I have not had much joy looking on the web regarding this so I am asking here. Hope that is okay.

Weds and Thurs were definate single hits- no question about that level of pain.

Fri, Sat and Sun were weird; my eye hurt and it felt like small needles and slithers of glass had been pushed around my eye-socket and surrounds lasted about 40 minutes of sheer unpleasantness but it did not soar off into the level of pain that ruins life. The eye area felt like it had been slapped hard afterwards rather than smashed with a brick as it does after a really painful run in.

This is making itself annoying about every 12 hours and stupidly I know its coming as my nose starts to run and my eye waters but not as badly as it does when the thing is amped up. Feel restless and twitchy rather than the feeling of wanting to rip my eye out and try to do anything to make it go away.

I have an appointment with the headache clinic on Weds but I now feel a complete twit as this level of pain is not as bad as the autumn. Last time the pain got so awful living was not looking an attractive option and I feel like I am making a fuss over nothing much.


I am also worried that if I cancel the appointment because these past three days are only 2's I will regret it if another really nasty smack comes along.
Keeping a diary of the things.

Are these how 'shadows' are and how they 'feel' and if so can people suggest what might help until I get to see the clinic on Weds.

Mostly I am using ice packs for the ones that hurt a lot and   coffee afterwards as that seems to help with the bruised sensatation after it sneaks off.

That is why there is the KIP scale. The hits come at different levels. My last cycle was made up relatively low hits. If you have not gotten O2, it works great on these low level hits - push your doc to get you a prescription for home 02

I totally agree with the O2 suggestion. When I get the shadows (as I usually do each morning), I hit the O2 and get rid of them.

Also, as soon as I feel a hit coming on I hit the O2. I'm on the high flow with a demand valve and have found that I can abort a hit very quickly with this and not go thru all the pain.

BUT, I do NOT wait till it reves up - I hit the O2 at the first sign. I've found this aborts much quicker and I don't have the "hangover" afterwards.

You need to tell your doc you need at least a 25 liter regulator and an Opti2mask or a non-rebreather one.

I'm not as bad as some here (Chuck), but since August I've seen a BIG improvement in my hits with the O2 at the high rate with the demand valve and the right mask.

Hugs BD

I am still trying to get the hang of the kip scale. I ended up adapting a general pain scale as the one for migraine in the UK is only, mild, moderate and severe and it was not good enough to describe what that sort of pain was like.

Does this mean its possible to have a cycle that is mainly low hits?

Oh heck, does this mean it is worth trawling back through 'headache diaries' to find what I thought of as painful 'eye headaches' and see how they fall into an annual diary?

I honestly did not think to tell my neuro about those [smiley=embarassed.gif] because compared to the monster ones I did not think they could matter or could be part of CH. I just thought they were part of what my previous neuro referred to as typical of  'cluster migraine' and the equally helpful ' you will just have to live with it'.
I would not have made the connection that these could be lower hits if Weds and Thurs had not been so attention getting.

I should be able to get O2 at home but only after I have been to the clinic on Weds as I only got the diaognosis in Nov 08.
You guessed it I am counting down the hours till then.  
This time last year when I was on prendislone for a stubborn chest infection I did not have any form of headaches during or for three weeks after I finished the steroids.

This thing even in its lesser form still sucketh.

Thanks Barbera,
My new neuro has a specialist interest in headaches; he went rather thin lipped over my previous drugs and more so over previous doctors not referring me to a specialist neuro sooner.
Thankfully O2 and high flow regulaters are covered by the hospitals NHS budget and the staff will deal with the UK HOOF forms so I should not have to fight too hard.

Not so happy about using sumatriptain auto-injectors at Uni though but I know if it really hurts I would try anything.

I think I do have a tendency to leave off drugs longer than is wise; I will ask the clinic about getting a better hang of that too or I may have O2 at home and be stupid and not use it enough.

Go.  Tell them what is going on.  Your neuro is interested (wow, those can be hard to find!), talk it over with him.  

I recently moved, so had to go through all the steps again.  The last bad cycle I had, the gp was groping around, with a complete lack of urgency.  I finally got to see the neuro about three days after the end of cycle.  Here's the deal - now I am on his list, so am ready for a rapid response from the get-go for the next cycle.  We discussed meds, but my success with O2 makes it the primary abortive.  We are prepared.

Since then, I've been fortunate, had only cycles that never really got it going.  But my bad ones have all been in spring, so I'm now getting a little nervous.  It is good to know that I'm prepared.

Jon

I love the O2 but I never sell the Imitrex/Imigran injectors short as they are god-send. My approach is O2 first, when possible, and if not, I go to the injection and the relief is amazing.

If you don't have any indications of problems that allow you to use them they're a great tool for the buggy. It is good to have a couple of options.

Scott

I'm another fan of jumping on the 02 as soon as I get the tight neck and the queasy "here it comes" feeling. The faster I fire it off, the faster I can abort. I've almost eliminated the trex jabs by ALWAYS  having an E-Tank within arms reach while in cycle. I HATE how imitrex makes me feel.....but won't hesitate to use it when the 02 fails me. It's a true love/hate relationship!!

Joe

Katie, your neuro seems to want to help you. Please do tell him about all your headaches, including the shadows. Shadows, which is what it sounds like you are having, are important, because they could go into full blown hits at anytime. For me, a shadow is when my eye hurts, is red, my nose is running, sometimes I can feel it go around to the back of my head, but I don't have the full blown pain. It's just a shadow of a CH.

Also, if you still have the headache diaries, the parts where the other doc said you were having cluster migraines, tell him about those too. It's a good idea to take your diaries with you.

A lot of us use O2 by a non-rebreather mask, with a high flow rate. Get that from your doc, and if you can get imitrex injections... they work very quickly. Also, to the left, see the imitrex tip. This allows you to split the shots. For a lot of us, it doesn't take a whole shot to kill a hit.

Imitrex nasal spray works too, and some people say they work as fast as a shot. Maybe you can get both. Trex has some side effects that some people don't like. Splitting the shots minimizes this.

When you get the O2, as soon as you feel your head start to take off, get on the oxygen. The faster you get to it, the faster it will kill a hit. Or shadows.

Also, energy drinks, like Red Bull will kill a shadow and sometimes a hit. It's gotta have 1000 mg of taurine in it, with caffeine. There are different brands.

Let us know how it went. :)

Thanks guys; it has felt like a long five days.

I have located my diaries and I will try and explain the pain to the clinic this morning.
Decided it might help if I give them analogies of what it feels like compared to assorted accidents I have had so the staff can have more of an idea as pain is subjective.
Yesterday the b* made me yelp and stop what I was doing just to remind me its lurking with claws behind the milder stuff so yes I am glad I do have an appointment today as I am now moving to the wrong side of tired and that usually makes things seem worse.

Will let you know how it goes.

:)

The O2 has been ordered by the hospital with the high flow rebreather mask.
They have also ordered the smaller tanks so I can take O2 to university lectures with me. Should be arriving Friday. Now all I need to do is sort out the car and house insurance to cover them and let the local fire service know.

I have sumatriptain auto-injectors and the option of the nasal spray version too. Again should be possible to collect from GP by friday.

I also have topiramate rather than valporal [sp] as it was felt as I have two primary headache disorders that would be the better option for me personnally.

I was also told that what I was feeling is not a 'shadow' but real CH episodes; they just have not hit the level of 9's and 'kill me please' of the last cycle, the shadows are the tingles I have felt and thought were nothing before the pain soars.

It sounds like this might be true.  The O2 is a good safe bet.  Save the sumitriptan for when you're in a lot of pain or a pinch and can't use the O2.  

That's great news Katie....hoping the 02 proves the fix for you it's been for me. remember, speed is of the essence! A delay of 3-5 minutes for me can double my abort time.

Joe

Katie wrote on Feb 18^th, 2009 at 9:49am:

:) The O2 has been ordered by the hospital with the high flow rebreather mask. Do you mean a non- rebreather mask? I was also told that what I was feeling is not a 'shadow' but real CH episodes; A 'shadow' is a real episode. Just a low level one. Your Doc might have a different idea of what a 'shadow' than is usually used by the people here. From what you have written above I would certainly say you a suffering 'shadows'. they just have not hit the level of 9's and 'kill me please' of the last cycle, the shadows are the tingles I have felt and thought were nothing before the pain soars.

[smiley=grin2.gif] Oh heck....got to love CH for scrambling my brain.
Your right that should have read 'none-rebreather'.
Nothing like having a hit stuck in the waiting area and staggering in for an appointment to have the staff reach straight for the HOOF forms and a request to ask if one of the new medical students could come see. ;)

Was not fun at the time  but I am also glad that after 20 years this is being taken seriously as I was reaching the point of thinking I was the wuss who simply could not cope with lots of weird migraines.

I think it will take me a while to get the hang of the 'smaller headaches' being a less painful version of the same thing but I do seem to get a short warning [1-2 minutes] when the tri-nerve sends out 'tingles' round and through my eye. From what others have said about reaching straight for the O2 I am going to see if I can get that to work for me same as I do the aura  of migraine.

I have another appointment in 12 days and [hopefully if the newer drugs are helping me think a little better] be able to ask more co-herent questions about the whole wretched thing.

I guess its going to take me a while to stop auto-piloting into treating this thing the same as a migraine.

"Knowledge is Power!" This is definitely a condition where it behooves you to educate yourself and work in partnership with your medical care giver. Sounds like you have people who believe you and want to help you. Get yourself educated to the point you can help them help you. Crossing my fingers for you!

Joe

I knew this thread was here somewhere.....and glad I found it.  

I've started yet another cycle but so far the pain is bearable....possibly shadows?  Since yesterday they've come in the mornings and evenings, but again it's nothing I can't handle.  But I'll admit, I sat in fear waiting for a full-on hit.

During a cycle, is it possible just to have shadows but not the full head-bashing hits?  I really need to do my homework and beg, plead, demand, O2 from my dr.

Thanks for letting me ramble....
Sonnie