avrild Posted December 14, 2012 Share Posted December 14, 2012 hi i am new to this site but not new to ch have suffered with them for over 20 years and am in a bout of them now ..... have being going on the last 9 weeks and at this stage iam so tired physical and emotionally :'( i take topamax, lustral, imigran sumatriptan injections i also have 02 and about 4 weeks ago i had a occipital nerve block done but nothing has stopped them this time :-[ i am back in the hospital tomorrow for another occipital nerve block so fingers crossed it works so my heart goes out to anyone who suffers with these ch unless you have them you have no idea of the pain and suffering they cause but i have a great family who are always there for me as much as they can and i have recently got together with my partner and he has being a great support !!!! :-* hope to catch up with you all and will let you know how i get on tomorrow here is hoping it will break this cycle !!!!!! :-/ Quote Link to comment Share on other sites More sharing options...
jackieblue Posted December 14, 2012 Share Posted December 14, 2012 Hang in there, Avrild. You are in the right place. I am in my 7th week and know the frustration and exhaustion. The best decision I made 2 cycles ago, in my 15th week, was to dump all meds. I was out of control and hopeless. Nothing worked except O2. Since using the busting method here, I am in a much better place. I was right where you are. I can't shake this cycle totally, but I know that my hits now will only come at night and I do get strings of days pain free. I am tired during the day but am totally functional. The meds lengthened the cycle and made the headaches come at all unexpected times of the day. Almost did nerve block. I know how hard you are trying to find relief. Take a look at this site for ideas and stories that might help you. There are many great people here for you who totally understand. Ask lots of questions. Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 14, 2012 Share Posted December 14, 2012 Jackie said it all very well, Avrild. Plenty of people here who can help. I have the sense that you are in Europe (since Lustral is called Zoloft in the US)? How is your O2 working for you? Some folks have found that relatively small improvements can make a big difference. One simple thing is to drink an "energy drink" (RedBull, Monster, etc.) just before you start on the O2. For a lot of people, that can make a significant difference in how quickly the O2 works. Other people here have found that the mask that is made specifically for people with CH -- the O2ptimask -- helps them abort much more quickly with O2. There are some other ideas, too, which we can get to if you are interested. Quote Link to comment Share on other sites More sharing options...
avrild Posted December 14, 2012 Author Share Posted December 14, 2012 thank you both for you kind words :)was up again this morning with a bad one just getting ready now to go and have the nerve block done so as i said fingers crossed :-/ i live in ireland and use a non rebreather mask with my o2 and didn't know there was other ones so any info is great help !!!!! will let you know how i get on thanks again Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 14, 2012 Share Posted December 14, 2012 Fingers crossed! Here is the place where you can get this mask: http://www.clusterheadaches.com/khxc/. Many people with CH find that they abort attacks much more quickly and effectively using it. In addition, many find that using higher flow rates than what is typically prescribed also helps get a quicker abort. Guessing that your regulator goes up to 12 or 15 litres per minute; many people now use 25 or more lpm. In many places, one can buy a higher-lpm regulator and attach it to your oxygen tank, but I do remember that in some places in the UK the regulator is built-in to the tank and can't be changed. In that case, there are still some things you can do. Let us know if you are interested--and don't forget about the energy drinks! (Coffee works, too, but for most people not as well as the energy drinks.) For now, we all will hope, with fingers crossed, for success with your procedure today. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted December 14, 2012 Share Posted December 14, 2012 Hi Avril, fingers vigorously crossed here too for a successful nerve block today. So glad to see our voonderbar JackieB and CHfather have greeted you with some great info right off the bat. Many many CH'ers here (including myself) have found busting to be significantly more effective at preventing CH than any drug. So I'm thinking there's a very good chance it could help you too. Quote Link to comment Share on other sites More sharing options...
avrild Posted December 14, 2012 Author Share Posted December 14, 2012 hi all well had the block so only time will tell !!!!!! ye my 02 tank only allows 15lpm and the regulator is built in so any other advice would be great.will try the drinks something i didn't know about but to be honest when i wake with the pain not sure if i would be able to hold down a drink lol and just to ask what is busting you all talk about i have never heard of it :-? thanks again for the info and support [smiley=dankk2.gif] Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 14, 2012 Share Posted December 14, 2012 In short, Avrild, "busting" is using psychedelic drugs to end CH cycles and even prevent recurrence of cycles. The drugs are taken at low levels that induce no psychedelic effects, or generally low levels of psychedelic effects. These drugs have been shown in many studies to work against CH. Some people use psilocybin mushrooms, some use LSD, and many use seeds that are very easily converted to LSA, which is a form of LSD. In most countries, the seeds are legal to buy and possess and are converted to LSA very simply, by grinding them and soaking them in water. Drinking the mixture that results is against the law in most countries. The seeds usually work quite effectively with no psychedelic effects at all, and they are very inexpensive. I would say that most people here would say that if these drugs were legal they would be the #1 prescription (along with oxygen) for CH, since they are effective and they have no side effects for most people. Unlike oxygen, they are not used to treat individual attacks but to end cycles and often prevent cycles. Most people here have been on the types of drugs you are taking (and many others) and have found that they prefer busting. You can read about many aspects of busting in the "ClusterBuster Files" section of this board. You cannot bust while you are using many of the medications you are taking, particularly the triptan. A "detox" from those meds of five days is strongly suggested. Here's the basic file from the ClusterBuster files section: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 There are many others there that we can refer you to if you are interested in busting. You might also consider the completely legal, relatively inexpensive "vitamin D3" approach that has helped a lot of people reduce the severity of their attacks, end cycles, and perhaps prevent future cycles. You can read about that here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Regarding your O2, a lot depends on how effective it is for you now. Many people find that the bag attached to the mask doesn't fill up fast enough at 15 lpm to allow them to really inhale deeply and frequently. In addition to some other features, the O2ptimask that I have mentioned has a larger reservoir bag. You can also take the reservoir bag off your mask and replace it with an unscented trash bag or turkey bag, which will give you more capacity. The idea is, as I say, to breathe very deeply and somewhat rapidly. Some people even "hyperventilate" to push as much stale air out of their lungs as possible and get in enough pure O2 so that it works faster. Quote Link to comment Share on other sites More sharing options...
avrild Posted December 14, 2012 Author Share Posted December 14, 2012 thanks for the info will have a look at the links !!!! [smiley=dankk2.gif] [smiley=dankk2.gif] Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted December 15, 2012 Share Posted December 15, 2012 when i wake with the pain not sure if i would be able to hold down a drink lol Understood. If one of the little concentrated energy shots would be easier to hold down, those have been known to work too. At least they only require one short swig before you're on the O2. 8-) Quote Link to comment Share on other sites More sharing options...
avrild Posted December 15, 2012 Author Share Posted December 15, 2012 good morning friends well first pain free night in weeks happy days xxx site of injection and neck very sore and stiff but a small price to pay for a pain free sleep lol anyway i know its very very early days but its so good to have a good nights sleep thanks for the tip on the drink shots good tip think they would be easier to handle they have upped my dose of topamax as well not to sure if i am happy with that but we will see how things go chat soon [smiley=happy.gif] Quote Link to comment Share on other sites More sharing options...
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