Thanks will keep you posted.. think make mistake what happens if I take 700mg not 600mg and got back on track tomorrow.
What do you mean your close to me too.
Thanks
Yea try not to mess it up. Iāve been taking half pills at times for the right dosage. Like one, then half, then one. Do you have nausea with it? Iām soooo nauseous and no appetite. Iām in Lindenhurst. I see youāre form Huntington.
No so far no bad side effects just drozie and appetite low - so I am not sure if I took 3 pills or 2 this am - will take 2 afternoon and 2 night that will could be 600mg or 700mg maybe 700 not sure and will be on track tomorrow. I have read it can takes 2 weeks to work. Have Doc appt Friday
Yes we are close
Iām guessing your pills are 100mg each? Mine are 200mg each.
It is so sad to see a lot of you having to get back on Tegretol after the MVD surgery.
Personally, I would have a discussion directly with your Surgeon , not the neurologist and see first hand what he had been able to accomplish with untangling those vessels away from the Nerve. Maybe it wasnāt a complete sucess. Find out what he has to say.
With good results, the MVD surgery is designed to get those vessels away from compressing the nerve and with that, eliminating the pain once and for all.
After this is accomplished, more often than not, there is no need for getting back on the Tegretol and the Doctor will have you, very slowly wean off the pills.
My case which was very complex and the 6 years I had the disease, it took my surgeon 91/2 hours to untangle my situation. 7 Teflon pillows were inserted and I was weaned off the Gabapentine.
Yes it will take time for the headaches and face numbness to disappear but I am no longer dependent on any sorts of meds and have no pain whatsoever.
Please check with your surgeon and see if he had been able to āwith surgeryā get those vessels off the Nerve.
If need, consider a 2nd contrast MRI to get a sense if that nerve is still compromised. Am hoping all of you can resolve the pain without these darn meds. Thereās got to be something going on.
I mean think about it, why have the surgery if your still gonna have pain and be right back to where you were before, dependent on maintence drugs.
My very best BB
I am having MRI this week
Yes 100mg.
Thanks
Mare,
Good for you, make sure itās a āContrast MRIā, the standard wonāt show you what you need to see. BB
mare said:
I am having MRI this week
I believe it is no contrast - i had sinus ct and brain lab protocol scan
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Get on the phone tomorrow and ask to have a full contrast MRI. Itās the only way that the radiologist can determine if you have vessels compressing the nerve. It will be also important for your Surgeon to determine if something is causing a return of pain. I Intend to lean on the surgeon since he or sheās the one most likely to interpret the most recent MRI results alongside the previous surgery and how it looks today. BB
My MRI was no contrast but on the results it says itās better seen I guess on two different films or views of it so guess it canāt be seen in the main MRI view. Iām wondering if I will have another MRI with contrast now just focusing on it. I know initially because of my age and past medical history the neuro was ruling out MS. But found the vessels to be the issue here. And just āsh@t luckā smh.
Sandy said:
OMG I am hoping the tegretol works as good for you as it has for me! It was my life save. My Dr. Has'nt had a case like mine, and is not forth coming with the other drugs you have mentioned. I tried gabapentin early-on, and it did nothing. I am 61, and have had this for almost 9 yrs. Rhizotomy and MVD later (which lasted for 2 yrs) ...won't be having any more surgeries any time soon. I found the time release tegretol to be very helpful to keep me as symptom free as possible.
TEGRITOL IS WORTH LESS. IT WILL DAMAGE YOUR LIVER AND WILL LOWER THE HEMOGLOBINE COUNT IN LONG RUN AND IT WILL NOT WORK ON YOUR PAIN. MY MOTHER HAD TAKEN IT SINCE 27 YEAR AND HAVE THE SAME PROBLEM
MRI still not approved by INS Companay pain getting bad again Dr. adding gabapentin along with carbamazepine.
I have had dizziness, blurred vision and what I call brain swiss cheese on tegretol. My neuro chalks it up to the medication dropping my sodium levels. I was in his office today and he is talking about lessening my dosage and adding neurotin and a higher dose of lyrica.
I just started with the Tegretol and am wondering how long it takes for it to kick in. Since I am a newbie to TN, I don't know how long it will be before I start to feel "human" again. My face is numb right now, no pain behind the ear at the moment. However, I am getting stabs every few hours.
OMG! Sounds like Tegretol has its issues. I am itchy and have a rash on my face. Not there before Tegretolā¦ Also getting break through pain. Just not what i wanted.
Hola. When I take Tegretol, it is an instant relief to my socks of pain in the lower right jaw. At times the pain moves around and i use lidocane.There are other meds that might work better for you if Tegretol doesnāt seem to do it.
@hummingbird as far as Iām aware a skin rash is a serious side effect that should be reported to your dr right away so please do so. Tegretol works pretty well for me until it doesnāt. As if the dose isnāt strong enough anymore and only has been lasting about a week or so. Today I was just increased to 800mg. Please tell your dr.
Thank you for getting back to me. The more information I have the more educated I am. Have a good day!
Sandy said:
Hola. When I take Tegretol, it is an instant relief to my socks of pain in the lower right jaw. At times the pain moves around and i use lidocane.There are other meds that might work better for you if Tegretol doesn't seem to do it.