They're Back

[Mark Brown]

Good morning everyone. My name is Mark and I've suffered with CH since my early 20's, I'm now 59. I recall my very first CH, I was driving from LA to Vegas. I had never experience that kind of pain in my young life. It was as though someone had driven a spike into my right eye. Combine that with 115 degrees in the desert that day. From that point on it was downhill. The episodes came daily multiple times with no rime or reason, no triggers that I was aware of and no OTC meds would phase them.

No doctor I saw could diagnose with any degree of accuracy. I was told by doctors it was sinus problems, pinched nerves, stress and anything else they could pull outta their butts. I actually had 2 major sinus surgeries during that time and ate Percocet by the hand full. Nothing worked. I had a doctor about 15 years ago that was somewhat familiar with CH and he suggested a concoction of Ibuprofen, Benadryl and Vicodin. That was somewhat effective, but I never liked the way Vicodin made me feel. I was also told by the same doc that as some patients age and in some cases the episodes get farther apart and the intensity begins to subside. Until now my last CH episode was 4 years ago and 2 years prior to that. The CH episodes now last about 3-6 weeks with the headache duration lasting 15-45 mins. The intensity has also diminished somewhat as well. Odd as it is I've noticed a shift in time of day for my CH. Early on it was almost constant day night didn't matter. Now, my headaches only attack me when I sit down in the evening and begin to relax and, or at night. I know now from experience alcohol is a huge trigger.  I am now 3 weeks into this current episode. I get perhaps 2 hours sleep a night if I'm lucky. I guess it's time to explore alternate ways to get rid of these damn things as nothing conventional seems to work. 

 

Well thanks for letting me tell my story. I just found this site last week by accident and I'm so glad I did.

[CHfather]

Wow, Mark, you have endured a lot.  In the short run, try an energy shot or energy drink at the first sign of an attack.  Some prefer them icy cold.  Most shots (such as 5-Hour Energy) have more of what you're looking for -- caffeine and taurine -- than most drinks (such as Red Bull).  When you get an attack, some people find that putting their feet into water that is as hot as they can stand helps.  You could start taking melatonin at night, starting at 6-9 mg. Not sure how much that will help since your attacks are not nocturnal.  It sure is a b---h that they hit you just as you're relaxing--not uncommon, unfortunately.

 

You would want to start the D3 regimen right away: https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

As soon as you can, you want a preventive medication. Usually that's verapamil (a blood-pressure med). And abortives. That would be injectable sumatriptan (Imitrex) and OXYGEN.   You can read more about oxygen -- no side effects, very effective at aborting -- here: https://clusterbusters.org/oxygen-information/ Since you're, hopefully, just a few weeks from the end of your cycle, a prednisone taper might get you through.  People without oxygen sometimes get some relief from inhaling deeply from a car or home air conditioner, or with their head up to their freezer.

 

Some people have triggers in addition to alcohol.  Foods with MSG in them seem to be high on that list.

 

Glad you found us!  Hope some of this will help you.

[Mark Brown]

I have begun the D3 (10k mg.) treatments after reading about it here. No noticeable difference though. I'm already on BP meds so I don't know about the verapamil. Need to consult my doc on that one. Prednisone being a steroid has it's own inherent issues. The oxygen therapy could be an option and the energy drinks too. I also want to do some research on mushrooms. I do appreciate your response. It's really good to be able to discuss CH with someone who lives them. Most people who have never had one try to tell me that the pain couldn't be that intense. My response is. Ok... I'll grab a

baseball bat and you stand still.

[CHfather]

The D3 sometimes kicks in fast, and often doesn't.  Unless you spend a lot of time every day naked in direct sun, you D levels are probably low. (If you had a blood test recently, your D level is probably included.)  If you kicked it up above 10kIU/day, it probably wouldn't hurt you (to be clear, not a doctor here--just saying).  If it's a high pollen season where you are, you could add some benadryl to the D3 regimen -- two or three standard doses/day.

 

Agree with you about possible issues with steroids.  This is just a relatively short course of steroids, roughly a week, so probably less long-term risk.

 

Sumatriptan injections might be easier for you to get than oxygen.  It really shouldn't be that way, but it seems most doctors are more comfortable prescribing a med they're familiar with than prescribing oxygen, which most of them aren't familiar with.

 

I didn't mention the "busting" approach (shrooms and other psychedelics) because it seems you're probably nearing the end of this cycle.  You can find a lot of information (some of it a little outdated, so be sure to check back if you go that route) in the numbered files in the ClusterBuster Files section here.