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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hello all,my name is Shedz.
        
(Message started by: Shedz on Nov 26^th, 2006, 8:49am)

Title: Hello all,my name is Shedz.
Post by Shedz on Nov 26^th, 2006, 8:49am

Well actually its Paul. Ive been getting CH for 8yrs now but was only diagnosed 2yrs ago. My partner found this site last night and i spent a good few hrs reading and crying because at last there is someone to relate to :) Im still not sure that im getting the right treatment,my Doc just prescribes me with co codamol and something called Zolmitriptan,they sometimes work but i usually end up on the kitchen floor in the early hrs howling like a child trying to crush my head between my hands. On a few occasions ive had violent outbursts and ended up smashing things around the house(has anyone else experienced this?) it scares the hell out of me. Ive tried going to different Docs but always come away with the same prescription. Decent healthcare is hard to come by out here on the North Norfolk coast and its getting to that time of year again for me, two mild attacks over the past two nights :-[but at least ive hopefully found some friends...... Peace to you all xxx

Title: Re: Hello all,my name is Shedz.
Post by bothofus on Nov 26^th, 2006, 9:46am

You definitely need some preventatives, like a prednisone taper for starters. Also ask your doc about verapamil. Others will be along to extoll the virtues of oxygen. If ya go that route, listen to them about the setup.
What else have you tried in the past? Zolmitriptan is from the triptan family. Ever tried imitrex? Or is it called imigran where you are?

Hang on, more help will be along.

Carl

Title: Re: Hello all,my name is Shedz.
Post by davyp on Nov 26^th, 2006, 10:03am

Hi Paul,

Welcome, but i am sorry you need to be here.
Lets start off with the meds, the co codomol will do about as much good as taking 2 smarties at the start of an attack as they take too long to get in to the system.
The zolmitriptan i have no idea about but someone more knoledgeable will be along about that 1 (probably Lelimey, from just outside notingham, a resource us brits LOVE btw)
1 of the treatments i will sugest you look into is high flow rate oxygen needs to be 15 ltrs per min with a non-reabreathable mask, you can get it through your GP, they will need to do a home oxygen order form (HOOF) and fax it off to BOC who supply the O2 direct to you.
The only liscenced treatment for CH is imigran injections and this is listed in the doctors presribing bible, the BNF and it also contains the info on O2.

Were you diagnosed by your GP or by a neuro?
You may like to try and get your GP to do you a referal to go and see profesor goadsby or 1 of his team at the institute of neurology in london. He is the top man in the UK for CH and if you can get your GP to mention CH in your referal you will be seen quicker.
Isnt it fantastic to find out you are not alone and there are other people out there who know what you are going through.
Well thats enough for now you will prob get asked a few more questions and i can only say have a good read of the links on the left hand side and get as much info as you can possibly get as it looks like we need to get a few more ways to fight the beast into your arsenal.

PFDAN

Dape
On the Norfolk/cambs border

Title: Re: Hello all,my name is Shedz.
Post by LeLimey on Nov 26^th, 2006, 1:17pm

Hi shedz,

I just said hi to you on the general board and came here to look for you too!

Right, lets get you sorted, I might be a shortarse but your GP will rue the day you found me cos I'm going to cost him MONEY! ;;D

The Zolmitriptan (Zomig) - is it nasal sprays? If not, then that's what you need. The only licenced drug for use in CH is actually sumatriptan or Imigran injections, not pills, not nasal sprays, the prohibitively expensive auto injectors that doctors hope we never hear of (mean baskets) They can try to avoid prescribing them because they cost a bomb, £56 per peck of two, and you can use two per day. Don't be fobbed off though as since its the only treatment listed in the BNF they cannot refuse them to you as it would be unethical. If they try a little call to the local PCT will result in them getting slapped wrists and you getting auto-injectors (like diabetic blood prick size needles, really nothing to worry about! added to which they work in less than ten minutes!)

Having said that Zomig is a good option if used early enough, that will give you up to twelvehours protection from further hits where as Imi only gives up to two.. worth noting.

You also want to ask for Oxygen. If used at 15 litres per minute with a non rebreather mask you can abort a hit in as little as 5-7 minutes - O2 is my first choice always.
Your GP needs to fill in a HOOF (Home Oxygen Order Form) and he needs to write for cluster headaches on it and tick the box for ambulatory O2 so that you get some small cylinders which you can cart about with you (about the size of 1 and a half coke bottles on top of each other!)
Having said that I do use a clustermasx (www.clustermasx.com) and I believe its the 100% seal you get with that that makes the difference for me.

That's enough for starters, I'd like to know how long your cycles last before I tell you about any other meds and I also don't want to overwhelm you.

We WILL get you sorted though I promise!
Helen

Title: Re: Hello all,my name is Shedz.
Post by CynthiaB on Nov 26^th, 2006, 1:39pm

Welcome.

You have found cluster sufferer's heaven. I haven't managed to completely get my CH under control in the short time I've been here, but I have seen a 100% change in attitude. I now have a lot of hope.

Stick around, and vent if you need to. We know this booger can make you frustrated and angry. That has to get out of your system somehow...better here than exploding out of your head!

This is a safe place to speak the truth. The people here have been banging their heads against the walls longer than you and I have, so I doubt there is very much we could say that would shock them. Don't hold this stuff inside and get yourself in a bad way mentally as well.

Transatlantic vibes coming to you...

cynthis

Title: Re: Hello all,my name is Shedz.
Post by Shedz on Nov 26^th, 2006, 1:47pm

Thank you for checking my message Helen ;)Please excuse me for being slow,im not very good with the pc! The Zomig i use is a 5mg orodispersible tablet which ive been told to take as an attack begins but i usually end up chucking several co codamol tablets down my neck half an hr after ive taken the zomig. The attack ends another 45mins after this. When i first started getting CH the attacks happened at random but after a couple of yrs they settled down. my cycles start in November and carry on through into March with xmas and new yr being the worst part of my cycle. For the last 2yrs my GP has tried Beta Blockers on me to prevent the headaches from starting but not with much success(headaches!ha bloody ha!) Paul :)

Title: Re: Hello all,my name is Shedz.
Post by LeLimey on Nov 26^th, 2006, 2:12pm

Paul tell your doctor he can use those sodding tablets as a suppository with my compliments >:(

You might want to refer him to this site and an article written by Professor Goadsby who is the leading neurologist into CH. As a matter of fact he SHOULD be familiar with the name already since PG is the chap who write the BNF info on CH.

The website is http://gpinfo.ouchuk.org/ I know it says "GP info" but read it yourself too.. knowledge can be a devastating weapon in the battle for correct treatment ;;D

I'd just like to draw your attention to PG's words on the subject of triptans.

Quote:

Triptans

Subcutaneous sumatriptan (6mg) is the drug of choice in abortive treatment of a cluster attack. It has a rapid effect and high response rate. In CH, unlike migraine, subcutaneous sumatriptan can be prescribed at a frequency of twice daily, on a long-term basis if necessary, without risk of tachyphylaxis or rebound.

However, in this era of a cost-conscious NHS, some practitioners are reluctant to prescribe this relatively expensive drug. We feel that, given the devastating morbidity associated with this excruciating pain syndrome, it is unethical to withhold treatment for cost reasons.

Pretty strong words there don't you agree?

Are you under a neuro by the way? If not you need a referral NOW to see a headache specialist neuro. I can't stress that highly enough, if he just refer's you to Neurology you'll end up with some geezer specialising in MS and be no better off than you are now.

If there isn't a HA specialist neuro in your area then he has to refer you to one out of area which is where you could be seen by Professor Peter Goadsby at the Institute of Neurology in Queens Square, London. He needs to write for cluster headaches on the referral letter as there are different waiting times for different conditions.

Tomorrow you're going to see your doc to ask for a referral, Zomig nasal sprays or Imigran injections and Oxygen okay?! If you need any more help don't hesitate to ask - we'll do all we can to help you I promise.
Helen

Title: Re: Hello all,my name is Shedz.
Post by RichardN on Nov 26^th, 2006, 2:36pm

Hi Paul and Welcome to Clusterville

Another vote for 02 here. I can't use triptans (arterie blockage & high cholesterol) . . . so 02 is my only abortive . . . can kill the beast in minutes if used early-on in the attack. If it works for you, you can save the Imagran injections for the hits the 02 doesn't reach.

Make sure and read the "water X 3" link on the left. I'm absolutely convinced water therapy has helped me reduce the frequency/intensity of attacks . . . it takes a LOT of water.

Identify your triggers. For me (and about 70% of us), alchohol is a major trigger. A beer or shot of brandy will bring on an attack within 10-15 min. for me (quit altogether when I came here 2/02). Exhaust fumes, certain chemicals . . . . we're all different.

I was a basket-case when I got here . . . these guys gave me a "name-for-the-pain" and the info that helped me get my life back.

Do follow-up on all Helen's advise . . . she's very familiar with the system you have to deal with "across the pond".

Be Safe, PFDANs

Richard

Title: Re: Hello all,my name is Shedz.
Post by roy21302 on Nov 26^th, 2006, 2:51pm

Paul
Look at you PMs I have sent you a message, I only live a little way from you may be able to help with a chat or advise
Cheers Roy :)

Title: Re: Hello all,my name is Shedz.
Post by Charlie on Nov 26^th, 2006, 4:28pm

Welcome aboard Shedz but sorry it's because you are dealing with this horror. You'll find a ton of good ideas and lots of silliness as well.

It's good to meet you and here is a techinque that worked for me:|

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie

Title: Re: Hello all,my name is Shedz.
Post by Charlie on Nov 26^th, 2006, 4:31pm

Hi Shedz. I posted on the getting to know ya board but thought maybe I should post this technique here too:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie