not give me good regenerative sleep. I'm now trying Trazodone which is supposed to give structured sleep. I'm also now using Inositol and CBD for anxiety, and something is working - either these two, one of these two, or stopping taking gabapentin during the day. I was so desperate I did not try one thing first to see..... but happy that I'm not in a continual state of anxiety, so....
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Just a thought, SandJ - has your doctor ever referred you for a sleep study to get to the root cause of your sleep disorder, and to find an effective treatment? xxxx
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Tempest, no, she hasn't... I'm not sure I could even stand to have it done, with electrodes etc - I wake at the barest discomfort :-( But I can ask her what she thinks. I believe I know what the root cause is, I worked for 3 years in a 'sick' building, with my office right next door to the servers for an entire 35 story building - I used a professional EMF tester and the floor of my office registered off the scale right up to about 4 foot. This was the beginning of the sleep problems, although of course most doctors would not make that link or think it could be a cause. I also have tested incredibly low DHEAs - I mean incredibly low, for the last 15 years. Again here in the UK, no one thinks twice about this. So I'm sure there is some kind of imbalance. I'd say a year living in nature without stressors could fix things... but....