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R33_Ian

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First 4 weeks!
Sep 13^th, 2010 at 10:13am

Hi all, I'm not a full card carrying member of the cluster club yet but my doctor and I are pretty sure it's what I'm dealing with. It will be 4 weeks tomorrow since my first HA and I've been on a few meds over the last few weeks from antibiotics to amitriptyline. As a trial my doctor gave me Imigran nasal sprays which was the biggest relief!

I've started taking Propanalol during an exhausting weekend of attacks and getting used to my new low bp. My doctor doesn't seem to be a CH expert in any sense but is very understanding and willing to help.

Just wondering if anyone has had any good experiences with Propanolol or whether it's the wrong thing all together? Would like to know as I'm supposed to double my dose in 4 days.

It's nice to see (although a little scary) there are others out there and there seems to be lots of advice and support. You guys do a good job!

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Agostino Leyre CH.com Sponsor Offline "Hit like a phillips head into my brain." Posts: 3803 Madison WI USA Gender:	Re: First 4 weeks! Reply #1 - Sep 13^th, 2010 at 10:36am Hope it helps. Haven't personally tried it. It looks like it might have some success as it seems to be a blood pressure and mild anti-seizure medicine.
Back to top	« Last Edit: Sep 13^th, 2010 at 10:37am by Agostino Leyre » Triptans cause increased number of hits and increased intensity. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.&& IP Logged

Guiseppi

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Re: First 4 weeks!
Reply #2 - Sep 13^th, 2010 at 11:29am

Welcome to the board. If you have a doc who will listen to you........read the oxygen info link on the left and get him to give you a prescription for home 02. An E-Tank, a regulator that goes to 25 LPM and a Non Re Breather Mask. 32 year sufferer here and NOTHING can touch 02 for consistent, cheap, FAST relief of an attack, typically 6-8 minutes and I'm pain free.

Welcome to the board, hope the cycle is winding down and GET 02!!!

Joe

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Lettucehead

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Re: First 4 weeks!
Reply #3 - Sep 13^th, 2010 at 1:43pm

Hi Ian!

Welcome!

Propanolol, a beta-blocker, is one of the 1st meds that docs prescribe for issues with headache. It does have some particularly good results for migraine headache.

Unfortunately, it is not one of the 1st line drugs for CH. If your doc is concerned about CH, you will likely do better with verapamil which is a calcium channel med. You may want to talk to your doc about switching.

And o2! Definitely talk to your doc about O2!!!!

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Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH

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R33_Ian

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Re: First 4 weeks!
Reply #4 - Sep 13^th, 2010 at 2:40pm

Thanks guys,

I think CH is pretty new to my doctor so we went down the amitriptyline (muscle relaxant) route first and when I reacted well to the sumatriptan trial he moved me down the migraine treatment route (propanolol). I'm pretty new to doctors in general as I've not been for years! I'm seeing him next week to let him know how I'm getting on so I'll speak to him some more.

Do you recommend seeing a specialist/neurologist?

I'm hoping the propanolol works, I've had a pretty good few days (touch wood) but I have no idea whether its the meds or a bad day coming tomorrow. I have had a few shadows but no attacks for a good day and a half. Hopefully its coming to an end soon. I hate the not knowing as much as the pain I think!......well almost!

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« Last Edit: Sep 13^th, 2010 at 2:43pm by R33_Ian »

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: First 4 weeks! Reply #5 - Sep 13^th, 2010 at 2:51pm If you go to a neuro it needs to be a headache specialist neuro....CH is such a rare ailment even neuro's generally don't see much of it. If you have an open minded GP who'll listen to what you bring him and work WITH you......well they're worth their weight in gold. Joe
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R33_Ian

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Re: First 4 weeks!
Reply #6 - Sep 13^th, 2010 at 3:00pm

Ok thanks. I didn't know if seeing my GP was good enough really as far as diagnosis and prophylactics go. I figured if the doctor gives me what we think I need that should be enough for now. I'd never heard of CH till a few weeks ago and only my wife seems to understand what I'm talking about. I have no idea how much is known in the UK but I've seen a few posters from here and have seen the OUCH uk site.

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« Last Edit: Sep 13^th, 2010 at 3:01pm by R33_Ian »

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Linda_Howell

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Re: First 4 weeks!
Reply #7 - Sep 13^th, 2010 at 7:22pm

Quote:

My doctor doesn't seem to be a CH expert in any sense but is very understanding and willing to help.

THAT my friend is a huge hurtle. Most of our Doctors haven't got a clue and are NOT willing to work with us who probably know more than they do.

He putting you on antyibiotics is a mystery to us though. Unless you have something else going on antibiotics won't help.

Since you have a Dr. who is willing to work with you the best thing we can tell you is to educate yourself on this condition so you can tell HIM what you need.

Read the oxygen link and get him to prescribe it like Guiseppi said. It is a 1st. line abortive for about 80% of us.

Oh...and welcome to this site. Linda

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Batch

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Re: First 4 weeks!
Reply #8 - Sep 14^th, 2010 at 12:54am

Hey Ian,

Welcome aboard. You're fortunate to have a physician willing to work with you. You may want to share the following information from the National Guideline Clearing House recommended Standards of Care in the treatment of cluster headache and other other trigeminal-autonomic cephalalgias with him. The full writeup can be found at the following link:

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

or

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

or

This list of recommended treatments was developed by a task force from the European Federation of Neurological Societies (EFNS) that includeded: May A, Leone M, Afra J, Linde M, Sandor PS, Evers S, Goadsby PJ.

I realize these names may not mean much to you at this point, but they represent some of the greatest minds on the "Who's Who" list of neurologists specializing in the treatment of cluster headache.

You'll notice that oxygen therapy at a flow rate of 15 liters/minute tops the list as the first abortive of choice as an acute treatment for cluster headache.

If it turns out you do have cluster headache, you might want to check with the folks at OUCH-UK. They can provide you with the "How To" go about obtaining home oxygen therapy with the least amount of hassle.

Take care,

V/R, Batch

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« Last Edit: Sep 14^th, 2010 at 12:55am by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: First 4 weeks! Reply #9 - Sep 14^th, 2010 at 7:57am I'm on amitriptyline but not by itself: with verapamil, and a few other things like energy drinks, O2 and melatonin. I believe it has helped me but I'm not gonna bust up the cocktail just now. Everything's working so far. Good luck and do get a neuro or headache specialist if you can. God bless. lance
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R33_Ian

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Re: First 4 weeks!
Reply #10 - Sep 14^th, 2010 at 9:51am

I gave up on the amitriptyline after about 5 days as it didn't help at all. It can be nice as a sleeping aid though. Although one morning I had an attack around 3 am (I'm normally a day sufferer) and I didn't know my head from my...other parts. Wasn't too keen on taking it after that. I know what you mean about not changing anything.

Thanks for the replies

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