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Insomnia...

Does anybody else with Crohn's or UC suffer from long bouts of insomnia (as in days or weeks at a time)? If so, how do you treat it?



I feel like I've tried everything - melatonin, doxylamine succinate, valerian root, chamomile, Lunesta, Belsomra, and Ambien just to name a few. The only one that really worked was Ambien; however, I refuse to take it ever again. My wife caught me sleepwalking three times with Ambien. The third and final time, I had the keys to my truck in my hand and was about to go out the front door. After that, I threw the pills in the trash.


I've had two sleep studies done. The first one was in-patient. I couldn't go to sleep, so nothing was learned from it. The second one was done at home. Other than them telling me I have moderate sleep apnea and that I never hit a deep level of sleep, I didn't learn much from it either.



I asked my doctor if Humira can exacerbate an existing sleep disorder and she said she's never heard of it happening before. The insomnia was at its worst when I was taking Entocort. It wasn't uncommon for me to be awake anywhere from 3 or 4 days at a time for the four months I was on it.


Looking for any experiences or advice anyone may have.
 
Does anybody else with Crohn's or UC suffer from long bouts of insomnia (as in days or weeks at a time)? If so, how do you treat it?



I feel like I've tried everything - melatonin, doxylamine succinate, valerian root, chamomile, Lunesta, Belsomra, and Ambien just to name a few. The only one that really worked was Ambien; however, I refuse to take it ever again. My wife caught me sleepwalking three times with Ambien. The third and final time, I had the keys to my truck in my hand and was about to go out the front door. After that, I threw the pills in the trash.


I've had two sleep studies done. The first one was in-patient. I couldn't go to sleep, so nothing was learned from it. The second one was done at home. Other than them telling me I have moderate sleep apnea and that I never hit a deep level of sleep, I didn't learn much from it either.



I asked my doctor if Humira can exacerbate an existing sleep disorder and she said she's never heard of it happening before. The insomnia was at its worst when I was taking Entocort. It wasn't uncommon for me to be awake anywhere from 3 or 4 days at a time for the four months I was on it.


Looking for any experiences or advice anyone may have.
Though I am still undergoing testing, I've tested positive for the ASCA-IgG antibodies so I may have Crohn's. I'm waiting for the formal diagnosis. Regardless, I have suffered with insomnia for MANY years. I've tried SO many things - melatonin, Trazodone, Atarax, Ativan, Ambien, etc. I, too, had problems with Ambien as did my mom. We both had sleepwalking issues, too!

If you have not tried it, I'd recommend Atarax (hydroxyzine) as it is not habit forming and doesn't leave you groggy. I started at 25mg but found that 100mg worked best for me because it lasted the longest. Depending on your body, you may need to work with your doctor to find your best dosage. It's really cheap, too, and is an old medication.

Hope you find something that works for you.
 
Thanks for the recommendation. I'll be sure to ask my doctor about atarax the next time I go in.


I've known a lot of people who have had issues with Ambien. It's a dangerous drug. To the point that it should only be used in extreme cases.
 
Thanks for the recommendation. I'll be sure to ask my doctor about atarax the next time I go in.


I've known a lot of people who have had issues with Ambien. It's a dangerous drug. To the point that it should only be used in extreme cases.
I agree! It is very powerful! I remember when my mom took it, we found her clawing the walls while standing on her bed and knocked a very heavy picture off the wall over her bed. Thankfully, she wasn't hurt, but it was scary!

I hope the Atarax works for you! :)
 
Insomnia is a common side effect of humira. I have arthritis as well so the struggle for sleep is real as my body just can’t get comfy enough. I end up having to surround my entire body with pillows. Knees prop up. Pillows under my arms. The pain makes it unbearable at times. My doctor prescribed me an antidepressant/pain medication which I take before bed. I’m on a higher dose now which I definitely see helps. Unfortunately though sometimes it just doesn’t help. I find that 2 days before my next dose of humira is often when the insomnia is at its worst.
 
In Canada cannabis was legalized recently and I have found medical cannabis to be effective. CBD has given me some relief to my chronic insomnia which has been so bad at times that I can hardly function during the day. With CBD I take it when I have sleep problems at night.
 

cmack

Moderator
Staff member
I also use cannabis to sleep, the other alternative that was offered to me is amitriptyline (low dosage and off label) Give me a shout if you think I can be of any help.
 
Unfortunately, CBD oil or any other cannabis products are not an option for me. As long as it remains illegal according to US federal law, I will not be able to use it, as my job does routine testing and has a zero tolerance policy.



I personally believe the main reason it remains illegal is because big pharma cannot patent it and there are too many officials getting a piece of the action from the black market they've created.



It's no different than any other herbal remedy that has been known for centuries. People can misuse anything. Look at all of the people out there misusing pain killers....
 

cmack

Moderator
Staff member
Hi Mountaineer01,

You could possibly ask the doc about the low dose amitriptyline. I'm pretty sure it isn't too hard to get a script for that one. It sure helped me get to sleep...Big time!

Best Wishes,

-C
 
I think the 2018 farm bill legalized hemp oil, which is CBD oil. I know it can be mailed legally through the US postal service—which is not the case with cannabis with THC. But your job could still have a zero tolerance policy regardless. It’s frustrating because cannabis is very helpful for insomnia (at least the type that cases difficulty in falling asleep).

I agree completely that big pharma stands in the way of federal legalization. I live in Massachusetts so we have legal recreational and medical marijuana. My former GI recommended it for my crohn’s and it also helps with my chronic migraines.

I second the amitriptyline suggestion. It’s one of the tricyclic antidepressants and it really helps you sleep.
 
I went back to see my family doctor about this, as it was getting to be the worst it's ever been. I was put on doxepin and told to continue the melatonin. I was on doxepin before, but this time it's a higher dosage. Apparently this stuff is supposed to help you stay asleep.



We'll see what happens. I have my reasons to be skeptical.
 
It seems I need to become more aware of these types of forums. I have had Chron's for 47 years and been on Humira for 11 years. Humira is a life saver for me, I had two small bowel resections, one in 1988 and one in 2008. Tried most of the Chron's meds over the years and started the Humira a month or two after my last surgery as the symptoms started back up. Well, it's taken me 11 years to tie the insomnia to the Humira. Thanks to this forum, I just realized the first and sometimes second night after my bi-monthly dose, I get insomnia. I will try taking it in the morning next time, as someone above recommended, and see if that helps before turning to more drugs. Thank you!
 

cmack

Moderator
Staff member
Welcome jtbaron,


Good to see that you have found some info that might help. We're all a good bunch here and we like to help others, even if only for moral support. I invite you to come here as often as you like. You can message me any time as well, I will get back to you.

Kind Regards,

Chris





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