5.5 years since I started taper - still have horrible insomnia

[[oc...]]

Hey! I havnt posted here in a long time  - kinda got to a point where I felt like posting really didnt get me anywhere and I didnt just want to be complaining about the same thing over and over. But tonight I thought I would make a post and maybe someone on here who is going thru a tough time might take some comfort in a post aobut my insomnia.  Maybe someone is going thru a lot of insomnia and they feel that years of this will be super detrimental to their health. 

I was on topamax or depakote for close to 30 years and was on a pretty high dose. So i think thats why my taper and insomnia were so severe. In the year before my taper I started developing auto immune issues. But these mostly cleared up after tapering from the medicine and taking the correct supplements. I still have a few symptoms of my auto immune but it was nothing like it was before. 

I started my taper in Sept  2018 and finished in summer 2020 or 2021 ( i cant remember which)  and I had just about every withdrawal symptom there was. But through out it all insomnia has been def the worst. I am now 5.5 years into this and the insomnia is still horrible. I still get zero hour nights ( usually once or twice a week) and the rest of the time I am lucky to get 2-4 hours. Once in a blue moon  I might actually get one or two nights of 6 or 7 hours BUT that usualyl only happens after weeks and weeks of sleepness nights. 

Weirdly enough, my sleep is usually better in the spring and early summer months and slowly worsens up to about the xmas season. I'm not sure why its worse in the fall and winter months - maybe it has something to do with circadian rhythms andthe short daylight hours. Who knows. But usually by xmas my insomnia is at its worse. 

The first couple years of my taper I never slept. I would go days and days with zero sleep - I had a stretch of 9 days at one time with zero sleep BUT that was during the worse part of my taper. 

So, let me say this if you are someone who is going thru months and months of insomnia and you are afraid of what it might do to you - I can just say stay positive and try not to worry about it too much.  Just try and keep and support you immune system. Take plenty of stuff like ginger, tumeric, garlic, magnesium etc... I get a lot of colds when Im not sleeping. 

I used to read stuff like long term insomnia caused cognitive decline but thats just not true. Ive had no problems with any of that *knock on wood* 

I have tried everything for sleep but very little helps - I have noticed that if I eat later in the evening I am usually sleep worse. I normally dont eat after 6pm. I take magnesium glysonate during a few tiems during the day but I really dont know it helps. 

I will say that prayer helps a lot. I know that there has been nights when my insomnia was horrible and anxiety was thru the roof and saying my prayer actually calmed me down and allow me to sleep some. It helps to know that there is a higher power who might have a plan for us all. 

I hope that helps someone out there who is dealing with long term insomnia and they dont know what to do.

I wish you all well! 

 

Edited February 19 by [oc...]

[[Th...]]

Sorry you are still suffering.  I hope Gonzo and Xray read this as they say there is no one on this forum that has had insomnia longer than a few years.

Edited February 19 by [Th...]

[[ro...]]

19 months since a ct of a long term prescription. I’m lucky if I sleep 2 hours a night. I’ve developed autoimmune issues as well. Sleep no longer exists or makes sense

[[oc...]]

1 hour ago, [[T...] said:

Sorry you are still suffering.  I hope Gonzo and Xray read this as they say there is no one on this forum that have had insomnia longer than a few years.

Honestly I think that most people that have isomnia this long just give up trying to find answers for it - for me I know that when I came to benzobuddies no one could really relate to having insomnia this long. The longest I saw was MTfan ( i think that was the name) and hers lasted 2 years. 

I guess its just gonna take some time. 

[[oc...]]

40 minutes ago, [[r...] said:

19 months since a ct of a long term prescription. I’m lucky if I sleep 2 hours a night. I’ve developed autoimmune issues as well. Sleep no longer exists or makes sense

Just make sure you are taking care of your health by eating proper foods and taking good supplements for your health. My autoimmune issues started before my taper and went way for the most since the taper. I have a few symptoms of my autoimmune here and there. 

Just hang in there! 

[[Th...]]

MTFan's insomnia lasted a lot longer than 2 years...it was closer to 5.

[[oc...]]

I thought I remembed her saying 2 years but ill go back and check. 

[[Th...]]

She said she started with Severe insomnia in 2012 and did not write a success story until 2019.  She also said she's had insomnia on and off since 12 years old.  She had insomnia long before she took Benzos and other psych drugs and for a long time while on Benzos and other psych drugs.  I know it's not a "contest" to see who can have insomnia the longest, but it always seems as if someone has it worse than we did or do.  Peace!

Edited February 20 by [Th...]

[[oc...]]

Pls explain to me how this can be zero sleep for so long? I have had stretches of zero sleep 5 nights and 3nights etc ...along with pain (neck and gut) so bad I was writhing on the floor getting packed for er. I mean zero cuz I recall every second of the night. Now if I get zero or 1-2 hours im in a panic and feel like I'm dying. Still in klonopin and getting jerks/muscle twitches all night so maybe I'm getting less sleep than I think. Pls advise on how to cope as the muscle twitches/jerks is making me lose my mind. It's been a year and I don't know how I  have survived. Ty all

Edited February 21 by [oc...]

[[Th...]]

Unfortunately things do not begin to get better for most people until you are completely off.  It looks like you are still on Klonopin?  Please, please, please avoid the urge to go to the ER.  ER's are for stabilizing care only for life-threatening conditions, they are NOT for treating Benzo-withdrawal symptoms.  I found out the hard way by going to 4 different ERs over a 6 week period.  The only thing they will do is offer you more Rx drugs--and most of the time it is another Benzo!!!!  

There is a group of people on this forum that "hate" when I say "lack of sleep will not kill you." But it's true.  You won't die from a TEMPORARY lack of sleep.  That doesn't mean that you shouldn't do whatever you can to get the most amount of sleep each night, but that most likely means taking something other than a Benzo for sleep! I had success with Seroquel, but it left me feeling really hung over with lots of brain fog the next day so I stopped taking that too.  

I too had many stretches of zero sleep for 3 - 4 nights in a row at least 10+ times.  It slowly gets better.  How much K are you still on?  Are you tapering off?

I'd read this post as it could answer most of your questions.  Peace

https://benzobuddies.org/topic/270442-2400-days-off-my-insomniabenzo-advice/page/4/#comment-3489675

 

Edited February 22 by [Th...]

[[Ne...]]

I am going on 32 months since CT from 3 weeks use and my sleep has not yet returned back to where it was.  I use to sleep uninterrupted for 8 hours all the time before benzo and now the longest stretch is 2.5 hours.  I wake up several times but am able to get back to sleep.  It is improving but very slowly.  As I was told by a benzo buddy early on, I won’t die from not sleeping and acceptance has gone a long way for me.  My only other lingering symptom is tinnitus.  Deep breathing and listening to calming music with a set bedtime schedule seems to help me a lot.

[[ma...]]

On 19/2/2024 at 15:26, [[o...] said:

Sinceramente, creo que la mayoría de las personas que padecen isomnio durante tanto tiempo simplemente desisten de intentar encontrar respuestas. Para mí, sé que cuando llegué a benzobuddies nadie podía identificarse con tener insomnio durante tanto tiempo. La que más tiempo vi fue MTfan (creo que ese era el nombre) y la de ella duró 2 años. 

Supongo que llevará algo de tiempo.

Hello Oceano 34, I am very sorry for your suffering, this is really terrible.Since I took my last bit of clonazepa it has been 23 months, almost 24. I have not had a normal night, a maximum of 5 interrupted hours.Today I suffer a setback and I have been like this for almost a month with barely 2 hours most nights.I take supplements and lead a healthy life, no sugar or flour and I do weight training.Nothing seems to work, I'm really desperate, I look older, and all this pain from 7 months of consumption.I have always been healthy. And to think that these poisons continue to be prescribed is insane.Ruining people's lives for so long, even though there are many people who don't have the same thing happen to them.As long as this serious risk exists, they should restrict these dangerous drugs.The package insert says that it can cause withdrawal, but do they inform you of the symptoms of withdrawal and how long you risk suffering from it?In my case, they neither warned me about this nor asked me to stop suddenly.It's a shame instead of doctors they are simply drug dispensaries.They forgot the doctrine, first do no harm.I send you a hug and let's pray that this happens before we suffer from any irreversible illness due to not sleeping.Kisses and encouragement!!

[[ma...]]

On 19/2/2024 at 20:21, [[T...] said:

El insomnio de MTFan duró mucho más de 2 años... estuvo más cerca de 5.

My God!! Spooky!! I have been taking my last piece of pill for almost two years.It's very scary to think that it could continue like this for 3 more years.Why is this not made public and these criminal acts reported?I am sure that if we all reported it they would have no choice but to listen to us and the best thing would come to light and more people would know.People don't know it and they don't believe it.It is awful!!

[[ma...]]

On 21/2/2024 at 22:36, [[o...] said:

Por favor, explícame cómo esto puede significar que no duermas durante tanto tiempo. He tenido períodos sin dormir durante 5 noches y 3 noches, etc. junto con un dolor (cuello e intestino) tan intenso que me retorcía en el suelo haciendo las maletas para siempre. Me refiero a cero porque recuerdo cada segundo de la noche. Ahora, si tengo cero o 1 o 2 horas, entro en pánico y siento que me estoy muriendo. Sigo tomando klonopin y tengo sacudidas/espasmos musculares toda la noche, así que tal vez estoy durmiendo menos de lo que creo. Por favor, aconséjeme sobre cómo afrontarlo, ya que las contracciones y sacudidas musculares me hacen perder la cabeza. Ha pasado un año y no sé cómo he sobrevivido. gracias a todos

I was suffering from these jerks and spasms for over a year. They started before stopping clonazepa, I didn't know it was tolerance withdrawal, after stopping the drug It was reduced but very little by little.Until you stop it completely, you will continue to suffer from them.Courage and strength!!

[[oc...]]

6 hours ago, [[m...] said:

I was suffering from these jerks and spasms for over a year. They started before stopping clonazepa, I didn't know it was tolerance withdrawal, after stopping the drug It was reduced but very little by little.Until you stop it completely, you will continue to suffer from them.Courage and strength!!

Marisa, thank you. did you have involuntary muscle fasciculations twitching all the time along with the jerks? It's random muscle popping and electric jerks and movements that wake me thru the night. I am on Klonopin for sleep and how do I get off them when I cannot sleep? Only getting a few hours with .5. when I tapered down to .125 it was unbearable and Dr updosed me to get more sleep. I feel screwed to keep on it. Sorry for the negativity 

[[ma...]]

44 minutes ago, [[o...] said:

Marisa, gracias. ¿Tuviste fasciculaciones musculares involuntarias que se contraían todo el tiempo junto con las sacudidas? Son chasquidos musculares aleatorios y sacudidas y movimientos eléctricos los que me despiertan durante la noche. Estoy tomando Klonopin para dormir y ¿cómo puedo dejarlo cuando no puedo dormir? Solo tengo unas pocas horas con .5. cuando bajé gradualmente a .125 fue insoportable y el Dr. me recetó una dosis mayor para dormir más. Me siento jodido por seguir así. Perdón por la negatividad There is nothing to apologize, we have no reason to be happy.

There is nothing to apologize, we have no reason to be happy.They have screwed us and well.Yes, I had countless involuntary movements that woke me up, my arms, head, legs, even my belly.I had countless zero nights, at first I couldn't stop crying, but there comes a time when I think you adapt, even though it is very hard, the zero nights little by little became On two nights, then the jerks and muscle spasms went away, they came back sporadically.Until they disappeared.Then I was awake many nights for 2 hours and 2 hours.With setbacks that did not last more than two days.Now I have a setback of a month, let's hope it passes quickly.When I wake up I read things that interest me so I don't spend the whole night thinking about not falling asleep.Cheer up, that will happen.

[[ma...]]

53 minutes ago, [[o...] said:

Marisa, gracias. ¿Tuviste fasciculaciones musculares involuntarias que se contraían todo el tiempo junto con las sacudidas? Son chasquidos musculares aleatorios y sacudidas y movimientos eléctricos los que me despiertan durante la noche. Estoy tomando Klonopin para dormir y ¿cómo puedo dejarlo cuando no puedo dormir? Solo tengo unas pocas horas con .5. cuando bajé gradualmente a .125 fue insoportable y el Dr. me recetó una dosis mayor para dormir más. Me siento jodido por seguir así. Perdón por la negatividad 

You will improve completely until you stop.I wouldn't increase the dose but don't reduce it for a while either.Did you read the Asthon manual?It says that it is better to stay at the same dose than increase it again.Cheer up!!

[[oc...]]

4 minutes ago, [[m...] said:

You will improve completely until you stop.I wouldn't increase the dose but don't reduce it for a while either.Did you read the Asthon manual?It says that it is better to stay at the same dose than increase it again.Cheer up!!

Marisa, thank you for the words of encouragement. Yes I will be strong and courageous . I have read the Ashton manual and dearly wanted to stay at .125 but multiple Dr said updose to .5 and that I need to sleep and reduce jerks. I did get some 3-5 hours of sleep this week  For me, fear and anxiety was caused* by the insomnia.  Everyone says the jerks lessens when I get off completely I want off but there is no transition plan. When I self tapered to .125 it was hundreds of scary shocking jerks giving zero sleep.... I need sleep, i will lose my sanity.  I've been there and cannot go back to that mental place. Thank you and I will cheer up. I swear I was such a a happy and healthy lady before the injury and insomnia and poly drugged. Therapist said stay away from this site. But taking a klonopin nightly for 9 months and waiting for me to sleep to return and cns to reset seems like wishful thinking. Idk

[[ma...]]

3 hours ago, [[o...] said:

Marisa, gracias por las palabras de aliento. Sí, seré fuerte y valiente. Leí el manual de Ashton y quería permanecer en .125, pero varios doctores dijeron que subí la dosis a .5 y que necesito dormir y reducir las sacudidas. Dormí entre 3 y 5 horas esta semana. Para mí, el miedo y la ansiedad fueron causados* por el insomnio. Todo el mundo dice que los tirones disminuyen cuando me excito por completo. Quiero hacerlo, pero no hay un plan de transición. Cuando me reduje a .125, fueron cientos de sacudidas aterradoras e impactantes que no me dieron sueño... Necesito dormir, perderé la cordura. He estado allí y no puedo volver a ese lugar mental. Gracias y me animaré. Juro que era una mujer feliz y saludable antes de la lesión, el insomnio y la polidrogo. El terapeuta dijo que se mantuviera alejado de este sitio. Pero tomar un klonopin todas las noches durante 9 meses y esperar a que me duerma para volver y que el sistema nervioso central se reinicie parece una ilusión. No sé

I understand you perfectly, I think that if you were able to rest with that new dose, you should maintain it for a while To then continue with a very slow reduction.If you stay stuck, you will suffer withdrawal symptoms due to tolerance again until you need to increase the dose again.I would do it like this, I stay at it for a while and reduce very slowly.All this is very terrible, how they have ruined our lives.I send you a hug, friend.

[[Bu...]]

@[oc...]

Thank you so much for posting this!  I really needed the encouragement today about insomnia.  I also really needed to hear the part about autoimmune issues.  I have been misdiagnosed over and over regarding autoimmune.  First I was told Lupus, then Undifferentiated Connective Tissue Disease, then Sjogrens, then RA.  I never really fit any of them and my symptoms keep changing, so hence the revolving door of diagnosis.  Not a single doctor ever said or has said even now, that it could all be from my long clonazepam use, but I really think that might be it as some of those auto immune symptoms are gone now.  I think you're the first person I've run across that has mentioned it specifically.  So, thank you again.

[[oc...]]

On 23/02/2024 at 05:30, [[m...] said:

Hello Oceano 34, I am very sorry for your suffering, this is really terrible.Since I took my last bit of clonazepa it has been 23 months, almost 24. I have not had a normal night, a maximum of 5 interrupted hours.Today I suffer a setback and I have been like this for almost a month with barely 2 hours most nights.I take supplements and lead a healthy life, no sugar or flour and I do weight training.Nothing seems to work, I'm really desperate, I look older, and all this pain from 7 months of consumption.I have always been healthy. And to think that these poisons continue to be prescribed is insane.Ruining people's lives for so long, even though there are many people who don't have the same thing happen to them.As long as this serious risk exists, they should restrict these dangerous drugs.The package insert says that it can cause withdrawal, but do they inform you of the symptoms of withdrawal and how long you risk suffering from it?In my case, they neither warned me about this nor asked me to stop suddenly.It's a shame instead of doctors they are simply drug dispensaries.They forgot the doctrine, first do no harm.I send you a hug and let's pray that this happens before we suffer from any irreversible illness due to not sleeping.Kisses and encouragement!!

Thank you. And im sorry you are having such a hard time. It will get better. I get pretty mad too about the doctors prescribing this poison to people and then lying about it. 

 

I also workout, run and lift weights. I find that on days where i lift weights i sleep a little better. But on the days that I run I tend to be up more. Running seems to amp me up more than I already am. But exercising is very good for my mind. 

Hang in there! 

Edited February 25 by [oc...]

[[oc...]]

21 minutes ago, [[B...] said:

@[oc...]

Thank you so much for posting this!  I really needed the encouragement today about insomnia.  I also really needed to hear the part about autoimmune issues.  I have been misdiagnosed over and over regarding autoimmune.  First I was told Lupus, then Undifferentiated Connective Tissue Disease, then Sjogrens, then RA.  I never really fit any of them and my symptoms keep changing, so hence the revolving door of diagnosis.  Not a single doctor ever said or has said even now, that it could all be from my long clonazepam use, but I really think that might be it as some of those auto immune symptoms are gone now.  I think you're the first person I've run across that has mentioned it specifically.  So, thank you again.

I am glad that the post helped you. When I started having autoimmune issues in early 2018 I had a pretty good idea it was caused from long time use of the medication I was on and when I went to read about Topamax it was reported that long term use cause Lupus and other auto immune issues and in some cases it could cause cancer.  We are basically poisoning our bodies when we take these meds long term - just gotta catch when we can and do our best to reverse the damage. The doctors will never admit that the "medicines" that they are prescribing can hurt us - then they would be liable. So they blame everything but the "medicine".

I have come to accept the insomnia more. There are times when I do get pretty crazy after long spells of little to no sleep but I have come to accept it for the most part and just make the best of it. 

Good luck to you and keep moving forward. It will all work out in the end! 

 

Edited February 25 by [oc...]

[[oc...]]

On 21/02/2024 at 16:36, [[o...] said:

Pls explain to me how this can be zero sleep for so long? I have had stretches of zero sleep 5 nights and 3nights etc ...along with pain (neck and gut) so bad I was writhing on the floor getting packed for er. I mean zero cuz I recall every second of the night. Now if I get zero or 1-2 hours im in a panic and feel like I'm dying. Still in klonopin and getting jerks/muscle twitches all night so maybe I'm getting less sleep than I think. Pls advise on how to cope as the muscle twitches/jerks is making me lose my mind. It's been a year and I don't know how I  have survived. Ty all

I never had the neck pain but I had the stomach pain.

I felt like I was being stabbed in the gut for hours at a time. I would be laying in bed doubled over with the pain. I also had the jerks as well. For the first year and half everytime I would be close to getting some sleep it would feel as if someone pushed me hard in the back - sometimes the jerks would be so bad that I would bit my tongue. It finally went away tho.  

Keep going - it will get better! 

[[Gi...]]

On 19/02/2024 at 02:17, [[o...] said:

Hey! I havnt posted here in a long time  - kinda got to a point where I felt like posting really didnt get me anywhere and I didnt just want to be complaining about the same thing over and over. But tonight I thought I would make a post and maybe someone on here who is going thru a tough time might take some comfort in a post aobut my insomnia.  Maybe someone is going thru a lot of insomnia and they feel that years of this will be super detrimental to their health. 

I was on topamax or depakote for close to 30 years and was on a pretty high dose. So i think thats why my taper and insomnia were so severe. In the year before my taper I started developing auto immune issues. But these mostly cleared up after tapering from the medicine and taking the correct supplements. I still have a few symptoms of my auto immune but it was nothing like it was before. 

I started my taper in Sept  2018 and finished in summer 2020 or 2021 ( i cant remember which)  and I had just about every withdrawal symptom there was. But through out it all insomnia has been def the worst. I am now 5.5 years into this and the insomnia is still horrible. I still get zero hour nights ( usually once or twice a week) and the rest of the time I am lucky to get 2-4 hours. Once in a blue moon  I might actually get one or two nights of 6 or 7 hours BUT that usualyl only happens after weeks and weeks of sleepness nights. 

Weirdly enough, my sleep is usually better in the spring and early summer months and slowly worsens up to about the xmas season. I'm not sure why its worse in the fall and winter months - maybe it has something to do with circadian rhythms andthe short daylight hours. Who knows. But usually by xmas my insomnia is at its worse. 

The first couple years of my taper I never slept. I would go days and days with zero sleep - I had a stretch of 9 days at one time with zero sleep BUT that was during the worse part of my taper. 

So, let me say this if you are someone who is going thru months and months of insomnia and you are afraid of what it might do to you - I can just say stay positive and try not to worry about it too much.  Just try and keep and support you immune system. Take plenty of stuff like ginger, tumeric, garlic, magnesium etc... I get a lot of colds when Im not sleeping. 

I used to read stuff like long term insomnia caused cognitive decline but thats just not true. Ive had no problems with any of that *knock on wood* 

I have tried everything for sleep but very little helps - I have noticed that if I eat later in the evening I am usually sleep worse. I normally dont eat after 6pm. I take magnesium glysonate during a few tiems during the day but I really dont know it helps. 

I will say that prayer helps a lot. I know that there has been nights when my insomnia was horrible and anxiety was thru the roof and saying my prayer actually calmed me down and allow me to sleep some. It helps to know that there is a higher power who might have a plan for us all. 

I hope that helps someone out there who is dealing with long term insomnia and they dont know what to do.

I wish you all well! 

Regarding your sleep being better in spring and summer, have you checked your vitamin D level? I find that consistent/healthy exposure to the sun does make me sleepy at night. This is also documented that vitamin D helps with insomnia. 

[[Jo...]]

I had my blood checked and did a hormone panel and my DHEA was low and my vitamin d levels were extremely low. Sleep deprivation will cause both of these to be low and it wouldn’t hurt to try to see endocrinologist and get do a complete blood panel. I would also do a cortisol test too to see what your levels are which I’m sure they may be a little higher too. Cortisol manager supplants have helped me out a lot. I’m a lot more mellow now and just in a fuck it mode and honestly I think it is helping my sleep.