chronicclusterheadaches.co.uk

Moorlock · Posted: Thu Aug 06, 2009 8:20 pm Post subject: Hello all.

Hello,
My name is Glen, currently living in the UK. I'd like to say how good it feels to finally find a place where this damn pain will be understood. I've been in the grip of the animal for about 3 years now, one day came out of nowhere and decided my head was a good place to set up residence. I've been back and forth to doctors, opticians and even the dentist who pulled my wisdom tooth as that had to be the cause only to find these people don't have a clue what they're dealing with.
I did get to see a neurologist who sorted me out with Sumatriptan injections and at first all was well, then I ended up taking the two doses a day every day and still getting pains and eventually no matter how hard I try, no matter how bad I want the pain to go I find I just can't press the button on the injector any more, the willingness is there but my thumb just refuses. Which has left me with a problem. If anyone has any good ideas how to get over this I'd love to hear them.
It's got to the point where I can't think straight and end up having so much time off work sitting in the dark rocking back and forth that I'm surprised I still have a job.
I do apologise for ranting like this, I've just been alone with this and when I tell anyone I have a CH they look at me like I should take some asprin and stop complaining, it's just a headache.. So that's me. Hoping you understand.
May all your animals stay away.
Glen.
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It can't rain all the time.

Jill · Posted: Mon Aug 10, 2009 5:27 am Post subject:

Hi Glen and Welcome!

I am sorry that you have to deal with CH but am glad that you found us. You can rant here anytime you want, we understand your pain all too well.

I do not have any suggestions on the imitrex thing - why is that you do not want to push the button? Does it work? Is it that it hurts? Those injector needles hurt - have you read where people divide the doses and use smaller needles?

Okay... so I did have some sort of thoughts.. it is early and my brain is not really turned on yet!

So welcome anyways! And hugs

Jill
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What lies behind us and what lies before us are small matters compared to what lies within us.
-Ralph Waldo Emerson

Em · Posted: Tue Aug 11, 2009 3:51 pm Post subject:

Hey Glen,

Welcome!! Sorry it's been a little quiet round here. Hoping you found some information that might help though. I haven't used imitrex, so can't help with that I'm afraid. Hopefully someone else who can will be along soon though.

Em
x
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'Life is either a daring adventure or nothing' - Helen Keller

Ike · Posted: Thu Aug 13, 2009 8:47 pm Post subject:

Glen,
Sorry it's a late reply ive been on holiday (well kinda) What ill do is email you on the address you signed up with just so its an instan reply then we can talk back on here so if you see this 1st please look at your emails.

Ike
_________________
If you dance with the devil the devil don't change, The devil changes you

Email me, Admin@chronicclusterheadaches.co.uk

Moorlock · Posted: Fri Aug 28, 2009 11:38 pm Post subject: Hello again.

Hi Jill, Em, Ike and all cluster heads,
Been having a bit of a bad time of it the last couple of weeks, I think my head has been seeing just how many different types of pain and different locations it can get me before it decides to have it's big kick off, which has been at least three times a day lately. I just wish it would hit me with a big one and get it over with rather than having a few hours of fun first, shooting pains, throbbing pains and all that's in between.
The biggest thing at present that is really getting me depressed isn't the pain, strange though it may seem, I have a 12 week old daughter now, she's totally adorable and I feel like I've already missed so much of the last 12 weeks pacing about and sitting in the dark rocking and whimpering.
Have been to the neurologist again, he's given me a six week course of steroids to try and see how I get on. Then gave me another appointment in February. Most of the appointment was taken up going through what kind of pain I have and where it is and how does it start and everything I've gone over every time I've been to see them. Do they really have any idea what they're doing or do they get a qualification, hear about this evil condition and think they might be able to make a name for themselves if they can write an interesting paper on it using us as their lab rats. The bit that made me laugh most was when he googled cluster headaches to find the name of the steroid to give me based on a web page he read a few years ago which lightly brushed the subject.
So there you are, I've whinged and whined again. Thank you all for the kind welcome, it is nice to know that we're not alone in this. Thank you for your e-mail Ike, I've now got some meltlet things of rizatriptan, don't know if they help or not same as the verapamil but I take them. If they do anything they take the edge off the pain and no more but it's something. Again thank you and I hope you are all having a pain free time of it.
Glen.
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It can't rain all the time.

Jill · Posted: Sat Aug 29, 2009 6:30 pm Post subject:

Hi there...

First, congratulations on your new daughter!

I am so sorry about the CH and that you have missed on time with your family - CH not only takes its toll on us physically and emotionally on our supporters and family too. I hate that part sometimes more than the pain itself.

So the neurologist gave you steroids and that was it? And you do not see him until February? That is crazy to me! I have not really heard of being on steroids for such long term use.. it is usually a ten day taper to get your through while the preventative kicks in. Did he give you a preventative?

And if the pain is still really bad, can you contact him for an earlier appointment? I think that neuros are a hit or miss kind of thing, I have had more misses than hits though. Some of them know what they are talking about and some of them do not, some of them will admit when they do not know what to do and some have no problem with it. The goal is to find one that knows about headaches, is willing to learn and to work with you. Not easy though.

I am sorry that you are going through this but remember that you can always come here for support or help. Or you can email us.

Here are some hugs and some vibes for you...

Jill
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What lies behind us and what lies before us are small matters compared to what lies within us.
-Ralph Waldo Emerson

Ike · Posted: Sat Aug 29, 2009 8:03 pm Post subject:

Glen congrats on your daughter, I fully understanding ch stealing your time with your kids ive got two 1 is 8 and the other 21months and ive had so much stolen time too. Im guessing your neuro gave you pred ? it's a good steriod if the does is high enough but please PLEASE take it easy on it, It can do more halm then good if over used. Where in the uk are you? any chance you could get to London ? Manjit Matharu is the UK's best neuro for ch and really is a fantastic guy he will see anyone in the UK with ch just need you gp to send you.

Oxygen is very good for most people and unlike all the other stuff we use its harmless and no side effects at all, Well worth a mention.

Id be more than happy to pm you my number so if you ever need a chat whatever time of the day or night,

Keep your chin up

Ike
_________________
If you dance with the devil the devil don't change, The devil changes you

Email me, Admin@chronicclusterheadaches.co.uk

phil h · Posted: Sat Aug 29, 2009 9:25 pm Post subject: Glen

Hello and congratulations on your baby . I'm sorry you're having such a rough go of it . Prednisone can be helpful in a taper to chase the beast off . Long term pred . has too many neg. side effects , as Ike said . I'm a med resistant chronic . Before that was determined , I was put on alot of different drugs . You should have some type of preventative drug : as well as an abortive drug ....... Ike is more familiar with what drugs are used in UK . Verapamil is used as a preventative ... this is usually a first offered type of rx . Then , imitrex , zomig or maxalt are usually offered as an abortive . Oxygen has proven to be a great abortive for many... I use ice packs on my head and a heating pad on my neck . Hot or cold showers , jamming red bulls , amps or some other energy drink . Coffee , coffee , coffee ...... If I can be of any help , just ask . Talking and not isolating are key in staying sane while surviving . Welcome aboard , I will try and be more present ................ You hear that Ike , I'm coming out from under a rock . I've been on facebook alot , but mostly to play mind numbing games ............ I left work and am now totally permanently disabled . I struggled with working for 6 years before I no longer could attempt it .........................Courage , communication and compassion can be found here . Everyone that has replied to you are high level heros and more than mere survivors in my book . I am still learning from all of them ...... SHOWING UP AND SHARING ALWAYS HELPS.....phil h :smt108
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"Suddenly a huge phantom bird sank three talons of its angry claws deeply into my head and face and tried to lift me. No warnings, no preliminary signs. Just wham! A massive, killing pain came over my right eye. " Frank Capra