You might be losing a lot of things [especially cash] but your sense of humour is in great form. Thanks for the much-needed laugh. x
Vic Maidhof said:
Hi Pat, Tegretol is the only med that I have found that can ease the intensity of TN pain…but your right about the side affects…everyone is different…in my case I got lazier, balder and fatter then I was. When I lit up a $ 10 cigar they didn’t taste good anymore so I had to quit my $ 60 a day habit…also I was thirsty, all the time, but I wasn’t allowed to drink my usual case of beer a day…so instead I hate cheese burgers…I thought I was losing my hair, but my wife said it was my imagination and reminded me that I had been bald as an egg since my 20’s…it was pure hell…but now Im back on track eating tegretol by the bottle, and paying $ 100.00 a session to a chinese acupuncturist who doesn,t speak english and won’t take checks…Im hoping to get relief from acupuncture but all Im relieved of is my cash…so hang in there kid…there are different types of drugs besides tegretol…but it works for me…Vic in San Diego
Hi Pat,
Anything to relieve pain is worth a try! Gather info, but don’t get overwhelmed where you scare yourself out of options.
Not to influence anyones decision, here’s my experience:
I started on Tegretol the 2nd week of my TN1 diagnosis. For three weeks, the dose needed increasing to near maximum. I did have a couple of days of relief; though my anxiety of pain returning was off the charts.
I noticed red bumps, itchy-burning and the rash increased. Four weeks into Tegretol, I was driven, from work (LNA) by my boss (RN) and diagnosed with Toxic Epidermal Necroylsis (TENS).
That was an interesting time! There are a couple of ‘burn’ pictures on my page.
Just one of my pain diversion tactic!
$10 cigars…Vic, what brand of beer?
Dear Bob,
I’ve just looked at your photos & your skin was in an awful state. I can imagine how painful it must have been. You’ve been through a lot of other things too but you seem to be pretty positive about life. Your tegretol dose was high compared to mine, I’ve been prescribed only 600mg but I’m holding off the medication until my eczema calms down. Thanks for the wise advice, hope you enjoy Vic’s choice of beer. x
Bob Snodgrass said:
Hi Pat, Anything to relieve pain is worth a try! Gather info, but don’t get overwhelmed where you scare yourself out of options. Not to influence anyones decision, here’s my experience: I started on Tegretol the 2nd week of my TN1 diagnosis. For three weeks, the dose needed increasing to near maximum. I did have a couple of days of relief; though my anxiety of pain returning was off the charts. I noticed red bumps, itchy-burning and the rash increased. Four weeks into Tegretol, I was driven, from work (LNA) by my boss (RN) and diagnosed with Toxic Epidermal Necroylsis (TENS). That was an interesting time! There are a couple of ‘burn’ pictures on my page. Just one of my pain diversion tactic! $10 cigars…Vic, what brand of beer?
Hi Sabrina, I hadn’t realise that there were other drugs than Tegretol so it’s reassuring that there are other options. We don’t have Tylenol here in the UK but I guess it’s an everyday painkiller like aspirin or paracetamol. I’m more positive about trying drugs now but as my symptoms have lessened since I stopped sleeping on my face I’m going to wait a week or so before the next step. x
Sabrina Ellis said:
Hi Pat, Tegretol is usually one of the first medications prescribed to treat tn pain.All medications have side effects and no one really knows how it will effect them until they try it.If you read the side effects of tylenol,you would never try it.You may want to try it starting with a very low dose and gradually increasing it,allowing your body to get used to it.If you can’t tolerate the side effects,there are many more meds for you to try.