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Title: noob to the boards, 5th run of the gauntlet Post by meshuggah on Mar 10th, 2007, 8:26pm looked over some of the messages here and realized i don't know what classifies chronic and episodic and all that. i'll figure it out eventually i'm sure. i'm dan and i've been getting clusters every 2-3 years (for 1-6 monts) since 94. call it the conspiracy nut in me but since coming back from the gulf war in 91 and finding out my good friend and fellow platoon member is having them too...i eye that suspiciously. but anyway! in the time that i've had them, imitrex naturally seems to be neat, i'm taking the pills and i can feel the headaches when they're coming from way off, so if i'm paying attention and i drop everything and go get a pill it's not so bad. 25's aren't cutting it though, gotta have the 50's. last spell me and the doc tried all kinds of stuff, and when we landed on verapamil that seemed to really do it. it was like the headaches were a searchlight and verapamil was a thick blanket covering it up. i took the pills for a few weeks without headaches and when i stopped, the blanket was removed and they started up again. verapamil makes my heart feel funny though, apparently its "primary" use is as a heart medicine. now that i've started the headaches again i've got a new prescription and honestly i'm just kind of scared to take them. the oxygen never worked for me. the best thing about the oxygen was having a nice cool metal tank to lay my head against from time to time. just got a bottle of sinus buster "headache formula" (diluted pepper spray in a bottle), and as far as i can tell, it's no help. i'll use it up and see if i notice anything about it, but i'm not holding my breath. this spell seemed to start within a few days after seeing the dentist. got a filling in a molar on the upper left and had a dead spot in my face for a couple days, i guess he really shot me up good. well that dead spot turns out to also be one my left side 3 points of pain from the headaches, and now it's on. damn the dentist! why couldn't i brush more! |
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Title: Re: noob to the boards, 5th run of the gauntlet Post by Guiseppi on Mar 10th, 2007, 9:06pm Hey welcome to the board! Throw that pepper spray away. I haven't seen anyone get relief with it. I think the nose hurts so danged much from the pepper it makes you think less about the CH! Sorry to hear the 02 didn't work. Was it started at the first sign, with a non re breather mask and at a high enough flow? (up to 15lpm?) The 02 is effective for many here, just want to make sure your doctor gave you the good advice on how to make it work for you. Verapamil is the first line of prevent for many. I use lithium when on cycle, 1200 mmg a day, stops the majority for me. Welcome to the board, make yourself comfy in your new second home! Guiseppi |
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Title: Re: noob to the boards, 5th run of the gauntlet Post by Kevin_M on Mar 10th, 2007, 9:45pm on 03/10/07 at 20:26:59, meshuggah wrote:
If you should decide to, taper up very gradually and see. I get more pronounced side effects for a short while when a medication is new. It is a blood pressure medication, tell your doc about how you feel. Some here are able to gradually get up to 720mg and there are some who would not, lower levels do just fine or it's not effective or agreeable. It appears effective for you, whether agreeable is a question. Preventives are important though and it appears most all prescriptions for it have side effects in various ways. Of course, I'm no doctor. I take verap but keep doctors appointments for checking things about every 45 days. Welcome |
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Title: Re: noob to the boards, 5th run of the gauntlet Post by ClusterChuck on Mar 10th, 2007, 10:04pm So sorry the beast is back for you. First of all, a chronic is someone who gets hit every day for over a year, without a break of (I think) one month. You sound to be episodic. You have PF months between your cycles. The oxygen: PLEASE try it again. And MAKE SURE you have the right equipment and procedure. If you don't do it right, it won't work. And even if you do it right, with the right equipment, just because it didn't work one time, in another cycle it may work. I have times where it only works around 10% of the time, and then other periods where it works 95% of the time. Don't give up on a very safe and proven method. So ask away, with any other questions you may have. We want to get you as painfree as possible. Chuck |
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Title: Re: noob to the boards, 5th run of the gauntlet Post by meshuggah on Mar 10th, 2007, 10:28pm when i first heard of the oxygen treatment during my last cycle, i asked my doctor (she's just...i don't what you call it - family practice, first line of physician assistance kind of thing) and she wouldn't do it. 2 or 3 times i asked her, and she never would. a friend up at work had used it, he's the one who told me about it. he said it worked great for him and he still had his tank, and he was between cycles himself, so he let me use his, explained how to use the tank, what the gauge meant and how much to go with and ramp up from and all that. since it's been a couple years, i don't recall specifically exactly how much relief i got from it; i think i got a little, but never very much. i no longer recall the specifics of the breather mask or the specific dosages. i've long since returned his tank to him. now, it's entirely possible i was either doing it wrong or to a dosage that wasn't working, whether it be too much or too little. and i doubt i'm going to get much positive assistance from my doctor since she was so reticent to even consider it in the first place. maybe i'll give her one more try and then seek an alternate route, find someone who has prescribed it and understands it. as for the pepper spray, yeah i hear ya. my sinuses always seem to be gravely affected by headaches (whether they clog up and pressurize my ear or clean out bone dry, it alternates), i figured it couldn't hurt to give it a shot. i mean, it couldn't hurt any more than having a simulated chili pepper crammed up your nose, that is. ;) and as for the verapamil dosage, how do i ramp up? i mean all i have are 120mg pills, prescribed at 1 a day. they were 120 mg pills last time when they worked and made me feel kinda funny. can i cut them in half or something? |
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Title: Re: noob to the boards, 5th run of the gauntlet Post by LeLimey on Mar 11th, 2007, 4:41am Hello meshuggah, I'm so sorry you have to be here but I'm very glad you have found us and we will do all we can to help you I promise. Firstly before I get into the CH stuff, thank you for what you did in keeping the world free for all of us, you have my gratitude and that of everyone else here too. You mention verapamil which is a preventative - ie it works on reducing the cycle but not on individual hits. Do you have any abortives? IE meds which work (or don't!) on each individual hit? What other meds have you tried if any? Do you get hits at specific times of day or night? How long does each attack last if untreated? I know I seem like a nosey old bag from hell (and make no mistake 'cos I am ;) ) but it will really help us help you. There are things such as melatonin for instance which are hugely effective if used for night time hits for many people. Anyway, to get back to the verapamil, 120mg isn't going to do diddley squat for you hon, doses here range right up to 960 mg per day with an average being around 480mg. You can get 80mg tablets so its easier to taper up. Verap is a blood pressure drug and in the words of Professor Goadsby who is a world eminent CH specialist "Clusterheadache sufferers take truly heroic doses of verapamil" Your doctor might be used to giving 120mgfor BP issues but its just not going to be effective for CH. When taking verap you should have an ECG before commencing it and at every increase of dose, your doctor would decide your regime as he or she knows your medical history, I've seen increases occur from every 3-7 days. Its wholly personal to you as is the point at which it becomes effective. Please also note that whilst taking verap you shouldn't either eat grapefruit or drink grapefruit juice as it can intensify the effect of verap which isn't good even if it might sound it sometimes! You just don't know how it will react in you. A common combo when starting verap is to use a prednisone taper, high dose pred will block hits while you taper up on the verap with the idea being as you taper off the pred that the verap kicks in and holds the hits at bay. Pred is a nasty old drug really, its a steroid and is NOT intended for long term use, counting tapering down from it you really don't want to be on it for more than 3 weeks at most. Obviously these are all drugs which are prescription only. I'm giving you the info so you can discuss it with your doctor but having no idea of your medical history I don't know if any are suitable for you. Are you seeing a neurologist or just a family practice doctor? Ask for a referral to a headache specialist neuro if you aren't seeing one as family doctors rarely see a CH patient and most admit to being out of their depth - you deserve the best treatment you can have so go for it! In the meantime, lets talk home remedies! Alot of us here find either ice or heat help alot. A bag of frozen peas wrapped in a tea towel is one of my best friends, I can't bear heat when I'm getting hit and it tends to be a trigger for me but others here swear by a hot shower hitting right onto their face. Strong coffee or red bull ( generic equivalents work just as well) are also very effective if used at the first twinges of an attack. In a hit the blood vessels on the affected side of your head swell by up to 20x their normal size and the only thing that will kill that pain is getting them reduced ASAP. Thats why normal pain killers don't work, they just do not work in the right way no matter how strong they are. What we need are vaso constrictors, drugs that constrict your blood vessels (such as triptans from a doctor) Caffeine and Oxygen are also vaso constrictors which is why they help us so much. In red bull there isn't just caffeine but taurine as well which increases the effect of caffeine - sort of like a turbo boost! I "love" it, it really works for me but I have to say, whilst I love the effect I shudder every time I have to chug it (and you do have to knock it back as fast as you can for best effect) - it just tastes bloody awful!! (Some people here say they like it but I think they're sick! ;) ) Please look into giving O2 another go. Ideally you want a non rebreather mask and to be using it at 15 litres per minute, yet again if you wait too long to get on it - and this goes for ALL abortives really - you lessen the chances of it working or at least make it take longer to kick in. Don't give it a chance to build if you possibly can. We'll all help all we can with o2 tips as well. In many ways I think the most insidious part of this condition is that each of us react differently to everything. What meds work for one don't touch the sides in another and that makes it devilishly hard to treat. I've said it before and I'll no doubt say it again but I do think CH is the ultimate designer headache, none of us have it exactly the same as anyone else :( On an up note though, we do all understand exactly what you are going through, we'll help and support you every step of the way and if ever you need a kick up the arse - well we'll provide that too!! Welcome to the family! Helen |
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Title: Re: noob to the boards, 5th run of the gauntlet Post by BB on Mar 11th, 2007, 9:38am Just want to say hi and welcome and sending painfree wishes :) Annette |
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Title: Re: noob to the boards, 5th run of the gauntlet Post by TonyG1 on Mar 11th, 2007, 8:03pm I can't add much to what others have said; however, welcome to the board! So sorry you're in pain right now but you're in the right place! |
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Title: Re: noob to the boards, 5th run of the gauntlet Post by meshuggah on Mar 15th, 2007, 12:22pm firstly, thanks everyone for the kind words. so it's been 5 days since the last post. 120mg of verapamil is actually doing just fine so far. after about 24 hours i find that i'm vulnerable for another attack, the blanket has been peeled back, so to speak, and it just depends on if i'm due for another i suppose. only once since taking the 120 verapamils have i had a real attack, i woke up with one a few nights ago around midnight. am i going to build up a tolerance to this stuff? abortives: i only have imitrex tablets, 25's and 50's. as long as im mindful of my pre-symptoms, the timing isn't an issue. other meds attempted: there were some, and i no longer recall what they were, it's been two and a half years. i know they didn't work, i forget what they were. i'm sure my doctor has it notated somewhere. hit timing: kinda. over the course of attacks, it's random. but from day to day, it kind of shifts. if i don't have verapamil masking it, obviously, there are patterns that shift slowly. i'll start with 1 a day 2 a day, near the same time, and as the frequency increases, the times will shift, but not by a lot. untreated, attacks last about an hour, an hour and fifteen. ironically, i have some melatonin, so i'll try to add that in to my mix. i'm only seeing the family practice doctor. last cycle, i went in for a couple different mri's, and the one where they feed you into a machine...is that a cat scan? i'll talk to her about a headache doctor next time i'm in. if i can get to one of those, i can ask that one about the oxygen. heat and cold have had varying affects. i remember last time really just having to have a hot shower with the pulsating head hitting me in the cheek but i tried to take a shower a couple days ago like that and i about threw up. cold only seems to be a distraction, but hey, you take what you can get sometimes. i'll have to go get me some red bull too. for now though, i'm at a bit of an impasse. the verapamil seems to be covering it up fairly well, but we'll see how things change over the next few weeks. thanks again everyone =) |
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Title: Re: noob to the boards, 5th run of the gauntlet Post by LeLimey on Mar 15th, 2007, 12:36pm Ask your doctor about imitrex subcutaneous injections as the pills just don't act fast enough - they can take up to two hours to kick in and your hit is over by then. The injections take 5-10 minutes. Another triptan worth knowing is Zomig. Nasal sprays of this work in 10-15 minutes but have the added beauty of lasting for up to 12 hours (Imi lasts for up to 2) so it can and will block further hits. You can use up to three of these per day too whereas most triptans have a limit of two doses. Bear in mind you shouldn't mix two types of triptans within 24 hours. As for the verap, if you got some 80mg tablets as well as the 120's you could increase at a smaller increment if that would make you happier - you want to get to the point where you aren't getting breakthroughs as regularly as you are so I'd definitely recommend you discuss that with your doc. The Melatonin is definitely worth a try for hits at night. Usual doses people here use range from 6-9mg. You might want to look on the meds board for more posts about it. O2 I can't recommend highly enough, its my life saver along with cheap red bull equivalents and strong coffee (although that may be 'cos I love coffee too of course! LOL) Keep updating us with how you're doing, we'll keep suggesting options or tips on how to get maximum benefit from the ones you DO have. Once you do get O2 we'll help you use it correctly too. There is a knack to making it work well. Its good to hear from you! Helen |
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Title: Re: noob to the boards, 5th run of the gauntlet Post by thebbz on Mar 15th, 2007, 3:16pm Welcome, listen to the good advice your being given. Read the tabs on the left. Get a referral to the neuro. Try the 02 again and properly this time. all the best jb |
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Title: Re: noob to the boards, 5th run of the gauntlet Post by meshuggah on Mar 26th, 2007, 2:24am went and saw a new doctor, a neurologist. he'd heard of o2, he knows about all of these drugs, really, even mentioned the 24 hours between imitrex and zomig when i asked him about zomig. he told me to up my verap to 240 and expect to move on to 360 (the 120's alone did stop being effective), but he wanted to give it and imitrex more time before prescribing o2, i'll go see him in 4 weeks. he also said when my current imitrex runs out he'd prescribe me 100's. is there some way a can break those in half? 50's make me feel weirder than any dosage of verapamil has so far ;) but they do still seem to get in my system fast enough to do the job, so *at this point* i'm holding off on trying to get injectors. if the timing starts not working out, maybe i'll look into the nasal sprays or something, ramp up from there. i got a fridge full of red bull, that does actually seem to work for me. not that i doubted, but i'd be lying if i said i wasn't surprised. and i'm with you on the taste. somehow i imagine this is a carbonated form of what anti-freeze must taste like. $2 a can! better than $20 a pill i suppose. anyhow, that's the latest. my band has a gig next saturday, so here's to wishing that i don't get walloped with an attack on stage. though that could make for some compelling performance art. the guitarist asked me to write lyrics for one of the tunes, so i started writing lyrics for a song called "beast". ha. |
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Title: Re: noob to the boards, 5th run of the gauntlet Post by ClusterChuck on Mar 26th, 2007, 5:07am on 03/26/07 at 02:24:50, meshuggah wrote:
OMG!!! Is this doctor meshugganah? You need to find another doctor! He is WAITING more time for imitrex and verapamil to work? That is bullshit! Mind you, imitrex and verapamil are wonderful drugs, but each has lots of possible side effects. Oxygen has virtually none! DEMAND a prescription for oxygen! Also, oxygen is an abortive, like imitrex. Verapamil is a preventative. So I don't see the logic in waiting. ALSO, oxygen is MUCH cheaper than imitrex ... on 03/26/07 at 02:24:50, meshuggah wrote:
I am surprised that the pills are working for you. You are lucky. For most of us, they are way too slow getting into the system, and working. Many of us get relief within 5 minutes from taking the shot (injection), and it is VERY easy to use, even for those that never thought they could self inject. It is done with an automatic injector pen. Anyhow, good luck, and try to get that oxygen! Print up the information, from the left hand margin tab, and bring that in to him. It is AWESOME stuff! Keep us informed! Chuck |
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Title: Re: noob to the boards, 5th run of the gauntlet Post by stevec on Mar 26th, 2007, 2:18pm In most of our experiences, O2 is the most effective way to abort CH's and when used appropriately, there are no side effects...well, you do get a little light-headed. Still, every sufferer of CH's should give it a try. It is cheap and effective for the vast majority when used properly. If your doc won't prescribe it for you, ask why??? Also, when all else fails, Imitrex injections are the most effective abortive medication for CH's for most of us. You can get the single dose auto injector, or you can use the vials. The advantage of the vials is that you can draw up how much you need and use a MUCH smaller needle. Talk to your doc about these meds. I hate to see you try to cope in the absence of two of the most effective weapons against the beast. |
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Title: Re: noob to the boards, 5th run of the gauntlet Post by pieface_49 on Mar 26th, 2007, 10:25pm Hello meshuggah, Thank you for the sacrifices you have made to allow the world to be a better place. I cannot thank you enough. Welcome from one newbie to another. I found this place through research and study. I strongly believe I have CH, yet won't see the Doctor for conformation until April 9th unless they see something on an MRI I had today. My path took me to a book "Trigeminal Neuralgia, Fighting Back". I believe it well worth the money even if you know you have CH. It will let you see and understand all the different facial pains known at the time it was written. It is written for the public to understand. From that book I learned I could have 1 of 4 afflictions. I narrowed it down to two. Sphenopalitine Neuralgia or CH. After reading the testimonials on the opening page of this board and reading what others have written, I lean towards CH. I hope your cycle is short and remission is permanent. |
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Title: Re: noob to the boards, 5th run of the gauntlet Post by LeLimey on Mar 27th, 2007, 2:17am Meshuggah - don't be daft hon, don't buy the red bull, buy the geeric varieties that are a lot cheaper. I don't know if you have a Lidl's or another ceap store like that near you but any stores own high energy drink will do the trick as long as they have both caffeine and taurine - believe me I've tried the lot! (I thought they couldn't ALL taste that bad but guess what? They do!) It's good to get an update from you but I'm with Chuck, to hold off on O2 which is the cheapest possible treatment to give more expensive stuff a chance is just mental. Get back to the octors and demand the O2 - you'll never be sorry I promise! Helen |
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