Questions to veteran sufferers

So I was just wondering about a couple things and was hoping to get some insight into what other people have encountered...

First, does anyone else constantly hear their heartbeat in their ear? I have the constant swish swish of my heart beat. I keep forgetting to talk to my neuro about it. It's become worse in the last couple weeks and I am assuming it's from the compression?

Second, how do you know if you are in remission or not? Being on this stupid medicine, how do you know when it's over? If I dare miss one pill, I am reminded quickly to get my butt up and take it. I would LOVE to be rid of this medicine, even for just a couple months, but wasn't sure how you know when you are not feeling the pain anymore when you are doped up and numb?

Lastly, am I the only one that "forgets" how bad it really is and tends to start wondering if it's just "all in my head". I start questioning how I baby my face in the cold and wind and wonder if I am making a mountain out of a molehill. Then I miss a dose, or run in the cold, or bite down on something sugary and I am reminded how bad it is. Then it starts all over. It's really emotionally exhausting. I have been praying for 2 weeks about whether to get the MVD done and I just keep wondering if it's really THAT bad. But to be honest, I will do anything to get rid of the medicine! (Neurontin 1200mg)

Thanks so much for your insight, as I am hoping I am not the only one with these questions. Also, if you have any advice about getting the MVD, I would so appreciate it. I have exhausted all resources from the info page and the group. Thanks again!

Just a note to say....Neurontin was terrible for me! It kind of comotosed me, or in other words, made me act and feel like a vegetable. The worse part of it was that it caused me to forget the other coping mechanisms that did work. The result would be another bout worse than the one before it. It also caused me to vomit after about the third day. I switched over to Tradimol (Ultram) for nerve pain, Ibuprofen 800 for inflamation and Flexeril for muscle relaxant, Norco for breakthrough pain. I feel more "normal", and would never ever go back to neurontin. If you have any questions, feel free to contact me. Hope you are feeling better soon. If it helps, you are not alone. Ive posted a few coping tips that do help, such as music, distraction doing something like a craft, ice on your head, etc.

Take care....Melinda

I think your question full of insight and also very normal reactions.

Yes I get the swishing and heartbeat within my ear (there is a subgroup for ear pain) and I have an appt with my GP next week to try to tackle that issue which is way down on my list of health complaints to sort! I empathize, it's very annoying.

I guess the only way to know you are in remission is to stop taking the meds. ABSOLUTELY not recommended to be done without medical help as it can lead to greater health problems if you just stop. I often wonder the same thing? Am I medicated or in remission? I don't care if the pain is at bay, to be honest.

Neurontin, it does not suit everyone the same, I find it the least side effecting med I have taken but we are all very different and I have taken 2700mg previously. I am managed reasonably at 1500mg. We are all different and I feel for you. I have had similar feelings and reactions on other meds:(

You could join the subgroup MVD and ask questions of the members there. I would have to try several medication regimes before I considered an op, I am older than you and in poor health, it would be a big step. Whatever you decide I wish you well and hope you can find some relief from a medication which is kinder to you.

Tina - I'd love to add a few questions for the "vets" if you don't mind. I am newly diagnosed and I am getting bad vibes about the neurologist. How long do you wait before you seek another one? My neuro doesnt beleive in pain medication. Says that if I take pain meds, I wont know if the Tegretol is working. The side effect are bad, and my neuro said on Friday - "you should be past the side effects by now" But I'm not. The attacks of pain are not as many througout the day, but they are still there. Neuro says "you should be past that by now", but I'm not. But if I need pain medicine, then obviously is not - right? My PC gave me percocet so if the attacks are bad, I can at least sleep though them. But there has to be something else I can take along with the Tegretol, right? So he sent me for more bloodwork and now I am waiting to hear back from him, still in agony. This is all so confusing, and I can't scream and cry and grit my teeth through the attacks anymore. I just can't take it. What kind of doctor do I go to now?

Nutmeg, that's a tough one. I guess one who is not deaf to you cause. There is no such thing medically as a "normal " Patient. If the meds are not working for you the dose may need adjusting or the med changing. It took a while for me to find the right neuro and gain relief. I felt bad about the first one I saw, he was just not right for me. Over here in the UK we are given a Dr so it was not an easy task to get to see another. I am so glad I did as she has helped me so much and I just "feel" right with her. She listens.

Thanks everyone for your replies!

Melinda ~ This is my 4th script. I would list them, but my mind isn't working today. This is actually the second time being on Gabapentin. It hasn't been as bad as the first time. I'm not nearly as dizzy. But it is not helping with the pain as much as the Lyrica did. (Lyrica cost me $385/mo so the neuro switched me back to neurontin. ) I am gonna have to call back and see if I can up my dose again. The tegratol had the worse side effects by far for me. I am hoping I don't have to go back on that! The neurontin does give me a brain fog and make me forget things. It also makes me nauseas. So sick of all these meds. I am so ready for some kind of normal!

Jackie ~ Thank you for your advice, I am so glad I am not the only one with the swishing in my ear!

Nutmeg ~ No problem at all! Hijack away! And for what its worth, I would definitely find a different neuro. There is no reason to suffer thru that pain if you don't have to. Telling you that you should already be passed that by now does not help your situation at all. But it does take about 3-4 weeks to get past a lot of the side effects. That is def the worst part of it. My dizziness was so bad my husband said I was walking leaning to one side. I fell down the stairs at one point and there is DEF no driving when you are in that shape! If it is that bad, then maybe your script needs to be adjusted. There are alot of options out there and since we are all made different, I suppose we all need different cocktails of meds to fix the issue. I do hope you find relief soon. :)

Hi Tinah,

Do you have any ringing/buzzing in your ears known as Tinnitus? Well, I have for years. One morning about 8 years ago I woke up with what you're describing--a pulsing "whooshing noise" in my left ear (my "TN pain side" years later) that seemed to be in-sync with my heart rate. It was quite loud and annoying 24/7 and began to effect my work performance--too much noise in my head to concentrate, I couldn't even read for enjoyment. I saw an ENT doctor and after a couple of visits was diagnosed with what's known as "Pulsatile Tinnitus". I was a mess between the regular tinnitus and the newer pulsatile variant. You might want to see an ENT doc about it, but I'd imagine your neurologist could verify that and/or refer you to an ENT doc. PT is painless, but totally obnoxious!

"Running in the cold..." YIKES! I wouldn't even dream of trying that out! May I ask what about the neurontin/gabapentin it is that you dislike so much? Is it mostly how sleepy it can sometimes make us feel, or other side-effects as well? Blessings, Rick

regarding TN1 and MVD -- if it is the lighting shocks you have / I had,,,, TN1 or Classic ---- neurontin made me dizzy, lyrica made me high - so was put on trileptal and in 48 hours the pain was gone - gone - however - I could NOT live more than 10 months on it, had to quit my job, lost my IQ, my personality. I lowered the dosage with doc, and put on lidocaine patches for breakthru pain - and spent many months on here and a couple of other sites researching MVD and anything else that sounded feasable.

I picked Dr.Ken Casey in Michigan and flew out there, he consults by email initially.

He worked under the founder of MVD, does thousands of them - and I've only had 1 week of 5% breakthru pain since Oct 25, 2011! ( got this from an oral surgeon putting me under and jerking my neck around - Oct. 2010)

MVD can work for TN2, but success rates are lower. MVD success rates go down if you have other procedures first.

It was a "1" on a scale of 1-10 for "brain surgery" -- not a cakewalk - but there are much more dangerous brain surgeries.

Not to be taken lightly either - was terrified - came on here soooo many times with worry -- my whole story is somewhere on here - and on MVD boards!

Keep posting and researching - and don't blindly follow doctors -- mine, however nice the neurologist was, wanted me to try a 4th med - and knowing now, that TN is FOREVER, and is progressive, I wanted to nip it in the bud - gonna be 50 soon and must get back to my life! Also found a local support group.

OH gosh, I think that others will say, Go with your gut, on your Neurologist. If you don't like him, move on. You don't owe anyone anything. Just to yourself. Don't ever let a Dr. make you feel anything other than he cares about your pain. Sometimes it will take several Neurologists until you find one that works for you. It seems that everyone has so many different issues. My pain is in a weird place. I get it in my top side of my brain. It feels like it is on fire or being electricuted to death, LOL. I too, have tried about 4 or 5 other meds and have to go back to Tegretol as it helps to stop the attacks. I am about ready to fire my current Neurologist because he is just a smart a#* and I don't like him....I guess there is no miracle cure as others will share. This is a great site to ask questions as many of them have had this disease for years. No, noone is a Dr. of TN, but most have a lot of good info to share. Thinking of you.

yep...had this demon for going on 7 months now; I had several weeks - right after starting on the Trileptal - that I TRULY felt normal! I was thinking it WAS just in my head and I didn't really have this...then I went to NC one week ago for 5 days; the trips on the airplane DID ME IN! I have not had a day without pain since!! I am going back to my neuro on Tuesday and will discuss this with him; he has promise me that he does not intend on me hurting; he has dealt with face pain with numerous patients and understands...this will be my second visit with him; so we will see.

We will stick together Tina! Thanks for putting into words how we all feel at times!

You just wrote everything I think. I don't hear the swish but I've been thinking all of the other thoughts for days. I am set up to do the gamma knife when I call in and say 'it's time". I keep going back and forth with I'm coddling myself to "okay it's time". My game plan with the doc is to increase my meds until I'm pain free. I think I'll be the walking dead before that happens. I'm dizzy and dopey too much of the time now but I feel like the evil orthodontist in my mouth is a non stop terrorist so I keep going up. Sorry I'm no help, but thank you for posting my thoughts.