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(Message started by: bobeastman on Jun 8^th, 2004, 12:55pm)

Title: curious, could use some opinions
Post by bobeastman on Jun 8^th, 2004, 12:55pm

afternoon all,

my girlfriend just started to have head pain that, given the first run of research i did, sounded a bit like an acute type of cluster headache (it was only after the pain started that she mentioned she'd had them last year, almost exactly a year ago). since then i've been knee-deep in the world of head pain, and think that she may have a different sort of condition.
they're definitely clusterish, as they're episodic and lasted for a few weeks or two months the last time she had them. they're always in the same place - mid/back left side of the head - and when they begin she feels like she does at the start of an allergy attack. however, the pain is far more abrupt and consistent than everything i've read about clusters. for example, the pain she has only lasts one to two seconds, but it comes every minute or two, and fairly consistently. it's worse when she's laying down. as they weren't that bad last year, she didn't try any medication - she had gone to a neurologist to rule out a tumor, but that was it - and so, given the relatively short nature of this current pain, she has yet to get anything prescribed and it's too soon to see if water helps.
again, in the painfully brief time i've had to look into this online, it seems that she may have something more of a paroxysmal hemicrania than actual cluster headaches (though they're both somewhat similar). she went to a neurologist today and he gave her some steroids and told her to get an MRI.
now for my questions:
- does an MRI really help in a situation like this? from everything i've read it seems neither CH nor PH are tumor-related, or malignant in any way. is the doctor just making sure to rule out any possibility of this? it seems like an expensive means of eliminating what's virtually the obvious.
- do any of you either have, or support someone who has, pain that's similar to this? i'm still trying to pin down the nature of CH - which apparently may be impossible - to see if we can figure out what sort of head pain she actually has, to then see what the best means of treatment is (as if it's a PH, then indomethacin is touted as being a stellar option...if CH, well, we'll see what works).
i appreciate any and all information or advice you could provide. ask any questions you'd like. say anything you like. thanks!

the eastman

Title: Re: curious, could use some opinions
Post by UN_SOLVED on Jun 8^th, 2004, 1:20pm

"Pain in the mid/back left side of the head."
"the pain she has only lasts one to two seconds, but it comes every minute or two"

These do NOT sound like cluster symptoms.
An MRI is a good thing to have and it is done to rule out any other (possibly serious) problems. CH will show nothing on an MRI (it will be normal).
I do not (as probably most of us here) have pain symptoms like you've described. Sorry I won't be much more help.
Check back in a while. Possible someone else can reply and be a bit more help.

Unsolved

Title: Re: curious, could use some opinions
Post by Filbert on Jun 8^th, 2004, 1:21pm

Hi Eastman and welcome to the board. Sorry your girlfriend is suffering at the current time.
You are right CH and CPH are not related to tumours and the MRI is usually done to rule out anything sinister.
I must stress I am not a doctor but the duration of the headaches seem short even for CPH and you might want to consider SUNCT headaches [Short lasting Unilateral Neuralgiform Headache with Conjunctival Injection and Tearing] which usually last for2-250 secs.If you click on the OUCH website link on the left and go to OUCHUK there is more info there under the headache section.
I could well be wrong and your top priority is to try and get a proper professional diagnosis.

All the best Filbert

Title: Re: curious, could use some opinions
Post by Giovanni on Jun 8^th, 2004, 1:27pm

Hello,

Clusterheadaches generally last from 30 minutes to 90 minutes to two hours. Generally short multiple intense headaches would indicate CPH. BUT, to make sure, make an appointment with a neuroligists that specializes in "headaches".--The others sometimes do not have a clue to these headaches or their treatment. If it is CPH it can usually successfully be treated with Indomethacin--a non steriod anti inflammitory medication. The MRI is a good idea to rule out other causes (ie tumor) of the headache. Here's a link on CPH:

http://headaches.about.com/library/glossary/bl-chronic-parox.htm

Good luck,

John

Title: Re: curious, could use some opinions
Post by bobeastman on Jun 8^th, 2004, 1:31pm

thanks for the info so far. i'm just getting into looking at SUNCT - like i said, i've only been on this for about two days...i figured i'd speed my education along by coming here, and already it's a decision that's paying off. if it is SUNCT, are there any good types of treatment or prevention? or is this a question for another type of board?
regardless of the type of condition, is a neurologist the best type of specialist to see, or is there an even more specific sort of practitioner who handles this type of head pain?
(disregard this last part, mainly, this was posted after John's message....thanks John)

Title: Re: curious, could use some opinions
Post by Giovanni on Jun 8^th, 2004, 2:03pm

Some links on SUNCT:

http://www.ninds.nih.gov/health_and_medical/disorders/sunct.htm

http://imigraine.net/other/sunct.html

http://accessible.ninds.nih.gov/health_and_medical/disorders/sunct.htm

http://neuro-www.mgh.harvard.edu/neurowebforum/GeneralFeedbackArticles/12.1.9611.35PMClustersSUNCTorw

Title: Re: curious, could use some opinions
Post by mynm156 on Jun 8^th, 2004, 2:12pm

welcome

I hate to say this but I think that there is a rather good majority of us who have gone through these batteries of tests. I my self have had Cat scans, blood work, sleep studies, MRI all to help rule out the any other cause to these pains.

If there is a finacial issue such as No Issurance that needs to be made clear to the Doctor and there may be some other approaches he/she might want to look into first.

Sorry that your girl friend has this pain. Good luck

MYNM156

Title: Re: curious, could use some opinions
Post by bobeastman on Jun 8^th, 2004, 2:43pm

again, thanks for the continued responses.

mynm156 - sweet Fett icon, by the way - it's not an issue of insurance, as she has it and i believe it covers MRIs, just a general curiosity on the reasoning behind the procedure.

john - the additional links were helpful.

with a little more under my belt, it seems that she may be suffering from SUNCT (has SUNCT? what's the proper terminology?). will a neurologist worth his or her salt pick up on this, or will he or she see it as something else? in other words, should she go in to her next appointment versed in this information, and fairly persistent about it, or should she trust that the doc will see things for what they are?

you guys are magnificent.

east

Title: Re: curious, could use some opinions
Post by floridian on Jun 8^th, 2004, 2:56pm

Check out TAC - trigeminal autonomic cephalgia. These are short/intense headaches that might fit her symptoms.

99%+ of the time, there is no tumor. But there have been a few cases of trigeminal pain from cancer growths - including a rare few cluster headaches. There could be something else out of place - a blood vessel ballooning, a calcium deposit, etc. Again, not at all common, but many doctors want to rule these things out.

If your girlfriend has had them for years, only at one particular time of the year, then its probably not from an aggressive cancer pressing on the nerve. Tell her to relax, and ask the doctor why he wants an MRI. Maybe there is some reason, if only fear of lawsuits.

Title: Re: curious, could use some opinions
Post by pubgirl on Jun 8^th, 2004, 8:23pm

Floridian is right (as usual ;;D)

The symptoms as you describe could fit several of the TAC's (PH/CPH/SUNCT/TN)

You need to read up on them all and see which her symptoms fit best as they are all different, and have different treatments. Luckily it pretty much surely isn't CH as the attacks are to short, but that's good news because most of the other TAC's are more easily treatable.
Another reason for doing this is sadly, unless your neuro is a headache specialist, they may well misdiagnose and mistreat. :(

Good luck getting a diagnosis, it is the first crucial step before they start plugging her full of drugs

Wendy

Title: Re: curious, could use some opinions
Post by eyes_afire on Jun 8^th, 2004, 9:09pm

Here are some of my favorite links on some various headache types which may or may not be related to cluster headaches:

cluster headache:
http://www.upstate.edu/neurology/haas/hpcldx.htm

chronic paroxysmal hemicrania
http://www.upstate.edu/neurology/haas/hpcldx.htm#cph

SUNCT syndrome
http://www.upstate.edu/neurology/haas/hpstab.htm#sunct

idiopathic stabbing headache
http://www.upstate.edu/neurology/haas/hpstab.htm

hemicrania continua
http://www.upstate.edu/neurology/haas/hphemi.htm

trigeminal neuralgia
http://www.ninds.nih.gov/health_and_medical/disorders/trigemin_doc.htm

hypnic headache
http://www.mhni.com/faqs_unique.htm#hypnic

exploding noise
http://www.mhni.com/faqs_unique.htm#exploding_noises

DISCLAIMER: This is no substitute for a diagnosis. See the neurologist for a diagnosis. This is only to point people in the right direction

--- Steve

Title: Re: curious, could use some opinions
Post by bobeastman on Jun 9^th, 2004, 11:06am

i'm going to continue heaping thanks upon all of you, so get used to it.

so the neurologist she went to yesterday basically flat out told her she wasn't dealing with CH...which, as we've seemed to determine on here, she's not...so hopefully the guy's worth his salt. he's part of an area neurology center, which is encouraging. anyway, he gave her some steriods, and she's got the MRI scheduled for next tuesday. the steroids have definitely decreased the frequency of the pain, but haven't done much for the intensity (not that she's complaining).

a ridiculous question: do any of you know if water is as helpful with TACs as it can be with CH? i ask because when she first felt the pain i came to this site and found the water link, and figured it was the only immediate thing to try between the onset of her pain and her trip to the doctor. however, if it turns out that water doesn't do much, i'm going to have to have a good laugh about making her wear a path between her desk and the bathroom at work. and, angel that i am, i've been drinking 'sympathy water,' and have probably made people at work wonder why i'm running to the john so often. at least it's not something that could be bad for either of us...

Title: Re: curious, could use some opinions
Post by Prense on Jun 9^th, 2004, 7:00pm

Is the neuro reserving diagnosis, waiting for the MRI results or just at a complete loss? You have me curious.

Chris

Title: Re: curious, could use some opinions
Post by bobeastman on Jun 10^th, 2004, 11:36am

chris - it seems that he's just waiting for the MRI before getting into anything. from her reports he didn't seem baffled or at a loss for anything when talking to her. last year when this happened for the first time the other neurologist suggested an MRI, but more because of procedure than because he had no idea what was going on.

on a strange, but positive note - i would imagine - not only have the steroids reduced the frequency of the pain, but as of today there's nothing much to report. yesterday they were far, far less frequent, and she was left with a light headache, and today, nothing. this is certainly encouraging, however i'm still a little curious given that it's occurred twice in two years now, at the same time.

Title: Re: curious, could use some opinions
Post by Gator on Jun 11^th, 2004, 4:11am

I am sorry that your girlfriend has been getting hit like she has, and I must commend you on your support for her. Every sufferer of any disease, disorder, whatever should be so lucky. It's people like you that make it just a little easier to live with whatever condition they might be suffering from. Thank you for being there for her.

I have no personal experience with the symptoms your girlfriend is showing. From the reading I have done it sounds more like SUNCT than anything else, but I am not a doctor.

As far as the MRI, if she has insurance that will cover it - I'd say go for it. It will help rule out organic causes. Same for any other test he may want to run. I've had MRI, blood test, dental examinations, eye examinations, the works. Never hurts to explore all the possibilities.

Knowledge is power. Keep on reading and give your girlfriend everything you find to take to her neurologist. She needs to take an active part in her treatment so she will know whether she is being taken seriously and if the doc knows what he is talking about. You may have to go through more than one neuro before you find one that does know his schtuff.

Good luck on your search and with her treatment.

Gator

Title: Re: curious, could use some opinions
Post by kimmiedawn81 on Jun 12^th, 2004, 1:49am

I wish my boyfriend would be so kind to do things like that for me, such as research, althout he is driving me to my neurologist appt. Monday, in St. Louis. I hope that your girlfriend finds the help that she needs. Good luck and keep up the loving support, it's a big help.
~Kim

Title: Re: curious, could use some opinions
Post by bobeastman on Jun 22^nd, 2004, 2:47pm

ok, so we have some updates....

she got the MRI last week - and, on a side note, the charge was totally waived, which is pretty cool - and went in to see the neuro again this morning.

but i'm getting ahead of myself.

as i believe i mentioned, since she went in to see the neuro before she had the MRI he gave her steroids as he couldn't prescribe her anything else without more information to go on. she took the steroids and, boom, the constant pain was gone. steroid prescription lasted a week - at which point she had the MRI done - and the pain was gone after the prescription had run out. then, last friday night, they came back, slowly at first, but building up to the same frequency and intensity as before. she got a phoned-in prescription for a steroid refill, and the pain's been held at bay since saturday.

SO...she went in today, got the MRI read, no tumors or wrenches in the brain, etc. the neuro came to the conclusion that she has migranes, and prescribed her something whose name i don't know yet.

not sure what to think of this, as i've read quite a few posts here that have mentioned doctors calling something a migrane that, in actuality, is nothing of the sort. if you've read through this post you've learned that her symptoms sound like some sort of TAC, or *something* besides migranes. i'm not trying to undermine the doctor's diagnosis yet...who knows, it *could* be the case, and this stuff could work. i'm just a little wary given the experiences i've read about on this board. anyone know of migranes getting knocked out cold by steroids? think she should try the medication out, or go get a second opinion while her steroid prescription's still full? i'll take down the name of what she got prescribed tonight, and post it tomorrow...

Title: Re: curious, could use some opinions
Post by Kris_in_SJ on Jun 22^nd, 2004, 4:00pm

Hi Bob,

I hate to muddy the waters further, but I had something similar happen to me in my teens. They finally traced it to low grade, but nasty sinus infections brought on by my early summer allergies. I only bring it up since steroids seem to make your girlfriend feel better - that could indicate an inflammation somewhere in there. I'll be anxious to hear how her new medicine works.

Here's hoping for the best!

Kris

Title: Re: curious, could use some opinions
Post by bobeastman on Jun 23^rd, 2004, 11:16am

ok, so the doc prescribed verapamil (i believe 80mg). this was yesterday, so i have no information to provide concerning its effectiveness or anything, so we'll just have to see.
guess we'll see how it goes...
(go red sox)

Title: Re: curious, could use some opinions
Post by Prense on Jun 23^rd, 2004, 11:56am

Well, verapamil is a relatively tame med if she doesn't have low BP already. That is a very low dosage as well.

I just want to make sure I am understanding you correctly...

The doc diagnosed migraine (or at least a form of it) and then prescribed verapamil?

Chris

Title: Re: curious, could use some opinions
Post by bobeastman on Jun 23^rd, 2004, 12:47pm

chris,

yes, my understanding is that he looked over her MRI results, assessed her pain/situation, and then diagnosed either migrane or a type of it. i'll talk to her again about it and get exactly what he said. then he wrote a prescription for verapamil, and i believe it's 80mg...it could be 180mg, as i was more concerned with translating his Doctor Script™ to english than looking over dosage numbers. thankfully my dad was in the air force, and military types have equally as bad handwriting. i'll grub up some more info, and post it when i find out, just to confirm.

Title: Re: curious, could use some opinions
Post by Prense on Jun 23^rd, 2004, 1:48pm

lol, ok...even 180mg is still low (at least for CH). Many times, docs prescribe a beta blocker for migraines vs calcium channel blocker (verapamil). Verapamil is generally tried as a preventative for CH, but admittedly, I know very little about migraines.

Chris

Title: Re: curious, could use some opinions
Post by bobeastman on Jun 23^rd, 2004, 2:49pm

just got off the phone with her, and apparently the diagnosis was good old, regular, missionary-only, 9-to-5, white bread migranes. her steroids run out on friday, at which point she'll switch over to the vera. i keep telling her just to 'Roid Rage on her head pain - whatever type it really is - and just wail on it with the blind, red anger that comes with the drugs. nothing of that sort yet.
anyway, i'm not suspect of anything yet...even though i've never heard of quick, stabbing, localized migranes that go all day and last for two seconds at a time. hey, if the vera works, it works.