December 9, 2012 at 11:18 pm #365sarahdionnaParticipant
I was wondering if anyone else has been diagnosed with trigeminal neuralgia, glossopharyngeal neuralgia or any other type of neuralgia. I was diagnosed with both trigeminal and glossopharyngeal neuralgia on the right side a few days ago. My neurologist said that he might get one patient a year with glossopharyngeal neuralgia, because it is so rare and it is even rarer to have a patient with both trigeminal and glossopharyngeal neuralgia, but it does happen. It basically feels like I am being tortured. For example, it feels like someone has punched me in the face and then pulled my teeth out without using any type of anesthesia. It also feels like someone is driving an ice pick into my temple/hairline/jaw and then shooting lightening out from the point where the ice pick was drove in at. There are also times where my teeth feel as if something really cold was put on them and my teeth were super duper sensitive to it. My teeth ache a lot and so does my jawline and cheek area. My throat will feel like there is a razor blade stuck in it and each time I try to talk or swallow it feels like my throat is closing up around it even more. It is excruciatingly painful. I become completely disabled when I have the really bad pains. All I can do is lay in bed and let the tears roll. I often times forget to breath. My husband has to do everything for me, includeing carrying me to the bathroom. I can’t eat, drink, talk, or stand up without collapsing either conscious or unconscious. I am down to 86 lbs, because of not being able to eat because of being in pain and from fearing that eating will cause another episode of excruciating pain. Before anyone suggest Ensure or other shakes, like so many people have already, swallowing also triggers episodes so it doesn’t matter if it is solid or liquid food. Episodes will last for a few seconds or for a few hours. Then I will have a break until the next episode comes.
Could the neuralgias be linked to all the stuff that goes on with us? I pretty much feel like everything is connected.
I am now on gabapentin, but I am still in pain here and there. Luckily, it isn’t as intense as it is without the gabapentin. The neurologist also said that I might have optic neuritis, because of some of my eye symptoms. I have an MRI scheduled in 2 weeks to see if I have MS. Test results for Lupus and RA (lots of joint pain and swelling) should be in within the next few days. I am really anxious about all of this. I am having a lot of MS-like symptoms, Lupus-like symptoms, and some really odd symptoms that the doctors I have seen so far have no idea why I would have them. For instance, I go completely color blind for short periods of time, the longest time being about 15 minutes. The neurologist did say that with MS some patients have a red color blindness thing where red looks washed out. I know what he is talking about with that, because that happens too, but every other color goes out sometimes as well. It mostly happens when I have been outside and come back inside. He said he doesn’t know why all the colors will be gone/washed out. I also go completely blind, but that is usually when I am standing up or doing physical activity. I assume that I am about to faint and I sit or lay down to prevent the faint. My vision restores itself shortly there after. When the lights are turned off, I see a strobe light type thing going on. My eyes sometimes feel like someone is squeezing on the back of them as if they are trying to push my eyes out of my head. Of course I see the glitter and gnats as well. Some days I can read the descriptions of Netflix shows or subtitles, but other days I have to have Nathan read them, because they are too blurry to see. I think that is odd because one day I see the words clearly, then I don’t the next day, and the following day they are clear again.
Should I go see an ophthalmologist?
I really don’t want to have MS. I’d rather have Lupus if I have to have one of the two. I do have Raynaud’s phenomenon. I was diagnosed with that two Fridays ago.
Diana Driscoll, I watched your video about MS and EDS and I have pretty much every symptom that you listed, except there is no toddler pulling on me. However, my right arm will go completely numb and feel all tingly for an entire day. If you touch the arm, it tickles and I get goosebumps in the touched area. Most of my symptoms are on the right side, but the muscle spasms and tremors happen anywhere on either side.
I also have unexplained infertility. Honestly, of all the symptoms and issues, this one is the worst for me. I would say that I would rather be physically tortured every day, but… that is happening anyway along with the infertility. I am completely open to adoption and gestational carrier. I don’t have to have the pregnancy experience, I just need the being a mother experience. I am really worried that no one will let me adopt with my medical history and gestational carriers can be expensive!!! My parents feel as if I should just give up on wanting to be a mother. I have already had to give up on every other dream (except being a wife and I am so thankful to my husband for that!) and I don’t want to give up on being a mother! It is all I want. Telling me that I can’t be one is the worst pain imaginable for me.
Thanks everyone for reading through such a lengthy post. A lot has been thrown at me since October and I just don’t know what to do. I do think that I am holding up really great mentally considering everything, but it is tough. I might still be in the denial stage a little bit. I know I have the stuff going on, but it hasn’t really sank in yet. I haven’t broke down yet, but I know it is coming.December 10, 2012 at 1:37 pm #3205PalominoMorganParticipant
I had a nasty month long battle with trimengial neurolagia earlier this year. Mine was caused by an overly aggressive dentist who packed a filling WAY too much. It caused an abcess and was inflaming the nerve. I got lucky (per the specialist I was sent to see) and the abcess popped with dental floss once I suspected it. Ewww. Disgusting, but it DID relieve that particular pain.
Have you been evaluated for TMJ or other dental issues that might be contributing to these issues? Just asking because maybe something there is addressable.
I have 9th cranial nerve issues but mine presents as lost gag reflex, choking, etc. If it is causing pain I’m not sure how to seperate it from the CSF migraines and other crap.
Good luck and welcome.December 10, 2012 at 2:27 pm #3208sarahdionnaParticipant
In 2005 I was told that I have TMJ, but in 2010 my orthodontist said that I do not have TMJ. I have lost my gag reflex for the most part. I know I don’t have an abscess or any type of dental thing going on with it. Maybe it is the intracranial pressure stuff pressing on the nerves.
Thanks for your reply and the “good luck”!
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