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phydeaux
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Bang your head?!?!
« on: Aug 24th, 2004, 12:05am » |
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I've been watching here for a little while, and am curious about the head banging thing. I'll be honest, that has never occured to me. I suffer from severe headache 3 to 4 out of 5 days, taking up to 8/9 Imatrex shots/pills per day before I get home and starting in on the vicodin (most days). The idea of smacking my head into a wall seems like it would only make matters worse...and yet I read that a lot...
And no, the vicodin doesn't really help either. My doctor just referred me to Dr. Raskin at UCSF, anyone have any experience with him they care to share?
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BobG
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Re: Bang your head?!?!
« Reply #1 on: Aug 24th, 2004, 12:27am » |
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Welcome to the board phydeaux. Sorry to hear you're suffering with headaches.
Have to ask, have you been diagnosed with cluster headaches? I ask that because of the amount of Imitrex you're using, I take for granted at work. Do you have head pain attacks at night. Do they wake you? Can you give us more info on your symptoms
If it doesn't help, why the Vicodin?
Head banging? When the pain of the clusters is climbing to the upper kip scale we will do just about anything that might help including banging. Bang with the fist. Bang against a wall. Bang on the floor. But not all of us do that. "Head banging" is a phrase used often here to describe the pain level and doesn't necessarily to be taken literally.
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phydeaux
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Re: Bang your head?!?!
« Reply #2 on: Aug 24th, 2004, 1:43am » |
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Ah. I read a section where it seemed to be literally smacking the head.
Yes, I have been diagnosed with "compound cluster headaches" by a neurologist. I take that amount of Imatrex and no more because he says for my weight more is unsafe. As for the vicodin, it doesnt help in the sense that it doesn't make the pain go away, but sometimes it makes it better. The doc says I should go to the ER and get Demerol shots, but I've been concerned about getting addicted, as I feel that I would be there several times a week. Just today (by way of coincidence) my doc convinced me I'm being a fool. OK. Next time, I'll go. It will be very soon, I'm sure.
Let's see, symptoms. Well, yes, I often get woken up with severe pain. I normally have headache pain for 5 to 7 days, followed by 1 to 3 days off. Lately, the days off are less and farther apart. I often wake up (in the morning) with a mild to severe headache. I currently miss an entire nights sleep (or only get 1-2 hours of sleep) due to pain 2-3 days per cycle. I have a few "common" (for me) types.
a. The All Over. This one is exactly that, all over the entire head. Intense, severe pressure all over with spikes. Spikes in the eyes. Colored blobs in the vision. Intense nausea, often with dizziness. Heart palpitations. Nothing eases this one.
b. The Spike. Normally in the front left or right quarters, but sometimes in the reat top quarter of the head. Like a single, red hot spike has been driven all the way to the center of my head. Usually this one makes me quite lethargic. I can often count on this following the All Over. Sometimes eased by high doses of Imatrex with vicodin.
c. The Pad This one is like a pad of pressure on part of my head. Quite painfull, but Imatrex normally gets this one out of the way after awhile.
d. The Eye Spike Just a sharp spike in the eye. White blobs in the vision, sparkles in the vision, often with tunnel vision. Light sensitivity common with this one as well. If I get Imatrex in fast enough, I'll be OK with this one, but if not, I'm screwed. Normally accompanied with the Pad.
e. The Band Bands of pressure around the head. Not necessarily at the temples. Often quickly accompanied by the Spike, the Pad and the Eye Spike. Also causes nausea. High doses of Imatrex sometimes help.
I'm currently taking 1200mg Neurontin, and 50 mg Topomax daily. I use 100mg Imatrex pills and 6mg shots. I've been tested for food allergies, had CAT and MRI scans. I've done acupressure, massage, and counseling for stress.
And in spite of it all, I'm blessed with an extremely wonderful and understanding wife who works with me through it all and supports me. She goes to my doctors visits with me and tries to understand what it's all about, and that I'm not really ALWAYS an a**, it's just The Beast coming out. How lucky I am indeed for that.
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BobG
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Re: Bang your head?!?!
« Reply #3 on: Aug 24th, 2004, 2:01am » |
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on Aug 24th, 2004, 1:43am, phydeaux wrote:Ah. I read a section where it seemed to be literally smacking the head.
Yes, I have been diagnosed with "compound cluster headaches" compound? I've never heard that phrase before. by a neurologist. I take that amount of Imatrex and no more because he says for my weight more is unsafe. As for the vicodin, it doesnt help in the sense that it doesn't make the pain go away, but sometimes it makes it better. The doc says I should go to the ER and get Demerol shots, I think you should find a different doctor. Pain killers usually do not work on cluster headaches but I've been concerned about getting addicted, Glad to hear that as I feel that I would be there several times a week. Just today (by way of coincidence) my doc convinced me I'm being a fool. OK. Next time, I'll go. It will be very soon, I'm sure.
Let's see, symptoms. Well, yes, I often get woken up with severe pain. I normally have headache pain for 5 to 7 days, Is the pain constant all day or do you mean pain off and on each day? followed by 1 to 3 days off. Lately, the days off are less and farther apart. I often wake up (in the morning) with a mild to severe headache. I currently miss an entire nights sleep (or only get 1-2 hours of sleep) due to pain 2-3 days per cycle. I have a few "common" (for me) types.
a. The All Over. This one is exactly that, all over the entire head. Intense, severe pressure all over with spikes. Spikes in the eyes. Colored blobs in the vision. Intense nausea, often with dizziness. Heart palpitations. Nothing eases this one. This is not clusters IMHO. Sounds like migraines
b. The Spike. Normally in the front left or right quarters, but sometimes in the reat top quarter of the head. This does not sound like clusters. Like a single, red hot spike has been driven all the way to the center of my head. Usually this one makes me quite lethargic. I can often count on this following the All Over. Sometimes eased by high doses high doses? Clusters are usually stopped within a few minutes with a 6mg shot or less of Imatrex with vicodin.
c. The Pad This one is like a pad of pressure on part of my head. Quite painfull, but Imatrex normally gets this one out of the way after awhile. This does not sound like clusters.
d. The Eye Spike Just a sharp spike in the eye. White blobs in the vision, sparkles in the vision, often with tunnel vision. Light sensitivity common with this one as well. If I get Imatrex in fast enough, I'll be OK with this one, but if not, I'm screwed. Normally accompanied with the Pad. This does not sound like clusters
e. The Band Bands of pressure around the head. Not necessarily at the temples. Often quickly accompanied by the Spike, the Pad and the Eye Spike. Also causes nausea. Migraines? High doses of Imatrex sometimes help.
I'm currently taking 1200mg Neurontin, and 50 mg Topomax daily. I use 100mg Imatrex pills and 6mg shots. I've been tested for food allergies, had CAT and MRI scans. I've done acupressure, massage, and counseling for stress.
And in spite of it all, I'm blessed with an extremely wonderful and understanding wife who works with me through it all and supports me. She goes to my doctors visits with me and tries to understand what it's all about, and that I'm not really ALWAYS an a**, it's just The Beast coming out. How lucky I am indeed for that.I agree about the wife being wonderful |
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I'm not a doctor and the above is only my opinion. Cluster headaches differ somewhat from person to person. I have to log off now but I'm sure someone else will be here soon to carry on with this string.
Good luck finding a solution to your pain.
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phydeaux
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Re: Bang your head?!?!
« Reply #4 on: Aug 24th, 2004, 2:37am » |
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on Aug 24th, 2004, 2:01am, BobG wrote:
I'm not a doctor and the above is only my opinion. Cluster headaches differ somewhat from person to person. I have to log off now but I'm sure someone else will be here soon to carry on with this string.
Good luck finding a solution to your pain. |
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Thanks. I do get migraine headaches, and I do get cluster headaches. I normally can tell the difference by how effective the meds are, and by my ability to move. If I'm nauseated, it's normally a migraine. However, the spike in the head is not responsive to Imatrex. And my current doc is referring me to another, as he states that my headaches are not responding to normal therapy.
Heh. Normal.
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pubgirl
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phydeaux
I'm with Bob G on this as well.
I have heard of compound headaches (i.e. suffering from more than one headache type) but never compound clusters.
I also agree with him that many/most of your symptoms suggest other headaches entirely.
Couple of questions if I may?
How long does "The Pick" last?
Do you take 8/9 doses of Imitrex on a regular basis?
Wendy
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synergy
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Re: Bang your head?!?!
« Reply #6 on: Aug 24th, 2004, 9:39am » |
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Doesnt sound much like clusters to me either hun. Sorry that you are suffering through this though and i can only suggest that you change GP's and/or get a neuro's advice.
If it turns out not to be clusters (which i dont think it is) then thank your lucky stars as your headaches may have a cure or effective treatment!
Good luck and keep posting!
luv sarah and marc xx
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phydeaux
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Re: Bang your head?!?!
« Reply #7 on: Aug 24th, 2004, 10:27am » |
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The point I'm really trying to make is that I actually get several types of headches. I get the sharp icepick/railroad spike in the head cluster headache that seems to be typical from what I read here, in addition to all the above. This happens 5 or 6 times per day, and happens most every day. I rarely go more than 3 days without any headaches of any kind at all. This is what my doc means by compund, he uses that term to include all the different types of fun I'm having.
I don't have pupil dilation before an attack, but drooping eyelid often occurs. I do get the watering eye.
The Imatrex is somewhat effective, although I would not say it is the end all and be all of pain relief for me.
I'm sorry that I wasn't more clear. I really should have been more specific in what I was trying to say. At this point, I pretty much have some sory of headache going almost every minute of every day.
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phydeaux
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Re: Bang your head?!?!
« Reply #8 on: Aug 24th, 2004, 10:37am » |
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on Aug 24th, 2004, 2:45am, pubgirl wrote:phydeaux
I'm with Bob G on this as well.
I have heard of compound headaches (i.e. suffering from more than one headache type) but never compound clusters.
I also agree with him that many/most of your symptoms suggest other headaches entirely.
Couple of questions if I may?
How long does "The Pick" last?
Do you take 8/9 doses of Imitrex on a regular basis?
Wendy |
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Heh, never answered er question. The Pick can last for hours. If I can get Imatrex in right when it starts, it seems to be more effective. If I cant for whatever reason, it seems to be less effective, although it does help.
And yes, I take 8 to 9 doses on a regular basis. Quite often by 9 or 10 am a headache will start. I will try aspirin first normally, to try and forstall a possible rebound headach if the day before was a bad one. But if the symptoms fit, I'll take the imatrex. And just like chips, you can't have just one!
On a bad day, nothing works. Last sunday, maxed out on imatrex, over 6 vicodin (in hopes of being knocked out, and still up and in pain) walking the hall downstairs till 5 am crying cause it freaking hurt.
But you already know all about that.
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pubgirl
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phydeaux
I can't say this too strongly, you are playing with your life taking this many drugs. Overdosing on Imitrex (which is what you are doing) can kill you and you are adding a habit forming analgesic to this. Honestly this is bad news.
You need to see a good neurologist who specialises in headache conditions as fast as possible, get a proper diagnosis and some preventative drugs as well as ones which stop the headaches you have.
I am still unconvinced it is CH so am not going to suggest WHAT drugs to consider.
Also if you have been taking Vicodin for a while, you need to taper off as there can be bad withdrawal from it if you stop suddenly.
Sorry I can't help you more, but please heed the warnings, we have already had a couple of very dangerous situations here with triptan overuse, and I would hate to see you being the next one
Wendy
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Tom K
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Re: Bang your head?!?!
« Reply #10 on: Aug 24th, 2004, 2:04pm » |
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Sorry to hear about your pain, like everyone else has said. Vicodin? That helps start a cycle of clusters with me. I say away from that like it is the plague. And I did the ER/Demerol thing...it worked for about 2 hours. Then I woke up with a CH and couldn't move or take anything for 22 hours. Watch your Trex intake, it is easy to go over if you don't watch it. See if your GP or Neuro can write you a script for the vials so you can "customize" your doseage. I wouldn't go over 6mg per shot if it was me. I am currently at 3mg per shot and doing fine when I need them.
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don
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Quote:| taking up to 8/9 Imatrex shots/pills per day |
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You are combining the shots with the pills?
Never heard of any doctor recommending that.
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phydeaux
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Re: Bang your head?!?!
« Reply #12 on: Aug 24th, 2004, 3:46pm » |
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on Aug 24th, 2004, 1:06pm, pubgirl wrote:phydeaux
I can't say this too strongly, you are playing with your life taking this many drugs. Overdosing on Imitrex (which is what you are doing) can kill you and you are adding a habit forming analgesic to this. Honestly this is bad news.
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I agree. And my current doc says I am at my limit, and he agrees that this is an unhealthy place to be.
on Aug 24th, 2004, 1:06pm, pubgirl wrote:
You need to see a good neurologist who specialises in headache conditions as fast as possible, get a proper diagnosis and some preventative drugs as well as ones which stop the headaches you have. |
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And again, my doc and I agree. He has referred me to a Dr. Raskin (not sure of the name, up at UCSF) who is a specialist in headaches. Waiting for an appt.
on Aug 24th, 2004, 1:06pm, pubgirl wrote:
I am still unconvinced it is CH so am not going to suggest WHAT drugs to consider.
Also if you have been taking Vicodin for a while, you need to taper off as there can be bad withdrawal from it if you stop suddenly. |
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And this is a constant topic of discussion that my doc and I have. He assures me I am not addicted. I'm not sure what addicted feels like. I know I don't want to be, and take as little as I can. I don't take what I dont need, whether it's Imatrex or vicodin. But some days, I take so much of each, that afterwards I worry. During, I only want it all to end, whatever it takes.
on Aug 24th, 2004, 1:06pm, pubgirl wrote:
Sorry I can't help you more, but please heed the warnings, we have already had a couple of very dangerous situations here with triptan overuse, and I would hate to see you being the next one
Wendy |
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Thanks you for the concern. I've seen the discussions, and other sites with the warnings and effects. Not something I care to experience myself.
But when it provides relief even sometimes, I have to try, right? What else is there to do until the doctors get it right?
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pubgirl
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My opinion for what it's worth (not being a doctor)
Only while you wait for your appointment and diagnosis of course!:
02 therapy to abort + only 2 Imitrex per 24 hours if the 02 fails
Indomethacin therapeutic trial to see if you can end some of the shorter lived attacks and aid the diagnosis process.
No point suggesting any preventive drugs as they are all different depending what headache type we are talking about.
No other drugs, no "painkillers", OTC drugs, narcotics, alcohol etc
Can explain the reasons behind this if you would like
Wendy
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| « Last Edit: Aug 24th, 2004, 5:24pm by pubgirl » |
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mynm156
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Re: Bang your head?!?!
« Reply #14 on: Aug 24th, 2004, 6:24pm » |
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Welcome !!!!
Sounds like a drag man but I have to agree these dont seem to sound much like Clusters. You may have them a other s too. Which I will repeat DRAG!!!
Good Vibes Baby!!!
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Re: Bang your head?!?!
« Reply #15 on: Aug 24th, 2004, 8:32pm » |
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Hi Phydeaux,
I won't lecture because it's all been said already. I can't imagine how awful it must be to have several different types of headaches - having just clusters alone is enough to make one crazy!
I certainly wish you luck with your new neuro consult. It doesn't sound to me like your current doc knows what he/she is doing.
If you have to do the ER thing, Pubgirl had it right .... skip the Demeral and beg for 02 - 15L though a non-rebreather mask. If you're having a cluster, you'll most likely get rapid relief. If you're not having a cluster, it won't hurt you.
Demerol will first give you a hangover, and then give you a rebound HA.
Hugs and many wishes for PFDAN!
Kris
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phydeaux
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Re: Bang your head?!?!
« Reply #16 on: Aug 24th, 2004, 10:52pm » |
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One other questions if I may. On those (rare but oh so pleasurable) pain free days, I find my self quite tired. Almost to the point of exhaustion. Anyone else get this? I enjoy the day without any headaches, but certainly feel worn out.
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Ronny
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Re: Bang your head?!?!
« Reply #17 on: Aug 25th, 2004, 4:02am » |
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on Aug 24th, 2004, 10:52pm, phydeaux wrote:| One other questions if I may. On those (rare but oh so pleasurable) pain free days, I find my self quite tired. Almost to the point of exhaustion. Anyone else get this? I enjoy the day without any headaches, but certainly feel worn out. |
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Oh yes, these HA take the life out of ya, sometimes i walk around like a zombie, almost no sleep at night, and after an attack, i fall asleep from exhaustion.
Ronny.
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