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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Therapy Options
        
(Message started by: Beastfodder on Nov 30^th, 2004, 7:07am)

Title: Therapy Options
Post by Beastfodder on Nov 30^th, 2004, 7:07am

[smiley=huh.gif]
Best wishes to fellow sufferers and their partners. I'm posting for the first time and looking for advice.

I've suffered with the beast for the past six years from my mid thirties. However it was only last year when I dug my heels in about having further sinus surgery that my GP applied any lateral thought to my diagnosis.

Typical symptons for a cycle being 2/3 attacks per day - 2 hours after bed and am most prevalent, tearing and nostril streaming initially, aching to burning and boring pain localised behind left eye, rocking in a foetal ball and getting partial displacement relief from really hot baths and getting what I called recurring echoes.

I got so familiar with the beast that during an attack - with a lot of concentration and mental visualisation in a dark room that kip 9s became kip 8s - and that was as good as it got for me during the five week cycle the four times or so that the beast's visited.

At the time last year - towards the end of that particular cluster attack (and also a week away from more surgery I was told) - my doctor decided it was not just sinus related but 'atypical trigeminal neuralgia' and I went on carbazemine, an anticonvulsant. The beast moved on five/six weeks having passed by now.

The precursor for my beast's arrival is always a bad autumn cold - and this year was no different. So it was back to the nasty pills. I also started to research and read about 'tn' and 'atn' (it's probably as bad as the beast if not worse) and came across cluster headches.

For the first time the symptoms matched mine exactly, it wasn't a difficult call for the doctor to make the next day since the beast was paying its morning visit and I'm two weeks in on pizotifen 1.5mg (a migraine inhibitor) and now Maxalt Melt's (the pills didn't always stay down). (BTW First edit said verapamil which was wrong).

Good news is that that this seems to work, having only gone to kip 9 once in the past two weeks and lots of 'shadows' - right now in fact.

The price to pay is that my energy levels have dropped - unlike the appetite. I smoke and drink really little - noticed no connection whatsoever. Overwork/lack of sleep may be responsible for opening up my body to the initial cold virus and my father was similarly beast afflicted.

Are there other options to beat the beast - all advice gladly received. Being self employed I need to work.

I also realise I'm lucky. I have fantastic support from my wife. Seeing the support provided here for fellow sufferers is really rewarding - and I'd be glad to help,

Beastfodder

[smiley=hammer.gif]

Title: Re: Therapy Options
Post by nani on Nov 30^th, 2004, 9:28am

Welcome and I'm sorry you're here. It sounds like now that you have a diagnosis, you can actually get the right treatments. Read all you can here and at the OUCH and OUCH UK sites. There is lots of treatment info. You'll also find friends and people with advice here. It's always good to have a good supporter, so go give your wife a big hug and kiss... :)

Title: Re: Therapy Options
Post by LeLimey on Nov 30^th, 2004, 6:17pm

Hiya!! Nice to meet you. Sorry you are suffering too but top marks to your wife.. us girls are the best!! [smiley=laugh.gif]
Have you tried using Oxygen? It is fantastic I can't praise it enough. The best bit being (apart from the fact it works of course!) is that it is side effect free. You can get different sized cylinders so you can take them out and about with you more easily, I see you are self employed and if you are like my poor hubby that usually means travelling about a bit! There is O2 info here and on the site at OUCH UK which has loads of info on all the meds available for CH too. There is stuff there you can print and show your doctor/family/workmates if applicable and its all well worth a read.
I use O2 and also imigran injections which work really well within 5-10 minutes of jabbing myself. It is also available as a nasal spray which took about 20 mins to work for me but varies for others, some it works quicker for so don't discount it
I hope that helps, come back and let us know how you are getting on!
Take care of you AND your wife!
Helen

Title: Re: Therapy Options
Post by don on Nov 30^th, 2004, 9:44pm

Quote:

I smoke and drink really little

WHAT ? Begone you invasive heathen!

Actually I dont drink at all but smoke up a couple of squares of Camels a day.

Verap, maxalt and a good supporter. Sounds like the beast is meeting his match. Good for you! Kick it's ass.

What dosage of verapamil are you on and how effective has the Maxalt been?

Title: Re: Therapy Options
Post by Beastfodder on Dec 1^st, 2004, 6:28am

Thanks for all the feedback, my wife wondered what had come over me when she got in lst night!

As for Don's question about Verapamil it's 1.5mg daily and I'm 16 days in on a 28 day course.

Do wonder if I should take them am or pm seeing as there's this continual lethargy.

Of the two forms of Maxalt I've tried the sublingual 'Melts' are far the smarter option and over the past week they missed just one bad ch. It's about 5-10 minutes to work and they tend to stay down. Still lots of shadows which suggests things are being managed.

Oxygen too I shall explore - before I had the diagnosis I found breathing from the diaphragm and concentrating on staying on top of the pain kept things controllable. Might be a wiser call for non-smokers tho!

Title: Re: Therapy Options
Post by unsolved1 on Dec 1^st, 2004, 9:08am

Your Verapamil dosage must be wrong. I've never heard of Verapamil in such LOW doses. Smallest dose I've ever seen was a 40mg dose. I take 180mg twice a day now.

Unsolved

PS....A 28 day course [smiley=huh.gif]

Title: Re: Therapy Options
Post by Beastfodder on Dec 1^st, 2004, 10:50am

Doh - I've just checked and I'm totally wrong about the Verapamil it's 1.5mg of pizotifen for the 28 days (It is an antihistamine and serotonin antagonist structurally related to the tricyclic antidepressants according to the web and used in the prophylaxis of migraine).

Title: Re: Therapy Options
Post by Gator on Dec 1^st, 2004, 11:51pm

Howdie BF!

Welcome to the website. Sorry you have a reason to look for us, but damned glad you found us. This is the best place in the world for info on ch and for support. There is also an area for your wife as well. Let her know she's welcomed here, too. Take good care of her. You'd be surprised and saddened at how many people don't have any support.

Here's a useful item to print out for you and your doc. It contains preventative, transitional, abortive and surgical alternatives in the treatment of ch.

http://www.future-drugs.com/admin/articlefile/ERN020304.pdf

Here are some non-medical alternatives. I would check with your doctor before taking any kind of supplements to make sure they won't react with your meds. Keep in mind not everything works for everyone. You'll spend some time doing trial and error, but it may save you some $$$ on aborts.

http://www.clusterheadaches.org/resources/non_script_treat.htm

Here is a link to oxygen information. If you end up having to go the welder's O2 route, there are several people here that can help you get a rig set up.

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

PFDAN to ya, dude.

Gator

Title: Re: Therapy Options
Post by Bob_Johnson on Dec 3^rd, 2004, 8:58am

WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.

Title: Re: Therapy Options
Post by jessipo on Dec 4^th, 2004, 3:41pm

Have you tried a shot, not inhalant, of Imitrex immediately when the symptoms begin? Also, I've heard that 100% o2 helps, although it didn't work for me. Have you tried trigger shots? Their done in your neuro or pain specialist's office. They stick a needle in your head and give a shot to the nerve (?) I guess of a mixture of steroid, lidocaine and maybe something else, I dunno. This works for me about a month and a half, then I go in for another. Just a thought.

Hope you get some relief soon. I know that clusters are really hard to treat unless you get completely sedated, or have the o2. Also, if you have to go to the ER, like I had to last week, ask for INAPSIN (sp?). It was absolutely fantastic. Knocked me out completely, but the next day I wasn't groggy or feeling drugged and by that time the cluster had passed.

Jessipo