It got complicated

1

Hi all,

It started with ear pain, or was it face pain…or the headaches? I remember the ice pick GN pain, and the TN strikes starting around the same time. I had an MVD in January of 2013 on the left side where they found three blood vessels compressing the trigeminal nerve (one artery and two veins.) At that time I was told that the pain on my right side was probably because of the left TN and it would go away after the MVD fixed the left side. It didn’t. I had a right side MVD in April, 2013. They found two blood vessels compressing the trigeminal nerve (one artery and one vein). I hoped all would be better after those two surgeries, and initially I thought they were (and even reported in a discussion here that they were) but that wasn’t the end of the story.

I still have some face pain, bilaterally, awful, oh yes, but not as bad as before the surgeries. I have (diagnosed) bilateral GN pain, and (diagnosed) bilateral ON, and now the pain is sometimes in my throat as well. I think my head is still healing from having two MVDs in one year, I get scalp pains and pains around the scars. I also have fibro and arthritis so some days it is difficult to get up!

I am on gabapentin, cymbalta, lexapro, hydrocodone, and a fentanyl patch. I have a tens unit, lydocaine patches, and a gabapentin compound cream (as well as some other meds that I am on).

At least I have an absolutely wonderful pain doctor, he is compassionate and he listens. I get frequent nerve blocks for the bilateral ON and TN.

I feel like there is so much going on at once and wonder if, since I was unlucky enough to have bilateral compressed trigeminal nerves perhaps could I have other compressions causing issues…and isn’t the way to find out via surgery? If so which side do we start with? Left or right? GN or ON? Feels like a whack-a-mole game. One doctor said that I have “funky architecture”.

So there is a bit of my story, I have been on here a lot since this all started, but mostly reading. The stories people tell, the ideas they have, the support they show has helped me, especially on nights like tonight when my left ear is in severe pain and I am also getting TN strikes and just when I think things might be calming down I get the ice pick in the right ear…then my teeth…i do turn to this site. Thank you, all, for sharing your stores, for supporting each other on here, and helping me!

Lili

2

Hi Lili-

How are you doing now? I recently joined this site and group. I hope you are doing better.

I am having many similar symptoms.

Jennifer

3

Unfortunately about the same. I was recently approved for disability.

What is happening with you?

4

I also have TN bilateral and ON on left side. Have had MVD on left side in 2007. So nice to write that and not have to explain what it is. Ther are people who understand. Tryed GK on right side in 2009. Then Gangliarcyomy of Occipital and reconstruction from prior MVD in 2911. Helped for a while but it has returned. I am 66 so have multiple other prob;ems that go with age. Have run the gamit of pills and other treatments. Presently on Vimpat-very expensive, but does seem to work 300mg to 450 mg a day. A great Dr. calls me his poster child when he gets me out of pain for a while. All other Drs. failed to listen. Do you really think I am imagining this. ON is back with a vengence. TN is not as bad except for my ear being ripped off,and the electric shocks in my temple. Is this like Chinese water torture? I hate summer and A/C blowing on my face and winter with the wind blowing. Look silly with a scarf around my head every time I go out, even in a movie theater. Why are some places so cold. My first time here and looking forward to hints from others who actually understand. If there is no blood shooting out-people do not understand the pain. Thank you for letting me join in with this group.

5

Galli,

It IS nice to “meet” people who understand! I have been having a lot of pain in my left temple and left eye lately, these and the ears are where it all started.

I am right there with you regarding the doctors that don’t listen, I recently was at a top ranked Chicago hospital and the neurologist said there was nothing he could do for me, he didn’t even offer meds. It seems like doctors want to treat conditions that fit in medical check boxes and if you have something more complicated they don’t want to deal with you. They don’t want to do the research or work.

I wonder how doctors and hospitals are graded, I am thinking that there is no way for them to get graded down for refusing to see complicated cases. I once heard that some top hospitals do that, turn away patients that don’t seem fixable so they can keep their ranking.

I am tired of being in pain. I am tired of being nauseous. I am tired of being tired. I wish I could drive. I wish I could go places and do things other than go to the doctor. I wish I had enough money for my medical bills. I wish I had someone that I could talk to about these things…I sort of do on this site, which is helpful. I wish I knew why my right arm sometimes freezes…a new development that I am going to ask the doctor about next week, among other things. I can’t work anymore because of the pain in my face, ears, head, throat, and fibro pain, but I need my right arm to sell stuff on eBay to try and make ends meet, I really hope it is nothing serious wrong with my arm. I am scared and worried.

Thanks for listening!

6

Wow- we have a lot in common -, haven't met any one else with this ear thing.I can get it while I am driving and just go nuts- then the other ear may or not start. I am TN bilateral and ON on leftside. Had the nerve cut.--but it is coming back. I think they all think they found a nice home because all the pain comes back after MVN, GN and all the other letter that we seem to use. Kind of like having that secret decoder ring and only us TN's can understand. You are on a lot of meds- lots! I take Vimpat -It is rather new and expensive, but it seems to control things. I think I will have to start sleeping standing on my head. The only part of my head that does not excite the pain. Can't have the pillow touch the back of my head or my ears. Use a recliner a lot, but really like the bed. I hate it then people say -"but you look great " I also have other problems that do not show. Since there is not an axe sticking out of my head-they just do not understand the pain. Don't know about opening my scull again just for a look see-that sounds a little dangeous

That is why we are here- to help each other -I really know what those needles in the back of my head are like-and that ear pain is one of the worst. We are not alone. We may not know each other-but we understand each other. We get medical advise from the MD's but love and understanding here. Keep putting on foot in front of the other and keep going. We will help each other through this journey. Maybe that axe in the head is a good idea! nothing else is helping. Just kidding!

7

We do have a lot in common! Except I can’t drive, well, I can but I don’t, I am on too many meds to trust myself behind the wheel, and you never know when I will get a pain strike.

I have a new neurologist, who is also a DO. I have had good luck with osteopaths before and I like his approach so far so I am optimistic.

I have been having trouble with my fibromyalgia lately, which I had before the TN, ON, GN alphabet soup started. I have also been having a lot of face and head pains, some say worse with the weather system Chicago has lately.

I have been extremely tired lately, every day, probably a combination of being in pain and taking all these meds, including the narcotics which make you tired. It is frustrating, feels like not much of a life, in pain and tired all the time.

Most people don’t understand it but I use ice packs on my head. I guess it numbs my head and/or distracts my brain from the TN and ON (and so forth). I have been using ice packs for years now, I can handle a lot of cold. Regardless of whether it makes sense or not it helps me so I continue to use them. Some ice packs are better than others, the mueller ones are the best, they dont leak or soak through.

I get what you mean when you say other people don’t understand, a great many medical conditions aren’t visible from the outside, do they understand arthritis? How about appendicitis? Migrane? Kidney stones? We have s much pain so often for years that we know how to put on a happy face for short periods of time while in pain, that I get but don’t get, it is good for us to try and interact with the world and the world doesn’t appreciate cranky people so we smile as much as we can…but we aren’t being true to our situation because it hurts, it hurts to smile!

Good to hear from you, I hooe to hear from you agan!