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228463 tn?1216761521

Psoriasis, Trigeminal Neuralgia & MS

I posted a few weeks back that I was started on a Medrol dose pack for the buzzing symptoms that made me feel like I was going to jump out of my skin.   I am now 2-3 weeks post the meds and have developed Psoriasis on my left arm along with what appears to be Trigeminal Neuralgia. I have sharpo shooting pains in my right eye, jaw, ear and back of head.  I also have a headache that will not go away.  My neuro is out of town until next week.  I do not have a GP, I just go to Urgent care places.  From what I have read there is not alot I can do about the TN but I wanted to know if any of you have episodes of this and if there is anything you have done that may help.  I cannot take narcotics, I am a recovering alcoholic.  Any suggestions or people who have maybe had surgery to deaden that nerve please speak up.  Looking back, I have had these episodes of TN 3-4 times over the past two years and did not realize they could be related to possible MS.

Thanks for your help!!!  Kristin    
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Avatar universal
So sorry to hear you're having such pain.
I too have Trigeminal Neuralgia,,,sooo painful! I get it on the top of my head-it takes my breath away, and sometimes it travels inside my ear! When I was seeing my neurologist for MS he gave me neurontin- a seizure med; I never took any because I'm not a great pill popper! Folks on the internet with MS mention this is one of the med's used for TN sufferers. Does it help with the pain? ?  Personally, I don't think anything does.

Anyway, I've since learned that Trigeminal Nueralgia is also a symptom of Lyme Disease, and since I'm now treating with antibiotics my TN is sooo much better.

I hope you find relief for this horrible pain! Nothing ever "helped" the pain for me over the years; I just grinned and bared it so to speak!

My heart goes out to you.....this isn't an easy thing to deal with.

tory
Helpful - 0
147426 tn?1317265632
I got SOooooooooooo behind in get answers to everyone.  I'm really sorry.  TN is one of the uncommon, but WELL-DESCRIBED
Helpful - 0
147426 tn?1317265632
Agian.....with feeling.....WELL-DESCRIBED ways that MS can present.  Actually it can be any of the cranial nerve problems like INO, or Bell's Palsy.  but it has to be considered together with all of your complaints.  But on it's own (associated with MS or not) it needs symptomatic treatment.  I suggest you look at the website for the Facial Pain Associates group.  There are treatments for it which do not involve narcotics.  I think Botox is one.   Other medical treatments for MS-related TN are Neurontin and Lyrica.   Another is surgery if it is found to be a compression of the nerve and not an MS problem.  Their website is:

http://www.fpa-support.org/

Here are some othe good sites to read about TN.

http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/types.html

I'm flying throughdoing quickie today.  I know this is late, but I hope it helps.

Quix
Helpful - 0
228463 tn?1216761521
Thank you all for your help and advice!  Jenn - I am sorry about your Grandma!  My mother, sister, aunt and uncles all have autoimmune diseases and that was very interesting to hear your story about your relatives.  My husband, a paramedic, also believes that we all have a genetic switch and you can be fine one day and then something can flip your switch and you will get whatever you are predisposed to get.  That makes alot of sense to me as I was a totally different person 3 months ago and now the wind blows and I get a new Sx or disease.  I hate not feeling well and having that affect what I can or can't do with my family.  I guess that is life at least for right now.  I appreciate all you r support!

Thanks again for all your help and I hope you all have a nice  weekend!
Take care,  Kristin  
Helpful - 0
216281 tn?1189755826
Sorry to hear that you are going through this!!! I have heard that it is painful. I also, have heard that there is not alot that they can do about it. I recall surgery being unsuccessful in treating this, as the pain usually comes back.  I recall them using some kind of Rx drug. Sorry I do not recall what it is. But, it has been helpful to some patients. So it may be worth a shot. I do not believe it was a narcotic. I don't have the time right now to research for you, but I will check later. I need to go out unfortunately. It is MUGGY!!!!
Helpful - 0
Avatar universal
I have had 2 bouts with TN,there's not a whole lot they can do for it.Theres meds that can lesson it.

Its extremely painful,I pray the duration is short.If these pains worsen go to the ER and get some releif for the pain.
Helpful - 0
Avatar universal
How horrible to have trigeminal neuralgia on top of your regular MS symptoms!  I know that must be painful.  I hesitated posting to you because I don't want to scare you, but I feel you should know this anyway.  My mother's mother developed spinal meningitis before I was born.  They don't really know what caused it.  She later developed a horrible case of trigeminal neuralgia.  My mom said that she would watch her mother, and it was just like lightning was shooting through her face.  She saw several doctors and decided to have surgery to correct the problem.  The pain was so bad, she just couldn't see living like that any longer.  Ofcourse, this was 27 years ago, so I know that medical technology was not near as good as we have now.  During her first surgery they actually put boiling water on the nerve to try and deaden it.  This did not work.  She decided to have subsequent surgery about a year later, when I was two years old.  During the surgery she developed a blood clot to the brain and never woke up from the surgery.  She stayed in a coma for about a week before it was decided to let her go.  I obviously never got to know my grandmother, but my mom talks about her all of the time, and what she went through with her medical problems.  Now it seems that every female on that side of the family is afflicted with some type of autoimmune disease, as well as her son.  I have a theory behind that.  From what I understand, Epstein-Barr virus can cause spinal meningitis.  I also understand that it can trigger the onset of an autoimmune disease of you are genetically predisposed to them.  I have been tested for Epstein-Barr and it showed positive for past Epstein-Barr virus.  My theory is that my mother, uncle, and aunt all became carriers of the virus, and past it on to their children maternally.  Only the female children are developing autoimmune diseases because women are much more predisposed to the diseases than men.  It would make perfect sense, but it is just a theory.  Anyway, I digress.  The reason I am telling you this is not to terrify you, but to make you really investigate this surgery before you decide it is something you want to do.  I have talked with other people with trigeminal neuralgia in the past, and it is really hard to even find a surgeon in my area that will perform the surgery.  It is a risky surgery, from what I understand, and is only done when the pain has become unbearable for the patient.  My heart goes out to you, and I really hope you find the answers you are looking for.  God bless you!

Jenn
Helpful - 0
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