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aloneuk
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changed sides
« on: Jan 6th, 2007, 8:21am » |
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hi all
ive just got into month 7 of my cycle, longest one ever 
but it seemed to be slowing down over the last week or so and thought it might be coming to an end, im only getting a k6 or so every other day, BUT last nite i had a k7 really hammered into the red bull ice and o2 and it lasted about 20mins 'thank god' so got myself back into bed and after falling asleep for what felt like only 2mins i woke feeling it starting to rage up again BUT on my left side!
red bull did nothing and nor did a ice, my eye swole up worse than my right eye ever has to the point where i could'nt see and i had a 'lightshow' not sure how to explain it but it was like little white lights flashing and spinning around. since birth ive been blind in my right eye so not sure if the light show was new or not as never seen it before, the devil thought he would bang around enough to make it a kip9 for just over 2hrs, leaving me feeling pretty bad today and i didnt get any sleep being so scared it would come back again.
is it common for it to swap sides ? ive not heard anyone else talk about it before?! i was starting to feel better the last week thinking it was the end of it all, but could it now be that its starting another cycle on the other side??
advise greatly needed
ike
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E-Double
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Re: changed sides
« Reply #1 on: Jan 6th, 2007, 8:52am » |
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It doesn't appear to be common however a decent enough sample "here" suggests that it may be more so then documented.
I get the occasional ping pong.......it's a bitch
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5yearsteve
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Re: changed sides
« Reply #2 on: Jan 6th, 2007, 4:21pm » |
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During my last cycle, (2001) the beast changed sides quite often. I'm usually a lefty, but the right side hurt just as much as the left (K8). This cycle i'm going through now is a piece of cake compared to last time. Now it is always on the left and HA's are much weaker (4 or 5). They are starting to get unpredictable so I hope the end is near (hopefully for another 5 years).
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| « Last Edit: Jan 6th, 2007, 4:24pm by 5yearsteve » |
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cootie
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Re: changed sides
« Reply #3 on: Jan 6th, 2007, 11:59pm » |
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Hi kiddo......Brad's never switched sides but have heard of it before on here.....and have read info about the 'flashing lights' stuff (don't quote me) and it called 'auras' or sumthin (spelling)....and it haveing a name and relation to it all ? Am sure sumone will read this and 'fill ya in' better then I am doin.........stupid by dumbness Pam
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BlueMeanie
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Re: changed sides
« Reply #4 on: Jan 7th, 2007, 12:12am » |
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Many people have reported the Beast swithing sides during their cycles. I have never had it switch during a cycle, but have had a few complete cycles on the OTHER side. (normally right).
Vibes to you. Hope it's just ending.
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Sandy_C
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Re: changed sides
« Reply #5 on: Jan 7th, 2007, 12:21pm » |
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I'm typically a rightie. Last cycle went through as usual, on the right. It ended and was PF for almost 30 days, then it began again for another month on the left side? That 30 day period wasn't half as bad as a typical cycle, shorter and milder hits.
I don't think switching sides is "common", but it's not unheard of, either.
Sandy
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aloneuk
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Re: changed sides
« Reply #6 on: Jan 8th, 2007, 8:24am » |
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thanx 4 the replys everyone im glad its not heard of and ill look in to aura's, just staring in verapimil so hope that will help a little. it seems to have been a 1off as ive had a few more k6-7 but back on the right side, but seem to be back to 2 a day again just when you think your getting somewhere !!!
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birdman
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Re: changed sides
« Reply #7 on: Jan 8th, 2007, 12:42pm » |
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I have definetly had CH's and both sides, never in same cycle. Right side mostly, twice on the left side in 22 years. Thankfully the two times it switched sides it was the shortest cycles I have ever experienced. Keep fighting!
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aloneuk
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Re: changed sides
« Reply #8 on: Jan 9th, 2007, 1:32pm » |
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hiya all
today i really feel im losing my mind had no sleep last night, 4 hits so far 2day last 1 was an k8 and its knocked me for 6, cant think and i keep dropping things finding myself getting confused by everything cant keep up with conversations tv seems to be confusing the hell out of me, ive not had this before any ideas? just lack of sleep and pain ?
but ch is still back on the right side so thats a small comfort !
thanx for the advise glad its not to uncommon,
wishing u all pfdans
ike
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Shedz
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Re: changed sides
« Reply #9 on: Jan 9th, 2007, 1:47pm » |
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Sounds as if your just plain worn out from the repetative hits and lack of sleep mate, I know thats probably not of much comfort to ya but hang on in there, hope you get some PF time soon and a chance to rest.
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roy21302
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Re: changed sides
« Reply #10 on: Jan 9th, 2007, 2:41pm » |
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Hullo,
Sorry to hear that you having a bad time of it at the moment, don't worry too much about it switching sides, whilst it does not happen to everyone, it does occur. It has happened to me several time over the years, usually it hit one side for a while then thing calm down for a while and the next time it flairs up it appears on the other side.
The fact you are having trouble concentrating and holding conversations is probably due to lack of sleep. I think you mentioned difficulty with the TV, it might be an idea to avoid it if you getting hit bad, some people find it stirs their CH up, same as some find Computer screens do.
Hope you get some PF time soon, if you have any more question ask away some one will answer you
Cheers Roy 
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aloneuk
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Re: changed sides
« Reply #11 on: Jan 11th, 2007, 9:50am » |
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thanx for the replys, to be honest im worse rather than better, got about 3hrs sleep last night, and seem to be getting hit after hit, it was my lil girls 6th birthday yesterday and while she was happily opening pressies i sat out side in the shed crying and begging for something to help, it broke my heart missing most of her day because i have to hide from her theres no way she can see me like that, im trying everything i can but nothing seems to help red bull, ns, o2 no real joy from any of them, been to doc and she just said 'i really dont know how to help' she just sat there with her head in her hands and says your the only person ive known with ch and im not sure what more to do, so she offerd my meptazinal and upped the verap, meptazinal dont do shit apart from make me feel odd, my neuro app is the 19th so praying he can help, but what am i meant to do right now? im sorry im ranting on but ive nowhere else to turn.
is there anything more i can try ? i really just dont know what to do and where to turn im just SO TIRED, help !!
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cootie
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Re: changed sides
« Reply #12 on: Jan 11th, 2007, 12:50pm » |
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Sorry your goin thru all this........and sorry if I missed sumthin but have you tried the trex shots ? Then there's the tip on here how to stretch a shot also.......I didn't notice you mentiond trex 'or forgot' if you had ? Course rumor has it the more of it you use the more hits you get too. Dam'd if ya do Pam
Hope ya get sum sort of releif !!!!!!!! Sorry ya had to miss most of the daughters birthday party......that was sad !!!!
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birdman
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Re: changed sides
« Reply #13 on: Jan 11th, 2007, 2:52pm » |
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I would definetely give the trex injections a try. Always broke mine within 5 minutes. While it may bring about more ha's or rebound ha's, some relief is better then none. At least till you get to your neuro. Best wishes, keep fighting, your not alone in the UK or anywhere else. You have us!
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freddefeo
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Re: changed sides
« Reply #14 on: Jan 12th, 2007, 4:02am » |
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i don't know if this helps any - last year i had an episode where right side of my face went had bad headache,but after that stopped - happened while in the local mall shopping, about 15 mins - for the next 3 weeks a had clusters on my left side- as i did the year before - both episodes happened almost the same time 0ct-nov. this year they just started - more severe than normal and on the right side. the dr thinks i'm nuts.
i wish you the best of luck,i'm just trying to cope the best i can because no meds help.
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this is new to me - but i didn't know where else to turn to. any help i will teasure!!!!
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pubgirl
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Re: changed sides
« Reply #15 on: Jan 12th, 2007, 4:12am » |
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Ike
As I posted on your other thread, you aren't alone at all. There are many, many hundreds of us at OUCH UK and we have a Helpline you can call which will save hundreds of questions and complicated answers on here as you can do them all on the 'phone with a knowledgeable,trained sufferer.
Telephone number is: 01646 651 979. Leave a message there and someone will call you back.
Just an example of how we can help (there are loads more):
Your GP is prescribing the wrong thing with meptazinol, it is probably no use whatever with CH as it is an opiate painkiller which helps almost no-one. Just get your GP to look CH up in their BNF (the prescribing Bible they all have) and she/he will see that the two licensed abortives are Imigran injections and high flow rate 02 only)
Your 02 set-up may be wrong- we can help you get that right as it is the most common reason why some sufferers say 02 doesn't work.
Verapamil can be quite complicated to dose correctly and won't work if it is given wrongly (Have you had an ECG by the way?)
A short tapered burst of steroids may be a better option than the Verap if you are well into your cycle as Verap increases can take a while to work.
etc etc etc etc
You aren't alone at all
Wendy
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| « Last Edit: Jan 12th, 2007, 4:17am by pubgirl » |
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freddefeo
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Re: changed sides
« Reply #16 on: Jan 12th, 2007, 4:58am » |
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thank you for the contact #
i will give it a try
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this is new to me - but i didn't know where else to turn to. any help i will teasure!!!!
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pubgirl
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Re: changed sides
« Reply #17 on: Jan 12th, 2007, 5:02am » |
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Sorry freddiefeo, that number was intended for Ike/aloneUK as it is hard for us to deal with people on the OUCH UK Helpline who are not part of the UK Health system.
Also we can't afford to run the Helpline (it is funded by charitable donations and membership fees) if we have to call back International numbers every day.
If you reall have no other option we would not turn away someone from the USA or elsewhere in the world but you would probably be better talking to someone who knows your Health systems and drug names
Wendy
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| « Last Edit: Jan 12th, 2007, 5:03am by pubgirl » |
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freddefeo
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Re: changed sides
« Reply #18 on: Jan 12th, 2007, 5:09am » |
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i'm going over to the ouch website right now
hopefully they are as responsive as you have been.
thanks
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this is new to me - but i didn't know where else to turn to. any help i will teasure!!!!
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pubgirl
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Re: changed sides
« Reply #19 on: Jan 12th, 2007, 5:13am » |
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You'll probably get me there too I'm afraid so it may be easier to post any questions here! 
The link to the Main Site menu has lots of good info in an easy to read format, including a really straightforward article about CH written by Professor Goadsby which many people here print out for their GP's. It isn't a new article but it really is a good start point for your CH reading
http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498& ;Section=Feature
Wendy
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| « Last Edit: Jan 12th, 2007, 5:19am by pubgirl » |
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aloneuk
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Re: changed sides
« Reply #20 on: Jan 15th, 2007, 7:45am » |
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thanx everyone for the replys/advise sorry its taken so long to get back to you all,
over the last couple of days ive been a little better i was given some steriods and they gave me 2days pf 
but then the devil came back last night and was very angry ! he thought he would give me a k8 and then when it went i had about 45mins and then another k8,
i cant use imigran injections because they make me swell up last time i went into anaphylactic shock, im waiting for my doc to give me another kind on injection 'olanzapine' wendy thanx for the contact ill give them a call, thanx again everyone
an end will come !!!
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pubgirl
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Re: changed sides
« Reply #21 on: Jan 15th, 2007, 8:21am » |
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on Jan 15th, 2007, 7:45am, aloneuk wrote:thanx everyone for the replys/advise sorry its taken so long to get back to you all,
over the last couple of days ive been a little better i was given some steriods and they gave me 2days pf
but then the devil came back last night and was very angry ! he thought he would give me a k8 and then when it went i had about 45mins and then another k8,
i cant use imigran injections because they make me swell up last time i went into anaphylactic shock, im waiting for my doc to give me another kind on injection 'olanzapine' wendy thanx for the contact ill give them a call, thanx again everyone
an end will come !!! |
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Hey! You have nothing to apologise for.
Things sound slightly better but I really think we need to get you kitted out with a really good 02 set-up for aborting attacks rapidly.
Promise we can and will help you do that and it may be the best thing you ever did, it is for most of us
Also, make sure the steroids are tapered off soon. It is only a short term "blast", not a long term solution.
Most GP's know this but some don't!
Hope to talk to you "over the pond" soon.
Wendy
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on Jan 15th, 2007, 7:45am, aloneuk wrote:| , im waiting for my doc to give me another kind on injection 'olanzapine' |
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I've never heard of anyone getting an injection of Olanzapine (or Zyprexa). I thought it was only available in pill form.
UNsolved (learnin somethin new everyday)
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pubgirl
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Re: changed sides
« Reply #23 on: Jan 15th, 2007, 6:48pm » |
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Unsolved
I think aloneUk may be confused or have misread things on here as I am pretty certain Olanzapine is only available here in pill form here and is really only prescribed for mental health conditions or people whose headaches are combined with depression or mania. It is pretty much unknown here for CH, even by people who know about the condition. It isn't even licensed as a treatment for headaches here so I would expect aloneUK won't be given it.
Can't see any reason why it would be needed in such a fast delivery form either unless it were used in emergency psychiatric care??
W
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dreamrider
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Re: changed sides
« Reply #24 on: Jan 16th, 2007, 11:34am » |
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I had the side-switching in mid-cycle once about 5-6? years ago? In fact, I think that I posted here the event, as I was totally confused by that first ever instance. I thought it was the weirdest thing. The type of pain is soooo different from side to side. Also, just as unbearable. Insterstingly enough, my cycles alternate sides, meaning one side one cycle, the other side for the next cycle, back on the next... I was not aware the people had them predominantly on one side only.
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