Obsessive Compulsive Disorder (OCD), Multiple sclerosis (MS) & Trigeminal Neuralgia (TN) are they linked ?
I have wondered this for some time and would like to get peoples thoughts and views.
Does anyone here suffer from MS or OCD, do you think this has an effect on your TN ?
I don't have MS. I have had diagnosed OCD for 20 years, and was probably undiagnosed for most of my life. I only developed ATN two years ago. I have constant burning in my ear, jaw, tongue - left sided. Something is slightly swollen in my submandibular area - doc says salivary gland, ultrasound said lymph node. All docs and scans agree - not a concern. easy for them to say! As far as how my OCD plays in - I sometimes wonder if the ATN would have gone like a virus they initially said it was - IF I wasn't opening my mouth so wide no one would ever believe it, sticking my tongue out so far I could give Gene Simmons a run for his money, poking and prodding my tonsils or the swelling under my jaw hoping I can pop out the world's largest tonsil stone or salivary gland stone and VOILA all pain gone. You get the idea. And when I'm not satisfying those obsessions with physical compulsions - I am frantically searching the internet trying to solve my problems. I wonder how much pain I am causing myself and how much is real? I don't know, but I am going to surrender and try the Prozac the doc thinks will get me out of this loop... What about you?
A couple of people (non-medical friends) have asked me, "How often do you look at your tongue?" And in all serious manner, I'm like "In an hour, or a day?" Their reactions make me realize that TN aside, I have a problem - that I need to deal with. This has gotten out of control before...and we reigned it back in with some CBT...but it's gonna take a little more now that I have actual painful condition as well...
Also wanted to add, after reading your wall, that I distinctly remember the first migraine I suffered (with aura) at age 5...and have dealt with monthly or more for most of my life. And that I also very clearly remember the first time in seventh grade as I walked to school and turned my head to look at someone and a lightning bolt of heat shot through the side of my neck and face and I screamed out and grabbed my neck...It would happen on occasion like that pretty much sporadically from then on...now I wonder if it's all connected. Whatever it is, I hope it goes back to where ever it came from...and now :)
yes they are linked if you have Lyme disease. A Lyme patient can have all of those diagnoses but they are just symptoms of the Lyme. i suggest younfind a Lyme litterate dr and ask to be tested but only by iGenX labratory google iGenX they are te only trustworthy testing labratory for Lyme disease.
I have Sjogren's Syndrome which can mimic MS, and MS has not been completely ruled out for me. I also am ADHD with some Aspergery things I recognize, now that I have a son with these conditions...and he has OCD. Are they related? I feel they are, but I could not begin to tell you exactly HOW. Perhaps it is in the hookup of the brain that makes us more susceptible to TN? Or perhaps there is an overall autoimmune thing going on that makes us more susceptible to all of it? I honestly do not know.
My mom has TN and MS. MS damages the myelin sheath that covers the nerves. I have TN but not MS. I do have some other inexplicable neurological symptoms from time to time though.
I personally think the two are definitely related. I am the fourth person in my family to have TN. We all have high blood pressure and are prone to anxiety as well. I think that is all related too.
And I think TN can easily cause anxiety and OCD symptoms. Having an invisible and undiagnosable illness leads to a lot worry and speculation about what is happening. This is especially the case with my tongue pain (purple74 and I talk about it a lot!). It is incessant and won't go away. I am constantly convinced it is something more sinister. My mind just jumps there constantly. I have to remind myself repeatedly to stop it.
You seem to be so much better about it than I am Justjane! I can't stop looking, like if I don't look something will have a chance to be there! I sometimes wish I would never look...but then I would always be afraid of what is there. There is no win :) Except to tame the fear. I just finally gave in and took first dose of Prozac this AM. Just a few hours ago. It is not suposed to stop the pain, but is supposed to calm down my OCD...which could result in less pain from not opening my mouth and ripping my tongue half out, prodding my tonsils, etc :) I'll try to remember to post something about it in a couple weeks.
The lime angle is interesting. I did ask my doctor a while back when this first started, because I had a weird rash while I was on vaca just prior to all this...like a pimply or measly looking rash...but on my torso. We thought I was having some kind of sun allergy/reaction. It was weird. But went in a couple days. I actually switched to my once piece suit to try and cover it...It was just odd. Then a week or two later...bammm! With all this weird stuff. A few months of it, and I lost more of my mind ;)
Oh, my doctor said no way did he think I had lime...just not even interested in finding out even. Said people with lime are really, really sick. Said there is no treatment anyway. Whatever. That's been the reaction to most any of my ideas...lol!
justjane37 said:
My mom has TN and MS. MS damages the myelin sheath that covers the nerves. I have TN but not MS. I do have some other inexplicable neurological symptoms from time to time though.
I personally think the two are definitely related. I am the fourth person in my family to have TN. We all have high blood pressure and are prone to anxiety as well. I think that is all related too.
And I think TN can easily cause anxiety and OCD symptoms. Having an invisible and undiagnosable illness leads to a lot worry and speculation about what is happening. This is especially the case with my tongue pain (purple74 and I talk about it a lot!). It is incessant and won't go away. I am constantly convinced it is something more sinister. My mind just jumps there constantly. I have to remind myself repeatedly to stop it.
If you were inside my head you probably wouldn't think so. I know you can't stop looking at your tongue. I cannot look at it at all! I have had it examined so many times by my doctor. I am sure that she thinks I am totally nuts by now! I am afraid to look at it.
What I can't stop doing is thinking about it. All day long! Convinced it must be cancer and that I will probably die or they will have to cut my tongue off. As you know-my mom has TN, MS and had throat cancer 10 years ago. That is where a lot of my health anxiety comes from. Trying hard to except things and stop worrying about worst case scenarios.
Purple74 said:
You seem to be so much better about it than I am Justjane! I can't stop looking, like if I don't look something will have a chance to be there! I sometimes wish I would never look...but then I would always be afraid of what is there. There is no win :) Except to tame the fear. I just finally gave in and took first dose of Prozac this AM. Just a few hours ago. It is not suposed to stop the pain, but is supposed to calm down my OCD...which could result in less pain from not opening my mouth and ripping my tongue half out, prodding my tonsils, etc :) I'll try to remember to post something about it in a couple weeks.
The lime angle is interesting. I did ask my doctor a while back when this first started, because I had a weird rash while I was on vaca just prior to all this...like a pimply or measly looking rash...but on my torso. We thought I was having some kind of sun allergy/reaction. It was weird. But went in a couple days. I actually switched to my once piece suit to try and cover it...It was just odd. Then a week or two later...bammm! With all this weird stuff. A few months of it, and I lost more of my mind ;)
Oh, my doctor said no way did he think I had lime...just not even interested in finding out even. Said people with lime are really, really sick. Said there is no treatment anyway. Whatever. That's been the reaction to most any of my ideas...lol!
justjane37 said:My mom has TN and MS. MS damages the myelin sheath that covers the nerves. I have TN but not MS. I do have some other inexplicable neurological symptoms from time to time though.
I personally think the two are definitely related. I am the fourth person in my family to have TN. We all have high blood pressure and are prone to anxiety as well. I think that is all related too.
And I think TN can easily cause anxiety and OCD symptoms. Having an invisible and undiagnosable illness leads to a lot worry and speculation about what is happening. This is especially the case with my tongue pain (purple74 and I talk about it a lot!). It is incessant and won't go away. I am constantly convinced it is something more sinister. My mind just jumps there constantly. I have to remind myself repeatedly to stop it.
Oh, I know. Either way. It's so wild to have looked in my mouth and see something...no joke. I take pictures and can't find what I see in the pictures. It has brought me down...and I hope that the Prozac is going to help. I know exactly what you mean though. I am constantly thinking of how I'm not going to make it, how awful it's going to be when... So, I totally get it. I feel like I'm crazy...and it's hard being crazy and in pain...I don't even know which part is real, and which part is self-caused. That's why I've decided to try the Prozac. And I will let you know how it goes. We have a different coping mechanism...but same basic idea in our heads, I think. I don't have a parent, or even a blood relative with this, or with any head and neck cancer. But right around all of this, I did have a 37 yo brother in law and a 42 yo sister in law pass from different cancers...I was a smoker and that added to my concerns. I just feel so out of control, about it.
Hey Dallas,
I don't suffer from MS but I do have Fibromyalgia which can sometimes mimic the symptoms of MS & OCD. I sometimes think that these two leave us prone to TN as well as depression. I'm sorry to hear that you are in so much pain, hopefully the Prozac will help, I feel that it did with mine but I was also trialling various different drugs at the same time so I can be 100% sure. I have no family history of TN but I do have other family members who also suffer from the Fibromyalgia & the depression.
Anyway, best of luck, hope you feel better soon,
Dee :-)
Hi, I don’t have MS but I do have a mild form of OCD alongside my atypical TGN (or whatever it is), although I think think is mainly as I’ve always been quite an anxious person and the TGN has made me paranoid over everything being a possible flare up in life now after so many years. Interesting I also have an issue with my tongue like a couple of people here have mentioned though, it’s either sore, experiences tingles, or more often just feels too big and bumpy, I’d not mentioned this to anyone before and it was starting to worry me