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TedM

Greetings from South Texas

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I will never forget August 2nd 1997.  It was about 5:30 PM and my wife, of six months, and I were getting ready to attend the wedding of a good friend, when I started feeling a strange pulsating sensation on my right temple.  I continued to get ready, assuming it would go away but I ended up in the ER about an hour later.  I was scared. I had never felt what I felt that day.  I think everyone here has heard the stories. 

Every year after that I have had the attacks every Augusts for about 2 weeks with the exception of last year.  I was cluster free for 2013!  I was ecstatic, till 3 weeks ago.

I am going on 18 days with 2 attacks per day, one at 3:00 AM and another at noon.

I am 42 and I don't drink and I don't smoke.  I don't think that I stress easy and I am not overworked.  I own a small business and I feel my family and I live a relatively good life.  When I first saw a doctor, he was clueless, but he prescribed the imitrex injections.  I have been on imitrex since the beginning.  The problem is the doctor can prescribe only a certain amount at a time. I quickly learned to take the medication and make two doses out of one.  My doctor thought that type of medication could be harmful, so he prescribed Zomig nasal this year.  As you all may know, its $300 for 6 doses.  The nasal sprays are effective, only if I snort one on the onset.  The problem is at night.  By the time the pain wakes me up, its too late for any medication to work.

Although I do not wish this condition on anyone, sometimes I feel like my doctor should have a CH for just 10 minutes so he can have an idea of what we go through.

I have not had any side effects with the injections.  How dangerous are they?  I have been prescribed 6MG injections, but 3MG will thwart the attack.

As far as the Zomig nasal sprays, they work and I don't have any side effects to that either, just the bad taste of the medicine in the back of my throat, so why do they recommend you don't take more than 2 5mg within 24 hours?  Is that drug dangerous?

I am afraid that my two week per year cycle of attacks is getting longer. 

I have learned so much here, especially about the O2.

After a full blown attack, I have a headache as if my head is sore from the pain.  Any suggestions to relieve the pain of an aftereffect headache?

Can anyone suggest home remedies or ways to deal with the pain when no medication or O2 is available?  I read a post here of some stretching exercises, such as yoga or neck stretching, that actually worked a couple times.

I am so happy that I found you guys.

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Welcome aboard TedM. Clusterbusters and people on this message board saved my life.

I will let others guide you further but I just need to address the triptan factor (Imitrex, Zomig, many brand names). For me, continuous use of them was the main reason (with steroids + others) for my cycles getting longer and in the end turning from episodic to chronic. They are dangerous, when doctors started to use them for cluster headaches at first they were only allowed to give them on practise in case of severe side effects. In cluster headaches triptans have the power (for some patients) to extend our pain cycles, bring additional attacks and intensify attacks already happening. The biggest danger being turning to chronic. I had a huge improvement when deciding not to use them ever again and many others are telling the same story. Oxygen must work at least as well (it may take some experimenting and practising and developing your gear) as triptans for us to be able to replace triptans with O2. It is scary that triptans are so common prescription for us considering how they are able to evolve our condition into worse.

When I got rid of them I went straight to busting and got 3 years of pain free life (from chronic state). Triptan molecule is binded in our serotonin receptors for around 5 days so you need to not to use them for 5 days or preferably longer when using these actually efficient treatments.

Nowadays I use Vitamin D regimen and Herbal protocol and busting when needed and my CH is completely in control. Will add the links below. It is entirely possible to get better, without prescription drugs. Wishing you all the best.

Vitamin D (anti-inflammatory regimen)

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404

Liquorice Root (Herbal protocol)

https://sites.google.com/site/hortoninneuralgia/resurssit/englanti/liquorice-root-protocol

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Melatonin may help you for those nights. I think the needed dosages are rather high, 9-24mg per day, I'm sure others know better. Melatonin does not help everyone though, I'm thinking it might be the ones who have decreased own production via hypothalamus who receive most benefits.

Couple of doctors/researchers who I think higher of than the rest say that absolute maximum in triptan use for cluster headaches is 2 doses per week for them not to affect the condition. We all know that does not do it for us when we are in cycle and we use them daily.

Herbal protocol covers some issues concerning those aftereffect headache symptoms you mentioned.

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Wow!  If I had only found you guys sooner. . . .  I really hope the imitrex I have been taking hasn't harmed me too bad.  Thank you so much for responding so quickly.  I read up on the vitamin D regime and I have elected to try it.  I was able to find an o2 tank and regulator for purchase, but my doctor's assistant says the doctor cannot prescribe oxygen until I see another doctor. (if only he knew what I am going though)  I called the welding company where I purchase oxygen for work and they told me that they cannot fill an o2 tank for medicinal purposes without a prescription.  Would the oxygen from the cutting torch be harmful?

Again, thank you so much for this information.

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I think when we are using something that affects our receptors (imitrex), overuse in long term can be quite harmful but our bodies & brain also has almost miraculous ability of healing over time. People who choose different alternative treatments routes and because of them are required to detox from triptans report a change after the 5 days, but 5 weeks or 5 months can make yet another difference.

I think majority of people on this board are from US (I'm from Finland) so I'm sure someone will help you with Oxygen questions in no time.

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Oxygen from a cutting torch, more popularly known as welding O2 is quite safe.  I've been using it for over 10 yrs with no ill effects.  There are many, many clusterheads using welding O2 because they don't have insurance and can't afford medical O2.

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Hi Ted, glad to see you've been well advised.  :)

I was cluster free for 2013!

I am afraid that my two week per year cycle of attacks is getting longer.  

OK so your cycles are lengthening and so are your remissions. That is actually a fairly common pattern that can develop over the decades - many here (including myself) have reported the same phenomenon.

If I were you I would consider busting in order to prevent future cycles altogether, plus for the remainder of this cycle go for that aforementioned high flow 100% welding O2 as a replacement abortive for the imitrex. Not that I'm as down as some are on imitrex when needed in a pinch for relatively short cycles such as yours. I too get zero side effects from imitrex, but that's certainly not the case with everyone. I personally feel it's unlikely your imitrex usage has caused you permanent harm or serious danger.

For those "too late" wake up hits, one strategy is to have a forceful "I WILL wake up at the onset of any attack!" talk with yourself before bed, have a solid plan to bolt out of bed immediately upon awakening and hit the ground running, then have your most powerful abortive - a 3 mg injection - set up and ready to go for immediate use.

  Can anyone suggest home remedies or ways to deal with the pain when no medication or O2 is available? 

Yes. :) Cold air therapy as an abortive can work for headbangers with your sort of profile. You have to catch it at onset though. RUN to the car, turn the car on and BLAST the air conditioner, put your nose right up to the super cold air coming out of the vent and breathe deeply, hyperventilate even. An abort can potentially be had in 10 min. or so.  8-)

For some exercise is a trigger (and actually so is cold air, dangit). For the rest of us though, it can be an abortive. I'm talking a blast of super vigorous sprint 'til you drop exercise (if this type of exertion isn''t a health threat for the particular individual).

Texas huh? Have you seen the internationally airing National Geographic segment about cluster busting featuring our Texan forum member Dan? here it is:

https://www.youtube.com/watch?v=qFuL7pcShDk

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Thank you for your suggestions.  I am all for busting, but I have no clue as to where to begin.  I am still reading through the forums and I am learning every minute.  Thank you for the link to the documentary.  I have been looking for it since yesterday.  I just returned from my son's freshman football game.  They won, but I had an attack in the middle of the game, so I went to sit and cry in agony in my truck for an hour.  I was able to return to see the last 2 minutes of the game.  All your help has given me so much hope, thanks again.

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Hi TedM!

My addition here is to add an energy drink - caffeine + taurine. Energy shots can be downed in one or two swallows. Many keep one or two with them all the time for hits like you experienced at the game. You can also get a small O2 tank for keeping in your car. Chug the energy shot and hit the O2. Personally, I keep coffee with me, since I can't down the energy drinks.

With the nocturnal hits, I hit the caffeine on my way to the O2 at home.

Also, avoiding lying down is a big one for many. In cycle, I use a recliner to get some zzz's. I found this one out by accident and when I mentioned it, several members chimed in that they do the same.

As for the post hit headache, I try aspirin. And I do not bend over for any reason!!! Pick something up off the floor and feel the pain ratchet up. That is my reaction.

Hope this helps a bit while you sort out the rest.

All the best,

spiny

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Hi Ted, welcome.

See you have gotten good advise so far...

Welding oxygen is the same as medical, just don't tell the supplier you are going to use it for medical purposes.. you are a welder right?

Also, get the ClusterO2 Kit (mask) here...

http://www.clusterheadaches.com/khxc/

This mask makes a big difference. You can use your welding regulator... just adjust it so the reservoir bag on the mask fills fully with oxygen while you are exhaling. Regardless of mask choice, the idea is to breath 100% O2, and some have even rigged up a garbage bag to work.

I have the same problem waking up fully engulfed in pain... try the oxygen, it works to abort my wake up attacks in 10 minutes... as fast as trex.

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Hey Ted! I am a fellow Texan as well.  Sorry you have to be here, but happy to meet you.  There is SO much great advice on this site, and even better than the advice is the incredible wonderful people who are on it.  They have saved the lives of many, including mine. Its overwhelming at first but the more you read the more you will become familiar with everything, the terminology, the different methods of beating the beast down.  Please be careful with the Imitrex. I know its hard to suffer through an attack when you have the shot RIGHT THERE.  But Tony is right, they make the attacks worse and episodes last longer. And before you know it you will be taking 5x as much as you are supposed to be taking, thats when the OTHER side effects start.  Just getting off the Trex diminished my attacks from K9-10 x 5-8 per day, to K4-7, 3-5 per day.  Its Ok for emergencies,  cause sometimes you just gotta have a minute of respite.  Please let us know if you have questions or anything k? HUGS and PFW (Pain Free Wishes)

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Howdy Ted!

Texas here as well! Sorry you have to be here, but damned glad to meet ya! There are some really smart people here with some incredible advice! Definitely give 'em a listen.

I back the energy drink at the onset of a hit idea. I've been doing it for years now. Been doing the welder's O2 here for 5 years. Slam an ICE COLD energy drink and hit the O2 can kill a K-7 in minutes...at 40LPM though. Have a good'n.

~Eric

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Man, Texas is like the CH Capital of the World

lol...but Texas is still so big...we prolly still live 12 hours from each other.  But that being said...if anyone ever needs anything please feel free to PM me.  I will be more than happy to do what I can to help.  HUGS!  and PFD !

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Funny, I never see the show Jeopardy, but this evening it was on, the subject was "continents", and the question was something like "what continent has a population smaller than that of the state of Texas?"

Answer: Australia

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