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Topic: Hey, i am new! (Read 487 times) |
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Avicus
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Umm i am new here (if you haven't already guessed *L*)
I have just recently found that i suffer with cluster headaches, so i thought i would check this place out and see what's what.
Anyways, thanx for reading this as i am a bit clueless with what cluster headaches actually are, i only know they really hurt.
Cheers
Avicus.
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thomas
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Yes they do hurt. Read all the stuff on the left and stick around. 
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Avicus
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Thanx man.
I will be around alot of the time, since i am off work at the moment with it.
Avicus.
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thomas
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That sucks. I hope you are pain free soon.
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vig
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Re: Hey, i am new!
« Reply #4 on: Nov 12th, 2003, 10:33am » |
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How badly are you getting hit?
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never, Never, NEVER quit. -Winston Churchill
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Killroy 2.0
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Re: Hey, i am new!
« Reply #5 on: Nov 12th, 2003, 10:33am » |
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Wishing you PF days quickly
Gena
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Lori
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Re: Hey, i am new!
« Reply #6 on: Nov 12th, 2003, 10:47am » |
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Welcome and glad you found this place. Hope the pain leaves you soon!
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Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
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drnoe
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Hi,
and welcome.
Ditto the above writers. The knowledge here is fantastic, be an expert
on CH cause most doctors AREN'T.
I'm in Los Angeles and it looks like rain.
YES!
cheers,
Dan
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ZAIRA
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Re: Hey, i am new!
« Reply #8 on: Nov 12th, 2003, 11:32am » |
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Sorry you suffer this horrible condition and have to be here, but now you’ll find all the support and advice you’ll need from the other experts  , and.... you are in good company here!
Welcome!
PFDAN, Zaira
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Love yourself, Love others, Love often, Forever!
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Avicus
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Thanx you guys for making this poor english gent feel welcome *S*
I suffer quite a bit, the attacks have been more recnet in the past years or so, and the pain is from the left side of my head... It sucks so bad.
And yes doctors know nothing really about this condition, it has taken me nine months to be diaganosed, at first they thought it was MS. But that was ruled out after an MRI scan.
At the moment, i am using painkillers (co-codamol) and Pizoifen (also called Sanomigran). I just wondered if you guys knew of a better prescrition drug, so that maybe i could inform the doctor. The pizotifen does work, but not always and it causes depression. Great huh? *L*.
Anyways theres enough of my stuff, i just want to thank you guys again for be so hospitable.
And my name Is Dave, just so you know *G*
Thanx.
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Avicus
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hehehehe and ignore my spelling mistakes! *G*
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pubgirl
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Avicus
I'm surprised you have been prescribed Pizotifen for CH as in the UK it is usually given as a migraine preventive.
Verdict for prevention of CH is pretty poor. Are you sure they have diagnosed CH?
Have you registered on OUCH UK(www.clusterheadaches.org.uk) or follow the link on the left here to OUCh website, then click on OUCH UK. Think I have seen you using another name haven't I?
The advice there is as good as here, and maybe better due to being about the UK healthcare system and drugs.
Good luck and happy reading.
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Avicus
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Thank you Pub girl, no i didn't check out OUCH, i will do now.
Yeah i looked up Pizotifen and it is for Migranes... strange as the doc told me it would work for CH. And i am sure it's CH or at least i am sure that the hospitals and doctors think that, i certainly have a lot of the symptoms.
Forgive my ignorance on this, as i said i am only just learning what CH are.
Thanx
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pubgirl
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Avicus
Either you have a crap GP who is giving you migraine drugs, or a crap GP who thinks he is giving you a good drug for CH.
Either way he's CRAP!
Read as much as you can on either site about the best treatments (you need a decent abortive primarily such as Imigran or 02 or both)
Print of the stuff from the UK site by Goadsby and take it to your GP, get what you need.
If he won't and keeps giving you Pizotifen (which will probably make you sleepy, fat AND with headaches)
GET RID OF HIM AND GET A NEW GP!!
Good luck and post away for more help
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Woobie
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Re: Hey, i am new!
« Reply #14 on: Nov 12th, 2003, 2:25pm » |
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Oxygen!!!!
Hi and welcome... I am a supporter = do you have one??
PF to you!!
tina
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Cooked Brain
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a.k.a. Max Payne, YOUCH this hurts...
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Re: Hey, i am new!
« Reply #15 on: Nov 12th, 2003, 3:39pm » |
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 Avicus and welcome!
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River_Rat
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Re: Hey, i am new!
« Reply #16 on: Nov 12th, 2003, 3:50pm » |
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Just read a lot, and welcome!
LEE
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Little Deb
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Re: Hey, i am new!
« Reply #17 on: Nov 12th, 2003, 3:59pm » |
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Just want to say welcome. This is the best place to be.
Wishing you relief soon.
Little Deb
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ClusterChuck
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the button at the left Re: Hey, i am new!
« Reply #18 on: Nov 12th, 2003, 4:10pm » |
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Sorry you have to be here, Dave, but welcome aboard!
You asked about drugs. There are two avenues of attack:
Abortive: this stops, or lessens the hit, once you have it. The two most successful are 100% oxygen (read the button on the left, because if not taken right, it will not work), and Imitrex. Imitrex is available in three forms, a pill (least effective), a nasal spray, and a self injection (most effective).
Preventative: This is a medication that will stop, or lessen the severity of the cluster cycle. Many take a while to build up to an effective level. The most successful preventative is verapamil. Many times, a combination or "cocktail" is needed in order to get them back under control.
Unfortunately, there is nothing that works for everyone. Many time you have to go through trial and error until you find the right combination that will work for you.
You need to read up on all the information, so that you know what is available, and print out this information, and bring it with you to your doctor.
Good luck, and keep us informed as to how you are doing!
Chuck
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The mad viking
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Re: Hey, i am new!
« Reply #19 on: Nov 12th, 2003, 4:21pm » |
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Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for at least 15 minutes on a nonbreathermask or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few seconds after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg every 3dh day
Tapering down the verap im on full dozage 7 days after my last hit,then over the next 5 weeks im down to 1/daily.
after 1 week on Verap retard 120mgX1 and still no hits i can quit that to
The very best from Svenn
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Always Look on The Bright Side of Life
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Prense
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Re: Hey, i am new!
« Reply #20 on: Nov 12th, 2003, 7:24pm » |
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Welcome aboard Dave!
I cannot give any advice that hasn't been given yet...just wanted to welcome you here.
on Nov 12th, 2003, 1:36pm, Avicus wrote:| And yes doctors know nothing really about this condition, it has taken me nine months to be diaganosed, at first they thought it was MS. But that was ruled out after an MRI scan. |
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Oh, I thought the only way to rule out MS was through a spinal tap...MRI can show evidence, but a clean one doesn't rule it out. I could have bad info.
Regards!
Chris
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| « Last Edit: Nov 12th, 2003, 7:24pm by Prense » |
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BobG
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Re: Hey, i am new!
« Reply #21 on: Nov 13th, 2003, 12:04am » |
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Welcome Dave.
Quote:| I suffer quite a bit, It sucks so bad they really hurt |
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TxBasslady
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Re: Hey, i am new!
« Reply #22 on: Nov 13th, 2003, 12:27am » |
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Hi Dave........Welcome to the board.
As you will see, by reading all the threads and the links on the left, alot of meds work for some and not for others. I, too, have a migraine med for my CH. So, don't get too concerned about taking it for CH. Again, everyone is different. The meds I take reduce my pain from an hour or more, down to 13 minutes. So, really I could care less if it is a migraine med. As long as it works !!
I hope you find what you need here on the board. There are some really great folks here. There is usually someone here 24/7, so feel free to post around the clock if you need too. Stay in touch and let us know how you are doing.
Jean
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AlanG
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Re: Hey, i am new!
« Reply #23 on: Nov 13th, 2003, 1:27am » |
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Welcome Avicus,
I live in the USA but I was Raised In Cheltenham. Like you my pain is also on the left of my face. I was prescribed Oxygen gas to breath and it works wonders in getting rid of the pain, Doesnt cure me or stop me from getting pain attacks, but it stops the pain so I dont spend 3 hours or more screaming my head off. I went into another pain cycle yesterday...got woke up about 5 times during the night and had to hit the O2. today same old same old. pain gas pain gas. O well as long as its not pain scream pain scream LOL. got to look at the brighter side. 
keep comingback and stay in touch...sometimes this CH will kick your ass totally and you will need support. I know Ive had it for 9 years now and only just recenty diagnosed with it. My doctors thought it was sinus problems, then after 3 years..trigeminal neuralgia. so I screamed my head off for 9 years without Oxygen...now im settling down. welcome.
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pubgirl
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Jean is right, some migraine meds are brilliant because many of the CH meds started out as migraine meds! Sadly the drug companies probably think there is more money to be made to develop migraine drugs than CH. If they did their sums properly though they would know that we take our drugs FAR more often so they could make loads of money out of us.
BUT a GP who is only giving Pizotifen as treatment for CH doesn't know what they are doing!
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| « Last Edit: Nov 13th, 2003, 3:49am by pubgirl » |
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