Not sleeping well...

[DoesMyEyeLookSmall]

Hi new here. First post. I deal with my CH on the regular in the evening but I been having struggles staying asleep at night. Constantly waking up 3-4 times a night for no reason. No CH through the night, no dreams just waking up. Doctor prescribed Amitriptyline but other than that didn't give me any answers. I'm now napping in the afternoon for about an hour but my doctor says to avoid that. Anyone else have the same struggles.

[kat_92]

Have you tried Benadryl or melatonin? Do you normally struggle with Ch at night? Chronic or episodic? I take Benadryl every night for allergies and it helps me sleep. 

[DoesMyEyeLookSmall]

I'm yet to try Benadryl or melatonin and my CH or chronic and always in the evening. Never had one before 3pm or after 6pm. I'll look into melatonin since I do use Flonase for allergies. Thanks.

[Bejeeber]

Highly amusing and approved forum name @DoesMyEyeLookSmall! 

Constantly waking up 3-4 times a night for no reason? I've been experiencing the same thing for a little while - here lemme figure out for a minute how long it's been.......OK, got it: 42 years.  Roughly coinciding (or maybe exactly coinciding, I dunno) with the onset of my episodic CH. My deal may be more accurately described as waking 4-5 times a night, and pretty much always in the middle of dreams, so there's a difference there.

Annoying, and certainly not a good thing, but hasn't killed me yet.

There was a short time when a supplement named "Relax'n Sleep" that contained the usual suspects such as magnesium, valerian, etc., seemed to help a bit, same for just plain magnesium citrate, but then no. I'm not one who is helped by the melatonin or benadryl that the helpful @kat_92 mentioned, but some certainly are, so I figure worth a try.

I personally wouldn't be trying taking a drug like amitriptyline for it, but I try to avoid regular use of the pharmaceuticals in general.

I believe CH'ers are pretty notorious for tendencies to not be the greatest sleepers, whether in cycle or not.

[Bejeeber]

I would also say from I've read and experienced, an hour is too long for a nap - more like 15 minutes is supposed to be better for you. Of course naps are practically guaranteed triggers for many CH'ers when in cycle, so are a total no go just on that account, but it sounds like you can get away with them.

[jon019]

.....Hi DMELS....welcome...

....we got us a wonky hypothalamus, which also controls sleep, so abnormalities there not unexpected. mine the opposite, and uncontrolled when young could/would easily sleep 20 hrs straight. might wanna consult a sleep specialist for your issue and/or sleep apnea, which seems prevalent in clusterville. many have been helped with cpap machines (much less intrusive models now available)...

....not surprised re the Amytriptyline...many yrs ago prescibed that for CH, for which it proved worthless, but, i note that the side effect was a deep sleep and getting up in the morning was like climbing out of quicksand with lead weights on (amused me i considered it an accomplishment to just get out of bed)..

....Benadryl is an old line antihistamine which tends to make folks sleepy...which is what we are looking for, Flonase does not..hope it works for your allergies which can make CH worse...

....ps  i like the handle too....and my eye DOES look small...seems permanent but eye docs just shrug...

best

jonathan

Edited December 9, 2021 by jon019

[BoscoPiko]

1 hour ago, Bejeeber said:

I believe CH'ers are pretty notorious for tendencies to not be the greatest sleepers, whether in cycle or not

I think your rt. I never had a problem sleeping and don't (knock on wood get night CH) but I have noticed that I wake several times in the dark hours. I don't understand it but it is real. I have found that the Melatonin gummy and pills don't work for me (just recently tried) but Melatonin sleep soak by Dr. Teal's prior to bed helps. I also wear sleep buds with the sound of rain or a storm that really seems to help.

[BoscoPiko]

Also I should note that I have changed my normal habits of random sleep time to a more strict sleep time even if I'm not as tired. Don't know if that makes a difference but I know I wake up with less shadow pain and just feel better overall. 

[DoesMyEyeLookSmall]

Thank you guys so much. Very informative. I'm so glad I found this site. I been dealing with these monsters for almost 15 years now and felt like I was in the dark and almost felt ashamed to look for help/answers outside of my Dr. Thank you.

[xBoss]

I can't get a good nights sleep without a joint before bedtime. It's been that way for many years like bejeeber, I think it's been about 37 years for me. The weed works for me but yeah, another medicine...

[Bejeeber]

On that weed related note, lately I've found that puffing some CBD bud (Elektra strain, no THC) before bed seems to help sleep longer before the first of the several wake ups.

@xBoss, interested in whether there is a particular strain you find most effective or just weed in general?

I'm pretty sure most weed strains would leave me just lying there all paranoid for a while if I were try smoking before bed. 

[CHfather]

2 hours ago, DoesMyEyeLookSmall said:

I been dealing with these monsters for almost 15 years now and felt like I was in the dark and almost felt ashamed to look for help/answers outside of my Dr.

All the usual questions seem to be in order.  Do you have oxygen?  Have you started the D3 regimen?  Do you know about busting?  What are you using to prevent, and what to abort?  Do you know what your triggers are (if you have any)?  Have you tried any of the new meds (Emgality, Aimovig...)?  . . .  Those kinds of things.  For a big overview that might have some helpful stuff in it, I will refer you here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  There's a section on busting at the end of that file, so if you get tired of reading, be sure to look at that.

[xBoss]

16 minutes ago, Bejeeber said:

On that weed related note, lately I've found that puffing some CBD bud (Elektra strain, no THC) before bed seems to help sleep longer before the first of the several wake ups.

@xBoss, interested in whether there is a particular strain you find most effective or just weed in general?

I'm pretty sure most weed strains would leave me just lying there all paranoid for a while if I were try smoking before bed. 

Indica seems to be the downer more pain killing and knock you out type. Sativa used to give me stay up all night energy but not since I was about 45. The last five years any weed will knock me out. As for strains, I never really pay attention lol. Michigan has been a weed free for all for a while now and from an old dudes perspective it's all cush :p

It really helps with the restless legs and the restless hips (same feeling in the hips). Those can be horrible but weed is 100% working on those issues as well.

[Juss]

Hydroxyzine coma does it for me. The circadian rhythms are hijacked in CH, hypothalamic issues which were already discussed. Because Hydroxyzine isn't addicting I haven't meant a prescriber that hasn't laughed or agreed that hydroxyzine coma isn't fitting or a perfect idea. It doesn't help if you use it every day. The Elavil that you are prescribed has a strong antihistamine profile. It is a tricyclic from the 1950s.

[Juss]

If you can have it covered, consult a neuro specializing in sleep studies. I find it useless unless you snore the roof off. Avoid the hypnotic Ambien and for Christ's sake Halicon. For that matter, all benzos and barbiturates. I remember coming close to driving while asleep on Ambien, we had to lock the keys at night. And, Halicon is considerably worse, it is illegal about everywhere but the U.S. and so I don't incriminate myself I won't go there.