[EDIT]
Doing better now. I got a 2.5 hour stretch of sleep the night after this post and another 2 hour stretch the night after that. Looks like its slowing down.

Also got a "priority" appt from my neuro the day after he came back from vacay (today.) I told him about the mushrooms. He convinced me to take the prednisone to help kill the cycle even faster.
[EDIT]


Hi all,

I'm starting to lose it... I don't know what to do anymore...

Backstory: I'm 28 and have been getting episodic CH for 12 years now. The first 9 years it was treated as migraines, this is only my second episode with real weapons to fight back with. I'm really sure now that these meds (which are great, dont get me wrong) are making my cycles much longer, and possibly pushing me higher on the kip scale. This is compared to when I used to tough my headaches one at a time with no meds, or meds that would make it worse.

My weapons:
- Axert (a triptan like Imitrex but the tablets can be cut in half allowing me to abort 4 headaches/day instead of 2)
- Oxygen, regulator goes up to 15l/min. I ditched the crappy mask and stick the tube directly in my mouth. I seal my lips around it when inhalling to ensure 100% O2 intake. There is a waste when I exhale but i dont care.
- Monster energy drinks.
- Freezing cold showers, with water running at the site of pain and all over my body, to the point of shivering violently and lips getting blue etc... Montreal has really cold tap water
- Melatonin (just started trying this)

Where I'm at now: I'm on day 18 of this cycle. I still feel like the beast is at his peak with no signs of slowing. I have about 10 attacks per day now. Of which, 6 are during the 8-10 hours of sleep. (Atempt actually, not really sleeping). In my pre- diagnosis days my cycle would have been almost over now. They used to be only 4 weeks, with only the 2 middle weeks being more severe with 4-6 attacks per day.


My problem: I CAN NOT SLEEP. PERIOD. Haven't slept more than 60 consecutive minutes in 3 days now. Everytime single freaking time I try, the attack starts 45 min in. Not 2 hours... I wish. Nightime attacks are the worst because by the time i wake up I'm already at kip 5-6 which makes it so much harder to abort. I can barely stumble to the bathroom where my axert/oxygen/frigid shower are waiting. I do all 3 at the same time. Monster drink is for daytime.

I am normally a heavy cannabis user but I stopped since day 1 because it's a super trigger. I'm pretty sure its messing with my sleep or melatonin levels or something because I have a hard time sleeping without it in my PF days.

I read about melatonin on this forum. Tried it the past 2 nights. I got 10mg tablets. The pills are half fast acting and half slow release. First night i popped 2 pills, didn't help. Then I popped 4 (and I could feel a very strong acid buring feeling in my stomach.) If anything, my inability to sleep is getting worse.

The bright side: I'm keeping my morale up most of the time. No matter how much the beast kicks my a** I still smile and enjoy the time in between attacks and when he starts again  I say to him "bring it on, b****". I live with my parents, I have insurance and am currently on 100% paid disability. My oxygen provider delivers.

Any Ideas? The water/anti-inflamatory/vitamin D regiments sound great for my next cycle but wont it take too long for this cycle? I need to sleep tonight. Taking 4 energy drinks per day and not sleeping well for 72 hours cant be good.

I'm pretty desperate here, I'm calling all my supplier buddies to get my hands on psylocibin mushrooms which I never tried as a treatment. I'm really worried because if it doesn't work it will be extremely unpleasant (by clusterhead standards) to go through an attack in that state.

I wanna sleep sooo bad.....

Thanks for reading my post and replying, Bob.

Sorry it wasn't clear. I actually updated my post at the same time you were composing your reply, with a little "edit" section on top to to say i think i'm good now ( i know what to do.) I was super tired and felt a bit helpless when I wrote this post to begin with.

Well lets get that info up in case someone wants to help me in the future.

- Yes I was diagnosed with CH. (9 years misdiagnosed --> found info online and on this site about CH --> went to ER to tell them I think I have CH and want them to check --> was referred to DR. Normand Moussette who is a headache neuro --> confirmed yes I have CH )

- Imitrex nasal spray (20 mg), worked all 14 doses i tried. Then I switched back to Axert because I cut the pills in half and can kill 4 attacks per day instead of 2.

- Axert pills (half of a 12.5 mg pill) , I started this just right before being correctly diagnosed. I still take it. Works on 95% of attacks. Takes 15-30 min. I save these for the 4 strongest headaches of the day or if I'm away from home.

- O2, works on 60% of attacks. It has failed me even when I catch the attack in the first minute. It does however always slow the rate at which the pain rises and helps me wait for other meds to kick in. My regulator goes up to 15 LPM and I have a crappy mask so  i just stick the tube in my mouth. My prescription says 8-12 LPM and max 15 LPM. Sometimes when kip goes over 8 i just cant stay put and focus on my breathing, i just give up on the O2 at that point.

- Energy drinks. Didn't get a good chance to test it because I recently started and I usually take other measures at the same time and who knows what worked. Seems to help. Energy drinks + 02 is a good combo.

- Cold water shower. Freeeezing cold. Highly variable results, sometimes it can take a kip 10 and bring it down to 3 as long as my head stays there.  Sometimes it aborts a kip 7 altogether. Sometimes it hurts more. Weird right?

-- Melatonin. Not sure i should even list this. Tried it 2 nights when I couldn't get more than 45-60 min of consecutive sleep. Didn't help at all. Was still getting 6 attacks in one night.

-- Prednisone. I just took my first dose ever 60 min ago. I'm following the doctor's tapered dose schedule. I'm actually getting a kip1 and rising as i"m typing this sooooo.... i'll be back

Well that was weird. Taking the prednisone (20 mg) actually triggered an unstoppable kip 9-10. I started with the monster energy drink that I chugged in 5 seconds, then oxygen. Then oxygen under the cold shower. Eventually I realized it wasn't helping and took an Axert which worked. Thank god.

I lied down exhausted from the above. Fell asleep. Thirty minutes later.. .BAM! Another one, same, kip 10. After I clearly felt my cycle slowing down (for daytime attacks and shadows anyways.) This was not normal, how unstoppable these 2 attacks were; even though I caught them early; this late in my cycle. And how quick the pain would shoot up when I remove the oxygen tube from my mouth to take off my shirt or speak.

It freaked me out a lot. I was this close to flushing those pills. Then logic overcame emotion and I thought about it. Didn't make sense that it triggers headaches. I decided to have faith and take the next dose in the schedule anyways (also 20 mg), and wait for the prednisone to actually build up in my system. That was 4 hours ago and I did not get an attack or a shadow. Phiew!! 

I think it was just a short term effect, or the shock of a new drug entering my system. I figure the prednisone affects our bodies in many ways, we are just looking for that one effect that will quell a cycle. My theory: we only get that effect at least a few hours after the first dose, when eventually it overpowers any trigger effects.

I'll post something if I ever feel like the prednisone is triggering attacks again. I doubt so..... its strange but I sort of feel like it's doing it's job now.

And Hoppy, thanks! Didn't know that. I'll stick with the Melatonin. My doc had no objections. Also, I like your oxygen mask joke in the "funnies" section. I LOLed for real on that one.

F*** the beast!

Cheers,

I forgot too mention. With the melatonin, It's best to take
the regular ones, as the slow release aren't as effective
for stopping those wake up calls, and with the vitamin
D3 regime, It doesn't work for everyone when in a cycle,
myself included, but since my last episode in the Spring
of 2012 I haven't had another episode.

Hoppy

Batch wrote on Jun 5^th, 2015 at 1:30am:


Interesting Batch....I wonder if it is really helping by preventing allergic reaction or if there is some other mechanism to it.  Diphenhydramine is a funny drug with some side effects not usually noted.  One is as an antidepressant (Prozac is a sort of a tweaked out version of Benadryl) another is that it is known to lower inflammatory cytokines, something that the hallucinogens also do. (and something that I would think would be quite helpful for our condition)

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On a personal note, if you end up in the ER and you are on Psilocybin mushrooms don't let the nurse sneak up on you and inject you with a syringe full of Benadryl.  Quite the ride.  Not for the faint of heart.   

-Ricardo

Saladin - Bear in mind that Insomnia is a fairly well-known side effect of Prednisone, and made worse when you take it right before bedtime.  Its one of the prices we pay for the generally positive effects Prednisone has on CH.  It doesn't affect everyone, but it sure did affect me when I took it.

Prednisone was the only thing that ever stopped a cluster for me in its tracks, but man that stuff is dangerous.

I have my doctor give me a standing Verapimil prescription and refills, and the first sign of a shadow I start building it up slow, watching the blood pressure.  Once I get up over 240 mg my clusters will taper.

You are definitely cheating yourself out of oxygen if you aren't using a mask.

But the best for me was Ergotamine, would prevent the clusters and give me a clear head for 4-6 hours, but they don't seem to make it anymore!  Used to come as Cafergot, was like ergot and a red bull in a pill.  If you can find this stuff, it works awesome on the big monsters.  I still have some from days of old as my docter gave me a ton, I save it for the 9+ because it's the only thing that will touch them.

Good luck with your cycle!