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SUNCT back to visit again. (Read 2940 times)
BigMatt
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SUNCT back to visit again.
Oct 19th, 2009 at 10:58pm
 
Hi everyone, it has been a few years since I have been on the site. I was originally misdiagnosed with CH about seven years ago and that was when I found the site and what a god send it was and is as you all know. I was correctly diagnosed with SUNCT a couple years after but still came to the site a bit for support and there is not a better bunch of people out there than all of you. I am now on my this cycle of SUNCT the first lasted one year with a year break then a two year cycle and a fourteen month break and now I am on my third that started back in January of 09 and is still going strong. I met a guy that has CH yesterday and we started talking about this site and nice for him he discovered O2 about four months ago and it is working great for him but he reminded me about all you and I wanted to drop in and see if maybe there was anyone her with SUNCT like myself, I have yet to meet someone else with it and it would be nice to have a companion in pain as it where to talk to and maybe get some new ideas on treatments. So does anyone out there have SUNCT or know someone that does?
I am going to start reading through some of the posts and maybe lend some support if I can, I think I about lived on this site when I first found it, I think it really did save my sanity if not more at the time, I donít think I had ever been so desperate for help and the people here gave it to me and I will always be grateful. Thank you for any help or support in advanced.

Matt
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QnHeartMM
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Re: SUNCT back to visit again.
Reply #1 - Oct 20th, 2009 at 12:40am
 
I'm sorry, I don't know what SUNCT is. I guess I'll have to google it.
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George
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Re: SUNCT back to visit again.
Reply #2 - Oct 20th, 2009 at 2:29am
 
Hi Matt.† †Smiley

I remember.† Good to see you again, although I'm sorry to hear that the SUNCT is back as well.† Same community.† We'll be glad to help if we can.  Sorry--I don't know of any members who are SUNCT sufferers.  As you know, it's pretty darn rare.

Best wishes,

George
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« Last Edit: Oct 20th, 2009 at 2:33am by George »  

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BigMatt
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Re: SUNCT back to visit again.
Reply #3 - Oct 20th, 2009 at 10:35am
 
(SUNCT-Short-lasting, Unilateral, Neuralgiform headache attacks with Conjunctival injection and Tearing)

Thanks for the welcome back George, yes it is a bummer I am back as it is for all of us here when we find ourselves needing support. I was hoping that my SUNCT was stress related and would not come back after I got my divorce but I was wrong. I was nice enough to let my X know that it was back and it was not caused by her, she actually said she was sorry and actually had hoped it was her. I did find a great lady I am dating now and she has been very supportive I will have to get her to drop in but so far this cycle has not been as bad as in the past so stress may have made it more intense and since I have very little stress in my life right now I am dealing with it much better. I am just hoping that this cycle does not last two years like the last cycle did. I am still working as an IT manager at Stanford and the people here are great and very understanding, not sure if anywhere else would be so nice and let me have the space I need. If they see the light in my office out they know it is a bad day and they tend to leave me alone unless it is urgent. I still have the same pain management doctor and he is also great and keeps looking for new treatments to try on me and I even took my girlfriend to my last appointment to meet him and so she could ask any questions she may have had, it is a lot to ask someone to deal with this crap especially right off the bat, she has never seen me pain free and not on medication since we have only been together for 5 months now. I keep telling her if she thinks I am great now wait until she sees me pain free and medication free. Lol Well that is enough for now, glad you guys are here to listen and I am planning on hanging out for a while if that is ok with everyone.
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Opus
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Re: SUNCT back to visit again.
Reply #4 - Oct 20th, 2009 at 7:27pm
 
Matt,

† †I believe that someone I know has SUNCT (not diagnosed), well all the symptoms but the tearing, but her face does get hot. She is working on triggers. Alcohol is one and possibly her vitamins. O2 works but it doesn't stop the next attack and taking 15 seconds out a 30 second attack doesn't really help much.† There is a treatment Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register but convincing a Nero to try it maybe hard. I hope you find relief.

Paul
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« Last Edit: Oct 20th, 2009 at 7:29pm by Opus »  

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BigMatt
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Re: SUNCT back to visit again.
Reply #5 - Oct 20th, 2009 at 9:42pm
 
Hay Paul

I would be glad to talk to your friend and if they do have SUNCT I would love to talk to them since I have never met someone with it and it would be nice to have the opportunity. My email is mattrf@Yahoo
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BigMatt
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Re: SUNCT back to visit again.
Reply #6 - Nov 20th, 2009 at 11:03am
 
Opus I did get an email from a gal I can only guess it was your friend, I have sent her two emails but have not heard anything back from her yet?

On another note sure could use some vibes today, the new med seemed like it was helping but woke up today with a screamer and it is still going strong. I made it to work but can only think of how nice it would be to be home curled up in bed with the covers pulled over my head. I have missed way to much work this past 11 months from this cycle and just do not want to put my job at risk by missing more work. I know I am winning and I know your guys hits hurt way more than mine but mine are steady and this will last for hours if not the entire dam day and it does hurt, thank god for the pain meds but even with that it hurts like hell. I have been thinking about doing the shroom thing to see if it will break my cycle but have struck out on finding any, this would be easy if I was still in high school. Lol Man I need a break, I canít remember the last time I was PF even for an hour and I think I am heading for a rubber room at this rate. Sorry for rambling like this, it happens when I am in this much pain. I can at least be thankful it is Friday and I will have a couple down days to try and regroup and I hope recharge if the headache mellows out a little, a little would be nice not asking for more just a little so it is tolerable would be good, there I go rambling again. OK done for now, PF wishes to all of you and I hope everyone has a good weekend.
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lorac
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Re: SUNCT back to visit again.
Reply #7 - Nov 20th, 2009 at 11:52am
 
Hey Matt...I think I remember you from a couple years ago..
  What kind of meds are you on.??    Don't know much about sunct yet, but it sounds just as damn bad as CH.
   Hope your cycle is short this time, and have a great wknd.               lorac
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BigMatt
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Re: SUNCT back to visit again.
Reply #8 - Nov 20th, 2009 at 12:16pm
 
Just started on Lamictal. Had to start at 25MG once a day and increasing by one pill every three days until I am up to 3 in the mmorning and 3 at night, right now I am at 2 and 1 so I am still hopeful that when I get to full strength it will help but right now it is not at least not that I canít tell since my left eye seems to want to pop out of my head right now. Embarrassed
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« Last Edit: Nov 20th, 2009 at 2:44pm by N/A »  
 
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Re: SUNCT back to visit again.
Reply #9 - Nov 21st, 2009 at 11:16am
 
Hey Matt, I remember you from here.  Sorry that you have had to return with this pain Sad  Hopefully you will find a winning combo for treatment.  I can't remember who off the top of my head, but there are (I think) 2 others here that have SUNCT.  I'll try to dig around and find their posts and if I do I'll direct them to this thread so you can chat with another who suffers.

Do stick around, it may not be CH but you started out here as a clusterhead, and once we take you in, well you are kinda stuck with us Wink

Hoping your weekend is providing you with some much needed respite and you are able to regroup and recoup a bit.

Cat
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Opus
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Re: SUNCT back to visit again.
Reply #10 - Nov 21st, 2009 at 10:12pm
 
Matt,

   She is getting over H1N1, and has had a 6 day migraine. It may be a few days.

   I am glad your getting Lamictal. Sorry to hear it took you so long to get it.

Paul
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BigMatt
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Re: SUNCT back to visit again.
Reply #11 - Nov 23rd, 2009 at 1:04pm
 
I had a good weekend very light on the hits for the most part and a much needed break in the more severe pain I have been dealing with lately. I tried the morning glory seeds but felt absolutely nothing from it and no difference in the headaches, I am still hoping to find something else to try and break my cycle. The Lamictal still does not seem to be helping and I am at ĺ strength right now but still hoping at full it will help me.

Opus, hope she gets over it soon and the Migraine goes away, that has got to suck to have both at one time.
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BigMatt
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Re: SUNCT back to visit again.
Reply #12 - Nov 24th, 2009 at 11:53am
 
I had forgotten my old ID and did not want to look like a Newbee so I dug around and found my old ID so BigMatt is back to just Mattrf and no longer a newbee.
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There is no stronger a person then one who can deal with brain pain and still function.
http://www.facebook.com/#/home.php?ref=home Mattrf  
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BigMatt
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Re: SUNCT back to visit again.
Reply #13 - Dec 2nd, 2009 at 4:36pm
 
I was really hoping the past four days of lesser than normal pain was due to the new medication but today I am getting hit time after time while at work and it sucks! Embarrassed
You try not to get your hopes up when they try something new and tell yourself you wonít but you do hard not to and the crash back to reality really sucks. Angry
I really hate this guy in my head you know the one, he has a sledge hammer and likes to use it.
Smiley
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There is no stronger a person then one who can deal with brain pain and still function.
http://www.facebook.com/#/home.php?ref=home Mattrf  
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BigMatt
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Re: SUNCT back to visit again.
Reply #14 - Dec 16th, 2009 at 12:30pm
 
Well chock up yet another medication that did not work. The doctor wanted me to work up to 5 pills twice a day from three twice a day and I only got to 4 and started feeling sick all the time and getting dizzy and still have my headaches so not going to continue with this medication.
I also tried the Hawaiian woodrose seeds last weekend and all I can say is I will never do that again, dam did I get sick and felt like crap for about 16 hours not fun at all. Yes I am that desperate to get rid of these dam things. Well I am coming up on the one year mark and hope this cycle is like the first and is only going to last a year and not be like my last cycle that lasted two years, not sure I could take another year of this constant pain in my head.
Well I hope everyone enjoys the Holidayís and get some PF time during them and hope I do as well.
Cheesy
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There is no stronger a person then one who can deal with brain pain and still function.
http://www.facebook.com/#/home.php?ref=home Mattrf  
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Re: SUNCT back to visit again.
Reply #15 - Jul 7th, 2018 at 10:09am
 
How are things going BigMatt? I found you by searching forums for keywords "same symtoms as CH"

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