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prcole18
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Another newbie from the UK
« on: Jul 27th, 2006, 4:59pm » |
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Hi, been suffering from Ch for the last 5 - 6 years. The first time I got one, I acctually called an Ambulance as I thought I was going to drop dead!
After a couple of years of hell I was finally refered to a headache specialist who put me on the Imigran Injections (wow where would I be without these now)! & prednisolone.
The Prednisolne do sometimes seem to keep them at bay but right now they are not doing a lot as im in the middle of one of my worst cycles ever (4 attacks in every 24 hours) so the doctor today has put me on verapamil.
I do not think ive had 30 days pain relief on the trot since these started, so would you say i'm a chronic??? This is what I would like to know.
Also Alcahol can set them off especially in the middle of a cycle, then again sometimes I can go out drinking, & it has no effect on the headaches.
I have tried everything in which to try & find the trigger, the one thing which I do think may have contributed if i'm honest is cocaine.
I used to use this reguarly at the time these started 5-6 years ago, I may be totally wrong but when I have done it since it seems to bring them on,maybe a coincidence.
I am mentioning the cocaine thing as I want to be honest & to see if any one else has had this, it is certainly someting I am not proud of.
I have not touched cocaine for over 2 years now, athough I still get the bloody headaches.
My doctor has been great & is currently subscribing me as many injections as I need (currently 3-4 a day)
& as I say just put me on Verapamil , hope this works as i'm currently only getting around 3 hours kip a night!
So would you say im a chronic, I always thought I wasn't but now I think I am.
Any help or advice on mainly preventive medication would be great.
many thanks
Paul
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LeLimey
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Re: Another newbie from the UK
« Reply #1 on: Jul 27th, 2006, 5:18pm » |
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Hi Paul,
Its nice to meet you even if it does have to be here. Lets see what we can do to help you now. You mention cycles and chronic so I'm confused. Do you get a cycle of a few weeks/ months with your hits peaking up and down during that or are you saying you have them continuously month in month out all year around?
Personally I think "chronic" is a very self defeating word and I don't like it at all!
How long are you on Pred at a time and at what dose? Do you taper on and off it? Tell us how you use it.
I don't think cocaine has had any effect on it to be honest, CH is generally thought to be caused by a faulty connection in your hypothalamus which is a tiny gland deep inside your brainw hich maintains amongst other things, your body clock. Its thought that this is why so many of us get hit at the same times of day.
Did you have an ECG before starting the verap and what dose are you on?
I know I want to know the in's and out's of everything but we need to know to be able to help!
Helen
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prcole18
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Re: Another newbie from the UK
« Reply #2 on: Jul 27th, 2006, 5:27pm » |
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ok, I generally get the headaches at least every week, usually 1 at night, sometimes I may go a few days without having one but thats about it. As I say right now im being hit at 2.00am, 4.30 am, 4pm & then at 9pm.
Im taking "12" 5mg Prednisolone for ten days the 6 tablets for four days then stop, but usually within a couple of days start agian as the headaches come back. At the minute the Predinisolone dont seem to be doing much at all as im being hit so much
The doctor has only put me on Verapamil today at 2X120mg a day, so at the precise moment ive only had 1 tablet!
Hope this helps
thanks for the reply
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LeLimey
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Re: Another newbie from the UK
« Reply #3 on: Jul 27th, 2006, 5:43pm » |
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Pred is usually used as a taper whilst something else kicks in such as verapamil. 60-80mg is a usual starting dose for a taper. You're starting on verapamil properly as you do need to build up on it. As with so many other of the drugs we use verap is "second hand" in that its primary use is for reducing blood pressure. As such you can't go straight in with killer doses! You need to ramp up and down on it or it WILL be injurious to your health.
Have you ever tried O2 as an abortive? I swear by it, its absolutely brilliant.
how many times a year are you using pred?
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prcole18
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Re: Another newbie from the UK
« Reply #4 on: Jul 27th, 2006, 5:48pm » |
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I have used 02 as an abortive, I think I did find some small relief but nothing compared to the Imighran injections which I now use.
I generally seem to be permantly on the pred, as I said before, as when I stop the headaches come back, this is when im getting them mildly though, ie one at night at the most, at the minute its different as im being hit so much.
So do you think the pred will work better withe the verapamil?
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LeLimey
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Re: Another newbie from the UK
« Reply #5 on: Jul 27th, 2006, 6:44pm » |
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Pred is a very dangerous drug. Its great for a taper every so often but I can't believe anyone is giving it to you practically permanently (Well, I can.. but you know what I mean!)
We have one girl here who has Avascular Necrosis from overuse of Pred, it can cause osteoporosis and I have steroid induced cateracts from it myself.. its only meant for very short term use so I'm gravely concerned about you being given it so much.
Obviously the more you use it the less it helps too.
What you need is to up the dose of verap. Peoples tolerances or needs rather vary dramatically, some people find relief on as little as 360mg whilst others go right up to 960mg and above. The mean seems to be around 480mg but as I said, you need to increase dose gradually and also have an ECG at every increase as it isn't a drug to mess about with.
When I use O2 I use a ClusterMasx Its a unique design and guarantees 100% oxygen with no air getting into the mix hence my being able to abort in 5-7 minutes. Thats even quicker than Imi so it might well be worth your while trying.
I feel horrible, I feel like I'm giving you horrible news or picking on you or something and that isn't my intention.. I really do just want to help!
Helen
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prcole18
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Re: Another newbie from the UK
« Reply #6 on: Jul 27th, 2006, 8:03pm » |
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Thanks Helen, I agree about the pred, to be honest it aint doin much so I think i'll lay off it a while, back to the doctors tuesday anyway.
Just woke up with another head ache, 1:am Uk, I'm getting through so many injections its unreal. might get some more oxygen on tuesday (havent had 02 for a few months) to try & cut down on the injections.
What I really need is a good preventive to start to work, fingers crossed for the Verapamil.
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tanner
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Re: Another newbie from the UK
« Reply #7 on: Jul 27th, 2006, 8:46pm » |
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Hi Paul, I am Tim. Not much to add to Helen's advice but I am usually on the general board ranting about one thing or another so I wanted to come over and say welcome.
I am now at 300mgs of verap twice a day. I used to be able to tolerate more but now when I try I get arrhythmia. I am not actually getting relief from the stuff but my bp goes so high during a major hit that I am afraid to back down.
You sound chronic to me but I am not one of the experts around. I know that I am as I have not had a totally PF day in over 3 years now and only one break since 1986. I too thought I was dying when my first one hit and I remember it like it was yesterday!
Well it is always good to meet another Brit  hope you stick around.................Tim
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prcole18
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Re: Another newbie from the UK
« Reply #8 on: Jul 27th, 2006, 9:58pm » |
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Cheers tim, yeah I think im chronic too. Just been reading about Taurine, may get some of that tomorrow as some people seem to be having some success with it as a preventive. I take it that would be ok to take with the Verapamil.
Was also reading about Melatonin but just realised its banned I think here in the UK 
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| « Last Edit: Jul 27th, 2006, 9:59pm by prcole18 » |
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LeLimey
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Re: Another newbie from the UK
« Reply #9 on: Jul 28th, 2006, 3:08am » |
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Paul melatonin isn't "banned".. its just not available! You can order it over the internet without any problem whatsoever - in fact Professor Goadsby is urging patients of his to do just that. Second guessing here but I have a feeling he would like to see how many people he can get to try it, see if they are benefitting and then maybe do a trial.. but thats MY thoughts.
A reliable website if you do want to order is www.vitacost.com I used them when I tried Kudzu and they were brilliant.
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prcole18
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Re: Another newbie from the UK
« Reply #10 on: Jul 28th, 2006, 4:01am » |
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Does anyone know if Taurine is ok to take with Varapamil, or should I ask my doctor before I go get some?
Also, Melotonin, do people use the time release one? there seems to be a few different ones doing the rounds?
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| « Last Edit: Jul 28th, 2006, 4:12am by prcole18 » |
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LeLimey
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Re: Another newbie from the UK
« Reply #11 on: Jul 28th, 2006, 4:13am » |
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http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Taurine
CAUTIONS
Taurine should not be taken if you are currently on a prescription for Verapamil or any other calcium channel blocker. Until more is learned, it is wise to assume that Taurine may increase the action of Verapamil, which could slow the heart excessively, causing irregular heart beats and possibly a heart attack. It is also not clear if Taurine would interact with other medicines like Sodium Valproate or Lithium.
Thats a really useful site btw Paul, its written by a sufferer here, Floridian who is extremely knowledgable.
I do know people here who use red bull and who are on veraamil so that might be an option for you.
Hope this helps
Helen
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LeLimey
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Re: Another newbie from the UK
« Reply #12 on: Jul 28th, 2006, 4:15am » |
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Sorry I've just seen your meatonin add.. people use a mix of both, Thomas, a regular poster here uses normal and slow release together so he gets the benefits of both, I can't remember how he does it but I'll ask him to come and let you know.
Helen
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prcole18
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Re: Another newbie from the UK
« Reply #13 on: Jul 28th, 2006, 4:21am » |
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Thanks again Helen, i'll leave the Taurine at the minute then.
I,m just currently having a total nightmare at the minute with these things. its 9:17am UK time & ive had 3 in the night, 1am 4:am & then another at 8am this morning, so ive used 3 injections, god your only supposed to have 2 in 24 hours.
Ive got the tablet form but basically they are crap! tried one again last week & was in so much pain I was nealy sick, so the injections are the only thing I touch as an abortive.
P.s no work for me today, tottally knackered.
Oh pps, tried the Redbull thing yesereday, did nothing for me.
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| « Last Edit: Jul 28th, 2006, 4:23am by prcole18 » |
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LeLimey
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Re: Another newbie from the UK
« Reply #14 on: Jul 28th, 2006, 4:30am » |
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Paul I have another suggestion for you - well two but think of it as a BOGOF!
Frovatriptan. It's another triptan and it IS a tablet so as such its no use whatsoever for a hit as the hit will be over before it kicks in. The usefulness of Frova comes as a preventative of sorts, if you take it two hours BEFORE a hit is due it will block it. So for arguments sake if you were due a hit at midnight and you took Frova at 9:30pm that next hit would be blocked. Frova will block for up to 24 hours AND you can still take two within 24 hours.
For some of us it can bite you on the bum if you use it too much though, more than 2-3 days on it has me getting hit harder and arder as they do come back but using it 2-3 times a week, to guarantee a nights sleep or a day PF is very useful. We all vary though and I know people who have used it daily for 5-6 weeks at a time with none of the harder hits I've had.
ClusterBusters speaks for itself. The only pain free time I've ever had, and I've tried all the preventatives except DHE.
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prcole18
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Re: Another newbie from the UK
« Reply #15 on: Jul 28th, 2006, 4:36am » |
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is Frova a prescription drug?
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LeLimey
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Re: Another newbie from the UK
« Reply #16 on: Jul 28th, 2006, 4:40am » |
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Yes its another triptan, same as Imigran etc so you can't use them wthin 24 hours of each other and you shouldn't use more than 2 in a day as you already know
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prcole18
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Re: Another newbie from the UK
« Reply #17 on: Jul 28th, 2006, 4:48am » |
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Ok. I dont really want to go back to the doctors today, been there twice this week already & got an appintment this coming tuesday.
Is there anything you would recommend I could do to try & have a reasonable weekend & also that may enable me to cut down on the amount of injections i'm using.
Sorry if im beinmg a pain in the backside, I just havent had a decent nights sleep all week
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LeLimey
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Re: Another newbie from the UK
« Reply #18 on: Jul 28th, 2006, 4:51am » |
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Paul I can sympathise completely with the no sleep thing. All of us can hon, the trouble is there is NOTHING you can buy OTC that is going to give you any pain free time whatsoever.
Could you try ringing the surgery and asking if they'll give you Frova over the phone so you just have to pick up a prescription? It's a long shot but given that you are already on Imigran it might be allowed.
All I want is you to get some PF time too, I'm so concious that today is Friday and you're facing the weekend with nothing thats much use to you 
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prcole18
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Re: Another newbie from the UK
« Reply #19 on: Jul 28th, 2006, 5:02am » |
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thing is with frova, as im using imigran (quite a lot) I suppose id have to wait 24 hours after the last i njection (if I can go that long) untill I take it, would that be correct?
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LeLimey
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Re: Another newbie from the UK
« Reply #20 on: Jul 28th, 2006, 5:10am » |
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Technically yes. In practise its up to you. People on this site believe firmly in the 24 hour rule between triptans but I know several who do mix, I was also at the National Conference in the UK last year when Professor Goadsby stated that he didn't think it mattered provided you didn't exceed the stated dose of 2-24 hours regardless of what triptan you used. Not two of each type in 24 hours mind!
The guidelines exist to protect the drug companies first and foremost.. you've already said you have used more than the stated dose within a 24 hour period and you're still here. It isn't "advised".. but there you go!
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thomas
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Re: Another newbie from the UK
« Reply #21 on: Jul 28th, 2006, 8:46am » |
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My CH treatment
20min HOT steamy shower 1 hour before bed
3-6 mg of melatonin and 2-6 mg of time-release melatonin afterwards
Go to bed
Wake up in the morning; take 500 mg of magnesium and 20 mg of fluoxetine (prozac)
Abort with zomig and O2 at 15 LPM as needed.
Also had some good results from alternative methods, but nothing too concrete to rave about yet.
You may have to adjust the dosage around to find what works for you, I have to adjust it almost nightly, what works one night, may not be as effective the next, sometimes I need more, sometimes less. But I find if I don't use the time release, I get hit after about 4-5 hours after I go to sleep, but combining the two gives my about a 75% chance of getting through the night with no attacks. Cheers mate.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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prcole18
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Re: Another newbie from the UK
« Reply #22 on: Jul 28th, 2006, 10:55am » |
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Can you take magnesium when taking verapamil?
Also does anyone find that magnesium gives you some pain relief?
If so im going to shoot out to buy some!
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| « Last Edit: Jul 28th, 2006, 11:04am by prcole18 » |
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prcole18
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Re: Another newbie from the UK
« Reply #23 on: Jul 28th, 2006, 12:42pm » |
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Just been out & bought magnesium. taken 1 X 250mg & we'll probably take another before bed. recommended daily dose says 1 X 250mg but everyone seems to take more than that!
Im due another hit at about 8 or 9pm, fingers crossed!
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| « Last Edit: Jul 28th, 2006, 12:43pm by prcole18 » |
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