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Cluster Headache Help and Support >> Getting to Know Ya >> New Member http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1467892411 Message started by Soracleas on Jul 7th, 2016 at 7:53am |
Title: New Member Post by Soracleas on Jul 7th, 2016 at 7:53am
I first got CH 5 years ago, the first time was for 3 weeks, 2 years later in the same month, August I got them for 3 weeks again and would have 2 one day and then one day off and this would then repeat. This is my third bout and strangley after 3 years and not 2 as everything I've read and noticed from my own experiance is just how cyclical everthing is. All 3 is when the weather has been really stormy at the start with realy high pressure. This time they are 3 times a day. They started between 8-10 AM, 2-4pm and 10-12PM but after I've changed from Rizatriptan to oxygen they have changed after the first 7 or 8 days to midnight, 4am, 9am. After day 3 I also started taking topiramate 25grams once daily and I think this in conjunction with the oxygen may have changed the sequence because I have actually missed 2 or 3 over the last few days. Wahoo!! Rizatriptan has worked in the past but the 30 mins it takes for them to kick in is absolutly horrendous, it's hard to decribe the pain to people, it is that intense but obviosuly im in the right place with this sight. To me, it feels like a drill boring in to my left temple and I'll do anything to try and distract me from the pain even if it's for a milisecond. Ice, water, shower, pacing etc etc. The last 2 times I've just got on and dealt with it as although it was awful when in the throws of one it was at the max twice over 2 days as this one is every day, 3 times a day. I had to take 18 Rizatriptan tablets over the first 7 days and the advised limit is 6 so that wasn't great and they started losing there effectiveness and I belive can cause rebound headaches.
I am very aware of how 'lucky' I am in CH sense because I know the amount I get them daily and the remission periods I have must seem like a dream for most sufferers as most of the reading I've done suggests 20% are chronic? and the majority 3 x a year of a month each time? I know it varies but I was going on averages. My thoughts seriously go to you all and hope that with help it gets to be the best that it can possibly be! Sorry for the rant but just wanted to get everything down. Questions.... Rizatriptan isn't a common treatment for CH, it's more for migraines, why was I given this? does / has it worked for other sufferers? Im In the UK have never been offered Sumitriptan injections or the nasal spray, any reasons for this and how effective are these? The oxygen is quick working, about 8 mins but often it doesn't completly get rid of that bout and I'll have to go back to it twice or maybe 3 times. Is this normal? DO other people have the same thing? How long can you take the oxygen for safely? I usually keep it on for 20 mins and then say after an hour it might come back so I have another 20 mins and then it repeats again. I don't get any side effects from CH that a lot of people reference, bloody eyes etc, runny nose etc. Is that common? The only thing I maybe have and this is from my 2 bout and not this lot is it used to be quite painful to breath up one of my nostrils but unsure if this is related. Do a lot of people use Topiramate? I really feel like it's working as somethings changed my 'clock' and I've missed quite a few now as previosly mentioned. I'm not sure if this is the best place for my thoughts and all these questions but the doctor I've seen this time and ever since I've been diagnosed have know less than nothing! Any help would be greatly appreciated!! Lee |
Title: Re: New Member Post by maz on Jul 7th, 2016 at 6:07pm
Hi Lee
I'm in the UK too - about 5 miles north of Portsmouth. I can answer a few of your questions. Topiramate is a fairly common preventative. However the favourite among us which seems to be the most effective is verapamil. I don't know the dosage as I don't take it, but I believe it needs to be fairly high. As far as abortives go, I can tell you that sumatriptan injections are fantastic. They will kill off the worst attack in 5 - 10 minutes for most people. The nazal spray is next best, but the pills are pretty useless because the take too long to get into your system. Do what I did and ask your doctor for them. The reason you have not been offered them is probably because they are expensive and your doctor is no doubt thinking of his budget,or possibly he just doesn't know, but you should keep on at him unless of course there is some medical reason why you should not use them. It's the most widely accepted abortive there is. I had to find out about them for myself and ask for them. The trick with oxygen is to get on it at the very first sign of an attack. If you can catch it quick enough - when you feel the very first tingle of an attack, it's possible to head it off completely. If it takes 10 minutes for the attack to stop, then stay on it for another 10 afterwards. You can take as much 02 as you want with no adverse effects. You may hyperventilate which feels a bit like pins and needles, and prickles all over your skin, but that is in fact what you are aiming for, and what makes the CH go away. The prickly feeling soon wears off afterwards. Are you using it correctly - 15 litres per minute with a non re-breather mask. If you get the flow rate wrong, or the wrong mask it won't be effective. You are right about the GPs lack of knowledge. One of them told me that they get no training in headache disorders at all, other than migraine, and not much of that. He kept me for ages asking questions and writing everything down. And another said I knew more about it than she did. I've trained three of 'em now ;D Hope this helps a little. As you are in the UK, send me a PM if you want to talk and I'll give you my phone number. Maz. |
Title: Re: New Member Post by Batch on Jul 7th, 2016 at 9:13pm
Hey Lee,
Welcome to CH.com. You've come to the right place. Contact with fellow CHers is very important as it lets you know you're not alone with this painful and debilitating disorder. Stay with us and you won't be sorry. There's lots to learn about how to manage your CH. I've sent you a PM so check your PM InBox. It's located under the date in the upper left corner of this page. It should say you have 1 new message. If you click on the bold green font it will take you to your PM InBox. Take care and please keep us posted. V/R, Batch |
Title: Re: New Member Post by Soracleas on Jul 10th, 2016 at 5:45am
Thanks for this!
I will ask for the injenction pens next time for sure! Yeah, the D3 definately looks like its worth a try. Lee |
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