My Journey..so far

General General TN & GPN (Old Site)
1

Hi Guys, My name is Jana..

I decided to add my story. hopefully one of you have some suggestions, or anything.

I appreciate being part of this support group.

I need some enlightening.:)

My Headaches started about 10 years ago..I was at work, and I started experiencing some very weird sharp pains in the side and back of my head...then, a sharp stabbing burning pain in my eye brow... so intense, that i sat there and actually drooled on my desk.

After the episode, it felt like I had a swimming cap on my head, so tight, and it was totally distracting and painful. I left from work, and napped.

That seemed to break the cycle, but then, after only a few hours, it returned.

It came to the point that my only reprieve from pain is napping,or in the morning... I can actually go up to a couple hours before I have to start the pill popping pain management.

Sometimes when the pain is so intense, I would sit in front of my computer at work with a melting ice bag on my head for relief. It would sit there until it was completely melted. That was the only thing that helped.

I've been sent to 3 different neurologist, with no improvements.

lots of anti seizure meds, and I developed a facial tic as a side affect from all these pills. still no relief, just a fatter , depressed, hurting person now.

Finally my doctor wanted me to go to a pain clinic..hesitantly I did, so, I did.. I got radio wave type treatments.

Did nothing but cause my eye lid to drop as a side affect from the cortisone shots that i had to also get..

so, finally I said to my doctor. cant you KILL this nerve??? what about Botox?? I need something to work here, I'm losing my mind. He agreed it was time for Botox.. so, that brings us to now... I'm coming up on my third treatment... But since I have started this treatment, Ive noticed the pain is starting to shoot across to my other brow now. WTH.... what next...what else. I'm hanging in here, but I'm starting to feel like a pill popper and a whiner and depressed.. I also feel a warming sensation across my head when these headaches and sharp pains are about to erupt..... anyway ..this is me in a nut shell. Thanks for allowing me into this group, Im glad I have a forum to vent. :)

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Mmm : “I’m glad I have a forum to vent. :)” . You will feel better after you have done so , letting off all the frustration and anguish . We understand !

3

Jana , what a difficult time you have had and no let up in sight. I would be miserable too! If venting help please feel free to do so whenever you wish. Scott and Ben started these groups for rare illnesses to allow sufferers to connect and care for one another.

I do hope you eventually gain some relief from the Botox very soon.

4

i am concerned about why they gave you cortisone shots, because it can cause skin atrophy. i have scar tissue and the docs do not use cortisone,especially by your eyes.botox wont kill the nerve. do you have a diagnos and what med are you taking. speak to red our guru on this topic. he is on the road i think but he will answer.

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Hi Jana

My meds have brought pain to a tolerable level, except for the occasional breakthrough pain. Before I found the right meds, my best times were in bed, looking straight up at the ceiling. If I moved my head to the right or left, it was painful. Eating, talking, shaving, teeth brushing, sometimes walking and a host of other activities were miserable events.Great life eh?

And to those who don't get it,

Raise one or both of your arms (making a fist is OK, peace sign is preferable if your feeling overwhelmed with loving kindness) Look them in eye and with a stern voice repeat:

I am a member of Living with TN.

I have a right to pop pills.

I have a right to whine.

I have a right to be depressed.

And if you can't deal with this (fill in your own expletive deleted)

Welcome Jana

SFBill

6

thank you :)



Jackie said:

Jana , what a difficult time you have had and no let up in sight. I would be miserable too! If venting help please feel free to do so whenever you wish. Scott and Ben started these groups for rare illnesses to allow sufferers to connect and care for one another.

I do hope you eventually gain some relief from the Botox very soon.
7


thanks for your words of encouragement.


SF Bill said:

Hi Jana

My meds have brought pain to a tolerable level, except for the occasional breakthrough pain. Before I found the right meds, my best times were in bed, looking straight up at the ceiling. If I moved my head to the right or left, it was painful. Eating, talking, shaving, teeth brushing, sometimes walking and a host of other activities were miserable events.Great life eh?

And to those who don't get it,

Raise one or both of your arms (making a fist is OK, peace sign is preferable if your feeling overwhelmed with loving kindness) Look them in eye and with a stern voice repeat:

I am a member of Living with TN.

I have a right to pop pills.

I have a right to whine.

I have a right to be depressed.

And if you can't deal with this (fill in your own expletive deleted)

Welcome Jana

SFBill

8

they gave me the shots during the radio wave treatments.. they did inform me that the cortisone would actually leave a divot in the area, due to scarring. it didn"t do that, it made my eye lid drop a bit now... I notice it, but family says not noticable. :(

elaine48 said:

i am concerned about why they gave you cortisone shots, because it can cause skin atrophy. i have scar tissue and the docs do not use cortisone,especially by your eyes.botox wont kill the nerve. do you have a diagnos and what med are you taking. speak to red our guru on this topic. he is on the road i think but he will answer.

9

What sort of radio "wave" treatments are you talking about? I know of no controlled randomized trials which demonstrate the efficacy of any technique of either radio wave or laser illumination in trigeminal pain.

10

I went to a pain clinic here and the treatments were done with some sort of electric current?? geez I forget exactly what the called it.. .. it was temporarily deaden the nerve.... sorry.

and right now, I use topically... when real bad Lidocaine, and i take 1/2 of a Vicodin as needed for pain, as I have other head ache issues in 2 different areas of my head. I work, and I cannot be on anything stronger. so, I deal with it.

approx 9/10 years ago, when all this first manifested, they had me on neurontin, topomax, and some others, I have forgotten.. they were all anti seizure meds,.. did nothing but make me a zombie, developed a facial tic, gain weight and make me depressed. but.... head pains were, and are still there... and another nuerologist told me I was basically full of shit. and it was all in my head... which I found that odd to say.. LOL I told him.. Hey big shot.. your fired. anyway.. thanks for commenting. maybe I can actually get some info about this. :) Jana

11

Jana, your former neurologist needed to be reported to the State Board of Medical Examiners and barred from practice, not just fired by one patient willing to stand up for herself. I think it's a pity that such actions are so rarely taken, particularly in the field of chronic pain.

One of the threads I've been pursuing for the past year or so is an attempt to challenge and eliminate the entire axis of the American Psychiatric Association's Diagnostic and Statistical Manual that is concerned with so-called "somatiform pain disorder" and its equally imaginary cousin "conversion disorder". But one bit of good news, if you haven't heard before: last summer the Medical Advisory Board of the TN Association published a short note disclaiming the use of the term "atypical facial pain" with the implication that it represents a psychosomatic disorder. They stood up and stated unequivocally that there IS NO SUCH THING as facial pain generated from psychological conflict. Rare courage from people not known for challenging orthodoxy.

Keep on truckin',

Red