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        Cluster Headache Help and Support >> Cluster Headache Specific >> SUNCT WTF!
        
(Message started by: Mattrf on May 2^nd, 2006, 9:17pm)

Title: SUNCT WTF!
Post by Mattrf on May 2^nd, 2006, 9:17pm

Ok so I went to a new headache specialist that I got off the list from here.

When I described what was happening to me he said he did not think I had clusters but instead SUNCT
(Short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing) now that is a mouth full. He said since my attracts come during the day and the stabbing and burning happens a lot and last only a couple seconds but I have a persistent head aches during the day that it is SUNCT. He said that it is a lot like Clusters coming in regular intervals and lasting about the same time so it was easy to misdiagnose me as clusters. The down side to this is it, is even rarer then clusters effecting even less people mostly men in there 50’s, ok so my brain is older then my body. Well at least he wants to help me my neurologist was at the point that he just wanted me to go away he never even ran any tests on me and this guy is doing blood work and an MRI and MRA this Thursday so we will see how it goes when I see him next week.

Title: Re: SUNCT WTF!
Post by Sean_C on May 2^nd, 2006, 9:55pm

If those are your symptoms, then my hats off to your nuero ;) Some docs like your priors are strictly in it for the buck, as the old saying goes "next" ;)

I know there's no treatment or cure right now Matt, but it must feel good to know whats really going on in your head.

I hope he can find you some kind of relief now.

Sean.....................

Title: Re: SUNCT WTF!
Post by E-Double on May 2^nd, 2006, 10:19pm

What did he perscribe?

Neurontin???

Title: Re: SUNCT WTF!
Post by Mattrf on May 2^nd, 2006, 10:24pm

Nothing yet waiting on the MRI’s and blood work and probably for the verapamil to get out of my system.

So if it is SUNCT can I still live here?
I have become attached to you guys.
;;D

Title: Re: SUNCT WTF!
Post by Richr8 on May 2^nd, 2006, 10:35pm

on 05/02/06 at 22:24:28, Mattrf wrote:

So if it is SUNCT can I still live here?
I have become attached to you guys.
;;D

Okay by me Matt. We can alway's use the help rowing.

Title: Re: SUNCT WTF!
Post by BikerBob on May 3^rd, 2006, 2:32am

I heard that SUNCT is easier to treat than Clusters. Ask your doc about lamotrigine (125 to 200 mg daily).

Short-lasting, unilateral, neuralgiform headache attacks with conjunctival injection and tearing (SUNCT) is considered an intractable condition. The authors treated five patients with lamotrigine (125 to 200 mg daily), obtaining a complete remission in three patients and a substantial reduction (about 80%) of attack frequency in the other two. No adverse effects were noted.

http://www.neurology.org/cgi/content/abstract/57/9/1723

Yes, you can still live here ;;D

BB

Title: Re: SUNCT WTF!
Post by LeLimey on May 3^rd, 2006, 3:41am

Hi Matt,
According to Professor Goadsby (and other neuro's agree) there is a fine line between Sunct, CH and Paroxysmal Hemicrania, patients who present with classic symptoms of one condition this year could have transmogrified into one of the others by next year and back again.. like a sort of continuum. The interesting part is that meds which work for one condition won't touch the sides of the others so, if your headache pattern changes, it IS worth trying a med you haven't had success with before.
The three above mentioned conditions are all part of the same headache group, TAC's and are related.
I hope this helps a bit! I'm glad to have you here too, its always good to know all sides of the equation :)
Helen

Title: Re: SUNCT WTF!
Post by marlinsfan on May 3^rd, 2006, 8:39pm

on 05/02/06 at 22:24:28, Mattrf wrote:

So if it is SUNCT can I still live here?
I have become attached to you guys.
;;D

Fine with me too! Pain sucks, especially in the head, no matter what you call it!

Congrats on your "cure" from CH! ;;D

Title: Re: SUNCT WTF!
Post by Charlotte on May 3^rd, 2006, 8:44pm

It's OK with me for you to live here.

We still love you, even if we can't say the name of your ha.

Charlotte

ps If it's even rarer, it would be harder to get a support group, and the way dr.s are, they may change it back to ch or something else later.

Title: Re: SUNCT WTF!
Post by Melissa on May 3^rd, 2006, 10:45pm

Matt, you are the 2nd person I know to have been diagnosed with SUNCT. I am still friends with the 1st one, but she does not come here anymore (hasn't for years). The pain is still horrendous, and in my opinion, you are still welcome here!

hugs,
:)mel

Title: Re: SUNCT WTF!
Post by chewy on May 4^th, 2006, 8:31am

Quote:

So if it is SUNCT can I still live here?

As long as you pay the rent and help keep the house clean.

Now I can officially say Matt Suncts.

Title: Re: SUNCT WTF!
Post by Mattrf on May 4^th, 2006, 11:55am

Yes I do Sunct! [smiley=laugh.gif]

Thanks guy I am glad to be here with all you nuts.

Title: Re: SUNCT WTF!
Post by Mattrf on May 9^th, 2006, 6:47pm

Well got the results on my MRI’s and no brain tumor so finally some good news!
They have put me on LAMICTAL (Lamotrigine) he said he talked to some specialists that are supposed to be some of the best headache guys in the country and that is what they said has the best chance of working on SUNCT, sure hope so but at this point I am just dam happy to not have a tumor in my head know what I mean?

Matt

Title: Re: SUNCT WTF!
Post by Charlotte on May 9^th, 2006, 6:50pm

Yep. No tumor is great news.

Charlotte

Title: Re: SUNCT WTF!
Post by danm on May 9^th, 2006, 8:19pm

on 05/09/06 at 18:50:21, Charlotte wrote:

Yep. No tumor is great news.

Honestly, sometimes I wish they would find a tumor in my head. At least then I could have it removed and be cured.....or could die without committing suicide and feeling guilty about it. I'm sure I'm not the only one who's had that feeling here.

Matt: Glad you found out about your condition. Hope the new stuff works for you.

Dan

Title: Re: SUNCT WTF!
Post by BarbaraD on May 9^th, 2006, 8:19pm

Finding a brain was even better news.. ;;D

Hugs BD

Title: Re: SUNCT WTF!
Post by chewy on May 9^th, 2006, 8:24pm

Quote:

Finding a brain was even better news

I dont see anything in the posts that definitively makes that claim.

Hedging bets.

Title: Re: SUNCT WTF!
Post by sandie99 on May 10^th, 2006, 3:57am

Matt,

you're welcome to stay. :)

I'm glad to hear that you didn't have tumor. And great that your doc found out what it causing you pain. I hope that you'll find now a treatment which works. PF time is always PF time. ;)

Best wishes & PF time,
Sanna

Title: Re: SUNCT WTF!
Post by Mattrf on May 11^th, 2006, 4:24pm

Thanks guys and Dan I know what you mean that was how I got into the new doctor the same day I called when he had a 30 day waiting list. Amazing how fast they will see you when you say the word suicide. I am feeling a bit better since seeing him and do have hope that he will fix me and keep me from going back to that dark place we all try to hide from.

Title: Re: SUNCT WTF!
Post by Bob P on May 11^th, 2006, 5:33pm

Quote:

Amazing how fast they will see you when you say the word suicide.

Same thing I used to do to my doc's receptionist.

Me- I need an appointment.
She - How's two weeks from tomorrow?
Me - I'll have committed suicide by then.
She - can you come in today?

Title: Re: SUNCT WTF!
Post by Sean_C on May 12^th, 2006, 7:37am

ROTF Bob ;;D ;;D I'll have to remember that trick [smiley=laugh.gif]

Sean...................................

Title: Re: SUNCT WTF!
Post by Mattrf on May 25^th, 2006, 4:36pm

Here’s an update
I am into my third week on the new meds and have tapered up to two pills a day it is a 10 week taper to full strength. So far I think it has helped my pain level seems to have dropped a bit and I have had a couple hours that I almost felt normal so I am optimistic that this is going to work for me, knock on wood hay and for once not with my head. [smiley=laugh.gif]
I have even been able to throttle back on my pain meds and that is so nice, I am so tired of being on them but just can’t cope without.

Title: Re: SUNCT WTF!
Post by LeLimey on May 25^th, 2006, 4:55pm

It sounds like you are on your way to better days - I'm so pleased!
Thanks for the update, we'll hope for more good news from you soon :)
Helen

Title: Re: SUNCT WTF!
Post by Mattrf on May 30^th, 2006, 2:48pm

Hope everyone had a good three day weekend.
Well I am on two pills a day now and still no bad reaction so I am still alive, at least so far. [smiley=laugh.gif]
This was a decent weekend on Sunday my pain was at a 1 or a 2 almost all day witch makes it the best day since this started and I actually did a bunch of yard work and felt almost like a normal person again. About 8 PM it jumped back up to a 5 or a 6 and that seems to be my norm with this but it was a very nice day for a change. Hope the rest of you had some PF time this past weekend.