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Title: Cafeine as a Preventative? Post by JoeKen on Sep 8th, 2005, 4:08pm 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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Title: Re: Cafeine as a Preventative? Post by Salvelinus on Sep 8th, 2005, 6:26pm 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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Title: Re: Cafeine as a Preventative? Post by BobG on Sep 8th, 2005, 11:24pm 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. |
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Title: Re: Cafeine as a Preventative? Post by JoeKen on Sep 9th, 2005, 3:27am :) 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. [smiley=laugh.gif] Thanks again, JoeKen. :) |
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Title: Re: Cafeine as a Preventative? Post by marlinsfan on Sep 9th, 2005, 7:31am 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, .... and go Fish! 1/2 game out of the wildcard race! |
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Title: Re: Cafeine as a Preventative? Post by catherinelane on Sep 9th, 2005, 7:54am find a few cans of red bull or other brands of energy drink helpfull they are packed out with caffiene !!!!!! |
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Title: Re: Cafeine as a Preventative? Post by marlinsfan on Sep 9th, 2005, 7:56am 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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Title: Re: Cafeine as a Preventative? Post by LeLimey on Sep 9th, 2005, 8:15am 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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Title: Re: Cafeine as a Preventative? Post by LeLimey on Sep 9th, 2005, 8:16am on 09/09/05 at 07:54:18, catherinelane wrote:
Hi Catherine!! How are you getting on? I've been wondering how you have been doing! Regards Helen |
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Title: Re: Cafeine as a Preventative? Post by floridian on Sep 9th, 2005, 12:09pm 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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Title: Re: Cafeine as a Preventative? Post by JoeKen on Sep 9th, 2005, 12:20pm 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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Title: Re: Cafeine as a Preventative? Post by Sandy_C on Sep 9th, 2005, 12:26pm 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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Title: Re: Cafeine as a Preventative? Post by giffy76 on Sep 9th, 2005, 12:35pm 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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Title: Re: Cafeine as a Preventative? Post by catherinelane on Sep 9th, 2005, 1:32pm 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............. :-X |
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Title: Re: Cafeine as a Preventative? Post by LeLimey on Sep 9th, 2005, 1:37pm 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:
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!! ;;D 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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Title: Re: Cafeine as a Preventative? Post by LeLimey on Sep 9th, 2005, 1:42pm 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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Title: Re: Cafeine as a Preventative? Post by BMoneeTheMoneeMan on Sep 9th, 2005, 1:48pm 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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Title: Re: Cafeine as a Preventative? Post by LeLimey on Sep 9th, 2005, 2:05pm 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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Title: Re: Cafeine as a Preventative? Post by JoeKen on Sep 9th, 2005, 3:01pm 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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Title: Re: Cafeine as a Preventative? Post by Kevin_M on Sep 9th, 2005, 3:30pm on 09/08/05 at 16:08:29, JoeKen wrote:
I see here, with a long episode, you are now looking for a preventative. Quote:
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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Title: Re: Cafeine as a Preventative? Post by LeLimey on Sep 9th, 2005, 3:32pm 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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Title: Re: Cafeine as a Preventative? Post by LeLimey on Sep 9th, 2005, 3:37pm 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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Title: Re: Cafeine as a Preventative? Post by BMoneeTheMoneeMan on Sep 9th, 2005, 6:24pm 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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Title: Re: Cafeine as a Preventative? Post by LeLimey on Sep 9th, 2005, 6:29pm 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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Title: Re: Cafeine as a Preventative? Post by BMoneeTheMoneeMan on Sep 9th, 2005, 7:56pm 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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Title: Re: Cafeine as a Preventative? Post by JoeKen on Sep 10th, 2005, 3:24am :) Hi All, though again this is aimed mainly at LeLimey, Thanks very much for your informative replies, your concern and your determination to "get me sorted" - the world is full of nice people, it's just a pity that this fact isn't so apparent in normal day to day life as it used to be, or is my failing memory misleading me again? I can now see what my GP meant when he referred to the risks associated with oxygen, thanks to you. Why is this fact not more widely publicised on sites like this or OUCH UK, or is my failing memory letting me down again? I do recall reading somewhere on one of these sites about taking oxygen to abort a night time attack which wakes you. The possibility of falling back to sleep whilst still inhaling 100% oxygen was mentioned but I do not recall any concern being expressed about the potential danger of this happening, hence my belief that it was virtually harmless. Thanks also to Kevin_M and BMonee for your inputs. I have a natural disinclination to taking 'unnecessary' tablets, (preventatives), but if things get bad enough then I will explore it futher with my GP - at the moment the oxygen and Almotriptan (and hopefully hot strong coffee and/or ice cold Redbull) are providing the necessary relief. I will try to keep it as simple as possible for as long as possible and leave the other 'weapons' in the armoury in case I need to vary things in future. Thanks again to you all - a problem shared is a problem halved, as they say, and you guys on this site must have reduced countless problems - may it continue for as long as it is needed, and may it be needed less and less. JoeKen |
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Title: Re: Cafeine as a Preventative? Post by LeLimey on Sep 10th, 2005, 5:50am I'm glad to hear you are coping well at the moment Joe! Just remember where we are if you ever need to ask anything! Oh and if using O2 at night (or any time for that matter) another important thing to remember is to NEVER use the straps to keep the mask on. ALWAYS hold it on. There is a danger of falling asleep on the o2 once you start to get relief from it and of the tank running out so please bear that in mind!! Good luck and keep us up to date with how you are doing.. we like to know! Helen on 09/09/05 at 19:56:02, BMoneeTheMoneeMan wrote:
BMonee I kid you not! I have only very recently found out myself what was in it!! I have to say I was pretty shocked after hearing of so many people who are addicted to it but there you go.. welcome to the funny farm! Oh and on the melatonin, I tried the health food shops and local pharmacy first and got treated like a junkie (go figure - should have just bought solpadeine huh?!) so then went to the doctor and you cannot even get a prescription for it here. The only way you can get it in the UK is to buy it from websites such as vitacost. |
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Title: Re: Cafeine as a Preventative? Post by marty on Sep 10th, 2005, 5:53am Hi JoeKen I drink strong coffee when I get hit. I also inhale the vapors :-/ and I have been told that the vapors from coffee is considered hazardous - so it must do something good. I don't really know if it actually aborts the hit - mine usually lasts for 40 minutes or so but when on the road or doing something else where coffee is not available, it seem to me that the hits are so much stronger. For me, the coffee is a routine that I am used to and I am pretty sure that it is a mental help more than anything else. To use it as a preventative, I believe, is not going to work since I usually get hit half an hour after I go to bed. I then go through my coffee-routine and lay back down, fall asleep and get hit again within a short while. I repeat the ritual and sometimes, I can sleep for an hour or two... For me, sleep deprevasion is the hardest thing to deal with but I have stayed off the usual meds since I seem to be able to cope with my "mental cluster aid" (coffee - and lots of it). We are all "alone" when dealing with a cluster hit and must remember that the way we deal with it mentally (I think) determines how we experience the intensity of the attack(s). I also believe that we all develop a special ritual, that is unique to each individual, in my case it is my coffee, others take hot/cold showers, stick their head in the icebox and all kinds of other "crazy" things. No matter what a person does, it is a way of dealing with it. Best wishes Marty |
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Title: Re: Cafeine as a Preventative? Post by AussieBrian on Sep 10th, 2005, 7:46am Just another side to coffee and CH. When I know I'm about to get walloped I get into ordinary OTC painkillers and wash them down with a good strong brew. It makes the pills work much more quickly and I can get away with taking less of them. Where it's a monster hit, of course, it makes no difference at all, but helps heaps with the pesky littler ones. Just my two bean's worth, hope it helps. Brian. |
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Title: Re: Cafeine as a Preventative? Post by JoeKen on Sep 10th, 2005, 8:26am :) Mainly aimed at AussieBrian:- Hi brian, Thanks for your 2 beans worth. Unfortunately I am advised by my GP not to take OTC painkillers because they contain NSAIDs and he thinks they will irritate a problem in my stomach that he suspects I may be prone to. On a slightly different subject, can I commiserate with you on losing the Ashes, which is now looking increasingly likely due to rain stoppages [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] :) :) :) Sorry, I couldn'y resist the temptation - hope you take it in the same spirit as the whole Test series has been conducted in - bitter rivalry, but smiles all the way, exactly how sport should be. JoeKen |
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Title: Re: Cafeine as a Preventative? Post by E-Double on Sep 10th, 2005, 8:31am Caffiene will not work as a preventative my friend. As Floridian pointed out it can also deplete melatonin levels (doesn't stop me from drinking it) Too much is not good as a general rule and like many things you can become dependent on it. When you don't get your fix you can develop a bad withdrawl headache.....feels like a migraine/tension HA which also sucks! In addition, I understand your feelings of loyalty to your doctor who finally "understood" and that has helped you. I went through this with my last newurologist. The problem was that like you, I was not getting the best possible treatment. HE was compassionate, lovely BUT not aggressive and would not try certain things despite the research and despite me being in awful condition. That is unethical!!! He gave up on me! I am lucky enough to go to NECH which has docotrs who know their stuff. Good luck and do not hesitate. ADVOCATE FOR YOURSELF! Eric |
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Title: Re: Cafeine as a Preventative? Post by Mike_F on Sep 10th, 2005, 8:53am on 09/08/05 at 23:24:08, BobG wrote:
Ah... the frozen-banana therapy debate goes on. Unfortunately, the prime researcher exited his cycle before any real data could be collected, but we expect to hear more on this in a year or so (poor bastard). Seriously, coffee works works great for me and I don't care if it keeps me up all night. If I feel a hit coming while on the road I'll pull into a store and grab a Red Bull. Both of these abortives have saved me money on meds as I rarely have to resort to the Maxalt (usually just for the bad ones in peak cycle). |
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Title: Re: Cafeine as a Preventative? Post by AussieBrian on Sep 10th, 2005, 9:43am on 09/10/05 at 08:26:36, JoeKen wrote:
Ashes? Schmashes. We need the rain a bloody sight more than we need flannelled foolery! 'scuse me, it's coffee-o'clock. B. |
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Title: Re: Cafeine as a Preventative? Post by BobG on Sep 10th, 2005, 6:57pm on 09/10/05 at 03:24:57, JoeKen wrote:
This was cut and pasted from under “the button on the left” And it is important that you cut off any elastic band that will hold the mask onto your face--if you fall asleep with the mask attached, you may suffocate if the oxygen supply runs out. If this happens, it is important that the mask falls away so that you may breathe regular air. Your body will protect you to survive. |
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Title: Re: Cafeine as a Preventative? Post by bnfreeman on Sep 10th, 2005, 9:49pm I tried the strong coffee thing and mountain dew all day and I think it made things worse. I started to eliminate caffiene and my shadows got better. But as you all know these things change. Red Bull helps, like Helen said, it's better icey cold. I am back to caffiene, but only tea and Coke. BF |
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Title: Re: Cafeine as a Preventative? Post by BarbaraD on Sep 11th, 2005, 8:09am I "guarantee" that banana peels will NOT work (already tried that - but fruitflies love them), but coffee helps. I have "learned" over the years of being chronic to get out of bed at the first sign of a CH (shadow) and get some coffee down immediately. This usually aborts a good one. If it's reached a 4 or above I hit the O2 along with the coffee. During the day if a shadow appears I hit the coffee pot immediately. There are the times that I go from 0-8 or 9 without warning and it's time for something serious, but usually I can abort with the caffine (hopefully). At my office letting the coffee pot get empty is a mortal sin. I'm not a pleasant person with a full blown CH. Hugs BD |
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Title: Re: Cafeine as a Preventative? Post by phydeaux on Sep 11th, 2005, 3:25pm My Dr (Neil Raskin) just started me on a ergotamine/caffeine mix (Migergot is the perscription name) in conjunction with lithium. I have noted that when my caffeine intake drops or increases too much, I've just set off a real nasty round. In fact, in the MA's, if I'm "shadowy" 'when waking up, caffeine is contraindicated, as it sets off a long bad day. Just my two cent's, burn 'em. |
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Title: Re: Cafeine as a Preventative? Post by jon019 on Sep 11th, 2005, 5:32pm Hi All, New poster here. I laughed, I cried, I thanked the Lord when I found this site (by accident while surfing med sites). Your sense of humor and openness are as much help as any treatment I have tried (dozens, both medically accepted and alternative). Have to comment on caffeine because it is a great hammer (pun intended) when used wisely. So you know where I am coming from and use that to relate to your own situation, I am a scientist and think in terms of dosage and timing and side effects and, and , and... Please, I don't intend to imply that I know more than anyone else or my way of thinking is better. Just think info should be filtered as to its source. Enuf Caffeine: At the wrong time is a trigger. Means no more morning cups for me. Will prevent if taken just before regular (and mine are REGULAR) hit, e.g 1:00 pm and 7:00 pm. Many other "regular" times but these are the most consistent. Must be black, hot and chugged and double strength (or more). I microwave two large scoops in a cup of water and filter the grounds with my teeth. Yeah its funny, my brother thinks so anyway (filtered just doesn't seem to work as well). Used at other times of the day and (and I do out of desperation) it means I will pay with intractable later (usually in bed at one hour intervals EVERY hour til dawn) But sometimes it is a price I HAVE to pay. Occasionally have to forgo entirely or any effect is lost. Haven't tried melatonin (yet) to aid sleep because the exhaustion from the pain overcomes caffeine effects and I know I will get one hour anyway. Also getting used to the effects. Use a good brand, it is an awful way to drink coffee but it doesn't have to be gagging. Lots more to say (I write a lot, and usually better) during a cycle but enough for now. My highest regards Jon019 |
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Title: Re: Cafeine as a Preventative? Post by JoeKen on Sep 12th, 2005, 2:00pm Aimed mainly at jon019 - Welcome to the fraternity !! I am relatively new here myself, particularly on the subject of caffiene, and I also tend to be a bit 'wordy'. The point that I would like to make to you, (but you are probably already aware), is that it is possible to o/d on caffiene, and not in the strictly medical sense. Is it possible that, with your situation, less might be more, in the sense that fine tuning (lowering) your dose might give you a better result. Putting caffeine into your system at the rate that you do might possibly be swinging the pendulum too far and be triggering your next attack after suppressing the target one - not trying to be clever, just trying to help, like every other poster :) :) :). By the way, what is 'chugged' in relation to a cup of coffee? JoeKen. |
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Title: Re: Cafeine as a Preventative? Post by jon019 on Sep 12th, 2005, 9:13pm Hi Joeken, Thanks for the reply. Yup, I recognize the possibility of swinging the pendulum too far. Been 23 years now and just when I think I've got it dialed in, the beast mutates. Been desperate lately and probably overdoing the caffeine, appreciate the reminder. Chugging joe is just like chugging beer. Absolutely believe the hotter the better so down the hottest I can stand the fastest I can stand. Whatever works, right? Sometimes its a mind game. If you think it does (or doesn't) well then... Regards Jon019 |
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