Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

I started taking carm. 100mgs a day on 09/07/11.  Returned to N. after having increased meds. and not finding relief.  By then my pain was taking on new forms.  I told him I still experienced most of my pain as scalp burning, crushing, pressure, sometimes like needles or darts drilling on the right side.  Would come in cycles and episodes lasting minutes and or hours for days before I'd feel some type of relief.  Same triggers including any chewing into foods, caffeine, wine, sugary juices, too much salt, etc.  Pain can be tooth related and always causes head pain somewhere.  I admitted that I feel slight pain on my lips, right cheek, and right ear and above areas.  The pain is unbearable for long periods of time and then after sleep and  a couple of klonapin I may be able to relax and watch tv but that I really have no life.  I spend much time with my head on my pillow and with hot pads all around.  I told him that I could not handle wearing my eye glasses and that the pain on the nose, to right ear, up the right side of my head was the worst.  I use magnifying glasses when I need to read.  Which  robs me of my reading and certainly narrows my job search options.  Once I mentioned that I had begun to notice some pain on the left side of my head.  Dull throbbing or some burning slightly during bad eating days or too much trying to use glasses he seemed confused and doesn't quite know what he is dealing with.  He increased carb. to 300mgs per day and after 1 1.2 mos. of walking into walls, spilling food, not knowing where I was in conversation he decided to start decreasing carb. and tapering in topalmax.  I'm nauseated all the time, and  completely exhausted.  I am not sure what I have.  He has done no tests other than the standard, he has no past medical history on me, or my family.  I'm as confused as ever.  He keeps telling my this is very common.  My brain nerves in the cranial area are over taxed from stress and that I'll get better soon.  Ofcourse he has suggested the phys. care and such.  When I ask him how he knows I'll be better and fully funcional again he just states that this sort of thing happens all the time and it just takes times to get everything calmed down.  He states he does not know for sure that I have T.N. but allows that I have facial pain and episodic head pain.  I'm lost and do not feel as if I have any control over what to do in order to get well or at least to know what might be happening to me.  I need dental work and other tests but do not have insurance.  Anyway, I'm moving to Cal. next week, will have to get on a plane in painful condition. Start over trying to get to the bottom of this. 

Any advice or similar stories to share will help.  I can not work and yet I need to.  Want my energy and drive back.  Thanks for listening. 

 

 

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Comment by Richard A. "Red" Lawhern on February 4, 2012 at 11:20am

Your symptoms appear similar to those of  (a) a  mixture of Type I and Type II trigeminal neuralgia, (B) generalized trigeminal neuropathic pain (c) post-herpetic neuralgia due to Shingles, (d) trigeminal pain associated with some other root systemic cause such as an auto-immune disorder like Lupus, or fibromyalgia.  Have you had any head traumas, dental work, or surgery within the few weeks immediately before your pain first emerged? Have you been checked for Lupus?  Have you been checked for MS and do you have other symptoms in your body generally?

In my not so humble opinion, your doctor seems to be implying that your pain may be associated with some form of panic disorder.  That's a bad initial assumption as it predisposes the physician to sit on his tail and dither rather than looking actively for medical root causes.

Regards, Red

Comment by kimburlee on February 4, 2012 at 6:21am

Hi Debbie,

 

Standard test?   Have you had MRI?  I don't see it mentioned. I am dislexic.  If you have not had MRI, I would demand one immediately, wherever you are. 

Comment by Min on February 1, 2012 at 9:17pm

Hi Debbie, Maybe when you get to California you can look up one of those doctors Red listed (IN the recommend a doctor review posing).You can get a second opinion so to speak. A different perspective from a different doctor is always good.  I am hoping then you can get a med or combination of meds that work well for you!! Best wishes. Min

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