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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New Guy
        
(Message started by: Melvyn on May 31^st, 2006, 6:35pm)

Title: New Guy
Post by Melvyn on May 31^st, 2006, 6:35pm

Hi,

I'm a new member but not new to the site. Had my first episode back in 2000. The doctor knew it was CH but didn't tell me. Gave me some pills which didn't work and boy did I suffer.

Had my second attack in 2003 and I researched the web and found this site, although I didn't read much about treatment. It was great to know what was wrong with me. I just never have any illnesses and live a very active lifesyle including riding my horse at speed over cross country fences!!

During my second attack visited the doctor who admitted that he knew it was Ch back in 2000. Gave me some pills which didn't work so I just suffered.

Started my third cycle a couple of weeks ago but this time I spent hours reading all the helpful posts from all you guys and girls out there.

Marched into my doctor's office told him I couldn't live through another cycle without help.

Demanded Sumatripan and got it!! Felt pleased until I found that I only got two injections. Also got some Pizotifen which are supposed to prevent the Ch - but don't seem to work.

The Imigran - so far does it for me - down to a 1 or 2 within a couple of minutes.

Got some tablets today 'Zolmitripan' tried them but was 30 minutes into the headache and they didn't do much. Will try them as soon as my next one starts - probably later tonight or tomorrow.

Any way that's it for now - thought it was about time I got on here and put something back into this great site that you've got.

Title: Re: New Guy
Post by E-Double on May 31^st, 2006, 6:51pm

Hiya Melvyn,

I hop eyou find relief soon!!!

Here is the UK's website where you may be able to get some local help.
But don't forget about us!!! ;)

http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm

Best,

Eric

Title: Re: New Guy
Post by unsolved1 on May 31^st, 2006, 6:59pm

Way to go marching into your docs and demanding some pain relief !! Don't suffer needlessly if you can help it at all.

Just a note: make sure you don't mix your Zolmitripan and Sumatripan.

Hope you find some relief !

Goodluck
UNsolved

Title: Re: New Guy
Post by Jasmyn on Jun 1^st, 2006, 3:13am

Welcome Melvyn.

Read the "imitrex tip" on the left, it does help to make your injections last a bit longer and it is still effective.

Good for you for taking charge of this condition and it is a good idea to print some stuff here for your doc, so that he will be able to explore the various treatments available for this condition.

Wishing you a short cycle and the correct assistance from your doc.

Title: Re: New Guy
Post by LeLimey on Jun 1^st, 2006, 6:43am

Hiya Melvin
Nice to meet you!
Pizotifen is about as much use as a chocolate fireguard, it's classed as a preventative, ie its supposed to work on reducing the amount of hits you get not aborting each one.. but it's pretty damn ineffective. I don't know a single person who has tried it who it has helped.
How long do your cycles last on average? I ask as some meds take longer to kick in and so wouldn't necessarily be worth your while.
I'm not surprised your doctor only gave you two injections to start with, they are approx £56 per pack so flippin' expensive if they don't work! Now that you know they DO go and get more. Zomig or zolmitriptan is a nasal spray. Takes a bit longer to kick in but the effects last much longer so it will actually help to prevent further hits too.
Frovatriptan is a tablet, it takes up to two hours to kick in so is worse than useless as an abortive BUT!!... if you get hits at regular times and can aim to take it roughly two hours BEFORE a hit it will give you up to 26 hours of Pain Free time.. worth considering!
Please do be very careful about not exceeding the recommended dose, a friend of mine here in the UK had a stroke a couple of weeks ago from doing that. Also be aware that it's not considered safe practise to mix triptans within a 24 hour period. IE If you have an imi now then its going to be this time tomorrow before you zap a zomig. There are varying schools of thought on that but that's the official guidelines.
My personal favourite abortive is o2. I can abort a hit in 5-7 minutes breathing through a clustermasx. (www.clustermasx.com) although you can also use a standard non rebreather mask. You do need to have it at 15LPM and its bloody brilliant! BTW.. if your doctor is funny about it point out how much cheaper o2 is than imi.. works every time! ;)
Have you seen or do you see a neuro? If not ask for a referral. You should have an MRI just to rle out anything else.
Eric's already given you the website for OUCH UK above. I'm a member there too and it's fantastic, there's a big group of us in touch and it makes such a difference to have people you can chat to, cal or meet up with - come and join us!
If you need any more help or advice or you know any good dirty jokes then we're always here!
Helen

Title: Re: New Guy
Post by Melvyn on Jun 1^st, 2006, 7:06am

Hi again,

thanks for all the tips and positive comments.

Dr didn't give any advice on mixing/not mixing triptans but will follow the helpul advice from you guys.

Note to Helen - the Dr gave me Zolmitriptan in tablet form - guess that's why it didn't seem to do anything - may ask for the spray next time. My cycles have lasted about 3/4 months in the past.

Will try taking the Zolmitriptan now as I'm due for a CH shortly - don't usually get a Ch free day during a cycle so will let you know if it works.

Thanks again - time for tab then off to see the horse.

regards,

Melvyn

Title: Re: New Guy
Post by Melvyn on Jun 6^th, 2006, 1:21pm

Helen,

went back to my Dr today. My prob is that I'm self employed and travel quite a bit. If I need to see a Dr it's a case of seeing who is there.

Had to get an appointment today as i was out of meds. I saw Dr number 3, a very nice Dutch lady. I told her the 'chocolate fireguard' wasn't working as a preventative.

I ha was just on my way down from an attack - she felt my neck and said I was very tense - I bet she would be as well if she was just ending an attack, so she suggested I give up smoking and try acupunture. She said that there was nothing she could prescribe to stop CH. I asked for Verapamil and she said only a neurologist could prescribe that.

After some 'discussion' I'm being referred to a neurologist - I can see why some people just give up!!

But one more step forward

Title: Re: New Guy
Post by Charlotte on Jun 6^th, 2006, 1:52pm

Also, some people on the site have had success with Red Bull energy drink and kudzu. I know you can get kudzu in the mail.

Charlotte

Title: Re: New Guy
Post by LeLimey on Jun 6^th, 2006, 4:46pm

Melvyn its simple, your doctors can help themselves very easily by looking in their BNF under Cluster Headaches. They'll find alot of info WRITTEN BY A NEURO!! Actually THE Neuro for CH in the UK, Prof Goadsby, and it states that the only licensed treatment for CH is sumatriptan INJECTIONS. It also states that O2 is beneficial as is verapamil etc.
Have a look at this part of the OUCH UK website, its aimed specifically at Doctors.

http://gpinfo.ouchuk.org/

You might like to print some off and leave it for them to read or take the url into them to look at for themselves.
Seeing a neuro IS in your best interests but its a delay you don't need and I think it's immoral of them to make you suffer in the meantime.
If you need any help or anything th elight is always on here and there is also the helpline at OUCH UK which is manned by volunteers all of whom are sufferers. Its an answerphone so leave your details and someone will ring you back. The number is (0161) 272 1702
Hang in there, we'll help you get through this!
Helen