Does anyone else out there have debilitating dizziness from TN? I've been diagnosed with type 2. The dizziness was one of the first symptoms I had, before starting any medication. Actually, the tegratol helps control the dizziness. I'm only taking 400 mg a day because the side effects are pretty bad, and it's taken me awhile to get up to 400 mg - I'm a medication wimp anyway! I do have jaw, cheek, and inner ear pain, but nowhere near as bad as others I've read about here. Some swelling along the left jawline and cheekbone, and my left eye has a hard time focusing when symptoms are in full swing. So glad to know you all are here! Thanks for listening - take care everyone.
I have had some dizziness and some mild nausea recently. I had not associated it with TN but it makes sense
Hi Lorraine,
I have a hard time focusing my right eye sometimes (TN pain is on right side). I too am a medication wimp and on 400 mg of tegratol a day. When my doctor said to increase to 300 mg, my body went into a full sweat, my heart beat like crazy and I felt like I was falling off of a building. Once that calmed down I was pretty much immobile and like a vegetable for 4 hours. Needless to say, I stayed at my 200mg at a time dose. I am not one to take pills at all . . . until TN of course . . . before the tegritol kicked in I was taking over the maximum dose of tylenol I could take and it was hardly helping.
I don't have dizziness from TN, but I have had it for 4 years on and off; I have only had TN for over 2 months. We have similar TN pains though. Mine are in the lower and upper jaw, cheek and a 24/7 burning in my ear. The burning ear is what disabled me from lying down.
I haven't been told which type of TN I have. My first neurologist was very quick with me, you've got TN, badda, bing, ching, ching and I was out the door. I have to wait 6 months to see another one.
Can you tell me what distinguishes yours to be TN2? I ask because of our similarities.
Take care and I hope you are pain free!
I have dizziness but I assumed it was because of the medication rather than the TN itself, sometimes if I turn my head to loOk at something my body involuntarily fOllows!!!
I think I have more like the TN2 pains although not diagnosed with either specifically, because I have constant pain it doesn’t come in bouts it is there all the time!!!
collette said:
Hi Lorraine,
I have a hard time focusing my right eye sometimes (TN pain is on right side). I too am a medication wimp and on 400 mg of tegratol a day. When my doctor said to increase to 300 mg, my body went into a full sweat, my heart beat like crazy and I felt like I was falling off of a building. Once that calmed down I was pretty much immobile and like a vegetable for 4 hours. Needless to say, I stayed at my 200mg at a time dose. I am not one to take pills at all . . . until TN of course . . . before the tegritol kicked in I was taking over the maximum dose of tylenol I could take and it was hardly helping.
I don’t have dizziness from TN, but I have had it for 4 years on and off; I have only had TN for over 2 months. We have similar TN pains though. Mine are in the lower and upper jaw, cheek and a 24/7 burning in my ear. The burning ear is what disabled me from lying down.I haven’t been told which type of TN I have. My first neurologist was very quick with me, you’ve got TN, badda, bing, ching, ching and I was out the door. I have to wait 6 months to see another one.
Can you tell me what distinguishes yours to be TN2? I ask because of our similarities.
Take care and I hope you are pain free!
I think I have both because I have the stabbing/shooting pains intermittently as well as the constant burning/aching. Do you find any painkillers work for you? I think that is a struggle for everyone. Are you able to sleep? I hope your finding relief from medications.
touie said:
I have dizziness but I assumed it was because of the medication rather than the TN itself, sometimes if I turn my head to loOk at something my body involuntarily fOllows!!!
I think I have more like the TN2 pains although not diagnosed with either specifically, because I have constant pain it doesn't come in bouts it is there all the time!!!
collette said:Hi Lorraine,
I have a hard time focusing my right eye sometimes (TN pain is on right side). I too am a medication wimp and on 400 mg of tegratol a day. When my doctor said to increase to 300 mg, my body went into a full sweat, my heart beat like crazy and I felt like I was falling off of a building. Once that calmed down I was pretty much immobile and like a vegetable for 4 hours. Needless to say, I stayed at my 200mg at a time dose. I am not one to take pills at all . . . until TN of course . . . before the tegritol kicked in I was taking over the maximum dose of tylenol I could take and it was hardly helping.
I don't have dizziness from TN, but I have had it for 4 years on and off; I have only had TN for over 2 months. We have similar TN pains though. Mine are in the lower and upper jaw, cheek and a 24/7 burning in my ear. The burning ear is what disabled me from lying down.I haven't been told which type of TN I have. My first neurologist was very quick with me, you've got TN, badda, bing, ching, ching and I was out the door. I have to wait 6 months to see another one.
Can you tell me what distinguishes yours to be TN2? I ask because of our similarities.
Take care and I hope you are pain free!
Hi Collette,
Like you, I was taking a lot of tylenol before I was diagnosed, I alternated tylenol, then advil, as closely as I could take them. It helped take the edge off my dizziness and weird headedness. I still take tylenol if I need to be out and about, it just makes things more possible. Sorry to hear you've had such a rough time with tegretol! I hope things have improved for you.
Well, I got a random appointment with a neurologist about a week ago, and I'm feeling pretty discouraged. Almost all of the appointment was with the intern, who is only 3 months from being a full fledged neurologist himself. He was very nice, but didn't think I had TN at all, but instead 'silent migraines'. He said I don't have the incredibly painful spasms, so it can't be TN. I told him that's typical of TN 1, but I was diagnosed with TN 2, which has different symptoms. He just shrugged it off. The left side of my face will ache and ache, and I get swelling along my jaw and my cheek - it feels more like a fluid tightness than anything too visible, but sometimes other people can see it. My left eye pulls to that side, and I do get quick shooting pains along my cheek and jaw especially when I go out in the cold, or eat something really cold like ice cream. Anyway, he said to get off tegretol, and try topomax, which is a migraine preventative medication. I did look online and it's used for TN as well, so maybe it'll be good in the long run anyway. I was diagnosed with type 2 because they didn't see any lesions on the MRI, and although I don't suffer with the super painful stabbing pains, I have enough weird symptoms on the left side of my face and head, including the dizziness and inner ear pain along with what I mentioned above, that the doctor decided after ruling so many other things out, this type 2 is probably what I have. I've been off work for a year now, and it's hard to not get discouraged. Hopefully, this topomax will work better with less side effects than tegretol.
I hope you're having a pain free day! Take care - Lorraine
collette said:
I think I have both because I have the stabbing/shooting pains intermittently as well as the constant burning/aching. Do you find any painkillers work for you? I think that is a struggle for everyone. Are you able to sleep? I hope your finding relief from medications.
touie said:I have dizziness but I assumed it was because of the medication rather than the TN itself, sometimes if I turn my head to loOk at something my body involuntarily fOllows!!!
I think I have more like the TN2 pains although not diagnosed with either specifically, because I have constant pain it doesn't come in bouts it is there all the time!!!
collette said:Hi Lorraine,
I have a hard time focusing my right eye sometimes (TN pain is on right side). I too am a medication wimp and on 400 mg of tegratol a day. When my doctor said to increase to 300 mg, my body went into a full sweat, my heart beat like crazy and I felt like I was falling off of a building. Once that calmed down I was pretty much immobile and like a vegetable for 4 hours. Needless to say, I stayed at my 200mg at a time dose. I am not one to take pills at all . . . until TN of course . . . before the tegritol kicked in I was taking over the maximum dose of tylenol I could take and it was hardly helping.
I don't have dizziness from TN, but I have had it for 4 years on and off; I have only had TN for over 2 months. We have similar TN pains though. Mine are in the lower and upper jaw, cheek and a 24/7 burning in my ear. The burning ear is what disabled me from lying down.I haven't been told which type of TN I have. My first neurologist was very quick with me, you've got TN, badda, bing, ching, ching and I was out the door. I have to wait 6 months to see another one.
Can you tell me what distinguishes yours to be TN2? I ask because of our similarities.
Take care and I hope you are pain free!
Hi Touie,
Sorry to hear you have pain all the time - I hope you'll soon have some relief. Are you on tegritol yet, or I guess you'd be waiting for a diagnosis before they'll prescribe it... Now I'm getting off tegritol and starting on topomax, which is supposed to work on both preventing migraines and tn. If you can get some xanax, I found even a very small dose (half of a .25 mg pill) would really help with the dizziness, before I was on any of the tn medications. Not sure why, but I've read of others on this site that it helped them out with pain as well. Of course the tylenol/advil sandwich helped for awhile too! Wishing you pain free days - Lorraine
touie said:
I have dizziness but I assumed it was because of the medication rather than the TN itself, sometimes if I turn my head to loOk at something my body involuntarily fOllows!!!
I think I have more like the TN2 pains although not diagnosed with either specifically, because I have constant pain it doesn't come in bouts it is there all the time!!!
collette said:Hi Lorraine,
I have a hard time focusing my right eye sometimes (TN pain is on right side). I too am a medication wimp and on 400 mg of tegratol a day. When my doctor said to increase to 300 mg, my body went into a full sweat, my heart beat like crazy and I felt like I was falling off of a building. Once that calmed down I was pretty much immobile and like a vegetable for 4 hours. Needless to say, I stayed at my 200mg at a time dose. I am not one to take pills at all . . . until TN of course . . . before the tegritol kicked in I was taking over the maximum dose of tylenol I could take and it was hardly helping.
I don't have dizziness from TN, but I have had it for 4 years on and off; I have only had TN for over 2 months. We have similar TN pains though. Mine are in the lower and upper jaw, cheek and a 24/7 burning in my ear. The burning ear is what disabled me from lying down.I haven't been told which type of TN I have. My first neurologist was very quick with me, you've got TN, badda, bing, ching, ching and I was out the door. I have to wait 6 months to see another one.
Can you tell me what distinguishes yours to be TN2? I ask because of our similarities.
Take care and I hope you are pain free!
I’m going to go back to the doctors next week at the moment I am on just 10mg of amitriptyline which takes the edge off it and and getting through 120mg of codeine a day, although the doctor said TN the last time I went I think she thought it more likely that I would develop shingles, so will have a proper chat about it next time 
I’ve worked out my dizziness the medication lowers your blood pressure and mine is already low! I measured it as 88/47 while watching tv at the weekend!!!
Lorraine said:
Hi Touie,
Sorry to hear you have pain all the time - I hope you’ll soon have some relief. Are you on tegritol yet, or I guess you’d be waiting for a diagnosis before they’ll prescribe it… Now I’m getting off tegritol and starting on topomax, which is supposed to work on both preventing migraines and tn. If you can get some xanax, I found even a very small dose (half of a .25 mg pill) would really help with the dizziness, before I was on any of the tn medications. Not sure why, but I’ve read of others on this site that it helped them out with pain as well. Of course the tylenol/advil sandwich helped for awhile too! Wishing you pain free days - Lorraine
touie said:I have dizziness but I assumed it was because of the medication rather than the TN itself, sometimes if I turn my head to loOk at something my body involuntarily fOllows!!!
I think I have more like the TN2 pains although not diagnosed with either specifically, because I have constant pain it doesn’t come in bouts it is there all the time!!!
collette said:Hi Lorraine,
I have a hard time focusing my right eye sometimes (TN pain is on right side). I too am a medication wimp and on 400 mg of tegratol a day. When my doctor said to increase to 300 mg, my body went into a full sweat, my heart beat like crazy and I felt like I was falling off of a building. Once that calmed down I was pretty much immobile and like a vegetable for 4 hours. Needless to say, I stayed at my 200mg at a time dose. I am not one to take pills at all . . . until TN of course . . . before the tegritol kicked in I was taking over the maximum dose of tylenol I could take and it was hardly helping.
I don’t have dizziness from TN, but I have had it for 4 years on and off; I have only had TN for over 2 months. We have similar TN pains though. Mine are in the lower and upper jaw, cheek and a 24/7 burning in my ear. The burning ear is what disabled me from lying down.I haven’t been told which type of TN I have. My first neurologist was very quick with me, you’ve got TN, badda, bing, ching, ching and I was out the door. I have to wait 6 months to see another one.
Can you tell me what distinguishes yours to be TN2? I ask because of our similarities.
Take care and I hope you are pain free!
Hi, Lorraine,
The dizzyness that I’ve encountered has been due to medications. Neurontin is the least in the side effect of dizzyness. And, since botox injections for chronic migraine began, I’ve been able to titrate down on the meds seven days after the injections. And, I have to begin titrating up again at week four or five. I get almost for weeks of milder tn pain and migraine is just one or two per month compared to the 14+ before botox. I know botox cannot work foe everyone, but if you’re being treated for migraine now, you might be a good candidate for the injections. This tn I experience came after a three day killer migraine back in 2002. I’ve treated both migraine and tn since that time. It’s nice to have more windows of time that are low or no pain. It is sad that it’s not a forever deal (no complaing here, just saying:-). Hopefully, I pray a cure will surface in our lifetime. The sooner the better!! Take care, dear.
Dizziness was one of my main symptoms. I am not having it as much lately. I don't know if it is the meds alone or changes in my diet, too. (Prediabetic). Since they think mine is caused by overall inflammation, diet changes may have helped, but, then, it could be just the meds or dumb luck. It's hard to know. I know I don't miss it. I hope you can find some relief for your pain and your dizziness. It is hard to navigate when you feel that way. Sometimes it was/is impossible to do so.
At one point my mother (TN patient) was so dizzy she couldnt even sit up for days. She was on 1200 mg of Tegretol. Thank God we were able to control the dizziness by spacing out her doses and decreasing her tegretol intake but no swelling. Check with your doctor, it might be an allergic reaction to Tegretol in which case he could put u on something else. But don't worry. Dizziness is 100% normal.
Thanks Lynda, booklass, and Asmara for your responses. It's good to know others out there have similar symptoms. Tonight the left side of my face is aching so much, and I wanted to get out for a walk today, but just couldn't manage it with the dizzies. I know it's worse lately because I'm now completely off tegritol as of today, and barely started on topomax. Good gravy, that stuff makes me thtupid!! Oh well, I'm hoping it will be a big help once it kicks in within the next few days. Take care everyone!