What medicines work for your insomnia? I am already taking amitriptyline (a sedating antidepressant), which helps … but I also am now taking lorezapam (ativan). It doesn’t help that much. I was taking clonezepam (klonopin), but it made me tired ALL THE TIME. Ambien didn’t help me at all — I didn’t ever fall asleep after taking it. Have any of you had success on a particular medication? I fall asleep, but then wake up about 3 or 4 hours later. Thank you!
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Hi MaryAnn,
I mentioned some herbs that helped me (mostly skullcap) and also cal/mag but they aren’t nearly as potent as the pharmaceuticals you are taking. The insomnia does get better as your system calms down but it is really, really tough. I have taken ativan but, like you, I don’t find it helps all that much as it is more an anti-anxiety med. Having said that, my dr said that to use it for sleep to take a higher dosage (1-2 mg). So I guess I’m of no help in terms of meds but just wanted to say the not sleeping was a big issue for me too- then it got to the point where I would sleep okay one night and not the next so it would be one good night, one bad night and now that is better too. Hopefully someone else can chime in on the meds. I have heard of people saying no meds they took really helped- it’s like the botox stuff is so strong, it’s more a matter of our system calming down.
Thank you for your answer. It’s just so frustrating — the “not knowing” from one day to the next. Or one night to the next. But I have to sleep or I get really bad migraines. So my doc wants me to up my dosage, which scares me. I hate taking medications like this. But I also hate not sleeping. My big fear is that I’ll become dependent upon the meds and I won’t know when I can sleep on my own again.
Hi Mary Ann
I was also very worried about taking sleeping tablets…..I have NEVER had to use them before…..but I was so desperate to sleep……I would take Restavit and alternate it with Diazepam……I agree with Susan though – I really think it is time that eventually heals the insomnia. When I started taking the tablets I could sleep til about 3am….then after awhile it was 430am…..and eventually I could sleep til 6am (however still woke up with terrible anxiety)….now though I am back to sleeping really well – but still have a few nights here and there that the insomnia returns – like last night…..I have slept really really well for weeks now and then last night I woke up at 3am…with neck/back pain…..It’s weird I had a bad day yesterday….emotional and also bad pains…also got a mouth ulcer (these were constant for the first 6 months)so it’s another cycle of the toxin…..that’s what I have never been able to understand about this….it seems to improve but then cycles back again….and it feels like it’s always feels slightly different….with me it can be jaw pain or neck pain or my ears feel slightly blocked……it’s bizarre…..I keep thinking though the symptoms I have now are much better than what I used to have…although they are very different I think it’s my ability to keep coping with feeling not well that has become really hard to deal with….as you know it really knocks you both physically and mentally which I think will just take time for the body to bounce back……..please let us know how you are going…..really hoping you are feeling some improvements x
Hi Annette,
Thank you for your note. I am so sorry that you had a bad day. That is so hard about this. One day can be better and then the next day is worse. I don’t understand that either. I wish someone could explain it to us so we’d know what to expect. That would make it easier to cope, I think. The worst thing for me is still the insomnia. But I do hope your mouth ulcer is healing quickly — hopefully more quickly than before. And I hope you had a good day today without pain. I really appreciate your support. And I’m thinking of you, too.
Hi Mary Ann,
I hope you feel better. I was wondering about the Amitriptilyne. Do you get any major side effects from it? I tried Mirtazapine, which is similar and I slepped pretty good on it, but I got a severe inner restlessness from it. Klonapin makes me tired too, but it’s the only solution to my insomnia now. I hope we’ll get over this bad insomnia soon
Hi Jasmine,
Thanks for your note. I do find some relief from amitriptyline. I take 25 mg at night and sleep between three and five hours. Then I take lorezapam and sleep four to five more hours. I KNOW! It is a crazy system. But I need more than three or four hours sleep, which is all either drug seems to give me. I have been taking amitriptyline for several years for migraine prevention, and there was a time after bottom that amitriptyline wasn’t helping me sleep at all. The only drug that I know has helped was the lorazepam. It isn’t perfect. Mirtazapine didn’t give me a minute worth of sleep. So I am not sure how much this will help you. I hope it does. I hope we are all sound sleepers very soon — drug free. My prayers are with all of you.
Hi, Jasmine!
My Doc said that if I take Mirtazapine I am gonna to put on me about 3-4 kg. Can you tell me about you experience?
Hi!
I wonder if someone tried Bensodiazepin Imovane(Mylan) or Zolpidem. I am afraid to try these tablets because of their anticholinergig properties.
Maria…it has been awhile since you asked this question….but for me…Zolpidem worked for my first bout of symptoms. I took 5-10mg/night for about 10 months…and then gradually weaned off of it. For my second bout of symptoms…the 10mg Zolpidem only gave me about 2 hours of sleep. I found that if I broke a 10mg of the tablet into quarters…I would then take 1/4 tablet every 2 hours to get me through the night. It seemed by taking the whole thing..it just gave me deeper sleep (weird dreams too)….but not long sleep. So..I would just take the 1/4 tabs each time I woke up…and so ended up getting 6-8 hours of broken sleep.
What REALLY ended up helping my sleep was when I started with 15mg of Mirtazapine. It is an anti-depressent that was prescribed to me to help with anxiety. I hesitated taking it because I was having bad reactions to drugs…especially at the very onset of my relapse of symptoms. But…into my 3rd month of relapse…I felt that my nerve sensitivities were settling down slightly (and, well, quite honestly, I felt that I needed to try SOMETHING for the anxiety because otherwise I just didn’t think that I was going to make it through)…I started the Mirtazapine. Once on that (I take it one hour before going to bed)…I got much better sleep. I still take 1/4 tablet of the Zolpidem when I go to bed (one hour after taking the Mirtazapine)…and I can usually fall asleep within 30 minutes and get through the night without having to take anything else.
I am also taking .25mg of Klonopin….but take that during the day. It might help with the sleep thing as well…although I am not taking enough of it to have that much of an effect on the insomnia.
Again….sorry for the late response…how by now you sleep issues have gotten better.
Hi, Soloist!
Thank you for the answer. I am at 17 month mark now and doing better. The only problem I really have now is insomnia. I can sleep only two hours and then wake up with nightmares (this has continued for 6 months). I have tried 5 mg Zolpidem and Oxascand 5-10 mg. It has not helped so much. As a result, I can sleep about 7-8 hours of interrupted sleep.
I know that Mirtazapine is a good medicine, but my doctor says that you gain weight on the Mirtazapine. What is your experience?
How are you doing? Any improvment? I really hope that you will improve!!! I wonder if your doctor believes you that it was Botox?
Maria
Hi Maria. Well….one of the side effects of the Mirtazapine is that it increase your appetite…hence the weight gain. When I was put on it…I was still suffering from really bad naseau and had already lost about 20 pounds in 10 weeks. So…it made my appepite a bit better and I have put on about 10 pounds of the 20 that I originally lost. I needed to put on the weight though..I had dropped down to 107 pounds and I am 5’6″. It didn’t make me eat more than I normally would…it just allowed me to eat SOMETHING….as when I was at my worst….I could barely eat anything at all. Since then….I am still getting the naseau now and then…but not like I had it before. I understand the hesitancy about putting on weight….but….for me, just getting nutrition and food into my body…and being able to get a full night’s sleep was more important for me.
Am so glad that you are getting better. If you are only struggling with the insomnia….you are doing great!! I would encourage trying some of the Mirtazapine. It is a typically fairly well-tolerated for most people.
Do you still have nerve pain mine is horrible are you taking anything for it
Hi Everyone….
Maria emailed me with the following questions so will post on this thread…….
Hi!
Topic : Insomnia/Anxiety
I want to ask about insomnia.
I wonder if someone tried Bensodiazepin Imovane(Mylan) or Zolpidem. I am afraid to try these tablets because of their anticholinergig properties.
I wonder also if someone tried Duloxetin (Cymbalta) for anxiety?
Grateful for answers
Maria
I am trying to organise for a pharmacist or Dr who may volunteer their time and give suggestions on possible medications – I know you will all have your own Dr but this would just be ‘suggestions’ that you can talk to your Dr about if they haven’t mentioned it already.
Also I know on other sites that they have professionals who comment on posts – however these professionals sometimes appear biased. If a pharmacist/Dr agrees to comment on here it will only be about treating symptoms and not about their view on Botox.
Will keep you posted.
Hi soloist do you still have nerve pain and is anything helpinq it mine is really bad
and can you tell me what doctors that you found in Texas that can maybe help
Yes I am still having pain. My nerve-related issues are more nerve “sensations”….shooting sensations down the back of my head and neck and into my arms. I get jolts of electrical-type nerve pain during the night in my legs and feet. Other pain that I have is muscular and joint aches….back, legs, knees, head…it moves around my body.
There is a doctor in Texas by the name of Dr Rhea. I don’t remember his first name. He runs an environmental detox program….not necessarily for botox in particular but for all types of environmental toxins. I had called there once….they wrote and said that they thought that they could help me…but you basically have to go there and check in to their treatment center for awhile…and have lots of tests run, etc. At the time….I decided that I just physically couldn’t make the trip nor did I have the $$ to do it. Now….somewhat the same situation…altho since I am attempting to work part time now so that I don’t lose my job….I couldn’t do it anyway. Unless…I just don’t get better and lose my job anyway….then I might reconsider.
That’s exactly what I have pain in my legs arms hands my stomach is me
ssed up when I eat I feel like it bloats up where I cant breath and when its empty its worse.I hate this because I have two kids and its so hard. I want to go doc but I’m broke also but I dont know what else to do its getting worse.every morning at six my head pulses and shakes and then my body will do it until I get up I’m exaused .maybe we can both go and they will give a discount ha probably not but its worth a try.
Hi soloist the name has changed from sick and tired to t folley if your reading the replies and sorry about the spelling I’m using my sons kendle
Well….I don’t think they offer group discounts! Here is the website if you want to look up information. His name is Dr William Rea. http://www.ehcd.com/
Hi soloist, I called but they haven’t returned my phone call yet did they by chance tell you the price range that it would be.
No….our discussions didn’t get that far. I merely stated my issues…I got a letter and packet in the mail that had more detailed information on their program. Note that it isn’t necessarily a detox program for Botox…but rather a program that tests you for various sensitivities to various toxins. They basically but you in a somewhat sterile environment free of all chemical/environmental toxins….and start testing you to see what your body reacts to. I do believe that the toxin in our system makes us sensitive to other things….I have experienced that…so in a way their program could help symptomatically if that is the case. I really don’t remember the costs….there was a room/board cost….then physician fees and then fees for all of the different tests that you would have to get.
I don’t know what to do I’m loosing so much weight and feel so runned down if I keep going like this there will be nothing left have you tried saunas or oxygen therapy and does your body still shake inside I have horrible dreams too even when Im sleeping I feel like I’m still awake.
Tell me again…how far into this are you? I lost weight too….I lost about 20 pounds (down to about 105 pounds at the lowest) with my intial set of symptoms and then again with the relapse. I know that it is so hard to eat when you feel so sick. The only thing that I could get down was Ensure or other protein drinks during my initial set of symptoms. With the relapse…it was even worse because I would react to anything with sugar (except natural sugars)…and unfortunately Ensure has sugar. So…with the relapse…I drank protein and natural fruit drinks made by Odwalla….I don’t remember the name of the other one but you can find them at any grocery store. Get the ones that have the most calories (they usually have about 300-400 calories per bottle). When I couldn’t eat anything…I would try to drink 2-3 of those/day. I could usually eat scrambled eggs/toast….but for about 2 weeks…that was it. You just have to force yourself to eat. The naseau for me lasted for about 4 weeks the first time…and about 4 months the second time….got better with time.
Yes…I still have the shakes inside. The nerve sensations are the worst during the day……the internal shakes are the worst at night….usually first thing in the morning before I am really awake. My head and/or arms start buzzing at they wake me up. And, yes, the dreams can sometimes be bad. I know the feeling of being awake while you would dream. My dreams were so vivid it would feel like people were standing right in front of me talking to me…or singing or whatever was happening in the dream felt like it was happening right next to my bed and I was awake watching it all. It was very strange. When I started taking the Remeron….that got better.
I did not try saunas or oxygen therapy. Others have posted that those helped them…but I personally tried to not stress my body with anything and I think those things might have stressed it too much…but rather just tried to eat healthy and do what I could to support its healing.
I know the symptoms are horrible. They will get better…just take one day at a time.
I’m thirteen months into this and have two kids they see me cry every day I hate this. That’s what makes it so hard is that I cant spend the time with them that they need.I have high thyroid antibodie and my thyroid swells up but the thyroid levels were normal I had a thyroid scan done back in August and it showed I had graves disease which is hyperthyroid. But the thyroid levels showed normal confusing I know the funny thing is when I took the radioactive iodine all this went away for a day I didn’t have stomach problems heart nothing and slept like a baby felt normal but the next day it was all back so many weird things have happened to my body its hard to explain.so what are you taking for sleep ive tried citolopram but it made my head worse and breathing worse everything I take I have a reaction to.I am down to 98 lbs before this I was at 116 and I’m 5 ft 3