bellgirl Posted October 21, 2012 Report Share Posted October 21, 2012 Unfortunately, I've just been diagnosed with trigeminal neuralgia...it is extremely painful to eat, sing, talk, and I also have invisalign for my loose teeth, so this is a major problem. I went for 5 days with just naproxen, but after seeing my PCP she has put me on 3 meds, a topical NSAID, Vicodin, and Flexeril. Has anyone else had this? I just pray it goes away, because other treatments seem pretty invasive. Prayers please!! Thanks in advance for your input... Quote Link to comment Share on other sites More sharing options...
arizona girl Posted October 21, 2012 Report Share Posted October 21, 2012 So sorry to hear this and that your in pain. I've never had it. I did get a severe painful spasm in my neck after they put my pheresis catheter in. I was put on flexeril and it went away about a week later. It does make you tired though. Vicodin scares the crap out of me because so many are misusing it.Hope it gets better soon. Quote Link to comment Share on other sites More sharing options...
lillybits Posted October 21, 2012 Report Share Posted October 21, 2012 that is miserable. mine seems to wax and wayne. cold weather seems to make mine worse. i try to eat and dring everything luke warm to room tempurature . soft foods are my friends or atleast things that are easy to swallow whole. everyone is scared to give me anything that lowers my bp so i dont get any pain killers at all. they tried the tricyclic antidepressants that help with nerve pain but they always make me psyco. ha ha i feel real bad for my husband and kids when they try a new one on me. I know the other options are insanely invasive. burning off nerves and whatnot in the center of your brain has waaay too many complications for me to consider even tho most days I want to chop my own head off!I hope they find a relief for you soon! Quote Link to comment Share on other sites More sharing options...
Jan Posted October 21, 2012 Report Share Posted October 21, 2012 I have a friend who just got Botox for this after years of trying other treatments and she is now pain free. Quote Link to comment Share on other sites More sharing options...
lumpchp Posted October 21, 2012 Report Share Posted October 21, 2012 Hi, sorry your dealing with this. I was wondering if you had any issues or changes in vision? I work for an ophthalmologist, and have seen many patients with this who complain of light sensitivity, watery eyes, and eye pain and strain with reading, and eye movement. Sometimes this causes damage, and we don't want that to happen :-) if you notice any issues in that area, you should have an exam with a good ophthalmologist... Hope it goes away soon! Quote Link to comment Share on other sites More sharing options...
issie Posted October 21, 2012 Report Share Posted October 21, 2012 So sorry, Kim . . .and you were doing so well before. We never know when something else is going to pop up with us. Hang In There! Hoping you get relief very soon.Issie Quote Link to comment Share on other sites More sharing options...
corina Posted October 22, 2012 Report Share Posted October 22, 2012 I'm sorry Kim, I can't really answer your question just thought to send you healing thoughts. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted October 22, 2012 Author Report Share Posted October 22, 2012 Thank you all...I thought they would put me on neurontin and baclofen. I'm already on Klonopin, which is a treatment for it, anyway. I hate being on vicodin, but last night I tried without it, and woke up in excruciating pain twice, on Klonopin, so I took half a pill, but I can hardly move my mouth this morning. On the bright side, my D3 is back to normal on mega doses, but now my B12 is too high!! What's with that...it's a water soluble vitamin. I need to call the nurse back this morning, so I better get off of here and do it. Thanks again. I'll let you know how it goes. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted October 22, 2012 Report Share Posted October 22, 2012 I am so sorry to hear about your pain - I know it can be excruciating as a family friend has it. And although I don't have it I do have something weird going on w my Trigeminal nerve. It is as if it is aggravated. Not a constant pain, and not a sharp pain but on and off tingling, numbness, achiness, and dull pain that seems to have an effect all over the trigeminal nerve. Sometimes I get chin twitching w it, eye pain / migraine pain, etc. Most common pain is right around the areas where I had the dental work that was the trigger for my initial onset last year and relapse this past summer. While I have been typing this I have had a dull pain in my lower left jaw and a slight painful tingling in my upper left gums. As I read your post I wonder if you ever had any of these types of aches/ sensations prior to the sharp pain and difficulties you are having now. (I've often wondered if this isn't some sort of either precursor to trigeminal neuralgia or a weird variant. My neurologist doesn't know what to say about this other than suggesting that I get a major dose of antihistamines prior to any future dental work as the trigeminal nerve can release lots of histamines when irritated.) Quote Link to comment Share on other sites More sharing options...
bellgirl Posted October 22, 2012 Author Report Share Posted October 22, 2012 My dysautonomia symptoms have always included my head and neck; when I first had the virus that triggered it all, my left eye was misaligned, I had major pressure in my head, and jaw rigidity, along with right sided weakness and neuralgia...then years later started with the dizziness/vertigo 6 years after ear surgery. My teeth became loose when I found out I was very deficient in D3, so invisalign was suggested; it started with my lower teeth hurting and shifting. It's on my right side.Called the doctor and did get a prescription for neurontin, and that was OK with my ANS doctor, so I'm glad I can try that tonight, instead of the hydrocodone (Vicodin). I also was blessed to get a rheumatology appointment for Thursday, from a cancelled appointment that became available, because my ANS doctor thinks I have fibromyalgia, too.So over all today turned out a lot better than I planned...blessings from above. It helps to be a nurse, as well in all of this, too, so now I'll see how the neurontin works!! Thanks for the tip of antihistamines. They make me extremely dry, but it's worth a try. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted October 22, 2012 Author Report Share Posted October 22, 2012 Oh, I forgot to mention that I do have increased lacrimation and eye issues as well, but they never have presented themselves when I've received evaluation. I have blurred vision and also unequal pupils on occasion, too, so I always knew that my facial nerves were involved with this too, it was just a matter of time, and the invisalign aggravated my lower jaw and bottom teeth issue, as well. The good thing is that my blood work at the rheumatologist will be ready in time for my next ANS doctor visit in Birmingham, so I'm very happy about that, too!! Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted October 23, 2012 Report Share Posted October 23, 2012 So Kim, My mom and I were discussing my progress (or lack therof) last night and we both think my condition is slowly getting worse. Some new symptoms, or symptoms getting progressively more pronounced such as what used to be licorice legs has, at times, turned into me not being able to put weight on my feet (on a couple of bad days the past week). And what used to be a shortness of breath is now often combined with an inability to speak in full sentences- just a few words eek out. And your new symptom reminds me of this discussion. Yet, all along I've been told/read that this condition (Dysautonomia- POTS & NMS) is not progressive or degenerative. Would love your opinion on this. I'm thinking especially about those of us who get Dx a little later in life. Any thoughts? In fact, I think I'll start a new thread on this. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted October 23, 2012 Author Report Share Posted October 23, 2012 Kelly, Pure Autonomic Failure, and Multiple Systems Atrophy are progressive. You can read about them on this site...What medications are you on, if you don't mind me asking? You can PM me, if you like, and we can discuss it more. Do you have a neurologist or an Autonomic Nervous System doctor or Cardiologist?BTW, I did get a prescription for neurontin, which is what I wanted in the first place, and took one last night...it is so much more bearable. It really helps being a nurse and my PCP is the best. I even checked with my ANS doctor to get the OK on it, so things are looking up!! Quote Link to comment Share on other sites More sharing options...
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