We are patients living with Trigeminal Neuralgia, here for your support.

Plz Advice any Permanent treatment/Solution for my disease.

Hi I am 22 and suffering from a painful disease and not able to diagnose from the past 3 months. I am feeling frustrated switching doctors around 9 to 10 in number viz medicine, ENT, Neurologist and even to Dentist. I am having pain in both of my head temples, moving to cheeks, jaws, ears and having heavy head feeling, pressure and inflammation. This pain increases to a dreadful level when I cover my head with turban otherwise it's less.

Now let me describe my meetings with Doctors as follows:

Medicine Doctor - Prescribed simple Headache medicines and paracetamol tablets. Advised for PNS and Skull CT Scan. Skull CT Scan found normal. Little Sinus infection found in PNS. Moved to ENT and found no relief.

ENT: Given Antibiotics, Nasal drops, Anti allergic, Pain killer.
Sinus cleared but little relief from Sybellium and Xenobid. Moved to Neurologist.

Neurologist: Given me antidepressants and mood-stablizers.One of them was Amitriptyline. Taken but no relief. Moved to Dentist.

Dentist-As per him may be a TMJ problem and put me on a Splint. No relief but found some relief with Etrocorbix.

Now finally I decided to try Carbamapezine researching on net and its relieving me but I have taken only 2 doses as of now.

But I want to confirm whether It's TMJ problem or Trigeminal Neuralgia or some other problem.
What is the reason for Sensitivity with head when tying turban/cloth, reason for Heavy head, facial pain particularly jaw, cheek and loss of Concentration.
Plz advise any permanent Solution and treatment ASAP.

0 members like this

▶ Reply to This

Replies to This Discussion

Permalink Reply by elstep on February 9, 2012 at 10:07am

HS I am not a doctor and have no medical background but i know that one of the indicators of having TN is your response to Carbamapezine. If you find it helps the pain then this will be a strong indicator that it is TN.

Unusually I found I also had a condition called Temporal Artritis which also gives head sensitivity, temple pain and jaw ache,but It would very unusual for someone of your age to have this as it is usually over 50s who get that. An indicator of this condition is blood tests which I assume you have had.

My advise would be to give the Carbamapezine longer to get into your system and see how you are. I wish you well and keep in touch so we know how you are .

▶ Reply

Permalink Reply by vesper venustas on February 9, 2012 at 10:14am

this sounds vascular; have you had any blood tests?

▶ Reply

Permalink Reply by Cindy on February 9, 2012 at 10:21am

Sounds like TN. I take 1,200 mg of Carbamazepine daily. It does have side affects, one being memory. I too have mild depression, I contribute that to the medication. I take requip for horrible Restless Leg Syndrome. Permanent solutions, that is a tough one. Many of the procedures are NOT permanent. MVD was suggested for me by my last neurologist.However, since have moved and my current neurologist wants me to 'control' it with meds. Meds have side -effects, so the cycle just goes on and on. TN for me has flare ups, but I can never be off the meds. Maybe just 200-400 mgs. less each day. Right now I am in a flare up and having a very hard time keeping it quiet. Its a very tough disease and my attacks can get so bad that they burn my brain for 5-7 minutes. Other times I get the sharp elctrical shock feeling. I hope you can find someone to help you more.

▶ Reply

Permalink Reply by HS on February 10, 2012 at 9:13am

Plz reply/advise why the pain increases in my head when I cover my head with turban/cap.

Its seems to be an exceptional case where I am feeling pain, pressure, sensitivity, inflammation in my head and face on wearing turban/cap and Spectacles.

I am not able to diagnose what type of problem it is whether TN, TMJ, Migraine or some muscle contraction problem.

▶ Reply

Permalink Reply by ollehg on February 10, 2012 at 10:00am

Sounds exactly the same as my mum's symptoms... and a similar journey of trial and error - except for her it took her 12 years to get it properly diagnosed, and how she has changed in that time. All I can say is, keep on it and get a resolution asap, as I'm sure you are. She eventually has ended up with a Painshield, and it's doing wonders for her over the last few months.. she's a new woman (almost!). Definitely worth trying some of the cheaper solutions too, though such as the Carbamapezine and other doctor recommended stuff.

▶ Reply

Permalink Reply by elstep on February 10, 2012 at 10:14am

HS have you had a blood test yet? Just to rule out other conditions.

▶ Reply

Permalink Reply by kimburlee on February 11, 2012 at 5:21am

Symptoms and actions sound simular to mine. When I went to Neuro I told him not to touch my face anywhere! He put me on carbamazepine and it took care of pain in a few days. He went up slowly on dose. I currently take between 800-1000mg. I took some asprin as perscribed too for a couple of days too. I have been pain free since Dec. 20th. I had one breakthrough pain I think because my sinuses flared up. It only lasted a minute and I am still ok.

In the beginning I felt like I had TMJ also, My dentist offered free x-ray and it was clear. MRI clear also. I have been to ENT and Dentist. I took alot of antibiotics and it didn't take care of sensation I was having.

I hope this helps.

▶ Reply

Permalink Reply by Yakub on February 11, 2012 at 6:20am

Tell you neurologist that the pain is responding to carbamezapine.
Though TN usually found in over 50, but no age is immune to this disease.
If your pain is controlled by carbamezapine it is likely that u may have TN.
Check ur BP, if it is high u must control it.

▶ Reply

Permalink Reply by HS on February 11, 2012 at 7:19am

No I didn't have a blood test. What type of blood test do I need ?

elstep said:

HS have you had a blood test yet? Just to rule out other conditions.

▶ Reply

Permalink Reply by elstep on February 11, 2012 at 7:27am

It is a standard blood test to see if you have high levels of inflammation. ESR and CRP are the ones which showed I had high levels of inflammation, your doctor could advise which other ones you would need testing that are related to conditions that give you the symptoms like you have. Ask whilst the blood it being taken ask if you can be tested for anything vascular.

▶ Reply

Permalink Reply by HS on February 11, 2012 at 8:40am

Hi everyone plz let me know what is the reason for pain and inflammation in my head further spreading to ears, jaws and teeths only when covering with Cap/turban ?

What is the reason for sensitivity to touch in head temples ?

What is the reason for heavy head and feeling of pressure ?

What is the reason for teeth pain and sensitivity in this case ?

Plz guide me proper treatment as I am not able to diagnose this for long and spending a lot on unsuccessful treatment ?