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Headache Boy uk

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Matthew ch 11 v 28

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Mersea Island nr Colchester
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hello
Nov 26^th, 2009 at 7:18pm

Hi everyone , my name is Nigel and I'm very new to CH . I started getting attacks about 3 months ago and to start with I just thought they were evil headaches brought on by the hot weather and the hard physical work of my job as a structural carpenter , but then i started getting them after drinking wine and then waking up with them . after one mornings attack my wife said "that's it your going to the doctors " and made me an appointment my doctor told me it was CH and gave me imigran and verapamil 120mg per day . the verapamil made me feel shaky,jumpy,dizzy and numb so he reduced the dose down to 40mg but i still felt the same, so he then referred me to a neurologist who,due to the usual nhs mix ups, i didn't get to see just a member of the neuroscience team who,after apologizing , booked me in for a MRI scan . That's next Friday.
The verapamil is helping I mainly just get the shadows now but that's now 6 times a day and i can usually expect one of those to become a full on attack, thank God for imigran that stuff really dose the biz even if it dose make you feel a bit odd for a while.
any way I just wanted to say hello what a wonderful site this is , and by the way is this what i should expect from verapamil or am i just reacting badly to it ? cos dizzy and jumpy and numb don't go to well with climbing about on roofs !

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davedmk CH.com Newbie Offline I Love CH.com! Posts: 21 devon Gender:	Re: hello Reply #1 - Nov 26^th, 2009 at 7:33pm hi mate ,this site is great you will find loads of really helpful people on here.Thats an ultra quick diagnosis so be happy with your gp for that one ,apparently the average time for a correct diagnosis is around ten years!!! ,it took twelve for me to get mine !! anyway welcome.
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Headache Boy uk CH.com Old Timer Offline Matthew ch 11 v 28 Posts: 373 Mersea Island nr Colchester Gender:	Re: hello Reply #2 - Nov 26^th, 2009 at 7:40pm thanks dude 12 years sounds like absolute hell , much sympathy dude.
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bejeeber

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Re: hello
Reply #3 - Nov 26^th, 2009 at 10:42pm

I don't know about Verapamil side effects, but yeah, that's uncommonly quick to get both a diagnosis,and preventative/abortives that work! You are actually very lucky to get have connected first try with docs who will help - most docs are just bumbling buffoons when it comes to CH.

Are you using the imigran in injection form? If not, and if you find that it starts losing it's effectiveness, check the imitrex link on the left of the page here. It's about injections (the most effective form), how low doses are just as effective as full doses, with less risk of side effects, and how to administer them.

I hate to bring this up, but something you ought to know is that CH often responds differently from one cycle to the next, kind of a moving target.

A preventative that works for one cycle may fall flat on others, so it's crucial to be prepared, to get real educated (here at this site) on what the best other options are, and know what to ask the doc for/about if that happens.

After the Thanksgiving holiday is over here in the states, you may get a forum member or two piping in on this topic, extolling the virtues of O2. I pretty much agree with them.

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« Last Edit: Nov 27^th, 2009 at 4:58pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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LeLimey

Ex Member

Re: hello
Reply #4 - Nov 27^th, 2009 at 4:05am

Hi Nigel!
It's nice to meet you although it's a shame it's 'cos of CH.
I too can't recommend Oxygen enough. You need to use it with a non rebreather mask at 15LPM if you ask your doctor for a prescription. I'm not sure if you get supplied with a regulator in Ireland or not, we do here in England but I know the system is different in Scotland. If not there could be a way around that, let me know.
If you get prescribed it, shout and we'll give you a whole host of tips on how to use it - it's brilliant though. I use it as my first choice every single time and I take a tank with me everywhere I go. There are small tanks which will fit in a holdall so it's not too difficult!
The best advice I can give you is to read and read and read and when you've done that, read more (here)
Ask any questions you want. There is no such thing as a stupid question and always remember, there may be someone else who hasn't posted who wants to know the exact same thing so it will undoubtedly help someone else too!

Your wife is also very welcome to come and post, it's tough for her too. We all think of our own pain and what it does to us but we need to be mindful of how agonising it is for someone else to see us go through this horror and not be able to help. It's a pain that is every bit as bad emotionally as ours is physically.
If ever you see anyone else get hit - you'll know. It hits you bang smack in the face just what our families go through. Seeing someone else get hit is much harder for me than getting hit myself, in part as well because we KNOW the pain.

Anyhow, give her a hug from us and say thank you!

Looking forward to hearing more from you

Helen

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exmed1

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Cornwall, UK
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Re: hello
Reply #5 - Nov 27^th, 2009 at 7:52pm

Hi Nigel,
Good(!) to find another soul that I really believe will find a lot of knowledge, support and general good feelings about fighting this beast on this brilliant site.
I'm pretty new to the forums as well, but have been a CHr for 9 years and Chronic CH for too damn long now as well!
Each of us differs in our reactions to the meds were given. O2 can be a 'lifesaver' and the experts here have great ways of using it - well worth a search.
One thing I've learned over the years is to SPEAK - that is tell your GP / Neuro how you are doing, how the med level helps or not, any side effects etc. This is a battle that you need all the help you can get and communication is an incredibly powerful tool.
The other thing I can't stress enough is that you are not in this alone. We fight one demon, but our families fight guilt at their helplessness towards relieving our pain, they fight to keep the rest of the family 'normal', they may (as in my case) have to take on a lot of the normal day to day activities that we can't do. I've posted some things on the supporters forums, because when you read what our supporters go through, you soon see that they need help as well and my admiration for them is total.
Keep on moving forward, best of luck with meds and we'll all see each other controlling this beast as much as we can.
Andy

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Headache Boy uk

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Matthew ch 11 v 28

Posts: 373
Mersea Island nr Colchester
Gender: male

Re: hello
Reply #6 - Nov 27^th, 2009 at 8:20pm

Thanks for your comments. I am using imigran injections but i think my GP didn't really know what else to do .i did mention o2 to him but he really wanted me to see a neurologist ( I think he was running out of ideas, 10 out of 10 for effort mind you ) but i have not seen one yet . hopefully I will get to see one after my MRI scan on Friday.
I have read the page on extending your imitrex but I don't think I could do that , I get so shaky that i think I'm going to snap the needle of when i use it with the pen thingy (technical term)
oh and sorry for making my location confusing it's due to my lousy spelling I am from Mersea Island nr Colchester Essex ( yes I'm an Essex boy) it takes me nearly as long to go through my posts with the spell checker as it dose to type them.
any way thanks again to both of you for your posts and interest in my life .It's fantastic to have some where to talk about this stuff with people who know what I'm talking about .
This place Rocks

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Headache Boy uk

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Matthew ch 11 v 28

Posts: 373
Mersea Island nr Colchester
Gender: male

Re: hello
Reply #7 - Nov 27^th, 2009 at 8:34pm

Thanks Andy . I know I must be really lucky with my GP he diagnosed my CH the first time I went To see him . It makes me cringe to read about people who go through this for years with out any kind of proper medication , makes me feel a bit guilty being diagnosed strait off , but I thank God for that every day.
wishing you good times and peaceful days Nigel.

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You can't speak a kind word too soon, For you never know how soon it will be too late.

Some people cause happyness wherever they go, others whenever they go

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Headache Boy uk

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Matthew ch 11 v 28

Posts: 373
Mersea Island nr Colchester
Gender: male

Re: hello
Reply #8 - Nov 28^th, 2009 at 11:43am

Hi,this is Emma,Nigels wife.I'm glad he can come here and you all understand how he feels because I know that helps him.
For my part,it feels like i'm just waiting for the next attack to strike.We have two children aged 9 and 5, both of whom are very sensitive children, and it's trying to explain to them that dad doesn't feel too good,he will be okay later and no he's not dying really,whilst pasting on a happy face over my breaking heart from seeing Nigel in so much pain when he has an attack and struggling so much with life the rest of the time.
The verapamil is making him jump so much that trying to sleep next to him is very difficult.It's a good job i don't get sea sick! He finds it very difficult to be in crowds and supermarkets drive him mad and ALWAYS cause shadows to occur.We're concerned about driving too far in case he has an attack and also he is so drained all the time,he doesn't feel like doing anything.
So while Nigel has the pain of the CH,i try to carry the load for both of us,simply because I adore him and want him better.xxx

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LeLimey

Ex Member

Re: hello
Reply #9 - Nov 28^th, 2009 at 11:57am

Hi Emma,
It's lovely to meet you - you need to get your own profile on here as you are MORE than welcome to come and post too!

I know how it feels to be in both of your shoes - I have CH myself but I also have a partner and a child with it so I do the supporting side too. I can tell you straight off that seeing someone else get hit hurts much worse than getting hit myself. I know how hard it is for you and your kids.

I know how it is for kids too. I have other children as well and I've had to explain to them that although it really hurts it's "just a bad headache" - I'll be honest, I play it down alot to them. They know it hurts like heck but it will go away and it won't kill me.

We need to get Nigel some Oxygen I think! I think that is going to do him so much good. I'm here in the UK too, I'm just up in Nottingham but pass through Essex every other week on my way to visit my best friend in Kent so if there is anything I can do to help - I will. That is helping BOTH of you too!

NEITHER of you need to fight this alone anymore. There is a lot of support available for Nigel here but equally as much for you I promise.

We'll all get you through this, both of you!

Helen

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