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JoeKen
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Cafeine as a Preventative?
« on: Sep 8th, 2005, 4:08pm » |
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Hi,
I am in the throws of the longest episode of CH that I have had. I am keeping it bearable by the use of both Imigran tablets and oxygen. I was reading a posting on another topic tonight and was surprised to see a reference to the use of cafeine as a preventative. Several months ago I decided to switch all my beverage consumption to the cafeine-free varieties. I am now wondering if the absence of cafeine from my diet has any connection to the longevity of the current episode.
I would welcome any feedback/comments/member's experiences on this aspect.
Nil illegitimum carborundum - (don't let the bastard grind you down).
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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Salvelinus
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Re: Cafeine as a Preventative?
« Reply #1 on: Sep 8th, 2005, 6:26pm » |
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Sounds plausible, but you should get other's opinions. I haven't tried caffeine very long. However, I have found that for me, it works great to abort shadows.
Remember that CH changes a lot. It keeps us guessing. PFDAN's to you! 
Namaste,
--Scott
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Namaste,
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BobG
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Re: Cafeine as a Preventative?
« Reply #2 on: Sep 8th, 2005, 11:24pm » |
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Don't know about using it as a preventative but many folks have said they use it as an abortive. There's some that make a strong pot before bed. Then all they have to do is stick it in the microwave.
Sure can't hurt to give it a try.
Probably work a lot better than tying and banana on your head No, never mind, that's another thread.
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JoeKen
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Re: Cafeine as a Preventative?
« Reply #3 on: Sep 9th, 2005, 3:27am » |
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Many thanks to those that replied. As it surely can't make things any worse I will try a shot of strong coffee at the first sign of the next hit. It is bound to be more pleasureable, and more dignified, than tying a banana, hot or cold, to my forehead. 
Thanks again,
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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marlinsfan
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Re: Cafeine as a Preventative?
« Reply #4 on: Sep 9th, 2005, 7:31am » |
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What I find is that if I drink it early enough, as soon as I feel the HA building, it will abort it 99% of the time. I make a strong cup, I mean strong, and then ice it down. That way I can chug it and drink it really fast. I also have cans of Starbucks Doubleshot - Espresso & Cream in my nightstand, office, travel bag, etc. Those work pretty well too.
My abortive line of defense is: 1) caffeine if I can get to it within 1-2 minutes of the HA starting, 2) oxygen if the caffeine didn't work within 5 minutes, or if I couldn't get to the caffeine, 3) imitrex if I don't have oxygen or coffee readily available (on the road, etc.), 4) bang my head against the wall if I have nothing.....
PF Wishes,
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catherinelane
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Re: Cafeine as a Preventative?
« Reply #5 on: Sep 9th, 2005, 7:54am » |
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find a few cans of red bull or other brands of energy drink helpfull they are packed out with caffiene !!!!!!
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marlinsfan
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Re: Cafeine as a Preventative?
« Reply #6 on: Sep 9th, 2005, 7:56am » |
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My problem with Red Bull, Mountain Dew, etc, is that they contain citric acid, and that is a trigger for me.
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LeLimey
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Re: Cafeine as a Preventative?
« Reply #7 on: Sep 9th, 2005, 8:15am » |
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Hi Joe,
One thing I noticed from your post is that your'e using imigran tablets? Is that right?
They take too long to work for Cluster headaches and aren't recommended at all. Have a word with your doctor about either the Imigran nasal sprays or injections. The injections are actually the only licensed form of treatment for CH in the UK. They come in an injection pen so aren't difficult to use and they only have to go just under the skin - so it really IS only a little prick! 
Honestly, speaking as one of the worlds greatest cowards they aren't difficult to use and given that you will get relief within 5-10 minutes it makes them even better!
As an alternative, if you prefer tablets, I'd suggest talking to your doc about frovatriptan. Alot of uk ch'ers are trying them as a preventative.. ie to ward off attacks. People have been having up to twelve hours PF with them so they could be worth a try for you.
If you want to ask more about that have a look at OUCH UK. You can post any questions on the sufferer support board there.
http://www.clusterheadaches.org.uk/cgi-bin/yabb/YaBB.pl
or ring the helpline. Its an answering machine so just leave your name and number and someone will call you back. The number is 0161 2721702
Hope this helps you a bit!
Helen
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LeLimey
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Re: Cafeine as a Preventative?
« Reply #8 on: Sep 9th, 2005, 8:16am » |
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on Sep 9th, 2005, 7:54am, catherinelane wrote:| find a few cans of red bull or other brands of energy drink helpfull they are packed out with caffiene !!!!!! |
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Hi Catherine!!
How are you getting on? I've been wondering how you have been doing!
Regards
Helen
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floridian
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Re: Cafeine as a Preventative?
« Reply #9 on: Sep 9th, 2005, 12:09pm » |
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Caffeine in the afternoon or evening will decrease melatonin overnight. Caffeine when getting hit can bring things down a notch. A double-edged sword in my opinion.
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JoeKen
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Re: Cafeine as a Preventative?
« Reply #10 on: Sep 9th, 2005, 12:20pm » |
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This reply is aimed mainly at LeLimey, but thanks also to all who responded.
My CH was diagnosed by a NHS Neuro after my GP and the ENT Consultant decide that my symptoms were outside their areas of expertise. I mention this because my symptoms do not fit the classical CH profile. My headaches are episodic, mainly affect the right hand side of my face behind the eye, down the side of my nose and cheek and lower rear jaw area. When the left side is affected, perhaps 5 to 10 percent of the attacks, the same areas on that side of the face are affected. (I also have suffered from ocassional migraine attacks all my life, but they are never one-sided and affect the area just behind the forehead).
So far this fits the classical CH profile I guess, but where my symptoms are unusual is that only very very rarely, and not since the initial episode around 5 years ago, does the HA come on suddenly, escalate rapidly up the KIP scale, and subside equally quickly. Now my typical attack starts with a slight indication, (shadow), which comes and goes over the first hour or so. This makes it difficult to react to promptly because sometimes this is all that happens, but it continues like this all day until I get to sleep at night. More normally the shadows develop into a 'proper' attack, at which time I start to take evasive action. This evasive action usually consists of taking half of a 12.5 mg tablet of Almotriptan and a 20 minute session with the oxygen. On it's own the Almotriptan will usually abort the HA in around 2 hours, but the oxygen will usually fade it to a shadow or below in 20 minutes and keep it there until the Almotriptan 'kicks in'.
Left untreated my usual KIP level is around 4, 5 or 6, but will last all day and sometimes through the night and into the next day. I can get these attacks every day for 3 or 4 days on the trot, and sometimes go up to a week without one, when ' in cycle'.
I mention all this detail so that you better understand my particular 'condition'. My problem is that my GP has already taken me off Sumatriptan and put me on Almotriptan to cut his costs. (this is why I have reduced my Almotriptan to half a tablet). I anticipate that, if I were to ask him for Imigran Nasal Spray, which I understand is significantly more expensive per dose, he may not be willing to prescribe it. This is after paying into the NHS for more than 50 years and, thankfully, not needing to take much advantage of my membership until the CH started around 5 years ago - God bless the NHS!!!.
Rather a long post, probably of very limited interest to most readers, but it gives an indication of another aspect of the beast that messes up so many lives. Compared with the suffering of many of the people who post here I know that I am extremely lucky having such a mild case - let's just hope that it doesn't get any worse.
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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Sandy_C
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Re: Cafeine as a Preventative?
« Reply #11 on: Sep 9th, 2005, 12:26pm » |
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My hits are usually in the evenings, beginning at 8:30, and going on until the wee hours of the morning. If I take Melatonin, I've found the overnight hits are reduced, sometimes no hit at all. But caffeine, even just a little bit, taken after 12:00 noon, gives me the heebie jeebies, and I do not get any sleep, in cycle or out of cycle. Like Floridian said, it's a double edged sword.
Sandy
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giffy76
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Re: Cafeine as a Preventative?
« Reply #12 on: Sep 9th, 2005, 12:35pm » |
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If you have not tried the Imigran Injections ask your doc. to prescribe it, they have been a life saver for me.
Cafeine worked for me a little when I first started to get these, but as I'm sure you know the beast adapts to some methods and they don't work anymore.
Good luck, prayers goin to ya
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catherinelane
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Re: Cafeine as a Preventative?
« Reply #13 on: Sep 9th, 2005, 1:32pm » |
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hi helen and all here i am feeling on top of the world my neuro is the greatest im on a tapering dose of steroids and only encountering small shadows now and as soon as i get a copy of the letter hes sent to that ass i call my doctor i will get my oxygen and imigran injections as wich you know was refused to me before, oh and i also have to be in a video hes making to educate docs on clusters,AND I HAVE TO GIVE UP SMOKING............. 
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LeLimey
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Re: Cafeine as a Preventative?
« Reply #14 on: Sep 9th, 2005, 1:37pm » |
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Oh Joe.. thank you so much for telling us all that because now we CAN help you!
I'm really pleased to be able to point you at this part of the OUCH UK site. (and you might want to show Dr Scrooge too!!)
http://gpinfo.ouchuk.org/
In particular I want you to look at the hospital doctor article from which I've taken this lovely quote for you
Quote:Subcutaneous sumatriptan (6mg) is the drug of choice in abortive treatment of a cluster attack. It has a rapid effect and high response rate. In CH, unlike migraine, subcutaneous sumatriptan can be prescribed at a frequency of twice daily, on a long-term basis if necessary, without risk of tachyphylaxis or rebound.
However, in this era of a cost-conscious NHS, some practitioners are reluctant to prescribe this relatively expensive drug. We feel that, given the devastating morbidity associated with this excruciating pain syndrome, it is unethical to withhold treatment for cost reasons. Although nasal sumatriptan is often used, it is considerably less efficacious than the subcutaneous formulation and there are no controlled studies to support its use.
Similarly, there is no evidence to support the use of oral sumatriptan in CH. Sumatriptan 100mg three times daily taken before an anticipated attack or at regular times does not prevent the attack and therefore should not be used for CH prophylaxis. |
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That was written by Professor Goadsby who incidentally wrote the same thing in the BNF! All the meds recommended for CH go through him first so anything written about CH in the BNF is by him.
Tell your doctor to check his BNF. (British National Formulary or doctors prescribing "bible"!) If he still won't prescribe them tell him you will be taking the matter up with your PCT as to why he will prescribe unlicensed meds instead of licensed. That should shift him!! 
This is something you can and will have the full weight of OUCH UK behind you on so I would urge you to contact them.
Oh.. and just 'cos I can't RESIST rattling on  .. I was wondering, do you have any preventatives such as verapamil or hasn't that been discussed within your treatment yet?
Keep fighting Joe.. we're all on your side with you!
Regards
Helen X
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LeLimey
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Re: Cafeine as a Preventative?
« Reply #15 on: Sep 9th, 2005, 1:42pm » |
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Oh Catherine thats terrific!
Its lovely to hear you sounding so upbeat! I've been keeping an eye out for you on the OUCH UK boards too!
Which reminds me.. the "rules" for O2 prescriptions are all changing from Jan/Feb so you'll need to be aware of that. Check your CHit CHat or the site for further details.
I'm really pleased as well that your neuro is looking into furthering education of CH, that can only be a good thing! Good luck with the quitting smoking too.. it will do your general health the world of good although I have to say it won't make a blind bit of difference to your CH.  I've never smoked in my life.. if only it were that simple huh?!
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BMoneeTheMoneeMan
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Re: Cafeine as a Preventative?
« Reply #16 on: Sep 9th, 2005, 1:48pm » |
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They say caffeine is a blood vessel constrictor.......so it may help the clusters. it is in some migraine meds.
Could that be the reason why so many get hit at night? cause any caffeine has been depleted from their system?
BMonee
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LeLimey
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Re: Cafeine as a Preventative?
« Reply #17 on: Sep 9th, 2005, 2:05pm » |
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The only theory regarding night time hhits that I know is that they are affected by rem cycles within your sleep.. generally they occur an hour to 90 mins after falling asleep or at such patterns through the night which falls in with the rem theory.
I have found a very cold high caffeine drink will help sometimes but not regularly enough for me to be able to be confident about it.
Its an interesting thought though, mind you.. caffeine at night would probably keep you awake so it's a no win situation really isn't it?!
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JoeKen
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Re: Cafeine as a Preventative?
« Reply #18 on: Sep 9th, 2005, 3:01pm » |
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Again this response is aimed mainly at LeLimey.
Thanks for your helpful and interesting response. In answer to your query about Verapamil, I do not take it at all and never have done. When the Neuro diagnosed CH he indicated that 2 alternative courses of treatment were available, namely tablets taken regularly to prevent attacks (Verapamil), or taking other tablets to abort an attack, (Imigran) - remember that this was 5 years ago. Because of the way that the NHS works, (I was told), the Neuro could make recommendations about what should be prescribed but the GP has the final say and writes the prescription. It was clear from the Neuro's comments that he thought that the abortive route was the way to go, principally because with Episodic attacks no one could be sure whether the episode had gone away of it's own volition or whether the Verapamil was responsible, and the only way to find out was to stop taking the Verapamil and see if the attacks resumed. The Neuro, the GP and I all thought that this was not the preferred option, hence no Verapamil.
The abortive worked reasonably well at 1 x 10 mg tablet of Sumatriptan at the first sign of an attack, but it usually took 1 hour to take effect - better than not taking the tablet but still 1 hour of CH.
The Neuro asked to see me again for a follow-up appointment after 6 months, during which time I discovered this site and read about oxygen as an abortive. I discussed this with the Neuro who confirmed that he had heard of it but could not vouch for it's efficacy. He nontheless agreed to include this on his report to my GP, saying that he, (the Neuro), had no objection to me trying oxygen. My GP's reaction, (a little less than enthusiastic), was that he was willing to prescribe a trial for me to assess it's effect, but commented that oxygen treatment was "not without it's risks". I was so happy to hear this that I did not ask him for clarification. Being an experienced SCUBA diver, the use of compressed gases, valves and masks held no concerns for me. Needless to say, the oxygen trial was a complete success once I had found a way of ensuring as little leakage as possible of air into the mask (I have a full face beard which I was reluctant to dispose of unless absolutely necessary), and my GP immediately put me on Repeat Prescription for both Imigran tablets and oxygen. When I expressed that I lived in fear that one day the relatively high cost of Sumatriptan would not allow the GP to maintain this course of treatment, he assured me that it was not going to happen - I was nearly suicidal before the Neuro diagnosed CH and I dare not contemplate life without an effective countermeasure - but who knows what future constraints may be placed upon his budget.
With regards to persuading the GP to read the article by Dr Goadsby and maybe report him to the local PCT, I just could not contemplate this. A couple of years ago I was very ill - didn't care whether I lived or died so long as the decision was reached very soon - and my GP really ' earn't his corn' by cutting through all the conflicting and misleading symptoms, correctly identifying and treating the problem, and then eliminating or other possibilities. In short he probably saved my life, or at least my quality of life. I would therefore be very reluctant to 'get heavy' with him over this, but I will raise the subject with him on my next visit, hopefully some months in the future.
Incidentally, if you succeed in staying with this posting up to this point, have any of you got any idea what might be behind the GP's comment that " oxygen is not without it's risks" - I always thought that it it was virtually harmless, other than it's possible effect on a house fire.
By the way, the shots of strong coffee seems to be working as an abortive, (but a one day trial is probably not conclusive !!), so I have just been down to the local supermarket and bought some Redbull - I'll give them a trial tomorrow, if/as required.
Thanks again to you all - if wishing you all PFDAN has any effect, then here's wishing you all PFDAN.
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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Kevin_M
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Re: Cafeine as a Preventative?
« Reply #19 on: Sep 9th, 2005, 3:30pm » |
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on Sep 8th, 2005, 4:08pm, JoeKen wrote:Hi,
I am in the throws of the longest episode of CH that I have had. I am keeping it bearable by the use of both Imigran tablets and oxygen. I was reading a posting on another topic tonight and was surprised to see a reference to the use of cafeine as a preventative. |
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I see here, with a long episode, you are now looking for a preventative.
Quote:| When the Neuro diagnosed CH he indicated that 2 alternative courses of treatment were available, namely tablets taken regularly to prevent attacks (Verapamil), or taking other tablets to abort an attack, (Imigran) - remember that this was 5 years ago. |
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Preventatives are a good idea. Using them with abortives sounds better than one alternative route or the other and appears to be what you are seeking now with the prolonged episode.
Glad the oxygen worked.
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LeLimey
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Re: Cafeine as a Preventative?
« Reply #20 on: Sep 9th, 2005, 3:32pm » |
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Regarding the O2.. its a vasoconstrictor when breathed in on its own (ie not part of the air) Hence its efficacy with CH. In CH the blood vessels in your brain expand to up to ten times their normal size which is why we talk vaso constrictors to reduce that. All triptans are vasoconstrictors as well hence the high risks attached to overdosing on triptans. They don't just constrict the vessels in your head but throughout your body so overdosing is very dangerous.
O2 if used for people who don't have Vasodilating headaches could therefore be quie dangerous and no doubt thats what your GP was getting at.
There is another triptan it might be worth your while looking at with your doctor. Its cheaper than imigran too. Frovatriptan is being trialled by quite a few people on OUCH UK at the moment for use as an abortive AND a preventative. The beauty of this triptan is that it has a half life of up to 12 hours which obviously is ALOT better than the 2-4 hours on imigran.
Zomig (zolmitritan) nasal sprays have a much better half life too and so would be a better option also for you. Both are cheaper than imigran too. I hope this helps but rest assured, we won't stop until we get you sorted!!
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LeLimey
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Re: Cafeine as a Preventative?
« Reply #21 on: Sep 9th, 2005, 3:37pm » |
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PS Joe.. I think its definitely time to talk preventatives with your gp/neuro but don't worry about it.. these are VERY cheap in comparison to the triptans!! LOL
Also for me, strong coffee (expresso) works better than red bull and red bull works better if icy cold.
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BMoneeTheMoneeMan
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Re: Cafeine as a Preventative?
« Reply #22 on: Sep 9th, 2005, 6:24pm » |
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If you take 6 to 9 mg of melatonin, and 50 mg benadryl, it should counteract the caffeine and overpower it. I drink cola all evening, but then crash hard when i take the cocktail.
BMonee
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LeLimey
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Re: Cafeine as a Preventative?
« Reply #23 on: Sep 9th, 2005, 6:29pm » |
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Thats a good tip BMonee.
Sadly for me and poor old Joe though melatonin isn't available in the UK. One of those daft conflicts where drugs that are considered dangerous in one country are OTC in the next. You have melatonin, We have solpadeine which you all know as Vicodin. Its an OTC drug here and you can buy as much of it as you want..
crazy world huh?
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BMoneeTheMoneeMan
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Re: Cafeine as a Preventative?
« Reply #24 on: Sep 9th, 2005, 7:56pm » |
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GET OUTTA HERE!! hydrocodone (vicodin) is sold OTC in the UK?
That is crazy. You cant even get a script for melatonin?
BMonee
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