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Hospital Lighting nearly killed me

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#1 Tue, 13/10/2015 - 12:39
MARKSAINT
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Last seen: 8 years 5 months ago
Joined: 26/02/2014 - 15:13

Hospital Lighting nearly killed me

Hi sorry I dont turn up here often. 
I have had CCH/SUNCT for some time, but nerve blocks and O2 seem to have had things (mostly) under control. 

In fact recently they have been curiously quiet, I even had days where they were almost non-existant, or at least livable. Although I rarley comment on that, almost as though I am scared to say it, in case I reawaken the beast. 

I am well overdue a block, partly due to hospital admin and I am 'supposed' to be seeing someone about a possible nerve transection (not sure about that - when they're behaving, it seems a bit drastic, but if you asked me while having one I'd hand you a carving knofe and tell you to get on with it). But again recently things have been very quiet.

That was until Friday.
Friday I accompanied my wife to hospital for her to have nerve blocks in her spine. We were there most of the day but about 2 hours in they started! I managed to keep myself together (for the most part) and remained there (nearly wrecked my jaw with the clamping, but the day was about my wife not me) and got through it.
But now they seem back - with interest! All weekend I have had more attacks than I have had in months and they are more major, and typically when I am nowhere near my 02 (and I cant take NSAIDS)  

Right now I'm praying this is just a minor blip, as I had almost forgotton just how bad they could get, foolishly believing I had got used to the pain (well to the point of being able to work through it) 
Luckily I work from home and away from this kind of lighting, as I am convinced certain types of florecent lighting (and some sunlight) can act as a trigger for me (fatigue being the other major one) . 
Anyone had any luck with coloured lenses - do they work? Or do they just filter the light, not the flicker? I need my eyes checking anyway, but I dont want to pay extra for snake oil (neither can I afford it)

Sorry to ramble - been a bit shell shocked after the weekend

 

 

Tue, 13/10/2015 - 13:29
Lorraine
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Last seen: 10 months 4 weeks ago
Joined: 24/06/2015 - 12:33

Hi

I have SUNCT so not in the same league as CH but mine too is recently much worse. I think this has to do with the daylength/hypothalamus aspect of TACs. I am also very sensitive to any bright light but SUNCT is related to migraine so I am not surprised. I wonder if its the sudden change into bright light that affects you as it does me. My pains are worse morning and again afternoon/evening (with a fantastic break usually at lunchtime!). Maybe you need a rescue drug available to you?

Tue, 13/10/2015 - 13:53
darren h
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Last seen: 5 years 5 months ago
Joined: 20/03/2015 - 11:43

hi mark, sorry to hear your having a bad one, well done for coaping in hospital and putting your wife first, that must have taken a hell of a lot of self control on your part, as for lghting yes some strip lights set me off and i get verry light senstive in a bout, ive not tryed coloured lenes but verry dark shades work or welding goggles are good on bright sunny days but look daft, no probs with a good ramble thats what we are here for, to listern to help to laff an cry togther, we all share the same pain and unerstanding, we ALL matter,  i hope both you and your good wife are pain free soon as, theres a wonderful world out here to enjoy, all the best, dh 

Tue, 13/10/2015 - 16:28
Harrietjt
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Last seen: 6 years 4 months ago
Joined: 22/10/2014 - 12:47

Oh Mark,how awful for you! I do know someone else who can never go into office type lighting without it triggering a major cluster attack. Sounds as if it has activated something.....hope it settles down soon.

Harriet.

Tue, 13/10/2015 - 17:37
MARKSAINT
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Last seen: 8 years 5 months ago
Joined: 26/02/2014 - 15:13

Thanks for the kind words (all)

I have had issues with lighting on and off (pun intended) but have come to the conclusion it is more to do with the spectrum/frequency than brightness. Some sunny days walking the dog without my sunglasses (read because I forgot them) can be ok  , but some days even bright cloud can end up feeling like being hit in the head while the Pick Axe Demon plays a round of golf through your skull. Which is kind of ironic considering where I walk the dog :-) 

Some offices, supermarkets, offices are OK but others, especially those with masses of defused striplights and no natural light, and you end up with tooth and head aches from constant jaw clamping (my means of pushing through pain, that has cost me half my teeth) .
Luckily(?) I work from home and have good lighting - the office lot are pretty good on the whole and even try and have meetings in the offices that arent in light boxes.

Unfortunatley I am highly allergic to any kind of anti inflamitory (quite spectacuarly so) so my drugs are down to those not much use to us. I was on Lamotrogine for some time (on increacing doses) but that proved fairly inaffective - so I stopped 

The nerve blocks have been the best (after a fashion ) and do have the weird effect of realising you are having an attack but with no or little pain. 
I did have a weird reaction to the last one, but it did end up giving me my clearest run in years (down to a couple a day and almost managable pain levels) Which is why they are supposed to be looking at the trans-section but I seem to have dropped off the radar (again). 
THe 02 was long fought for, and I am never sure whether it actually works or is just a good crutch/mind focus tool, espciallly with night attacks. 

I am my own worst enemy in not letting on how much pain I am in, I hate making a fuss and distressing others, but that of course comes at the cost of people not really knowing how bad things can be. Although my wife can spot me having one a mile away.

Hopefully this is just a temporary spike - but somethign in my head recognises the signs and knows it probably isn't ;-/  We know ourselves better than most, and usually more than the experts. 

Tue, 13/10/2015 - 17:49
MARKSAINT
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Last seen: 8 years 5 months ago
Joined: 26/02/2014 - 15:13

PS Hi Darren 
I see by your post in another thread you're a fellow biker Biggrin

I actually find the warm grip of the lid around your skull and almost pure 02 being rammed up your nose one of the most managble times to push through 'a head' I also think the single point focus of riding keeps me on the road where in the car I would have to pull over . 
I also think the tinted visor and wraparound shades may help with light, but that would look even sillier in a car than welding goggles on a golf course - haha

 

Tue, 13/10/2015 - 23:19 (Reply to #6)
darren h
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Last seen: 5 years 5 months ago
Joined: 20/03/2015 - 11:43

hi mark, yes 26year club member 3bs hampshire, wrap round shades are the only way i can ride some times, ive had a few attacks on the road so have to stop and deal with them, not easy but i do, i wont let this condition beat me again, i just cant say when i can get any where just that i will when i can, i guess now ive got help and support from ouch members and more importantly the right infomation about my ch condition and meds, ive come to terms with it all, it cant get much worse so it can only get better i hope, also a good sence of humor helps alot we need every smile we can get, d

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