Atypical trigeminal neuralgia?

[medquest2009]

Hi,

I am a 31-year-old female.  I have had a severe facial pain and a stuffy nose on the right side for almost five years.  The pain is rather dull and is present most of the time but there are some periods when it gets much worse (almost like a tooth pain, just in the nose area).  It often gets worse at night when I am lying down.  I have used decongestants (e.g. Dristan) and steroids (e.g. Flonase) to make the nose less stuffy.  They help somewhat but not completely as it feels that the nose is stuffed somewhere deeper.  Sometimes it feels like the pain is in almost the whole right side of the face and my right eye gets watery.  I generally have a severe insomnia and this pain and a stuffy nose make it yet much worse.  This summer I was overseas and one of the doctors suggested that it might be trigeminal neuralgia.  I started taking Tygretol.  First, taking even one pill (200 mg) helped.  I was really happy though after Tygretol my face feels kind of numb and I have some other side effects.  After about a month I had to increase the dosage to two pills as one pill was not working anymore.  After another month to three pills.  And now to four.  This is kind of scary.  Sometimes I also have to take some medications against the cold s.a. ContaC to relieve the pressure from my nose and head.  The "blocking" sometimes goes to the back of my head and I feel like something is "ticking".  Sometimes I also get migraines staring from the right side of my head and start throwing up with mucus.  Generally the right side of my nose is constantly inflamed (and my white blood cell count is usually increased).  My questions: 1) From what I read on the Internet, it looks like I have a trigeminal neuralgia, does not it?  Especially since Tygretol helps.  2) If yes, which procedures could help (do not want to keep taking more and more pills)?  3) Can a stuffy nose be one of the symptoms of the (atypical) trigeminal neuralgia or is this a separate issue I need to look at?

More history: My health problems started about 12 years ago.  I have had an extremely severe insomnia ever since (mainly the difficulty of falling asleep till the morning but recently started waking up suddenly as well).  I pretty much cannot sleep without pills anymore and even with them I do not get enough of sleep which is exhausting.  (I even started taking 50 mg of Zoloft about a year ago as it is very difficult not to be upset with how my health affects the quality of my life.)  About a year after my insomnia started, I found a nodule (adenoma) on the right side of my thyroid.  It was 1.5 cm then (which means it could have started growing at the same time when the sleep disorders started) but it grew till 6 cm and was finally removed 2 years ago.  I am on Synthroid 1.12 mg.  As far as my sinuses are concerned, I went to several ENTs.  I had 3 surgeries within the last 2 years: a benign polyp is removed and the deviated septum is fixed on the right side (where I still have the problems - the CT scan of the sinuses and the MRI of the head do not show anything) and the inverted papilloma removed on the left side twice.  I also had my tonsils removed recently.  The alergies (allergies) and the sinusitis were ruled out.  The blood tests are fine (other than the WBC count that I mentioned earlier).  The antibiotics do not help.  An interesting thing to note that most problems are on the right side: my thyroid, my nose, my teeth (root canal, wisdom tooth removed), my head, my eyes (right eye sees worse).  The problems with the eye vision started about 3 years ago (-2/-2.5 now) which is a kind of strange age for this change.

I will really appreciate any help I can get!  Thank you very much in advance!

[medquest2009]

Another medical problem that I started having since my insomnia started is rapid weight gain and inability to lose it.  I have gained about 40 pounds.  It went down somewhat a couple of times but it is impossible to mantain it even with a diet / exercise.  I decided to add this information just in case (to have my complete medical history here).

[hava]

Start doing this exercise everyday and you will start to notice benefit after a week.Come back to report your progress and I will describe more exercises to control the weight.Do give this a try with concentration on breathing, as you cannot keep taking more and more tablets.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after 1 minute.
Anulom Vilom -  Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep breaths into the lungs.

[Fluffysmom]

I'm kind of new to trigeminal neuralgia, so I'm not sure about the stuffy nose part of it.  It sounds like you've been through the wringer, and there are a lot of factors in play.

First, let me address the weight gain; it is totally common with insomnia, and hard to combat, but we have to find a way to win, because it is vital to improving our health.  I've struggled with it for years, but got a good physical therapist, a great pain specialist, and was able to work my way up to a good exercise routine and totally changed my eating habits.

I lost over 100 pounds, and felt great.  I had my pain issues, but was working around them.

Then I herniated a disc in my back, and a couple months later woke up with acute tremors, dizziness, lack of balance, and mostly, fatigue.  In a year I gained back 40 pounds back, fighting all the way.  Well, sometimes I just lazed around, unable to do much.

One of the troubles with fatigue, is that we feel like eating will give us energy.  I had to give up caffeine because of the tremors, but I'd find myself needing choclolate for a pick-me-up.  Even my beloved organic granola bars, when too many are eaten, add weight.

It's hard to find the energy to shop for, let alone prepare, meals with fresh fruits and vegetables, whole grains, beans, legumes, etc.  

I had totally made the switch to whole grain, but then the latest bout of Trigeminal Neuralgia hit, and made it almost impossible to eat my granola, whole grain flax and seed bread, cold fresh veggies and fruit.  It actually started when I was eating a lovely salad with roasted veggies, quinoa, nuts, goat cheese, and balsamic vinaigrette over fresh local greens on Maui.  I slowly finished the salad, chewing only on the right side, but after that I had to choose different things not to set it off.

I had to give up the Roselani ice cream they make there; even eating only on the right side, it would cause my left side to glow with pain within minutes after I ate the ice cream.  I've tested this with my favorite frozen yogurt since I got home, and ran moaning for warm water and a Lyrica for the pain.

Lyrica is also a medication used to treat TN, at least in my case, since I was already taking it for other issues.  I've heard that combining Lyrica with Tegretol, so that you get more pain relief and less side effects than just upping the dosage of one; you might discuss it with your doctor.

Hava has some great advice with the breathing exercises; they can help a great deal.  I just need to remind myself to do my mindful breathing more often; it reduces pain, stress, and makes it easier to smile.

Have you ever tried nasal irrigation, like with a neti pot?  You pour a luke warm saline solution into one nostril which then flows out the other nostril, gently blow, then repeat on the other side. I've found that helps any sinus issues that I have better than any over the counter or prescription medication. Most health food stores sell neti pots; I think I've even seen them at Walgreen's.

Another thought; you might research Atypical Migraines.  I've heard some interesting stuff about them, things you would never have thought migraines could cause.

Wishing you all the best

[medquest2009]

Thank you very much for your comments!  I will look into the suggestions from both of you.  I see from your message and from the posts on this and other sites that so many people suffer from such serious health issues.  But as you said, we just have to keep fighting...  Good luck to you too!

[medicmommy]

I read your post and thought of my husband...His pain started in December of 2007 when he had meningitis...Like you, he has been through multiple medications, tests, antibiotics, etc...He was originally diagnosed with "atypical migraines or cluster headaches"...He's been through 23 different medications (none work) and has been told he is mentally ill...He has up to 4 severe head/face pain episodes per week, and  medicating himself into a near coma is the only way to escape the head pain...
I was wondering...Have you ever experienced ringing in your ears, or vision or hearing changes on one or both sides of your head just before the pain starts? Have you noticed if it mostly correlates to barometric pressure changes? He also has the molar and sinus pressure...He's seen two neurologists, a psychologist, and a few other Drs who all make general diagnoses (otherwise really have no idea) and then pass him off to someone else...well, all the resources in our area have been exhausted and I began looking towards Seattle for help...I think I may have found it...I've discovered an institution that specializes in "neuropsychiatry" aka behavioral neurologists...they deal with folks who have nerve pain in their heads and often the depression that goes with it (or other psychological problems) that is usually caused by an event that creates the pain (like brain injuries, etc)...I'm hoping this will help...
As for you, thyroid issues can cause some of the symptoms you've described, but not all...I'm wishing I could help more...A word of advice, stay away from Topamax if you can...it's pretty awful...Keep posting! I'd like to know how you do...(((HUGZ)))~MM

[hopefulmotherof3]

I am a stay at home mother of 3 kids.I have had migraines or what theve been calling migraines for 9 years now wich have just incresed fom occasionally to a daily dull headache with more severety at times! I am currently seeing my 4th nurologist Ive had doctors say its psycological and pretty much call me crazy. Ive had them flat out say this is all I can do for you there is nothing else ! And my most resent pretty much call me a drug addict and say the only way she can help is if I get off all meds for pain (even motrin and tylenol )so I have literally been miserable for 2 months now!! They have me on a medium dose of Depakote ER and now a higher dose of  Nortriptaline and its not helping. I am miserable everyday I have had 3 mri, blood test they check me for MS everytime i see a new doctor ( every time it comes back negative so you just have migraines) but they dont believe how constant or bad my pain is! My husband just now heard of tregeminal neuralgia and the thing is I have just about  every symptom but i know if i take this info  to my nuerologist she's gonna think im a hypochondriac (wouldnt be the first time). Does anyone know of a good doc in the San Antonio Texas area that I could see to help me? Please any feedback would be great. THANKS!

[seemel77]

It is very interesting to learn of another who has a similar experience.  When my TN was active it would start with my nose running almost continuously on the right side, then I would feel as if I was inhaling frozen cold air that was so cold it caused incredible pain, the left nostril was fine.  It was very strange! I had what I referred to as a "fish hook" in my eye that was so extreme that when I was able to fall asleep with the help of medication the pain would cause me to moan in my sleep and then I would wake myself up crying in pain.  I visited the ER's and they treated me as if I were a drug addict.  I offered to trade the demerol in my purse for anything that would work.  I did find that a steroid injection coupled with toradol would relieve my pain for at least 2 days.  This is the combination I would beg for and it was amazing.

Of course, then I began taking an oral form of steroids which when coupled with the other meds relieved my pain.  Then the side effects of the steroids became unbearable mood swings, extreme irritability, difficulty sleeping.  BUT when you are in that kind of pain it can really work.  

If you understand that essentially TN can be caused by injury or you are just born with anatomy that somehow gets to close to each other, like a genetic malformation for some and the coating of the nerve is stripped away it is like an electrical wire without the rubber coating on the outside, if you were to touch that wiring you would get a jolt.  Now compare that to your nerve without its coating and a pulsating blood vessel literally bumping into it or wrapped around it....every time your heart beats it triggers the nerve sending tremendous jolts through your wiring.  

Dr.'s do not always understand nerve pain.  I would encourage you  to seek out via the web Dr's who specialize in treating nerve pain.  I had been to 4 neurologists who all said "you have migraines" "give the medicine time to work" "you need a blood level" blah blah blah!  I went to the Eye Dr. the ENT, the Primary, every where I went was given the same run around.  Finally I got fed up and found a specialist who was about 2.5 hours away, within 10 minutes and an extremely thorough neuro exam he gave me a diagnosis and a plan.  When the meds didn't work he encouraged me to seek out a surgeon.  I know people suffer for years with this condition and there is hope, I also used accupuncture, self hypnosis, botox injections to the nerve endings that were trigger points and then MVD surgery, I had 2 of them in 2006.  Prior to that I  wasn't given much hope.  

I would encourage you to find the Dr. who listens to you compassionately and who really understands this condition.  I was fortunate to have a pain management specialist that really did his wife had TN.

Just don't give up!