Hi, I am still trying to figure out why all of a sudden I have gone into another flare with my TN. I am not sure if the popping a vertbra in my neck set this off or if it was just coincidence or if because the weather is changing here so drastically that -that is what is setting this off. Last winter was my first episode with this and it was horrific and no meds worked for me, but then thankfully summer came and it just dissipated, although over the summer I had a couple of days here and there that I had some low pain issues with it but usually within a day it had resolved, but now all of a sudden four days ago it has come back. It is not as bad as it was last year and I am hoping I never get to that point again but the anxiety of this is definetely back, so does anyone out there find the change in seasons a trigger? Also I am realizing that when I experience the TN I am also suffering from dizziness sometimes to the point of not being able to keep my balance, I don't know if this is typical or usual for TN, so I am interested to know if anyone else experiences this too.
i also feel seasons set mine off most my flares r winter months except this year i have never had a flare in sept and i have been dealing with it for 3 weeks now
I have the same thing. Just a couple of weeks ago, I posted a similar question. The last two years, my TN has gotten considerably worse in Sept. or Oct. Last year it was so bad I was hospitalized for 3days, heavily drugged. This year(3rd year in a row) I am having a bad flare-up again. Usually I start to improve in Jan or Feb as long as I stay warm and stay out of the wind. But I don't think it has to do with the cold at this time of year; it is just in the 60's to 70's. Maybe it has something to do with the barometric pressure. I think I am just going to have to accept the fact that I am worse in the fall and plan accordingly.
I have also been struggling with dizziness; was dx with vertigo last month. But I have alot of pain and pressure in my ear too that may be causing it. Perhaps you should get your ears checked out just to make sure there isn't something else going on there. Hope you can get some relief soon!!!
I have had my ears checked over and over you see my TN is not in my face as much as it is in my ears, so it has felt like I've had an ear ache very deep inside for a very long time, but usually I do not have such dizziness, but this time it is extreme and unfortunately there is nothing wrong with my ears again as usual it is just TN. Anyway, thank you for posting at least I am not alone with some of these symptoms. Thanks
Karen said:
I have the same thing. Just a couple of weeks ago, I posted a similar question. The last two years, my TN has gotten considerably worse in Sept. or Oct. Last year it was so bad I was hospitalized for 3days, heavily drugged. This year(3rd year in a row) I am having a bad flare-up again. Usually I start to improve in Jan or Feb as long as I stay warm and stay out of the wind. But I don't think it has to do with the cold at this time of year; it is just in the 60's to 70's. Maybe it has something to do with the barometric pressure. I think I am just going to have to accept the fact that I am worse in the fall and plan accordingly.
I have also been struggling with dizziness; was dx with vertigo last month. But I have alot of pain and pressure in my ear too that may be causing it. Perhaps you should get your ears checked out just to make sure there isn't something else going on there. Hope you can get some relief soon!!!
I do have dizziness. Do you ever "see stars" from it? If I don't get at least 7 hrs of sleep (and this hardly ever happens), the next day I feel narcoleptic and I blink out for a few seconds and have to get up, move around. Sometimes that's not enough and I have to sleep on my lunch break, then I'm ok. If I can't sleep, I feel like my grasp on consciousness is too loose and I don't trust myself to drive. It's scary. I don't know if it's the meds. My neck has been sore and stiff ever since I had an ear/sinus infection a couple months ago. I think it's related to the blinking out. Neuro appt on Monday, this will be 1st question.
Every season brings a new trigger - cold weather outside, wind, AC in the heat, barometric pressure.
I have the dizzyness as well, but mostly from the meds, not the TN itself. As for weather, I have more issues with humidity, now that its 60 degrees out I have less pain. My allergies have been horrible, and its weird by I think the anti-histamines are actually helping with this, i notice a difference when I take them, my head seems clearer all the way around.
I have dizziness and for the first time in my life have motion sickness I take Bonine at night just so I can sleep when I lay my head flat I get dizzy. I asked my neurologist he said the nerve is pressing on the area of the brain that controls this. I am not sure about season changes this started in March and is still here.
I have dizziness /imbalance as well, true vertigo actually to varying degrees since last November.
For me it is a separate issue we think, at first they thought BPPV and then through testing and eliminating we thought maybe side effect of Tegretol, now after having eng/vng testing 2 weeks ago it showed" right sided caloric weakness". Just waiting to get in with a new ENT as mine left to see what that all means.
Definately get testing done to be sure it is not a separate issue.
(( hugs )) Mimi
Can i ask what is BPPV and eng /vng testing also what is caloric weakness I have never heard of this and do not understand what calories have to do with one side of the head, so could you please explain what all this is you are talking about so that I may be able to talk to my docs about it. I also am not on any drugs so I know mine is not from a drug side effect too. Thanks
Jolie
Mimi said:
I have dizziness /imbalance as well, true vertigo actually to varying degrees since last November. For me it is a separate issue we think, at first they thought BPPV and then through testing and eliminating we thought maybe side effect of Tegretol, now after having eng/vng testing 2 weeks ago it showed" right sided caloric weakness". Just waiting to get in with a new ENT as mine left to see what that all means. Definately get testing done to be sure it is not a separate issue. (( hugs )) Mimi
My TN always seems to act up during the fall and winter months with a few out-breaks during the summer…as far as the dizzyness i get dizzy from the gabapentin that i take…hope that your pain goes away janice
Hi Jolie,
When you have dizziness or vertigo they do tests to try and figure it out.
BPPV is benign paroxysmal positional vertigo. You’ll have to google it for the explanation as I am short on time to reply.
Eng/vng tests are done to check your inner ear system.
I would definately mention to your doctor that you’re experiencing dizziness/imbalance when having TN attack, and see what he/she says.
I’ve never had dizziness from the TN but I’ve had it from the meds.
Sorry this is rushed.
jolie said:
HI Mimi,
Can i ask what is BPPV and eng /vng testing also what is caloric weakness I have never heard of this and do not understand what calories have to do with one side of the head, so could you please explain what all this is you are talking about so that I may be able to talk to my docs about it. I also am not on any drugs so I know mine is not from a drug side effect too. Thanks
Jolie
Mimi said:
I have dizziness /imbalance as well, true vertigo actually to varying degrees since last November. For me it is a separate issue we think, at first they thought BPPV and then through testing and eliminating we thought maybe side effect of Tegretol, now after having eng/vng testing 2 weeks ago it showed" right sided caloric weakness". Just waiting to get in with a new ENT as mine left to see what that all means. Definately get testing done to be sure it is not a separate issue. (( hugs )) Mimi
thanks for responding back and now that you explained what the abbrevations stood for I can now say that I have already been tested for BPPV, although I had never heard it called by the abbreviations so I did not know that -that was what you were talking about. I also had all the tests for my inner ear done, actually I have had every test possible for both ear and balance done and even went through balance therapy which only made things much worse, but I have told all three specialists (ENT's and ENT neuro docs) that I was suffering with severe dizziness and of caurse they did every test possible and the only thing they could find was in the right ear the nerve was damaged by a prescription of cipro I took which left me with what is known as ottoxicity and caused me to become legally deaf in the ear, due to the destruction of the nerve and in the right ear I lost 20% of my hearing due to the same ottoxicity from cipro, at the same time I took the cipro I also hit my head very badly and three days after the head hit and the ottoxicity from the cipro is when my neurlagia, dizziness, and deafness started, so after all of the testing and treatment trials (which all failed) they said that the dizziness was due to the TN. However, when I hit my head I caused C4-C7 vertbras to fracture and compress which caused the discs to slightly bulge and I have had one doctor tell me that all of my neuralgia problems are due to the vertbra compressions and this is just referred pain from the bulging discs, but when I talked with two different neurosurgeons they said that was not possible and refused to fix my neck. In the meantime i have noticed myself that any movement of my right shoulder (up and down) and movement of my head (tilting it to any side or up) will set off severe neuralgia pain so I beleive that it may be due to my neck, that is why I was asking the question to everyone on here to see if others are like me or not. I do have an other appt. with another neurosurgeon on Oct. 4th to see if he believes this could be the problem. Anyway, sorry to go into everything but i felt as though maybe I needed to explain why I was asking this question , but thank you for clearifying what you wrote earlier, I just wish it had been something that I did not already have done, so that I could go back to my docs and say "hey here is something you forgot to test me for, check it out", LOL! but unfortunately, I have had those tests done so nothing new to bring back to docs, oh well, I have hope still with this other doc on Oct. 4th and if it does not go well with him i have an appt. with Cleveland Clinic who after reading my doctor notes that my doc sent them said it is a possiblitiy and would be willing to see me, now I just have to come up with the money to travel to Ohio. Thank you
Mimi said:
Hi Jolie, When you have dizziness or vertigo they do tests to try and figure it out. BPPV is benign paroxysmal positional vertigo. You'll have to google it for the explanation as I am short on time to reply. Eng/vng tests are done to check your inner ear system. I would definately mention to your doctor that you're experiencing dizziness/imbalance when having TN attack, and see what he/she says. I've never had dizziness from the TN but I've had it from the meds. Sorry this is rushed.
jolie said:
HI Mimi,
Can i ask what is BPPV and eng /vng testing also what is caloric weakness I have never heard of this and do not understand what calories have to do with one side of the head, so could you please explain what all this is you are talking about so that I may be able to talk to my docs about it. I also am not on any drugs so I know mine is not from a drug side effect too. Thanks
Jolie
Mimi said:
I have dizziness /imbalance as well, true vertigo actually to varying degrees since last November. For me it is a separate issue we think, at first they thought BPPV and then through testing and eliminating we thought maybe side effect of Tegretol, now after having eng/vng testing 2 weeks ago it showed" right sided caloric weakness". Just waiting to get in with a new ENT as mine left to see what that all means. Definately get testing done to be sure it is not a separate issue. (( hugs )) Mimi
Jolie, thanks for going into detail, sorry I couldn’t the other day, I have been struggling last few weeks, pain and dizzy wise and it was a bad day!
It helps to share with each other so we can learn from each other.
I’ve heard about ototoxity, I worried because after my dizziness they gave me cipro for my ear infection and shortly after I developed Hyperacusis, a sensitivity to tones, it was horrid. Thankfully that has healed.
I certainly hope you get some answers and help, I truly understand what your going through.
Best of luck at your upcoming appointment!!!
Mimi
Cold wind kills my face, expecially my left cheek. I wear a ski mask outside in the winter/fall. Wind bothers my eyes all year long. I wear goggles when necessary. I look like an idiot but I don't care.
yes, I have heard that in the fall and spring, there are usually flare-ups. I have experienced this myself, and actually noticed that there is almost a remission of the symptoms during the summer. Many people experience more of a flare-up during the fall. I have had this disease for 4 years so it is becoming a pattern. However, many others tested with the same flare-up times of year as mine and then a few maybe different. It makes it hard to know what treatment works the best too, with these flare-ups.
I have found vitamin B12 injections help to completely relieve my pain after a few weeks and all symptoms in a month. During the summer, I only needed one a week, if any. during the fall I need 2 injections a week.