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RichardN
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Re: New to the board
« Reply #25 on: Dec 29th, 2007, 4:43am » |
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Great posts Becky . . . and all above!
And Klong . . . get yourself a lottery ticket tomorrow. I don't think I recall anyone coming here so quickly after onset of CH and being able to see a doc AND neuro and get effective meds as quickly as you have.
If the pred taper and topomax don't completely stop your attacks, DO ask your neuro for the 02 script . . . . from your posts, sounds to me like he will be receptive.
And by now you see why we refer to this place as "home" and "family".
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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klong
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Re: New to the board
« Reply #26 on: Dec 30th, 2007, 1:36am » |
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I tell you what I'm reading tonight some of the posts and am thinking of RichardN's last post for me. If it weren't for everyone one of you who have suffered for so many years and always knew there was more to your condition, then I would have never been able to find all of you so fast. HATS OFF TO YOU!!!!
For the first 2 or 3 days that these headaches came on every night at the same time, I thought I was going crazy. It was all I could do to think of what in the HELL could I have done to eat, drink, smell, stress over, etc to cause something like this. But I knew by the 2nd or third night that having a headache this severe every night at just about the same time, wasn't normal. So I went to my ENT doc. I had been to him before for sinus headaches. Anyway.....I'm not going into how I found you guys again. I am definately not one to chat on message boards, but after work I get on here and READ. And it is VERY reassuring to have all of the experience and stories of everyone so you don't feel all alone.
Anywho, since on the meds Wednesday, I did have my first PFN on Thursday night. But last night(or this morning, Sat) I awoke at 6:45am instead of the usual 1:30am or 2am with a K4 or 5. Couldn't get back to sleep but felt it wasn't coming on as strong as normal. Gushed a Red Bull and took 2 hits of Imitrex. It took the edge off and within an hour I was back in bed. I can't just go right back to bed after feeling things taper off. I felt out of it all day at work. The occasional sharp stab behind my right eye, dull stabbing, but I could live with it at work, just felt out of it, in a daze, and everyone could tell.
Good thing about all of this, I haven't had a K9 or 10 since 25th.
What concerned me is that this was the first time I awoke in the middle of my sleep off of my "normal" schedule with the onset of on of these things? Why? I'm just scared this is something new. I was for sure that I had licked it in the first round. I know this can be trial and error just by reading everyones posts but I was just wondering if anyone had any thoughts?
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Klong
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klong
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Re: New to the board
« Reply #27 on: Jan 3rd, 2008, 8:55am » |
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Had my MRI yesterday morn. and went to see the Optomotrist to check my eyes. He said everything was good with my eyes that he wanted to look at the MRI as well in a couple of days and follow up with him in 2 weeks.
My concern is this weird sensation that I am continuing to have behind my right eye, where all this started from. My right eye continues to have that "heavy" feeling even though I have not experienced any headaches since being on the Verapamil, Topamax and Prednisone. The dull pain increases occasionally and seems to be more appearant throughout the day. Definately not bothering me through my sleep anymore.
Any opinions?
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Klong
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rocketman3104
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Re: New to the board
« Reply #28 on: Jan 3rd, 2008, 9:14am » |
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It may be the monster trying to break through, but your meds aren't letting it. I just use o2 and triptans, but I get that feeling you describe behind my eye most of the time I'm in a cycle.
It may just be the meds though. I can feel a twinge of pain when I look left of right rapidly. May just be the trimengial nerve is a litte aggravated. Thats the nerve that causes us most of this aggravation (hell)!
Just my thought.
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Paul
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klong
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Re: New to the board
« Reply #29 on: Jan 3rd, 2008, 9:22am » |
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Is there any hope for this trimengial nerve? It feels like such a strain on my eye?  Sometimes when I am listening to someone or in deep talk with someone it'll get stressed on and I'll loose my train of thought and touch my temple. That person asks me if I am OK. I noticed this yesterday at work.
This is so aggravating.
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Klong
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rocketman3104
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Re: New to the board
« Reply #30 on: Jan 3rd, 2008, 9:38am » |
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I got use to it. Kind of scares me sometimes because I think I'm about to get hit.
Like I said mine is just a bit of shooting pain. If it is bothering you alot I would talk to your doctor.
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Paul
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klong
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Re: New to the board
« Reply #31 on: Jan 3rd, 2008, 9:44am » |
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Thanks for your experience.
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Klong
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DennisM1045
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Re: New to the board
« Reply #32 on: Jan 3rd, 2008, 9:47am » |
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I get it all the time too. Sometimes its quick jabs, other times its more of a long building and releasing of pressure over minutes. They last for and hour or so and then go away for a while.
It is distracting and frustrating but you get used to it.
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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rocketman3104
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Re: New to the board
« Reply #33 on: Jan 3rd, 2008, 10:03am » |
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Just my 2 cents.
Glad you found the board. If it weren't for this site, and everyone here, alot of us would still be trying to figure out what is wrong with us.
If you haven't tried oxygen yet, it works wonders for most of us. Hope your cycle ends soon!
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Paul
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rocketman3104
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Re: New to the board
« Reply #34 on: Jan 3rd, 2008, 10:07am » |
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Hey, by the way are you close to Ft. Benning? Love your state. I was stationed there back in the late 80's. God that makes me feel old. 
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Paul
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klong
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Re: New to the board
« Reply #35 on: Jan 3rd, 2008, 1:58pm » |
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Yep, close to Fort Benning. Close to Cussetta(if that's how you spell it). Not originally from here, but I like the small town.
Hey and you are so right about finding this place. It helps me get through all this worrying and not freaking out. Even though I still feel like I freak out, I atleast have somewhere to come and share and hear about other experiences.
I still have 3 more weeks to see the Neuro again, hopefully I can hold out that long. I don't see it, because just as soon as things get stressful I won't feel like I can deal with this "eye" problem.
Gotta get the kids........
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Klong
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klong
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Re: New to the board
« Reply #36 on: Jan 3rd, 2008, 2:04pm » |
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Hey Dennis, you are so right about the "distracting" part. I have the highest level position at my job, and my boss relies on me to help him, the company relies on me and my managers to train managers for the company, and I still have a store to run my own store, make my own sales, keep costs in line and keep employees happy. NOOOOO Pressure.
This whole new "thing" is VERY distracting.
I guess my next topic will be how everyone handles work and the "beast"?
How does everyone do it?
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Klong
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DennisM1045
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Re: New to the board
« Reply #37 on: Jan 3rd, 2008, 2:46pm » |
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on Jan 3rd, 2008, 2:04pm, klong wrote:This whole new "thing" is VERY distracting.
I guess my next topic will be how everyone handles work and the "beast"?
How does everyone do it? |
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This was one of my first questions when I came here too. It is hard at times but very doable depending on the severity of your CH, when it hits you and what you use to abort attacks.
I'm a software engineer by trade and have managed groups of developers in previous jobs. I'm episodic and typically run 2 cycles a year for 6-12 weeks. My last job was very high profile and my cycle did interfere. However I made sure everyone who would notice what was going on knew what I was dealing with. There is a good collegue letter for that purpose here:
http://www.ouch-us.org/chgeneral/colleagueletter.htm
I carry e-tanks into work and keep them down in HR. That way they're not taking up space in my office and are close enough for me to get to when I need them. They have gratiously made an office available for this purpose. When I get hit, I go deal with it and I'm typically back in my office in 25 minutes max.
I also keep a supply of energy drinks around and I carry Imitrex injections with me wherever I go.
Of course your productivity does suffer when you are in cycle. The trick I found is to make sure that people see your producitivity resume to its normal level once the cycle is over.
Of course there is always business travel or a day long presentation where you just can't afford get hit. If your Dr feels triptans are appropriate for your treatment, look into Frovatriptan. This is a long lasting triptan that can buy you 12 hours of PF time. You take it 3 hours before you would expect to get hit and it'll keep the beast at bay for the rest of the day. It's not for long term use yet as studies haven't been conducted to determine the long term effects.
I hope this helps...
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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rocketman3104
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Re: New to the board
« Reply #38 on: Jan 3rd, 2008, 3:21pm » |
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Dennis is right, it is very doable. Just can't let it win. My e-tank and imitrex goes where I do.
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Paul
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klong
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Re: New to the board
« Reply #39 on: Jan 3rd, 2008, 8:11pm » |
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Again, I appreciate all the info on your experiences. It sure helps.
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Klong
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rocketman3104
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Re: New to the board
« Reply #40 on: Jan 3rd, 2008, 8:53pm » |
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No problem, just take everthing one day at a time. You'll have little hiccups, from the h/a and the meds, just keep working through them. You can't let them stop you.
You'll find out what works best for you and you'll learn to how to deal with other stuff. Just give it time. We'll help you through it. Having a good support base is a great thing. Don't forget to try the oxygen as soon as you can.
Hope you have a good night
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Paul
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