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New guy on the block (Read 866 times)
jim murphy
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New guy on the block
Jul 29th, 2009 at 7:50pm
 
Just wanted to introduce myself as I just signed on this evening. I'm 58 years old and have had clusters since the age of 16. Much to my shock and dismay this latest episode started about 3 weeks ago after an absence of 10 years. Just when you think you've got it made eh!
I was really pleased to find out that the specialist I went to for about 6 years has since retired so I visited a new guy today who assures me that he has dealt with all kinds of CH patients over the years. He then proceeded to write me a scrip for Lithium (a good thing, it always reduced what I prefer to call after shocks in the past) and gave me two sample packs of Relpax 40mg to try in place of Ergomar which he doesn't like even though it worked pretty well for me in the past. In view of the fact that the sample packs contain a total of 4 tablets I asked him what I was supposed to take tomorrow. I've got some work to do with this guy I'm thinking. I'll report on how they work out after I test drive them which should be shortly.
I should add that my CH's are episodic and last 4 to 6 weeks with an average of two 5 or 6 Kips a day after the lithium kicks in.
Has anyone out there used Relpax and was it helpful?
Thanks
Jim
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Val_
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Re: New guy on the block
Reply #1 - Jul 29th, 2009 at 11:35pm
 
Hi Jim - & Welcome!!!   Smiley

Wow - what a Super thing, having a remission for 10 years!  sorry the beast is back for a visit, but glad you made it here!!  I think you will find a wealth of collective knowledge here (one that still surprises me even...)

Glad Lithium works for you as a prevent!  As far as trying different abortives, I have two things to say:

1) Read Everything there is to read about Oxygen to the left - it is the preferred abortive here (with NO Side Effects, and can be used as many times as you get hit per day!!).  Some docs are reluctant to prescribe because they have never done so before, so it doesn't hurt to print out the info to give to your doc - I had to do so, and my doc copied the prescrip word for word.  BUT It Works!!!

2) The triptan Relpax ( a pill only, if I am not mistaken) is a slow-acting abortive for CH.  It worked decent on migraine when I tried it before CH, but I haven't tried it for CH.  It took a while to kick in.  NOTE - you Should Not use more than two in a day - they don't give out very many - in sample or prescription.  Can cause heart issues and rebound headaches as well with overuse.  There are other triptans that work better/ Faster - which with CH is key.  I use Imitrex Injectable IF my Oxygen is not anywhere around me (on airplane, etc.)  There is also Imitrex Nasal Spray and Zomig nasal Spray.  There are others.  Try to avoid pill forms as they take too long to enter the body system and work - too long to abort!!  You want to be pain Free ASAP right?   Tongue

OK, that's my  Smiley

Feel free to ask more questions, and consider finding a headache specialist that might work with you on what you know works for you - the ergot... unless you're wanting to try new things.  The Oxygen is DEFINITELY worth trying!!!  Is a must in my opinion!!!

Val
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jim murphy
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Re: New guy on the block
Reply #2 - Jul 30th, 2009 at 9:15am
 
Thanks for the info Val. I've never tried oxygen but based on the testimonials I've read on the site I am going to give it a try. I'm in Toronto so I'm not sure that I need a scrip for it but I'll ask my druggist today.
I think the lithium is starting to kick in already. I have a buzzing in my ears that I always get when I first start it and I had a pretty good night last night. I actually got 2-3 hours straight sleep after a kip 3 session. It was mild enough that I didn't bother with the Relpax so I still don't know if it's effective. I'll report in after I've used it.
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Byrnie
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Re: New guy on the block
Reply #3 - Jul 30th, 2009 at 6:46pm
 
Wow 10 years PF, great for you!!!!! I thought 5 year remision was great, but I'm were back. I tried Relpax but found it only helped if I took it at the first sign of a shadow. Imitrex injections has always been my choice but seems to increase the number of atacks per night (and often day) I have about determined that regardless of what we throw at it ultimately the BEAST will not be denied. Here's hoping for PF periods for all as we are all in this thing together.
Byrnie Taylor
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jim murphy
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Re: New guy on the block
Reply #4 - Jul 30th, 2009 at 8:04pm
 
Byrnie;
Thanks for the reply. I asked my new Dr. about Imitrex but he , for whatever reason, doesn't like it. It was just becoming popular here when I had my last session 10 years ago. I actually had a prescription from my then Dr. but I never filled it because the CH's stopped before I had a chance to got it filled. I disposed of it a long time ago of course. The Dr. who proscribed it had high hopes for it at the time. Like I said, I'm going to have to educate the new guy.
I still haven't tried the Relpax yet because there has been no need yet. I've had a couple of 2 and 3 Kips since I got it but nothing that required anything more than a good rocking session in a straight backed chair. That's really unusual for me. Back in the good old days when I was having my regular cycles ( every 12 months, 6 to 8 weeks duration) I was good for a minimum of two 7-9 Kips a day. I'm starting to wonder if this session is coming to an end after only 3 weeks and is only an aberration. Gee I hope not!
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red ryder
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Re: New guy on the block
Reply #5 - Aug 11th, 2009 at 11:51am
 
Hey Jim, Jay here (red ryder).  How awesome 10 years free. The occasional twinge just gets me thinking here we go again even when I'm not in cycle. Glad its been a week cycle for you so far. Was wondering how long has this cycle been going for you. I am like you I am 7 weeks in to this one and I have seen nothing over kip 4 but sure is usualy over by now. I guess I'll take the good with the bad. I am kind of scared to try and use the migranol spray to bring it to a halt in fear I'll piss the beast off. Yes I always get the tender scalp thing on my right side. I always feel like I need to "pop" my neck due to the pain I get around the right side of my neck. No droopy eyelid this time just the stuffy nose , and the scalp and neck pain. I guess the majority rule is these things always change. I hate to hear the beast is back sounds like its going to be a dull ride hopefully. I am definately going to look into the high flow rate O2  regardless if this thing ends soon. The 8 lpm straight from the tube helps but it sounds like I need to be pumping about 15-25 with non-rebreather if this beast morphs. Any shadows durring the 10 year break? Take care,  Jay
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jim murphy
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Re: New guy on the block
Reply #6 - Aug 12th, 2009 at 8:44am
 
I'm into week 6 this session. Based on past performances the headaches should start winding down in the next week or so. 6 to 8 weeks has been the norm in the past. During the 10 year hiatus I never so much as had a twitch. It was like I had never had a CH before.
As to why they returned; your guess is as good as mine. They do keep yoy guessing.
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