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Possible Cluster or SUNCT, help!

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Old 03-18-2013, 12:45 PM   #1
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Posts: 15
miamigirl000 HB User
Possible Cluster or SUNCT, help!

Hello everyone,

as to not make this post to long, let me get straight to the HA picture.

I started having "normal" migraines at age 35 after a total hysterectomy. I am now 40 yr old. Two years ago, I had an episode where i was driving, became confused, lost, and ran over a yellow parking pole. When i got home i was struck with a horrid HA, and my left eye started drooping. AT the ER i had MRI and Lumbar Puncture, no stroke, so they said migraine and sent me home.

Over the last two years now I have had constant daily HA. Pain usually runs between 2-3, all day, just enough to bug me, but almost everyday i will have "flare ups" of the pain. This pain will usually run between a 6-8. I have only had it hit a 10 twice.

I have gotten into these cycles where i will get these increased headaches that come and go thru the day, but for weeks on end. By the time I hit the 2 week mark, i end up in the ER. Treatment of OXYGEN, MAG, STEROIDS, FLUIDS, and PAIN/NAUSEA meds will almost always break the cycle of the higher pain, then leaving me back to my daily low level HA. With EVERY cycle, it is ALWAYS on the left side, behind eye and just above eye, into temple, painful neck, left eye droops and so does the eyebrow, eye tears, and nose is stuffy. I do suffer from aura type symptoms as well, light, noise, nausea.....

I have been treated with Depakote, Amatriptline, Imiprameen?, Effexor. I currently used injectable Imetrex statdose, which works fairly well....It was thought i might have hemicrania continua, but i failed the indotest.....

My question is, and i really don't want to offend anyone who suffers from Cluster Headaches, but is it possible to have CH and not have a 10 on the pain scale everytime? Is it possible that maybe i have developed a "high pain tolerance" due to other things? I have heard that CH is worse than child birth...I have had two children, and that was NOT my worst pain of my life, my hysterectomy and two following surgeries within 12 mo. was indeed the worst pain of my life. I also deal with "chronic pain' due to a severe foot injury by ride on lawnmower, so maybe my level of pain is different???? I will say that at an 8, it can make me cry, I am depressed from living like this, and while I would never act on it because i have children, I have certain thought of ending my life due to all these headaches. I have also had thoughts of wanting to bang my head aganist a wall....never acted on it, but that's sorta scary.

I feel like the length of my HA in the higher pain fits more towards Cluster Headache than SUNCT, which should be peaks of only seconds to minutes....

so, really what i would like to know is

1. Can Cluster Headaches go for two years?
2. Can CH suffers have daily low level pain, or are you completely painfree until attack?
3. Does pain level have to be so intense to reach a 10 everytime?

Thank you in advance for any insight you all can give me. I am desperate at this point. I got for my first Botox in two days, and at that time i will talk to the doc about a lidocaine nasal spray i have heard can help....
Wishing you all a pain free day! Shannon

Last edited by miamigirl000; 03-18-2013 at 04:55 PM.

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Old 03-18-2013, 02:19 PM   #2
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Join Date: Mar 2013
Location: Raleigh
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praybelieving HB User
Re: Possible Cluster or SUNCT, help!

yes, you definately sound like you have chronic HA's. I'm sorry...I feel for you. I know how you feel to have some kind of pain daily. I go back and forth bn migraines and tension hA's....almost every single day now. My HAs are from a 2 to a 10++. I actually had an accidental overdose bc I was so delerious after my 16th day of migraines...(can read about it in another thread)....I'm blessed to still be here. At the same time, I know exactly what you feel when you say you wouldn't leave your kids, but think it would be nice to just end the Head pain for good...and I too have had thoughts of getting on the floor and pounding my head on the can the pain get any worse, right? But my love for my family keeps me grounded...we have guns around and they are no temptation at all. I could never do that....but it's hard not to have thoughts of being pain free. I think I said in another post, since migraines are not deadly or harmful and I hate to wish ill on anyone, I do wish all of our treating physicians could have one migraine to understand us.

Yes, chronic HAs can last that long and no they don't have to be a 10 every time.

Hope the botox works....I haven't done that yet and am thinking about it...wonder if medicare covers it?? I'm disabled and chronic migraines is one of the reasons.

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