My CH Story

[Mp5]

Hi all. Been on this site for 4 wks now. Here is my story...I'll try to keep it brief.

 

27 years with CH's. Episodic. 47 years old. Like most, originally thought it was a tumour, or results from many concussions. Many Dr. visits and Neurologist later, was told I have Cluster Headaches, and was given Triptans. Been using these awful things for 15 yrs now...never again!!

 

A month ago, I was directed to this site by a friend, then started emailing John Fletcher with questions. He has been amazing....thanks John.

 

I immediately started the D3 regiment. Two wks later I was finally able to get a Vit D test done (am still waiting on my results...hopefully next week). I am only taking 20,000 IU of VitD per day, along with the other recommended co factors.

After a few days of this last cycle, I thought I noticed a difference in my frequency and severity...but it was short lived (a day with no headaches). I normally get 5-10 CH's per day, and 2-3 in my sleep. They range from a 6-10 in pain, and it's common for my wife to find me writhing on the floor of the bathroom, crying or rocking myself in pain on the couch.

 

During this time (last 4 wks), I've also researched and read other thing people are doing for relief, all the while taking my Vit D3 reg. I've looked into Psilosybin, 5 hr energy drinks, cold showers...and all have worked for me. I have yet to get O2 from my ridiculous family Dr...but am seeing him in 2 weeks for a prescription.

 

Also...I have started taking Melatonin at night about an hour before bed.

 

So here are my results.

 

Totally headache free the last 3 nights and 4 days...not even a shadow.

 

Been doing the Vit D3 every day, and will continue to. Will change my D3 amounts after I get my test results back.

Exactly 8 days ago today, I bought 6 bottles of 5 Hr Energy drinks and have taken 4 of them (one per attack) in the nights when I am awakened from an attack. The CH would last anywhere from 20 -35 mins...and be gone like a flick of a switch after shooting a bottle of this stuff. Way better than before where they would last up to an hr to two. I even experimented with ice cold showers before I tried the energy drink, and that seemed to work the 3 times I tried it. But it was just too much to jump into an ice cold shower and hyperventilate while I was suffering from theses damned headaches....but...they did work each time I tried them!!

 

MM's....took 3 doses over a 3 wk period. Small amts...and have had no side effects. Hard to really tell if they are working for me or not, but cannot say they are hindering or making things worse. Will continue to use if needed.

 

So, right now am pain free...for the least 4 days. Usually, in the past, when I go two days without a CH, that means the cycle is done. I hope the same is happening now. I cannot 100% say what has helped me get to where I am now, but would like to think the Vit D3 is helping, and maybe the MM's too. I hopefully will know more when I get my test results back.

 

It would also be great if I am simply just Melatonin deficient, and taking two of these pills a night solve my problem. I should also note that since I started taking Melatonin 3 nights ago, I have stopped getting attacks...coincidence...? Maybe...maybe not. Time will tell.

 

Just wanted to share my story, and what I've been doing. This site has been a wonderful find and I feel like part of the big CH family. I share in all your suffering and and hopefully in all your pain free futures.

 

Dan

[CHfather]

A great message, Dan.  Sounds to me like you are doing all the right things.  And, yes, John Fletcher is a great, generous, extremely knowledgable guy -- as well as being a fabulous advocate for CH awareness.  I doubt that he'll see your thanks here, unless he's been lurking, but I'm sure you have communicated that to him directly.

 

When you say this >>I have yet to get O2 from my ridiculous family Dr...but am seeing him in 2 weeks for a prescription,<< it sounds like you're confident that he'll give you that prescription. If you're not confident, maybe you'd want to bring some O2-related materials with you, and even show him what a prescription should look like. He's probably never written one for O2.  Let us know if we can help you with anything to make his decision easier, if you feel like you need it.

 

There have been a couple of people here who have found that putting their feet in very hot water will knock back an attack.  That seems more tolerable to me than the ice-cold shower, so maybe something you might try if you need it in the future.

 

Just for my anecdotal record-keeping, do the 5-Hour Energies keep you awake when you take them in the night?

 

I have come over the years to believe there just might be such a thing as a jinx related to discussing PF status, so I'll just wish you the best, thank you very much for posting this positive story and good information,  and leave the rest unsaid.

[Bejeeber]

Thanks for that encouraging story Dan!

 

CHf, I know you asked Dan, not me, about the 5 hr Energies and sleep, but for the record I've been deploying a couple per night lately for wake up hits and soon afterwards I've been doing that same strange and unexpected thing other CH'ers have reported being able to do - going back to sleep. 

 

Dan if cold showers can work for ya, well for future reference, one of the many other ideas would be this simultaneous combo of 3 abort techniques that has worked for me recently:

 

1) 5 hr energy shot

2) ice cube(s) pressed against back roof of mouth on CH side

3) blast car air conditioner on coldest setting, highest fan, put nose right up to the vent and forcefully breathe the super cold air in through the nose, out through the mouth, at a pace on the verge of hyperventilation.

 

Each one of these alone has worked for a CH'er at some point, so I figure why not go for a combo platter?   Taking off in a sprint around the block for an all out blast of vigorous exercise can substitute for the cold air when health and circumstances permit, and there can be a bit of a refreshing novelty to it the first couple times or so. 

[spiny]

Great post and welcome Dan. You have really done your homework well.

 

Just a bit of encouragement here. D3 has helped many go PF all by itself. It seems that episodics benefit the most from it. Melatonin is a great help to many of us as well. I use both methods to great benefit. I use 20-30mg per night depending on cycle status. I too am one of the lucky ones in that dept too. As well as the feet in screaming hot water in for emergencies when the  O2 is not available. And I can down caffeine at night with only positive results. You can look kinda of funny with your feet getting cooked while you slam down that caffeine!!

 

Your post sounds like you have set yourself up for success very well. Keep us posted and question away if needed!! If you have questions regarding busting, the closed boards will give you more feedback on that aspect of treatment - Share Your Busting Stories and Theory and Implementation.

 

Congrats to you and I look forward to following your progress!!

[surgeonasim]

very encouraging Dan.

Hoping you stay PF. Do let us know please. Any good news is GREAT news here.

[Mp5]

Thanks for all the reply guys.

Had a set back this morning after I came home from my first of 6 night shifts (I'm a shift worker). Took my Melatonin and hit the sheets an hr later. An hour after that was awakened with a headache.....sighhhh. Took a 5 hr drink and was back to bed 30 mins later.

CHFather, to answer your question, yes...I do find the energy drinks keep me from a restful sleep after downing one. I will def try the hot water on the feet trick if/when I get another. Frustrating...? Yes. But I'll keep pushing on. I do know that my frequency...severity and length have all decreased by a large amount, so that's very positive for me.

What should I be telling my Dr. about getting an O2 script?

Are people generally staying on the D3 Reg even after they've busted? I'm assuming yes. Of course I really won't know what or where I'm at in terms of levels until I get my results back.

Thanks again for all your ideas and responses. I choose to fight.

Dan

[CHfather]

Dan, sorry you got hit again -- glad you were able to stop it quickly.  Schedule changes seem to rough on CH.  This is pure speculation on my part, but you might consider upping your melatonin a little to help adjust to the schedule change.

Here are three resources regarding O2:

This is the double-blind, placebo-controlled trail that was published in the Journal of the American Medical Association: http://jama.ama-assn.org/content/302/22/2451.full

To get the American Headache Society's guidelines  for treating CH, type this (without the brackets) into Google: goadsby "treatment of cluster headache"  

This is an large-scale anecdotal reporting about the use of oxygen for CH: http://www.clusterheadaches.com/O2/Oxygen-survey-final.pdf

 

Not sure what you might do with these: At the least, copy 1 and 2 and bring them with you; or, send them in advance. If your doctor has a nurse or nurse practitioner, we have found that they can be good advocates.  Even with this completely persuasive information, many doctors will still resist prescribing O2.  If you can tell him how to write the prescription, it might help. It should read something like this: "Oxygen therapy for cluster headache. Up to 25 min of 15L/min with non-rebreather mask."  (In both cases there, the "min" is for "minutes.") He can fax it to an oxygen provider, or give it to you to shop for an O2 provider.  If he won't write it for 15 lpm, but only for something less, just take that -- you can get your own regulator once you have the tanks.  The discussion of how many tanks and what sizes is between you and the oxygen provider.  Hopefully, you'll get that far and you can get back to us about specifics.

 

Yes, you're right about staying on the D3.  If you're in a high-pollen season right now, you could try adding a dose (standard dose) of benadryl twice a day.  That seems to help.  If your D3 level is not quite low, I will be very, very surprised.

 

Keep up the fight.

[Mp5]

Thanks pal.

[spiny]

Are you on a set shift schedule or rotating shift? With a set shift you can help yourself by maintaining that sleep pattern on your off days. Your body adjusts to it and deviation from a 'normal' for you sleep schedule is similar to taking naps. It can set off the hits if you nap.

[Mp5]

I work days and nights, over a 35 day schedule. Plus OT. It's very difficult for me to get into a normal sleep routine.

[spiny]

Ouch! Rotating shifts suck all around. Been there myself.

[Mp5]

Update...

100% pain free for 5 days now.

Got a script from my Dr. yesterday for O2. He also gave me my blood test results from 3 wks ago (I'd only been on the Vit D reg for a few days when I had this blood test done, and was not told that it was going to test for Vit D levels...but I guess it did...lol). My results showed 68 nmol of Vit D.

Today...I got my other Vit D results from my actual $85 (Cnd funds) Vit D test. This test was administered May 9th...11 days ago...and I had been taking 20,000 IU of Vit D and all other co factors, for about one full wk (give or take a few days). My results from this test showed 114 nmol level.

So...Im hoping that the Regiment is working!! Should I continue with the 20,000 per day, then have my next test taken in a month....or go on the 1 to 2 wk mega dose schedule..then get retested?

I basically went from 68 nmols to 114 nmols in 3 wks, taking 20,000 IU per day (took 25,000 a few of those day)...and as I stated, have been completely PF for 5 days....including taking 20-30 mgs of Melatonin before bed...even during my crazy shift work schedule which is completely erratic at best.

Dan

[CHfather]

Because I'm not a scientist, I am going to assume that what you report as "nmol" is the same as the measure I see most often used for D levels, which is ng/mL.   If it is the same, I can quote Batch (the developer and fastidious student/teacher of the D3 regimen) as saying, "A 25(OH)D serum concentration of 70 to 90 ng/mL is sufficient for the 82% who respond to this regimen." For those who don't respond, he has recommended getting up to 100-150 ng/mL.  If your current 114 number is ng/mL, I'm going to say you're fine, and all you want to do is sustain that level.  Having seen one person who overdid it with the D3 with substantial consequences, I'm advising caution.  BUT I say that as a non-expert, only using the expert's (Batch's) opinion as a starting point.  I'd advise you to communicate directly with Batch, who you can reach here: https://clusterbusters.org/forums/user/17422-batch/   To me, he's one of the handful of CH heroes, not only because of developing and advancing the D3 regimen, but also because he is virtually always highly responsive and very helpful to anyone who contacts him.  He will also like having you as another positive data point in his result tabulations.

[Mp5]

Thanks CH. I believe from what I read on the other site, ng/ml is the US measurement...and many other countries use nmol measurment. The optimum nmol levels are around 200-220...the same as 65 -80 ng/ml....but Ill double check.

[CHfather]

Thank you!  Yes, I see from the calculator I just looked at that 70 ng/mL = 175 nmol/l.  So you have a ways to go.  But you have been PF for several days now!  That is wonderful news!!!!  Congratulations for taking control!

[spiny]

Dan, that is terrific news. And I call it really wonderful considering your work schedule!

[mit12]

Mp5

Have you tried heat packs placed on the side of the atack? Anything cold on my head during an attack makes it worse but a medical electric heating blanket set to 165 works for me. I put it on the side of my head on my closed eye and back of my neck and rock away.