Posted by RN320 on March 11, 2007, at 9:20:16
In reply to Re: 10 months on EMSAM!!- Update, posted by exquilter on March 11, 2007, at 1:41:05
> Dear /m,
>
> I'm delighted to hear you sounding so well. And so sorry you have developed the TN. I had a couple bouts of it several years ago, it truly is worse than even childbirth. Neurontin and Depakote took care of it eventually. Mine was triggered by a very long session in the dentist's chair. Do you have any idea where this came from?
>
> ExquilterGood to hear from you, Exquilter. How are YOU doing? (We've "talked" on severval occasions via PB in the past.)
The only thing that I can think of that may have possibly started this bout with the TN is that I had a bad sinus infection (REALLY bad) that lasted > a month, and this started somewhere near the end of that. I was doing a lot of clearing of my throat, coughing, doing saline/antibiotic washes through my nose several times a day, and than the massive amounts of nose blowing that went on! It's logical to me that this may have done it. Alot of the meds that I'm on now mask signs and symptoms of infection, which is a big problem for me since I'm somewhat immune suppressed. This infection went untreated for a couple of weeks and the only symptom that I had up until it was discovered was that I had become really exhausted. I also had a lot of gross nasal drainage, but since I've got chronic sinusitis I ignored it since there were no other classic symptoms of infection (like headache, fever, etc.) My new Internist is very sharp and picked up on it while I was in her office so I started treatment immediately, but I think it had probably gone on for a few weeks prior. I'm wondering also if during that time I was infected and not receiving treatment that it could have also started the TN off? Those are the only things that I can think of.
The first time I had it, I was having multiple problems and was a diagnostic nightmare, because all of these things occurring at once were from a variety of causes. I had difficulty swallowing (turns out that by CT and MRI that I had many swollen lymph nodes along the right side of my throat), GE Reflux (which made me feel like the constant need for swallowing,especially at night) and both the difficulty in swallowing and the need to swallow constantly were also attributed to tardive problems that went away when the offending med was discontinued. Then I had this pain and buning sensation in my mouth. My dentist took one look in my mouth and said that I needed to see a periodontist immediately, and then my EX-Internist (who was maintaining that ALL of these symptoms were related to "anxiety"- just like he did with the parathyroid tumor, heart disease and diabetes that I'm now treated for by my NEW Internist!!) because my dentist felt strongly that not only did I have a dental (gum) problem, but also systemic illness of some sort, like diabetes (which my ex-internist blew off too). The periodontist told me that I was borderline Mucositis because my mouth was so dry, so i got the treatment plan for dealing with that long term. I had mentioned this excruciating pain to all of them, but really hadn't tied it to any triggers because I wasn't thinking about it in that way and there was just so much other crap going on that I was overwhelmed by it all (DDS and Periodontist mentioned TN as a possibility at the time- my ex-internsit said it was due to anxiety.) I have always been a teeth grinder, and religiously wear a mouth guard. My DDS said that I had TMJ several years ago. SO, you have to remember that ALL of these things occurred over a period of FIVE DAYS and to top it off I got a severe URI (including lungs, ears and sinuses) that ended up taking me 7 courses of antibiotics over 12 weeks to get rid of it. It's like I had such a long list of these odd things that were happening and unpleasant sensations (like losing my sense of taste and choking frequently when trying to eat or take meds....had to go to a Swallowing Therapist to re-learn how to take meds and swallow properly since the Tardive problem had made me change to way I swallowed to compensate) that it just looked like such a mess. Then I took myself to an ENT doc because my EX-Internist wouldn't believe that there was anything wrong with me and my DDS and Periodontist kept saying that there was. The ENT very patiently addressed each and every sign and symptom and tested, diagnosed and treated everything (and showed more than a little irritation about my ex-internist's behavior). By the time I saw him, the TN wasn't acting up that much and I wasn't really able to give it a great description or talk about triggers because there were so many things going on and I was so overwhelmed and although I'd heard of TN, I didn't know what it meant.
I know that I've blathered on here, and I guess the reason is that I'm interested in your feedback based on your experiences with TN. Do you think that I should share the bizarre set of signs and symptoms that all occurred in the fall of 2005 with the Neurosurgeon that I'm seeing this coming Friday? I'm kind of hesitating on this because even though there was an explanation and real test results (swallowing studies, MRI/CTs of sinuses and neck, etc.) to support his diagnoses, I look at this mess and think that anybody looking at it would probably think that I'm a Grade-A Nut Case, and then may not take me seriously- and I DESPERATELY need to be taken seriously, since I'm getting these "shocks" in multiples over short periods of time (like 3 or 4 in a 30 minute window), which are just unbearable and completely paralyze me from doing anything. It makes me really paranoid about eating (and I'm a diabetic, so that's become a real problem for me) and other stuff that are strong triggers. There are just so many of them.... and of course it increases the depression signs and symptoms (which I understand are related to the TN itself....my pdoc has reassured me that I'm not having a set back; it's just that my body has been through so much and simply can't continue to take the stress of anything more. He's working diligently with my Internist- a really TERRIFFIC female Internist that I've gone to since August, who has addressed and dealt with ALL of the things that my previous internist ignored in relatively short order- to try and keep me as comfortable and calm as possible until I can get something more permanently helpful done. She stared me on 300mg Neurontin at bedtime, and when I saw my pdoc 2 days later, he chuckled when he saw the low dose, and told me that "we are going to fix this as much as we can to keep you as comfortable as possible." Then he proceeded to increase the Neurontin to 600mg twice a day, and he said that he might increase it again when I see him on Tuesday. When I told him that 30mg of hydrocodone wasn't doing anything- I mean NO effect whatsoever...like taking a baby aspirin or less!-he said that he's not surprised because his experience with me is that I have a high tolerance to ALMOST ALL meds as evidenced by the fact that I've only ever responded to just about anything he's had me on over the years at high, sometimes more than the recommended maximums (which I know can be common in the Mental Health population, but it applies to when I've had to have anesthesia in the past and also I require huge doses of antibiotics to get a therapeutic effect. Ultram has no effect on me no matter how high the dose; neither do any other NSAIDs like Motrin at 800mg 3Xday.) My Pdoc is not big on opiate pain meds- probably because of what he sees with the drug seekers and addicts in his practice- but in this case had spoken to my Internist twice to convey his concern that I need to be on something stonger- and she has always promptly taken his lead, since he's known me for 6 years now. I'm currenlty on 30mg oxycodone every 4 hours PRN and it's having a very mild effect on keeping me calm and somewhat quiet. But when the pain hits, the Neurontin and oxycodone do nothing to dull it, but I guess that these meds do help me cope with it better. My best freind was taking less oxycodone than me for breakthrough pain in the last months of her life, and she was really sedated from it and it seemed to dull her pain, so I guess my response is yet another sign of the high tolerance I have for most meds.)
If you haven't already passed out or died from boredom by now from reading this ramble-gram of mine- please give me your thoughts. I'd really appreciate them, and also from anyone else out there who may be reading this who have had expereince with TN.
Thanks so much for your response, Exquilter. Regards to all,
/m
poster:RN320
thread:739754
URL: http://www.dr-bob.org/babble/20070308/msgs/740095.html