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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> My intro into CH world
        
(Message started by: KIP_11 on Sep 21^st, 2006, 2:55pm)

Title: My intro into CH world
Post by KIP_11 on Sep 21^st, 2006, 2:55pm

[smiley=hammer.gif]

That smiley seems to sum up how I feel at the moment. I have suffered since I was 3 years old but was wrongly diagnosed as a migraine sufferer until I stumbled across some info on the net last year.

I seem to suffer most in Aug/Sept/Oct and have been waiting for this years episode to kick in - it started last night at 2am, then again at 9am and just after 12 noon. Since then, the right side of my head feels 'dull' and I am exhausted - how much sleep will I get tonight ?

I suffer every year and episodes last approx 12-16 weeks before returning the same time the following year. Drinking alcohol triggers CH off during the 12-16 weeks which is a real bummer, but helps me lose weight for a while !

I have yet to find a herbal remedy and am reluctant to take the Imigran spray as this seems useless as the attack hits within 60secs and my Doctor said take it before the 'headache' takes hold - too late buddy !

Cold water shower helps as does drinking a couple of pints of iced water during an attack - basically cool the head down.

I have lost a job in the past as my boss does not understand and my 'better half' suffers due to me disturbing her sleep - does anyone know why we suffer from CH and how come there is no cure ?

Many thanks !

Title: Re: My intro into CH world
Post by Yorky on Sep 21^st, 2006, 3:51pm

welcome ...have you tried o2,have you seen a neuroligist..all i can say my friend is read and learn,good luck,you will find plenty of help here

Title: Re: My intro into CH world
Post by davyp on Sep 21^st, 2006, 3:56pm

Hi Kip_11,

First off i cant tell you why we suffer or why there is no cure But i can tell you that you have found a great place for support and answers.

Have you been given a confirmed diagnosis of ch by a neuro or are you self diagnosed?

If you check out some of the links you can find out about a lot of the meds used to deal with the beast.
One med that i would recomend that you look into is O2 as if it works for you it is a very effective weapon.
You say you are reluctent to use the imi spray is this just due to the fact that it takes a while to get to work or is there another reason.
The only licenced medication for CH is imigran injections and this is listed in the BNF (the doctors prescribing bible) O2 is also listed.

Where abouts are you in the uk? I ask as there are several meet and greets organised by LeLimey (Helen) she is at 1 tonight but i am sure she will respond as soon as she is able to. Helen is a true star and every 1 will tell you that she is the person to talk too.

Sorry about all the questions but if i didnt ask some 1 else would.

Dape

Title: Re: My intro into CH world
Post by Sandy_C on Sep 21^st, 2006, 5:14pm

Hi # 11, and welcome to this crazy family. You've had these since you were 3? How old are you now? DavyP mentioned our CH lady LeLimey (Helen). She suffers from CH, but she also has a 5 year old son who has CH as well. Helen will be your Godsend with information. She will be here and touch base with you.

I have always found the ice packs, ice water (by the gallon) to help, but it doesn't make the hits stop or go away. Read the buttons to the left of your screen about oxygen. Check the medications board about kudzu (natural - can be bought at health food stores and many grocery stores), look in to Melatonin (also natural), if you are getting nighttime hits.

Unfortunately there is no "one" remedy. It's trial and error, hit and miss. We are all different in our attacks, and in treatments that help us.

Keep reading. Ask questions, someone is always here and if we don't know the answer, we might be able to steer you to someone else who might.

Sandy

Title: Re: My intro into CH world
Post by Edski_1 on Sep 21^st, 2006, 7:11pm

on 09/21/06 at 14:55:24, KIP_11 wrote:

[smiley=hammer.gif]

I have suffered since I was 3 years old but was wrongly diagnosed as a migraine sufferer until I stumbled across some info on the net last year.

just out of curiosity - how old are you?

as for poor diagnosis, I'd gather 75% of the folks here have a story about that. :-/

on 09/21/06 at 14:55:24, KIP_11 wrote:

[smiley=hammer.gif]

I have yet to find a herbal remedy and am reluctant to take the Imigran spray as this seems useless as the attack hits within 60secs and my Doctor said take it before the 'headache' takes hold - too late buddy !

Try summatriptan, or some other triptan - whatever they are called over there. DO IT! They are not a cure, but they are wonderful aids to getting through this shit.

on 09/21/06 at 14:55:24, KIP_11 wrote:

[smiley=hammer.gif]

Cold water shower helps as does drinking a couple of pints of iced water during an attack - basically cool the head down.

I find cold is a help. In fact I have tendonitis in my right elbow from pressing an ice pack into my head too much. All those years of playing tennis I never had a problem with that elbow! [smiley=laugh.gif]

on 09/21/06 at 14:55:24, KIP_11 wrote:

[smiley=hammer.gif]

I have lost a job in the past as my boss does not understand and my 'better half' suffers due to me disturbing her sleep - does anyone know why we suffer from CH and how come there is no cure ?

Many thanks !

An unsympathetic spouse doesn't help - that's a part of my misdiagnosis story...I try to go out to another part of the house if I get a night time attack (this cycle probably close to 80%)...most of the time my wife doesn't remeber me getting up or going back to bed - but she'd probably be woken up by the thrashing that goes on at the most extreme part of these buggers.

Unsypathetic job - that might have been part of the story about my last cycle, although my job was just "eliminated"... it sucked, but I got through it. I now have a better job, with far more management potential.

As for cure - consider that the disgnosis is still problematic for highly trained professionals. It's pretty tough to treat a condition that is hard to pin down on any particular physical mechanisms...

The best advice I can give is to 1) find a neuro specialising in head aches, 2) try the Imigram (try the nasal spray if you don't want to try injections), and 3) try your best to cope.

Good luck! :)

Title: Re: My intro into CH world
Post by KIP_11 on Sep 22^nd, 2006, 8:36am

Thank you all for your responses.

FYI my name is Mark and I am in Cornwall.

I had a KIP 7 at 2.30am last night which lasted an hour so not too bad, I managed to get some good sleep after that.

My GP diagnosed CH after I took some info printed from the web last year and prescribed the Imigran Spray.

I am 40, and my 'Heads' started when I was 3 (so my dear old mum says) so have suffered for 37 years - although I don't recall any before the age of 9.

Obviously, I have coped for years without knowing exactly what was 'wrong' with me but have decided that I really have to do something about this. I am no longer prepared to de debilitated for 3 months a year so any advice is welcomed - the problem is, there is so much conflicting advice on various 'treatments', knowing where to start is a problem.

I am not a fan of prescribed drugs and would ideally like a herbal remedy, these seem few and far between in the UK though. I have heard for Solaray but cannot find a stockist here.

Once again thanks for your comments.

Title: Re: My intro into CH world
Post by LeLimey on Sep 22^nd, 2006, 9:07am

Hi Mark,
Its nice to meet you but I'm sorry it has to be here.
I was in Bridgewater at a meet and greet on Monday, its a shame I didn't get to know about you before that but I'm more than happy to either call you or give you my numbers to call me any time you like.
Herbal remedies - have you heard of Kudzu? Check out the threads on here. You might like to read about melatonin too. Both are available to order from www.vitacost.com I've ordered from them before and they are very reliable.
You may also like to look up Rivea Corymbosa (RC) seeds and Psilocybin or magic mushrooms. Have a look at www.clusterbusters.com
Have you ever tried Oxygen? I swear by it.. wouldn't be without it.
Lets help you get sorted ok?!
Helen

Title: Re: My intro into CH world
Post by KIP_11 on Sep 22^nd, 2006, 9:39am

Hi Helen.

I have looked up Kudzu but that seems to be something to do with Alcohol recovey and Melatonin is a sleep aid - have I missed something here ?

Can you please tell me exactly what herbal stuff (not magic mushrooms ?) you have bought that works for you and where I can order it + where do I get O2 for personal use ?

Kind regards.

Mark

Title: Re: My intro into CH world
Post by KIP_11 on Sep 25^th, 2006, 6:39am

Just a quick update of my weekend.

Friday night - 2.00am, the usual KIP 6/7 kept me up for an hour or so.

Saturday evening, went to see a comedy hypnotist (not CH related) and seriously thought about not having a drink. However, I thought what the hell and went for it - the pain I was expecting didn't happen, so I had another and another. The hypnotist was good and he performed mind control on the audience (inc me).

That night, I DID NOT HAVE AN EPISODE.

Sunday, I was on KIP 3 all day but again at night, I managed to sleep straight through.

As I type this on monday morning, I feel fine !

I seriously thought I was in for a bad weekend but god must be smiling on me (although he gave me the wrong lotto numbers again).

I hope you all were as lucky as me.

I still need info on where to get O2 for personal use in the UK - any ideas ?

Cheers.

Mark.

Title: Re: My intro into CH world
Post by LeLimey on Sep 25^th, 2006, 11:42am

Hi Mark
You need to get your doctor to complete a "hoof" (Home Oxygen Order Form). Once that it done he needs to send it to the suppliers in your area which will be BOC from Oct 1st. It's currently Air Products but I know from liasing with them about other clusterheads that they aren't allowed to take on any new patients at the moment, they have to go directly to BOC (I'm telling you all this so you don't get sent around the houses!)
You need it at 15 LPM and you need ambulatory as well as home oxygen. You DON'T want condensers either!
Helen

Title: Re: My intro into CH world
Post by chopmyheadoff on Sep 28^th, 2006, 4:20am

mate - bit those sprays and get an imigran injection kit.

it kills the headache straight away, for me anyway

peace

Title: Re: My intro into CH world
Post by chewy on Oct 1^st, 2006, 8:48am

Problem:
Quote:

Imigran spray as this seems useless as the attack hits within 60secs

Solution: Imitrex injections

Title: Re: My intro into CH world
Post by nani on Oct 1^st, 2006, 10:48am

Hi Mark, welcome.
Kudzu is used for alcohol recovery, but it also helps some of us very much. It's used as a migraine med in Chinese medicine.
Melatonin is a sleep aid, but for many of us, REM sleep is a trggier. It also helps many of us a great deal.
Keep reading, and get in touch with Helen. She's a true cluster angel.
pain free wishes, nani

Title: Re: My intro into CH world
Post by unsolved1 on Oct 2^nd, 2006, 11:06pm

I agree with these ppl. Imitrex injections have and still are saving my life !! :) I wouldn't be here today without them :o

on 09/28/06 at 04:20:56, chopmyheadoff wrote:

mate - bit those sprays and get an imigran injection kit.

it kills the headache straight away, for me anyway

peace

on 10/01/06 at 08:48:03, chewy wrote:

Problem:

Solution: Imitrex injections

PF Wishes

UNsolved