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Title: looking for ideas Post by miapet on Mar 2nd, 2004, 11:22pm Hi. I've been posting on the treatment/medications/etc spot, and been getting some great help!! I've also read and read and read (thanks to everyone for their posts/sharing!!) and learned some great stuff. But, now I have another question . . . so far, everything we have tried has all been more for aborting a h/a . . .but I need to break the cycle . . .(doesn't anyone in a cycle?) Anyway, some history: my clusterhead has been having h/a for 20 years. He has previously been diagnosed as chronic. This cycle has been going for almost 5 weeks . . .and has went from 1 per night, to 2 per day, etc, and now we are at 1 every hour. He hasn't used pharmacy for 15 years . . and this cycle is bad enough that he WANTED a doctor. We completed a round of prednisone . . .and the cycle has intensified. Does anyone have any ideas on how to break the cycle? If they continue this growth pattern there won't be any recovery time . . . mia (special thanks to everyone who has been so helpful so far!! I posted here because I wasn't asking about a specific med . . .not because y'all weren't fabulous!) |
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Title: Re: looking for ideas Post by Bob_Johnson on Mar 3rd, 2004, 8:09am I wonder if you have a doc with sufficient experience in dealing with difficult headache?? Don't assume that one failed trial with Pred means it won't work. The initial dose of Pred ranges from 10mg to 100mg. One cycle at a low dose may not work. Then you do another cycle at a higher dose. Has your doc considered Lithium? |
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Title: Re: looking for ideas Post by UN_SOLVED on Mar 3rd, 2004, 9:26am IV DHE is used to break a cycle. Might work, might not...but will probably give him some much needed relief. Unsolved |
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Title: Re: looking for ideas Post by Karla on Mar 3rd, 2004, 9:28am lithium at 900mg or verapamil at up to 960mg or trying both of these meds together will sometimes produce desired results were when using them alone wont work. These 2 meds are the most popular with the best results. Try oxygen to abort it is the safest and easiest to use if it will work for ya. Some people have tried Frova which should give 12 hours of relief with one pill. It is a long acting abortive that can be used like a preventative. However, for me it only gave me 2 hours of pain free livin and then the beast was back knockin on my door again. But it is worth a try. Elavil and zyprexa have also been shown in studies to work great for chronic clusterheads. If you do a search on these two meds you should be able to find some dosages that people have tried and had sucess with. I just wanted to add that after seeing unsolved post on DHE I wanted to say I over looked that and that would be a wonderful place to start for trying to actually break the cycle and get a handle on things. |
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Title: Re: looking for ideas Post by miapet on Mar 3rd, 2004, 11:17am I'm sitting here at work . . .greatful it's a testing day . . and writing down EVERYTHING you have all advised, thank you so much! As for the doc, he seemed great . . .I had to fight with insurance (hmo) and the doc (they are a HUGE group, and refuse to refer out, due to bonuses) . . .but was able to get him to a neurologist *yay* . . .unfortunately, the guy is having some health probs of his own, and is out for the next 6 weeks because of surgery. (We are in the process of changing insurance.) I don't have the pred info with me, so I'm not sure what the dose was, I do know that he slept the first 2 nights, for the first time in years *happy dance*. This neuro also wrote for 02, but it took more fighting to get it . . .we've had it 2 days now, and it does abort. He tried Lithium about 15 years ago . . .and it turned him into a total zombie .. .I don't think I can get him to do THAT again, but I'll share everything with him. I do have a DEA question . . .is it dangerous? I know that he had heard of it years before, and at that time, it was a little scairy. I know, danger versus breaking the cycle . . .it's so hard. I will look up all the options you have all suggested, and I will work on getting D what he needs. I appreciate everyone being so helpful and quick to respond! *sending you all positive energy* miapet |
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Title: Re: looking for ideas Post by Tiannia on Mar 3rd, 2004, 6:26pm Wish I could give you any advise but I have none. Just wanted to let you know that you are in my thoguths and the fact that you are there with him is a great blessing mia. Tiannia |
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Title: Re: looking for ideas Post by miapet on Mar 3rd, 2004, 8:21pm thank you for thinking of us . . .I know it will get better . . .I have to believe that . . .and all the information and help we are getting on this site can only improve our fighting ability! Oh, do you (or anyone else) know if O-2 can be used preemptive? For example, if not having a h/a, can we try it right before attempting to sleep/rest? Or, is it best to just use it at onset? miapet |
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Title: Re: looking for ideas Post by JDH on Mar 3rd, 2004, 10:25pm on 03/03/04 at 20:21:15, miapet wrote:
Mia, As far as I know the o2 won't do much good as a preventative measure. Maybe there are some who it has helped that way but it has only helped me at the onset of a h/a's. pfdan's Jim |
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Title: Re: looking for ideas Post by miapet on Mar 4th, 2004, 1:27am okay, O-2 is for abortive, at onset . . .thanks . . . and, as I looked back at all the posts . . .I realized that I asked about the DEA *hahaha* instead of DHE . . .soo same question, only right acronym . . .is IV DHE really dangerous? I know the Internest freaked just seeing the meds the Neurologist gave us . . .anyway, big thanks to all of you . . . I'm keeping you all in positive painless thoughts! |
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Title: Re: looking for ideas Post by thebbz on Mar 4th, 2004, 1:33am I hope all the best for ya DHE IV drip...had it twice aborted but did not prevent. One nurse administered the DHE first...then goes tooling around the ER looking for the hypo lollygagging around looking for the phenegren back up ....all the while I was gagging and convulsing from the DHE my wife went ballistic needless to say good doctors are hard to find. I dont mean to frighten, but the next time they decide to use that poison on me I will say phenegren first please !!!! and when the demon strikes Ill pretty much say give me whatever..... Best Wishes thebbz |
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Title: Re: looking for ideas Post by Giovanni on Mar 4th, 2004, 8:53am Hi Miapet, I sorry to say I never had luck with aborting an active cycle having tried steriods several times, etc. I DID shorten one cycle about 3/4 way thru with a combination of an increase in verapamil from 240 to 360 and adding melatonin @9 mg + B-50 complex. I know it is very difficult to stop cold a well established cycle. My best hope (and working so far) has been to prevent one by prior doses of the alternative treatment. I have read where some cycles were broken with this treatment, but never tried it myself during that time frame. How long has his previous cycles lasted? This should give you some rough indication of how long this one should last. I know that I have gotten slammed during the apex of the cyles and towards the end. Verapamil should really help him, but will take a week or so to begin to work and be helpful. Also, B-Complex 50 vitamin several times a day might be beneficial. Good luck...........hope he's pf soon. John :-/ |
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Title: Re: looking for ideas Post by miapet on Mar 4th, 2004, 9:31am thanks for all of this!! lemme see . . .his longest cycle lasted for a year . . .lets hope that isn't what this is, he's already so tired .. . anyway, today he is going to the internest (who knows NOTHING and is afraid of everything). I'm calling to tell him what I want (and verapamil will be on the list, DHE sounds a little too frightening?). if we can break this one . . .i'll keep all the alternatives going 24/7 . . . it has to end . .right? i am SO glad i found this site and so many wonderful people! Sunday, i have a very important phone call to make! miapet |
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Title: Re: looking for ideas Post by Prense on Mar 4th, 2004, 11:52am on 03/04/04 at 09:31:02, miapet wrote:
As a chronic, I'd suggest settling in for the long haul. I am hoping that you guys have at least found an abortive that works. Keep trying to abort the cycle, but do not stress out about it. That is easier said than done, I know. Long term use of pred comes with its own set of problems. I have heard that many docs do not even like to prescribe a 2nd taper for the same cycle. Just be careful. If he hasn't tried DHE, I'd say go for it. That is assuming there is nothing medically preventing him from doing so. The doc should be able to easily determine that. Keep us posted! Chris |
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Title: Re: looking for ideas Post by rbmb on Mar 4th, 2004, 1:20pm Regarding DHE, I've been using it as an abortive for the past few years (I'm episodic) and I find it quite effective. I inject a 1 ml solution in the large muscle in my thigh with a one inch,25g syringe and the pain subsides in about 10 minutes. I don't feel any side effects (drowziness, etc) and I just return to sleep. The patient directions say not to use it more than 6 days in a row, but I have since I get HAs every night when in cycle and the only thing I notice is that the shot seems to take longer to take effect. It's not much fun sticking yourself with a needle, but compared with the pain of CHs, it's worth it in my book. Rich |
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Title: Re: looking for ideas Post by miapet on Mar 4th, 2004, 10:49pm we have been using oxygen for the past 3 days now . . .keeps the h/a down to about 12 - 15 minutes, although it takes it to the top and then recedes . . .is that common? anyway, I'm glad the oxygen is working, the cafergot is dangerous, and the h/as were coming to often to follow the 'safe' dosage. He had me cancel on the internest, the appt time would have had him out and about during one. As for the pred, the internest wants nothing to do with that (but he would give a huge script of cafergot . . .go figure?), so I'm pretty sure he won't do DHE. I want to see who's covering for the neurologist . . . Rich, you muscle DHE? I thought it was an IV drip, and had to be used only in a controlled environment . . .this is interesting. You use it to abort the h/a . . .I wonder if it shortens the cycle? On a good note . . .the cycle moved to 2 hours apart today *YES* . .so there was a little more recovery time!! Again, thanks for all the help and words of encouragement . . .I don't even want to think what it would be like if I couldn't come here and ask questions!! *positive energy and light* miapet |
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Title: Re: looking for ideas Post by UN_SOLVED on Mar 4th, 2004, 11:36pm DHE...you can get it to give to yourself at home (IM), but I find that most doctors don't like to do it that way. You can't take it everyday, more than once a day, or for long periods. It does have a tendancy to raise your BP. I believe most ppl get it thru an IV at the hospital where they will monitor your BP. You can't mix it with triptans. ALWAYS ask for Phenegren FIRST. I've done this drug many, many times (both IM and IV) and it always gives me a break from the headaches. I'm sure I'll do it again. Having several headaches a day scares me more than DHE. If he's never done it, and he's tired of the pain, it's worth a try. Goodluck Unsolved |
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Title: Re: looking for ideas Post by miapet on Mar 5th, 2004, 9:12am thanks for sharing that it works/relieves both ways. i've talked to him about DHE . . .and he says: last resort . . .I don't know how close to that we are . . .yet . . .we're kinda banking on combining O2 with some alternative treatements. I'm originally from the PNW, and I like a holisitc approach to medicine. It has just taken him a few years to realize that what it means (for me) is combine traditional and non-traditional in ways that work for you. btw, just for a side note, lemon-grass-ginger tea enhances circulation . . .and ginger is good for h/a, like tension and sinus etc, so it's a plus. Ginger steam was also soothing, at the beginning of this cycle, and seemed to abort the h/a, of course, it only worked for a while . . .like everything else. *peace and positive energy* miapet |
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Title: Re: looking for ideas Post by porkchop1 on Mar 6th, 2004, 6:30am Mia - see my last post re: Sinus Buster. It's an absolute miracle and it costs 10 dollars. ;) |
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Title: Re: looking for ideas Post by alone5min on Mar 6th, 2004, 10:35pm Mia, u r 2 b honored for checking into this for your loved one. We aren't easy to put up with during the attacks. I haven't any expert advice on breaking cycles although I came through a chronic cycle with surgery and now am episodic. I too am a degreed naturopath and experienced with all holistic approaches and I haven't happened along the answer there either. Although the herbs you mentioned are good for relaxation. Alternatively niacin that causes flushing is known to keep headaches away and I use it. It has to be taken carefully and unfortunately, it provokes an attack during a cycle :o From personal experience I've found that keeping the onset intensity from becoming too intense (imitrex, other) is the trick and after a week or two, they start lessening on their own. In a chronic situation, nothing usually keeps them from being intense. Is there one attack lesser or more than another for him? There could be some gap there that can be worked with before going for the extreme routes. Sorry, didn't mean to ramble. Good luck and thanks for caring. |
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Title: Re: looking for ideas Post by Mark C on Mar 6th, 2004, 11:23pm http://www.rogotworld.com/forums/html/emoticons/moped.gif |
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Title: Re: looking for ideas Post by miapet on Mar 7th, 2004, 4:31am alone, I'm confused by what you meant about one attack being less than another?(sorry) so i don't know how to answer that . . . Mark . .thanks for the link . . i'm such a tard . .at first i thought . . huh? a blank post! hahahaha, but i figured it out! again, many many thanks for everyone's help! miapet |
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Title: Re: looking for ideas Post by alone5min on Mar 7th, 2004, 10:23pm Sorry for the confusion. I was referring to pain intensity. Is one episode more or less painful than another. Can an attack be limited in duration or lessened in pain level? Or are they all the same? |
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Title: Re: looking for ideas Post by David A on Mar 7th, 2004, 10:49pm IV DHE --- is my friend 8) I know it well and it kick bitt for at least a day or so --- has not broken my cycle but when you hit k10 as we all know it that or :-X. Iam curious if he is not having another problem along with the CH for it to be that bad being hit every hour...??? thanks dave |
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Title: oking for ideas Post by miapet on Mar 8th, 2004, 1:53pm alone and dave (gonna respond to both y'all here *g*) they were all intense and long . .which is why the frantic search for help The round of prednisone gave us 2 days and nights of almost pure peace!! The cafergot (while fighting for the oxygen) would abort. Oxygen shortens the h/a, although it brings it on full force before it backs it out. As for othe health problems . . . he did have some health stuff that on anyone else probably wouldn't have been more than a pain in the fanny, and really was more an annoyance than anything, but it may have brought this on? This isn't the first time he has h/a so close together. The worst was when as one would be ending, another would be starting. Just, as a rule, we don't have them this close together . . . just daily/nightly. I know I would give ANYTHING for him to never have to watch a clock again . . . thanks for all your help and kindness! miapet |
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Title: Re: looking for ideas Post by alone5min on Mar 8th, 2004, 10:35pm The oxygen therapy did that to me too. When I was chronic there wasn't anything in this world that would come close to stopping them nor their frequency. I'm glad he got a 2 day rest. I'm sure it was disappointing on their return though. Been there (still am). Keep us posted on your next move. Take care. |
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Title: Re: looking for ideas Post by miapet on Mar 12th, 2004, 12:52pm Thanks for letting me know that we aren't alone (on the o2 thing) . . .He's still getting hit every 2 hours, but the 02 is kicking them pretty quickly (thank goodness). I'm printing a lot of treatment information, to go armed to the goofy internest . . .at least he (and his nurse) have stopped arguing with us! miapet |
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Title: Re: looking for ideas Post by ljd1963 on Mar 12th, 2004, 1:23pm Miapet...I read this......and I want to cry for him myself. I am starting o2 today..will let ya know if it helps. Be strong...Jim |
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Title: Re: looking for ideas Post by miapet on Mar 12th, 2004, 3:55pm Jim . . thanks for the support . . .I'll be thinking of you. I hope the o2 works well for you . .it's been a relief for D!! *sending you lots of positive energy and light* miapet |
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Title: Re: looking for ideas Post by M8895 on Mar 13th, 2004, 7:30am I wish that I could give you advise. I'm Chronic and have spent close to 2 months in the hospital taking all of the above mentioned meds none of which stopped the cycle. I have been told that I am a very tough case though. I am not posting to be negative at all. Different things work for different folks. That is my point here. What they had tried initially was 02, prendisone, verapamile, depakote, dhe and a few other meds that i can't remember at the momemt. The will come to me. I'm taking Topomax right now. Please watch your blood pressure if you are taking verapamile. It does lower your BP to dangeriously low levels if you are low to begin with. I had a bad experience with that. I'm still in cycle. I"m getting ready try Botox. I'll try anything. Good Luck to you... Connie |
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Title: Re: looking for ideas Post by miapet on Mar 13th, 2004, 10:01am Connie, I wish you the best . . .please be careful. 15 or so years ago, D tried about everything you mentioned (and more) . . .I think the only thing he hasn't tried is DHE, and of course Botox (it wasn't thought of then). Due to all the pharmacy back then, we now deal with vascular damage and high BP (although, with diet etc, we have it very manageble most of the time) . . .we aren't going for DHE or Botox . . .and hopefully no more rounds of any of the 'traditional' medication, as it is all so hard on the body. Our focus now is non-traditional-alternative-holistic . .how ever people want to describe it. Of course, we are feeling really good that the o2 is working as an abortive . . .even if we do have to use it every 2 hours. (yesterday the h/as didn't get above a 6 or 7, so this is good *s*) I wish you the best Connie . . please be careful. *positive energy and light* miapet |
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Title: Re: looking for ideas Post by t_h_b on Mar 13th, 2004, 11:56am Has your husband tried melatonin? |
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Title: Re: looking for ideas Post by miapet on Mar 13th, 2004, 12:36pm that's one thing we haven't tried. I can look when I am getting skullcap today . . |
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Title: Re: looking for ideas Post by miapet on Mar 14th, 2004, 1:02pm WOOHOO yesterday, we managed 7 hours without a full blown h/a!!!!!!!!!!!!!!! lots of anxiety and clock watching (especially the last 3 or so) . . .shadows . . .but not full-blown!!! felt like a miracle!!! anyway . . .from 5pm to midnight is the longest stretch since the pred taper . . . .I just wanted to share a piece of good news with everyone! Thanks for your continued support, encouragement, and ideas! miapet |
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Title: Re: looking for ideas Post by ljd1963 on Mar 15th, 2004, 9:55am Mia.....Started O2 on Friday....and Ive had 3 realatively peaceful nights.....it really caught em quick. Now ..do u have an O2 tank....or a concentrator.....because if you have a concentrator.....do what I did...just go to sleep with the cannula on..and keep it on...dont even take it off.....kept me for the most part PF for 3 nights..I really hope this works for you..I really really do......sendin Love and lots of it to the both of you...God Bless...Jim aka(Luke) |
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Title: Re: looking for ideas Post by miapet on Mar 15th, 2004, 12:44pm I'm so happy for you!!!! And thank you for the information on concentrator and canula!! We have both a concentrator and tanks, AND they accidently delivered canulas the first go. I'm sure those 3 nights have been a much deserved miracle for you *hugs* Do you also have a non-rebreather mask? (the kind with a bag . . .but don't use the elastic to hold it on) The beast hits every hour if D tries to sleep . . .Jackie suggested Dramamine . . .I need to ask her more information . . .like time, dosage, etc . . . and does it have a rebound effect? Do you do it during cycles within the cycle (since we're chronic)? Anyway . . Jackie? Again . . I'm really happy the o2 is working for you, and that you have been getting to sleep!!! wishing you all the best *positive energy and light* miaper |
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Title: Re: looking for ideas Post by ljd1963 on Mar 16th, 2004, 8:40am 4 nites PF now...just keepin it on when i got to sleep. I have just a cannule...not a rebreather or mask..and this really works great so far for me. Keep positive. Maybe seeya at the convention guys? Luke |
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Title: Re: looking for ideas Post by miapet on Mar 16th, 2004, 9:31am Luke . . what do you have the o2 set at? convention? i haven't even read that thread . . .i would love to meet everyone, and thank y'all first hand for being so supportive and helpful . . . miapet |
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Title: Re: looking for ideas Post by Giovanni on Mar 16th, 2004, 10:44am Look here: http://www.clusterheadaches.org/conventions/2004/index.htm John ;;D |
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Title: Re: looking for ideas Post by miapet on Mar 16th, 2004, 11:11am thanks John *smiles* we won't be able to attend . . .if july is better . . we already have (had) plans to go to the pacific northwest (most of my family lives up there . .and i haven't seen any of them for a couple of years) . . .i wish we could go. i would love meeting everyone. |
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Title: Re: looking for ideas Post by ljd1963 on Mar 16th, 2004, 11:27am My concentrator really only goes to 5..but when they brought it...you can bump it up to a little over 6 lpm...works for me......seeya |
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Title: Re: looking for ideas Post by FZfan on Mar 17th, 2004, 12:24am the concentrator, or even a regular mask at a flow rate of 6-8 will work, but to really knock one down that has a good start you really need the non-rebreather mask with a flow rate of at least 10. And you need to really seal that mask around your face. With a canola or a regular mask you will always get less than 100% oxygen. Aborting will take longer. The faster you oxygenate the blood, the quicker the relief will be. I used to use just a regular mask at flow rate 8. It wasn't near as effective as the non-rebreather at flow rate 10. I was actually startled by how much better the non-rebreather worked. However, if the canola all night is working for you, I certainly wouldn't change it. Maybe it's keeping your blood oxygen high enough through the night to keep the beast at bay. But if you ever get an attack that the canola won't abort, it might be handy to have a high flow regulator and a non-rebreather mask on hand. |
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Title: Re: looking for ideas Post by Luke63 on Mar 17th, 2004, 9:07am Slept with the canula on last nite...PF PF PF!!!! As far as dealing with a hard onset...do what i did the first nite I got one and had the concentrator. I put the damn canula in my mouth pinched my nose shut and di it that way....and i WORKED. Now I dont know how cool that is to do...but whatever works to break the beast down...right? |
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Title: Re: looking for ideas Post by FZfan on Mar 17th, 2004, 2:37pm Actually, sucking on it directly with your nose pinched is a nice, homemade non-rebreather mask. Hell, that's probably easier than what I go through to seal the mask around my face. |
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Title: Re: looking for ideas Post by miapet on Mar 17th, 2004, 8:55pm Luke . . I'm really really happy for you!! FZ . .thank you for your information too! Well, on the plus side . . .h/as are farther apart during the day . . .we are getting anywhere from 3 -5 hours with shadows only (which is WAY BETTER then where we were!) . . .on the down side, night-time still sucks, with every hour being a rude awakening. Laying down in the day equates night schedule, so sleep time is almost non-existent for him still. BUT, we have hope . .and it feels as if this cycle may have peaked? Thanks to everyone . . .you're all truly wonderful people! ms |
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Title: Re: looking for ideas Post by miapet on Mar 19th, 2004, 3:23am well, some more good news . .this has been the best day in weeks!! (months???) . . .shadows only . . . of course, haven't went to bed yet . . . anyway . . .woohoo!!! |
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Title: Re: looking for ideas Post by Luke63 on Mar 20th, 2004, 9:18am Sounds good for the 2 of you. Keep it up. maybe he's slowin down huh? I had anight of hell last nite...I guess O2 doesn't always work. I'm not sure if Im askin stupid questions..maybe I read this but it went in one ear and out the other...typical with my brain like this lately....but has he been to a neuro yet? I just had one on Thursday...and i was prescribed something called Depakote...still seeing if it works for me yet. Stay positive ok? Wishing him PF PF PF!! Luke |
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Title: Re: looking for ideas Post by miapet on Mar 20th, 2004, 1:05pm *hugs* Luke .sorry to hear about your night *frowns* . . .we're back up to every 3 hours . . .we kind of think the o2 has the ha disoriented, which is why the timing is all weird . . we are also hoping it's on the downhill side .. .but who knows? neuros . . yep . .been to a few . . one pretty recently (he's out the month due to his own health issues) . . .but we try to stay away from pharmacy . . the drugs are pretty scary . . .and about 15 years ago . he tried just about all of them . . .be careful with the depakote . . . we are pretty sure that it was the past treatments that have caused the vascular problems we fight now, including high b/p, especially since there in NO family history of it . . . anyway *positive energy and light* |
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Title: Re: looking for ideas Post by FZfan on Mar 20th, 2004, 1:49pm my experience has been that, yes o2 will fail occassionally. Who knows why? The wiley beast always has a few tricks up it's sleeve. I am currently med free, using o2 only. It will be the 5th week of this cycle in a few days, if the beast doesn't go into remission soon. I would say that I'm averaging about 3 or 4 attacks per week that o2 does nothing for. They are always screamers (k9-10) and, curiously, they are always during the day. I've aborted every nighttime attack. I can live with fighting off 3 or 4 attacks/week in return for staying med free. If that average rises, though, I'll be back on the med merry-go-round in a hearbeat. Don't give up on the o2 just because it fails a few times. If it is helping more than it is failing, it is still a good thing. My doc mentioned depakote when we were discussing preventatives I haven't tried yet. I've decided that as long as I'm episodic, I'd rather quit trying preventatives and just slug it out with o2. If my cycles are starting to get longer, though, I'll be back looking at prevents faster than a fart clearing a small room. I have picked up a prescrip for Zomig ZMT. I had minor success with Zomig tabs a few years back, and thought the faster absorption of the ZMT might be worth a try. I don't intend to take it unless I run out of o2, which has happened to me a few times this cycle. I don't like flying solo without a wingman. Let us know what the depakote does for you. Good or bad. miapet - I understand what you mean about the beast being disoriented. I still get my 2am like clockwork, but all the other attacks are much more random than normal and usually of lighter intensity. I also experience more shadows, but they are mostly very minor. I know drugs can be scary. It's good that your trying to fight the battle without them, as I am trying to do right now, but don't let drugs scare you to the point where you won't try them at all. I have no fear of drugs (child of the seventies ;) ) but I do enjoy the lack of side effects of not using them. Right now, oxygen is the thing that is making that possible for me. But o2 has the disadvantage of keeping me pinned down at or near home. When o2 becomes inconvienient, drugs are the only recourse available. Finding the right one, though, is sometimes a seemingly insurmountable challenge. Each time the beast strikes, though, we plod on with the challenge. Sure hope you guys find some relief. Miapet, you are one helluva supporter. |
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Title: Re: looking for ideas Post by Luke63 on Mar 20th, 2004, 2:20pm Hey FZ...good info. Im tryin to keep on the O2...and havent used Imitrex in over a week now...so I guess thats good. I do believe in the O2..but i think If u get too far into a HA..O2 wont even help..so u stick it out. Im like clockwork too...like between 10pm and 11pm. Last nite had 2...got up this morn started all over. enough of me tho. Hey miapet..Ill let ya know about the depakote....only had 2 so far...we'll see. You are right..I really dont wanna be on all the suck-ass drugs either....and u wrote me a message on alternative remedies....where will I find this at? Mia..keep him on the O2 if ya can...disorient the beast...thats good. I am fortunate...my insurance pays 100%..Im lucky. FZ..and mia....keep in touch guys please? Luke |
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Title: Re: looking for ideas Post by FZfan on Mar 20th, 2004, 8:22pm Luke, I am so glad the o2 is working for you, regardless of whatever method is used to achieve the desired results. o2 is a wonderful thing when it works, aint it. Imitrex never worked for me, but I imagine that the relief felt with o2 is similar to the relief felt with the imitrex injections. It's the most wonderful feeling imaginable to a clusterhead. Actually feeling the pain melt away. It's almost a rush. I would even go so far as to describe it as exhilarating. One of the things I've noticed about o2 is that I no longer fear the next h/a. I can actually fall asleep much better now knowing I can kill these things with something that allows me to go back to sleep. So now instead of fearing the next attack, I now fear running out of o2! ;;D Oh well, that seems like a fair fear trade. I'll eventually get insurance to cover some of my costs, I just don't feel like fucking with the paperwork right now and I am fortunate in that I can afford to buy what I need. I'll turn in all my receipts along with my doctor's letter after this cycle has ended and then get a reimbursment check for probably 60%. Used to be 80%, but thanks to corporate greed, I keep paying more and more of my medical costs each year. Anyway, I kinda like doing it this way because, when my cycle has ended, I'll get a nice check to buy myself something with, sort of a reward for making it through another cycle. Keep on suckin' (the o2 that is! ) ;;D |
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Title: Re: looking for ideas Post by miapet on Mar 20th, 2004, 9:25pm Hey guys . . .I agree . .keep up with the o2. We are lucky to have the machine for home . .and bottles with a regulater thingy to haul around . . . unfortunately, this cycle is taking sooooooooo long . .he's exhausted. Oh well, it's going to get better!!! As for not shutting the door on drugs . .it's pretty much going to have to be the last resort . . .years ago, he was a guinea-pig for a famous doc in our area . . .calan, wygane (sp?), verapamil, lithium, depakote, prednisone, imitrex (pill form, there wasn't an ijectable at the time) ummm, lord, the list goes on . . .currently we did a prednisone taper with cafergot . . .worked for a couple days, but they are so close together the 'safe' weekly dosage for cafergot wasn't enough . . .o2 is what we have . . and it works . . .soooooooooo . .. today, we are still at every 3 hours . . .and now it's dark . . .I try to stay up with him . . .last night i was incoherrent *L* I dont know what I was saying, but it made no sense . .and all I could do was laugh *L* shoot, I felt like a kid again (staying up all night to watch scary movies or something) . . . luke . . .i'll message you with the right thread . .. *positive energy and light* i have you in my thoughts . . .working towards p/f for all of you along with D. *smiles* miapet |
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Title: Re: looking for ideas Post by miapet on Mar 21st, 2004, 10:17pm So, I'm almost superstitious . . .do I dare write it down? Today has been a great day!! *YAY* I don't know what it means . . .yet . . . but I really really really hope we are on the downhill . . . You all have shared so much with me . . and helped in a million ways . . .I'm glad to share a good day with you . . .I only hope it has been good for all of you too. miapet |
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Title: Re: looking for ideas Post by FZfan on Mar 21st, 2004, 10:55pm great news mia. glad to hear it. so do you guys think has the cycle been broken? or is it too early to tell? Keeping my fingers crossed for ya. |
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Title: Re: looking for ideas Post by Luke63 on Mar 22nd, 2004, 9:15am I hope you're on the downside...I really...really...really...do!! We're all cheering for the 2 of you. KICK THE BEASTS' ASS!!!!!!!! Luke |
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Title: Re: looking for ideas Post by miapet on Mar 22nd, 2004, 12:53pm Well, the cowardly beast hit us last night . . .3 times between 11:00 pm and 5:00 am . . .today has just been shadows . . . . We are definately working on kicking it's ass (sorry, but by this point, I'm done being nice about the jerk!) . . .and I really believe the 02 has 'it' all disoriented . . . so, we'll keep on keeping on . . . *hugs* *positive energy and light* and pain free energy to all of you too! Thanks for being here for us . . .I told D last night, that this is such a safe place and how supportive everyone is. He hasn't been able to spend time on the computer during this cycle . . .but last night he was able to read through our posts . . .you all gave him some much needed smiles. miapet |
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Title: Re: looking for ideas Post by Luke63 on Mar 22nd, 2004, 6:48pm Anything at all you guys need..let us know..we're here. [smiley=thumbsup.gif] Luke |
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Title: Re: looking for ideas Post by Charlie on Mar 24th, 2004, 3:27pm Glad things are looking up 8) Here is the link to my technique if you haven't looked it over. I hope you have never a reason to use it. http://www.netsync.net/~charlies/ Charlie |
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Title: Re: looking for ideas Post by miapet on Mar 24th, 2004, 9:04pm Charlie. .thanks for sharing the link. actually, in the past, I have done things like that . . .but, I never thought of having D do anything like that. . . The beast hasn't left us . . . I have just had weird work and car issues . . . We are still using o2 . . .still shadowing . . .h/as are mostly at night right now . . . forget laying down . . .his head feels as if it ways 1,000 pounds . . . I know that ANYTHING stressful will bring one on . . .good or bad makes no difference . . .stress does it . . .I hate when I feel as if I add to it . . . I just want to protect him . . . and make it go away . . . |
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Title: Re: looking for ideas Post by miapet on Mar 24th, 2004, 11:21pm This is from D . . .he's dictating as I type: Greetings. First, and foremost, I want to express my sincere appreciation for the care each and every one of you have shown my miapet. It has never been a strong suit of mine as a supportive or in anyway expressing condolences for people, hopefully this is a wake-up call for further improvement on my part. I would like to think I am an agreeable and personable man of good will. It is no defense to suffer from these headaches and not be a gentleman of civility. I will gladly share any knowledge gleaned from the experiences of this affliction of ours. We met a fellow member of this site. After a nice long chat, I realized the value of communicating with others who share clusterheadaches. This young man gave far more than he received in return without any expectations for himself. I can only hope that each of you can meet quality people who know how to establish a rapport and genuinely affect you. We hope to remain members in good standing with this community, and if either of us can do anything for any of you, just let us know. Sincerely, with regards, D |
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Title: Re: looking for ideas Post by miapet on Mar 28th, 2004, 12:07pm We're still here . . .I've been reading and keeping up . . just not posting much . . .D has good days and bad . . .he actually had a couple of days where he only got hit if he tried to lay down or sleep . . . but, he's had 7 since 7:00 yesterday morning . . .pretty good ones too . .. BUT, on the good note: o2 kicks butt! *g* and they are gone in about 7 to 10 minutes . .still too many still too often . . but at least not as long!!! FZ . . .how are you? on the downhill side (I hope!)?? Luke . . and you too? downhill?? (I hope!) *positive energy and light* to everyone *smiles* miapet |
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Title: Re: looking for ideas Post by FZfan on Mar 28th, 2004, 7:12pm Hi mia, sure glad D is getting some help from o2, if nothing else at least there's no side effects, right? I'm pretty sure Luke is still in cycle, but mine ended a week ago. Thanks for asking about us. It was a typical cycle for me, only about 5 weeks. I gotta say that hanging out here has helped make this the easiest cycle to deal with I've ever had. I've mentioned this (the cycle ending) in a couple of other posts, but don't want to make a big deal out of it, plus, I like to wait about a week after the last h/a to be absolutely sure the beast has gone into hibernation. It has now been a week and a day, so next friday I will celebrate with a few beers. Sure wish D's beast would go hibernate. Hope it's soon. Take care you guys. Keep us posted. |
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Title: Re: looking for ideas Post by miapet on Mar 28th, 2004, 9:24pm FZ . .woo hooo!!!! I read (somewhere) that it looked like you were getting relief . . .*smiles* . . .I'm soooo happy for you!!! Thanks for the wishes/vibes . . .we can really use them right now *smiles* miapet |
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Title: Re: looking for ideas Post by miapet on Apr 4th, 2004, 11:42am *YAY* D has been sleeping at night (well, he still stays up late, but he's sleeping (and getting more than me!!) AND, for the first time in more years than we can count . . he hasn't been waking up in the (his) morning with a h/a!!!!!!!!!!!!!!!!! yesterday he had a k1 . . .and he's had shadows . . .but i think (knock on wood) that we may really be on the downhill!! I'm crossing my fingers that we not only break the cycle-with-in-the-cycle, but also the cycle-that-never-ends!!! *HAPPY DANCES* Thank you, everyone, for all of your support, ideas, and vibes!! *positive energy and light* and wishing you all pfnad miapet! |
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Title: Re: looking for ideas Post by FZfan on Apr 4th, 2004, 10:24pm more progress, more good news. Great to hear mia. Hope D just gets better and better. Still pouring on the vibes for you guys. :) |
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Title: Re: looking for ideas Post by miapet on Apr 5th, 2004, 11:41am Thanks FZ . . .I guess I should know better than to say we're doing better . . .as soon as I posted that . ..WHAM . .D got hit with a couple of 8s . . .and some 5s . . .so we're back on watch . . .next time, I'll just say something like, well, we haven't called for more o2 yet .. . Anyway, I'm glad you're still rocking on *g* miapet |
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Title: Re: looking for ideas Post by FZfan on Apr 5th, 2004, 4:54pm DAMMIT! Oh well, I don't believe in jinxes. Gotta go with the flow. 3 steps forward and two steps back is still progress. Still, the stubborness of D's beast is starting to piss me off! Keep up the fight, there's better days ahead. :) |
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Title: Re: looking for ideas Post by Turts on Apr 6th, 2004, 4:05am This is not for everybody, and I am yet to try it yet, simply due to availability: however in response to your original question Quote:
www.clusterbusters.com Turts |
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Title: Re: looking for ideas Post by miapet on Apr 6th, 2004, 8:32am FZ, yeah . . .this one is really pissing me off too . . . D is chronic, so we are used to having a schedule of h/as, but this cycle with-in is getting really old. Turt, thank you for the clusterbusters url. We (D and I) fully support clusterbusters. miapet |
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Title: Re: looking for ideas Post by Dover on Apr 6th, 2004, 9:00am I have had what they call restless leg syndrome for years. It hits me at night and when I travel by car for long distances. Anyway, I asked my doctor for something to help with this as I was going out of town by car and didn't want to deal with another problem on top of the CH. I also wanted it because the one night of sleep that was not interupted by CH was interupted by restless legs. Anyway, he gave me Quinine. This is the stuff in tonic water. Before taking quinine, I was have 2-3 CHs per day in the 7-8 range. Now, I am having 1-2 CHs per day in the 2-4 range. Before starting the Quinine, I was taking 200 mg Imitrex per day and crying out for more. Now, I take 50 mg (half tab) whenever a CH starts crying for attention. One warning, quinine can cause problems for people with heart problems and has some other side effects you should discuss with your doctor. I am not completely sure why this works but for me it does. I suspect that it works for the same reason Botox injections work for some people. Anyway, try it. You can either get a prescription or start out by drinking tonic water. |
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Title: Re: looking for ideas Post by miapet on Apr 6th, 2004, 12:08pm Thanks . . interesting . . .my parents used to take quinine for restless leg . .then the FDA decided you had to have a script for it . . .I'll make the suggestion. miapet |
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