They’re back :-( but feel a fraud
They’re back :-( but feel a fraud
I had SUNCT for years (chronic )
originally finally diagnosed via migraine centre, before anyone else would listen.
I'm hyper allergic to NSAIDs , so any form of that was out of question , and have numerous other endocrine issues so also already on various steroids and replacements, so they were out too as could compromise that treatment.
eventually had a few GONBs in occipital nerve (around every six months ) which helped a lot! Was kind of weird because I would still get what I call shadow attacks (all the side symptoms but very little or very manageable pain - around the same as what I would call an annoying headache. )
Managed to get prescribed hi flow oxygen for between those times (block wearing off ) which I still have (no way I was giving it up )
Then saw a different neurologist , and he offered a series of experimental Nerve blocks around my right eye and temple.
The thought was terrifying, but I was going through a bad bout of them at the time and would've allowed anyone to do anything at that time.
but they worked!! Ok I had about 4 days of the right side of my face feeling like the Peter Gabriel 3 album (lol) but they were gone!!
this was in about 2017 (I think ) and I've had a good few years FREE
However in last couple of years , they have kind of been creeping back , but again largely what I would call shadow attacks.
Odly enough my wife recognises them faster than me! I'll grumble about a bit of a head and carry on
but she spots the mood shift , and notes my right eye looks puffy.
Been slowly increasing in severity, but until this week mostly just annoying (albeit with an underlying terror that they were coming back )
but this week I've just had three days of ... I don't know ! Pain yes but I'd say around 3/4 (not quite pacing ) enough to dive for the o2 once or twice , but near full autonomic side effects , and the resulting miasma that follows.
today is the first day I've had enough cognitive power to even remember I was a member here , but hesitant as they're still not what I would call a chronic ch
sorry for the novel - not sure I'm even asking anything ?!?
more somewhere to release , and wonder if others have had remission and return but with lower levels?
Is there a even term for it ? (I need to see my gp soon as I need to quit work for numerous reasons (health related ) this is more the straw that's breaking my back
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Glad the experimental injections worked so well. Some bouts of ECH can be shorter, or have relatively lighter attacks, especially in later life, that may be true for sunct as well? I'll have to check, but they still have the potential to be horrific.
When there's shadowing there's always that feeling of dread for what's potentially around the corner, also, for me, the fear that the medication that works will be denied.
Above all else, we're a community, the few that understand the suffering and uncertainty our conditions bring: Share as much as you need.
Thanks Phil
always good to know you're not alone
interesting on the info on ECH and later life, I do wonder also whether it's partly to do with increased pain tolerance (which personally has also rolled into general pain tolerance) or slightly an evolved ability, for some, to block some of it out ?
I have noticed the pain is very much still there , but there's almost like a detachment from it (does that even make sense ?)
during one last night , I could even almost see/feel the very recognisable pain (very different to any other kind of headache ) and it was certainly there, but it was almost like around the corner.
However, the side effects during and post attack are very much still with you : right eye puffy , trying to close up , sinuses feeling blocked with expanding putty then flushed with pure chlorine, an inability to concentrate on anything , lack of focus, attention or retention. Plus the strange miasma and exhaustion that can hang around for hours even next day, and of course the mood swings that come with it. (I feel so sorry for my long suffering wife who has miraculously put up with me all these years )
Originally , during my earlier chronic cycle , I thought tfat was ALL pain related (seemed logical ) but now , with these shadow attacks , I'm seeing it's more like a short circuiting of my brain , with the pain being the (very unpleasant) side effect.
im truly grateful that, at the moment, the accompanying pain is (mostly) manageable. But the effect on the rest of me is nearly as disturbing psychologically
ps sorry I was absent , during the clear years. But it's like a disassociation thing. You don't even want to think or talk about them , in case it wakes up a sleeping demon .
selfish I know
also apologies for poor text , screen concentration, is limited even during clear spots.
Indeed, CH is unlike headaches. Personally, it's more the actual pain of having your eye damaged with power tools, I'm sure the pain triggers soft tissue inflammation and other autonomic defences as if it was a physical attack.
I'm 61 now. My CH bouts are less frequent and relatively milder than the onslaught I experienced over previous decades; perhaps the brain learns what the medication does? Or it could be my hypertension.
Many of us avoid the forum while we're clear of pain, or at least on top of it, but there is a Facebook group where people chat more: Less official and more casual I guess.