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New member, first post! (Read 2701 times)

Simon B

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New member, first post!
May 6^th, 2009 at 5:48am

Hi all just found the site this morning. It's great to know that we are not alone. i first started with CH about 15 years ago and wasn't sure what they were. I suffered in silence for many years then my wife urged me to see a doctor, I was referred for a brain scan which found nothing abnormal (I was worried that I had a tumour!). I have tried every over the counter pain releif but to no avail. I found your site mid cycle and am now experiencing a 4-5 on the kip scale. Does anyone have any good coping strategies when there are no medicinal options available.

I have had many sleepless nights pacing,gnashing,sweating etc.

I hope to post as often as I can now that I have found this amazing site!!!!!

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Lefty

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Re: New member, first post!
Reply #1 - May 6^th, 2009 at 6:54am

Simon B wrote on May 6^th, 2009 at 5:48am:

Does anyone have any good coping strategies when there are no medicinal options available.

Hi Simon there is a wealth of medicinal options available to you please follow the link below and do some reading and you will be amazed at the various treatments that are on hand to will help you with your fight against this infliction. It will also help us to help you if you can tell us a little more about yourself i.e where your from and what meds or treatments you are on, and if not why not....?

Welcome to the board and glad you found us...!

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Lefty...!

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Val_

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Re: New member, first post!
Reply #2 - May 6^th, 2009 at 7:13am

Hey Simon - Welcome!

You asked: Quote:

Does anyone have any good coping strategies when there are no medicinal options available.

Many on the boards recommend quickly drinking an energy drink with 1000 mg Taurine such as Red Bull or the Rock Star/Monster Coffee drinks (not carbonated) - just make sure they have the Taurine. The combination of the two ingredients - caffeine and taurine can help with a hit. Try to drink it as soon as you feel it coming on. I have experienced the level of - say - your 4 or 5 knocked down a few. If they are not handy, strong coffee is a second alternative!!
Can also try ice on the affected spot of pain or the back of the neck! (Some try heat if ice doesn't work - for each their own.)
A cold (or hot as I said before everyone is different) shower may help!

Melatonin is an over-the-counter method that many use to help them sleep and avoid night hits. (6-18mg Melatonin is recommended and I've seen some recommendations dosing it up - 3mg for a few days, 6 mg for a few days, 9 for a few - see how your body adjusts. Some people need less, some people don't need it for night time!)

Hoping something works for you -
If you Can get something, try to read on the left about oxygen as an abortive - it's a cheap effective cluster abortive... not sure if you are not looking for meds, etc. but O2 has no side effects and works for so many!

Val

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BarbaraD

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Re: New member, first post!
Reply #3 - May 6^th, 2009 at 7:56am

O2 O2 O2 - used properly with the RIGHT mask helps about 70% of us. There have been a lot of new things in the last few years. Read the O2 info on the left - it gives detail instructions on the usage and what is needed to use it properly.

Welcome to Clusterville. Pull up a chair and sit a spell. Glad you're here, but sorry you have to be. We're here to help, so ask questions and we'll try to answer them. We've all been where you are and UNDERSTAND what you're going thru.

Tell us a little about yourself - what you've taken, etc.

We're here to help. Again welcome.

Hugs BD Kiss

What don't kill ya, Makes ya stronger!

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Simon B CH.com Newbie Offline I Love CH.com! Posts: 3	Re: New member, first post! Reply #4 - May 6^th, 2009 at 8:20am Thanks for the welcome guys, much appreciated. I am from the UK and have never heard of th O2 therapy option. Not sure if UK doctors prescribe that one!! I was prescribed some sort of epilepsy drug a few years ago but the first time I took it I was violently sick. I have really suffered in silence since.
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midwestbeth CH.com Sponsor Offline Posts: 1123 Edwardsville, IL Gender:	Re: New member, first post! Reply #5 - May 6^th, 2009 at 9:44am Hi Simon and welcome! You have been given some good advice. Glad you found us. You no longer have to suffer in silence. pf wishes to you, Beth
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LadyLuv

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Re: New member, first post!
Reply #6 - May 6^th, 2009 at 9:55am

Welcome to the Family Simon....

One of the best things about this group (and there are many), is the fact that there is someone there 4 you 24/7.

One of the first things I learned, after finding this sight; is that there is always some one there to offer comfort and advise. We feed off of each other... each person here either suffer with CH, or we support/know someone that suffers with them.

I'll keep you in my Prayers...

Peace & Blessings
LadyLuv

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Guiseppi

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Re: New member, first post!
Reply #7 - May 6^th, 2009 at 10:44am

Welcome to the board Simon! We haven't found a cure....yet.....but with a 2 pronged approach you can bring the beast into a manageable mode!

1: A good preventative medication. That's something you take daily, while on cycle, to reduce the frequency and the intensity of your hits. I use lithium at 1200 mg a day. It will block about 70-80% of my attacks. Verapamil, normally a blood pressure medication, and topomax are 2 other popular prevents that have enjoyed success with people on the board.

All of the above are medications which require you work closely with your doctor to establish what the correct dosing level for you is.

2: A good abortive regimen. A headache starts now what? As you've already read, oxygen should be your first line abortive. 31 years of CH and I can abort an attack in as little as 6-8 minutes by breathing pure oxygen. Read the oxygen info link on the left as it must be used correctly or it's worthless. Imitrex injectables and nasal spray are also effective abortives for many.

This is just a start. The biggest problem with CH is it's rare and doc's can go a whole career without ever seeing a CH patient. That makes it YOUR job to educate yourself, then partner with a doctor to manage your care. We'll help you every step of the way. Welcome home.

Joe

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ClusterChuck

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Re: New member, first post!
Reply #8 - May 6^th, 2009 at 11:40am

In answer to your question, YES, the doctors that keep up on treatment do prescribe O₂ as an abortive medication for cluster headaches. If they do NOT, tell them to look it up in their book, and it DOES specify O₂.

You might want to join up with the OUCH/UK group (Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

), as they are right there, and are a GREAT spot for assistance in dealing with the local requirements.

Again, Welcome HOME!

Chuck

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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McGee

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Re: New member, first post!
Reply #9 - May 6^th, 2009 at 11:54am

Hi simon,
Welcome Smiley

lots and lots and lots of info here, great bunch of guys (and girls) be carefull theres a few wierdo´s on here, im the only normal one, you can be my new best friend Smiley

humour i find gets me through the day and coffee lots and lots of coffee.

lots of pain free days

mark (best bud Smiley

) (sorry just been one of those days)

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Inventive_Mind

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Re: New member, first post!
Reply #10 - May 6^th, 2009 at 11:54am

Hi Simon Welcome,

As for non medicinal coping I for one use a hot shower (as hot as I can stand it) and let the water run on my left temple down the side of my face as best I can while sitting in the tub. I have also tried ice packs (bag-o-peas) but prefer the hot water. I also use strong coffee or energy drinks a the onset if available. My oxygen setup is a welding tank and regulator with a mask grafted on to an old torch.

But as everyone has pointed out this is a personal disease and what works for me may not on you. Get some oxygen and go from there, read all you can on what others have used (Look Left) then educate your doctor.

Finally remember your not alone now and that meant more to me than anything else, just to know I wasn't alone battling through this.

~James

There are no new ideas, just moments of divine clarity

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Dyno

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Re: New member, first post!
Reply #11 - May 7^th, 2009 at 2:06am

Hi Simon

Quote:

I am from the UK and have never heard of th O2 therapy option. Not sure if UK doctors prescribe that one!!

as Chuck said, YES - (this is from a previous post save typing it again).

Quote:

You could also ask your doctor to look in his BNF (British National Formulary - GP's prescribing bible) section 4.7.4.3 on cluster headache and he will see that Imigran injections are the only licensed treatment for CH, and that high flow oxygen is also recommended.

If you've got a printer, go to this link and download a part completed HOOF form. Take it along to him, get it filled in, and ask him to fax it off to your local oxygen supplier.

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

and why don't you give the OUCH(UK) helpline a call - leave your number (preferably a landline number) and somebody will get back to you.

Quote:

Does anyone have any good coping strategies when there are no medicinal options available

.

Why are there no medical options available?
What preventatives have you tried? Have you tried Imigran Injections? Who diagnosed you?
The helpline will be able to advise you - you don't have to be a member of OUCH to call the number below.

Good luck

Rod

« Last Edit: May 7^th, 2009 at 2:10am by Dyno »

OUCH(UK)

"THEY'RE CRUCIAL, THEY'RE UNIQUE AND THEY'RE EXPERT"

Quote; Prof. Peter Goadsby 2007

OUCH(UK) HELPLINE No 01646 651979

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Simon B CH.com Newbie Offline I Love CH.com! Posts: 3	Re: New member, first post! Reply #12 - May 13^th, 2009 at 9:31am Went back to my GP yesterday re CH. He dismissed 02 as heresay evidence and has never read any information on it as a treatment. He once again prescribed sumatriptan. As i said in an earlier post, this made me sick last time i tried it
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Guiseppi

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Re: New member, first post!
Reply #13 - May 13^th, 2009 at 10:35am

With all due respect to his education and professional standing your doctor is a closed minded fu%$ing moron. Your only hope for relief is a new doctor or going outside the medical profession.

Welding oxygen is exactly the same as medical oxygen. You just can't tell the people at the welding shops you're filling your tanks for personal use. Requires some technical advice that you can obtain here if you need it.

Get thee to new doctor. Print out the info from the "oxygen info" link off of this board and find a more intelligent doctor or at least an open minded one. Patiently sitting in front of this close minded idiot and saying fix me is a recipe for many log, painful days.

joe

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Dr.mike

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Re: New member, first post!
Reply #14 - May 13^th, 2009 at 1:33pm

Your Doctor said what????
Simon, I have had CH most of my life and I am in my 50s now. The only thing that works for me is O2. My doctors have been prescribing it for about 25 years. I have 2 cylinders installed in a room at home. Depending on where you live they will even deliver the O2 for free.
If your Doctor said that to you, please PM me and I will report him. that type of ignorance from Doctors in the UK is no longer acceptable. If he has that attitude to CH, how many other patents is he ignoring or mis diagnosing?

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mrs mac

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Re: New member, first post!
Reply #15 - May 13^th, 2009 at 1:55pm

Simon

sorry u are having problems getting o2, please phone the UK helpline as dyno has mentioned, we can give u the best advice on dealing with your gp re oxygen!!!!!

the number is 01646 651 979, it is "manned" by sufferers and supporters, and as mentioned, u don't have to be a member to phone!!!

just leave a short message, and contact no, (pref landline) and someone will get back to u!!!!

sandra x

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Dyno

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Re: New member, first post!
Reply #16 - May 13^th, 2009 at 2:09pm

Quote:

He dismissed 02 as heresay evidence and has never read any information on it as a treatment

What a load of bollocks. Go to the Practice Manager at your surgery and complain that you are being denied medication, as stated in the BNF, that may help releive your condition, . If that fails go to your PCT and complain to them.

Did you ask him to look in his BNF? - The section under Cluster Headache was written by Prof.P. Goadsby one of the worlds leading experts on headache conditions.

Were you able to print off the partly completed HOOF order form?
If you were - did you show it to him?

Have you called the OUCH help line yet?

OUCH(UK)

"THEY'RE CRUCIAL, THEY'RE UNIQUE AND THEY'RE EXPERT"

Quote; Prof. Peter Goadsby 2007

OUCH(UK) HELPLINE No 01646 651979

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j0hnglist

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Re: New member, first post!
Reply #17 - May 13^th, 2009 at 2:24pm

Simon B wrote on May 13^th, 2009 at 9:31am:

Went back to my GP yesterday re CH. He dismissed 02 as heresay evidence and has never read any information on it as a treatment. He once again prescribed sumatriptan. As i said in an earlier post, this made me sick last time i tried it Sad

WELCOME. I loathe the way sumatriptan makes me feel. Also there some evidence it causes Rebound headaches possibly. I avoid it like the plague. Then again, maybe my opinion is not fair because it doesn't even help me. For most it provides some relief in the injectable form if done quick enough. But don't abuse it. It is not meant ot be taken every day for instance. Chances are, if your neuro never heard of O2, hes not qualified, find a new doc.

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