[ginnybean32]

Well guys I did my best to stay away so I wouldnt hurt myself by typing..I recently had some dental work and my TOS pain went through the roof...always does if I over do...but then my tongue swelled and started dancing on its own. I had lock jaw and couldnt eat or drink because it hurt so bad. I ended up in a psych unit for three days due to the depresssion. because no one understands this disease...I got diagnosed today by an ENT as having triangle neuralgia..(cant spell it). The worst suicide pain in the world its called...and let me tell you if it werent for my kids and my psychiatrist and hubby I would have let myself die...

Ive had this problem with getting numb and mind blowing pain after every time I have work done on the left side. The same side I had my rib out and my LTN decompressed...Now due to all the muscle spasms I am starting to wing again. Its like all that surgery and pain for nothing...They want me to go back to a Neurologist and have more tests..I know it will keep me in this flare as well as incite the TN to act up again. I dont have enough weight on me right now to go through it again. I have to make myself eat but im having a hard time swallowing, and because my doctors think Im more a mental patient right now they are doing nothing..they are waiting for medicines to not interact on me and control this debilitating depression.....so I wait in pain for this to end.

I know I was happy getting off the roller coaster to no drugs..Im sensitive to everything they give me now. Once you go through rehab you are hyper sensitive to all the pain meds...and the one time you need them you cant take them. I will survive I will get through this without depression...at least im trying. Thank god for some of you staying in touch and keeping my chin up...I couldnt see the light at the end of the tunnel but I do now...well a little anyway. Thanks for letting me vent.

[ocgirl]

Ginny,
Is it trigeminal neuralgia?
I'm so sorry this is happening, it must be awful.

One of our forum members, I'm not sure who it was had it I think, and your symptoms are very real.

God bless you as you travel this journey, you are very strong, but this pain must be terrible.

[gibbrn]

Hi Amy,

Nice to see here. Sorry to hear that you're in such pain. We love your rants. Despite the fact that you're in so much pain. I wish you were back here in better shape, however we will take you as you are. As always! Trigeminal neuralgia is known as one of the most painful things you could ever experience.

There is a new Alzheimer's drug that is being used to treat major depressive disorders. It is called namenda. Using it for a depressive disorders is an off service way to use it. This drug has had good use what alzheimers patients. There are some studies that have found that they treat depressive disorders very well. There are also the standard medley of drugs. I myself have just started increasing my Nortriptyline, due to increasing depression myself.

I can certainly relate to the wanting to die. I have had many of these episodes over the last couple of months. However I have not had that horrific pain of the trigeminal neuralgia.

Thank God for your family and the psychiatrist to have kept you with us.

If you need information on the namenda please let me know. I would be more than happy to look it up for you and send you the articles.

So good to talk to again.

Love and hugs,
Victoria

[astern]

Hi Amy!!

How awful - I'm going to go read about this condition - I know nothing about it. But I'm sorry that you are hurting on top of the severe depression. There have been days recently that I have wished I could "check-in and check out" but I have no one to look after my Mom. You are lucky to have a family to look out for (and vice-versa).

I hope a med change will help you. I'll keep you in my prayers.

Anne

[ginnybean32]

I need the support. I dont have dragon anymore not that I could get it to work right!!! Cant talk with kids everywhere. They are the ones I worry about not me...seeing mom go through all this crap. Im just tired after 3yrs. I am blessed I know..kinda hard to see though.

My Rsd has also raised its ugly head and crawling in my hole is not working so Im doing something about it...Waiting until my doctors think Ive waited long enough. I thought staying off the computer would help me. In a way it hurt me. Im isolated during the day, my mom has my dad and his problems plus hers...

The family is tired too and I can tell...but supportive. Since I couldnt and wouldnt eat due to my tongue swellin up and the pain I got dehydrated and I had seizures. So I have a ton of extra stuff now going on making the doctors scratch their heads. Finally one actually touched and examined me and I got hit with it..... this suicide pain dx where you go a week with no sleep...NONE and then dropping from exhaustion. You pray for it to end and it doesn't. Then finally after keeping your hair from touching your face, not wanting to shower cause you know it will set it off , you cant even let your kids kiss that side of your face it finally slows down and you can see light

Thats the only way I can describe it. Some of these meds Im on make my vision blur so I cant read or watch tv not that I can pay attention..I never understood how some of you could go days without sleep. you hear ringing in you ear and your eardrum vibrates, your balance is gone and any minute you think you will fall..that the pain takes over and consumes you...I pray Im not scaring anyone else..but this is my experience and no one elses...I have to do something no matter how much it hurts or I will be consumed....I know the RSD had something to do with this and I remember one of my Neurologists that did an EMG on me said my 5th cranial nerve was slow...that was 2yrs ago...but the dentists always ignored me when I told them I had RSD...I haven't had an attack of RSD in over 6 months.

Im sick of it....just sick....ok enough venting...I pray no one else goes through this and if you have I feel ya now!!!
Its so frustrating...just frustrating. I would love to reconnect with you all..send me your numbers. My computer crashed 6 months ago and I lost them all. I can talk now without pain; for now...better than I can type.

Thanks again so much for your support guys..I miss you all...I'll keep in touch...

Vic- I'll keep the drug in mind but with me having reaction after reaction Im sticking to golden oldies I know have not caused bad problems in me...

Ocgirl- yes it is trigeminal neuralgia its horrible just horrible..

[johannakat]

ginny, i am so sorry...i also do not know about this dx but it sounds very horrible.

(((((ginny))))))

[Jomar]

Hi Ginny, have you checked our TN forum here?
http://neurotalk.psychcentral.com/forumdisplay.php?f=26
They might have some info links or new discussions about treatments there.
Kimmydawn- our forum admin has TN also.

But nerve pain is nerve pain, no matter where it rears it's ugly head.
It sounds like you are between a rock and a hard place with the med sensitivities at the moment.

we have a Depression forum too -
http://neurotalk.psychcentral.com/forumdisplay.php?f=37

[tshadow]

Amy and I talked - I am the one who's tongue swelled up like quasimoto for about 9 months. It had pins and needles, very sensitive and no taste. It was after novocaine. I also had bad pins and needles with marcaine after my scalene block, which I discussed with the doc and he poo-poo'd me off...

As for dental, dentist blamed TOS, neuro TOS doc blamed dentist for hitting nerve root...I got no answers, no relief and no help. Time finally did the trick, as several people here promised it would. But at the time, it was the straw that was about to really send me over the EDGE.

I regularly have pain going up side of face, ear, behind cheek, eye, molar pains, and sometimes tongue still buzzes or lips buzz. A couple of times my entire face has gone numb for about ten minutes. Recently, above my eye, a muscle pulls up.

Do you other TOSers not have this facial pain? I suspect some of us have trigeminal nerve pain included in our TOS, and yes, the pain is very bad, but it's just as bad as the pain that is in my neck right now, and my ankles at this moment...different, but same level...

That's why I needed, and need a change of, major pain meds. That's why I can't sleep for sometimes days on end.

Luckily, it does have an ebb and tide to it, and I'm waiting for a break.

Amy, we all love you here, and when / if you can post, we love your posts!!!

[tshadow]

After reading a lot about TN, and, with the info. my neighbor gave me about her TN which resolved, they all tout the praises of Neurontin.

I have never taken neurontin.

After the Lyrica problem, should I be scared to take Neurontin for weight gain or screwing up the diabetes situation even more? Liver?

Has anyone here really gotten a LOT of relief from Neurontin?

Amy, I wonder if you should try Neurontin on another quick trial basis right away to see if it relieves these horrific symptoms right now.

[DiMarie]

Amy,
My heart just aches for your pain. The pain sucks the strength from you everyday before you even start. I can add you to my prayers, and pray for a medication you can tolerate.

I hate feeling helpless to help others.
Did you happen to try plain Asprin, a coated one maybe? I found sometimes that the simple things like that can offset and help focus.
My hugs and love,
di