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Cluster Headache Help and Support >> Getting to Know Ya >> About time I said hello http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1298840351 Message started by the scone on Feb 27th, 2011 at 3:59pm |
Title: About time I said hello Post by the scone on Feb 27th, 2011 at 3:59pm
Hello and firstly thank you all for the help and support you provide.
It's about 5 years since I last lurked here and I must say the info and help is much more precise and informed. Much appreciated. I am a 49 year old episodic cluster sufferer since 1999. I use o2 @15lpm and a Clustermasx. My cycle is roughly every 20 months and has always lasted 40 days - until now. I was very lucky to be diagnosed the day after my first attacks which I of course though was a brain tumor. I was prescribed Migril which I used incorrectly, but successfully, as a preventative. Second bout and I moved on to Verapamil and Zomig. Third bout was Verapamil and Imigran 20ml nasal spary. Number four, and finally I get perscribed o2 after year long battle. Happy days! :) ... and I decided to drop the Verapamil and Imigran for the next bout. This worked great for the last two bouts and I felt so much better between hits without those meds. Current bout started on the 3rd January and had 3-5 night-time and morning hits daily for the first 43 days. Strange, and lucky thing was, they were all only kip 4 or 5. All were aborted successfully using o2 in 10 minutes max . Day 47 things changed when I started getting daytime hits as well. So now I'm at 7-10 hits a day and am into a longer bout than usual. Day 52 and suddenly the o2 doesn't work. Following the advice found here, if I had no luck after 15 mins I would ride it out for 10 mins and then hit the o2 again. Kip level is up a bit too. Day 54 and the o2 does not abort 60% of the attacks even after taking a break. Now, here's the bad news, the minute I touch the o2 the KIP shoots up to 8 or more and the attack lasts an hour or more. I've read and read here over the last few months but havn't come across this reaction to o2. Mind you, there's a lot here and I havn't read everything!! This morning I had my 196th attack this bout.A Kip 10 which lasted 2 hours. It was immediately followed by my first ever panic attack which nearly frightened my poor mother to death! I am knackered, pissed off and just a little bit scared!! Simon |
Title: Re: About time I said hello Post by Batty on Feb 27th, 2011 at 4:27pm
Hi Simon and Welcome back!
I cannot comment on your latest fight but there will be the Vets along soon! We will try to get you sorted re being knackered (my biggest problem now too!) and we can do something about you being pissed off and scared! Even if its just letting you know your'e not alone with this mate! Respect and hang in there! Gary |
Title: Re: About time I said hello Post by Bob Johnson on Feb 28th, 2011 at 3:05pm
If there is any comfort in it, your experience with O2 stopping working is all too common with many/most of the meds we use. There hasn't been any research on why this occurs but the response is always the same: we screw up our persistence and start running a new set of trials with different meds until we find something (and the dose) which works.
Just reflects how little is understood about the mechanisms/processes of Cluster. |
Title: Re: About time I said hello Post by the scone on Mar 1st, 2011 at 8:53am
Thanks folks for your support.
I am just coming out of a 5 hour attack. My nose is now numb - another new one to me. Again, O2 just made it worse but I was woken from sleep so maybe it was too late for the o2. I did notice that I had a few milliseconds of relief when I cried. Try it!! Numbnose... ye gotta laugh. Think I'll change my username :) I think (hope) part of my problem was I'd got so used to relatively mild hits that I'd forgotten how severe a K10 was and was waiting too long to jump on the O2 . It can be so confusing sometimes trying to work out whether it's just a shadow or the onset of another attack. I am using two B10 cylinders and two mouthpieces to ensure a constant supply. I have read all about Busting but it's not so easy in a country where we burn down headshops. I am using plenty of Sugar Free Red Bull. I have started Batch's Omega and D3 regime and have ordered some Melatonin and I suppose I should go to my GP and get some TREX but what about Pred or Vera? Is it pointless to start them as I am 58 days into this cycle? |
Title: Re: About time I said hello Post by bejeeber on Mar 1st, 2011 at 4:10pm
That's such a tough call about pred and vera since you don't know if you're at the end of the cycle or not, and pred is suspected by some of us including myself of having the capability of extending an episode.
I wonder if you can order RC seeds online and possess them legally as we can here in the US? Bringing that up because they are a natural form of busting that has such mild - and so far seemingly harmless - side effects. In my book at least they come under the category of "can't hurt to try". Don't you just love that little surprise where after years of consistent length episodes, the beast will arbitrarily decide to just go ahead and extend his visit? >:( That phenomenon is definitely not uncommon. :( Over the years I've gone from 30 day episodes to most recently 75 days. |
Title: Re: About time I said hello Post by Glassman on Mar 3rd, 2011 at 9:35am
Hey Scone...(Numbnose, that is a good one! ;))
When I was using O2 during my most recent bout, I noticed if I was sound asleep it took me longer to get to the oxygen and consequently would not work and I'd be forced to run home to Mama Imitrex. Batch, our O2 guru, may weigh in here shortly with some insight for you. I asked for a Pred taper from my Doc and it was a week long miracle. Meaning, they came back at the end but it was such a relief to have five days pain free. My doc then started me on Verapamil (not the recommended course as the Verap should have been prescribed with the start of the Prednisone) and I was good after that. I know it can be difficult but keep your hopes up and tuned into the message board. I practically lived at the message board! |
Title: Re: About time I said hello Post by numbnose on Mar 5th, 2011 at 2:37pm bejeeber wrote on Mar 1st, 2011 at 4:10pm:
bejeeber, sorry about your 75 days but it does encourage me if you know what I mean. I have decided to go for it and ordered some RC's by post. Can't establish their legal position over here but I am hoping it's the same as the UK seeing as that is the source. Guess I'll find out when the delivery guy smiles - or not!! :-/ Glassman wrote on Mar 3rd, 2011 at 9:35am:
Hi Glassman, this brings up something I was thinking about. I have some Melatonin on the way. If we wake after taking Melatonin won't we be further into the attack making it harder for the o2 to work? Numbnose it is so!! ;D cheers guys. |
Title: Re: About time I said hello Post by Glassman on Mar 5th, 2011 at 5:56pm
Numbnose, (do like the name change!)
That's what I kinda thought, and the Melotonin did seem to put me in such a deep sleep it took me longer to wake so I did give it up. I was then able to wake sooner and get the O2 mojo working better for me. But I think it's important to give it a try cuz it does work for some people. |
Title: Re: About time I said hello Post by bejeeber on Mar 5th, 2011 at 9:54pm
On the bright side Simon, besides the longer episodes, longer and longer remissions are also common as the decades with CH fling by.
No guarantee that any given individual will experience longer remissions, but they do make the longer episodes "worth it", so I hope you too are in store for some luxurious years without CH. :) |
Title: Re: About time I said hello Post by numbnose on Mar 30th, 2011 at 1:31pm
5 days PF now so I'm thinking this bout is over. 80 days exactly.
Typical beast, my last attack was the day my O2ptimasks arrived(thanks guys!!! ;) ). Next day Melatonin and RC Seeds. Havn't had to use any of them. ::) The o2 started to work again after 8 days albeit having to hit it twice,with a 10min gap. Then slowly became normal aborts in 10-15 mins. Never got to give the D3 and Omega a proper go as starting them coincided with the O2 not working so in the panic I stopped taking them! It looks really promising though and I'll be there next time, if not before. Went out today without O2 for the first time. It was so good just to look around without all the background noise of the beast. Thank you all -and I mean ALL- for your help and support. Reading everyone's experiences, however rough, and learning from them, made it easier to cope. Amazing how the sharing empowers like that. The battle is to stop the beast defining us inasmuch as we can. Thanks Batch for keeping us all moving, Lance for his way with words, and Potter the Guinness Lover for making me laugh when I most needed to [smiley=me&mb.gif] X |
Title: Re: About time I said hello Post by wimsey1 on Mar 31st, 2011 at 7:26am
[smiley=clap2.gif]
This is why we're here. Great news and please do stick around to help others, and share with all of us your experience. One word of caution: you will get "used" to faster abort times, and pf days...don't let down your guard. The Beast is a tricksie thing it is. But you're stronger now and better prepared. Blessings. lance |
Title: Re: About time I said hello Post by Glassman on Apr 1st, 2011 at 12:11am
Great news, Numbnose! I hope you have a permanent remission. If not, then at least you're armed for the next round.
-Gary |
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