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Trigeminal Neuralgia/sinusitis

Hi I had this posted under the wrong community,

chronic sinusitis and trigeminal neuralgia
by missyndrome, Mar 18, 2010 03:39PM
Hi,
my first time on here.,  It's good to see others with the same problems.  I was diagnosed in 1995 with TN right side. At one point I was up to three different meds then had gamma knife procedure. It worked long enough for me to wene off of two of the the meds then it came back with a vengence but was able to control it with neurontin for a while. Two years ago I began taking Trileptal.  Long story short it flared up about 10 weeks ago worse than I've ever had it and haven't been able to get it under control. It has been excrutiating.  I worked only one day this week.  I also have a history of sinus problems.  Can that trigger the TN.  I have always been told no but this neuro doctor said it can.  Should I have MRI of head or what?  Also has anyone ever known of people who were on disability for TN?  I also have hepc and degenerative disc disease, I'm exhausted Sometimes I can't even think clearly.
Thanks so much for your input. I've never even met anyone else with TN, I'm glad to "meet" ya'll.  By the way I'm from Fort Worth Texas .

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Avatar universal
Thanks for the helpful post. Yesterday I requested short term disability from employer.  Spoke to Neuro doc and he will fill out form. I'm sure I had an MRI back in '95 that ruled out any tumors.  You know what?  I did have shingles back around that time! I have follow up apt. with ENT tomorrow and since I'm still having the sinus problems he will probably do the MRI.
I also put on weight with Neurontin and changed to Trileptal. right now am also on Lyrica (also makes you put on weight), dilantin and Tramadol.  I'm pretty loopy & sleepy. thanks again for the post
Missy
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Avatar universal
Hi missyndrome,

I am very surprised that your MD did not do an MRI back in 1995!  I understand that is almost a must to rule out tumors and such.  Did you get TN from having had SHINGLES?  The other cause is an issue with the TN nerve being too close to a blood vessel and they rub together.  or a tumor pressing against one or another compromising the limited space between the two.

I was told that because my TN is directly related to having had SHINGLES that any operation would be a hit or mis deal as there is no way to know where the infection damaged the nerve.   I assume if you had Gamma that yours is related to the nerve being  rubbed against.

The siniuses lie below and behind the eye. THE TN nerve splits into three parts  (hence TRI-Geminal)  called V 1,2,or 3.  V1 controls sensations and such in the upper portion of the head inclusing the EYE, V2 is from below the eye to the upper jaw and V3 is from the lower jaw and below.  They all go from the back of the head to the mid line of the face. Often only one side is affected.  It is also not uncommon for just one V distribution to be affected and not the other 2.  

Since the siniuses are in the pathway of the V2, it is possible for the TN to trigger pain in that area. If you have a sinus infection then the snius area is often swollen pressing on the nerves around it, and can trigger the TN.   I have All the areas affected, and I will often get a very deep ear ache just behind the ear.  I will also get a bad eye, headache, as well as pain in the upper back molars.  I have seen my eye MD as well as my PCP and Dentist, at the time of these flare ups and they all agree and have done test (dental x-rays, blood work physical exam)  and there is  never a problem that they can see.  Co-incidentely a day or so after these isses come up. I will have more pain.

As for getting on disablity YES go for it.  Talk to your PCP, and NERUO to get their imput as well as let them know you are going to do this so they can make sure the documentations are in your files.  Be ready for a fight, but do not let them wear you down.  Most likely they will deny the first attempt. make sure you ask for an appeal, and be certain to keep within the time frames they give you.  even being late with some form by a day is reason to deny.

IN ALL OF MY RESEARCH The Medical community states that TN is one of the most devestating and painful health problems a person can have,  In one article I read ( I think it was Wick-pedia) they call it the Suicide Desiase.

I was on the Neuroton and had a horribly time with it.  I could not function at all.   Thinking was a chore, forming a sentence was difficult, FOR ME the these adverse reaction from the meds ( as well as 50 pounds weight gain in 6 weeks!) was very deprressing and made the whole situation worce.  I felt trapped by the TN and in-moblieized by the medications.for close to 6 months.

I now take  Cymbalta(90), Ativan (.5)and Atterax,(25)  this seems to help quiet the pain so it is not so disfuntioning for me.  I still have some pain 24/7 and I will still get flareups. AN MD that goes to my church had shingles  the same time I did.  She takes the same Meds I do except in a higher does.  The atterax helps with the itch/pain sensation.  

Oh I also saw an infection Diease MD, he gave me a RX for VALTREX. to be taken for 10 days, if I know I will be having a stressful period (like exams or a child's wedding, going through a divorce) or a procedure. ( surgical or major dental)   The VALTREX is used for herpes, which is the cause of Shingles.  It has helped a little.  

Sometimes the flare ups will come out of no where and I struggle to find out what the trigger is.  Some days the trigger can be somethng so simple as my glasses pressing in along side of my nose.

Go for the disability, get an MRI and be ready for a fight.  Is there someone that can help advocate for you with the disability. cause the process can wear you down.  Oh and keep  a separate journal of the TN, pain what caused a flar up what meds you take what MD's you saw, dates of each visit and feelings associated with all of this.  Having all of this info in one place will make the application process easier.

Good luck

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