head pain

[humming4u]

hi you all, i've only been on this forum for about a week.it amazes me, the kindness, concern,the wisdom,humor,and so much more!truly wonderful to read and witness.I thought it time to ask about my most troubling issue.I am a 51 year old , married for 31 years, mother of three wonderful sons 30,28 and 18.my history is fibromyalgia for 12 years,mananaged well intil two and a half years ago
when one day awoke with terriable face pain, now i call it head pain,never do i call it a headache,i just don't feel that headache, explains it.I have been to a couple of neros, first one, with first MRI, said areas of concern,and with my history,mom had MS,symptoms, tingles running down from head to toes, favor right side, but travel some, the head pain, cog issues,tremors though slight.6 months later 2ond MRI, same, no change, spinal=clear, sent to MS specialist, says no to ms,that fibro is just really bad. have tried neuriton,and topomax (topamax) and fentenol (sp?)patches,last two made me very sick, and very mental!!, lots of pt for TMJ and myfacial release therapy, little helped.seeing a chriopractor now and waiting for a magical releif ! I
my pcp now supports me for my pain with tramodol, fioricet,flexeral,zanac, three times a day, lunesta at night......end of history except I forgot to add Fatigue with a captiol F.
does anyone here have the sort of pain I seem to have, its so very bad, meds only dim it enough so i can fuction.I am  feeling little hope,and a sence of something lurking?
tell me anything that you judge helpful, and i thank for you any words you share
                                                                          Cathy

[Rena705]

Hi Cathy...you have been so supportive of me and I really haven't had a chance to speak to you!  I am so sorry and would like to take the opportunity to welcome you to the best forum available!  You are right, the people here are second to none and have the biggest hearts available.

You had mentioned to me about the head pain before and I wanted to tell you that my head pain is attributed to Paratrigeminal Neuralgia.  The symptoms are a severe ice pick type pain that gets me in my right temple and my left eye droops (ptosis) and my pupil gets smaller (miosis).  I have been having this since Oct 2006 but was diagnosed in Feb. 2007.  I have had IV Solumedrol twice and weaning prednisone twice.  

I was diagnosed in 1993 with MS via MRI and Lumbar Puncture.  I have been in remission since then.  I started to get ill in July 2007 with severe muscle spasms at night in my legs, pain in my hands which carried on until Sept 2007 when I had an MRI of my spine and pelvis which came back negative.  In November I began having severe vertical double vision which lasted 10 days and on the 11th day I was able to see my old neurologist who finally ordered a brain MRI (I hadn't had one since 1993).  It came back as positive for lesions indicative of MS of course...I had already been diagnosed with MS!

So  I have a new neurologist and she doesn't believe that my symptoms are related to MS either but they don't know what the problem is.  They are now planning on sending me for accupuncture for the chronic pain in my feet and legs and I would imagine the ice pick pain in my head.  So, I don't drive, I have poor balance, I have a hard time speaking (actually I usually look rather inebriated without the rum on my breath)  tee hee, I am nauseated most of the time now, I still have the ice pick pain and the drooping eye has never left since last February!

What I would like to know is if they have looked at the possibility of trigeminal neuralgia in your case?  I don't know that much about it but apparently the pain is triggered when you touch your face, brush your teeth and it is EXCRUTIATING!  I have spoken to a few people that want to have all their teeth pulled when it strikes just so the pain will go away (it wouldn't help but when you are in that much pain I guess you grasp for anything don't we?)  Have you tried accupuncture?  I am the biggest skeptic in time but I have a dentist that is learning it and I had an attack in the chair last month and I automatically put my hand up to my temple but he told me to push on a spot in my jaw instead...IT WORKED!  It only help for a short while but it was enough relief so that he could complete my dental work.

I am really glad that you have stuck around and again I apologize for not getting back to you.  I have an important appointment with my g.p. on Wednesday so I am trying to get things in order and my mind can't be in two places...just don't work that way! ha ha

Looking forward to hearing from you  and keep in touch ok?!

Lots of Hugs,

Rena705

[Quixotic1]

What a nice name!  Welcome, though I've seen you here for several days.  I very much want to answer your post.  Rena gave you a nice intro to possible Trigeminal Neuralgia, and I would like to follow up on it.  If you would answer some questions about your face pain (whcih, by the ay, is known to be some of the most severe pain known).

Where on the face is the pain?

Is it on both sides?

Do you have dreadful stabbing/lightening-like jabs of pain?  How long do they last?

Do you have pain all the time?

Does there seem to be a trigger for the pain,like touching somewhere on your face, lips, tongue, chewing, etc?

If you would answer these questions I could be more specific in talking to you about it.

Tell us more about the big F - Fatigue.  When did it start?

AS far as I know, severe facial pain is not a common part of Fibro.  Nor are White Matter Lesions, thoughthey can be seen in a 51 year old.

I'll be looking for your answers.

Quix (local, unoffical MD. I just try to help with answers and interpreting medical stuff)

[humming4u]

first of all, thank you,I had hoped you'd find me.let me try to answer your questions.let me also tell you my answers have appeared to amuse  and have been dismissed in the past.shoulders have been shrugged, smirks not restricted.
anyway...
where is pain? when it began i thought it was just my face,eyes and under, so i was treated for sinisus for 6 months,and have a x-ray finally,it was fine.i guess now its more head pain, deep,but behind my eyes, in temples,and in jaw near ears.
both sides? yes,favors, or stronger on right.
not stabbing/lightening pain, throbbing,i feel like its like a light house light,..lights, dims,lights dims.
nearly constant,settles some with meds
triggers? chewing difficut food,cold drinks, icecream,weather changes, before the rain,its terrible,  homones?week before period is really bad,then it eases some, cold wind hurts
my fatigue, well, i've been use to a constant one for all the years with my fibro, bt when this head pain started so did this attack of, again,my word pictures,feels as if a heavy blanket just falls over me, covers me, weighs me down,i have to rest,not sleep, just stop
and i lay very still, and wait,I'll recover mostly and be good for a good while,the longer my day the harder i fall by evening.I've avoided so many events n the last year i can hardly remember what my normal was.but my husband does, hes pleaded with a doctor or two.   when i was in nursing they called me  mighty mary(mary my legal name), my sons..

well they called me little nazi, and road runner,oh, i'm pretty short by the way.
this was harder then i thought it would be, my tears won't stop falling,i feel so sad for me and my family sometimes.
i'm a wonderful encourager,with my partnership with God,i can do a lot of good .i'm thankful for that,i wish i could comfort myself sometimes.as you can see Rena has been so dear to me too. good place, this here, thank you, and i can pray for your concerns too if you ever want me too.      Cathy or humming4u(in summer if nothing else i have those sweet little tiny birds to wait for, and be thrilled when they visit)

[humming4u]

yes, i thought of and so did others, of  tigeminal neuralgia. but doctors said no, and i kinda knew it too, after researching it.i don;t have the shooting/stabbing type pain.its plenty bad enough though.
i'm getting ready to think about trying anything, sounds like you are too.
when the doc said possiable/proable MS, i said okay,better then a brain tumor!! a reason why, not just a dx to us huh?others storys,others daily,lifelong struggles, have my heart so full, and words just want to go to each and everyone..that would keep one buzy, and i still have a few more things i need to do.i just bought a kneeling bench,i think i'm giong to use it out in prayers anyway. a special one for you tonight, for your battle, and in thanksgivng for you and Quix.
I can look and act like i need a rum! take care new friend,cathy

[Quixotic1]

Well, In My Not So Humble Opinion, I'm not at all sure that what you are describing is not Trigeminal Neuralgia.  Remember, I was but a lowly pediatrician in my former life, but I know lots of stuff.  There is a form of Atypical TN which does not have the typical lightening stabs of pain and is characterized by near constant, duller pain.  

If this is a form of TN and it is bilateral, then the most likely diagnosis for your neurologic problems is, indeed, MS.  Bilateral TN occurs in the VAST majority of the time only in MS.

One of the most helpful sites I have ever been to regarding TN is Facial Pain Associates, which is a comprehensive site for people with all types of facial pain, including the other possibility for you which is Neuropathic Facial Pain.  Neuropathic pain in the cranial nerves (The Trigeminal nerve is the 5th cranial nerve) is especially common in  MS.

I think you should go to this site and read everything they have on TN.  Also, about halfway down the page is a link to take a diagnostic questionaire.  I did it for you making up some of your answers to the questions.  I said you did not have stabbing pain.  I ran it twice from what you have told us here and I said yes and no to the "Do you have MS?" question   Based on the answers I gave (which could well be wrong) the diagnosis both times was Trigeminal Neuralgia Type II (atypical).  You should take the questionaire and answer the question of MS both ways.  

This site also has a forum where you could bounce your experience off of others and a resource for finding experts in facial pain that could give you a better answer about TN.

It is an interesting problem.  If it is TN then you have a good likelihood of having MS.  If you have MS this pain is most likely TN.  So, since this is your most troubling issue, I think you should go to:

http://www.fpa-support.org

Click on "About Facial Pain and TN" on the left.  On that new page you will see lots of links which I recommend you explore.  You will also see the "Diagnostic Questionaire."  Take the test and see what it says.  You might even want to join their forum and present your case.  Either way you HAVE to come back here to tell us what you learned and cuz we're better!

I really hope this helps.  If need be, and it looks like you do have TN we will get info and literature to give to your doctors.  It may well help in your diagnosis overall.

Quix - Purveyor of Fine Information

[humming4u]

I thank you, my husband thanks you. you have given me a lot to do, and a lot to know.
tonight i'm weary,and waited awhile to take my meds so that i could have some peace tonight and smile with and at my husband, so I'm playing hurry up and work meds now.I plan to spend tomorrow afternoon looking over all that you asked me to.I'll keep track of how i do in the diagnostic questionaire, and you will be first to know.
I thought i'd tell you about my mother and see what  you think.first of all,my memories are childhood ones i suppose, and i have no one to ask about her, no ones left.
so as far as i know,she was pregnant with me when she got the dx,by the time i was 11-12, she was bedridden.I remember her tremors, her headaches,her incontience.I remember helping her to the bathroom early on, but sometimes we'd sink to the floor because i couldn't hold her up, and a neighbor would have to help, then she became bedridden and i feed and changed her, dad would carry her.by the time i was 13 i could carry her,sometimes bumbing her head on corners though.we had a visiting nurse only every so often my dad frightened some away i think, but i don't know why he was that way.He devoloped melanoma,by the time he was forced to seek treatment it was way to late. My mother  died when I was 15, my father followed 9 months later.I wrongly judged my mother i  think, i thought she just gave up right from the start, but now i'm thinking she had the very worst type, but i can't remember what they call it,just so you know i'v enever  lead my life with fear of MS, intil it was posed to me,i also don't want to think i will follow her path if indeed I do have MS. I know you wouldn't want to be the bearer of bad news, but can you give me reason to feel either way? I might be asking to much of you, just tell me so, and if so i'm sorry,its just that you've given me such sound advice, i want more......God bless you for being so good and kind to me,Cathy

[Quixotic1]

I'll look at all your posts and see what I come up with.  But I do know that the type of MS that a parent has does NOT determine what type a child will have.

Quix