Please help!! Not your normal headache!

[Moonflower09]

I have trigeminal neuralgia
Diagnosed 2013. Determined idiopathic.
It usually is a quick, intense pain but then subsides.
Not now.

Recently I've been diagnosed with eosinophilia. Too many of eosinophils a type of white blood cell.

About a month ago, the trigeminal neuralgia started waking me up at night. And the "zap" was different. At that time, it was in my left eye. And the "zap" held on. Unbelievable painful. I felt paralyzed until it FINALLY stopped. How long, ? Seemed an eternity. But it was quite during the day.

This morning it woke me up again. This time, top left scalp and ran to my top left lip. And it hasn't let up all day. It comes and goes, but it doesn't stay away for long.

When it's not "zapping" I am left with an odd tingling sensation on scalp, upper left lip, and cheek.

The other odd thing I noticed today, after an intense ZAP, my brain went foggy. Had the hardest time making it thru work. Major brain fog, dizziness, and my vision would go blurry.

Now I am completely exhausted.

Anyone know what's going on?
Do I need to call my doctor?
Neurologist will just want to do another MRI. Still paying on the last THREE that showed nothing.
Do I call my hematologist?

Lastly, Almost 2 weeks ago, I had an unexplained fever of 102. No other symptoms. Hit me out on walk with dog. Barely made it home. It knocked me out. I crashed, sweated like crazy, and my daughter said I was trying to say something to her but she couldn't understand me. I also remember feeling like the walls were pulsing and or moving. IT WAS NOT FUN.

Is this coincidental or could they be related?

Please someone! What is going on???

[Vldc]

And yes it does change and gets worse with each flair up I am sorry to say. It also affects your speech and often speaking triggers the pain so you can't talk. Yes. Mind does get a bit foggy especially from meds. I also become less tolerant to cold when I have a flair up and need to be warm. Heating pad helps.  You do need to touch base with all your doctors. Hate to tell you that. Find a chiropractor!!

[Vldc]

It is important to detox your life as much as possible. Eat healthy, excersise and get rid of the toxins such as parabens, sulfite and phthalate in your soaps, detergents, hair products, lotions. I am on amitriptyline daily and recently had a very bad attack and was put on and anti-seizure med called Gabapentin. It worked but I will only use that when I have to. I hate medicines. Also go on low doses and go up till you figure out what your body needs. Also there are triggers. Mine is my allergy to mold. My last episode happened after I was stacking firewood and doing yard work. I forgot and did not wear a mask. I had a weekend from HELL. Mold causes your blood vessels and sinuses to swell which trigger the nerve pain. I am now even buying air purifiers for my house. A good neurologist is important. And for me my chiropractor is godsend for my therapy. He has a couple of patients with TN and has done extra research for treatment. Good luck

[justcheryl]

I hear you about all the weird symptoms and changing pains.   It hurts unbelievably bad.  I have most of your symptoms and pains.  My neuro calls it Neuralgia,  as it is all over my head and scalp.  Moved to my face just recently.  Whether it is TN or Neuralgia (personally think both are the same)  they change move and usually get worse with time.  Ned's may work for a time; may gave to be changed or take higher dose of meds.
You  Need to see a neuro doctor. Discuss with him the findings of previous previous Mr I'm and make an informed decison.  TN  can affect speech, I was in bed all day Tuesday with brain fog, my hearing is affected as is my vision.   After some activities I am fine after some I am wiped out.  I have learned to live each minute as it comes.  I never know what when or how the pain or nerves in my head are going to affect me.  I can go a day with no zaps or it can be almost continous the, at least it feels that way.  I am on gabapentin and propananol.   Helping a little sometimes.  
Please see your neuro for help.  
Praying for you.  Cheryl.

[Moonflower09]

I'm taking lyrica. Tried other anti-seizure medications and they didn't work.

Hematologist wants to do a bone marrow biopsy.

[nancy99n]

I would advise you to go back to your doctor, or if you feel your neurologist is not helpful, find another doctor.

Are you on any medications for the TN?  The pain can be controlled by one of the anti-seizure medicines usually prescribed for TN.

Also, please post your question on the Neurology Community. Some of the symptoms you mention, like not being able to speak, sound like a stroke.

Definitely go see a medical professional.

[Moonflower09]

It's changing again. The electric shocks. Now feels like a live wire going off in my head. I can literally feel the nerve line that runs from my scalp to my lip. And I kid you not, it feels like the impulses current are running back and fourth.

PLEASE!!!!!!!
This is the MOST PAINFUL THING EVER!!!!!!!!

What is going on????? Is it normal for TN to "change"????