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Title: A few questions from a newcomer Post by TrepanationHead on Sep 12th, 2005, 9:40am Hello, First, thanks to all who contribute and maintain this forum. It is an invaluable resource. I've recently been diagnosed and I have a few questions. I'd appreciate any and all advice. I'm a 38 YO male and I've been experiencing cluster headaches for the past four weeks. I've attacks 5 or 6 days per week and usually only have one attack per day between 8 and 10 pm. On occassions when I've had multiple attacks, they usually occur in the afternoon and are less intense than the evening attacks. Based upon what I've read here, I think I'm fortunate relative to many, as the evening attacks usually max out in the 7-8 range of the kip scale and the afternoon attacks usually max out around 5-6. I've been prescribed Verapamil-sr and maxalt 10 mg. Yesterday was the first day I took the verapamil and I did not have an attack. I just experienced what I guess folks here call "shadow" during the usual time (i.e., tell-tale pressure behind my left eye and around my temple). The two previous days (before the Verapamil) I was able to shorten/abort attacks with the maxalt. So now for the questions. First, this may be an odd one, but I started wearing contact lenses around the time that I began having headaches. I'm wondering if the onset was just a coincidence or if mucking around with my eyes and wearing the lenses triggered the episode? I've experimented with not wearing the contacts, but there does not appear to be a correlation between wearing them and getting an attack. Nonetheless, I figured I asked the collective to see if anyone has had similar experiences. I'm basically trying to decied if I should just shelve the contacts. Second, how dynamic are the symptoms? In the long run can I expect more of the same or is it likely to worsen with time? Finally, because it appears that many effective (at least abortive) medications involve serotonin (5-ht) agonists, is there any evidence that SSRI's are effective at preventing/ending cycles? On the ouch website, they list tricyclics as a potential med. I'd think that SSRI's would work as well with fewer side effects. In a similar, but wholistic, vein, has anyone had good experiences with St. John's Wort or diets high in Tryptophan? Well, thanks in advance for your time and trouble. I hope my questions aren't too redundant with the usual newcomer questions. I did a little searching before posting, but I wouldn't be surprised if I missed some previously posted information. All the best, Eric |
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Title: Re: A few questions from a newcomer Post by LeLimey on Sep 12th, 2005, 10:08am Hello Eric and welcome, Verapamil has a cumulative effect in the body so I don't know that it could have been that that stopped you getting hit yesterday, you usually start with a lower dose and gradually increase it with, for most people it really taking a week to two weeks to "kick in". I'll happily be told I'm wrong on that though! I'm glad you have the Maxalt too, obviously that is helping you somewhat although there are faster acting triptans in Zomig nasal and Imitrex nasal and injections. I can see you have done alot of research already. Have you looked into using O2 as an abortive? I personally can't recommend it enough. Its my "drug of choice" to abort with every time and will abort for me within 5-10 minutes 99% of the time. I think the contact lense question is a coincidence. I'd love to be able to tell you it's something that simple but it isn't :-/ You might find them extemely irritating when getting hit though. I know for alot of us anything near our face, neck or head gets ripped off or pulled out. I wear contacts some of the time, I do avoid them during periods when I'm getting hit hard though. As to the will it stay the same or worsen with time? As yet there is no knowing how long your cycle will even last, you may be lucky and get one every few years as some people do you may end up with one of a thousand other "combinations" that I'm sure you've noticed from reading threads! I was looking up serotonin and tryptophan earlier myself and one of the things I read was that foods high in trptophan aren't neccessarily that beneficial because nutritionists and other experts say that the tryptophan in food probably won't trigger the body to produce more serotonin because tryptophan works best on an empty stomach. The tryptophan in food has to vie with all the other amino acids that the body is trying to use. So only part of the tryptophan makes it to the brain to help produce serotonin I did find a lot about tryptophan supplements and how they were banned! Check out Floridian's website http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Serotonin There is alot of useful info there. I hope this is of some help! Oh and let us know what you find out too, I'll be interested to know what you think. Regards Helen |
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Title: Re: A few questions from a newcomer Post by lionsound on Sep 12th, 2005, 8:50pm Hi Eric, Lets see I can try to respond to a few of your ?s...... contacts: I alternate a lot between contacts and glasses and I used to wonder the same thing , but have come to realize it makes no difference which i wear..my head is still gonna hurt. When it does hurt I tend not to put in my lenses ... too annoying ...if my eye is j red and iritated and swollen and leaking I can't anyway. About TCA's and SSRI's: I have CH and Migraines and ice pick HA and have been tried on both med classes for depression and to maybe help as a preventative for my headaches... they are used in migraine treatment more so than CH. Neither med class worked much at all either of my headaches. Have you tried O2..air is pretty wholistc ;;D. http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm it's my first line abortive....pretty much my only abortive right now. be well and PF! :) -lionsound |
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Title: Re: A few questions from a newcomer Post by TrepanationHead on Sep 12th, 2005, 9:14pm Hello, Thanks to you both for the replies to my questions. Glad to hear that I don't have to permanently shelve the contacts. That link is great. Thanks, Helen. The verapamil info is useful too. I didn't realize that there was delayed onset in the treatment effect. I assumed the dose taper was to assess for adverse cardiovascular effects and to identify the minimal effective dose. Yes, I've read a bit about O2 and I'll look into that if need be. Right now it's all new to me and I don't have any data regarding episode duration and periodicity. I'm still naive enough to hope it'll all end tomorrow. I think I'm fortunate enough to have a reasonable physician. I've read a few horror stories on here about folks who were misdiagnosed and improperly medicated for years. He seems to be knowledgeable on the subject. He even mentioned the O2 technique to me, but stopped short of prescribing it at this early stage. Thanks, Lionsound, for sharing your ssri experiences. I'm curious, though, were you able to use triptans when you were on it? One downside about experimenting with things that modulate 5-ht levels is that it may rule out using abortive triptans. Well, thanks again. I greatly appreciate you taking the time to help me in this time of uncertainty. Best, Eric |
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Title: Re: A few questions from a newcomer Post by LeLimey on Sep 13th, 2005, 3:56am You might be interested in looking at the Kudzu threads too, there is also more info on it on the med owl site. Melatonin is something else alot of people will recommend. Keep asking questions - the more the merrier!! The only stupid question is the one you wanted to ask but didn't :) Take care Helen |
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Title: Re: A few questions from a newcomer Post by E-Double on Sep 13th, 2005, 6:52am Hiya Eric This is a great resource to know like the back of your hand...print it out and give it to the doc http://www.brightok.net/~mnjday/chtherapy.pdf It will present the appropriate treatments that you should seek and your doctor should know!!! If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!! http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover" http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753 Best wishes, good luck & stay as positive as you can!!!! Eric ;) |
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Title: Re: A few questions from a newcomer Post by jcmquix on Sep 13th, 2005, 7:03am Hi Eric... Nice to meet you.. sorry its under these condition, but its all good... I just thought I'd give you some of my input.... on 09/12/05 at 09:40:35, TrepanationHead wrote:
I have been having CH as long as I can remember, I only started wearing contacts about the time I was 20yrs old, I am now 37yrs old... I had them before, during and now... never really changed my cycle, but as Helen stated, they are hard to deal with if I am getting hit hard, I have a tendency to overwear them, past the 2 weeks disposel time, just being that my eyes and head are so sore from the hits.. but when I am having a good day I will change them out... on 09/12/05 at 09:40:35, TrepanationHead wrote:
As for this question, everyone is different... I just came out of a 3 month cycle... I was PF for almost 3 years then they just came back.... As for the intensity of the cycles, they always vary some have been worse than others... This was one of the worse cycles that I have had in a long time, I think its been that way for alot of us.. I hope this helps somewhat... PFDAN's to You !! Charlie |
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Title: Re: A few questions from a newcomer Post by marlinsfan on Sep 13th, 2005, 7:36am Eric, welcome to the nuthouse 8) Until you figure out your cycle, keep track of what you eat. My gut tells me that since you don't get attacks every day during the afternoon (you wrote that you get them every night, and once in while in the afternoon), your afternoon attacks are triggered by something you've eaten or drunk. I have some triggers that will bring on a CH attack: alcohol, aspartame (equal), citric acid, tomato, nuts, milk chocolate (dark is OK), and a few others. Do you drink coffee? I can abort a daytime attack if I drink a strong, cold, glass of coffee early enough when the symptoms start. If I don't get to the coffee in time, the O2 is also my first line of attack to abort the motherf'er. Good luck and keep us posted. PF wishes. Jose |
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Title: Re: A few questions from a newcomer Post by lionsound on Sep 13th, 2005, 1:02pm on 09/12/05 at 21:14:44, TrepanationHead wrote:
One little note here about the O2 it may look large, but it is one of the safest treatments and it's not at all going "that far." You are just breathing more oxygen and certainly better than trex or other nasty med side effects. Right now it's the only thing i can use. And yes, I was on a TCA and the SSRI and still used a triptan to abort. You MUST ask your doc if this is okay. What I did find was that I couldn't take the triptan at teh same time of day as my other meds...left me very feeling very neurologically unsteady. PF's, lionsound |
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Title: Re: A few questions from a newcomer Post by TrepanationHead on Sep 16th, 2005, 8:41am Hi everyone, I just wanted to say thanks again for all of the input. I greatly appreciate everyone's time and concern. Once I get a handle on my cycle, I'll look into oxygen if need be. Thanks for the tip to be on the lookout for triggers. It appears beer is one. I'm a homebrewer, so that one's been a bit of a blow to the lifestyle. Actually, it hasn't been tough yet, but I imagine, if this episode lasts long enough, I'll just say screw it at some point and take the hit to enjoy a good brew. On second thought, maybe I do need that oxygen. I can put the tank right next to the keg--mask in one hand and mug in the other. Just kidding! ;) I've been avoiding alcohol because of contraindications with the verapamil and this week's been pretty good (only a couple of headaches and some shadow). So, I guess I'll stay the course. Well, thanks again for all of the help. Cheers, Eric |
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Title: Re: A few questions from a newcomer Post by LeLimey on Sep 16th, 2005, 11:07am Hello again Eric As you've found out alcohol is one of the biggest triggers for CH barring nitro! Some of us are able to tolerate it whole more can't. There seems to be a tendancy for people who are chronic to be able to drink and for episodics to be able to drink while out of cycle but not while in it.. however as with everything else to do with CH neither of these "facts" are foolproof! It does sound hopeful that your cycle might be winding down though so I'll keep my fingers crossed for you! Take care, keep us up to date with how you are doing.. we like to know! Regards Helen |
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Title: Re: A few questions from a newcomer Post by E-Double on Sep 16th, 2005, 11:51am Thank god brew doesn't trigger anymore. I take upwardsof 560 mg. of verapamil and can still imbibe. I don't get $hitty but that is for other reasons. Hard growing up huh ;) ;;D Don't wait for the oxygen. Go for it now if you are able to. It might save ya a bundle of $$ if it works and a ton of pain! Best to ya and don't attempt trepanation unless you are under the care of a reputable QUACK!! [smiley=laugh.gif] Eric |
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Title: Re: A few questions from a newcomer Post by fireball on Sep 16th, 2005, 6:27pm Hi Eric- I just wanted to add a few things to what has already been said. At one point my husband had been prescribed Lexapro, and it did improve his cycles. With regards to oxygen: if you try it, be sure to use a non-rebreather mask. The oxygen has to be over 10L too. When my husband goes, it is 100% at 15L. CH are unique to every individual. Everyone's cycle is different. I pray that you will always stay episodic!!!! I do know that early on when my husband was episodic, our PCP just wanted to help him and prescribed narcotics for pain relief. He became chronic and a few years after that we read that narcotics can cause episodic sufferers to become chronic. I don't know if it is fact -- some research says yes -- but if it is possible, I would try to avoid it. Also, magnesium and melatonin are other things you can try. Good luck with everything. You're doing the best thing that you can do for yourself by becoming educated. As I've said before, the people on this site know more than the average doctor about this condition. You definitely came to the right place. |
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Title: Re: A few questions from a newcomer Post by TrepanationHead on Sep 18th, 2005, 11:42am Hi everybody, Once again thanks for all the input. I've a follow up appointment scheduled with my doc in a few weeks and I'll definitely look into oxygen. I've begun taking melatonin too, as the anectdotes and data suggests many people respond to it. Plus, I work in a windowless building that was built in the '70's when architects cared more about energy efficiency than human factors. I can go for days without getting appreciable sunshine so I figure a little melatonin couldn't hurt. One thing that Helen said has me curious. She wrote, "it sounds like your cycle may be winding down." That got me wondering about how cycles conclude. So, do most people usually experience a gradual "wind down" or an abrupt end? Well, thanks again. Be well, Eric |
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Title: Re: A few questions from a newcomer Post by LeLimey on Sep 18th, 2005, 12:07pm It varies Eric, if you read others experiences you see that for some people they do wind down, gradually lessening until leaving completly so you can't be sure when exactly your cycle ends and for others it stops abruptly. Some of us lucky buggers have cycles that never end too ::) The only rule is there isn't one, CH delights in being unpredictable and there is no way of knowing up front how you will react. Only time will tell. I hope that helps! Its nice to hear how you are doing, keep it up! Helen |
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Title: Re: A few questions from a newcomer Post by rossimft on Sep 19th, 2005, 5:39pm Hi eric, I would encourage you to plan for the worst. I held on to an optomistic belief that it would just end tomorrow and never return... for almost 20 years now. Arm yourself with the O2 NOW to be safe. I FINALLY used it for this episode, and I will never be without it in my home again. With all of the pharmaceuticals out there, it is amazing that a basic element is a big dawg. I to am quite an ETOH enthusiast, my preference being fine wine, however I know I can practically incite an attack with a simple sip. The sacrafice is a must for me to make every effort not to invite the demons back. take care. |
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