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08/23/2010 08:20 AM

SUNCT

Mattrf
Posts: 17
New Member

My SUNCT started over 8 years ago, I thought I had a sinus infection since I have suffered from Sinusitis since I had suffered from this since the age of 8. They did a CT on me or an MRI I have had both and not sure which was first, anyway there was nothing wrong with my sinuses. The head pain was localized to the left side of my face and the pain was around and behind my left eye, I also have a strange numbness feeling just on the left side of my face going from my eyebrow to my jaw line and right down the middle, I can feel it on the left side of my tong and teeth but not the right, I have a constant headache that only seems to change in intensity it goes from throbbing to ice pick like stabbing or red hot poker type pain. At about 6 or 7 months in I remember the doctor saying something about Cluster Headaches but did not know it was a diagnosis and at about a year they went away. I had about a year with no pain or symptoms then one day it just came back and again I thought it was sinus problem and again went through test only to find out my sinuses were fine. He again said Cluster Headaches and I listened to him this time and found a website called Clusterheadaches.com, the site was a life saver I told the doctor about all the treatments even O2 and we tried them all but nothing worked. At this point my doctor said he could no longer prescribe pain medication for me and I needed to see a headache specialist and he referred me to one in my area. On my first visit the doctor after hearing my symptoms said he did not think I had CH but it was SUNCT, he tried to treat me with everything he could think of but between no effect and bad side effects nothing worked. He had me go to the Mayo Clinic in AZ to see Dr. David Dodick who he said was one of the best headache doctors in the US. Dr Dodick also said it was SUNCT but the only thing he found was that my Testosterone was low but treating it did not make any change to my headaches, he also videotaped me for a symposium he was doing in London. The second cycle lasted about two years then I had 14 months with no pain, but in January of 09 the headaches came back and now I am at a year and a half and still in pain. I see a pain management doctor now since the headache doctor did not want to just keep giving me pain medication to treat my headaches. The only thing that has helped the headaches was when Dr. Wilkosky my pain management doctor put me on a Lidocaine drip and while I was on the IV I had no symptoms or pain but as soon as he stopped the drip within about ten minutes the pain returned, we tried this again at a higher rate and I could not open my eyes it was not fun and again when he removed the IV the pain came back.

I am mail 47 years old in decent shape physically, I do not smoke and only drink socially.

I work as an IT manager at a medical research center but there are no chemicals here and the headaches started while I was working at another company. I am able to sleep even when in pain strange but glad I can and when the pain gets bad I tend to curl up in a ball and try to sleep through it. Although I do have some severe attacks most of the time I can function and have been able to work and keep my job, I am not someone that wants to go on disability and do all I can to stay functional so I can keep my job. I have never had any addiction problems although my physical dependency on the pain medication is hard to avoid with such long periods of being on them but both times so far when the pain stopped I stopped the pain medication right away, I truly hate being on them but have no real choice since without them the pain would make it imposable for me to function well enough to work. I am desperate to find something that works, a friend saw the episode on headaches so I found it on the website and watched it, I did laugh at the pepper nose spray since I had tried that myself with the same reaction as the doctor did. Any information about something that would help would be great. I would love to talk to anyone who has SUNCT to compare notes and to support each other, it is nice to know we are not alone in this fight against a monster we cannot even see.

Matthew Franzen

mfranzen @ Stanford.edu

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08/23/2010 09:20 AM
MaryR
MaryR  
Posts: 4181
Group Leader

Hi Matthew, Welcome to the group. While I personally do not have SUNCT, you are certainly not the only person on this forum that has it. I have NDPH which is another of those rare, difficult to treat headache conditions that nobody wants to have.

I am going to see if I can find some of the threads where the people with SUNCT posted a lot so you can find the others more easily. You can also private message any of them once you have their screennames to see what they are doing now. Some of them may be in between episodes and not be on much right now, but might still respond to a PM.

http://www.mdjunction.com/forums/ndph-support-forums/ general-support/156701-suncts-syndrome

http://www.mdjunction.com/forums/ndph-support-forums/ general-support/169298-sunct-syndrome

I can understand completely why you hate having to be on the pain medication, but it is working well enough for you to be able to keep your job (with tremendous effort I am sure) so that is a really good thing. Still it isn't the same as being able to actually stop the pain, it just masks it a little or takes the edge off for a while. NDPH is kind of the same, it is really rare to find something to stop it, so most of us are working to find something that will take the edge off of it and make it more bearable (though I don't know how the pain levels compare to begin with).

So while our monsters might have different names, you are definitely not alone in this. While we can't always help with what treatments work best, we have found that it doesn't make that much difference which chronic headache condition a person has when we are supporting each other, those of us who are in pain every day seem to deal with a lot of the same issues whatever label our headaches get. So welcome to the group I think you will we are a friendly bunch.


08/23/2010 10:02 AM
Mattrf
Posts: 17
New Member

Thank you for the welcome, the CH site I found has been a life saver for me and even though I do not have CH they all know that SUNCT is a close cousin and have allowed me to stay and have supported me like one of their own and cannot say enough good things about them and anyone with CH should go there for support, just wish there was something that worked for SUNCT but there is not. My doctor put me on Fentanyl patches for a time release pain medication, all the pill forms seem to not agree with me and after a month or so I start feeling very sick from them but so far the patch is helping. He just bumped it up from .5 to a .75 and it really does seem to help a lot but since my pain level goes up and down all the time it is hard to tell if it is the patch or if I am just in a low trend right now, I am hoping it is the patch. This cycle started in Jan of 09 so I am a little desperate for relief but I am dealing with it and have a great supportive girlfriend to help me get through it all.

08/23/2010 03:24 PM
MaryR
MaryR  
Posts: 4181
Group Leader

I know there have been others here who have found the patches helpful (though not always easy for them to use if their headache happened to be under hair) so hopefully it will continue to be a good thing for you. Having good support makes a world of difference too. My family has been great with helping me through my headache so far.

08/23/2010 04:34 PM
Enbee
EnbeePosts: 1556
Senior Member

Hi Matthew and welcome! I also have NDPH but as Mary said, most of us here have similar symptoms and problems, just with different names.

I'm glad your girlfriend is supportive. Having someone to lean on and talk to is very important. It sounds like the fentanyl patches are helping somewhat. I haven't tried them but I know when I've had fentanyl for anaesthetics (I've had a few surgeries since my headache started) it doesn't help me at all. Others seem to get some relief though.

Welcome again and feel free to ask any questions.


08/24/2010 08:56 AM
Mattrf
Posts: 17
New Member

The patches take like 6 hours to get into your system and you have to really give them a week to really get up to full strength in your system to really notice the help, so my doctor told me. I started feeling the help after a couple days and I think they still are helping but I still take Oxi for fast acting relief and I need it all day but I have been able to cut back a bit on them because of the patches. The main thing the patches help with is getting up in the morning, without them as soon as I open my eyes I am reaching for my pills and have to stay in bed for at least 30 minutes until they start working and the headaches mellows so I can start my day. Many bad things with waking up this way, first it just sucks to wake and already be in pain, second it tends to make me far more depressed when there is no feeling of any kind of a break from the pain and I tend to have to take far more pills but with the patch I can wake and all though I still have my headache it is far mellower with the patch on and I am able to cope much better and the depression stays in check for the most part. I still fight it all the time no way around it when you are in pain basically 24 hours a day for as long as I have been this cycle, I hate to even think about how long it has been, 20 months now, wow,20 friggen months I don't think many people can even grasp what this is like or how hard it is to deal with, like they say what does not kill us makes us stronger and I think I am going to become Superman at this rate. Lol I really do not even think my girlfriend even really gets it, I am good at hiding my pain most of the time, it is just far easier than answering a bunch of questions from people and I force myself to keep having as much of a normal life as I can and I stay active instead of doing the hermit thing, I did that my last cycle and only left the house to go to work and the rest of the time I just tried to hide in my room in the dark but that is no way to live and just makes the depression even worse. I promised myself when this cycle started that it would be different as far as how I dealt with it and that I would fight it with all my might and do everything I could to not let it run my life and do the things I should be doing if I was not sick and so far I have, even went and plaid tennis with her last night in 90+ heat but it was a nice workout and felt good but like I said I have to force myself because it would be very easy to just say screw it and go lay down in my room and stay there until it was time to go to work again. The beast in my head may be able to hurt me but he will not kill me and will not control me, it is a mantra I am constantly repeating n my head every day.

08/24/2010 06:04 PM
Enbee
EnbeePosts: 1556
Senior Member

Unless people have 24/7 pain themselves they don't really understand what it is like, no matter how hard they try Smile Your are right that it is usually easier to just hide and do nothing due to the pain, but life isn't much fun that way. So, I try and do some things from time to time, even though it usually makes things worse. It sounds like you are approaching it the best way you can!

08/25/2010 11:38 AM
Mattrf
Posts: 17
New Member

It is what it is as I like to say. Came into work today and after having a not to bad pain wise four days in a row at about 8:00 AM it started ramping up, always seems that when I get a few good days the little monster makes me pay for them and that is what he is doing now. I did make myself ride my bike over to the gym and get in a workout just now even though my head hurts and I really did not want to. Just started going back to the gym two weeks ago and I am trying hard to keep at it, I was a very avid gym goer for most of my life but this SUNCT has caused me to stop and have not been consistent at it for the last eight years and really want to get back to it. I know being in shape will not make it go away but it should make me happier and there for a bit easier to deal with it , at least I hope it does if nothing else my girlfriend will be a little happier and that is always a good thing. My girlfriend is a jogger and is very fit and likes to be active so it makes it easy for me to stay fit since we are always doing things like playing tennis or bike riding, walking and just about anything else that makes us break a sweat. I just keep forcing myself to do these things and even if I feel worse physically after it makes me feel better mentally and that is a big thing these days. Well I hope I will not pay to dearly, I have relatives passing through town and have a 1:00 lunch date with them and really would like to enjoy it.

11/12/2010 09:10 AM
Mattrf
Posts: 17
New Member

I got a call back from my pain doctor who I really trust and talked to me about this shrink with the shock treatment that he says he has had luck with treating migraines with. He basically told me since we had tried everything else at this point that he really felt this was worth trying even if it is expensive, he said he thought it had a good chance of breaking my cycle. So I have started gathering all my medical records for the guy which I should have copies anyway but don't and have emailed him saying I want to move forward with this. Now this is not as bad a treatment as I first thought and he said I can even drive myself home after so none of the loss memory or anything like that, just hope it works. I talked to my girlfriend last night about it and shared my apprehension about it and I guess I am just worried about how I will feel or react if this does not work, it is kind of the last thing and I don't have any other things no matter how crazy to try to make this go away. This could cost me $2,500 and not even help but more than the money it is the mental toll it will take that scares me if it does not work. I may not do it for a week or two since it will take five days to get my records and he wanted them first but it would be nice if it worked and I would have something so huge to be thankful for on Thanksgiving.

Wish me luck, I am fearful but hopeful at the same time.


11/12/2010 04:47 PM
Enbee
EnbeePosts: 1556
Senior Member

It does sound like a scary treatment to undertake. However, sometimes it's something that is outside the box that actually works. If you can drive yourself home afterwards that sounds like it isn't too dramatic Smile Undertaking an expensive treatment is always worrying because there is always the chance it will do nothing. You just need to decide whether you can afford it and whether it's worth the chance! Keep us updated on how you go.
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