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.

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

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.

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

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.

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

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.

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