Hi everyone
My name is Don
I am 38 years old
I live in Alberta
I used to work in the oilfield industry, Pipeline construction specificaly.

I am still in cycle right now but only around 2 on the "Kip" scale, and have only made it up to 8 so far.

Please bear with my spelling, I havnt slept right in almost 2 weeks. This attack has been different than any other Cluster I have had so far but I will get to this cycle later on in the post.

I first started getting CH when I was around 20. At first I thought it was a severe sinus infection, and so did the DR that I seen at the time, or maybe I should say he agreed with me. Head pain, stuffy nose, mostly one side, and I had a history of sinus problems.

It came, lasted just over a week, about the same time as my perscription. So I didnt think anything of it. I was ok for almost 2 years, then I had the same thing happen again, that sharp pain in the temple, behind the eye.

Again it was treated as a sinus infection, this time though it lasted a little longer and was more painfull. It was the first time my left eye started to water during a cycle. I got stronger antibiotics, stayed in bed and one day started to feel better. I again assumed it was par for the course, that the antbiotics had done their job.

Then when I was 24-25 I had my first full blown 10 CH. I lived 36 KM out of a small town and had no vehicle of my own. I was able to catch rides with the neighbours whenever I needed, and they were good people.

This time It was bad, and had a grip on me like you wouldnt believe, so very quickly. I had shadow pains on day 1, day 2 my head was starting to hurt, so I went into town got some over the counter medicine, and started a regiment for a possible sinus infection.

Well, I was taking Neo-Citrin and had cold syrups to help with nasal colds, and was probably taking more than I should, because the pain was increasing. My left eye was watering and I was getting the occasional twitch under it. I couldnt sleep more than a little while. I would put on a pot of water to boil and try to inhale the steam trying to get it to break up. Nothing seemed to help

It was well over 2 weeks. I hurt. I didnt want to see anyone let alone walk over to the neighbours to go into town. My eye was constantly watering now, the twich was constant, my temper foul. I didnt want people to look at me like I was a freak outa the bush or something.  I figured the infection has to run its course, how long can it last? How long can it stay like this, hurting this bad?

Every other time it would get really bad and then would start to go away then dissapear. I was waiting for that day. That day would have to come tommorow. It has to. I kept telling myself this over and over. 3 weeks had gone by, it cant get worse than this. I was barley eating, only because my girlfriend at the time would make me.

I had some friends who could get me Tylonol 3's. I got a pill bottle full of them and was taking WAY to many. (DO NOT DO THIS> I DO NOT RECCOMEND THIS!! IT IS EXTREMLY STUPID!!!! Never buy Pills. SEE A REAL DOCTOR!!!)  I would only eat becaus my Girlfriend wouldnt give me any pills unless I had something with them.

The pain now had gotten to a new level, Now. over the 4th week of constant pain my enemy took on new tactics. It wanted to turn up the heat. I had a day where I was grinding my teeth so hard I broke a tooth. Then came the day where I started to loose my vision and hearing. Things were blurry and I could understand words properly, either due to sleep deprevation, or other reasons.

I was way past the dance, and would shake any time I tried to pass out in a "Chemical Coma" I couldnt even walk. My GF was WAY passed concerned about my pill consumtion. She had had enough and contacted a nearby friend and neighbour to come over. He seen me and asked if I was ok. he had know me for a while and had never seen my in that much pain. I was pale and a shell. He basicaly told me that he was taking me to the hospital. I couldnt argue. Hell I couldnt even form a coherent sentence.

I went into the nearby Hospital. I hardly remember most of it. I remember the DR giving me living HELL over how many pills I was taking and what I was doing to my liver. I also remember that he was very concerned for me. He had given me 7 stitches that summer, and due to a phobia with syringes I had refused freezing. I took all 7 stitches with out issues or freaking out. Here I am on his table twitching in pain.

We lived in a very small town and there was talk of sending me to a nearby City. They asked me a lot of questions. They came back and told me the were going to try to lower my blood presure with 3 shots given over a few minutes. They gave me the three shots and asked me how I felt, if there was any relief. there was none.

They then gave me a shot to help me sleep. During this time they had tried to figure out what the problem was and when I awoke they had told me that they believed they had found a possibility. The DR told me that he believed that I suffered from Cluster Headaches.

The prescribed me a drug called 'cybellium' or sumthing like that. I was to take 1 pill every night, and gave me something else for the pain, I honestly cant remeber what. It wasnt Tylonol, and because of the amount of them I had taken was concerned about pain control methods. Whatever they were they were strong. I was so very thankful for that.

I was suppossed to come back but moved out of province shortly afterwards, but at least I had a name for what was happening to me, and that it was a headache. So I assumed it being a type of migraine and went on with my life.

I ussualy get a year sometimes 2 between what I now know are 'cycles', and I have started to get used to kinda what to expect. It ussualy get to the point where my eye waters constantly, and is twitching.ussualy my attacks last 3-4 weeks with the first week being a transition from "shadow" pains,

I stay in my room with the lights out away from everyone. People just piss me off. It doesnt matter what they say it just makes me mad. I know its the adrenaline in my blood, and I gota keep my cool, dont wanna get worked up. During the week if I cant get it to break its working its way up to around 8 on the Kip scale.

Week 2 is my introduction to level 10. My hearing isnt working right, and I cant focus properly due to the pain. My balance is off and my legs feel like they dont know who they belong to. I know that I have a long haul coming in now if it gets here. I have tried various things but mostly trying to keep calm and keep my shit together.

I started my cycle about 2 weeks ago. I was at around an 8. I work with alot of different people from across Canada in amature sports, in particular Paintball. I had some contracts I was woking on as well as had some online meetings to do.

I was praying that my headache would break. Not the case. So I told some of the people that I was sorry, I couldn't deal with anything at the time because I suffer from Cluster Headaches. I had someone ask, whats a Cluster headache. I told them they were a realy painful type of migraine and that I had to go. I didnt want to talk on the phone, i didnt even want to talk. I jsut wanted to get some sleep , just 2 hours or so staright would be nice

So the next day I was talking with my Fiance about it. We have been together only 3 years , but she has seen me in a 10 headache before. So as we talked about it, she said , "Well he will probably Google it". So I thought, well I wonder what He would find. So I Googled it myself.

Thats why I even found this site. I found a wiki about what a cluster headache ACTUALY is. I also found a link to this site, I have been talking with my Fiance about it and looking over information with her.

I am now debating what I want to do next. I know I need to look at finding a DR and getting an appointment with a specialist, and start to look into ways to manage this problem.

I never new it was a disease before. There are SO many things I didnt know, like trying O2 therapy. I am going to continue to look through the site and now will start to keep better track on what happens and when, as well as possible triggers.

So I started by saying this one was different. Well this one startd in the spring , the first one ever to do that, I ussualy get them in the fall. same for this Cycle. Its not steadily increasing up to 10 and then lasting and ending. This one is playing "Peek a Boo" with me. I have had it go from 2 in a day to 5, then back down to 2. Then it goes up to 8 for a few days, then almsot breaks. It stays at 1 for the day or in the morning and by evening I am at 3 or 4. Evenings are hard, before bed my sweety rubs my shoulders or my temple to try to get me to relax.

Well thats lots for me for now. I will post updates of my experiences with this CH and my cycles and any treatments I try and their results.

sorry my first attempt to post didnt work so well. I was typing my post when you replied allready. Hi to you, and thanks for checking in on my post

Yes, try O2, and see a headache specialist. You might also internet search "ocular migraine." These, along with some other diseases, can imitate CHs. It's a good thing to be armed with that info before the Dr decides that's what you have. As a rule, O2 and other meds that are effective with any migraine type, are not effective on CHs. This seems also to be true of O2. It works wonders on CHs but seems to do little or nothing for migraines. Blessings, and welcome!

God bless and welcome.  Mostly really good people here - people who know what you're going through and have great ideas to help - or even just lend an ear if needed. 

If I'm understanding correctly, your location and transportation difficulties are problematic in terms of finding specific specialist help, but a good family doc should be able to at least set you on the right path with at least starting to control the pain somewhat.
O2 with a regulator going up to at LEAST 15lpm and a non rebreather mask is definitely 1st priority.  Imitrex (sumatripan) NS or inj would be next.  For prophylaxis, talk to your dr. about verapamil and prednisone.  I would highly suggest printing out some basic info on ch to take with you to your appt - as others here have pointed out, it is such a rare condition that many doctors don't know much about it...

Again, welcome and may you have many pain free days and nights in your future...

I want to thank everyone for their comments and concerns. I also want you to know how much I appreciate your comments and suggestions. I would have never tried a Red Bull or O2 therapy if it wasnt for this site.

The site and its colection of info is such a valuable tool for our loved ones. My fiance had no idea what was going on, just that I was in immense pain, and that nothing would help. She would just rub my shoulders and neck to try to comfort me, and it made her feel like she was trying to make me feel better, even if it didnt offer any relief.

Now we look over posts and info and links together. I hope that everyone realizes how much help you actualy offer people who have questions and concerns.

Yes Lettucehead living out of town has had some difficulties, and the last year I have had more cluster headaches more frequently. I have been in and out of cycle sense last summer, only getting a month or so in between cycles.

I was sure that when Spring came around I would start to feel some relief, not a new cycle....

This has made it almost impossible for me to hold a job lately, and with my CH issues have came and gone, I no longer own a house, I rent a trailer. I no longer own a vehicle either. My cycles of CH have slowly stripped me of any hidden savings.

I used to work in the oilpatch, but try to tell your boss that you cant make a shift because of a "headache'. You soon find yourself not needed.  I know it is illegal to fire someone for a dissability but you will find it is done quite commonly as the person is "laid off", then replaced.

Between that and my missunderstanding of what I was facing, has contributed to my current situation, but that is a matter that I think I can get a resolution to now that I have the proper information.

I lived for over a decade under the impression that what I had was a type of migraine, and that I would have to either
1- ride it out
2- get so doped up on the pain killers that  just mess up my mind and do nothing for the pain that I might as well be a tomato plant, and still hurt.

So I have been riding them out the best I can. Coming from a military household I was brought up with the "be a man' attitude, so hospitals were only for the dying. I just thought I had a bad headaches, not a long term problem.

Now I am better educated, and more aware. Do I need a perscription for O2? Or can I just go to a medical supply store and purchase the products you have recomended?

Glad to meet you but I'm sorry it's because of this horror. From your post there is little question that CH is the problem. I found it great to meet with people that don't need to be educated about what this thing is. If you get a chance, don't miss it.

Here is something that I used many times that worked for me a good portion of the time. It's not a cure but the price is right. Give it a try.

Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. This technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Increased circulation will result in a reddening and warming of the hands. As silly as it sounds, try to think of it as filling your hand with redirected circulation. The important part is that it has to be done without interruption until it works. Do not give up in frustration. It may not work on the first try. Sometimes it can work quicky but it almost always worked after a time. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of this method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I had about a 75% success rate shortening these attacks. My 20 minute hits were often reduced to 10 minutes or less. Once proven that I had a chance to deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This draws some circulation away from the head and sounds good to me. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain.

I hope this technique is helpful and I wish you the best of luck.

Charlie

Skyhawk5 wrote on Jun 17^th, 2010 at 11:32pm:


I've just confirmed this after seeing a consultant who seemed to think that cluster headaches weren't actually too severe, energy drinks like Red Bull were useless for it and oxygen was only for people with lung problems.

I just wanted to thank everyone for their advice and support. I am finaly coming out of cycle, only a 1 or so on the kip scale so I am thinking that it may be coming to an end.

I only had 1 day of level 10 attacks. 4 of them about half an hour apart, that literaly sent me to the floor holding my head and crying like a kid. I felt so bad for my Fiance, she had never seen me having attacks that bad yet.

I tried Mushrooms and they didnt help (this time) but wont give up hope that they may be helpfull in the future being as so many people have had success with them.

I will try to spend time in here helping others and offering support to those who want/need it. I am also going to see what help I can offer others through volunteer work.

Again I want everyone here to realize how much this site helps sufferers AND their loved ones!!! Thank you!!!!

Just an update:

Well I thought that I was coming out of Cycle. As it stands now, I am still getting attacks ranging from 1-6 on the Kipp. I have moved to a larger city in hopes of recieving better medical attention.

They have tried Sumaptrin, Oxygen, and a few other chemicals. The last person I seen at the Hospital was an Intern, and after giving me a cat scan, thought that I might be suffering from a Sinus Infection....     as my sinuses were active on the one side that I was suffering on

I have not been able to work for the last 3 weeks, but I am looking forward to the new year.

I am going to try Mushrooms again, and see if that helps. I have had relativley good success with Melatonin, and have made it a part of my personal rutine. It seems to be helping out. I will also be trying to get a set up at home for High Flow Oxygen, as I realy dint get much benifit from the Hospitals O2, but I dont think it was being used as recomended in the O2 tab here on the website.

If there are any members from Alberta, Canada, that would like to contact me, please leve a note in this topic and I will contact you, and maybe we can look at setting up an Alberta meeting of CH sufferers.