adamryan

Hello - I hope it gets better soon, hang in there. I just randomly check back every now and then - and my experience is very limited - but I feel prepared for an upcoming cycle. My dad has had headaches for 10+ years, I started getting them 6 years ago. Neither of us heard of CH until last spring when I was at my worst and desperate to find an answer. Today, my dad and I can finally enjoy a beer and reflect on what we have learned. Verapamil, sumatriptan nasal spray, oxygen - really life savers for us. I also do the D3, my dad takes other stuff. Previously I used Tylenol Severe Sinus (acetaminophen), hot showers, and ice-packs...

Hello - been meaning to post an update. Been keeping busy now that I'm doing better, trying not to take it for granted but you know how easy it is to temporarily forget about clusters when your not in one. Just had my first nuero appointment today, must have got lucky cause he is clued in. Diagnosis based on previous documented history, prescriptions for verpamil and imitrex nasal spray - O2 if I want it. Scheduling an MRI... Last headache I had was on May 7th, been PF since. This neuro appointment I made during my cycle, I figured I would follow through and get some tools for next February/April. Mostly done with the vitimans these days, but I recommend the regiment to anyone who is suffering, I believe it helped me. Thanks for all the help, hope my story helps some people here. -Adam

4/28 Thursday 3 headaches, 1am (Kip 6), 3am (Kip 6) 6am (Kip 5). Then, I had a regular person's headache from 7am to 2pm from not getting enough sleep probably. 4/29 No overnight headaches. Slept through the WHOLE night. Here is what I am currently taking (using Allerplex, a D3 supplement, and a B12 supplement): Vitamin D3..... 10000 UI/Day Vitamin B12... 2000 UI/Day Allerplex: Vitamin A ...... 1575 UI/Day Vitamin C....... 12 mg/Day Calcium......... 60 mg/Day Magnesium... 36 mg/Day Looks like I should increase calcuim/magnesium, add vitamin K-12, and maybe a multi-vitiman for the zinc/boron. Thanks for your help!

I updated my previous post on 4/23 with a daily log. Compared to where I was when I signed up on 4/20, I am much improved. Some is because I have a short cycle, a lot is avoiding alcohol which is still guaranteed to trigger one, and the rest I will attribute to the D3 and multivitamin. I have gone days without Tylenol/Acetametaphine, which my first advice to someone new to this would be to forget about it during your cycle because it is just not effective enough for the damage it does to your stomach/liver/kidneys whatever. It's tough, I am still carrying them in my pockets everywhere, but I have just been desperate for some relief. The next best advice - build a toolbox with lots of alternatives. It helps having options when it gets bad. For me, I have not noticed any effect for the energy drinks to abort, but I'll keep those in the house (probably more effective not during the cycle). I like the portability of the 5H extra strength. Overall for me, stimulation of the nerve with hot and cold is working the best - via showers, ice-packs, hot-packs, and ice-cream (basically inducing brain freeze). Still haven't started the Baclofen, Thanks for your help so far, I'll try to stick around and return the favor.

In New England here. Here is something for you: I seem to get hit with a cycle every spring for 6 years. This year is especially bad, polar vortex or not. My dad has been getting hit with a cycle about every year for 10 years. Currently we are both nearing the end of this cycle, ours started pretty much around 3/20.

Daniel Radcliffe also suffers from cluster headaches, but it seems he doesn't like to talk about it much.

I think though it helps my friends understand to see someone they know/see on TV who suffers from CH.

Terrance is now a New England Patriot, go Pats!

Terrance Knighton... http://espn.go.com/blog/nflnation/post/_/id/187390/cluster-headaches-a-living-hell-for-redskins-terrance-knighton

4/23 Friday Had a redbull-vodka at lunch. Set my stopwatch, like clockworh 1h 15m later, felt the "itch" as we were starting to play basketball. Took a 5h energy immediately, walked home and jumped in the shower. 15 minutes later I'm good again and heading back to the court. Finished playing, and when I returned home around 5:30 I got another 15 minute headache. Had a 30 minute one a few hours later around 7. Went out with friends, didn't drink, was fine the rest of the night. 4/24 Sunday First morning without a headache in a while, and is also last day of Antibiotics. Drank a Harpoon IPA at 3pm. Headache begins 45 minutes later, lasts 20 minutes, pretty intense for a few minutes there. 4/25 Monday Only one headache (no known trigger) at 11:07pm. Lasted 20 minutes, started slow and mild but gradually picked up (KIP 7). 4/26 Tuesday Headache at 3am, 15 minutes, Kip 6. Half a chocolate M truffle at 6:30pm. Going out for a bit. Rest of the night was fine. At least they are shorter. I was dealing with 2h-4h severe attacks at KIP 9/10 just one week ago. 4/27 Wednesday Heachache at 6am, 15 minutes, Kip 6 Heachache at 7am, 15 minutes, Kip 7/

Also got a MM last night around 8pm. Had lots of friends over, went out to the bar (wasn't brave enough to drink) but I had the dose right, had a good buzz like I had a few IPA's. Head felt great, I read another post were someone described it as earthly vibes, I agree. I had a lot of fun with my friends, no anxiety about being away from home. Went to bed at 4am, woke up suddenly at 9:30am and had a feeling a headache was coming, 5 mins later it started - I drank half a 5 hour energy (extra strength), ate icecream, then a hot/cold shower, lasted about 15 minutes. But overall doing well. I think its more than coincidence that the headache frequency is decreasing and intensity dropping. I bet I have one or two more really bad ones coming, but hopefully the D3 helps. I am now taking 10,000 UI/day. May be brave enough for a beer this afternoon, probably not because I'm pretty happy to just be functional for the whole day. The past 2 weeks the headaches have not had a noticeable trigger (besides the time of day), but alcohol has traditionally been the trigger for me. I saw the advice in another post about waiting to be PF for 2 weeks before alcohol, I should listen.

Congrats on the improvements, looking forward to the next update

I'll take your advice to heart and get the rest of the suggested regiment today. I'll let ya'll know how it goes, thanks, feeling very optimistic about it.

Oh and CHFather, I will try the 5 hour energy. I have been drinking Redbull and I find it helpful sometimes, but perhaps the 5h energy is a bit more effective. Definitely easier to carry that around. I must be unique in aborting my headaches with a hot/cold shower. As soon as I feel it coming, I get home and jump in the shower, sooner the better. I start with the shower very hot hitting my left eye and forehead. After a minute, I change the temperature to freezing cold, and keep it there for 15 seconds or so, and then go back to hot. I repeat this until I reach a tolerable threshold for the pain, and then I get out, eat ice-cream, ice my head until the pressure moves to the eat, jaw, and then poof disappears. When very hot water or very cold water is hitting my head and face, I am a bit numbed to the pain. When its really severe, the shower doesn't provide much relief but its all I have right now.

Thanks Gentlemen, I agree about the misdiagnosis, she just doesn't have the experience in this area, always trying to prescribe Imitrex and anti-depressants. I'll continue to push for O2 or just go the welding O2 route. Started D3 yesterday (4,000 UI/day for now) and have not started the Baclofen - I want to see if I improve on the D3, less pharmas the better for me. I still have 3 days of Anti-biotics left, not that I think thats helping. I read on the Vitamin D3 regiment that I should see some decrease in severity and frequency within 2/3 days. So, here is how Day 1 went: Last night, had an short episode at 9pm (aborted with ice-cream, hot/cold shower), and then another severe but short 15 minute episode at 10pm. Again, 6am this morning, a 10-15 minute episode (short and not too severe) aborted with ice-cream on the roof of the mouth. At 9am on my way to work, started to get one and turned around. By the time I got back home it had passed, so I am at work now. I can say these episodes were all less severe on the pain threshold. Where I have had a few 10/10's the past week, these were really like 5/10's.