Headaches triggered by sleep

[Trackle]

This is my 7th cluster headache cycle, I have been getting them for 8 years. This is the first cycle I have had while being able to get medical treatment from a doctor - I have been trying to get an oxygen tank for 5 years and this is my first cycle while having one. It works extremely well for me, and so I don't mean to sound ungrateful; it's just been a very long and hard road. My cycle started about 2 months ago and, similar to previous cycles, my headaches are primarily triggered by relaxation - specifically sleep. I am going crazy without any sleep. I keep my oxygen tank beside my bed, but every night I wake up every hour-hour 1/2 with a headache. Sometimes I get fed up with waking every hour and in desperation take a 200mg caffeine pill (something I have found will extend the periods between the headaches for about a 3 hour period - though it's obviously not the best solution to combat sleep headaches). If I fall back to sleep within 15 minutes of taking the pill I can sleep just fine (though restless) for about 3-4 hours before the headaches come back. If I don't fall asleep within the 15 minutes, no matter how exhausted I am I can not stop thinking about 1000 things long enough to fall back asleep. Either way, my chances of sleeping are pretty slim. I work a morning shift job and have 2 younger kids. Not being able to sleep is KILLING me. Does anyone have any suggestions? I also use Sumatriptan nasal spray - but can only use it twice a day separated by 2 hours at the least; I try to use it only as a last resort because I am well aware that using it even this often can be very dangerous (though a risk I am willing to take to get relief). PLEASE - if anyone has any suggestion at all about how I can get some sleep, I would greatly appreciate it.

[JennyL]

Have you tried trazadone at night?

[Trackle]

I tried Trazadone when the headaches first started (before I was actually diagnosed with cluster headaches) because my MD at the time thought that I was just having trouble sleeping and that that was causing them (she obviously did not understand the gravity of the situation lol). In all fairness I had just had a baby 3 weeks before so it wasn't a blind accusation - I was very sleep deprived. It did not prevent the headaches from waking me up - only made me groggy and less alert while trying to deal with them. I have NOT tried taking trazadone while using oxygen.

[CHfather]

Melatonin at bedtime, starting at about 9mg and perhaps working up as needed, helps a lot of people.  Some find that sleeping in a more upright position helps, such as in a recliner or even sitting up at a table with pillows under the head. 

 

Are you staying on the oxygen for some minutes, maybe 5-10 minutes, after you have aborted the attack?  That can help prevent or delay subsequent attacks.

[Trackle]

I do try to use the oxygen for 5-10 minutes after the attack has stopped - but sometimes I fall asleep and I have been really careful about not falling asleep while the oxygen is running - so if I get to where I can't stay awake any longer I will go ahead and shut it off. The Melatonin is a good idea - I already take blood pressure medicine in small doses so I will have to make sure it won't lower my blood pressure (because I don't actually have blood pressure problems - I take it for cystic acne, so it's already making my blood pressure lower than it should be). I will ask my pharmacist.

[CHfather]

Blood pressure meds -- particularly calcium channel blockers such as verapamil -- are also used as CH preventives. 

 

For general prevention, you should be trying the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

Of course, I'm sure you know not to use the strap to hold the mask on your face.  Just hold it, so it falls off it you do fall asleep.

[Trackle]

I NEVER use the strap for the mask - but I for sure don't want to run all of the oxygen out because I fell asleep lol. I take a blood pressure medication called Spironolactone for my cystic acne - it's the only treatment option I have left because they won't allow me to take Accutane because the cluster headaches give me bouts of recurrent major depressive disorder; which is a huge red flag for Accutane. So any more blood pressure meds are not an option because I am already taking too many blood pressure meds for my very normal blood pressure lol. I also already take D3 supplements every day because I have PMLE - Polymorphic light eruption syndrome - which is a fancy way to say UV rays make me break out in a rash. Since you get most of your vitamin D from the sun it leaves me pretty deficient. I started taking D3 when I was pregnant because without vitamin D your body can't absorb calcium and they thought my son was going to be born with Rickets - so I have been taking it since before the attacks ever started. I usually get a pretty fair remission time - about a year or so. But this cycle started only 5 months after my last one ended, so I suppose it has left me less tolerant towards everything in general.

[xxx]

How much vitamin D3 are you taking?  Most CHers who prevent their CH with the anti-inflammatory regimen take 10,000 IU/day vitamin D3 as well as the vitamin D3 cofactors (magnesium, zinc, boron, vitamin A (retinol) and vitamin K2) suggested with this regimen.  You'll also sleep better taking this much vitamin D3.

 

If you're desperate for sleep, abort the first CH of the night with oxygen therapy then take 25 mg of Imitrex...  That should buy you at least 4 to 6 hours of uninterrupted sleep.

 

Take care,

V/R, Batch

[john2000]

I take L-theamine 200mg, Mg-chelated and melatonin 10-20mg 1h before bed.  It reduced my night attacks  greatly.

[sous139]

Melatonin is a great help for me and making sure that I go to bed and wake up at the same time. Has been extremely helpful. My cycle starts at 9:30 pm and I am chugging an energy drink at 9:30 and I take my Melatonin at 10:30 when I go to sleep. Hope you get some relief, I am on a low dose of Verpamil and it really helped my cycle this year with the addition of the D3 regime

[Dane]

I hate to push pills, but low doses of seroquel (25-50 mg) have saved me from a fight with suicide in hour 40 or 50 of a bad attack. The sleep is the remedy. I cannot stress enough that seroquel is NOT a sleep aid, even though that is often the result. It is an anti-psychotic,and as far as I'm concerned, a powerful one.  I left a reply on a newer post with Seroquel in the title. Good luck.