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Kate in Oz
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curious - no hits but still getting the twinge
« on: Oct 3rd, 2005, 8:11am »
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Hello  Smiley
 
I hope someone out there might be able to help me.  I've not had a hit for weeks which is fantastic - my shortest cycle in years - and thanks to all you folks the less stressful in years.  It really made such a difference being here.  Ta.    
 
After the hits stopped I was getting shadows - like really bad and decided to stop my meds - I was taking low dose of verapamil (240mg).  I tapered off really quickly - about 4-5 days and the shadows stopped which was blessed relief.
 
However I'm still getting the twinge in the temple (you know the one?) normally for me that means I've got about 5 mins till I'm scrambling around in pain.  It just seems so strange to be getting that now??  Do you think its cos I went off the drugs too quick?  
 
I'm don't mean to whinge - I'm not getting hit - and I really do feel for those of you who are in a cycle or chronic - sorry I don't mean to rub it in at all.... just cycle seems so different this year with the constant shadows and now this.
 
Any thoughts would be appreciated.
 
Thanks,
 
Kate
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Re: curious - no hits but still getting the twinge
« Reply #1 on: Oct 3rd, 2005, 8:19am »
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Ah yes...the twinge...I know it well. It's hard to say what it's about, exactly. I've had it while on kudzu and while getting PF from clusterbusters. I can say that it doesn't always lead to full blown attacks. Some episodics get it now and then between cycles. I'd say if you're not hurting, don't worry about it. JMHO
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Kate in Oz
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Re: curious - no hits but still getting the twinge
« Reply #2 on: Oct 3rd, 2005, 8:30am »
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Thanks Nani,
 
You're right - if I'm not getting hit I shouldn't worry.   Just seems so strange and different to previous cycles?  Normally they come, they hit hard and they go in about 8 weeks and that's it for 18 months.   I guess I just never knew til I got here that you can go chronic. OH MY GOD!
 
I'll live Tongue   Sorry - I feel a bit rotten asking and taking up space when I know there are those of you out there who are really doing it hard.  
 
Wishing you all PFDAN,  
 
 
Kate
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Re: curious - no hits but still getting the twinge
« Reply #3 on: Oct 3rd, 2005, 8:32am »
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Never, ever...
feel bad about asking questions OR getting a break. OK?
hugs, nani
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Re: curious - no hits but still getting the twinge
« Reply #4 on: Oct 3rd, 2005, 8:44am »
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Whey my last cycle was winding down, I had the twinge and minor shadows for about 2 weeks after my last hit. In fact, during a 6 week stretch, I had nothing but shadows and twinges, with only one hit in that period.
 
I don't think the beast decides to leave the building all at once. I think the m-f'r decides to sit down at the party, he thinks about dancing with you, but doesn't. Eventually he leaves, but while he's sitting there, he reminds you that maybe he has another dance in him.
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Re: curious - no hits but still getting the twinge
« Reply #5 on: Oct 3rd, 2005, 4:22pm »
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Hi Kate,
 
I'm chronic and even when I have found a med that works (at present it is Depakote) and I'm not having full blown attacks, I still have a constant pressure behind my right eye.  Not pain just irritating.  I'm willing to live with it and enjoy the relief while it lasts.
Hope you are doing better and the twinges abate.
Kim
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Re: curious - no hits but still getting the twinge
« Reply #6 on: Oct 3rd, 2005, 8:22pm »
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Hi Kate,
 
I'm episodic - usually 3-4 years between cycles.  I totally weaned off all meds about 6 months ago.  Still get those twinges on occasion.  Each time, I worry my next cycle is coming much sooner than expected, but the twinges rarely last longer than a day. Each time I get them, I'm tempted to reach for the Verapamil.  Then I realize .... what good is Verapamil going to do me in one or two doses?
 
I think what you're experiencing is pretty normal.
 
Hugs,
 
Kris
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Kate in Oz
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Re: curious - no hits but still getting the twinge
« Reply #7 on: Oct 3rd, 2005, 10:16pm »
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Thank you so much  Smiley
 
It is so good to be able to get on here and ask a question rather than go see a doctor - what do they know ??!!
 
Sending out PF vibes to you all,
 
Kate
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Re: curious - no hits but still getting the twinge
« Reply #8 on: Oct 4th, 2005, 10:13pm »
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on Oct 3rd, 2005, 4:22pm, kimmeesue wrote:
Hi Kate,
 
I'm chronic and even when I have found a med that works (at present it is Depakote) and I'm not having full blown attacks, I still have a constant pressure behind my right eye.  Not pain just irritating.  I'm willing to live with it and enjoy the relief while it lasts.
Hope you are doing better and the twinges abate.
Kim

 
 
ditto
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Re: curious - no hits but still getting the twinge
« Reply #9 on: Oct 6th, 2005, 7:59am »
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Last year, as I was gearing up for a cycle, I got twinges. The night before last, I had one that woke me up and felt like it was going to turn into a full-blown hit. My guess is that it's the trigeminal nerve just wriggling around... Just like any other nerve or muscle that you've put your attention on: There is a neural pathway that has been established, so every once in awhile, it's going to say, "Here I am!!" I suspect it doesn't mean anything, in the long run, and I'm crossing my fingers for you, too! (If you like, I'll sacrifice a chicken, this evening...)  Grin hug
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Re: curious - no hits but still getting the twinge
« Reply #10 on: Oct 6th, 2005, 8:37am »
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I did not take any meds this cycle but I have before.
I have had clusters 25 years now. I was chronic the first 21 years the last four I been eposidioc. I have noticed something even when I was chronic. Cause Chronic have cycles also. That when my cycles ended. They all end the same way. It seems I have like a week of pure hell. Clusters back to back, and the pain seems to be the worst of the whole cycle. Then I have what I call the explosion, Its the worst cluster of all I mean 10 on the kip chart and nothing takesthe pain down and it last  and last a good 2 hours and that seems like 10 hours.
Then after that I have shadows, then nothing. Maybe its the beast way of saying I going to beat you up big time before I leave and he does then he hangs around just enough you don't forget. Then he is gone, only to return when you  least expect it! It didn't seem to matter if I was on meds or not.  
Maybe your the same way maybe the shadows are the beast way of leaving !
 
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Kate in Oz
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Re: curious - no hits but still getting the twinge
« Reply #11 on: Oct 6th, 2005, 7:41pm »
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on Oct 6th, 2005, 8:37am, LadyElaine wrote:
It seems I have like a week of pure hell. Clusters back to back, and the pain seems to be the worst of the whole cycle. Then I have what I call the explosion, Its the worst cluster of all I mean 10 on the kip chart and nothing takesthe pain down and it last  and last a good 2 hours and that seems like 10 hours.

 
Seems that is what has happened here.  My last hit was a ripper, definately up there on Kip's scale - I ended up in ER.  The next day I organised the 02 - too late! cos that was the last.  However next year - thanks to you all - I will be well prepared.
 
The twinge's aren't so bad now - kind of puts you on the back foot when they happen - so I'm feeling good and quietly confident that they've gone.  March is my next cycle time - if it's gonna happen - so I should be pf from the ch's til then.  
 
Thanks again for your help, support and advice.
 
Frank I think the chicken should live!!    
 
I'm one of those terrible animal rights types  Roll Eyes  and well..... you do what you've gotta do but leave me out of it!!!  Tongue  Hope you get another pf night tonight.
 
Kate
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Re: curious - no hits but still getting the twinge
« Reply #12 on: Oct 7th, 2005, 11:50am »
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Thanks, Kate. The chicken was tasty. LOL
 
Glad to hear that you're pain-free. My own cycle is due to start towards the end of February. These little twinges that we get, especially when OUT of cycle, are a little alarming, aren't they?  Undecided
 
-Frank
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Re: curious - no hits but still getting the twinge
« Reply #13 on: Oct 8th, 2005, 7:23am »
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on Oct 7th, 2005, 11:50am, Jeepgun wrote:
Thanks, Kate. The chicken was tasty. LOL
 
......   These little twinges that we get, especially when OUT of cycle, are a little alarming, aren't they?  Undecided
 
-Frank

 
 Roll Eyes I'm sure it was totally humane  Undecided  don't tell me otherwise  Tongue
 
I like to think of myself as a pretty independant person, got my life under control and do alright.  I'm happy, mostly optomistic and will laugh at most things.  Not scared of much really - don't let things get to me..... but this guy    Oh my -  a little twinge and i'm ducking and dreading.....
 
PFDAN hey !!! enjoy them while they last !!   Smiley
 
Kate
 
 
Edited - cos i'm a twit  Wink
« Last Edit: Oct 8th, 2005, 7:27am by Kate in Oz » IP Logged
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