Hi all,

I'm not really sure if I'm doing this right but hopefully someone will let me know if I have this in the wrong category.  I am 51 year old British male. living in the city of Osnabrueck in Germany, who started suffering mild, daily headaches at the age of 24.  An aspirin seemed to be all it needed to get rid of the mild pain initially.  I then had a break of approximately a year and the headaches returned, but this time they seemed to be more painful. The doctor seemed to think I might need glasses and having found out I was a bit short-sighted I was duly prescribed a pair.
Unfortunately the new glasses didn't seem to help and I therefore started on an increased regimen of aspirin.
As the years passed I tended to have breaks from headaches for up to a year at a time but each time the headaches returned they appeared to increase in pain and the duration of the bouts lasted anywhere up to a year.
I was subsequently diagnosed as a migraine sufferer and prescribed Imigran tablets.  I was glad that I had finally been diagnosed with something after having numerous scans, blood tests, etc etc.
I stayed on Imigran for years as by this time the headaches had progressed to waking me in the middle of the night; they seemed to last from anywhere up to 90 minutes and were totally debillitating.  The one difference I seem to have from most CH sufferers is that once I'm having a headache I couldn't move around at all. I pushed myself up in the bed into a sitting position so my head was resting against the wall and held my arms to my sides, took an Imigran and stayed completely still, only breathing shallowly, knowing that the next 90 minutes were going to be hell.  As the headache wore off I felt so exhausted that I invariably fell asleep in that very same position.
I might add that throughout this time I served in the military from age 16 -50 and at times it was no mean feat convincing others of my suffering.
In 2001 someone advised me to try accupuncture, I still had a residual headache from the night before when I turned up for my appointment but lo and behold after the first session my headache disappeared.  I then had weekly accupuncture sessions over the next 3 months and after that, once per month for a total period of a year.  I remained headache free for 3 years to the day. 
In the spring of 2004 my "migraine" attacks started again, by this time I was stationed elsewhere but feeling that accupuncture had helped before I asked my doctor to schedule some appointments.
This time round the accupuncture seemed to work but was not as successful as back in 2001.  It took about a month of weekly sessions to get rid of the headaches.  The good thing about it was that the headaches again stopped for 3 years.
In 2007, again in the spring, almost to the day, I again began to have headaches.  I requested accupuncture once more but this time it didn't seem to work at all and I ws having 3 - 4 headaches per night and also during the day time.  To make matters worse my doctor stopped prescribing Imigran, telling me that I had taken more in 2 months than he would normally prescribe for a whole year.
It was at this point that I told my doctor that if I couldn;t get reasonable medication then I saw no other way out than to take my own life.  Within hours he had me admitted to hospital and I was seen by a nureosurgeon.  That first night I was given oxygen.  I was told to ring through to the nurse everytime I was woken by a headache, use the oxygen and then ring back to say when the headache had gone away.  I suffered 8 headaches that first night, all lasting between 10 - 15 minutes.
The next morning the neurosurgeon came to my bedside, I was headache free at the time and he sprayed some nitro-glycerine under my tongue.  Within 2 minutes I had a raging headache and then he injected me in the thigh with 6mg of imitrex.  Amazingly, within 3 minutes of the injection my head had cleared completely.  Thus I was diagnosed as a CH suffere after 24 years of headaches and within 24 hours of my stay in a German hospital.  I stayed in hospital for a further 7 days while they started me off on small doses of Verapamil, increasing this daily and also giving me a quantity of Imitrex injectors for me to self-inject.  After about a week of me leaving hospital, with a large quantity of both medications my headaches left me once again.
In early December of last year (a deviation from the spring offensive) I felt the warning signs of another phase of CH about to begin.  I had pre-empted leaving the forces by stocking up on Imitrex and Verapamil for future use.  As I decided to remain in Germany upon my retirement from the forces I knew I could get no treatment from the British NHS and due to this existing CH medical history I could get no medical insurance in Germany.  I found some Imitrex injectors that I'd had left over from my hospital stay but these were due to expire in Dec 2008, I also still had a quantity of Verapamil.  I also had some injectors that I requested in 2009, planning to stock up a bit prior to retirement, these expire in June of this year and so far I have about 6 left.
A friend of mine let me use his medical insurance card and go to a different doctor who is known for writing prescriptions with few questions, alas he would only prescribe me 2 injectors and 100 x 40mg Verapamil.  At the moment I am using 2 per day, one at night and one within an hour of waking up.  I don't want to have to resort to using the injectors that expire Dec 2008 but if push comes to shove, I know I will.
I am really glad I found this site, if only to be able to compare my state of affairs with others, which as far as the medical stats seem to be are almost identical with most of the people here.  I wish you all a pian-free new year.

Hi Ed
I am a new comer to this site, the information and support is great so much stuff and no question too daft.

Off on a tangent....
I lived in Gutersloh for 7 years absolutely loved it, returned to the UK after my hubby broke his neck...rugby!!!

Take care
Sue

Hi,I'm 34 lady living in Ireland. Had these since 2001.
on day 4 now, v fed up, mine normally last a min of a month.
Fed up apologising to everyone for not been able to do anything!
Rl:-(

Guiseppi wrote on Jan 21^st, 2011 at 4:55pm:

Hi Joe,
Thanks for a warm welcome from your good self and others.  I guess I'm still a newbie (not to CH, just to the site) so I'd like to throw a couple of questions and observations out there if I may?

I've had a great time researching the site and I commend all users for it's informative content.  In my case, I found the info on stretching the imitrex very interesting but have the following to ask:

When the vial is stripped out of the applicator that needle looks extremely long; when manually injecting is the needle required to go in all the way to the hilt?  I've noticed when having used the applicator as intended the needle remains visible for about a half of it's complete length.  It's a small point (no pun intended) but I rather worry about doing other damage if I'm pshing the needle in too far.  I also noticed that the user mentioned they were injecting in the arm and wondered if there's any advantages to that as I've always used the thigh as described in the instructions?  I was just curious to know whether using the arm had an advantage of being closer to the pain site or whether it's simply a matter of preference.

I think the use of O2 is out of the question for me from a logistical viewpoint but I am certainly not discounting it and will begin to ask around.

Thanks for the energy drink info.  I woke up with a level 2 at 2am this morning and chugged one of the redbulls which I'd stocked up on.  CH aborted after about 15 minutes. At midday today I was again up to a level 2 and reached for the redbull but unfortunately it had no effect this time and after 20 minutes and a level 8 I resorted to the Imitrex, using the conventional method.  Yep, just read your advice about only using 1 redbill when on Verapamil, duh!!!

I have increased the Verapamil dosage slowly and for 2 days have been on 560mg per day (200 in the morning, 160 late afternoon and 200 just before bedtime).  Bearing in mind I am not being monitored during this self-medication process as I am managing to get my meds somewhat through the back door, I'm wondering whether I should increase the dosage a little further but am not sure as I've heard the Verapamil takes 2 weeks to kick in at it's highest dose and so far there's been no real change to my CH pattern.

I would also be interested to know at what point in the Kipp scale people are resorting to using the Imitrex injections?  Tried to research it here but if it's there I apologise for missing it.  My point is that I try and last as long as possible before injecting in the hope that it might only be a 10-minute CH which is sometimes the case, but, more often than not I find myself getting to the point where I keep giving it another 5 minutes and then another 5 until I'm at the level 8 or 9 stage and am left with no option other than to use it.  I could then kick myself for having allowed myself to go through 30 or 40 minutes pain.  I'm sure most people have been there.

As for Melatonin, no chance of getting it here otc or even in UK where I have family who could send it to me.  I looked up some sellers on ebay, all from the USA, some specify that they don't ship to Germany while others simply say "international shipping" available.  I have taken the chance of ordering some from the latter so it will be interesting to see if it actually gets through but at least they have notified me to say that they've shipped already.

Whew!!!! Hope I haven't bored the pants of anyone and I also fully realise that some of my enquiries are very general indeed, especially when considering that all people seem to react slightly different to the CH issue in terms of medication and how they personally deal with it.  I'm beginning to wonder whether this process of committing my CH probs to a forum and also reading others' experiences is actually turning into being a little cathartic?  Oh well every little helps.

Thanks for listening and for the info given so far, also thanks in advance for any replies.

Ed

Ed Carter wrote on Jan 25^th, 2011 at 11:12am:

         Don't fool around get the o2.  It works wonders.

                   Potter

I'd suggest you copy and paste this last post of yours down in the Medications section. Sadly, few people venture up here to the "getting to know you" section, thus you get few responses. Repost this in meds and you'll have a dozen responses.

Joe [/quote]

Joe,

Thanks very much for a timely response coupled with the advice.  I don't think for one minute that you were "talking down" to me and maybe I should have mentioned that this is the same dose of verapamil I reached when under the doctor's supervision during my last episode 3 and a half years ago.  Rushing off to copy my post in the meds section.  Once again thanks.

Ed

Just remember that Imitrex injects are a sub-Q jab, meaning just under the level of the skin into the fatty tissue underneath.

No more than 1/4 to 1/2 inch of needle needs to be inserted, and the easiest way to inject a partial shot is in the abdomen quite the same as a diabetic would insulin. 

Easy to pinch the skin up with one hand and inject with the other.

Hi everyone. My name is Kelly. I am a 27 year old wife and mother of two beautiful children. I am also an episodic CH sufferer. I tend to get them about every 18 months, and they last for about 6 weeks, having 1 a day to start and progressivley adding more and more through the six weeks.

I am currently 12 days into an episode. My neurologist has me on 480mg of verapamil and 1000mg of depakote daily, and oxygen and relpax at the onset of a headache.

I have just found this site today and really hope to keep up with others that share this pain. It is understandable why these things are called "suicide headaches" because one will do ANYTHING to stop the undescribable pain that CH cause. I look forward to reading the insight of others.

Hello. I am.brand new to.this site and am.currently in first week of a new cycle. I live in Naples florida and would love to unite withanyone who understands what I go thru. I am 42 and started having ch's in 1998. I was diagnosed in 2003 by a neurologist at vanderbilt university in nashville tn. My phone is 239-919-4464. The pic is of me and my parents

SeansWife wrote on Apr 1^st, 2011 at 10:40pm:

You have got to be the worlds best supporter.

           Potter

Hello.  I'm Sam from Kansas City and am 46 years old.  I was diagnosed in '94 with CH and have experienced approx 5 or 6 cycles that last about 1-1.5 months each of two a day attacks.  I have Zomig and exercise as my main abortive (nothing preventative).   Exercise is perhaps a little more reliable to shorten the episode.  I was diagnosed with sleep apnea in 2000.   Had the uvula sergery to combat the apnea but it didn't work so I use a cpap.  Anyone know if there is a link between apnea and ch?  Anyone else use exercise as an effective abortive measure?

Oxygen seems to be preferred way to go if it works for you since the adverse effects are nill.  What I don't understand is why my doc didn't suggest this before writing the zomig perscription.   Does o2 require a perscription (couldn't imagine).  How do you get hold of it? Is it bought over the counter?