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Trigeminal neuralgia

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    #16
    I am so sorry to reading all of your stories!!!
    This kind of pain is just horrible.
    For some reason I keep trying to come down from the gabapentin (I think I just refuse to accept that I need to be taking meds four times a day, permanently.) but the intense pain and accompanying migraine just comes back with a lag time of a day or two. And then I remember why I need the drugs.
    It is awful.
    just awful.
    Sometimes like a shock, sometimes like a knife and sometimes like a knitting needle is stuck in my face or ear. (and this is with meds, between doses)
    I live in fear it will a)never go away b) get much worse. Both are very real possibilities.

    How does everybody else deal with this disease?!?!?

    (I'm not dealing well, I am afraid. I am often sad and feel isolated and hopeless. I keep myself cheerful and positive for my children and my job, but I think if things get worse I might need some extra support from a therapist or something. I just feel awful having to always take drugs just to live halfway normally....)
    Dawn, let me know what the Lyrica is like, ok?
    mommyRN tell me what the doctor has in store for you.
    @seal
    The headaches started about 1 year after my right eye ball got "stuck" in the upper right hand corner of my eye. At that time, I saw Neuro and Opthamologist and was in the hospital for 3 days (it took 6 months for my eye to correct itself, I'm thinking this was my first MS flare).
    Holy moly!
    Your eye was "stuck"?!?! For months?!?!
    Ick. big ick.
    *undiagnosed and just hangin' in there somehow*

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      #17
      lynnepynne-
      I always appreciate your feedback. I will certainly let you know how my appointment goes. If I leave only with one thing tomorrow, I want it to be something to calm this nerve pain!
      I'm a mother, a wife, a nurse, and a graduate student... I guess it COULD be stress!

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        #18
        @mommyrn.....yes I had the same electric shocks in my head and scalp! It was also so painful brushing my hair! Brought tears to my eyes in fact! That pain has now gone, but as I said, it went to my right ear and never went away. All my problems are on the right side btw. I was reading that TN is %60 more frequent on the right side....hmmmm! These boards have brought me some peace of mind in knowing that I am not the only one with this weird pain in my head. I feel like people think I'm nuts when I say 'pain in my head'. They think it's like a headache and it's not at all. I do hope they sort you out at the neuro!!

        @lynne...thank you and I will I know how you feel suffering with feeling isolated. I also know there are support groups out there. If you need someone to talk to definately see a counsellor. It can help immensely just talking to someone.
        Dx RRMS 1999
        On Rebif

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          #19
          @Lynne....sorry don't know how to send a private message! Are you american living in Germany? I'm american living in the UK since 2001....
          Dx RRMS 1999
          On Rebif

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            #20
            Originally posted by Dawnrnuk72 View Post
            @Lynne....sorry don't know how to send a private message! Are you american living in Germany? I'm american living in the UK since 2001....
            There is no private message option on MSWorld. If the member you wish to contact has their email address in their Profile, you can contact them that way.

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              #21
              Neuro today

              Well, had my appt today with the neuro. The best part of it was he NEVER asked if I was anxious or stressed and never blamed the "busy mom syndrome" for my problems.

              Beyond that I think I told him the more important things. I know I forgot a lot, but I think I said enough to get him looking into what's going on.

              He did order a few more lab tests. Ferritin (can't remember what for), lyme disease- which he doesn't think it is but wants to make sure to rule out, and anti- SSA/SSB antibodies (sjogren's).

              A week from tomorrow I will have an EEG with VEP, then a recheck with him, and if nothing has been found I will have an LP. Can anyone tell me what any of these tests are like, or what to expect?

              Anyway he is thinking MS, wants to rule out anything viral, and mentioned chronic fatigue syndrome. I looked up CFS before and didn't think my symptoms fit but I don't know much about it.

              So that's what I know for now. I didn't ask about any kind of treatments for my curent symptoms, I forgot I'm pretty sure I can do this for another week til I see him again.
              I'm a mother, a wife, a nurse, and a graduate student... I guess it COULD be stress!

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                #22
                Neck pain was the first painful symptom I experienced. It still lingers. On days when my neck hurts, the face symptoms are worse too. I will occasionally use moist heat and it helps temporarily.
                I'm a mother, a wife, a nurse, and a graduate student... I guess it COULD be stress!

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                  #23
                  @mommyrn.....glad your appt went well have you had an mri yet? I never had any of the tests you've mentioned. I just had the mri straight away and there were plenty of lesions to make a diagnosis (I was in the US at the time). I hope they get it solved soon for you....
                  Dx RRMS 1999
                  On Rebif

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                    #24
                    Originally posted by mommyRN View Post
                    Neck pain was the first painful symptom I experienced. It still lingers. On days when my neck hurts, the face symptoms are worse too. I will occasionally use moist heat and it helps temporarily.
                    If the pain is in your throat area, rather than the neck neck, it might be the 9th cranial nerve (which is paired with the 5th). Its called glossopharyngeal neuralgia. I was researching that because I also have tongue pain and a quick lightning blot of pain near the carotid area, so I''m not sure if that's what I have. I think what I have is just an extension of the TN.

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                      #25
                      @ dawn- I had an MRI back in October and my brain was clear. I was sent for a CT scan with angiogram because "something" in the back of my head looked like a possible aneurysm. It wasn't- thank goodness- but they were never really clear what it was.

                      The report says it could possibly be a "tortuous ectatic artery" or something like that. But they didn't seem concerned either way. From what I can tell, I did not have a cervical or spinal MRI and I wonder if that's somewhere they should be looking.

                      The testing I am having, from what I have found out, is to measure my brain's reaction to visual stimuli and see if there are interruptions in pulse transmissions (meaning lesions somewhere along the way?). Or at least that's how I'm interpreting it.

                      @ starry- Thankfully my neck pain is not in the throat area, it runs from the base of my skull into the trapezius area. I am also thankful it is not constantly painful, but when it is... OUCH! I'm sorry you have tongue and carotid pain, that would be scary awful!
                      I'm a mother, a wife, a nurse, and a graduate student... I guess it COULD be stress!

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                        #26
                        @mommyrn......ok so mri was clear, thats good, but still doesn't explain your symptoms. Maybe they will mri your spine. I never had one so I have nooo idea if I have lesions there. Guess it doesn't matter. I have wondered though. Well I hope they get a better picture once your other tests have been done
                        Dx RRMS 1999
                        On Rebif

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                          #27
                          So even though I'm well-controlled on gaba 900 3x/day, my face is acting up again today. Not horribly painful, just a little ache and I can feel the nerve rumbling a bit. Its snowing today and it seems every time it does, the TN gets worse. I actually suspect its related to humidity rather than cold, because its been colder than this and I haven't had as many problems. Has anyone else noticed anything like this?

                          I just really hate it when it starts to ache and twinge a bit because I just get terrified its going to turn into full-blown, shocky, rocking back and forth in a fetal position horror.

                          I'm wondering if we could get a dedicated area for TN discussion, or maybe there really aren't enough of us to justify our own spot? Does anyone know of a good TN board? I'd really like to learn more about it from a nontechnical side, as in people who actually have it.

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