I hope you're having a pain free day and are doing well.
I am new to this forum and came across your comments which I am grateful for. Thank you for sharing specific details of your TN experience. Most of what you described has been what I've experienced as well. I've been suffering with TN for 15 years now and it wasn't until about a year ago was when my husband shared an observation he had. He noticed that during the two weeks prior to menstruation, the TN would flare up really bad. It also flares up when I am stressed, angry, frustrated or super fatigued. So we both were guessing it has something to do with blood pressure. I've shared it with doctors but they never seem to have any answers, but I get it. Conventional medical doctors only know what they were trained which is to prescribe medication or perform surgery. Rarely do they diagnose correctly or even know the cause. That's why I was thrilled to have stumbled onto this site because you and many others have confirmed or enlightened me as to the cause of TN and Tinnitus.
Take care,
Liz
Marcy said:
Vicki....I found out if I am stooping over to pick something up or if I am working in the garden I have to sit on a garden scooter, I tend to chew my food on the left side of my mouth, if I over do eating hard food such as pizza crust or the almond Wal-Mart ganola bars (these I am sorry to say are out of this world and I can not get enough of them) any of these get my nerve to act up....I guess I need to take some stock out on oatmeal.
Vicki Dvorak said:
You're not off track at all, Marcy. Thanks for your comment. :) I think (at least I hope) my blood pressure is pretty low most of the time, but you never know what's going to set TN off, do you?
Marcy said:
Hi Vicki.....I have had TN for about three years and just recently have experienced a swishing sound in the left ear....I believe it is related to TN and has to do with your blood presure also ...... I think IF you can get your BP down it would help alot dealing with this TN I keep finding out new things....my last pain experience I noticed I was using my right hand slicing a onion and with the pressure of doing so brought on the pain, I was walking down stairs and grabed the hand rail to tightly and that brought on the pain.....just another thing to be aware of ...... sorry if I got off track
It's very strange to read someone's post that's so familiar with the things I have. They are not very common to have all at once. Allthough this post is from years ago, thank you for sharing Scott. My dizzyness is diagnosed as Vestibular Migraine and sometimes comes in 'attacks' that can last one to three hours. When my TN worsens, my tinitus does also. I have pulsatile tinitus (PT) started at the same time when TN started, about 5 years ago. Like you I have had buzzing in my ears of and on as long I can remember (well, that's not true, it started 33 years ago, at 18). The PT came with the TN, before I took any meds (so they are not the cause).
I hope you and everyone reading this are doing well, greets,
Ellis.
Scott said:
I have both and I know there are others on this site as well. I have had ringing/buzzing in my ears of and on as long as I can remember. Since I got TN the ringing/buzzing has gotten worse and sometimes kicks into high gear where that is about all I can hear. when that happens I get partial hearing loss in one ear (opposite side from my tn) that can last for days and get very dizzy and have to lay down and pass out that last for 4 hours or so.
The doctors thought mine might be meniere's disease but ruled that out by giving me triamterene which is a diuretic. They tried it to see if the fluid in my ear was to much and needed drained. My understanding is that the fluid can go in the wrong direction of spinning and the triamterene will help if that is the case and not meniere's. thankfully that is the case with me so far. I still get some ringing and buzzing but not nearly as intense. Once in a while i will get the pulsating but not as often or very severe. If I stop the triamterene for a few days the ringing will intensify.
Scott
Ellis said:
Hello Scott,
It's very strange to read someone's post that's so familiar with the things I have. They are not very common to have all at once. Allthough this post is from years ago, thank you for sharing Scott. My dizzyness is diagnosed as Vestibular Migraine and sometimes comes in 'attacks' that can last one to three hours. When my TN worsens, my tinitus does also. I have pulsatile tinitus (PT) started at the same time when TN started, about 5 years ago. Like you I have had buzzing in my ears of and on as long I can remember (well, that's not true, it started 33 years ago, at 18). The PT came with the TN, before I took any meds (so they are not the cause).
I hope you and everyone reading this are doing well, greets,
Ellis.
Scott said:
I have both and I know there are others on this site as well. I have had ringing/buzzing in my ears of and on as long as I can remember. Since I got TN the ringing/buzzing has gotten worse and sometimes kicks into high gear where that is about all I can hear. when that happens I get partial hearing loss in one ear (opposite side from my tn) that can last for days and get very dizzy and have to lay down and pass out that last for 4 hours or so.
Hi Vicki! This is also a new symptom for me that I am putting down to either TN or the medication I take for it. While I am TN pain free right now I started getting very bad headaches and facial twitching and spams. Along with this came ringing in the ear on and off or a deafness that I can only explain like that on a plane before the ear pops. It doesn’t pop though, it just rings, goes to this deafness and then back to normal. No pain, just weird really. I always fear it’s going to be followed by pain because my TN feels deep in the ear, teeth and jaws. I’m going to ask my own neurologist about next month. Keep us updated if you find anything out about it.
Kind regards
Suzi
Absolutely I have that problem sometimes My ears feels so much pressure i feel like my inner ear is being crushed and then when i hear noise it makes my inner ear vibrate. Not the same but similar.
At first the doctors thought I had Menieres, but because I didn't respond (at all, not a bit) to Betaserc (a med that increases bloodflow in the middle ear) they ruled that one out. Because of the 'Vestibular Migraine' diagnose, I'm now on a Beta-blocker. It does help some with the vertigo attacks, but it doesn't help with the TN/PT. A diuretic is interesting. I thought about that one before, because I felt my face is somewhat swollen in times I have more problems with my face and ears. Does your TN lessen while you are using Triamterene, Scott? And did you have any kind of migraine through your life?
Ellis.
Scott said:
Hi Ellis,
The doctors thought mine might be meniere's disease but ruled that out by giving me triamterene which is a diuretic. They tried it to see if the fluid in my ear was to much and needed drained. My understanding is that the fluid can go in the wrong direction of spinning and the triamterene will help if that is the case and not meniere's. thankfully that is the case with me so far. I still get some ringing and buzzing but not nearly as intense. Once in a while i will get the pulsating but not as often or very severe. If I stop the triamterene for a few days the ringing will intensify.
Scott
Ellis said:
Hello Scott,
It's very strange to read someone's post that's so familiar with the things I have. They are not very common to have all at once. Allthough this post is from years ago, thank you for sharing Scott. My dizzyness is diagnosed as Vestibular Migraine and sometimes comes in 'attacks' that can last one to three hours. When my TN worsens, my tinitus does also. I have pulsatile tinitus (PT) started at the same time when TN started, about 5 years ago. Like you I have had buzzing in my ears of and on as long I can remember (well, that's not true, it started 33 years ago, at 18). The PT came with the TN, before I took any meds (so they are not the cause).
I hope you and everyone reading this are doing well, greets,
Ellis.
Scott said:
I have both and I know there are others on this site as well. I have had ringing/buzzing in my ears of and on as long as I can remember. Since I got TN the ringing/buzzing has gotten worse and sometimes kicks into high gear where that is about all I can hear. when that happens I get partial hearing loss in one ear (opposite side from my tn) that can last for days and get very dizzy and have to lay down and pass out that last for 4 hours or so.
I also have this problem. Before my TN i had classic tinnitus symptoms but recent it has changed. Sometimes before a serious TN attack i feel this weird pressure in one ear and a whooshing sound. I think because all these nerves are connected and they have all gone out of whack.
Not really sure but you are definitely not alone in this.
The Triamterene does not seem to affect the TN attacks either way. sometimes i do have ringing in my ears but nothing compared to what it was. The ringing now is more of an annoying thing than anything else. I have never had any migraines and very seldom have had a headache.
Scott Ellis said:
Thank you so much for your reply Scott,
At first the doctors thought I had Menieres, but because I didn't respond (at all, not a bit) to Betaserc (a med that increases bloodflow in the middle ear) they ruled that one out. Because of the 'Vestibular Migraine' diagnose, I'm now on a Beta-blocker. It does help some with the vertigo attacks, but it doesn't help with the TN/PT. A diuretic is interesting. I thought about that one before, because I felt my face is somewhat swollen in times I have more problems with my face and ears. Does your TN lessen while you are using Triamterene, Scott? And did you have any kind of migraine through your life?
Ellis.
Scott said:
Hi Ellis,
The doctors thought mine might be meniere's disease but ruled that out by giving me triamterene which is a diuretic. They tried it to see if the fluid in my ear was to much and needed drained. My understanding is that the fluid can go in the wrong direction of spinning and the triamterene will help if that is the case and not meniere's. thankfully that is the case with me so far. I still get some ringing and buzzing but not nearly as intense. Once in a while i will get the pulsating but not as often or very severe. If I stop the triamterene for a few days the ringing will intensify.
Scott
Ellis said:
Hello Scott,
It's very strange to read someone's post that's so familiar with the things I have. They are not very common to have all at once. Allthough this post is from years ago, thank you for sharing Scott. My dizzyness is diagnosed as Vestibular Migraine and sometimes comes in 'attacks' that can last one to three hours. When my TN worsens, my tinitus does also. I have pulsatile tinitus (PT) started at the same time when TN started, about 5 years ago. Like you I have had buzzing in my ears of and on as long I can remember (well, that's not true, it started 33 years ago, at 18). The PT came with the TN, before I took any meds (so they are not the cause).
I hope you and everyone reading this are doing well, greets,
Ellis.
Scott said:
I have both and I know there are others on this site as well. I have had ringing/buzzing in my ears of and on as long as I can remember. Since I got TN the ringing/buzzing has gotten worse and sometimes kicks into high gear where that is about all I can hear. when that happens I get partial hearing loss in one ear (opposite side from my tn) that can last for days and get very dizzy and have to lay down and pass out that last for 4 hours or so.