Jolie, I am so sorry. Doctors can be such idiots. All we want is a reason, an answer so we can feel better and they make it worse. I'm so sorry you are going through this. How long have you had TN? I will be praying for you.
I have only had mine for 6 months, which already seems like a fricking lifetime. I spend most of my time in bed and unfortuantely I cannot sleep through it b/c the pain is almost always at a 10 with flares that I would put at a 20. Unfortunately I am allergic to opiods so there is no pain relief for me unless I go back to the tegratol which causes severe problems but someitmes I have no choice, I am hoping to find something for relief or at least to tone it down with this next doc.
Oh that's awful. I'm so sorry you can't take any medications. I am only about 6 weeks into mine, and it feels like a lifetime. I am in my second week of Neurontin, but I can take Percocet too. I can't take antiinflammatories though. Is your family doctor supportive of you?
Has any doctor tried you on Amitriptyline or Nortriptyline? Baclofen? Lyrica? Particularly with ATN, there are other alternatives to Tegretol.
Regards, Red
That's good to know Richard. I will keep that in mind.
I have been taking generic for Keppra for 2 mos. It has helped more than anything else. Although after a month you have to go up on dosage because pain starts coming back. I am now taking 750 3x day and lately I have started having pain in my teeth again. I find the only thing to do is give into the meds and sleep. Sleep is the only thing that helps me. But I would like to have a life again and not be a zombie. Judith
the problem is, is that a MRI doesn't usually show a blood vessel pressing on the Trigeminal Nerve. They have to go into the skull/brain to see that for sure.
Stevie R. said:
I also have this intense pain in the top and on the back of my skull...along with the other areas of course. For me it's pressure and burning...wich feels like I've been whacked over the head basically. How would you describe yours D ?
sorry for this bs you're going through with this neuro. Makes me so mad...been there more then one times. Shake it off and try to keep thinking for yourself and stay positive as much as you can.
Also: He was looking at my MRI and did not even mention the blood vessel that was touching the trigeminal nerve!
I didn't know this can be seen on a MRI..Isn't this a clear sign? Red, would you maybe shine a little of your light on this for me ??? I'm going to see my neuro next week..could use some input. Thank you so much!!!
SO sorry you had to put up with an insensitive big head D :(.
A doctor should not TELL you, you dont have TN or ATN without fully hearing you out as that is the main form of diagnosis...its not always something easily seen, he should have just shut up and let you explain as much as you could without saying 'NO you dont have this..gimmie lots of money and have a nerve block JUST IN CASE'...UGH!!! the irritation!!
Im not saying nerve blocks dont help some people but if you already had diagnostic evidence that would strongly support TN and he chose to simply disregard it then forget him! You need someone who will. The fact that he would rather diagnose you by his nerve block theory rather than pay attention as much as he good to your current test findings and work from them proves how money hungry some people are. Hopefully, if you can get a new Dr things will run a little smoother. Sorry for all the stress and annoyance your going through!! x
One reservation, Mangamel: if a nerve block reduces face pain for more than two or three days, then many neurologists would regard that result as a confirmation for the diagnosis of trigeminal neuralgia. As you note, however, reported outcomes with nerve block are rather inconsistent. Not all people are helped by them, and among those who are, a series of blocks may need to be administered over a period of a few weeks.
Regards, Red
Teacher, I'm not confident that your observation about "usually" is accurate. In fact it is quite common for vascular compressions to be found in corpses of people who never had face pain. And the loose statistic that I've heard used is that when high resolution MRI is done in trigeminal neuralgia patients followed by MVD, in about 10% of the cases, a compression is found during the exploratory phase of the operation, that didn't show up in the pre-op imagery.
Word to the wise, for whatever it's worth.
Regards, Red
Judith, I’ve had trigeminal neuralgia for 24 years and in all that time the doctors have never offered any test to measure the pain. I know you can’t measure pain being it is subjective, but I feel certain other bodily signals would demonstrate the body is in deep distress (heart rate, pulse increase, body temperature,perspiration, etc.) corresponding with the pain logged in a journal. Perhaps then doctors would believe us.
Fortunately my pain is controlled with medication gabapentin, tramadol and venlaxafine. But if I decrease my gabapentin by 300mg I have chronic pain consisting of sharp zings like a bee sting, deep throbbing pain that literally makes me nauseous and feel like I will pass out if I don’t sit down, and tingling, crawling, creepy feeling all over all 3 branches of my numb face.
Try explaining that to a doc, they don’t get it. My diagnosis says Trigeminal Neuralgia, but they never mention what kind because I don’t think they know. My doctor wants me to go to a pain specialist for an injection. Sounds good but when I read doctor reviews patients state they are rude, do not want to listen to patients, do not want to discuss the procedure, they just want to inject. If you don’t do what they ask they literally ask you to leave the office and don’t come back. They may be neurologist specializing as pain specialist but that doesn’t mean they know what they are doing. Many docs are used to working with drug seeking people and docs have become hardened unfortunately and develop that attitude. As much as I would like to be free of medication and regain my sharp mind, I will not gamble with an injection that could cause more damage to the nerve. I’ve been through it all Gamma Knife, failed MVD, a zillion meds to find the right combination, sent from doc to doc until I finally gave up. So I would be very much interested in an EEG, or some test that could measure action of nerve. Proof that what I am saying is true. Oh my I’m getting worked up. I don’t come to this site often because it is so upsetting to me. My life pretty much ended as I knew it when I felt that first zing on my forehead 24 years a go. I can remember where I was and what I was doing.
If you really have tn , there is a cure . The micro vascular decompression surgery. My dad had it really bad . To the point of not being able to eat or touch his face at all. He got the surgery about 6 months ago and all is well !! The neurologist is in the business of prescribing pills , see a nero surgeon . You’ve suffered long enough