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Topic: Got CH?? (Read 473 times) |
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Prense
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This was posted on the meds board...
Quote:I have watched this site for 5 months trying to find out if there was anything I could do to help my husband who is 57. Now I have to share what has happened to us so that all of you can re-question your physicians.
About 14 years ago my husband started with the pain on the right side of his face. It would come, mostly in the winter, and then in the summer it would go away. For several years they treated him with vitamin B and antibiotics. Then he was sent to an ENT and they took out a turbinate and fixed his deviated septum and told him that would fix the problem. But of course it didn't.
He lived with it the best he could - until two years ago it hit so severly it put him into an irregular cardiac arrhythmia and into the hospital with a morphine drip since the blood pressure was now sky high.
He was sent to a neurologist who for 2 years has treated him first with depakote (that wiped out his short term memory so bad they changed to topamax) and prednisone. It helped but he never had relief. He was diagnosed as chronic and for the last 2 years, he has never been able to come off any medications.
Last Oct. he went into a sunct syndrome and he was upped to 500 milligrams of topamax a day and 80 milligrams of prednisone per day. Even at those levels he was still not able to sleep, drive, work, eat or even wash his face without horrible pain.
He was finally sent to a neurosurgeon to have the radio frequency procedure done, told he would have numbness on that side of his face, but would finally have relief. The neurosurgeon interviewed my husband for about 40 minutes and calmly said - you do not have cluster headaches - you have trigeminal neuralgia. This surgeon specializes in a procedure call microvascular decompression and that is what he wanted to do. There is a lot of information on the procedure (MVD) on the internet. The nerve damage does not show up on MRI or CT scans.
On Feb. 3rd my husband had the procedure done and from the moment he woke up he was pain free. The pain of the surgery was so much less, that all he needed was 2 tylenol that day. He was discharged two days later and other than weak from 4 months of being in bed - he feels great.
I normally do not get on the internet because I am not very good at it, but I know the horrible pain that all of you suffer and I had to share this story. Please re-question your physicians. If my husband had pushed harder - he would have never had to suffer like this.
The one thing that the surgeon said was a tell tale sign for true cluster was that there will be family history. If there is no family history, then something else is going on.
I wish all of you a cure - please do not give up. A miracle has happened at our house and I pray that you will find the same. |
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Quote:| 500 milligrams of topamax a day |
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Scares me to think how often this or something similar is happening...
Chris
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pubgirl
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I agree Prense, but must point out that the pain in TN is quite different to CH (it stabs and stops) and also the comment about "The one thing that the surgeon said was a tell tale sign for true cluster was that there will be family history. If there is no family history, then something else is going on"
is cobblers! Of course you can have Ch with no family history of it.
Wendy
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| « Last Edit: Feb 16th, 2004, 11:20am by pubgirl » |
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Edski_1
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Re: Got CH??
« Reply #2 on: Feb 16th, 2004, 12:39pm » |
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Read that...500 mg of el Dopa...man, that would lead to Night of the Living Dead! 
Wonder where the Doc comes up with the comment about family history, or am I reading that wrong? Everywhere else I've read seems to indicate that at most there's about a 10% incidence of family histiry in CH...
I guess the general characteristics of CH and TN are similar enough, but the time scales should be enough to clue a Doc to the difference...also, from what one poster mentioned (I think in that thread), the triggers for TN are primarily physical...whereas the triggers for CH are primarily, well, mysterious.
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Prense
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Re: Got CH??
« Reply #3 on: Feb 16th, 2004, 12:53pm » |
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on Feb 16th, 2004, 11:19am, pubgirl wrote:| I agree Prense, but must point out that the pain in TN is quite different to CH |
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I wouldn't know...I've never had TN. Lord, I hope I never get it.
This is the 2nd person that I know of with TN that was previously diagnosed CH. Additionally, I know of three people with MS that were mis-diagnosed with CH.
I don't care how obvious these symptoms may seem to you all, but this is very real and scary as hell. It is not so obvious when you have no idea what CH is and you are diagnosed with it. People are all too willing to trust the diagnosis of their doc...at least, initially. Not all CH sufferers visit this site nor have access to all this info.
Chris
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pubgirl
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Prense
Sorry, I wasn't clear enough. You were SO very right to post this and highlight it.
It really shows how important it is for people to read the differential diagnoses for the main headache types as doctors themselves seem often to be clueless about the differences.
The classic one, and possibly the most criminal is misdiagnosing CPH as CH, because CPH is relatively easy to treat with indomethacin, thereby underlining the importance of distinguishing it from CH.
I also think we have a responsibility here if we are 'advising' people to know the differences ourselves. I know we always add on the usual "we are not doctors" stuff, but sometimes I don't think we ask enough questions before we start saying "Take Imitrex or 02".
I personally watch out for people I suspect might have BAM migraines, because Imitrex could kill them if they take it!
Wendy
JUST A THOUGHT
Would there be any mileage in making the differences between the headache types more obvious on the site e.g. via a basic chart high up on the links list on the left?
Sorry Bob Kipple, but I would have thought this was equally as important as being able to describe how bad the pain is on a 1-10 scale (though I do love the shorthand you invented of the Kip scale  )
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| « Last Edit: Feb 16th, 2004, 1:51pm by pubgirl » |
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kissmyglass
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Re: Got CH??
« Reply #5 on: Feb 16th, 2004, 6:52pm » |
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Ok, when she said Prednisone wan't working...then it hurt to eat and wash his face, I instantly knew he had TN & not Ch before I even read it. Now if I know this why doesn't the friggin Neuro who treated him for 2 years??
When I found out I had CH & not TN, I was somewhat relieved. Even though they have the decompression surgery which is very sucessful,it's a major, major surgery. The TN boards are all doom & gloom. They are in total misery & the pain is as intense as ours. After reading the TN boards for a while I was miserable. When I found these boards, the first day I laughed for the first time in 2 years. I was as glad as one could be to be a Clusterhead.
Kev
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JohnM
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Re: Got CH??
« Reply #6 on: Feb 20th, 2004, 2:25am » |
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I'm with you on this Kev
with the proviso "I'm not a Dr"  it hit me right away that this did not look like CH when it hurt to wash his face and eat.
Where are these useless Drs and Neuros trained?
John
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Prense
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Re: Got CH??
« Reply #7 on: Feb 20th, 2004, 6:54pm » |
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on Feb 16th, 2004, 6:52pm, kissmyglass wrote:| Ok, when she said Prednisone wan't working...then it hurt to eat and wash his face, I instantly knew he had TN & not Ch before I even read it. |
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Again, I am certain that CH misdiagnosis (in either direction) is more common than what we all think it should be.
Chris
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BobG
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Re: Got CH??
« Reply #8 on: Feb 20th, 2004, 9:03pm » |
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on Feb 16th, 2004, 1:47pm, pubgirl wrote:
JUST A THOUGHT
Would there be any mileage in making the differences between the headache types more obvious on the site e.g. via a basic chart high up on the links list on the left?
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Hey Wendy, there already is a chart about types of headaches.
Click the OUCH website button. Point at Cluster Help and select Headache Comparison Table.
or just click this
http://www.clusterheadaches.org/comparison_table.htm
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