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Topic: new to site, couple ?'s (Read 4948 times) |
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hockeyhead
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new to site, couple ?'s
« on: Dec 25th, 2005, 11:23pm » |
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I've suffered from ch for just over 10 yrs. ..been on Verapamil and get clusters for a few weeks about once a yr. Prednisone helps along with Imitrex during a cluster.
I currently have a cluster that wont seem to go away...about 2 1/2 months in. Just went to Neuro and started Topamax and have an MRI next wk.
Here's the ? Anyone ever have a tooth problem, like a wisdom tooth that was supposed to be pulled, cause ch? Will something like this show up on the MRI? I have a strange taste and feeling on the same side as my headache eye. Thought it might be related, but didnt want the dentist to kick my butt unless he has to.
Thanks for any feedback.
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Sean_C
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Re: new to site, couple ?'s
« Reply #1 on: Dec 25th, 2005, 11:36pm » |
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Not an unusual question Hock, alot of people here pulled all thier teethe years ago before the docs knew much about CH in hopes that the pain/clusters would go away. I had my wisdom teeth pulled but still got clusters. Unfortunately its not the link.
Dopomax is a tough med to use, I wish you luck with that. Has your doc tried any of the other meds like Verapamil with Lithium? Lots have found relief with that cocktail combo. There's also Oxygen, do some reading if you can on the meds board, lots of great info and people here. Don't be afraid to ask questions if you need any help.
Cheers.
Sean....................................
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| « Last Edit: Dec 25th, 2005, 11:41pm by Sean_C » |
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BobG
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Re: new to site, couple ?'s
« Reply #2 on: Dec 25th, 2005, 11:52pm » |
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A few years after my clusters started I had all 4 wisdom teeth removed, because my teeth were crooked, not to try to stop CH. I had not even been diagnosed with clusters yet. My dentist knew about my headaches and told me the teeth had nothing to do with the attacks.
It did not stop the attacks nor make them worse.
Many people here have reported having teeth removed hoping to relieve the clusterpain. Did not help. Just down the message list is a title "Dental Work and CH". You might want to read that.
Welcome to the board hockeyhead. Sorry you had a reason to come looking for us.
Have you had a CAT scan or MRI yet? It may show nothing and can rule out many things.
About the taste.....over on page 2 of this section is a title "Strange oders during CH hits". Since smell and taste are related maybe there is something to be learned.
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| « Last Edit: Dec 25th, 2005, 11:54pm by BobG » |
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hockeyhead
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Re: new to site, couple ?'s
« Reply #3 on: Dec 26th, 2005, 12:02am » |
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Thanks Sean & Bob
I haven't even heard of the O2 until reading this site, or mixing litium with the verapamil. I've great success for years with Verapamil until this current cycle. Pardon the ignorance, but is the O2 like the large tank type of deal, or something more portable?
On a side note, i've been on Topamax for a week without any side effects, but it hasn't stopped the headaches yet either. It seems like a lot of people on the site have had issues with it. The doc seemed to like it, but maybe it's the sales pitch. Has it worked for anyone?
This cycle better kick by New Years, cause I need a drink!!
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| « Last Edit: Dec 26th, 2005, 12:29am by hockeyhead » |
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BobG
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Re: new to site, couple ?'s
« Reply #4 on: Dec 26th, 2005, 1:30am » |
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On the left side of your screen is an 'oxygen info' button.
Lots of good stuff there. Your tanks need not be big ones. Save those for home. O2 tanks come in small sizes that are portable.
Many folks have tried the Topomax. Some with success and some without. But, many refer to it as Dopeymax. It might screw with you mind. Be careful.
A drink for New Years? If you're in a cluster now it might be a good idea NOT to try it, yet. Bummer, huh?
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| « Last Edit: Dec 26th, 2005, 2:13am by BobG » |
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zwibbs/Scott
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Re: new to site, couple ?'s
« Reply #5 on: Dec 26th, 2005, 1:56am » |
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Hey hockeyhead--I used to be a season ticket holder to the Rangers--but the nonsense of a year ago turned me off. .......I used to think that it was my teeth because the pain would sometimes centralize in my left jaw, BUT it never had anything to do with it. I agree about using oxygen with the prednisone and verapamil, as my neurologist has me on it---and I have suffered for 28 years. At first ( two weeks) it wasn't all that great --but someone on this board said to give it time as the verap needs to become therapeudic(?)----The ox comes in small cannisters---or large tanks..I got the small---left it beside my bed, and when I would awaken with a bell-ringer I'd put the mask on and it would do the trick.....Only thing is with this most recent cycle it just doesn't seem to want to go away. I am having minor attacks and they come very infrequently. It is just that in past cycles they would go away completely after about 10--to--12 weeks of a major cycle. Good Luck and let us know what happens ! Scott-NYC
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Jasmyn
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Re: new to site, couple ?'s
« Reply #6 on: Dec 26th, 2005, 4:06am » |
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Hi, Hockeyh.
Tooth problem? No, I don't think so.
Before I got CH, as a teenager, I went to this vet posing as a dentist. Where I live, professionals in those days use to multitask.
He relieved me of all four of my wisdom teeth, at once, in his consulting rooms. Needless to say, I didn't keep consciousness but at least I am rid of those beauties.
So the crux of the matter is that I do not have any wisdom or wisdom teeth and that I still suffer from pain in my teeth on the CH side.
So being toothless does not help with CH.
It is quite common to have your senses in hyper-drive, so it is not psychological although we all here rock to the coo-coo clock.
Like Sean and Bob said Dopeymax, yes, it works for some but you might loose some of your precious mind, a cocktail of meds sometimes works when the one you're on starts to fail.
Cheers, I hope you are PF by the turn of the new year.
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Jonny
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Re: new to site, couple ?'s
« Reply #7 on: Dec 26th, 2005, 4:23am » |
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on Dec 25th, 2005, 11:36pm, Sean_C wrote:| alot of people here pulled all thier teethe years ago before the docs knew much about CH in hopes that the pain/clusters would go away. |
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If only I could turn back the clock 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Jasmyn
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Re: new to site, couple ?'s
« Reply #8 on: Dec 26th, 2005, 4:38am » |
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on Dec 26th, 2005, 4:23am, Jonny wrote:
If only I could turn back the clock |
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Jonny they are supposed to be in a glass 
Now bite me if you can 
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Jazz
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Jonny
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Re: new to site, couple ?'s
« Reply #9 on: Dec 26th, 2005, 4:42am » |
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on Dec 26th, 2005, 4:38am, Jasmyn wrote:Now bite me if you can
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Id do more than bite you, Baby ....Hee Hee Hee 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Jasmyn
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Re: new to site, couple ?'s
« Reply #10 on: Dec 26th, 2005, 4:49am » |
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on Dec 26th, 2005, 4:42am, Jonny wrote:
Id do more than bite you, Baby ....Hee Hee Hee
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You're a real sucker for punishment
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Jazz
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Jonny
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Re: new to site, couple ?'s
« Reply #11 on: Dec 26th, 2005, 4:54am » |
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on Dec 26th, 2005, 4:49am, Jasmyn wrote:You're a real sucker for punishment
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Each day will be a new trick in life's journey
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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cardogman
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Re: new to site, couple ?'s
« Reply #12 on: Dec 26th, 2005, 8:28am » |
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I think if I am not mistaken I have had CH but brief episodes lasting not more then a day or a few days in the past 20 years. Because I thought they were just headaches I didn't pay any attention to them and it just went away. I truly believe that there is a psychological component to this. Much like OCD ( Obsessive Compulsive Disorder ) I am also sure that most people will disagree with me. OCD also has it's roots in the drop of Seratonin levels and Neurepinephrine levels and the anxiety associated with it revolves around the Hypothlmus.
I would be interested to know how many sufferers also have either mild to sever OCD either ritualistic or thought related.
Getting to your question about dental work. About a month ago as I posted before I went in for a simple re-root canal. There was a small pocket the dentist noticed at the top of the old root canal I had done a number of years ago. I went to a reputable endontist. When she drilled through the crown to get to the root she perforated my tooth. This means instead of entering the tooth correctly she went through the side of the tooth under the gum line. MALPRACTICE! The treatment for this is either extraction with insertioin of implant or what's know as a crown legnthening. A periodontist exposes the tooth by dissecting the gingiva or gum back to expose more of the tooth above the perforation. This allows the dentist to insert a crown over the perforation farther up the tooth. I had that done.
A week or two later I became a clusterhead. Now this was done on the opposite side of the cluster sites. I would think that if this was associated with the Oral Surgery it would been on the same side.
The psychological aspect of this may be my concern over what's known as life changes or the empty nest syndrome. My daughter is living in NYC and working there, she graduated college last may. My son was just accepted early to college and he will be going away this coming August and our lives are about to change.
My opinion is the following. Yes there is a pathology to this malady but it may be sort of like the intrusive thought form of Obsessive Compulsive Disorder.
The event comes which produces the thought.
The thought gets stuck by being frightened by it.
You are sensitized to it.
It continues to repeat until either you accept it as being normal every day thought that everybody has.
Fight it and it gets worse.
With all this the level of seratonin drops in the brain.
How do we make the analogy. For me when I wake up in the morning I have absolutely no pain and no sensitive head or forhead pain or anthing. After a few minutes of rising out of bead and thinking about it the pain comes back.
Why is this? Because I am expecing it to because I have become sensitized to it.
Most people think that this is anatomical. That there is a pathology to it. You know the gray matter thing the trigeminal nerve thing and I agree it is. But how did this brain structure change and how are these nerves sensitized and why does Biofeedback and Cognitive Therapy help CH. Because I believe it's not just pathological there is a pysychological component to this.
If you expect it it will come.
As for the dental work, possibly but I would say it would have to be on the same side as the infliction.
Burt
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BobG
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Re: new to site, couple ?'s
« Reply #13 on: Dec 26th, 2005, 8:23pm » |
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on Dec 26th, 2005, 8:28am, cardogman wrote:
After a few minutes of rising out of bead and thinking about it the pain comes back.
Why is this? Because I am expecing it to because I have become sensitized to it.
If you expect it it will come.
Burt |
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More than once it has been mentioned that someone feels fine until they start to read this message board, then they feel a shadow or attack coming on. Power of suggestion?
Heck, I don't know.
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burnt-toast
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Re: new to site, couple ?'s
« Reply #14 on: Dec 26th, 2005, 8:51pm » |
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on Dec 26th, 2005, 8:28am, cardogman wrote:I think if I am not mistaken I have had CH but brief episodes lasting not more then a day or a few days in the past 20 years. Because I thought they were just headaches I didn't pay any attention to them and it just went away. I truly believe that there is a psychological component to this. Much like OCD ( Obsessive Compulsive Disorder ) I am also sure that most people will disagree with me. OCD also has it's roots in the drop of Seratonin levels and Neurepinephrine levels and the anxiety associated with it revolves around the Hypothlmus.
I would be interested to know how many sufferers also have either mild to sever OCD either ritualistic or thought related.
A week or two later I became a clusterhead. Now this was done on the opposite side of the cluster sites. I would think that if this was associated with the Oral Surgery it would been on the same side.
The psychological aspect of this may be my concern over what's known as life changes or the empty nest syndrome. My daughter is living in NYC and working there, she graduated college last may. My son was just accepted early to college and he will be going away this coming August and our lives are about to change.
My opinion is the following. Yes there is a pathology to this malady but it may be sort of like the intrusive thought form of Obsessive Compulsive Disorder.
The event comes which produces the thought.
The thought gets stuck by being frightened by it.
You are sensitized to it.
It continues to repeat until either you accept it as being normal every day thought that everybody has.
Fight it and it gets worse.
With all this the level of seratonin drops in the brain.
How do we make the analogy. For me when I wake up in the morning I have absolutely no pain and no sensitive head or forhead pain or anthing. After a few minutes of rising out of bead and thinking about it the pain comes back.
Why is this? Because I am expecing it to because I have become sensitized to it.
Most people think that this is anatomical. That there is a pathology to it. You know the gray matter thing the trigeminal nerve thing and I agree it is. But how did this brain structure change and how are these nerves sensitized and why does Biofeedback and Cognitive Therapy help CH. Because I believe it's not just pathological there is a pysychological component to this.
If you expect it it will come.
As for the dental work, possibly but I would say it would have to be on the same side as the infliction.
Burt |
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Your first few sentences are quite telling - Cluster Headaches are not likely to be viewed as "just headaches" My first CH attack made me think I had a brain tumor or aneurism behind my eye that was about to explode. The way the pain manifested itself in a specific quadrant of my head, came during rest or sleep and had such terrible intensity - I knew it wasn't "just headaches". Then as now I absolutely can not ignore them.
Regarding OCD - no such issue in my case.
Regarding psychological possbilites you're barking up the wrong tree and pain associated with the Trigeminal nerve is only a symptom not a root cause of CH.
Recent studies on the enlargement of the Hypothalamus in CH patients and unusually high activity in CH suffer's Hypothalamus' during attacks clearly points to pathological causes over your OCD and psychological theories.
The symptoms as you describe them seem to indicate you may not be suffering from CH. You may want to seek another diagnosis.
Tom
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| « Last Edit: Dec 26th, 2005, 8:53pm by burnt-toast » |
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Sean_C
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Re: new to site, couple ?'s
« Reply #15 on: Dec 26th, 2005, 10:13pm » |
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on Dec 26th, 2005, 8:51pm, burnt-toast wrote:| The symptoms as you describe them seem to indicate you may not be suffering from CH. You may want to seek another diagnosis. |
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Butch how would you even know you had CH if you only had it a day or so in twenty years? I agree with Tom, your not a clusterhead by a long shot.
Sorry for the disappointment.
Sean....................................
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Redd
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Re: new to site, couple ?'s
« Reply #16 on: Dec 26th, 2005, 10:58pm » |
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Quote:| I think if I am not mistaken I have had CH but brief episodes lasting not more then a day or a few days in the past 20 years. Because I thought they were just headaches I didn't pay any attention to them and it just went away. |
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Hold up a moment her folks...this is exactly how CH manifested in me for the first 20 or so years. Every week for all those years...between 1 and 4 days of attacks with a few days off every week. This is where all the numerous mis Dx came in. Allergies, TMJ, Migraine, braces, months of chiropractors, months of physical therapy including cervial traction. Nothing helped. Trying to rip my own teeth out in the middle of the night to try to ease the pain thinking it was continues misalignment even after the braces they said would stop the headaches and never did.
Pegg
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BobG
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Re: new to site, couple ?'s
« Reply #17 on: Dec 26th, 2005, 11:09pm » |
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on Dec 26th, 2005, 10:58pm, Redd715 wrote:
Hold up a moment her folks...this is exactly how CH manifested in me for the first 20 or so years. Every week for all those years...between 1 and 4 days of attacks with a few days off every week. This is where all the numerous mis Dx came in. Pegg
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Mine started sort of like that. The first year or two the attacks only came when I drank a beer (which was almost every other day). Then they started the wakeup calls with or without the beer. After about the second year they were 'normal' clusters. Every night and day. I also was misdiagnosed. My doc had no idea what they were. I saw a dentist, an ear-nose-throat doc, an eye doc, had an CAT. Nobody knew the the heck was causing the headaches until about the tenth year when I finally got to see a neurologist.
Sucks to be us.
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E-Double
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Re: new to site, couple ?'s
« Reply #18 on: Dec 26th, 2005, 11:13pm » |
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I'm with you Pegg.
Though I never had teeth pulled until this yr for an infected wisdom toothe.
I used to get random attacks prior to full on cycles.
I used to think it wad sinusitis on roids per se.
Then I developed cycles, brief but full cycles.
Then they came and went heywire and finally after a decade of "cycles" I was diagnosed.
They haven't left since.
Based on what I have read of many people's history it appears that prior to full cycles developing there were random attacks that literally came a few at a time then left for months or yrs then they came back and gained a hold.
Others have random attacks when out of cycle.
Hit and runs if you will.
It all sucks.
I do not think that acting as Pygmalion facilitates a CH though.
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Redd
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Re: new to site, couple ?'s
« Reply #19 on: Dec 26th, 2005, 11:19pm » |
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on Dec 26th, 2005, 11:09pm, BobG wrote:
Mine started sort of like that. The first year or two the attacks only came when I drank a beer (which was almost every other day). Then they started the wakeup calls with or without the beer. After about the second year they were 'normal' clusters. Every night and day. I also was misdiagnosed. My doc had no idea what they were. I saw a dentist, an ear-nose-throat doc, an eye doc, had an CAT. Nobody knew the the heck was causing the headaches until about the tenth year when I finally got to see a neurologist.
Sucks to be us. |
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Beast morphed to additional daytime attacks instead of just night time and wake me up almost 2 years ago when I quit smoking cold turkey. Went to every damned day too without the couple days break. Messed with the brain chemistry and *POW* beast took off willy nilly. When you don't have insurance you just do what you have to do to maintain, specially when I'd get those few days breaks. But the morph made me convinced something more serious than the migrains, teeth issues or allergies were at play, mostly that I was dying of some brain tumor or something, and work requires anything more than 2 days sick you need a doctors slip, and the 2 days turned into 3 months..... 
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cardogman
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Re: new to site, couple ?'s
« Reply #20 on: Dec 26th, 2005, 11:21pm » |
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Tom,
I would just about give my right pinky not to have cluster headaches but unfortunately I have spent a lot of money getting the right diagnosis.
I have had those headbangers but you know people react to pain differently and any reputable Neurologist or headache specialist will tell you that it is very possible to have CH with mild to moderate pain.
I truly believe their is a psychological component to it.
For example:
Today My wife and kids and I went to a Knick game. I have had a headaches on one side of my head all day. The scalp is burning the eye is tearing the forehead over my eye feels like some hit me.
As Vince Carter is going off on the Knicks and the game
is getting intense I sat back in my chair and realized that the pain was there but I hadn't felt it for awhile.
In the Am I oxygenated myself and got relief. A few hours later like clockwork bang it hit and it usuallty doesn't go away for the rest of the day.
Burt
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zwibbs/Scott
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Re: new to site, couple ?'s
« Reply #21 on: Dec 27th, 2005, 12:45am » |
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Today My wife and kids and I went to a Knick game. I have had a headaches on one side of my head all day. The scalp is burning the eye is tearing the forehead over my eye feels like some hit me.
------------------------------------------------------------------------ ------------I forgot to list the "Knicks' AS A TRIGGER---BUT I ALWAYS THOUGHT THE TRIGGER WAS THE DOLANS !!!
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Sean_C
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Re: new to site, couple ?'s
« Reply #22 on: Dec 27th, 2005, 1:05am » |
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on Dec 26th, 2005, 11:21pm, cardogman wrote:| Today My wife and kids and I went to a Knick game. I have had a headaches on one side of my head all day. The scalp is burning the eye is tearing the forehead over my eye feels like some hit me. |
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on Dec 26th, 2005, 11:21pm, cardogman wrote:| In the Am I oxygenated myself and got relief. A few hours later like clockwork bang it hit and it usuallty doesn't go away for the rest of the day. |
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Burt, you don't have clusters. You have a headache, its just not a cluster headache.
Why is it that people want this affliction anyway? I'd give both my legs and my arms to not have it.
Sean...............................
Burt its very possible that you suffer from this, please check out the link
http://www.ninds.nih.gov/disorders/hemicrania_continua/hemicrania_contin ua.htm#What_is
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| « Last Edit: Dec 27th, 2005, 1:11am by Sean_C » |
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burnt-toast
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Re: new to site, couple ?'s
« Reply #23 on: Dec 27th, 2005, 7:29am » |
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on Dec 26th, 2005, 11:21pm, cardogman wrote:Tom,
I would just about give my right pinky not to have cluster headaches but unfortunately I have spent a lot of money getting the right diagnosis.
I have had those headbangers but you know people react to pain differently and any reputable Neurologist or headache specialist will tell you that it is very possible to have CH with mild to moderate pain.
I truly believe their is a psychological component to it.
For example:
Today My wife and kids and I went to a Knick game. I have had a headaches on one side of my head all day. The scalp is burning the eye is tearing the forehead over my eye feels like some hit me.
As Vince Carter is going off on the Knicks and the game
is getting intense I sat back in my chair and realized that the pain was there but I hadn't felt it for awhile.
In the Am I oxygenated myself and got relief. A few hours later like clockwork bang it hit and it usuallty doesn't go away for the rest of the day.
Burt |
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I'm not a doctor Burt and can't diagnose your condition. But I find nothing in my CH research that describes all day headaches as a CH symptom. A few to several hous, hypersensativity in the affected areas yes - all day CH headache no. Let's all thank the Good Lord for that.
You may be exactly right, in your case there may psychological causes for your headaches and you may have some rare/mild form, or CH that has yet to fully manifest itself. In my case the only truely consistent triggers are rest, sleep, alchohol, extended physical exertion and seasonal factors - Fall, Winter, Spring are bad, Mid. to Late Summer is somewhat better.
I have logged other factors (stressful situations, food triggers, temperature, etc.) but have not found consistent association between them and my CH attacks. A variety of "other factors" may seem to have triggered attacks but when logged/tracked at best these "other factors" are very inconsistent if they are indeed true triggers.
Everyone seems different - my knowledge of CH is limited to symptoms associated with my condition, my research, and more than a decade of developing one-on-relationships with Neurologists, I can only relay what I know.
I am just pointing out that the symptoms as you describe them seem to indicate you may not be suffering from CH. You may want to seek another diagnosis.
Tom
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| « Last Edit: Dec 27th, 2005, 7:31am by burnt-toast » |
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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cardogman
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Re: new to site, couple ?'s
« Reply #24 on: Dec 27th, 2005, 6:19pm » |
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Sean and Tom,
Let's play Headache Specialist and Neurologist. But before we do that find out if it is possible to have mikd cluster headache all day. I think you will find out that it is.
So here we go
1. Drooping eye
2. Red Sclera
3. Eye weeping
4. Pain on one side of the head radiating in to the eye and forehead on that side and sometimes in to the ear.
5. Discomfort at the base of the neck on the affrected side.
6. Pain around the temporal area.
7. Sometimes it stays with me 1-2 hours sometimes most of the day/
8. Sometimes responds yto Oxygen.
Now what's ypour diagnosis Sean and Tom. I would love not to have this malady. However as they say if it walks like a duck and quacks like a duck it a duck.
Two headache specialists and two Neurologists say yes.
As Bill O'reilly would say What Say You.
Burt
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