Hi, I’m not having a very good time presently being diagnosed with dysesthesia. I’m using a capsaican based cream that is so HOT and am having to be so careful with it. Yesterday, my hair must have brushed against the cream on my cheek and went into my eye. It was all systems go in the bathroom rinsing cold flannels and having eye washes, a huge mistake never to be repeated! I’ll be tying back my hair from now on.
My question is.....it was thought that the dysesthesia was a result of my latest op. However it has now also been put to me that it could be due to the withdrawal of Tegretol - has anyone else experienced this?
Hi lyn,
oh that sounds bad you poor thing,somtimes i get really hott hands and palms i just want to put them in the frezzer to make them feel beta what kind of pain do u feel when u get dysesthesia ??? Is this from having TN… i hope your pain goes away for u yes i think next time u beta put ur hair up the silly things we do in pain lol once i put ice cubes on my eyes and i thought it would help my pain but made my eyes feel like i had forzzen them lol lets hope u have a pain free easter mina xxx
Hi Tamina, than you for your reply. It’s like a chronic pins and needles, sometimes feels like burning, its a constant in as much as nothing seems to reduce the pain of it at all. You know that beautiful moment when you wake up and just for a nanosecond everything’s ok, then whack, no it isn’t, I love that moment!
Hi Lyn,
Yes i know that moment it feels great,sometimes i get like that when i have had a flare up and think it is gone then bam its back.i hope the pins and needles goes away for a while so u can be pain free sometimes it feels like pain is never ending but we hang in there hopeing for the day when it stops.
mina xxx
I think I know exactly what you’re describing here - I get this burning in my face, neck and breastbone. The doctor at the hospital had a different name for it, but no one has actually diagnosed it as a condition, they just assume it’s another “symptom” of the TN.
I find it to get unbearable at times and i also use a capsaicin cream called “zostrix” to relieve the feeling. I always found that ironic, using a heat cream to make a burning symptom feel better / improve / go away for a few minutes. I use heat packs a lot also - that has been very unpleasant thing to do through summer. This dysethesia makes the wearing of many types of clothes impossible at times if they sat in the wrong place over my chest / neck as there constant touch on my skin was just terrible. The seatbelt in my car sits over this area also and some days i can’t go out cause I cannot wear the seatbelt in my car.
I do not believe the dystethesia is a result of either med withdrawl or the Op I’m sorry to say - because neither of those scenarios would explain why i too have this condition / symptom. I wish i had more answers now, but I’ll do more research and speak with my GP about this when I see her in a few days. I will “try” very hard to remember to do this - but my memory is just abhorent but I will write in on my list now.
Best wishes Lyn, I hope you’re feeling better today and I look forward to chatting further with you about this!
Kerry, thank you so much for your post, its so good to twin! I’ve had the full on burning/tingling before, and this ‘dysesthesia’ thing is kinda similar but different, which does not make much sense I know! Would you say that its more like a chronic pins & needles type thing? It only kicked in after my anesthetic had fully worn off, and I’ve had this 24/7 for over 3 weeks now.
My cream is Zostrix too, it says ‘HP’ also, I assume that this may mean high potency? Not sure, but you most certainly need to be so onto it after application don’t you. I totally got your comment about clothing touching it. I was even sitting with my hair clipped back and STILL somehow my eye was burning about an hour after I put it on. I figured that maybe it was a dust particle - you know when the sun shines into the room & you can see them floating around, kinda freaks you out sometimes!
I read that drinking milk helps with the burning, so I did and can vouch that it does! Am not sure why though!
And…re your comment about not understanding how it works, well neither could I, but I did ask a house surgeon last week, who said that when the nerve feels the pain caused by the capsaicin in the cream it sends a message out “OUCH” . The brain then releases endorphins being your body’s own painkilling mechanism, I guess that it comes under the title that the body is a remarkable thing.
I’m seeing the surgeon again tomorrow (I see him weekly), last week he prescribed amitriptylene tablets, I did get a little relief for a couple of days only. Yes please, stay in touch!
Lyn
Have you ever heard of the illness anesthesia dolorosa? It’s a possible result of some of the surgeries available for TN and it’s symptoms include needles and pins feeling on the face and a burning sensation that is incurable. I have no idea if this is what you are experiencing but look into just to make sure ok? I hope that you find relief from your suffering. Do you feel like that Capascin hott lotion does anything to help?
Lyn said:
Kerry, thank you so much for your post, its so good to twin! I’ve had the full on burning/tingling before, and this ‘dysesthesia’ thing is kinda similar but different, which does not make much sense I know! Would you say that its more like a chronic pins & needles type thing? It only kicked in after my anesthetic had fully worn off, and I’ve had this 24/7 for over 3 weeks now.
My cream is Zostrix too, it says ‘HP’ also, I assume that this may mean high potency? Not sure, but you most certainly need to be so onto it after application don’t you. I totally got your comment about clothing touching it. I was even sitting with my hair clipped back and STILL somehow my eye was burning about an hour after I put it on. I figured that maybe it was a dust particle - you know when the sun shines into the room & you can see them floating around, kinda freaks you out sometimes!
I read that drinking milk helps with the burning, so I did and can vouch that it does! Am not sure why though!
And…re your comment about not understanding how it works, well neither could I, but I did ask a house surgeon last week, who said that when the nerve feels the pain caused by the capsaicin in the cream it sends a message out “OUCH” . The brain then releases endorphins being your body’s own painkilling mechanism, I guess that it comes under the title that the body is a remarkable thing.
I’m seeing the surgeon again tomorrow (I see him weekly), last week he prescribed amitriptylene tablets, I did get a little relief for a couple of days only. Yes please, stay in touch!
Lyn
Hi Michaela, thanks for your post. I’ve tried really hard with the cream! It seemed to not irritate as much if I used it 4 times daily (which is what it said on the instructions) but it really caused a few problems with me, mainly because of the area not being covered and the ‘touching’ aspect (fingers & hair mainly) compared to if it was applied on an elbow for example. As far as helping the condition I would have to say no, I don’t feel as though it is helping and have not used it for the past few days. I have looked into the other condition, and may revisit it.
Michaela said:
Have you ever heard of the illness anesthesia dolorosa? It’s a possible result of some of the surgeries available for TN and it’s symptoms include needles and pins feeling on the face and a burning sensation that is incurable. I have no idea if this is what you are experiencing but look into just to make sure ok? I hope that you find relief from your suffering. Do you feel like that Capascin hott lotion does anything to help?
Lyn said:
Kerry, thank you so much for your post, its so good to twin! I’ve had the full on burning/tingling before, and this ‘dysesthesia’ thing is kinda similar but different, which does not make much sense I know! Would you say that its more like a chronic pins & needles type thing? It only kicked in after my anesthetic had fully worn off, and I’ve had this 24/7 for over 3 weeks now. My cream is Zostrix too, it says ‘HP’ also, I assume that this may mean high potency? Not sure, but you most certainly need to be so onto it after application don’t you. I totally got your comment about clothing touching it. I was even sitting with my hair clipped back and STILL somehow my eye was burning about an hour after I put it on. I figured that maybe it was a dust particle - you know when the sun shines into the room & you can see them floating around, kinda freaks you out sometimes!
I read that drinking milk helps with the burning, so I did and can vouch that it does! Am not sure why though!
And…re your comment about not understanding how it works, well neither could I, but I did ask a house surgeon last week, who said that when the nerve feels the pain caused by the capsaicin in the cream it sends a message out “OUCH” . The brain then releases endorphins being your body’s own painkilling mechanism, I guess that it comes under the title that the body is a remarkable thing.
I’m seeing the surgeon again tomorrow (I see him weekly), last week he prescribed amitriptylene tablets, I did get a little relief for a couple of days only. Yes please, stay in touch!
I was diagnosed with dysesthesia and paresthesia in the v3 region "only" before being diagnosed with TN. however when dysesthesia presented itself in the v1 region YES it was confirmed to be drug withdrawl related.
but I will write in on my list now.