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Kate in Oz
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Just a whinge
« on: Mar 7th, 2006, 6:32am » |
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Hi all, forgive me I need to whinge.....
I've been absent recently - not even lurking - cos my hard drive died... right in the middle of writing an essay - of course 
Anyway that's not my whinge it's these damn shadows !!! been nearly 4 weeks now. I know my cycle is coming cos I'm a March & Sept girl.... and I started the verapamil a few weeks ago (mid Feb) and it's like...well I just want the beast to ramp up and get on with it! Which seems mad I know and when it happens I'll be sorry I thought it but.... this constant shadowing spose Kip3-4 light sensitivity and aching arm are starting to wear me down already. Spose it's kind of fear of the inevitable ... just want to get it over and done with. Even had a few wines last night - a very rare occassion - in the hope it my bring it on 
I'm just posting this cos I want to whinge and no one else really understands and well I know those of you who are being hit hard right now would do anything for a shadow rather than a hit - so please forgive me 
Silly isn't it but I do feel better for just getting that out of my system.
Clusterville rocks 
Kate
edited - spelling
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| « Last Edit: Mar 7th, 2006, 6:33am by Kate in Oz » |
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chewy
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When I feel a cycle coming I to start the verapamil. I have also found that if the shadow period is prolonged, with no real cycle pain, a couple of 20 mg predisone a day for a couple of days have knocked the cycle and the shadows out.
This worked a couple of times for me.
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AussieBrian
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Re: Just a whinge
« Reply #2 on: Mar 7th, 2006, 7:52pm » |
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Always worries me when you're quiet, looks like I was right. Sorry about the essay. Anything I can do to help?
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Kris_in_SJ
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Re: Just a whinge
« Reply #3 on: Mar 7th, 2006, 8:06pm » |
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Kate -
Maybe starting the Verapamil early is keeping the worst of the beast at bay. In other words, perhaps you won't have a really bad cycle with multiple attacks.
I agree, those damned shadows are really hard to deal with. In fact, my very first cycle (before I was diagnosed) was one constant 12 week shadow.
Stick with the Verapamil and, like chewy said, maybe have your doc try a Prednisone taper. With a little luck, you'll never have to pull out the oxygen or Imigran.
Many hugs,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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Kate in Oz
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Re: Just a whinge
« Reply #4 on: Mar 7th, 2006, 9:12pm » |
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Thanks for your replies.... its a bit sad but just knowing that someone else knows what I'm going through gives some relief.
Yes Chewy, I think another trip to the doctor is in order. And like you say Kris maybe it will just be a cycle of shadows ?? Just a shit that they tend to hang on most of the day - coffee, panadol don't even touch the sides.
Hi Brian  - you missed a doosy of an essay! Probably not a bad thing... Can we know the world? Was a bit deep. Thanks for your concern, aint nothing you can do other than just keep being you. Hope all's well in your world.
Kate
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Barry_T_Coles
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Re: Just a whinge
« Reply #5 on: Mar 7th, 2006, 9:36pm » |
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Hi Kate
Good to see you posting again, been a bit quiet myself lately being away from home on holidays and can’t always get to a putor.
Sad about your hard drive they tend to bomb out when you need them most.
Just a question about your shadows; do you loose them when out of cycle and have them only when coming back into cycle again.
The reason I ask this is that i’m trying to work out where i’m at, when my cycle finished in February 05 I thought that would be the end until the next 5 year hit but i've been pretty much constant shadows 24/7 with only the odd break for a day or 2 and the sore arm that comes and goes with the shadows.
I guess I know i'm sorta chronic but not getting the full blown hits; tricky little shit this CH eh.
Hope things look up.
Kind regards
Barry
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Kate in Oz
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Re: Just a whinge
« Reply #6 on: Mar 8th, 2006, 6:21pm » |
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Hey Barry,
Thankfully when I'm out of cycle the shadows go although I do tend to get a lot of tension headaches. But shadows are different - different flavor of pain.
I'm sorry to hear that your shadowing so much that must really suck. I hope you're not going chronic, the whole idea scares the begebers out of me. What do you take to keep it under control, if anything?
Curious when did you start getting CH?? Have you had it for years and years and just now going chronic?? I've had it for coming up 20 yrs now and wonder if its a given that over time it will mutate to chronic???
You take it easy too yes..
Kate
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Colorado_Loki
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Re: Just a whinge
« Reply #7 on: Mar 8th, 2006, 6:57pm » |
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After the Verapamil kicked in last time I stayed on it until my roommate screwed me over in Dec. The headaches didn't come back, so I stayed off of it. The end of Jan. They hit. I remember in Sep-oct ish The shadows, but at the time I didn't really know what was what. I guess the point I'm asking is once on it why go off?
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Jonny
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Re: Just a whinge
« Reply #8 on: Mar 8th, 2006, 7:11pm » |
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on Mar 8th, 2006, 6:57pm, Colorado_Loki wrote:| I guess the point I'm asking is once on it why go off? |
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If your chronic you dont stop taking it, if your episodic, why would you want to put meds in your body when you dont have to?
Keep reading the site.....it will inform you!
Hang in there, Kate.......Jonny's arm's do reach to OZ 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Jasmyn
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Re: Just a whinge
« Reply #9 on: Mar 9th, 2006, 1:19am » |
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Hi Kate. Yip, shadows can wear you thin. Combine that with the fear of a full blown attack and you'll rather wish for it to stop peaking over the wall and just come right in so you can blast it with your artillery.
Then, like you know, when you're actually face to face with the bugger, you wished you've rather clobbered him dead the moment you've seen him over that wall!
Good advise from the Chewy guy. It is worth a shot. 
Barry I hope you are not chronic, maybe get a pred taper too?
Sorry you guys are suffering 
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Jazz
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sandie99
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Re: Just a whinge
« Reply #10 on: Mar 9th, 2006, 3:00am » |
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Kate,
ranting, venting, whinging... all allowed in here. I'm sorry that you've got shadows... I'm not a fan of them myself.
I do hope that you won't be hit hard this time around, though. And I hope that it'll be over soon & you'll have lots of PF time.
Best wishes,
Sanna
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Kate in Oz
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Re: Just a whinge
« Reply #11 on: Mar 9th, 2006, 4:57am » |
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Thanks Jonny, Jasmine and Sanna
This really is a wonderful place. When I think of all the years I went through this alone
I really appreciate the support and DJ 
PFDAN to all,
Kate
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LeLimey
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Re: Just a whinge
« Reply #12 on: Mar 9th, 2006, 5:00am » |
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Kate I know what you mean too.. its so annoying to be on tenterhooks with it all the time. Have you tried chugging some red bull or something like that to see if it helps? It sometimes will throw a big rock at a shadow for me
Hope you find something soon
love
Helen
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Barry_T_Coles
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Re: Just a whinge
« Reply #13 on: Mar 14th, 2006, 12:16am » |
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Hi Kate
Sorry for not getting back sooner, been on holidays for my daughters wedding in Perth.
Back home in Karratha now & nearly ready to go back to work.
To answer your question; I first got CH back in Oct/ Nov 1999 it stayed for the obligatory 8-10 weeks and went away, Doc & I both thought it was a virus as there was one going around that fitted the bill and after it was gone I was fine for the next 5 years until I got hit again, back to the same Doc but with different outcome, after about a fortnight of going through hell and a couple of trips to the ER after KIP 10’s ( I class a 10 as when my body cant take it any more and I pass out ) I made another appointment to see the Doc and while sitting in the waiting room I got hit with a KIP 8 that really freaked the staff out, it was then that the doc saw what was happening & immediately clicked to what was going on.
She had come across CH while researching migraine headaches as her partner & both of her children suffer badly from them.
I was referred to a Nuro and after all the mandatory tests to rule out any other condition it was confirmed that CH was the problem, this took nearly a year to get through this because of the distance I live from Perth and being able to get an appointment with a Nuro with knowledge of CH.
After I finished my cycle in Jan/Feb 05 I was hit with another little devil, Exploding head syndrome & Restless leg syndrome for which the Nuro prescribed a med called Endep which is a depression med that is used for controlling the serotonin levels.
This is where things start to get interesting: the Nuro explained that serotonin is required for the whole of the body to maintain muscle control as well as the brain requirements, the exploding head only occurred when I went to bed & it was explained that what was happening was that the brain was still sending out the message that the full dose of serotonin was required when in fact it wasn’t and the result was the violent explosions in the head and involuntary muscle movement in the legs, once the excess serotonin was used up, usually in a couple of hours everything would be back to normal.
I was to take the Endep for three months only and then go off it even if the syndromes hadn’t ceased, fortunately they had to a point that I was able to sleep 6 out of 7 nights a week but the one night that I do get hit with the Exploding head it leaves me badly bruised internally and that will last for days and this is where I am now wondering if that is what my problem is, the shadows as I feel they might be may only be this bruising and I guess only time will tell.
I am still getting light CH hits KIP 3-4 only after I have a beer ( so its off the beer & supping of fine Jacobs Creek Chard for now) and the o2 knocks out the hit within a minute, strange part is that wine, scotch & stout don’t effect me anywhere near like beer does
Something that I have also noticed is that if I can spend a day doing some physical work like digging in the garden or otherwise doing something manually demanding I don’t get hit with either the CH or the EHS so I’m thinking that if I can do some manual type work daily and use up the excess serotonin I may be able to reduce the incidence, so far this seems to be working and I do feel a hell of a lot better after a day doing something meaningful.
I don't take meds if I can get away without.
Sorry this is a bit long but I though I should explain all so as not to leave people wondering.
PFD’s to all
Kind Regards
Barry
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Worry is like a rocking chair it gives you something to do but gets you nowhere.
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