Sarita: I have experienced medication discontinuation syndrome 5 times in the last 2.5 years

[Sarita]

I did take my dose later than usual due to a death in our family this weekend. Saturday and Sunday I did not take my medicine until 2 am on Saturday and midnight on Sunday I usually take it at 10 pm. Could this be a reason why I got no sleep last night 😢

[ChessieCat]

It is most probably the stress of the death that is causing the insomnia.  I think if it was the reduction then it would have shown up earlier.  However, the different dosing times might have contributed to it.  The good thing is that you didn't miss any doses completely.

 

If it was me I would NOT be updosing.

 

If it was me I would be doing a lot of self care and using non drug techniques:

 

Sleep problems - that awful withdrawal insomnia

 

Non-drug techniques to cope

 

There is no guarantee that an updose would work because of the situational stress you are under at this time.  Also, you would not return to 150mg because you have already been on 135mg for 16 days and the brain will already have made some adaptations to the lower dose.  When doing an updose you increase by a small amount, not back to the previous dose (unless it is only a few days later).  It is better to do a small increase than to risk taking too much, because if you take too much it might make things words.  It takes about 4 days for a dose to get to full level and a bit longer for it to register in the brain. 

 

Information about updosing:  If you ever do an updose start with 1mg (at this stage of your taper, ie the higher doses, once you get lower you would reduce the amount, possibly to 0.5mg) and wait for 1 week then reassess.  And remember that the idea of an updose is not to get rid of the withdrawal symptoms completely it is to bring them to a bearable level.

[Sarita]

Thank you!!

[Sarita]

Hello and Happy New Year. December 2, I went down to 135 mg’s of Doxepin. I was getting 7 hours of sleep most nights, Jan. 10, I went down to 125 and now I am only getting and from then on I am only getting 4 hours of sleep. I’m feeling a little tired and anxious, but I am filling my days being productive and keeping my daily routine eating well and doing  a 30 minute slow paced workout. The worst symptom I have experienced coming off meds is chronic insomnia. I am currently sleeping 4 hours but  Will my sleep get better once I give my body enough time to adjust to the drop? Thank you in advance.

[Hopela]

Hi Sarita, I read your story. It's very maddening you weren't informed of withdrawals and that was some large doses you were put on too. I was just told there was a risk of underlying condition emerging if going off, knowing I had no such condition I requested as quick a tapering as possible to which they gave me a taper so quick it was impossible to which I started thinkng maybe I had an underlying condition until researching on the net. Very deceptive practice. I think your sleep will get better and if you can get some calm and rest in the meantime that is also restorative I think. Good luck.

[Neon]

Hello Sarita,

I hope you are doing well and getting some good sleep.

I can really relate to your story, for me too the insomnia is by far the worst symptoms. as long as I get some sleep I can cope with the crazy other stuff but once I stop sleeping it just ramps up.

It is really hard to stay calm and not freak out over it, I just keep reminding myself that I did not have this problem prior and that I can survive this, as many have, and eventually it will get better. But it is like my brain is in freak-out mode and it takes a lot to stay calm.. Then I try to think if I survive this, then I can do anything 🙂 

[Sarita]

@Neon@Hopela Thank you both for your kind words, in a time that I feel so alone, your words are very much appreciated. My Dr. put me back up to 135 and I am sleeping more now. I was exhausted and it’s hard keeping a job, taking care of my girls and finding time to take care of me, with little sleep, but I am a fighter and refuse to take to heart being told I need to take this medication for the rest of my life. That is not in the plans I have set for myself. I can do all things through Christ who strengthens me is a motto I have adapted to my daily life.  I need to mentally prepare myself for when I drop down again and maybe I’ll drop down 5 mg’s at a time next time. Maybe that will lessen the insomnia withdrawal a little. Thank you again for  your words of encouragement ❤️

[Neon]

Dear Sarita, I am glad to hear that you are sleeping better. It is so important, especially with everything else on your plate. I am sure you can stabilize a bit now especially since you know about alcohol and weed not helping in the process (we dont know so much in the beginning, right?). 

And in the meantime you can learn some coping techniques that will help once you drop down again. Hearing your story and given your life situation I would do it reaally slowly 😉

Wish you all the best

[saeed]

Hi Sarita,

 

hope you’re doing well, I read your story and I am very impressed by your courage. 
I found a few successful story about people coming off invega sustenna peacefully and this is very encouraging and I am glad you did it. 
insomnia is the worst withdrawals ever, I quit the invega shot as well last October I am facing sleep problem even though I am on zopiclone “Benzo sleeping pill” I am having a few hours of sleep. I know what does insomnia means. 
how you’re doing after you quit the shot if you recall when the positive change happened?! How you’re doing those days?

 

 

[BooBoo19]

Hello @saeed

 

I was just reading your post regarding insomnia, is it getting any better for you and if it did how one -did it take as the beast is now with me and I agree when you go to bed not knowing if you will sleep and replenish is very difficult - I am looking for hope that will get better!!! I also took 2 x zopiclone last night for some relief but am aware they can become addictive.  Any advice is gratefully received.

[saeed]

44 minutes ago, BooBoo19 said:

Hello @saeed

 

I was just reading your post regarding insomnia, is it getting any better for you and if it did how one -did it take as the beast is now with me and I agree when you go to bed not knowing if you will sleep and replenish is very difficult - I am looking for hope that will get better!!! I also took 2 x zopiclone last night for some relief but am aware they can become addictive.  Any advice is gratefully received.

Hi Booboo,

I am sorry to hear that you’re going through awful withdrawals, insomnia is the beast for sure.

I am not seeing improvement so far my sleeping hours are getting less with time and the zopiclone is not working anymore and this is another problem for me.

I had previous experience going off benzo two years ago and isn’t a joke, stay away from the benzo as much as you can.

I am looking for advice as well to extend my sleeping hours like you as doctors will prescribe another pill this is why I don’t tell them about it because they will ruin it with another chemical poison.

I read your story and remember my self going on and off from Ads to another, it’s hell and you need to take good care of your self.

I am not sure what to do with the insomnia I am hoping our sleeping hours will get better soon.

 

take care.

 

 

[BooBoo19]

Thanks @saeed

 

I was managing to get 5 hours but now I go to sleep absolute;y exhausted and sleep for 1 hour.  Hopefully it will improve for us both 😄

[saeed]

hi,

I am getting to worse sleeping hours as the drugs weaning off from my body and effecting me psychologically and my behaviour is been “hyper”.

Maybe it’s getting back to normal but I am not getting use to be up to this speed as have been too low.

should I hold my lexotanil taper until I get stable ?! Too many changes happening in me.

I am afraid benzo taper trigger more invega withdrawals?!

 

thank you.

 

 

[Sarita]

@saeed Hello and thank you for the kind words. When I was taken off the shot, the nurse practitioner at Emergence Health network did not wean me off gradually and I also cold turkey’d my antidepressant (Doxepin). A month passed and the chronic insomnia kicked in. Luckily, I was put back on Doxepin before losing my mind due to lack of sleep. At lower doses, Doxepin is used for insomnia. For 2 years I was put on all sorts of meds because according to “the system” I’m bi-polar. That was all bullsh*t!! Instead of them trying to help me with what was clearly medication discontinuation, they pumped me up with meds I never needed to begin with!! Yes, I had a manic episode, but looking back, it was a drug induced manic episode. I had started heavily smoking chronic marijuana and drinking very heavily as well, along with not eating well, or keeping good sleeping habits (a recipe for self destruction). It has been a year and a half and I am no longer on any antipsychotic medications or mood stabilizers and I am thriving. They fed me lies saying I could never be off these medications because I was bi-polar and look at me now, 1.5 years without the poisons they said I could not live without. I found this site a few years ago but did not become a member until I was at my wits end. With their help, I have been able to advocate for myself and I am now on 120 mgs of doxepin. I use to be on 150 milligrams and will continue to wean off slowly. Every time I make a drop, I experience sleep disturbance, but the insomnia is manageable. The first week, I sleep about 4 hours, second week 5 hours, third week 5.5 hours and on the fourth week I’m up to 6 hours. Then I hold for 2 weeks and drop again by 10 percent as recommended. It isn’t easy but I am determined to get my life back. When I was on mood stabilizers and antipsychotics, I was a shell of the person I use to be. Nothing gave me happiness and I could no longer feel any emotions. My body was all out of whack and my prolactin levels were out of control.  I too tampered with Xanax during episodes of insomnia but very quickly had to up my doses to help me sleep. I started at .5 and then had to go up because before you know it, you need more  Xanax to help you sleep. Luckily I stopped using that for sleep before it was too late.  I learned the hard way to never cold turkey medications, but if I hadn’t done that, I would still be on a cocktail of meds that I don’t need. What helped me the most is finding a higher power to help me push through, without that, my life would have taken a drastic turn for the worse. Not sure if this helps you in any way, but I hope you find some comfort in knowing that it can be done. Finding a Dr. who supports you is key, but sadly there are few to none. I wish you all the luck in the word, know that you are not alone ❤️

[Sarita]

I could really use some advise. I did another drop at the end of April. Since I started dropping my dose, I noticed a pattern. The first week I drop I sleep 4 hours. Then as the weeks pass I get better sleep. By week 6 to week 8 I am back up to 6 hours. I did my last drop on April 29th and started drinking warm tea at night. This time, my sleep did not get better, but managed to get by on 4 hours of sleep. On the 17 of May I only got 3 hours of sleep. I made the mistake of trying to play it out thinking it would get better but By Friday the 21 I got 0 sleep. My dr suggested I go back up to 120. Then the 21st I went back up to 120 with no luck, I am currently on 0 sleep. I went through my journal to see what I had done differently and I noticed I started drinking tea at night. At first I thought it was regular green tea, I have a big jar filled with tea bags and didn’t notice that I was taking sleepy time tea which is filled with all sorts of herbs to help with sleep.  Is it possible that I have unintentionally altered my medicine with the tea I have been drinking? I stopped taking the teas last week. Not sure what I can do at this point. Any advise would be very much appreciated!!

[Sarita]

@ChessieCati was hoping I could get some advise. My last drop was April 29th . I was on about 4 hours of sleep and last week I had a few nights of no sleep. Looking back , I think I was just very anxious that I was on week 3 for my taper and my sleep was not getting better. When my Dr told me to go back up to 120 (went up on the 21st , my sleep got better on Monday, went from 0 back to about 4 hours. I’m not sure, I was trying not to obsess with my sleep, for I think doing this causes disturbance in my sleep. Since Monday, I get brain zaps which use to occur when I was on 150 milligrams. My question is, should I go back to 110 and play it out, or stay at 120 and deal with the brain zaps. The brain zaps are tolerable but I really don’t know what to do. Can you please give me some guidance??? 

[Sarita]

@Altostrata I am really sorry to bother you but I was hoping I could get some advise.  I did another drop at the end of April. Since I started dropping my dose, I noticed a pattern. The first week I drop I sleep 4 hours. Then as the weeks pass I get better sleep. By week 6 to week 8 I am back up to 6 hours. I did my last drop on April 29th and started drinking warm tea at night. This time, my sleep did not get better, but managed to get by on 4 hours of sleep. On the 17 of May I only got 3 hours of sleep. I made the mistake of trying to play it out thinking it would get better but By Friday the 21 I got 0 sleep. My dr suggested I go back up to 120. Then the 21st I went back up to 120 with no luck for the fist two days.  I went through my journal to see what I had done differently and I noticed I started drinking tea at night. At first I thought it was regular green tea, I have a big jar filled with tea bags and didn’t notice that I was taking sleepy time tea which is filled with all sorts of herbs to help with sleep.  I stopped taking the teas last week. My last drop was April 29th . I was on about 4 hours of sleep and last week I had a few nights of no sleep. Looking back , I think I was just very anxious that I was on week 3 for my taper and my sleep was not getting better. When my Dr told me to go back up to 120 (went up on the 21st , my sleep got better on Monday, went from 0 back to about 4 hours. I’m not sure, I was trying not to obsess with my sleep, for I think doing this causes disturbance in my sleep. Since Monday, I get brain zaps which use to occur when I was on 150 milligrams. My question is, should I go back to 110 and play it out, or stay at 120 and deal with the brain zaps. The brain zaps are tolerable but I really don’t know what to do. Can you please give me some guidance??? 

[Altostrata]

It is unlikely the tea is related to your symptoms, though if you have sleep problems, you may wish to avoid caffeine in green tea at night.

 

Since you went back to 120mg doxepin 5 days ago, how has your symptom pattern changed?

 

When do you get brain zaps? Before or after you take doxepin? Do you get them at the same time each day? What time o'clock? What time of day do you take doxepin? Have you been taking it at the same time each day?

[Sarita]

@AltostrataI apologize for being all over the place. The tea I was drinking did not have caffeine, it was sleepy time tea. Every drop I’ve made comes with sleep disturbance. I sleep 4 hours of which has usually aliviated within a couple of weeks. This last drop I was on week 4 with still only 4 hours, last week I started sleeping less than that . I had my dates wrong I looked at my journal and I went up to 120 on Sunday May 23st, slept 4 hours with no problems. Same on Monday.  I tried not to updose but was scared to get full blown insomnia and my symptoms told me I was heading that way, I was getting less sleep and wasn’t getting tired. On Tuesday May 25, I took my medicine at 10 and had brain zaps about an hour after taking it. I had about 6 that lasted maybe 3 seconds and then fell asleep at about 12:30. Yesterday night I took my medicine at 10:30 and had brain zaps an hour after taking it, about 5 or 6 but this time, I didn’t fall asleep until after 1:30 and slept maybe 4 hours. Today I laid down when I got home from work, not because I was tired just to rest my mind and I had several brain zaps but these were different, they made my whole head jolt. I had about 5 and then I got up and it went away. Most days I take my medicine at 10 and sometimes 10:30

[Sarita]

@Altostrataim sorry, I have my days all mixed up. I’m having such a hard time concentrating and keeping track of my days

[Altostrata]

If you did not have the brain zaps at the lower dose, you may wish to reduce your dose to 115mg doxepin and see if that helps. If I were you, I would not continue to taper if your sleep is insufficient from the prior reduction.

[Sarita]

@Altostratathe problem is I can’t get in to see my Dr until June 24 and the smallest dose I am currently prescribed come in 10 milligram capsule, so I am stuck with either go back to 110 or stay at 120 🥲

[Sarita]

@Altostratabut thank you, I will not taper for a long time after this

[Altostrata]

See Tips for tapering doxepin (Sinequan, Zonalon)

[Sarita]

@ Good morning. I stayed on 120 last night with no brain zaps. I only slept 2 hours. My Dr wants me to go up to 125 mgs tonight and possibly higher if my sleep does not stabilize. 

[Sarita]

@AltostrataGood morning. I stayed on 120 last night with no brain zaps. I only slept 2 hours, 2 hours less than the night before. My Dr wants me to go up to 125 mgs tonight and possibly higher if my sleep does not stabilize. 

[Altostrata]

If I were you, I would not increase dosage, since that seems to cause brain zaps. I would be patient and let my sleep stabilize. This probably will take a couple of weeks, maybe more.

[Sarita]

@Altostrata I didn’t get brain zaps last night on 120, I had them for 2 days that only occurred an hour after I took medicine and last night nothing. What if I get chronic insomnia, which means 0 sleep for weeks.  How do I survive that and end up not being hospitalized or put on other drugs? Thank you so much for your advise. I will do exactly what you have suggested 🙏

[Sarita]

@Altostratai also joined a very intense gym that is like boot camp for 30 minutes 4 times a week. Being that I don’t feel tired, would it be ok to continue, it brings me much peace, even if it’s only 30 minutes

[Altostrata]

If the exercise makes you feel better, I would continue it.

 

We won't know if you get chronic insomnia until you get chronic insomnia.

 

If your insomnia started when you reduced a drug, it's probably a withdrawal symptom. If you're not taking anything that might keep you awake, such as too much doxepin, you'll gradually go back to sleeping in a couple of weeks, as your nervous system settle down.

 

How do you feel before and after taking doxepin?

[Sarita]

@AltostrataI was very lucky, I slept a total of three hours Friday night, my sleep was light and not consecutive but I was grateful to get even that. Then yesterday I slept a consecutive 4 hours. The only symptoms I have is sleep disturbance and then the regular anxiety that comes from that, but if there is anything my journey has taught me is coping mechanisms, I do not let the anxiety consume me anymore , I’ve learned that only makes my situation worse. Plus, it helps that I’m a teacher and my students keep me busy, so I don’t have time to overthink things. Working out 4-5 times a week of rigorous exercise works for me and I make sure to eat well. I’ve lost 8 pounds in 5 weeks and feel great. When I am on 4 hours of sleep I feel energized. My Dr. said that when my body is not getting enough sleep, my body releases a stress hormone which is the reason for my alertness. Once I start getting 5 hours or more, I’m thinking I didn’t give my body enough time to recover.  I had dropped 40 milligrams since December 2, 2021 and I’m thinking I maybe should have held a little longer between drops. Lesson learned. I just don’t know when would be a safe time to drop again. Doxepin comes in 3 mg tablets. I will discuss maybe dropping 6 milligrams at a time instead of 10 milligrams Thank you soooooo much for your help. I’m so glad I didn’t listen to my Dr and go up any further. A million times thank you!!! This journey is so much easier knowing I am getting assistance by people who know what I am going through ❤️🙏 I pray for this platform and the people involved. Off the subject , I have done grant writing in my past, is there anyway I can help?

[Altostrata]

Yes, you might need smaller decreases to preserve your sleep while you taper, but you may be able to make them more often.

 

If I were you, I'd be sure my sleep was stable for a good while before tapering again.

[saeed]

On 4/13/2021 at 7:16 AM, Sarita said:

@saeed Hello and thank you for the kind words. When I was taken off the shot, the nurse practitioner at Emergence Health network did not wean me off gradually and I also cold turkey’d my antidepressant (Doxepin). A month passed and the chronic insomnia kicked in. Luckily, I was put back on Doxepin before losing my mind due to lack of sleep. At lower doses, Doxepin is used for insomnia. For 2 years I was put on all sorts of meds because according to “the system” I’m bi-polar. That was all bullsh*t!! Instead of them trying to help me with what was clearly medication discontinuation, they pumped me up with meds I never needed to begin with!! Yes, I had a manic episode, but looking back, it was a drug induced manic episode. I had started heavily smoking chronic marijuana and drinking very heavily as well, along with not eating well, or keeping good sleeping habits (a recipe for self destruction). It has been a year and a half and I am no longer on any antipsychotic medications or mood stabilizers and I am thriving. They fed me lies saying I could never be off these medications because I was bi-polar and look at me now, 1.5 years without the poisons they said I could not live without. I found this site a few years ago but did not become a member until I was at my wits end. With their help, I have been able to advocate for myself and I am now on 120 mgs of doxepin. I use to be on 150 milligrams and will continue to wean off slowly. Every time I make a drop, I experience sleep disturbance, but the insomnia is manageable. The first week, I sleep about 4 hours, second week 5 hours, third week 5.5 hours and on the fourth week I’m up to 6 hours. Then I hold for 2 weeks and drop again by 10 percent as recommended. It isn’t easy but I am determined to get my life back. When I was on mood stabilizers and antipsychotics, I was a shell of the person I use to be. Nothing gave me happiness and I could no longer feel any emotions. My body was all out of whack and my prolactin levels were out of control.  I too tampered with Xanax during episodes of insomnia but very quickly had to up my doses to help me sleep. I started at .5 and then had to go up because before you know it, you need more  Xanax to help you sleep. Luckily I stopped using that for sleep before it was too late.  I learned the hard way to never cold turkey medications, but if I hadn’t done that, I would still be on a cocktail of meds that I don’t need. What helped me the most is finding a higher power to help me push through, without that, my life would have taken a drastic turn for the worse. Not sure if this helps you in any way, but I hope you find some comfort in knowing that it can be done. Finding a Dr. who supports you is key, but sadly there are few to none. I wish you all the luck in the word, know that you are not alone ❤️

Hi Sarita,

 

thank you for your kind words and encouraging example. 
i am sorry for the late reply, I have been off the site struggling with withdrawals, and thought to be away focusing on the positive things to help me coping with symptoms.

 

I hope you’re doing well, you are strong women and I am very proud of you, you’ve been through very tough journey like we all do. I am glad you made through previous meds. 
 

I just felt somehow better than months of hell and thought to check on you guys.

 

You’re brave I am still on the benzos and lately lamicital, as I was extremely desperate and wanted a relief I took the lamicital as per the doc. insistence I was out of my mind and had to believe those pills will give a peace for awhile a break from the Pain I am wrong I added another stone on my head.

 

take care of yourself, looking forward to read your success story.

 

thanks,
 

I learned  

[Sarita]

@AltostrataGood morning, since June 1sr I started to slowly stabilize. I was up to 5 hours of sleep. On June 12, this past Saturday I added 250 mgs of sleep and have worked my way up to 1000 mgs of fish oil. For the first 3 days I felt I got more sleep, maybe 5.5. On Monday, June 14 I got my refill of doxepin and noticed it was a different color. I didn’t think anything at the time but noticed I was wired and very sweaty. Both days I continued with a very rigorous 30 minute work out and noticed last 2 nights I have gotten less sleep. Monday 4 hours and last night 3. I called my pharmacy and was notified the meds they had just refilled were from a different manufacturer. I’m wondering if this could be the reason why my sleep has gotten worse these past few days. I feel I was already unstable and my body is telling me I am becoming less stable as the days go by. I’m wondering if all the changes to an already unstable nervous system is creating havoc. I am going to stop exercising so rigorously today see if maybe that is a factor. Also, could the magnesium be causing the sleep disturbance? I called my Dr. and left a message to see if they can prescribe the Doxepine from the manufacturer I was getting it from before but I have not heard back . You f I do not stabilize my dr wants me to go up to 130 because my insurance does not cover the 3 mg tablets. I am currently on 120. Do I wait it out until I am completely on 0 hours of sleep to go back up? Your advice would be greatly appreciated 

[Sarita]

@Altostrata and I meant I have added 250 mgs of magnesium along and have worked my way up to 1000 ms fish oils that I take 1 hour before I take Doxepine

[Altostrata]

On 6/16/2021 at 9:33 AM, Sarita said:

I am going to stop exercising so rigorously today see if maybe that is a factor.

 

Good idea. Is it very hot where you are?

 

On 6/16/2021 at 9:33 AM, Sarita said:

f I do not stabilize my dr wants me to go up to 130 because my insurance does not cover the 3 mg tablets. I am currently on 120.

 

This does not make sense. Why does your doctor want to increase your dosage? You were doing better before the change in brand. How are you going to use 3mg tablets? You don't need them, you can use a liquid in combination with a 100mg tablet.

 

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