Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> hello.....i'm new here
        
(Message started by: clare on Oct 17^th, 2004, 7:38am)

Title: hello.....i'm new here
Post by clare on Oct 17^th, 2004, 7:38am

hi everyone, or fellow ch sufferes should i say. i just want to say how happy i am that i found this site. i came across it yesterday after i had areally bad attack, and its really good to no that there are othere people out there going through exactly the same as you!!!!!
i've been a ch suffer for about 5 years now ( diagnosed for 3 years) and i'm in the middle of my cycle now. 2-3 a day, everyday. lasting anything from 1 hour - 5 hours. i take imigram injections ( god send) but my doc will only give me 2 a week. i'm trying to get more. so i've been reading about the oxygen and it sounds really good. can anyone tell me more about this, is it dangerous in any way at all.............

Title: Re: hello.....i'm new here
Post by yikes_another_one on Oct 17^th, 2004, 8:46am

welll, sorry to know you suffer tooo....

but glad you found this site.

There is an oxygen link to the left ...very helpful.

most who try the oxygen
say it can take the pain away
in less than 10 mintues.

No side effects, and 80% success rate....

Title: Re: hello.....i'm new here
Post by nani on Oct 17^th, 2004, 9:18am

Welcome and I'm sorry you're here. Read everything you can both here and on the OUCH site. You'll find lots of med info.

Title: Re: hello.....i'm new here
Post by Bob_Johnson on Oct 17^th, 2004, 9:43am

Clare, there is no medical reason for this limitation on Imitrex (unless you have some heart condition which you didn't mention). If this is an administrative restriction from your health service you might ask for a sample of this med. Some of us have found it very effective.

Go to the OUCH group in England and see if they have any suggestions on how to deal with your system. (OUCH button on left.)
----------
1: Headache 2001 Sep;41(8):813-6

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.

Title: Re: hello.....i'm new here
Post by LeLimey on Oct 17^th, 2004, 11:20am

Hi Clare, nice to meet you! Wht will your doctor only give you two a week? Thats nucking futs!! Print off some of the info from on here and take it in to him, he obviously doesn't have a clue about CH. If that doesn't work just see a different doctor as two a week is going to get you no where fast. Re the 02, see the ips on here and also on OUCH UK as you can hire regulators from them before you buy.. so you can make sure the O2 works for you!
Hope it helps
Helen

Title: Re: hello.....i'm new here
Post by clare on Oct 17^th, 2004, 12:03pm

hey guys.
thanks for the replys.....much appricated.
my doctor will only give me two injections a week because he says it's all he can afford out of his budget.....which is a load of rubbish. i am under a neuro, and when i told him this he was not happy at all, he said i have to have at lest 12 injections a month as these are the only thing that works for me. (nasel spray works sometimes but takes about 30 mins to get into my system, by this time i'm nearly dead) so he has written a letter to my gp telling him he HAS to give me more!!!!! my gp has to do what he says...

the thought of having another attack makes me feel so down and depressed.......i've had shadows all day so i no its on its way......i dont no how much more i can take.......

Title: Re: hello.....i'm new here
Post by clarence on Oct 17^th, 2004, 12:25pm

Clare,

I am in Scotland, and have had a bit of experience trying to get Imigram and O2 from the doc. I have a fairly understanding doc, so it has been somewhat smooth.
The Imigram - My doc gave me 2 shots the first time around in order to see if it works. Once it did, she has put no restrictions on the amount she will prescribe me. I go back, and ask her directly, and she gives me the script. I think that she hesitates to offer the script, as she asks me what I would like to do, or, what I would suggest about the imigram. I know that it is a costly drug, and it seems that NHS would want to keep costs down. I seem to remember reading in that letter by Dr. Goadsby on the OUCH website that he and his team considered the witholding of sumatriptan because of cost reasons to be medically unethical:

Quote:

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. Although nasal sumatriptan is often used, it is considerably less efficacious than the subcutaneous formulation and there are no controlled studies to support its use.

The O2 - Go to the Ouch UK website. They talk there about a CD cylinder. The tanks that the NHS gives have a regulator that does not provide the flow rate necessary to abort a cluster. So, you have to make other plans, either borrow or buy a regulator through OUCH uk, or try to get a CD cylinder. I had to get the CD cylinder, which was tricky because neither the pharmacy in town that deals with gas, nor my doctor knew what in the world it was. I had to have my doc hand write the script, instead of printing it out from her database, and politely ask the pharmacy to make some calls to the company supplying the gas. It all worked out, but took nearly 2 weeks to get through. In addition, the CD cylinder is small. It doesn't last very long. So, you might want to see if you can set it up so that you can have 2 revolving at the pharmacy. I haven't done this, as I am moving to Canada soon, and it wouldn't be worth the trouble for me.
Finally, you need a non-rebreather mask, which I don't think the NHS provides. I asked for one at the pharmacy, and they had no idea what I was talking about. Maybe that is a comment on the pharmacy... Anyway, OUCH UK has masks available for purchase. You can also modify the NHS mask, but I would try to go through OUCH.

Some Links:
OUCH UK (http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD)
CD Cylinder (http://www.clusterheadaches.org.uk/home/index.cfm?address=../treatments/txt_drug_oxygen_regs_cd.cfm&added=11/08/03&code=CD)
Goadsby Article (http://www.clusterheadaches.org/library/general/management_of_ch.htm)

Hope it goes well for you,
Casey

Title: Re: hello.....i'm new here
Post by Filbert on Oct 17^th, 2004, 9:18pm

Clare welcome but sorry you are suffering so much! Great advice so far but please feel free to post on the sufferers and supporters board of ouchuk because you will be warmly welcomed and any help you need will be given.

All the best Filbert.

Title: Re: hello.....i'm new here
Post by pubgirl on Oct 18^th, 2004, 7:24pm

Clare

You've had some great advice from the people here and good links and help from Casey :D, so just a couple of add-ons:

DON'T print the info off from here, no offence meant to LeLimey and our wonderful American friends but Brit GP's can be really snotty about what they see as "Internet rubbish" (they often ARE prepared however to take note of Goadsby's CH article as he is a Professor at the London Institute of Neurology which the GP's respect)
also the 02 info on the OUCH Uk site is more relevant than the info here, better to refer to that.

Lastly, if you would like more detailed help and advice or want to talk to another Ch sufferer, ring the Helpline and one of the volunteers will call you back (they are all very knowledgeable Ch sufferers)

Wendy

Title: Re: hello.....i'm new here
Post by Charlie on Oct 20^th, 2004, 5:26pm

Welcome and glad you found us. Simon's site at OUCH UK is very good. Here is a technique that I used very effectively:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:

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.

I hope this technique is helpful and I wish you the best of luck

Charlie