Hi, glad to be here again--so confused

[LyndaT]

Hi,
I am so glad to be back again. I didn't know what was going on, so was so confused the past few months.

The trigeminal neuralgia I have had the past 3 years approximately has gotten much worse. It has become definitely bilateral and the neurologist no longer argues about that. This weekend, the pain has become excruciating, and it has been almost continual. The neurologist called me back yesterday and doubled my Topamax from 200 mg. to 400 mg. a day. The pain in the back of my right side of my neck goes with this, blurry eye feeling, etc. I feel terrible. Anyway, I have entered into a new phase of this disorder.... and I don't like it.

[joy]

When I have had pain on my opposite side, I don't like it either. So far (holding my breath), it has turned out to be a cracked tooth. YEAH!!! Resulting in a lot of expense for root canal and crown. But menieres and sounds in two ears sometimes and one all the time plus pain in jaw,neck, ear up side of head on one side and PN everywhere is ENOUGH. Let us know how you handle the doubling of topomax, if side effects subside and if it works for you. Maybe it will.

[ToTs11]

Hi Lynda,
I sympathize, I've been bilateral for almost 5 years now.
Although my pain is not constant one after the other, I do have pain every day, no remission yet.
Have you thought about any surgery?
I haven't used Topamax, so cant comment on that, but have you tried Trileptal? I find this med cuts the level of the pain down, although in my case it doesn't overall control it, it does make life a bit easier.

I hope your feeling better soon.

Tracy.

[irishchick]

Lynda, so sorry to hear that you have bilateral TN. As Tracy asked, have you researched or thought about surgical options?

I had the MVD March 2005, and I am off all meds for TN. Still get the odd twinge, more if I am stressed, but very tolerable compared to before the surgery.
It is certainly not for everyone, but I don't regret it for a moment.

I hope you will have better days soon- sending healing vibes your way.

Karen

[LyndaT]

I have had the intense TN pain for weeks now. I have had this start again after I couldn't move my neck one night, I thought it was like a stroke type of event. The neurologist disregarded that. Last Thursday evening, I was speaking in completely jumbled speech in front of several people. It is something I have done before, but not in a year or more. I had a nerve block on my leg the next day for another problem. I mentioned the jumbled speech to my neurologist and he thought most definitely I had a TIA.

I did more research and it seems that some rare cases of trigeminal neuralgia can be interrelated with TIA and carotid arteries, etc. I am interested if anyone has had any issues like that. I had some tests today. Just seems strange to me that this long period of unrelenting TN pain began with symptoms of a stroke.

[ella138]

Hi Linda
When I first read your post, the first thing I thought was there is more going on here than just TN. Some of the things you mention dont sound typically like TN. The neck thing inparticular. The other thing I have never heard of is TN and stroke in the same sentence. So I thought I would try to find something and sure enough I did.

I found this on the cnn web site (http://www.cnn.com/HEALTH/library/DS/00446.html). There was one line under causes that says one of the less common causes of TN can be a stroke affecting the lower part of your brain, where the trigeminal nerve enters your central nervous system. I think you and your neurologist have a lot of investigation to do to get you the help you need, not only for pain management, but for preventative help related to stroke.

Here is a paragraph taken from page 45 of Striking Back:
Brain injuries can also cause pain that acts like TN. If the thalamus is injured, for example, it can give people a false sensation of pain even when there is no reason for it in the area that seems to hurt. No matter where pain originates, it's always perceived in the brain. So if the pain processing parts of the brain are injured by trauma or stroke, they can malfunction and create a host of problems.

So maybe, you had a TIA first (that can easily go undetected) and your TN is a side effect which was caused by the trauma to the brain? :confused:
Just a thought. I hope you get some answers very soon.

[Spacey Casey]

sorry about your worsening pain Linda.

Can your neuro give you a strong pain medication to take as you need it for the really drastic pain? My neuro gives me methadone that I take only as needed since it is used with great precaution.

I also take baclofen with Neurontin that helps me too. hang in there!