Behçet's UK
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Lightning

Watched the most amazing electrical storm last night in the bay of menorca where we currently are.

Reminded me very much of the TN that I have & am currently flaring with.

The form lightning through the face into my teeth and jaw followed by the bellowing clap of shock following it.

Horrid condition I truly hope my lamotrigine will ease.

What are the best pain meds for it? Any ideas?

Thanks

C

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Just wondering. Are you a smoker? That contributes greatly if you are.

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Hi expect - i vape these days as I found it eases my oral ulcers.

Is it the nicotine or the action? I haven’t had the pain yet while actually using but would make sense that it would come..

Thanks for replying

C

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I was asked by my rheumatology consultant whether I used to smoke which I replied I did and quit 18 years ago, I've had more health issues since giving up... she told me there was links she had read about in relation with quitting smoking and Behcet's... I did a bit of research at the time and found a few articles:

ncbi.nlm.nih.gov/m/pubmed/1...

And then recently published concerning smokers and Behcet's:

ard.bmj.com/content/77/Supp...

ncbi.nlm.nih.gov/m/pubmed/2...

I took it from my consultant that she believes there could be a link, as I do with tonsillitis and strep throat and BD

Gillian

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I stumbled across articles a few months ago.

My troubles mostly started following two car accidents one of which was particularly violent where my body was shaken for several seconds.

I then hit the top of my head on a concrete beam in our cottage which caused a small brain bleed.

I stopped drinking alcohol and smoking that day due to taste.

But my behcets etc started from that point on.

I suspect that my body has just reacted those events.

But since starting to use a vape I have had a massive reduction in oral ulcers. Maybe linked maybe not but either way the relief is very welcome and the sores are far less severe.

Odd huh?

C

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Blimey that's amazing I have joked several times about starting smoking again simply because my life felt so much better:-) but it is 18 years ago...

I had an accident 10 years ago I fell off a ladder and was embarrassed at the time to get checked out I was on my own and managed to drag myself on the floor into the house and did not see a doctor for many weeks later who said I appeared ok I was battered and the all over but I always try to link things to how things have made a condition I've had all of my life become so much worse... I also had my horrible 50 year old tonsils out and I blame them the most because everyone blamed them... things just got worse.

You take care and hope you can get some relief whilst you are away :-)

Gillian

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Strange that you should mention the tonsillectomy - I became ill with unexplained illnesses shortly after or around the same time - never being the same since then....

I wonder if it’s the physical trauma our bodies can be subjected to that can trigger it in some of us.

Sooo pleases to be home after our break - although not sure about returning to work tomorrow after being off for three weeks even on a phased return. I am concerned about how that might make things - but can’t be off forever.

Take care.

C

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Good luck tomorrow try if you can to pace yourself I always try to write down what I want to achieve and don't beat myself if I don't get it all completed :-)

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I found that the least side effects I had is with the painkiller called Stopayne also called Stillpayne in some countries. My specialist has given me this as I hate opuid treatment that is usually given for the type of nerve pain you are mentioning. I have had it in the right hand side of my face and even had a dentist work on me teeth, thinking that my teeth where the problem. However this sounds to me like an active nerve flare. Hope you feel better soon.

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Thanks for taking the time to reply. I agree the opioids are terrible. I try hard to only use them when absolutely necessary to prevent me from being admitted to hospital.

Thanks

C

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My pleasure, I feel like I have lost so much control already and the meds make me lose more control. But I do agree I also do have to take it to prevent from being admitted. Today sadly is one of those days for me too. Bit hectic in my legs with the neuropathy running me batty

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I am sorry to hear that.

Totally get it - do your legs feel as though you have ants running on or in?

C

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Fire ants for sure, burning like &(&&&#@@!^# I have too many bad words for what I am feeling at the moment LOL let me not start

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