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losthill
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Losthill story
« on: Feb 4th, 2003, 6:59pm » |
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My story.....
The pain started maybe 12-15 years ago in my early 20's. It has remained in the same place over the years. Stretchs from the lower right side of my neck all the way up and over to my right eye. My right eyelid has been droppy since these attacks started years ago. Never have I had pain on the left side of my head.
In the beginning I was getting these maybe a few times per month and over year it has increased to daily. I do remember years ago lying in total darkness and silence to help the pain. That has not worked in sometime now and when they are full blown and nothing is working, all I can do is pace and wait them out.
Last one was very bad and having to make a 3 hour drive early in the morning and play later that evening (in a loud band), I went to the hospital. They gave me a shot of morphine that was totally worthless and a waste of money.
I really dont remember all the medication my doctor has given me over the years, but I would remember them by name if I heard them. I remember trying names like, and my spelling will be wrong, Depekote, Pamalor, Neurontin. All of these and others over the years he perscribed for me to take daily to prevent attacks. They did not work. After my doc ruled these out as migraines he feels they sound more like Cluster's
All that has worked is Immitrex. My father suggested I try Excedrin Mirgaine a couple years ago and I have uses this since. If I take it at the right time, it usually stops the attack from coming on. Recently I am taking double doses often. I stopped the Imitrex because of the hassle I had to do to get it. Excedrin was an easy to get OTC.
I dont know what else to say and my original intention was to see if anyone else was treating there pain with Excedrin and have some type of Cluster.
I am sure I am getting rebound headaches daily. I guess I feel that if I know what I have, I may have a better shot at treating it.
The "hybrid" or combo theory Nancy spoke of in my first post seems to be the most logical at this point.
The quiz shows that I am borderline Cluster as well.
One other thing I tried a few years ago was Chiropractic work. Everytime I felt it come on, I would go in...didnt help.
I will probably modify this as I think of more....
Thanks.....
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jonny
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Margi
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Re: Losthill story
« Reply #2 on: Feb 4th, 2003, 7:15pm » |
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Thanks for doing this in a calmer manner, Losthill. It really is the only way we can help you here.
Sounds to me like you maybe used to have migraines if being still and in a dark place helped you. The one thing that makes me question if you have clusters is you saying you had an attack while doing a 3 hour drive, then playing in a band later that night. Cluster attacks don't last that long. And, having seen my husband go through, what, a thousand attacks in the time we've been together, there is NO way he'd be able to function enough to either drive that long OR go into a public forum to play an instrument.
My advice to you would be to check out the recommended doctors on the OUCH website, find one near you and get yourself in there for a proper diagnosis. AND, schedule an MRI soon. Better safe than sorry. We're certainly not doctors here, but we do intimately understand what a true cluster attack looks and feels like. Yours just don't fit inside that box. I know there's some controversy right now about thinking outside of that box, but true cluster headaches ARE very rare, with the edges of the box clearly defined.
Hope this helps you some....again, get a professional diagnosis. Don't antagonize yourself anymore by getting into a pissing match on the internet about your pain. We could all be slimy little aliens who have learned how to use a keyboard for all you know! This is your health you're talking about. Take it seriously, and make yourself a promise to get it fixed.
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cootie
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Re: Losthill story
« Reply #3 on: Feb 4th, 2003, 7:18pm » |
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sounds like clusters in a way......but if Excederin works I'm gonna take up stock in that company.....I have nothing of value to say.................Pam 
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| « Last Edit: Feb 4th, 2003, 7:21pm by cootie » |
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jonny
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HONK!!!!!
..................................jonny
BTW: just so everyone knows in not starting shit look at the bottom of Cuuties post, TY
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| « Last Edit: Feb 4th, 2003, 7:30pm by jonny » |
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suzy617
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Re: Losthill story
« Reply #5 on: Feb 4th, 2003, 7:41pm » |
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Hi Losthill,
I never tried excedrin but for many years used 4 or 5 advils each time and thought it was just taking an hour for them to kick in but turned out it was just the CH ending and the advil did absolutely nothing.
Part of what you say sounds like CH but some sounds like migraines. I say whatever helps you, stick with it.
suzy
(honk)
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cootie
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Re: Losthill story
« Reply #6 on: Feb 4th, 2003, 7:45pm » |
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Lotta "honkers" out there.....kewl.......HONK !! Pam 
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jonny
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Cuutie,
You do know that you started another one?
STFU
ILYG
Ya hear me?
Honk
Only family will read it right.
HONK ;D
................................jonny
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kim
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Re: Losthill story
« Reply #8 on: Feb 4th, 2003, 8:01pm » |
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Hi Lot,
When I first began having cluster episodes, I would go to the nurse in school and she would put me on the "COT" in the "DARK". I remained there until the attack ended. No one knew the SCREAMING that went on inside of me. So, your experiences don't sound so screwy to me. As time went on, the attacks got more frequent and I became more agitated. What happened? My parents thought I was trying to get out of school and I became increasingly more agitated and aggressive throughout the attacks. Afterwards I was exhausted and confused. DOES THIS SOUND AT ALL FAMILIAR????????????????
Can't speak for others, but I was raised to suffer in silence. So, for a long time I did. I did what the fucking doctors told me to do. I took the friggin pills they gave me. I can remember taking so many extra strength excedrin + coffee that it's a miracle my stomach is not shot to hell.
What I can positively share with you is this: There will come a time when YOU are READY to find the answers. My story began a long time ago when there was NOTHING to HELP. I would not ever give you mistrust or dubious response to issues I have not full background knowledge of. I did lay in silence with a cluster attack OVER AND OVER again. I was 13 years old and big people told me that's what I was supposed to do.
I am a long=time episodic cluster sufferer. It is not my job to diagnose you. It is my ever-so-thankful opportunity to offer you the information that so many good folks have worked so hard to provide for all of us. I wish you the best of luck and hope things iron out for you.
Kim
PFDAN (you know what that means now. - so carry on!!! 
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Marc
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Re: Losthill story
« Reply #9 on: Feb 4th, 2003, 8:22pm » |
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Ditto to Margi's post!!
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losthill
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Re: Losthill story
« Reply #10 on: Feb 4th, 2003, 9:04pm » |
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Margi-
I did not have any idea how long the attack would last and I have not had one like that in years....It was before I learned how long they last in here.
It happened at night and my drive was the next day so I did not drive with it.
I have had 2 MRI's over the years and they came out fine.
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Suzi-
I hear ya on the pills....yes they usually do work, but what they are doing to my insides is what has me searching.
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Kim-
Thank you for sharing and your kind words. I can definitly relate to some of what your saying.
----------------------------------------------------------------------
Here is something I forgot to mention and it may sounds pretty whack.
Behind my lower head I have a bump/knot. It feels like half of a jawbreaker sticking out of my skull. I did not have it as a child but I can remember having this as far back as high school.
My wife was taking to a lady a couple years ago that specializes in some type of body healing and they started to talk about my headaches. The woman asked if I had bump on the back of my head. When my wife said "yes" the lady asked if I played sports and specifically asked if I played football in high-school. Well I did play high-school football and she says that the knot sounds like a injury that some people get from head contact sports like that and can sometimes cause headaches later in life.
I had a manager a year ago that suffers from what he thinks are migraines once a quarter, so just for the sake of lunch conversation and knowing he used to play for the Dolphins, I asked him if he has this knot behind his head. His eyes lit up and said that he does!
Kind of interesting huh, and before any of you comedians reply, I will beat you to it....any other knotheads in here?
LH 
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Jarvis
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Re: Losthill story
« Reply #11 on: Feb 4th, 2003, 9:28pm » |
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Hi lost. When you do get your headaches how long do they last? ...... I will disagree with margi on the time span as they can last for 3 hrs plus. .....Generally as I am sure you have read an attack will last under 2 hrs. To me your symptoms are much like clusters, but again generally the pain is very intense and tends to be more localized around the eye or temple.. I have experienced what I call a burning sensation that will run to my neck and consume the whole side of my face when hit hard..... . There are varying levels of pain experienced by sufferers as well. See if you can put yours on the kip scale to the left.... As Margi stated seldom can we sit still when hit with say a Kip 5 and up... Your having to pace to get thru it is a very classic reaction for most... . .. ... I am not a doc by any means.. I have had the misfortune to have suffered for many years however. Most of the meds taken on this site have never worked for me to any great extent. Except prednisone at a high dose but I am worse when its gone.. I am allways hesitant to say all here cause I've never tried the shrooms for a CH bout. Tylenol, advil, aspirin, all seem to make things worse. And believe me in the past I have taken 10 time the reccomend doses..... . One other thing, Generally we get roused from a sound sleep with the pain and are often hit much harder when relaxed. Though everybodys interpretration of pain is different the consensus says they hurt like hell. Perhaps that is a gross understatement.
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Jarvis
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Re: Losthill story
« Reply #12 on: Feb 4th, 2003, 9:32pm » |
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The lump in the neck is fairly common
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cootie
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Re: Losthill story
« Reply #13 on: Feb 4th, 2003, 9:52pm » |
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Try this web page link....it has some interesting facts or ideas and info (whatever) with your HA's and trigger points and sore spots......Pam
http://www.fibrodoc.org/headache.htm
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| « Last Edit: Feb 4th, 2003, 9:53pm by cootie » |
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losthill
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Re: Losthill story
« Reply #14 on: Feb 4th, 2003, 10:17pm » |
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Jarvis!
>generally the pain is very intense and tends to be more localized around the eye or temple.. I have experienced what I call a burning sensation that will run to my neck and consume the whole side of my face when hit hard<
Yes!!!! that burning sensation is exactly what I feel. Sometimes I will take the tip of my thumb and press as hard as I can just above my right eye on the bone for a bit of relief. Although I will say it seems like the headquarters for these attacks is right below the back of my skull where it connects to my neck, slightly to the right. That is where I find myself putting pressure constantly and massaging.
I will say I think I need to let one of these take there nasty course here soon so I can really pay attention to how it comes on, how it feels at its worst and how long it lasts.
Like I said, most times the Excedrin works and the few times it doesnt are far and few between.
What worries me is the effect Execdrine is having on me long term AND what will happen when it stops working. My father has suffered for years from tension headaches and massive doses of Cafergot over the years about did him in. He insists I have rebounds daily from the Excedrin and it will stop working eventually.
He uses meditation today and Excedrin sometimes but our headaches are not the same.....so....
Thanks for you feedback....
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Karla
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Re: Losthill story
« Reply #15 on: Feb 4th, 2003, 10:18pm » |
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Losthill, welcome and hope you find some usefull information to help you. HONK Honk HoNk
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Karla
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cootie
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Re: Losthill story
« Reply #16 on: Feb 4th, 2003, 10:23pm » |
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LMFAO with the honkin.....Pam ;D ;D ;D ;D ;D ;D
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Jarvis
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Re: Losthill story
« Reply #17 on: Feb 4th, 2003, 10:57pm » |
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I think your going to find that the excedrin does nothing. It just seems that way as the CH is probably just gone away by the time excedrin kicks in.... Ueli and others stated this in the other post..If excedrin really does do the job you will be the first I have heard of that it works for with clusters. CH can be gone as fast as it comes..... I and many others here know what you mean about the feeling at the base of the skull. Feels like your blood hurts. I think this is a symptom and not an instigator. When pressing on the bone as you say your actually compressing the nerve that is aggravated by these things. You can see that on the ouch sight. Good docs are near you and can be found in the buttons to the left........ Hope you become foundhill.
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athos
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Re: Losthill story
« Reply #18 on: Feb 5th, 2003, 1:10am » |
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Losthill.... When is your apt with the Neuro?
Others.... BTW Showing my ignorance.. what is the HONK thing?
Athos
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kissmyglass
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Re: Losthill story
« Reply #19 on: Feb 5th, 2003, 1:35am » |
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Hope you become pain free Lost.....Excedrin Don't work for me...Neither do narcotics....Doesn't touch the pain at all......Hoping to get O2 & imitrex tomorrow.....
Honk....
Kev C
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suzy617
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Re: Losthill story
« Reply #20 on: Feb 5th, 2003, 3:03am » |
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Losthill,
As most would say that OTC stuff doesnt help and its usually just the HA going away that you assume is the excedrine kicking in, I'm curious, have you ever tried going thru the HA without taking it? Do you see any difference in the length or severity of the HA? Thats what I did, I stopped taking all those advils and realized it was still the same pain and duration. The advils were more like a comfort zone to me.
suzy
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cathy
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Re: Losthill story
« Reply #21 on: Feb 5th, 2003, 6:30am » |
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HONK!!!
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Opus
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Re: Losthill story
« Reply #22 on: Feb 5th, 2003, 7:18am » |
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Lost,
Here is a little more information.
From http://www.clusterheadache.org/library/general/ch_general.htm
The cluster-migraine syndrome is diagnosed when elements of migraine headache occur simultaneously in patients suffering with cluster headache. Solomon and Kappa[111] instituted arbitrary diagnostic criteria to establish the diagnosis of this uncommon syndrome. According to their criteria, the diagnosis of cluster-migraine syndrome was given to patients who had symptoms of one headache predominantly (either migraine or cluster), but in whom four or five features of the other headache also were present. Patients who experienced cluster headache with nausea, vomiting, photophobia, or phonophobia would receive this diagnosis, as would patients with migraine who experienced ipsilateral autonomic features. The criteria employed by Solomon and Kappa[111] were not precise; the required number of associated symptoms was picked arbitrarily. Other clinicians have reported patients with two distinct headache disorders. Graham[34] described patients who suffered from recurrent bouts of migraine headaches that recurred daily for days or weeks at a time, then entered a period of pain-free remissions. It is important to recognize the cluster-migraine syndrome because of the unique treatment strategies that need to be implemented. Patients suffering from this syndrome have been reported to respond to inhalation of 100% oxygen as an abortive strategy for acute attacks and lithium carbonate as prevention. This combination would not be expected to be helpful in patients suffering from typical migraine. Alternatively, beta-blockers occasionally may help in this syndrome, whereas these agents would not be useful in the treatment of cluster headaches.
PFDAN to all,
Opus
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Margi
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Re: Losthill story
« Reply #23 on: Feb 5th, 2003, 9:25am » |
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Those lumps on the backs of your neck, base of the skull are what we call 'cluster bumps'. They're just ganglion lumps and 99.9% benign. When my husband is in cycle, that lump becomes enlarged and he can't touch it during an attack, or the pain will escalate severely. It stays there even when he's out of cycle, but it doesn't cause him any pain or problems. It's about the size of a quarter. Very common in clusterheads.
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SFChris
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Losthill - welcome. I hope you don't have to become one of the family, but you do have some of the telltale signs. I also get the cluster bump. It is noticable only when I am in cycle. Before this past cycle, I never knew it was there.
By the way cootie - I can honk 4 times my self...actually, only two and a half times since I am in the process of having two tatts removed (laser blasted). 
Chris
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