blood work should be done when taking ANY amount of tegretol, although rare it can cause all kinds of blood disease! read pharmacy drug insert carefully! so if your gp isnt doing routine blood work i would be looking for a new gp this is standard for tegretol users. acutally i wouldn't let my gp manage it although he is an excellent dr. i let my neuro surg and neurologist do my medications then i still research a lot and talk to pharmacist too.
you are your own best advocate!
gentle hugs and blessings for pain free days for you
Hi Rosinka I have been taking Tegretol Regard for 11yrs with & without other medications for my TN. My dose has been as high as 1600mg/day but I have been advised to reduce to 1200mg/day with other medications, I am trying to get the correct combination. The suggested dose is 800mg/day (see Insights - Facts and Sories Behind Trigeminal Neuralgia by Dr Joanne Zakrzewska page 173). This is an excellent book, very informative. I am just trying to get the correct combination. Tegretol Regard can as others mentioned damage the liver, it can also reduce the bodies white blood count and sodium levels. It is imperative to have your bloods checked regularly (6monthly) to make sure the blood levels are correct and no damage is done. I continue to be monitored 6 monthly. However it has been the only medication that has worked for me without side effects. It is important if you are increasing or reducing Tegretol to do it slowly. Do not eat or drink grapefruit when taking Tegretol as it interacts with it. I hope this helps.
You know what? I had this conversation about the different meds that do or did or didn't work that I am or was on and I came to the conclusion that for my breakthrough pain that breaks through the oxycontin 40mgs. that I take every 12 hours, the 800 mgs neurontin x4, amitriptyline 25mg x 3, cymbalta 60 mgs. Requip 1mg x 3 When it supposedly breaks through all that ...I've found that oxycodone 10mgs and 650 mgs of acetaminophen or more does the trick. Less acetaminophen and it doesn't do it. Now I've been diagnosed with lymphocytic colitis and am not supposed to take ANY NSAIDS at all but I've got a pill for that too and I'm willing to walk a fine line here to NOT HAVE BREAKTHROUGH PAIN! If the colitis gets bad I will back off and heal a bit. It blows my mind that Tylenol is what I need to beat the pain back but it is what it is and I figured I'd share.
We are getting hammered with a blizzard right now here in Northern Michigan and I've been in bed a bunch today because it took all that plus the heating pad to get me through today. Twinges of headaches keep threatening me and the only thing that fixes that is a shot that I hate so I hope I can keep it back but my G-babes are quite noisy today so it's a bit of a challenge.
I am sorry that you need to struggle with the medication embalance without a gp to help you. It makes me quite nervous for you as this is a strong medictaion and you should be supervised. I am closely monitored by my neurologist and gp. I wish you many pain free days ahead.
Extra strenghth Tylenol was a great friend to me too.I also would prefer to roll the dice on future possible liver trouble as opposed to being curled up in pain.
shinglesdidit said:
I am off it now and taking amitriptyline 25 mg 3 times a day. I was taking 400 mgs twice a day but went off because I was falling alot. The amitriptyline is not quite doing the trick yet. Lots more breakthrough pain and then they changed my med for that as well because the FDA pulled it...too much acetaminophen in it...so what do I do, I just take the Norco and chase it with a 500mg tylenol because that combo WORKS. They won't like ti but I will not sit in pain when I know how to push it back. My guts are already a mess from years of pain management. Sometimes you just have to do your own pain management if you know what works. My thoughts are with you. Be sweet to yourself!
Thanks for that link to Novartis, you just would not believe the limited amount of information on the UK leaflet.
Mimi said:
If you are taking Tegretol please read the following ACCURATE information. Don't just glance at it, really read it through so that you are informed about what you are taking....
"Trigeminal Neuralgia (SEE INDICATIONS AND USAGE) Initial: On the first day, either 100 mg b.i.d. for tablets or XR tablets, or 1/2 teaspoon q.i.d. for suspension, for a total daily dose of 200 mg. This daily dose may be increased by up to 200 mg/day using increments of 100 mg every 12 hours for tablets or XR tablets, or 50 mg (1/2 teaspoon) q.i.d. for suspension, only as needed to achieve freedom from pain. Do not exceed 1200 mg daily. Maintenance: Control of pain can be maintained in most patients with 400-800 mg daily. However, some patients may be maintained on as little as 200 mg daily, while others may require as much as 1200 mg daily. At least once every 3 months throughout the treatment period, attempts should be made to reduce the dose to the minimum effective level or even to discontinue the drug."
Don't just assume your doctors or pharmacists are on top of everything...mistakes happen. There is some misinformation in some of the replies posted here, so I encourage everyone to read the link.
Rosinka, TN as you know is ever changing and so you'll find a myriad of doses and med combos because there is not ONE magic med or dose that works for everyone....
800 mg of Tegretol CR is what worked for me for the longest time...(200mg tablets, 3xday) I have gone up as high as 1600mg but my pain was med resistant at the time. I hope you have a doctor or neurologist who is able to help guide you with your med(s) giving you direction on how to increase your med, suggest new meds etc... Hope you find relief soon, Mimi
I take 200 mg three times a day but now have been having dizziness for two months. I thought it was vertigo but I saw a post that said it was the tegratol . Anyone else have this horrible dizziness ?