Hi Guys,i was told last Wednesday that i have T/N. I'd never heard of it before,and so you can imagine how i felt after i had a quick look at some of the info on-line!!!!!!!
My doctor had given me Tegretol,the first couple of days seemed like a miracle,the pain stopped,even when eating.I was over the moon,so you can imagine how i felt when gradualy its started to return.A few sharp ones now & then,but mainly when im eating,which is not good as i love my food.I started on just 100mg tabs,1 morning,1 evening,but i've had to take 1 in the afternoon as well.
It says on the pack i should watch out for sighns of a sore throat,well my glands seem to have been up since about Friday,should i let my doctor know about this?
The meds seem to be making me feel very slightly "slow" will this increase the higher the dose?
Any info you guys could give me would be great,i mean its ok looking on-line or listening to your doctor(mine told me nothing!) but nothing could be better than to hear it from "the horses mouth" so to speak.
Thanks guys,lets see how today pans out,will i be able to eat & brush my teeth,lol!!!!!!! kind regards Lisa xxx
Lisa,
About the glands, according to my new neuro my TN might have started because of a swollen parotid (SALIVA) gland. It had been bad for about ten years, finally had it removed. It was twice it’s normal size and had been pushing on everything in my jaw area, including where this nerve it. I had to have it taken out because it was painful…but there are treatments for the glands short of removal that might lower your pain in the TN nerve.
And, if you are feeling slow, my experience is that you might try another medicine. I felt that way on one other one but teg was great for me. Try them until you find one that works!
Good luck,
Kristi
I don’t know about many others, but during attacks of TN etc., my salivary glands swell up as a reaction to the pain in my face. Unfortunately for me, the sheer amount of swelling that’s caused also causes me great pain in my neck. Some peeps use either an ice pack to help reduce swelling or like me a heat pack to reduce the pain from swollen salivary glands.
But as Kristy & Ro have said - always best to get your doctors aware of what’s happening and if possible, maybe they can check your glands out to make sure or determine the cause of it. My docs didn’t know why my glands swelled up in my neck, but ultimately determined they were swelling in response to my face pain. Nothing they could do for me, so it’s just part of what I now put up with. But like Kristy, I have heard of many others who have had issues relating to their parotid gland and TN, so yes, get it checked out.
When Tegretol’s working properly, as it sounds it is for you - that is wonderful by the way! It doesnt mean the attacks have stopped, for me when Teg first began working, I had no pain, but I could still tell when an attack was happening, a very weird sensation. But one I was grateful for!
I’m so sorry to hear of your recent diagnosis with TN Lisa! But I’m still, very glad you have found us here and I hope we’re able to provide you with the support you need and answer as many of your questions as we can!
Hi Lisa,
Sorry you are having pain. I know what you mean about brushing your teeth as most of us have had pain when doing so. I have very little pain now since MVD surgery. I hope you are able to get the right combination of drugs that will relieve your pain. Keep us posted.
Liz K.
Hi Lisa,
Sorry to hear that you are in pain. I am so glad that you found this web site so soon. You should get the book “Striking Back”, it has lots of information on TN. You should ask your doctor for an MRI and MRA to see if you have a blood vessel compressing on the nerve. I am going to have MVD surgery on Friday. I have had TN for 8 years. Your dose of Tegretol is low, I am now taking 1200 mg per day. You should get use to it after awhile. Yes higher doses will some times make you feel “slow” that is one reason for the MVD surgery. Hope you get all your questions answered and remember we are here for you.
Debbie
Hi Guys,well yesterday was a bit of a mare,brushing my tegs was not easy,trying to avoid the paiful areas!!! And the first 4 or 5 hours wasnt good,just speaking was a challenge My throat was worse than ever,so i rang the docs.He wants me to go for bloods this morning,then to book an appointment with him.Im hoping its just a bug!! But apparently it could be the Tegretol changing my blood,whatever that means(any ideas?) I decided to up the dose to 2 three times a day,i cant let this crappy condition stop me brushing my tegs,eating or talking(at least 2 of my fav things,lol) Will let you know how i get on.
Lisa xxx
Hi Guys,went for bloods yesterday,got to go for results in a weeks time.took 600mg’s today,2 am 2 lunchtime,felt fine,no pain all day.Took last 200mg’s pm & within bout an hour felt quite giddy,not a bad feeling,just strange!!!
what’s the sp with the drugs,am i just suppose to take the coarse & it’ suppose to stop the pain till the next time it occurs?Not looking forward to that speak soon Lisa xx
Hi Ro,dont worry i dont think ur lecturing me,any info is good as my Dr told me absolutly nothing.I went back to the dentist(2nd time) as advised by the Dr.The dentist knew what it was just by my description of the pain.He gave me a letter to take to my Dr.I took the letter,gave it to him,he looked at it,looked in my ears mouth & eyes & sighned a perscription.He gave me no explanation to what this was,how it would effect me,my options on how to deal with it,he never offered me an MRI scan,he just seemed to except the word of the dentists letter.As for the meds,all he told me was to start on 200mgs twice a day,can be increased to 200mgs 3 times a day if needed.So as you can see i need all the info i can get,as im getting very little from the people who are suppose to give me it!!! i’ve got an appointment to see the Dr next week for the results of my bloods,so if you can think of anything you think i should be asking at this early stage i would be grateful to hear it,thanks again Ro.kind regards Lisa xx
Lisa,
Sorry to hear you are having pain. Several have posted some good advice. But so get a referral to a neurologist. I had problems with tegretol but I don’t recall exactly what they were. My neurologist does not like to prescribe it. He gradually took me off tegretol when I began to have side effects and gradually added neurontin.
Liz K.
Hi Guys,went back to GP yesterday,bloods seem fine,except my cells are a bit on the big side!! He asked me if i drink alot,i dont,maybee twice a month if that.So today i’ve gotta make another appointment for more bloods,DEEP JOY,i hate needles although i do give blood:(
I asked him a few questions:how can we be sure its T/N are there any tests,his answer was there are no tests its based on a clinical diagnosis.He has only treated 8 cases in his career.He thinks my T/N is “typical T/N” When i asked to have an MRI scan he told me that its not something they generaly do!!!
As for the meds,he wants me to stay on Teg for about 3 months,he says it may take a while for it to get into my system,but when i asked the pharmacist at boots she told me that if its gonna stop it ,it should be literaly a few days!!! i asked what happens if Teg doesnt work,he said we will try a different drug the name of which escapes me,but he said the side effects of which are worse than Teg!!! He said there are surgical options but they will be further down the line.So guys im gonna stick with the Teg for now & see how it goes.Oh get this,he said i dont have to take the Teg religiously only when i feel i need it,is he joking!!! i took 2 late the other day & it started caneing me!!! anyway speak soon,hope you are all pain-free today xxxx regards Lisa xxx
My throat was worse than ever,so i rang the docs.He wants me to go for bloods this morning,then to book an appointment with