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        Cluster Headache Help and Support >> Cluster Headache Specific >> CH on BOTH sides??!!!!!
        
(Message started by: Kate in Oz on Jul 1^st, 2007, 8:03am)

Title: CH on BOTH sides??!!!!!
Post by Kate in Oz on Jul 1^st, 2007, 8:03am

Please indulge me whilst I vent...

Saturday morning 5.ooam, wrong time, wrong side! Normally if/when my headache switches sides I take it as a sign that the cycle is comming to an end. It was bloody painful tho', the 02 helped to stop it ramming up to a higher intensity of pain, but the damn thing lasted for an hour! And even tho its painful, when I cop one on the right side I know how to cope, lie, which parts of my head to press on etc etc but on the other side its so bloody awkward.

Anyway it finally ended, must have fallen asleep for all of 10-15 mins then BAM back again on the same (wrong) side, 02 only stopped it from amping up but it lingered on for a while.....

And then around 8.00am I copped the most painful headache I have ever had!! A kip 9 on both sides! :o Unbelievable. Has anybody ever had it behind both eyes? What's with that?? Honetly I thought I was dying. Luckily, my boyfriend was over and he looked after my son. The pain was absolutely unreal, I was crying like a baby!!! :'(

I'm hoping that's the end of it, and I never ever ever ever have to experience that level of pain ever again.

Would really appreciate it if anyone could let me know what the deal is with coping it on both sides - have you ever had that? I've had these for just gone 20 yrs and have had my share of kip 10's, didn't think the pain could get any worse, I was wrong.

Appreciate any responses you have,

Kate

Title: Re: CH on BOTH sides??!!!!!
Post by Guiseppi on Jul 1^st, 2007, 10:47am

No help here, almost 30 years and so far I've always been a right sider. Do you have any other abortive besides oxygen? I take an oral cafergot when a headache starts and then start the oxygen. It's been very effective in stopping the advance of a headache, and stopping that "lingering" headache pain. Hoping your cycle is coming to an end, sounds like you could really use a break.

Guiseppi

Title: Re: CH on BOTH sides??!!!!!
Post by Bob_Johnson on Jul 1^st, 2007, 11:05am

Both sides may not be common but CH has the ability to keep us from becoming too comfortable. <bg>

Agree that using only oxygen as an abortive is not the best approach. Though many folks find it helpful, it has real limitations and have an option on the shelf is a good idea.

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: CH on BOTH sides??!!!!!
Post by michael on Jul 1^st, 2007, 11:33am

I have had these things for 40 years and I am a right sider. However I have had occasional left sided cycles, and rarely left sided attacks in a right sided cycle. I have never experienced one on both sides at the same time, nor would I want too.

I have never heard of this before.

Hope it was just a freak and you are pain free soon.

Mike

Title: Re: CH on BOTH sides??!!!!!
Post by UN solved on Jul 1^st, 2007, 11:35am

18 years here and I had 1 double-sided attack around late 2000 or early 2001. A shot of Trex (6mg) worked in about 15 minutes. The attacks started coming on the other side after that and I bacame chronic :-/

Goodluck

UNsolved

Title: Re: CH on BOTH sides??!!!!!
Post by horsegirl on Jul 1^st, 2007, 2:22pm

the only time i have ever had it switch sides is when it was triggered by something they gave me from a colonastapy,anyway it only stayed on that side for a week then switched back to my normal left side,understand what you mean about not knowing how to lay,rub,etc.. but i have had shadows on both sides.i take verapamil as a preventer and it realy helps me.and when Im having a realy hard time steroids for a week.I prey your boyfriend is realy supportive,sounds like he is,

Title: Re: CH on BOTH sides??!!!!!
Post by MR_FLOOR on Jul 1^st, 2007, 10:34pm

on 07/01/07 at 14:22:39, horsegirl wrote:

i have had shadows on both sides

I also had shadows on both sides but never a full blown cluster.That would be a total slap in the face.I guess I will call that good luck.

Dave

Title: Re: CH on BOTH sides??!!!!!
Post by Kate in Oz on Jul 2^nd, 2007, 7:08am

Thank you all so much for your replies :)

Luckily the beast is being good at the moment - I do suspect that may have been the end of it - fingers crossed :P I tend to go out with a bang. Last cycle, last hit I ended up in the ER cos the pain was just absolutely unbearable. (And yes I do have the most supportive partner - he came to my rescue that time too - drove over in the middle of the night to look after my son).

I'm still shadowing a bit, but then I've been shadowing since the cycle started in May - I just hope that I manage to skip my regular July/August cycle cos this current one is my March/April cycle that I delayed by taking the verap early.

So yes, I have been taking verapimil but I suspect I missed a dose the day before, which would explain how it got through. I must say I've been so lucky tho', only copping hits every 3-4 days at the most.

Unsolved, man that's what I didn't want to hear!!!! The thought of ever going chronic scares the begeebers out of me. Since I found this site in 2005 it's made such a difference to the way I cope with my cycles, especially in terms of coping mentally. Just knowing that your not alone is relief in itself. But I must say I never knew that you could go chronic - seems so bloody unfair! I hope that you're not suffering too much!!!!

Thanks again everyone.

Wishin you all pf days & nights,

Kate

Just wanted to add - the worst thing about that double hit was that I couldn't move cos it made the pain even worse!!! Normally I rock back and forth with a hot water bottle on my head - but couldn't even do that - just had to lie there and wriggle my feet non stop. I'm glad my boyfriend was busy - cos it was just so pathetic! I was a mess!!!

Title: Re: CH on BOTH sides??!!!!!
Post by mynm156 on Jul 5^th, 2007, 3:11am

I get hit on eother side mainly my left but after going chronic a couple years ago it started hitting me on the other!
Good Vibes

MYNM156

Title: Re: CH on BOTH sides??!!!!!
Post by horsegirl on Jul 5^th, 2007, 9:48am

i know were all different but had to say,when i had not been diadnosed yet i thought they were sinus anyway tried hot steam and my ha soared to a kip 10.a year later my mother gave me a hot rag tried it took it off,so she brong me a realy realy cold rag first head so sensitive almost threw it but stuck it out then it numbed the pain aliittle,changed the feel of the pain,now i cant live with out my ice,i think it also helps with the swelling of vessels,i think a persons head so sensitive they dont give it a fair chance . i plan on making this a topic in hoping to help just on person. katie .happy to hear your good news!

Title: Re: CH on BOTH sides??!!!!!
Post by michael on Jul 5^th, 2007, 11:41am

Horsegirl, one of the worst things before a proper diagnosis is being diagnosed as sinusitis and told to use steam inhalation with menthol crystals. Boy does that send a CH through the roof. Been there.

Mike

Title: Re: CH on BOTH sides??!!!!!
Post by horsegirl on Jul 5^th, 2007, 11:52am

so true,it totaly surprises me that steam helps some people,were all the same but yet so different.i dignoised myself for the first few years,in my defense it seemed logical to me the way they came in the change of seasons,

Title: Re: CH on BOTH sides??!!!!!
Post by ClusterChuck on Jul 5^th, 2007, 11:24pm

Kate, I feel sorry for you. And I know what you experienced! I was always a lefty, for the first 25 years. Then I would get an occasional righty. Now, I never know which side I will get hit on.

Sometimes, I get hit on one side, I abort that one, and then it starts right up on the other side. This will go on for a couple of hours, switching back and forth. Talk about hell!

But then there is the king of all hits. The one where you get nailed on both sides at once. I agree with you. Those are the WORST hits ever! Usually I cannot abort those. I just end up riding them out. It causes you to reclassify all previous hits. Because THIS is truly a KIP10! All those that I had classified as KIP10, in the past, got lowered to a KIP9.

And quit worrying about going chronic! It may never happen! But then again, it may! And if it does happen, so what? You will deal with it! It happened to me, after 20 years of being episodic. I have been chronic for the past eight years.

But, you know what? I survive the chronicness! I even survive the hits on both sides! You know why? It is because I am a clusterhead! And I am an ornery ba$tard, who refuses to give in to the beast! Just like YOU are! We are the toughest sonmabitches in the world! We CAN and WILL beat the beast!

Just remember your three strongest tools in fighting the beast (in order of importance):
Attitude Attitude and finally, ATTITUDE!!

And when all else fails, and you are at the end of your rope, WE are here, to back you up, and help you back up to a safer spot on that rope! NEVER underestimate the power of this group of misfits! We may fight and bicker, at times, but when someone needs help, all that goes out the window, and we stand together in helping the needing family member!

So hang tough, look the beast RIGHT in the eye, and say: FUCK YOU, beast!!! (And it IS ok, for a sweet lady, to say that to the beast!)

Chuck

Title: Re: CH on BOTH sides??!!!!!
Post by Kate in Oz on Jul 9^th, 2007, 9:48am

on 07/05/07 at 23:24:36, ClusterChuck wrote:

But then there is the king of all hits. The one where you get nailed on both sides at once. I agree with you. Those are the WORST hits ever! It causes you to reclassify all previous hits. Because THIS is truly a KIP10! All those that I had classified as KIP10, in the past, got lowered to a KIP9.

Oh yeah, my kip scale has changed for all time now!!! I just hope to God that I never cop another one of those ever again, just outrageous pain :-X

on 07/05/07 at 23:24:36, ClusterChuck wrote:

NEVER underestimate the power of this group of misfits! We may fight and bicker, at times, but when someone needs help, all that goes out the window, and we stand together in helping the needing family member!

This is so true! I don't post often, but I do keep a regular eye on the site to see where everyone is at and honestly I have been reduced to tears so many times. Clusterville truly is a wonderful place, nothing is ever too much trouble, people go to such lenghts to help each other out, and lives have been saved. Angles inhabit this space for sure!!!

on 07/05/07 at 23:24:36, ClusterChuck wrote:

So hang tough, look the beast RIGHT in the eye, and say: FUCK YOU, beast!!! (And it IS ok, for a sweet lady, to say that to the beast!)

Chuck

I aint no lady :P

Thanks Chuck :)

P.S. Fingers crossed, that was the last hit of the cycle - shhhhh

Title: Re: CH on BOTH sides??!!!!!
Post by southwalessunshine on Jul 10^th, 2007, 5:55am

I feel your pain!
I get mild attacks that linger for about 3-5 days where I can just make it through the day with a few naps in between and kinda function, the pain is always on the one side of my head but it can be either side. However when I get the big attacks, it can also be on either side of the head or both at the same time. These attacks usually come after a few days of mild one and just pop in to let me know I'm not getting away so easily. As sson as the little ones start I have the finale to look foreward to! But I do get big ones off the cuff too and they pop up out of the blue and blindside me. When I get the little ones I take sumatriptan and an anti inflammatory, I've never been offered O2 or even had a doc discuss this with me! I only joined this site yesterday and heard about it for the first time. Could anyone help me out with a little info on how to get my doc to take this seriously? thanx.
When I get a bad attack I take a self injection of sumatriptan and an anti sickness melt should I need one. this is what the hospital consultant has set me up with. I've been taken off the preventatives ans was led to believe I'd exhausted all possibilities but reading here, I realise thats not so. My consultant saw me once prescribed the sumatriptan and told me I should think of taking anti epilepsy drugs and discharged me! no follow up apt or discussion of 02. I felt very alone but since coming here I feel overwhelmed with possibilities but very confused as to what I cando now. Any info would be gratefully received.