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Des UK

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Hello everyone - please help
Jun 18^th, 2008 at 10:56pm

Hi everyone - I'm new to this - Thanks for listening x

It's 03.45 am here in England and i'm just about getting through an attack without any medication - Ive already had my limit for 24 hours - this is the 4th attack within that time. As you know the pain is unbearable - Is it just me or does anyone else wonder if they are actually dying? I would do anything to stop it.

I've been prescribed sumitriptan injections by my GP but can only take 2 in a day. I've read on here about oxygen being effective - i've mentioned this to the doctor before but they seem more inclined to give me the sumitriptan. Can anyone tell me why? Is it cost?

I know it's the million dollar question but does anyone have any other suggestions on getting through an attack without medication other than clutching at your head and pulling at your hair screaming and crying like i've been doing for the past hour?

Finally it's such a relief knowing there are others out there who understand.
I wish you all the very best
Thanks
Des

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mezza

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Re: Hello everyone - please help
Reply #1 - Jun 19^th, 2008 at 12:00am

Sorry you are hurting but you've come to the right place- lots of great information here to help those in need. First read everything you can on this site - also visit the ouch website button on left and there is a link to OUCH UK. We have many members here from the UK who i am sure will be along to help you also and navigate your health system and doctors

Oxygen is very cost effective here in the states. It may be that your doctor has not recognized yet that it is an effective treatment for clusterheadaches. Read the information to the left and print it off for the doctor so that he or she is aware of the benefits. Sometimes we have to educate our doctors since our condition is rare. Often doctors have never met a patient with Clusters before .

Typically sufferers need a good preventative like verapamil, topomax, depakote or lithium for example or a combo of prevent drugs to stop the headaches from coming or at least lessening the intensity. Sometimes doctors prescribe prednisone as a transitional medication until prevents kick in. I see you have experience already with the abortives. Many people have great success with O2 and it sounds like you are aware of that already. Many have taken Frova - another kind of triptan that has a half life of up to 26 hours. I have used that before and taken 1 a day to prevent the headaches even though it is an abortive ( hope that makes sense) Frova takes about 2-4 hours to kick in , so its not like trex where you take it when you feel hit coming on. You take Frova prior to getting a hit.

BUT YOU Can't mix triptans!!! dangerous!

Also- when you are left without anything in your arsenol to fight the beast, many down a redbull (or an energy drink containing taurine) at first sign of hit . Redbull and a couple cups of black coffee has killed many hits for me. So stock up!!. Also , some people take melatonin at night before bed to avoid the night time hits - somewhere between 9-12 mg . Also ice packs pressed against your temples and back of head can sort of numb the area when you are getting hit.

Some have found success with the water x 3 technique- check link at left.

Others will be along to share their hints, tips, links to medication articles, oxygen info etc. So hang in there- you'll get sorted out!

kelly

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« Last Edit: Jun 19^th, 2008 at 12:04am by mezza »

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Batch

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Re: Hello everyone - please help
Reply #2 - Jun 19^th, 2008 at 12:53am

Get in touch with Helen Williams, a.k.a. LeLimey here on CH.com. She's there in the UK and knows the routines on how to get oxygen. Oxygen is less expensive and if used at a flow rate of 15 liters/minute, it can be very effective in aborting your attacks. You can also use it as needed without any real restrictions.

Take care,

V/R, Batch

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maalstroom

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Re: Hello everyone - please help
Reply #3 - Jun 19^th, 2008 at 1:58am

Welcome Des, good you've found the site.

Yes, I too have often wondered in my worst hits how this does not kill you... luckily it never does. Makes you wonder how something so excruciatingly painfull, so hellishly agonizing will not burst your eye, not melt your brain... how come the worst pain I can imagine is ''benign''? Still puzzles me after all those years.

Hang on, it'll pass soon. You're stronger than the Beast.

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...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.

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Guiseppi

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Re: Hello everyone - please help
Reply #4 - Jun 19^th, 2008 at 2:31am

Sounds like you only have half of a prong to what should be a 2 pronged attack on the beast.

1: a good abortive strategy. The sumitriptin injections are okay but believe me, oxygen should be your first line abortive. It's cheap, damned effective, fast, and if you need to use it a bunch of times a day you won't overdose on it. Then you can save those injections for the occasional butt kicker the oxygen can''t whip.

2: a good preventative strategy. A preventative medication is one you take daily while you are on cycle, with the hopes of reducing both the frequency and the intensity of your attacks. I use lithium at 1200 mg a day while I am on cycle. Blocks 80-90% of my attacks, the oxygen and occasional imitrex injection can normally subdue the break thru's. Other popular prevents are verapamil and depakote, some have had to combine the lithium and the verapamil to achieve a good degree of relief.

Chase down lelimey and get her to steer you towards the oxygen, you're hurting way too much and that aint right. Glad you found us, hope we can help you.

Guiseppi

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Melvyn

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Re: Hello everyone - please help
Reply #5 - Jun 19^th, 2008 at 6:46am

Hi Des,

sorry you had to find us but at least you'll find help and support here. Helen - LeLimey -is the acknowledged English expert so - you've had good advice to contact her.

I had serious trouble with my GP in the South West. He gave me the triptans but nothing else. Get a referral to a consultant neuro. I asked for one when my GP refused oxygen and verapamil.

I was lucky the consultant I saw had a friend - another GP - who suffered from CH - and he blasted my GP.

However I found that Melatonin worked for me - have a look at my postings on the medications section of the board under - 'Does Melatonin work?

and read the Todd Rozen article found at

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

I took a copy of this to the neuro.

Keep in touch and let us know how you progress.

regards and PF days

Melvyn

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Melvyn

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icculus

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Re: Hello everyone - please help
Reply #6 - Jun 19^th, 2008 at 9:36am

des, you also have to be careful about too much sumatriptan:
as i recently found out when i reduced my injections from 6mg to 2-3mg, my hits also reduced. its a simple proceedure detailed on the left "imitrex tip"

had a neuro visit yesterday and got a script for vials of trex and needles.

O2 works GREAT!!!! much cheaper and mine is free re-fills

main pts you need to tell them is:
1: 10-15L per min
2: non-rebreather mask
3: dont stap it on

read this site, these people are "HEROES"
good luck, you can beat the beast with the proper tools

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« Last Edit: Jun 19^th, 2008 at 9:38am by icculus »

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Bob Johnson

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Re: Hello everyone - please help
Reply #7 - Jun 19^th, 2008 at 10:50am

Get attached to your local support group:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

============
Suggest you print out and share both of these articles with your doctor. Consider asking for a sample of olanzapine (in the Rozen article) as an effective abortive and less costly than the triptans.

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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(Thanks to "cluster" for link.)

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« Last Edit: Jun 19^th, 2008 at 10:52am by Bob Johnson »

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hurts_so_good

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Re: Hello everyone - please help
Reply #8 - Jun 20^th, 2008 at 6:52pm

Hi Des,

Welcome aboard the good ship Pain!

I've only recently been diagnosed - after four years of agony - so I'm just finding my way around as well. The help and information on this site has been excellent.

As for the 02, I saw my doctor last week and asked that he would make it available if needed. His response was not very positive so, because of the way GP surgeries in this country are now financially-driven, I'm also wondering is it a cost thing.

But that, of course, doesn't mean they can refuse to prescribe it - given the weight of evidence from those doctors who are experts in CH treatment, I'm sure we can force the issue.

Anyway, welcome.

Ian

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Charlie

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Re: Hello everyone - please help
Reply #9 - Jun 23^rd, 2008 at 12:41am

Here's something to try. It has nothing to do with drugs, is harmless, and worked great for me. Good luck!

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. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. 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. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

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.

I used to try to imagine I was pushing blood away from my neck 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

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