hello my name is Jamie been a ch sufferer for 3 years suffer with it quite bad im in no set pattern meaning although i do get short periods of respite usually a month or two i can have an attack at any time of day night and any time of the month i am so relieved i have found this website for the last year i felt truely alone with this as ppl often branded me an attention seeker and doctors branded me as (drug seeking behaviour) for a while i persisted with my G.P to do something but refused stating that he believed i was trying to scam drugs and he doesnt believe me i finally went for a second opinion where i later managed to recieve a doctor open minded enough to believe and through luck i had an attack right there in his surgery and due to the swelling in bloodshot eye they finally took notice lucky for me i have a great team at the royal london hospital (neurology dept) only they cant help me with ways to cope and deal with an attack as my meds only do so much to ease it any and all feedback help or jus saying hi would be greatly appreciated and of course thankyou CH.Com thanx guys and girls hope to talk to you soon X

Hi,

   Can you give us any feed-back on exactly they HAVE done for you?  What meds did the doctors put you on, etc. 

yes of course after the G.P saw the attack he immediately called for an ambulance after an hour in a and e they finally decided to give me morphine and then called for a specialist who said right we are going to refer you to a nuerologist at the royal london after a month of waiting and being in the Ch minefield they constantly did motor function tests as so much time had gone by the severity of the Ch had left me a nervous wreck with what appeared to be an ataxia of the brain (one side of the body weaker than the other the left of course) i was also shaking alot on the left side of my body hand and knee bounce so after the motor function tests they carried out an ecg to check my heart then a Ct scan and MRI all which came back clear and after speaking with the consultant and running through the full list of symptoms he went away and came back with the diagnosis of ch they kept me in to moniter the severity of it once they had seen a couple of bad days and nights they prescribed verapamil 160mg to start then increase and sumatriptan 6mg subcutoneous injections and O2 any further info feel free to ask

Congrats on going the full nine yards, getting all the tests to confirm a CH diagnosis. the good news is, your days of suffering are over....for the most part!

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Take a few minutes and read this link. It shows the correct way to use oxugen. I abort my attacks in about 6-8 minutes just by huffing oxygen. It has totally changed how I view the beast, and all but eliminated my use of the imitrex injections. Those are kept on hand for emergency use only.

Your verapamil dose is REALLY low. Some go as high as 960 mg a day to get relief. That being said, work with your doc as you increase the dosing as this is a high horsepower med, not something you adjust on your own.

Go to the meds section of this board, read the post "123 PAIN FREE DAYS AND I THINK I KNOW WHY." It's a simple, daily,  vitamin/mineral supplement that's providing a suprising degree of relief for many of our members.

Finally, avoid pain killers like the plague!!!!! Absent knocking you out, pain meds are generally worthless in the treatmnet of CH, can cause nasty rebounds, their addictive qualities far outweigh any benefit.

Glad you found us, welcome to the family. :)

Joe

hey joe i wish that was the case my days of suffering ar far from over even with the diagnosis and the treatment i still suffer as i fall into the unusual catagory of regular occurance ch the verapamil was 160 3 times daily to start and i failed to mention the increase was via doctors advice not my own lol i am currently on 240mg 3 times daily and the sumatriptan at 6mg which is a moderate dose i do believe where i and my nuerologist currently new to this diagnosis we are in the test and see stage where we are learning as we go i also frogot to mention as i experience varied levels of a ch attack some are mild and lasting of a few mins to a full on attack lasting 180 mins in which i am totally writhing in agony i have learnt that normal pain relief meds have little or no effect on relieving the pain instead as you say revound effect or in the first case for me co codomol codeine and anti inflamataries such as ibuprophen make it a hell of alot worse thankyou so much for welcoming me to the family i couldnt be any happier to know that i am not alone with this as i wouldnt wish the condition on anyone however would be nice if you could give one to someone purely so they could understand how BAD this can be

and thanx that info on 02 is great i shall utilise it thanx again

Clarkson,

Don't mean to speak for Joe, but what  he and a lot of us who say that,  means with "your days of suffering for the most part are over"...is that so many of us who use pure oxygen with a non-rebreather mask and a regulator that goes up to at LEAST 15 lpm  will abort a headache in less than 10 mins.  I have a regulator that goes to 25lpm  and the difference is amazing.  Some have one that goes even higher.  45 lpm.

The trick to not suffering longer than necessary is to get on it at the very first twinge of a headache and stay on it for at least 5 mins. after the pain is gone. 

Hi Clarkson,

Agreed with the responses so far about the O2 and the vitamin D3 regimen.

6 mg sumatriptan injection is actually more than we usually need as it turns out. It's standard for us to be able to abort an attack with 3 mg, many can with 2 mg.

There's a sumatriptan tip here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE that outlines how to inject smaller doses, which could be worth your while at least for minimizing side effects.

ahhhh of course apologies :) regarding the confusion and ok i understand ill be sure to mention reducing the triptan as im sure you guys know the rush and heat sensations can be quite full on so ill see about three mg with me dox and thanx guys still so new to this all lool but illl get there one thing i wanted to ask you guys how does this affect your day to day life as i find myself extremely tired alot of the time i am very sensitive to lights i find that it seems to be my main trigger which through my own understanding of what i have i believe this to be the reason for why i suffer regular attacks that dont seem to follow any particular pattern the worst period i recal having was 2 to 5 a day everyday for the best part of a year and a half with gaps of about a month every three to four months hence by the end of that i was left a shaking nervous wreck even with this medication it only seems to take the edge off of it the o2 should be better soon as i have pushed for the non rebreather and the optimizing regulator so just waiting for the G.P and Nuerology to decide an ok for it one thing else i would ask for how can i help i believe you guys call it the dance

Clarkson, I'm really glad you found us.  You've received some very good advice already.  May I please ask a big favor though?  A different font and breaking your sentences and making paragraphs would make it a lot easier on old eyes like mine.

One other avenue you need to at least make yourself aware of is found at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; Many have found long term relief there, but it is up to each to decide if it is the right way for them to go.

All the best,
Jerry

[font=Times New Roman][/font]

     hey there
            yes of course i can hope the new font is ok and yes me too i am really happy i have found you guys and girls lots of good things to take on board just i still find myself struggling to find ways to take my mind off of the pain during the onset of attack

     I feel that one of the best things i can do during an attack is to concentrate well try to concentrate on something else however lights seem to be a major trigger for my ch however there is no set pattern.

     does anyone have any suggestions on mind occupying things i could try as i believe i am at the stage of why me as i seem to have attacks almost constantly.

thanx again jerry and everyone else
                  

       Jamie

Thanks, Jamie.  Much easier to read!  I had to break my kids of that too.  I guess it is something younger minds can handle, but us older ones have trouble following it.

If light is  prob for you this might not help, but I like to get on the computer and play a game.  I have one I've about worn out, and have beaten so many times I have to find different ways of making it challenging, but like you I find focusing my attention on something else makes it more bearable.  This works only up to a K7, and ONLY if it get to it before that point.  It gets relly hard to pinpoint something with the cursor when you are dancing in your seat, hence the concentration factor.  It doesn't always help, but it is my comfort place much of the time.

Sometimes if I get to one early on and it isn't going to escalate very high I will try to read.  It has to be something that will grab my attention though, and something with enough going on in it to engage my mind. 

Hope that helps.

Jerry

Hi Jamie,

On occasion (rarely) I have been able to stop a hit by concentrating  intensely on the center of the pain, surrounding it in a bubble...and slowly closing the bubble until the pain is gone. It is an exhausting effort and impossible for me above a 5. It seems pointless now as there are better options..like O2! However, I still try to distract myself much like Jerry describes...it takes the hit down a notch or two....

Many here, including me,  have a mantra of "swear" words repeated over and over during a hit. I won't repeat what I say...and it would sound funny to an uninformed observer...but there has been scientific study indicating it helps with intense pain....

See the article on the attached link....my Mom would not approve...but a son with ch scared her such that she would have "listened the other way"...

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Then there's this.....

When you’re lying awake with a dismal headache, and repose is taboo’d by anxiety, I conceive you may use any language you choose to indulge in without impropriety; Sir William Schwenck Gilbert

Best,

Jon

Sorry to hear that you are suffering so.

Sometimes I do try to concentrate on my breathing - having the 02 really helps with that.  I sometimes use a hot water bottle on my head too  :) the heat of that can be a bit of a distraction...

Also exercise can help some, some not so much.

Wishing you all the very best,

Kate

Here's something that I've posted...it's been awhile... but it worked for me over the years. The price is certainly right in any event:

Dr. Wright’s Circulatory Technique

I am not sure what mechanism is triggered by this but whatever it is, it 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. I thought it worked best with my left arm. Increased circulation to this area 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. It's important to know that this has nothing to do with psychic ability or meditation. It's physical.

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

Charlie

Thanks for posting that Charlie.  I have used that in the past when I was caught off guard and away from home with no aborts.  If anything, it is a distraction and gives you something to concentrate on instead of the pain.

Beth