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Topic: Can I borrow the might of your CH brains? (Read 374 times) |
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pubgirl
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Can I borrow the might of your CH brains?
« on: Mar 17th, 2005, 8:17pm » |
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Asking for some help from the eggheads here on a real puzzler please.
Have a headache sufferer asking for help/ideas who has been told they have "Ch with atypical symptoms" (that old chestnut again) by a neuro (who should be shot!)
His words (edited) are below:
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I first experienced them about 10 years ago (I'm 28 ), and was diagnosed with CH after my first sustained bout about 7 years ago. I was prescribed Pizotifen, but stopped using this as it appeared to have no effect when I suffered a number of bouts in the following years.
The pain affects the right side of the head, around the eye and manifests itself in a harsh dull pain I can only describe as equivalent to being punched, or an electric shock. This shock "pulsates" in my head and radiates down the right side of my body, my neck, arm and my leg goes weak, causing me to need to sit or support myself. This shock of pain lasts for no more than 30 seconds before it recedes. There are no autonomic symptoms experienced with it. On an emotional level the attacks fill me with a sensation of sudden fear and paranoia which recedes along with the attacks, noise and light also become distressing during the attack.
When first diagnosed I would have approx 4 attacks a day for 2-3 weeks and then they wold go into remission for up to 2 years. This was the pattern until last year; During a typical bout, the headaches became more frequent and the 30 second bursts of pain would occur every 10 minutes rather than every few hours. As a result I was having 15 or more attacks in a couple of hours.
At this stage I was referred to a neurologist at X hospital, who originally diagnosed "Episodic severe unilateral headache with some features of Paroxsymal Hemicrania" I was prescribed Indomethacin which had no effect. I was then prescribed a dose of steroids (can't remember the name), which also didn't work. This led to the neurologist revising his diagnosis.
Eventually I was put onto Verapamil, advised to blitz them at the onset of an attack with 3 x 240mg a day. This seemed to work at the time in stopping the attacks (although I've never ruled out that it might have been the natural end of the bout) and lead to the neurologist's final diagnosis being "slightly atypical CH".
The latest bout I'm enduring exactly one year on (I guess mine are at least partially seasonal) have escalated themselves, starting with a few attacks a day, a couple of days of remission followed by the most severe pattern of attacks I've ever had, with one attack approximately every 5 minutes for about 14 hours.
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So folks, Wendy the Brit now asks, what think you?
In my view:
It isn't CH (symptoms nowhere near fit)
Isn't SUNCT, there are no autonomic symptoms
Probably isn't PH/CPH or Idiopathic stabbing as Indo didn't work.
I'm a bit stumped where to suggest he goes unless it is to another neuro (and he did go to a reputable hospital)
Indo dose too low???
Another headache type I've forgotten about?
Your thoughts and ideas appreciated
Wendy the Brit
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| « Last Edit: Mar 17th, 2005, 8:37pm by pubgirl » |
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Kris_in_SJ
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Re: Can I borrow the might of your CH brains?
« Reply #1 on: Mar 17th, 2005, 8:31pm » |
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Wow, Wendy!
I am absolutely stumped. I would have thought of all the sames things you did. They're certainly not clusters. Hopefully someone will come along that can give some idea.
The fact that this person experiences one-sided weakness really concerns me - makes me wonder if there's some kind of spasm in the temporal artery.
Kris
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jokrs2
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Re: Can I borrow the might of your CH brains?
« Reply #2 on: Mar 17th, 2005, 8:32pm » |
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Sorry to hear about your friend. It looks like the search for the answer HAS to continue in my humble opinion. I have had to go to more than 1 doctor or 1 neuro or 1 surgeon to get the right diagnosis before, so that appears necessary here as well. I wish your friend success in finding the answer and I am sure some others on the board will chime in soon. The one sided weakness is a bit alarming.
Blessings, Joe
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| « Last Edit: Mar 17th, 2005, 8:34pm by jokrs2 » |
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pubgirl
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Re: Can I borrow the might of your CH brains?
« Reply #3 on: Mar 17th, 2005, 8:37pm » |
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It would be wrong to ASSUME he has had scans, but the hospital he went to is a good one, so you kind of think he must have.
Need to ask the question but not sure how to without freaking him out (he isn't a friend, he has contacted OUCh for advice and I'm stumped!)
W
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jokrs2
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Re: Can I borrow the might of your CH brains?
« Reply #4 on: Mar 17th, 2005, 8:42pm » |
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Sorry about the mixup pubgirl. Didn't know what else to call the mystery person at the time....knew I should have spent more time in class  . My dad stroked and had major one sided problems. Hopefull this person is not having some kind of mini-stroke or something similar. PFD's, Joe
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Kris_in_SJ
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Re: Can I borrow the might of your CH brains?
« Reply #5 on: Mar 17th, 2005, 8:46pm » |
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I don't think you have to freak him out with possible diagnosis. Maybe you could just ask what tests he/she has undergone to rule out any serious problems? Adding, of course, that tests like MRI's are usually required for anyone suffering severe headaches.
Kris
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pubgirl
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Re: Can I borrow the might of your CH brains?
« Reply #6 on: Mar 17th, 2005, 8:52pm » |
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I've contacted him and just asked him if he has had all the "routine brain scans" done. Unlikely to get an answer yet though as it is 2am here!
W
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don
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Re: Can I borrow the might of your CH brains?
« Reply #7 on: Mar 17th, 2005, 8:53pm » |
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I went to one of the most prestigious teaching hospitals in Boston and was treated by the Chief of Neurology.
The man was a complete idiot.
Reputable hospital or not I would seek other opinions on this one. Medical opinions I mean. We could beat this around for days like a dead horse and get nowhere.
How about Prof. Goadsbye ? Can he get in to see him?
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pubgirl
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Re: Can I borrow the might of your CH brains?
« Reply #8 on: Mar 17th, 2005, 8:55pm » |
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Don
Have suggested this to him as he is already being seen at another London Hospital and he might even get PG himself as he loves difficult cases, but there is a long wait on the NHS to get there unfortunately
W
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Lizzie2
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Re: Can I borrow the might of your CH brains?
« Reply #9 on: Mar 17th, 2005, 9:27pm » |
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How about an EEG too to look for any type of seizure or abnormal electric activity in the brain? And they do EMG's if muscles are involved. Just sort of throwing out possible ideas!
Wendy, you probably don't remember this, but it took place almost back when I first joined ch.com Someone asked about a certain symptom, and I posted an abstract to an article on possible patterns of Hemiplegic Cluster...at Jefferson they had seen a few cases (4, I think?) that appeared like clusters but had the one sided stroke-like features, similar to hemiplegic migraine.
Although, this person's actual symptoms don't sound much like cluster...and I'm not sure if in that particular study, the patients definitely had cluster headaches, but also that weird added part of seeming like hemiplegia. At any rate...that's sort of a random thought...
If you'd want, I could look back for that article on pubmed and maybe ask into the details around it a bit, but only if you think it would be helpful!
Lizzie 
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pubgirl
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Re: Can I borrow the might of your CH brains?
« Reply #10 on: Mar 17th, 2005, 9:32pm » |
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Cheers Lizzie
It might be useful and it would certainly be good to add it to my "library" as I didn't last time. The one-sided weakness may be nothing as some classic migraine sufferers get it too, but you never know.
Wendy
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| « Last Edit: Mar 17th, 2005, 9:33pm by pubgirl » |
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Ueli
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Re: Can I borrow the might of your CH brains?
« Reply #11 on: Mar 17th, 2005, 9:37pm » |
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Pain like an electric shock occurs in Trigeminal Neuralgia, but the pulsating for 30 second does not fit. In TN the shocks are single, short events, albeit they can recur every few minute.
The radiating to arms and legs are not characteristic for any vascular headache, and labeling them as "atypical" before sweeping them under the carpet is downright irresponsible (IMHO).
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Lizzie2
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Re: Can I borrow the might of your CH brains?
« Reply #12 on: Mar 17th, 2005, 9:45pm » |
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Here's the abstract from PubMed, although it's not that helpful in a stand-alone sense. The entire article would be more helpful, but I don't want to copy and paste it all and be all illegal! Here's the stuff from PubMed:
Quote:1: Headache. 2002 Feb;42(2):136-9. Related Articles, Links
Hemiplegic cluster.
Siow HC, Young WB, Peres MF, Rozen TD, Silberstein SD.
Jefferson Headache Center, Department of Neurology, Thomas Jefferson University Hospital, Philadelphia, PA 19107, USA.
We report four cases of a new variant of cluster headache associated with hemiparesis. Clinical similarities with hemiplegic migraine suggest that hemiplegic cluster, too, may be a channelopathy. One of our patients had a family history suggestive of an autosomal dominant inheritance.
Publication Types:
Case Reports
PMID: 12005289 [PubMed - indexed for MEDLINE] |
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Lizzie2
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Re: Can I borrow the might of your CH brains?
« Reply #13 on: Mar 17th, 2005, 9:48pm » |
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NM on getting the full text...for some reason through Jefferson's databases, I can't get that article via full-text. I'd have to go to the library and look it up...which I don't have time to do at the moment, but now that I gave you the abstract, you may be able to find it on your end!
Lizzie
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pubgirl
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Re: Can I borrow the might of your CH brains?
« Reply #14 on: Mar 17th, 2005, 9:48pm » |
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Wonder if it is whole new headache type, hemiplegic hemicrania 
I think my brain hurts even more now
W
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Lizzie2
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Re: Can I borrow the might of your CH brains?
« Reply #15 on: Mar 17th, 2005, 9:56pm » |
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on Mar 17th, 2005, 9:48pm, pubgirl wrote:
I think my brain hurts even more now
W |
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Amen! LOL
I presented this general power point presentation today as part of my honors project in nursing school. I did it as a "sneak attack" at the beginning of one of our other classes, and that pissed off the students...but the reason I did it then was because if they knew about it ahead of time, they wouldn't come. The presentation was entitled "Migraine and Headache 101" and I had to talk about a lot of stuff in under 30 minutes...so I was flyyyyyyying through it. Couldn't really do it a good service.
Most of the negative comments had to do with the fact that I didn't give them a handout of the presentation so they could follow along (I emailed it to them retroactively this afternoon so they could at least look back at reference it), and also that I talked too fast. But then some people said that they were getting bored, so they needed me to talk fast. I'm not sure how to do both! I had a whopper of a mig after that!
I did a post-survey to find out how effective my educational presentation was. Although there are mainly some very positive comments (including some people said they loved the info on clusters! yea!!), some people wrote some really nasty stuff. One of the questions I asked was, "What did you like best? What did you like least?" etc. For least, someone wrote, "Your personal stories."
Honestly I didn't even have time for personal stories! When talking about clusters, I did relate it to some aspects of my own life because when talking about "clock like regularity" I just shared the timing of my own attacks when I first got clusters. On the whole though, I didn't really share personal stories. I did also say that, "to put it in perspective, the New Daily Headache Type was what I was diagnosed with at Jefferson as my chronic daily headache in 2001." I told them the exact date and time my headache started as an example of one of the characteristics of that headache.
That's about the extent of my own personal "stories."
Someone also wrote, "You should be more objective."
OMG....the info came straight from sources...but because I can talk about it on a level where I really know it inside and out, I guess that makes me too subjective and the info is suddenly innacurate?
Sometimes nursing students dissapoint me.
Anyways...this is irrelevant to this post, but it did give me one hell of a headache! Sometimes I wonder why I bother with headache education!
Lizzie
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Mr. Happy
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Re: Can I borrow the might of your CH brains?
« Reply #16 on: Mar 17th, 2005, 11:01pm » |
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You learned a couple of good points. No matter what You wanted to present, it was more than could be fit into a short seminar. Cutting the budget sux, but it has to be done.
Next time, have a handout. Even if it's just a few major topic points, with room beneath each for notes or questions. They don't care how much work you've done, they only care about how much work they have to do.
Go study your pharmacology........C+ won't get you into my Meth lab.
==============
Back to this guy with the body spaz. What a gamut of items that could be wrong. Anything from spinal stenosis, to a magnesium deficiency, to sleeping on a rotten pillow. Start at the top of the head, and work your way down. Something's amiss. It doesn't sound like CH - what with the durations, and no CPH since Indo failed. It's the sparking down the arm and leg that generate interest in looking deeper. Oi.
I'm glad I'm not that guy,
RJ
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ivanov
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Re: Can I borrow the might of your CH brains?
« Reply #17 on: Mar 17th, 2005, 11:43pm » |
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This Cluster Headache hemiplegic variant runs in my family.
I get hit around four times a day. They last from a half an hour
to three hours. The hemiplgia run down one side of my body
together with all the typical cluster symptoms. The headaches
also change hemispheres on a regular schedule. This has been
our families curse and I have spent 35 year trying to find some
meds that would work with this type of headache.
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