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marfanoidus
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Hello all, this is my first post to the group.
First off, this is an awesome site, and I'm glad I found it and that it is up as a resource for those of us fortunate enough to know what real pain is.
Second, I'm 34 and entering my third cluster episode. The first one started when I was 12 and lasted 10 years until I stopped eating peanuts. The second episode lasted 8 months 3 years ago and quit when I stopped eating hotdogs. I haven't found what (if anything) is causing this round like the other two, but I'm on the prowl for the culprit. MaxALT works great for me (when it works, which is about 70% of the time), and this time the doc prescribed midrin as well. Haven't tried that one before, but my initial research on it doesn't have me too impressed - after all, when you feel that feeling and you know you have about 5 minutes until your universe becomes complete pain, you want to be able to at least believe the pills you swallow have a good chance at aborting the pain. Anyway, I'll let you know how it goes.
Question - has anyone tried fasting for 3-4 days during a cluster spell? Since my previous experiences with CHs were chronic, and I'm pretty certain this one will be also until I find whats causing it, and both immediately ended when I found what was causing them, I would love to know if there has ever been a study of CH sufferers that fasted, not putting anything into their body other than water for a few days, and see if it helps. I think I'll try that starting tomorrow  . Seriously, I will - can't hurt.
For those of you out there with CH, I know what you are going through, and damn damn damn damn damn - I just felt the feeling - 10 minutes til I wish I was dead.
See you all soon.
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Superpain
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Re: hello all
« Reply #1 on: Jun 11th, 2004, 5:29pm » |
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Interesting....
Could you explain the location of the pain, how long it lasts and how many a day do you get?
Your age of onset, length of cycles and remissions, and particularly the peanut and hotdog thing are atypical for cluster's. I've never heard of such a case....
Midrin is pretty much useless when it comes to cluster's... Been there done that, as many other's have, years ago. Midrin is like soooo 80's, dude....
Either read up here and educate yourself and your doc to get effective medications, or change doc's. Or at least seek out a good headache neuro for this particular affliction, and keep your other doc for the flu and stitches and stuff. 
Oh yeah... And welcome to Clusterville!
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| « Last Edit: Jun 11th, 2004, 5:30pm by Superpain » |
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Chris
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marfanoidus
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Re: hello all
« Reply #2 on: Jun 13th, 2004, 3:04pm » |
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The location of the pain is directly behind my left eye, and of course radiates whither it will on that side of the head. I've never had a headache on the right side. The headaches typically last from 30 minutes to 2 hours, and ice on the left side of my head helps a bit (I'm thinking the superficial temporal nerve may receive some numbing effect from this).
The amount of CHs I get varies - for instance yesterday, I had 1 at 2 in the afternoon, and didn't have anymore until last night, when I had 3. Somedays its one or two, somedays its 5 or 6. But the ones in the night come very regularly, where you could almost set a clock by them. Of course, when the CH goes away, only the intense pain goes away - I'm left with a dull pain that occasionally spikes in that 'icepick' feeling through my left temple.
I think you're right about the midrin - I took it once, let me just leave it at that. I do seem to have an overlap with migraine in that MaxALT works (sometimes), but I do have the CH syptoms, like Horner's syndrome that looks like Bell's palsy.
Your advice about potentially looking for a new doc is well received - thanks.
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Superpain
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Re: hello all
« Reply #3 on: Jun 13th, 2004, 5:14pm » |
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Have you tried Oxygen?
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Chris
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Bob_Johnson
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Re: hello all
« Reply #4 on: Jun 14th, 2004, 7:12am » |
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In years of prowling the medical literature I've never seen mention of fasting--but as you say, won't hurt to try.
You suggest a food allergy may be at work. This is an old topic but poorly researched and so there is no reliable evidence one way or another. Your own experience should be followed.
Good results with Maxalt means that continuing with this type of med makes sense. Since there are several of this type available, you may wish to try some other the others to see if you get better response. Imitrex is about 90% effective for clusters because of its fast initial action. Some of the other triptans are better for migraine because of longer life but slower onset.
I've had excellent result aborting clusters with the following. If you want to try it, one or two doses will tell you whether it works for you. Your doc can give you a sample.
1: Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
------------------------------------------------------------------------ --------
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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| « Last Edit: Jun 14th, 2004, 7:13am by Bob_Johnson » |
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marfanoidus
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Re: hello all
« Reply #5 on: Jun 14th, 2004, 12:01pm » |
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Thanks very much for the advice.
I haven't tried oxygen yet - the only agents I've used so far are the MaxALT and Midrin (although I think when I tried midrin that my CH just giggled at its presence).
Well, the fasting did not have any effect. After 48 hours of nothing but distilled water, detox teas, fiber, and some chicken soup, the CH episode continued moving into full steam. I'm up to 5 a day, three of which are in the night hours. And of course, they are worsening - this episode has been building for about 3 weeks, starting ever so slightly, growing in frequency and severity of head pain, and now I think its full-throttle. At least, I hope its full-throttle and not going to get anymore severe in pain.
Most of the time, it doesn't matter what I take for the pain. The MaxALT worked very well during the last episode 3 years ago, but so far this round I have been left writhing mostly until when (I believe) the CH just decides to leave on its own.
I'm going to call my doc and ask him to research some of the medications mentioned on this site, and particularly the Olanzipine.
thanks!
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marfanoidus
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Re: hello all
« Reply #7 on: Jun 16th, 2004, 10:37am » |
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good news!
I decided to go to a nuero, and at the office they have a doctor who only works headaches. She immediately agreed that I had a severe CH cycle starting, and fortunately I began to get a CH while I was in the office. She gave me a nasal imitrex, and it worked fast, well, but the effects were short lived - the CH left and came back within 5 minutes.
Then she gave a concoction injection - I think it had Predisone, Verapimil, and an ergotamine. Most of the pain left within 10 minutes, and by 1.5 hours laters, there was no pain at all. When she gave me the shot, she said she would be surprised if I had anymore CHs.
Thats been 21 hours ago, and I haven't had a CH or even a hint of one yet - not even my 1:40am clockwork demon visitor - whooohooo!
So, I'm on a tapering Prednisone, Verapamil, and ergotamine regimen, and Zomig just in case, and oxygen also. If the first 3 continue to work like the shot did, I'll be plenty happy and wont need the Zomig or O2.
A couple interesting things from that visit:
1) She said oxygen works because at certain levels it becomes a potent vasodilator (you all probably already knew this);
2) She also said that cluster sufferers are born that way, and that our genes dictate that we have them, when we get them, and how severe they are to be. Fortunately, genetic yes, inherited no - thank God.
So, for anyone who may read this, don't sit/writhe in agony - there is help out there that will hopefully work as quickly for you as it has for me.
Good luck.
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floridian
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Glad you found something that works for you.  Your right - why suffer when there are treatments?? One thing the doc said puzzled me:
Quote:| She also said that cluster sufferers are born that way, and that our genes dictate that we have them, when we get them, and how severe they are to be. Fortunately, genetic yes, inherited no - thank God. |
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Genetic yes, inherited no ??? How can it be genetic but not heritable?? It may not be a single gene, as some diseases are, but it does run in families to a degree.
Also, even though it is genetic, our life experience and environment are important for some of us. An unusual number of us had head injury of some sort. Sinus problems are also more common and may aggravate clusters, but they are not the root cause. Stress and sleep disruption have an influence in many of us. The diet and trigger question is an open debate, as Bob suggested. But hotdogs are usually loaded with nitrates and nitrites, which are chemically similar to nitroglycerin. Nitroglycerin is a known trigger that increases nitric oxide. Nitrate and nitrite can also increase nitric oxide and could be a trigger for some of us.
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| « Last Edit: Jun 16th, 2004, 1:01pm by floridian » |
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Superpain
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Re: hello all
« Reply #9 on: Jun 16th, 2004, 3:10pm » |
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on Jun 16th, 2004, 10:37am, marfanoidus wrote:Then she gave a concoction injection - I think it had Predisone, Verapimil, and an ergotamine. Most of the pain left within 10 minutes, and by 1.5 hours laters, there was no pain at all. When she gave me the shot, she said she would be surprised if I had anymore CHs.
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Sounds like a good doc, except for that comment....
I'm not aware of prednisone or verapimil even existing in injectable form... But if they are, 1 shot is not gonna do much for long.
If you can, ask the doc what was in the shot that she gives so much creedence to. We would all be VERY interested to know what it is.
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eyes_afire
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Re: hello all
« Reply #10 on: Jun 16th, 2004, 6:15pm » |
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Hi Marfanoidus. Glad you're getting relief. Welcome aboard.
Quote:Genetic yes, inherited no ??? How can it be genetic but not heritable?? It may not be a single gene, as some diseases are, but it does run in families to a degree.
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My understanding is that a disease can be genetically coded, but not necessarily genetically expressed... i.e. you may have CH and you may pass the genes to your kid, but if your kid doesn't get CH, then the genes are not expressed and therefore the disorder is not inherited. But perhaps I'm misunderstanding what you're saying. I'm not saying that CH is not heritable... I don't know the answer to that question.
--- Steve
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| « Last Edit: Jun 16th, 2004, 6:18pm by eyes_afire » |
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marfanoidus
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Re: hello all
« Reply #11 on: Jun 16th, 2004, 9:12pm » |
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Well, my understanding of her statement about the genetic/inherited issue is based on another disorder I have - Marfan syndrom (thus the my screenname). It is a connective tissue disorder that is definitely genetic, but not necessarily inherited. None of parents/relatives have it, my son didn't get it from me, and thus if it appears in the blood line again it will be an anomaly of sorts since it skipped my son. So I'm thinking it may be the same way with CH. My thinking is that since CH does appear in families, it may be possible that it can be inherited, but not necessarily so and that other causative factors may be at play.
I will ask at my follow-up visit for some clarification on the genetic/inherited issue. But the way she explained it was that the hypothalamus is what controls the organic causation of CH, and that you're just born with it. But like I said, I will get some more info on that.
I will also ask her what was in the shot (I was having a CH at the moment) but whatever it was it definitely worked for me, and it may work for other, so I will find out tomorrow.
Its been a whole day and half - whooohooo! Something is definitely working. Good luck to all.
Here is the website which is basically selling a guidebook on CHs - my doc praised it, although I have no intention of ordering it ($20 for 51 pages, I don't think so), but this is where she garnered her info on the genetic/inherited issue:
http://www.medifocus.com/cluster-headaches-guidebook.php?a=a&assoc=G oTo&keyword=clusterheadache
And as for the shot she gave me - it had depacon and a steroid in it. She gave me the depacon since the imitrex nasal spray didn't work for me.
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| « Last Edit: Jun 17th, 2004, 1:40pm by marfanoidus » |
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Superpain
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Re: hello all
« Reply #12 on: Jun 17th, 2004, 5:43pm » |
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If you've started the prednisone, and you haven't had a headache since, you can probably kiss them goodbye for at least the duration of the taper.
Beware... You are going to get fat! You may break out... Probably gonna get the munchies... And the verapamil IS going to constipate you, especially in conjunction with the pred.
Seriously, I didn't shit for 5 days! 
Eat plenty of fiber! You need to get plenty of pottassium (bannana's are food and full of fiber), and calcium.
Take my advice here or you are gonna get REAL uncomfortable in a few days.
Get some metamucil and/.or drink plenty of smoothies!
You might even want to take a laxative every couple of days for a while.
I know all that sounds funny. 
But it ain't so funny on the 5th day! 
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Prense
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Re: hello all
« Reply #13 on: Jun 18th, 2004, 9:40am » |
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on Jun 16th, 2004, 10:37am, marfanoidus wrote:| She immediately agreed that I had a severe CH cycle starting |
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Is there any other type?
Good luck with your treatment!
Chris
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marfanoidus
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Re: hello all
« Reply #14 on: Jun 18th, 2004, 11:52pm » |
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good point - its hard to think in terms 'mild' when discussing clusters.
As for the warnings about constipation, I think I could live with gut-rot and be ecstatic about not having those blasted CHs.
Although, I'm only on the Prednisone for 9 days. After that, I'll still be on the Caffergot and Verapamil for a month. Maybe this is a regimen that some of you are familiar with, maybe not. Neither I nor my doctor have any intentions of me staying on Prednison for any longer than necessary. So hopefully it won't cause any or at least minimal weight gain.
As for constipation, I will heed your advice and take plenty of fiber.
Also, back to the genetic discussion: I understand that some people had traumatic events which seemed to precipitate their CH episodes. I'm just wondering what some of you think of my following hypothesis:
there are definitely external triggers to CHs, such as flying east/west, and suffering various injuries, or nitrates. However, if flying east/west or being injured or eating hot dogs could cause CHs by themselves, it seems unavoidable that CH should be much, much, much more common than it is. So I'm thinking that maybe the doc was correct in that it is genetic, and that some triggers may indeed set it off in those of us already predisposed to them.
I'll let you all know how my short Pred duration goes.
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Superpain
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Re: hello all
« Reply #15 on: Jun 19th, 2004, 6:18pm » |
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Yes. Somethings are triggers... Nitrates is one. Flying east or west?  Doubtful, but anything is possible.
Alcohol is a sure fire trigger for most.
But when I'm in cycle I get hit so much that "triggers" are moot.
As far as being genetic... I don't know.
I basically look at it like a birth defect.
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| « Last Edit: Jun 19th, 2004, 6:20pm by Superpain » |
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alleyoop
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Re: hello all
« Reply #16 on: Jun 22nd, 2004, 1:54am » |
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Hey Marfanoidus,
Glad to hear of your recent success.
As far as the heredity question goes, I can only relate from personal experience. I can tell you that my neuro really perked up when I told him that I have two younger brothers that suffer from ECH. BTW I'm chronic.
Although I'm new to the site too, I can tell you that I have learned more here in a few days than in years from the doctors. These people will make a real difference in your life!
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Dorothy
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Re: hello all
« Reply #17 on: Jun 25th, 2004, 3:27pm » |
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I've been reading so much on this site that I'm getting a headache! At least I know it's just an "ordinary" one which is easily banished with two Anadins.... I just discovered the site tonight and I'm amazed at how much information I've picked up. Being a veteran ECH sufferer I thought I knew it all, meaning NOTHING WORKS! I feel now though that there are plenty of things I haven't tried and I've also realised how little help I've had over the years since I was 19 (I am now 56) so I'm damn well going to push my GP to get me some more help. I have never been referred to a Consultant Neurologist but I will be soon....
Good wishes to you all and my sympathy, especially to the chronic sufferers - that doesn't bear imagining. At least when I'm crying with the pain I know that there's light at the end of a four week tunnel and then relief for about 18 months. I'm pain-free at the moment having had a terrible episode at Christmas. Glad I discovered this site.
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alleyoop
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Re: hello all
« Reply #18 on: Jun 25th, 2004, 4:20pm » |
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Hi Dorothy,
I can relate to you a lot. Although I've only been suffering since I turned 50(I'm 55 now), I'm chronic so it has truly been a long five yrs. I too, felt like I knew all and had tried all until I found this site. It has been nothing short of a revelation and there are some people on here who will help you more than you can imagine!
Welcome aboard and wishing you PFNAD,
Alley
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Dorothy
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Re: hello all
« Reply #19 on: Jun 25th, 2004, 7:08pm » |
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Hi Alley! I've been crying with laughter reading some of the posts on different topics - although it's really tragic I'm getting mental pictures of all those people who suffer like us crawling around begging for help and wanting to smash their heads in with hammers, etc. I thought I was alone because I didn't know anyone else like me - I felt like I was on an island of pain and although I wouldn't wish it on my worst enemy it does help knowing others can fully understand and sympathise. I wish I had a magic cure I could offer to this site but most of the people know more than me. At least their doctors seem to have tried more than mine. I got desperate at Christmas and sent for the doctor after I'd had four weeks of torture. I was longing to sleep but as soon as I drifted off the pain would wake me up and I was a wreck. When the doctor came he couldn't believe how ill I was, he seemed ashamed. He gave me an injection of pethadine and ordered an oxygen cylinder for me which didn't arrive for 5 days by which time I was just about fading away I was so weak. By the time the correct mask arrived the episode was on its way out anyway so I won't be able to test it until next time.... I'm expecting to be fine for at least another year. Hope you stay ok for a long time and look forward to chatting again soon. Stay well!
Dorothy
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marfanoidus
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Re: hello all
« Reply #20 on: Jun 29th, 2004, 3:22pm » |
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Hey all, thought I would give an update on the success of the medicine regimen I started June 16. It was a combination of Prednisone, Verapamil, and Caffergot.
The prednisone really worked. I was on 30mgs for 3 days, 20mgs for 3 days, 10mgs for 3 days, then I was done with it. On the second day of the lowest dose 'that feeling' started to come back. I've had a thousand CHs, but Friday night (6-25) I had the worst one ever. It was weird in many ways - it was very slow to come on (about an hour), but when the pain started to spike, it did so exponentially and lasted for almost 3 hours (mine usually last an hour and a half). I've writhed before, but this one sent me to the hospital (of course, in transit the beast decided to loosen its grip).
Anyway, the reason I'm giving all these details is because that evening I had officiating training, and did a LOT of sweating that I hadn't done in a long time. So, I began to wonder if that unusual-for-me excercise may have altered the minerals/electrolytes in my system in some way as to make the CH so bad.
Well, Saturday I got that oxygen prescription filled, oh yes I did and don't ask why I didn't already have it filled, I'll tell you - DUMB DUMB DUMB  .
Saturday evening I repeated the training and the sweating, and that night I had several CHs - none as severe as the prior night's, but more than I had ever had in a single night, and the oxygen handled them all.
So - two nights of lots of sweating and two nights of very unusual CH activity.
'hmmmmmm', I thought.
I was still on the verapamil and caffergot, but Sunday morning I decided to take a multivitamin and some extra magnesium, and a nice little dose of salt to boot.
No headaches Sunday afternoon. That was nice, so I repeated mv/mag/salt that evening. Slept through the night. That was REALLY nice !!! Did the same thing Monday morning and evening, and slept through the night again last night. Two nights in a row, no headaches, no insomnia, no waking up - that hasn't happened since I don't know when.
I'm no doctor, but:
Maybe the bad CHs came solely from getting off Prednisone. Maybe my cycle is ending, and these Friday/Saturday night demons were the last hurrah. Maybe the sweating had some influence, maybe not, meaning maybe the mv/mag/salt helped, maybe not. Maybe it was some combination of these and other factors I'm not even aware of.
If there is ever going to be a cure for these damned things, it will only come through culling through oodles and oodles and oodles of information, personal stories, trials and tribulations.
good luck to all.
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Superpain
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Re: hello all
« Reply #21 on: Jun 29th, 2004, 3:40pm » |
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Glad to hear you found some relief.
I'm a firm believer that if you escape a headache, the beast keeps count and he ALWAYS makes up for what he owes you.
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Kris_in_SJ
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Re: hello all
« Reply #22 on: Jun 29th, 2004, 4:30pm » |
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Glad to hear you're better.
When I was in my most recent cycle, the combo of heat and physical activity triggered a HA every time. Had to give up working in my garden for several weeks - a real torture, but nothing like a CH, of course. I would guess dehydration might have been a factor too. Water, water, water!
Hope you stay on the downswing!
Kris
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