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Topic: I've been told, but I'm not sure I agree... (Read 450 times) |
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Blondebear
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I've been told, but I'm not sure I agree...
« on: Aug 22nd, 2005, 2:44pm » |
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 Hi. My name is Jo. I was diagnosed with Clusters 2 1/2 years ago. Told that by my descriptions, it was absolutely... etc. I've never embraced that. From what I feel, and what I read, I just don't think it fits. I don't know personally anyone that has the misfortune of having Clusters, so I don't have anyone to compare with. Here's what I feel. Always on my left side of my head, tingling/numbness/pain. Radiates from jaw up the side of my head, into my ear, and landing in my left eye. Not every area is affected every time.
Does that sound familiar?
I would appreciate any feedback you would care to provide.
Thanks
Jo
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E-Double
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Re: I've been told, but I'm not sure I agree...
« Reply #1 on: Aug 22nd, 2005, 3:10pm » |
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Hiya Jo,
Take the "cluster quiz" located on the menu to the left of the screen.
See what happens and let us know.
There are a few HA that resemble cluster yet differ in intensity, duration and responsiveness to certain medications.
Good luck and I hope it is not.
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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unsolved1
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Re: I've been told, but I'm not sure I agree...
« Reply #2 on: Aug 22nd, 2005, 7:23pm » |
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Hi Jo  First of all, lets hope you don't have clusters! I'd like to ask a few questions:
How often do you have these headaches?
How long do they last?
Do they ever wake you up?
What do you do during a headache?
Describe the pain ...
These questions will give us (and you) a clue as to weather you have clusters or not.
Best Wishes
UNsolved
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thebbz
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Re: I've been told, but I'm not sure I agree...
« Reply #3 on: Aug 22nd, 2005, 7:46pm » |
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Sorry your hurtin. More important than being told ..told by whom? Hopefully a neurologist. Even then they don't always agreee. Hope ya feel better. If the pain trobs with a sharper more intense stabbing, maybe some nasal and tear on the affected side..wellI hate it for ya.
Get a second opinion by all means.
BB
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Kris_in_SJ
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Re: I've been told, but I'm not sure I agree...
« Reply #4 on: Aug 22nd, 2005, 7:47pm » |
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Hi Jo - Welcome.
Ditto to EE - take the quiz and see if it fits. Each of us has pain centered in the area of and along the trigeminal nerve, which affects the eye, ear, throat and teeth. We're all a little different. Personally, mine always start as a burning in my left sinus, but within 3 minutes is centered on my eye and temple. At the peak of cycle, the pain radiates to the back of my throat and into my ear.
One surefire way to find out is to take a known cluster abortive like a Trex inject or properly administered oxygen to see if the HA goes away. Another is to have your doc administer Nitroglycerin and see if it brings on a HA.
Read, read, read all you can here - especially the links to the left. With any luck, you have something else. If not, well then, we're always here for you.
Keep us informed. Many hugs,
Kris
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mcf69
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Re: I've been told, but I'm not sure I agree...
« Reply #5 on: Aug 22nd, 2005, 10:41pm » |
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Hi Jo,
The others have given you lots of good advice, try their suggestions. Have you ever heard of tic douloureux (trigemial neuralgia)?, try looking into that, I just read an article by Dr Donohue about it today, mimicks alot of the symptoms of CH. Let us know how you make out. Best of luck....
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Bob_Johnson
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Re: I've been told, but I'm not sure I agree...
« Reply #6 on: Aug 24th, 2005, 8:06am » |
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Jo, there is enough variation in the symptom picture with clusters that you should not expect any specific description to fit you perectly. This is especially the case when clusters have first come into you life: It's not unusual for symptoms to be unclear and change for some time before "maturing" into a stable picture.
I understand Kris' comment about testing our Dx by trying Imitrex. However, this is not an accurate way to Dx clusters. That any drug aborts an attack does not prove the diagnosis. There are a number of medical disorders which show up as cluster-like attacks -- but you may still not have cluster headache.
This is why finding an experienced doc to help is so important. It often takes several docs over several years to get a good Dx--sad! So, seek a good doc as the first step. Don't assume a doc is good just because, for example, he is a neurologist. Ask specific questions: do you treat clusters?, what is your experience?, how do you treat them?, etc.
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Bob Johnson
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Blondebear
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Re: I've been told, but I'm not sure I agree...
« Reply #7 on: Aug 24th, 2005, 12:35pm » |
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Thanks to all of you that took the time to provide your input. Here's more about what I've done and been through.
I took the quiz, and frankly didn't fit the Cluster profile. I'm seeing a very knowledgeable Neurologist in the headache arena. She's been trying all kinds of medications, and NONE have provided prevention or relief, except of course predisone and pain pills. Neither of which provide great hope and do provide unacceptable side effects.
The one question I had hoped to have answered by some of you that suffer - and my heart goes out to you! - - Does anyone have a similar sensation to mine.. It is clearly nerves reacting to something, it's not inside my head like migraines are. So? Is the Nerve thing familiar to anyone from their own experiences?
One person asked if I knew about tic douloureux (trigemial neuralgia). Yep I've read about it, and there are some similarities to that as well.
I appreciate all of your input and wish I could take away the pain for you. I know I want mine taken away too.
God Bless....
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Kris_in_SJ
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Re: I've been told, but I'm not sure I agree...
« Reply #8 on: Aug 24th, 2005, 2:10pm » |
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Jo,
Bob is right. There's alot of variation in our symptoms.
I can tell you that during my first cycle, which lasted about 12 weeks, I had NO headache - just a constant dull pressure in my temple and pain along the trigeminal nerve. I could actually trace my finger along the pain lines. Needless to say, many meds and tests later, I was still undiagnosed.
It wasn't until 4 years later that the next cycle came along and turned out to be pretty classic for episodic clusters. That was when I was diagnosed.
It sounds like you have a pretty knowledgeable doc. My best advice is to work with her to find the best treatment options for you. I do question the use of pain pills, though. Most neurologists don't prescribe narcotics for clusters because of rebound effects.
PF Wishes,
Kris
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Blondebear
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Re: I've been told, but I'm not sure I agree...
« Reply #9 on: Aug 24th, 2005, 2:40pm » |
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Pain Pills....
I take Vicodin because it does help me continue to function. Not that its a preference, but some relieve is better than none. Because when this starts, it goes for days - weeks even months at a time, and I think we all know, that we can only tollerate so much continuous pain. I have to work, I have to keep a roof over my head, I have to feed the dog. So function I must do. Every day. Just like everyone else in here.
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seasonalboomer
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Re: I've been told, but I'm not sure I agree...
« Reply #10 on: Aug 24th, 2005, 3:05pm » |
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on Aug 24th, 2005, 2:40pm, Blondebear wrote:| I think we all know, that we can only tollerate so much continuous pain. I have to work, I have to keep a roof over my head, I have to feed the dog. So function I must do. Every day. Just like everyone else in here. |
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Hey Blondie,
Sorry to hear of your headache problems, and yes you have a compassionate set of ears and minds on the site. The aim of many of us is to find a way to manage our headaches so as to avoid the pitfalls associated with many meds. Continuous use of most narcotics can result in dependency, which is counter to the philosophy some of us pursue. The objective being "do as little harm" as possible in the management process.
You may or may not have Clusters, that we can't be the judge of. But, it is fairly well accepted that it is very rare that use of narcotics/pain killers has much viable, long term use in the cluster environment. Jobs, families, dogs and life are part of building a focus to have a life inspite of our affliction, not accept a life of being afflicted.
Take care of yourself, and take care of your care.
Scott
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Blondebear
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Re: I've been told, but I'm not sure I agree...
« Reply #11 on: Aug 24th, 2005, 4:37pm » |
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Scott - et al...
Let me clarify the narcotics usage, I see I hit a strong point with the members here. I'm glad for that.
I do not take much, but I do use some when that's my only relief.
I too believe consistent use of narcotics is a very wrong thing to do to your body. I can't say that strongly enough. I take less than 1/2 of the dosage I'm told I can take, and I dont' take them regularly. Only when I can't stand it any more. Ask my friends... they are constantly suggesting I take some more to feel better. I don't.
I appreciate the concern, and I echo your sentiments.
I can't tell you the laundry list of other meds we have tried to avoid this direction, so far total failure. I got tired of being a guinea pig. Many of the side effects were worse for me than the cause.
Oh well.. .......
Thanks again for input and honesty.
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Kris_in_SJ
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Re: I've been told, but I'm not sure I agree...
« Reply #12 on: Aug 24th, 2005, 8:05pm » |
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Don't give up Jo.
The use of narcotics is a subject frequently discussed here. There are some who find no relief with anything but strong narcotics which induce sleep, but rarely touch the agony of a CHA. Plus, they can cause pretty severe rebound HA's.
The point I originally intended to make was that a knowledgeable neurologist rarely prescribes them for CHA's because of the rebounds. Has your neuro tried you on Oxygen? I only ask because, if she believes you have CHA's, that's usually the first pain abortive prescribed.
Please don't take offense by anything you read here. We're certainly not doctors, but we want very much to help others who might be suffering from this syndrome.
PF Wishes,
Kris
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Re: I've been told, but I'm not sure I agree...
« Reply #13 on: Aug 25th, 2005, 7:45am » |
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Quote:| they are constantly suggesting I take some more to feel better. |
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Worse advice ever given to CH sufferers for 2 reasons:
1. Risk of addiction
2. Narcs can trigger an attack
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Blondebear
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Re: I've been told, but I'm not sure I agree...
« Reply #14 on: Aug 25th, 2005, 11:00am » |
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Hey Kris,
No offense taken. I appreciate the spirited responses. I just felt I had to offer up that I'm not taking these in quantities that are troublesome.
I haven't tried the oxygen. I guess it's time to talk about it.
Thanks.
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seasonalboomer
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Re: I've been told, but I'm not sure I agree...
« Reply #15 on: Aug 25th, 2005, 11:51am » |
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on Aug 25th, 2005, 11:00am, Blondebear wrote:
I haven't tried the oxygen. I guess it's time to talk about it.
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Blondie,
If it is Cluster you have then don't hesitate by talking about O2, FIND A WAY TO GET SOME. It is quite effective at aborting a hit for many of us. I hummed and hawed for a year before finally getting my tank and now I could kick myself for all the extra time I spent writhing around on the floor.
Print out the O2 info on the site and take it to your Neuro.
Good luck,
Scott
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thebbz
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Re: I've been told, but I'm not sure I agree...
« Reply #16 on: Aug 25th, 2005, 9:59pm » |
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Blondie,
Spirited answers..LOL Narcs usually trigger the CH.
Personally after the second failed prednisone taper, many years ago I had been up for three day's and still gettin hit every time I relaxed. We didn't have trex then, I begged the doc to kill me. He shot me promptly with a huge shot of demerol 1 hour later I still begged him to kill me only I was slurring my words. Ended up with the DHE IV. The narcs just dont work.
BB
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deltadarlin
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Re: I've been told, but I'm not sure I agree...
« Reply #17 on: Aug 27th, 2005, 12:41pm » |
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Has anyone checked for TMJ?
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