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Cluster Headache Help and Support >> Getting to Know Ya >> Hello from a chronic sufferer in the UK. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1288751010 Message started by topiramates on Nov 2nd, 2010 at 10:23pm |
Title: Hello from a chronic sufferer in the UK. Post by topiramates on Nov 2nd, 2010 at 10:23pm
Hello,
My name is Guy. I live in the south of England, and I've been a chronic sufferer now for 5 years. I haven't had one 'day off' for all that time and it's now really testing me. I belong to OUCH.UK who are wonderful, and a couple of other smaller sites. I thought I'd give this site a go as it looks very well maintained and presented. I have my attacks in the early hours, not long to go infact. I can never sleep before them, and have never been able to. I sit and things happen as they would if I was sound asleep. I've tried dozens of drugs over the years but nothing really seems to help. I've even been fortunate enough to have had the ONSI op, but even that hasn't made a huge difference. I was told however, that it can take time to function properly. But it's been just over 12 months since the op, how long do I have to wait. I really am at my wits end and I'm struggling to keep my head together. I've done so well over the years, always try and smile and get on with things, but now I'm finding it harder and harder to deal with. The pain just gets worse, I've constantly got a bruised forehead and would do anything just to sleep well for several hours at once. I have had attacks during the day as well, but these are not always regular. I take my Imigran injections, all my meds, oxygen and of course use my remote for my internal system. You'd think with all that something would give just to make life a little easier. I have no life at all, I can't work and don't socialize. Believe me, if I could I would. I don't receive any benefits because the system here is a joke. It's not recognized! As soon as you mention the word 'headache', people seem to think you get a little bit of pain like a hangover or something. I always use the medical terms (the long words) that seems to help. I don't drink or smoke and eat healthly. There is nothing more I can do to try and slow things down or reduce the pain but nothing is working. I think the main reason I've posted this on the forum is really to try one last attemp and see if anybody out there has any ideas as to what I can do, without doing the almost inevitable. I've lost three friends during my time as a sufferer who were also sufferers and I've seen first hand what it does to their families etc... but sometimes I also think just how lucky (you know what I mean) they are because they are not suffering every single day non stop, year after year. I have some wonderful people helping me in terms of neurosurgeons etc.. but sometimes it's just not enough. I'm coming up to my 6th year as a chronic sufferer, that's over 2,000 days. 2,000 days without a break. How am I meant to go on? I'm sorry my first post here is so negative, but I just get see any relief ahead and I'm scared as to what I might do. I've never felt this depressed before, even after all these years, but now it's really getting to me. If anybody here has any suggestions I'd be so grateful. And if anybody from the UK reads this, then perhaps we could meet up if you're near the south coast? Thank you for letting me air my problems, and lets hope that one day we all get better. Regards Guy. |
Title: Re: Hello from a chronic sufferer in the UK. Post by bejeeber on Nov 2nd, 2010 at 11:53pm
Also, just to be sure, have you tried the power user approach to oxygen for aborting attacks, where you hyperventilate 100% O2 at a high flow rate, such as 25 LPM or above as outlined in the oxygen info link to the left?
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Title: Re: Hello from a chronic sufferer in the UK. Post by mindset on Nov 3rd, 2010 at 12:33am
Hi Guy!
Being Chronic sucks - I am too. I was episodic for years but turned chronic 8 years ago. I started using 02 about 11 years ago. Have you tried it? I've been getting slammed since 2 am in the morning. It's been one long hellish day! |
Title: Re: Hello from a chronic sufferer in the UK. Post by Ginger S. on Nov 3rd, 2010 at 6:42am
Hi Guy I'm sorry you have been having such a rough time, being chronic SUCKS I know.
Since CH is not recognized by the benefits health community there a more publicized approach may help if you are up to it. Call or write to any local TV or Radio station that has a talk show, this would give you something to do and could possibly benefit yourself and others. Contact your local news/tv station and see if you can speak to a reporter about CH and what you go through and the fact that it is not covered under the benefits. Offer (here's where the "If you are up to it" part comes in) to let them follow you around your day or week filled with CH Hell! With enough publicity you may be able to make a change with the benefits for yourself and others who suffer. Contact any Gov. officials you can, write them letters and explain what CH is really like and how debilitating it can be and has been for you. I know not much of what I've said is helpful right now but if you use your PF time (what little of it there is) working towards making things better for yourself and others, it will give you something to keep going for aside from just looking forward to the next battle with the CH Beast. Make sure you check out Clusterbusters as bejeeber said, there maybe something there that will help. It really is a shame when you think about it that we CH sufferers have to go as far as these methods to get relief. Hopefully one day soon this will all change for the better. Sending PF Vibes your way!! |
Title: Re: Hello from a chronic sufferer in the UK. Post by wimsey1 on Nov 3rd, 2010 at 8:07am
You've been given great advice, Guy. I notice you don't list the preventatives you've tried, or their doses. And you may not have had time yet to respond concernig the O2 link. I can only encourage you to make a list of everything we have tried here and share with others. Often we find those who have neuros not in the know concerning CHs that they are not taking high enough doses for relief. Or dread the verapamil/lithium combo that has worked so well for some. There is hope. We need a little more info though. If you care to share, that is. In the meantime, you are in my prayers as are all sufferers in this fellowship of pain. Pax and blessings! lance
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Title: Re: Hello from a chronic sufferer in the UK. Post by Lauren17 on Nov 3rd, 2010 at 9:46am
Welcome Guy.
Let us and our lovely sister site work as hard as we can for you- we are here to help. I know you're exhausted, and I also know that you have probably posted this information on multiple other sites, but can you give us a rundown of your doses and medications, past and present? Give us the ball and let us run with it- we WILL work to help you, that I promise. I am a supporter, and the following quote (that I reference in my tagline) helped me in the desperate, tooth and nail fight to find my husband relief. It perfectly summed up how I felt during those desperate times: "Never give in. Never give in. Never, never, never, never--in nothing, great or small, large or petty--never give in, except to convictions of honor and good sense. Never yield to force. Never yield to the apparently overwhelming might of the enemy." Seems presumptious for a Yank to be quoted Churchill to you, not gonna lie, but it helped me so I thought I'd put it out there. And help came. And relief came, both physical and mental. New research is going on all the time, here, on this site. There is a PH diet and formula that has helped the effectiveness of other medications. Specific techniques on oxygen usage, and our sister site's techniques. Kudzu, Melatonin, etc. There is so much out there left for you to try, and new things to try popping up every day, would be a shame to miss out on something that can help because you made a final decision. I'm so very glad you reached out to us, hang on, and let us fight for you and with you. Lauren Bonkers, that might be one of the most powerful posts I've read. You are a good father, my friend. |
Title: Re: Hello from a chronic sufferer in the UK. Post by Lee_Ann on Nov 3rd, 2010 at 10:24am
Hi Guy,
I am the wife of a 7 year Chronic Cluster Sufferer. He has tried every drug available for CH. He had the ONSi in April this year. That was HIS last hope. It didn't work. I had been reading about Clusterbusters for years. After the ONSi failed, he was ready to check out for good. I persuaded him to try the Clusterbuster approach. It is the only thing that has provided him with sustained relief and no side effects. O2 is also a MUST try. There are lots of other things to try too as mentioned. Don't give up. There is hope. :) Lee Ann |
Title: Re: Hello from a chronic sufferer in the UK. Post by topiramates on Nov 3rd, 2010 at 11:08am
I don't know what to say to you all. Thank you so much for the lovely welcome and caring thoughts. It does make such a difference knowing there are people out there who suffer the same as myself, it's a shame, but it's good to know.
I am on O2 and have been for a few years, using the maximum amount of 15.lpm. I have a couple of big cylinders at home and always carry a portable with me. I have also tried verap, lithium, melatonin, steroids, topiramate, amitriptyline, sodium valproate, and many many more, most of which I can't even remember. I know that I've been on 960mg of verap, but I'm afraid I would be making doses up if I tried to think back. I'm sure I could get that info from my neuro. I've also done the mixing of drugs. The verap and lithium did me no favours at all and apparently I was like a zombie possessed. I know that you are all trying to help and I really appreciate it very much. It just seems that I'm being so negative all the time, but how can't I be? I am a very strong person mentally and have always had the fight in me to try and beat this thing, but it's only lately that things are just becoming too much. Only when I read your posts does it hit home how we all suffer from this. Some of you are carers, parents with suffering children, and people like myself. I think that we are all so strong to deal with this demon and should all get a pat on the back for dealing with such an illness the way we do. With regards to the benefits etc, I have been in local press and I've even been to the House Of Commons. I've nagged my MP for the last couple of years (and still do to this day) but even doing all that, and more, nothing. Maybe one day. Bejeeber, mindset, Ginger S, Bonkers, Wimsey 1, Lauren 17 and Lee Ann, thank you. And if anybody else should be kind enough to reply, thank you as well. I'll take everything you've said on board, and will no doubt be in touch again. Guy. |
Title: Re: Hello from a chronic sufferer in the UK. Post by mindset on Nov 3rd, 2010 at 11:17am
Just thinking about you and hoping things are better for you today. I hope you received my PM from earlier.
You're desperation is hauntingly familiar. You are so right, this isn't just about the physical pain, its also about the depression, the anxiety, and the frustration. I was also completely hopeless - multiple meds I've tried throughout the years would sometimes taper the pain, but CH's always came back with a vengeance. It seemed like I never slept. I was getting 12+ CH's daily from Kip 8-10. The time I had in between hits were plagued by chronic migraines and tension headaches. I felt like I was going crazy. I couldn't think, I couldn't even function. I lost my employment. I have such guilt over the time and events I've missed out on throughout my children's life. There was a time period last year when I literally didn't leave my house for 3 weeks. Thoughts of a permenant end became more and more frequent. But, fortunately, someone reached out to me with information from clusterbusters. Initially, it was a scary road, but I'm now using alternative treatments and having marked successes. I have hope now. Yesterday happened to be a bad day for me, but sometimes I now have 2 -3 PF days a week. Unbelievable! My migraines have dramatically lessened, too. I'm in a much, much better spot mentally. If you decide alternative treatment is something you need to try, you will find much support and inspiration from others who have walked in our same desperate path. Take care. |
Title: Re: Hello from a chronic sufferer in the UK. Post by Lauren17 on Nov 3rd, 2010 at 11:26am
Have you tried Melatonin? It made a world of difference for my husband. (Time to get down to specifics, my friend!)
Let's go through these options one by one! As to the regulator- can you get a welding regulator? Flow rates are higher with those- that is what my husband uses, 15 is considered a minimum, more success has been had with higher. Also, are you using a non rebreathing mask? And taurine- have you tried taking an energy drink with taurine (Red Bull, Rock Star, 5 hour Energy, etc) at the FIRST twinge of a headache? Some even combine this with the start of oxygen theraphy with good results (huff huff, sip sip, huff huff kind of thing...) Don't worry about your first post being negative- all of our first posts were, I dare say! We came in pain, fear, and desperation and stay to learn and help. |
Title: Re: Hello from a chronic sufferer in the UK. Post by bejeeber on Nov 3rd, 2010 at 12:20pm
Hi Guy, if you find that the 15 LPM isn't always working for you, well many, many of us find that 15 LPM just isn't enough. It certainly isn't for me - at my last peak cycle I was hyperventilating at 45 LPM (!) with a non rebreather mask with large reservoir bag (and that worked). There are hi flow regulators available for purchase online, and that's how I got mine.
A demand valve system could simplify the whole thing and could be worth looking into. There's an O2 guru (and chronic CH'er) here by the name of Batch who, (last time I checked) with the help of PH optimization and hyperventilation, is known to knock down all of his hits in minutes this way, and appears to have a life that is minimally impacted by CH. I imagine that at 15 LPM he would be royally screwed. If the hi flow 100% O2 used as an abortive would be more effective for you and could allow you to detox off some or all of the meds, that could in turn help optimize the effectiveness of clusterbusting as a preventative. I'm sure we'd all love to see you join the ranks of the former chronics who can now go a pain free week or even much longer without having to touch a medicine, herb, or even O2. :) |
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