Feeling very upset, irritated and frustrated

Hi,

Just to brief about myself, I have TN on left side from last 3 years but no doctor diagnosed it yet. Have found myself from reading online. Have been to many neurologists and requesting them to please do my MRI as i am in pain 24/7. But no one is listening to me. The nuerologist gave me Lypotryp xl 25.

Please help me. Lately i am feeling very upset, irritated and frustrated. I work but lately i am not able to concentrate on my work as i have constant pain. Every day a new thing occurs. I have stopped enjoying the things which i used to do. I avoid talking to people due to the pain. I lay in the bed with lights off.My left side of face has swelling. When the pain is severe i cannot open my left eye due to swelling. Even the medicines don't work in severe pain.

Please suggest what to do.

I assume by "lypotryp" you mean amitriptyline? I know that works for some people's TN, but many people are prescribed a different class of medication (anticonvulstant). Have you been prescribed anything other than the amitriptyline? Since you said you haven't been diagnosed with TN, what is your doctor's diagnosis with respect to your pain?

I wouldn't be so assertive about wanting an MRI (which frequently doesn't show anything anyway), but I would be more assertive about the doctor trying different medications if what you've been given hasn't worked for you.

Unfortunately, you may have to shop for the right doctor. Try a neurosurgeon rather than a neurologist. Arm yourself with all the information you can gather. Read "Striking Back". Most of us have been to the state of misery you are in. What meds work for one person may not work for another. Whatever you do, DO SOMETHING. You are your best advocate.

Hi Jeff,

No, i have not been given any other medicine except lypotryp. Doctor is not able to diagnose anything. He says it is nothing. The doctor which prescribed Lypotyp, he prescribed the medicine to make me sleep after taking the medicine.

Jeff said:

I assume by "lypotryp" you mean amitriptyline? I know that works for some people's TN, but many people are prescribed a different class of medication (anticonvulstant). Have you been prescribed anything other than the amitriptyline? Since you said you haven't been diagnosed with TN, what is your doctor's diagnosis with respect to your pain?

I wouldn't be so assertive about wanting an MRI (which frequently doesn't show anything anyway), but I would be more assertive about the doctor trying different medications if what you've been given hasn't worked for you.

Thanks Cindy for the advice. I have tried also hot and cold pack which until a certain limit helps. Will surely buy "Striking Back". Thanks once again!

CindyLou said:

Unfortunately, you may have to shop for the right doctor. Try a neurosurgeon rather than a neurologist. Arm yourself with all the information you can gather. Read "Striking Back". Most of us have been to the state of misery you are in. What meds work for one person may not work for another. Whatever you do, DO SOMETHING. You are your best advocate.

I would also suggest shopping for another doctor, then. I honestly don't even think you necessarily need a specialist; just someone competent enough to listen to you, take your symptoms seriously, and then attempt to treat them. When I was diagnosed about 7 months ago, it was by a primary care physician who listened to me describe my symptoms, asked some questions, and performed a fairly basic exam. I had never heard of TN, but she obviously had. I've read here (and elsewhere) that one of the ways to diagnose TN is the patient's positive response to one of the more commonly used medications (carbamazapine, gabapentin, etc). I know that amitriptyline helps some people (from what I've gathered here, it's more commonly used for type 2 TN), but I'm surprised that your doctor has tried that and only that for you. I've now been on four different medications, not because none of them work but because I don't like the side effects and keep asking if there's something else I can try that might cause fewer problems while minimizing my pain.

You definitely need to advocate for yourself within the medical system. By that I don't mean attempting to demand a specific medication or test or surgery, but by being assertive that there is an issue that needs to be taken seriously and addressed. If your current doctor isn't doing that, find another.


Khushi said:

Hi Jeff,

No, i have not been given any other medicine except lypotryp. Doctor is not able to diagnose anything. He says it is nothing. The doctor which prescribed Lypotyp, he prescribed the medicine to make me sleep after taking the medicine.

Jeff said:

I assume by "lypotryp" you mean amitriptyline? I know that works for some people's TN, but many people are prescribed a different class of medication (anticonvulstant). Have you been prescribed anything other than the amitriptyline? Since you said you haven't been diagnosed with TN, what is your doctor's diagnosis with respect to your pain?

I wouldn't be so assertive about wanting an MRI (which frequently doesn't show anything anyway), but I would be more assertive about the doctor trying different medications if what you've been given hasn't worked for you.

Hi Khushi

Like you, I also have TN on the left side of my face. It has taken the medical profession four years to agree with me that it is TN, but this has only been confirmed on an informal basis. After taking many different pain meds, none of which took effect, including codeine and morphine, my local doctor prescribed a low dosage of Gabapentin which is an anti-convulsant and for a while, it helped. The dosage level has since doubled, tripled and quadrupled. My current dosage gives me problems with concentration and lack of energy, my doctor has therefore also told me to take Carbogen on top of which, I also have monthly steroid injections directly into the jaw joint. I would speak to other doctors, hopefully you will not have to wait long to find the medication which is right for you.

Do not push medical staff too hard for MRI, this will not confirm a TN diagnosis, this only rules out other possibilities. No one who has trained for years likes to be told how to do their job :)

Regards,

Juno

Hi Juno,

Thanks for the advice. after been to every doctor namely;Neurologist,ENT,Maxillofacial surgeon not listening to me, i myself found from the internet that I had TN based on quiz and my pain. Read books also on the same. One Neurologist referred me some medications for the pain but after taking those medicines, I had allergy all over my body so he had to stop the medicines. If he gives me mild dose, it does not affect and if he gives me strong dose my body does not adapt.

As of lately, i am only on Lypotryp and hot and cold ice packs and also sometimes i apply Ashwagandha oil on the face where the pain is coz no doctor is suggesting anything.

Juno said:

Hi Khushi

Like you, I also have TN on the left side of my face. It has taken the medical profession four years to agree with me that it is TN, but this has only been confirmed on an informal basis. After taking many different pain meds, none of which took effect, including codeine and morphine, my local doctor prescribed a low dosage of Gabapentin which is an anti-convulsant and for a while, it helped. The dosage level has since doubled, tripled and quadrupled. My current dosage gives me problems with concentration and lack of energy, my doctor has therefore also told me to take Carbogen on top of which, I also have monthly steroid injections directly into the jaw joint. I would speak to other doctors, hopefully you will not have to wait long to find the medication which is right for you.

Do not push medical staff too hard for MRI, this will not confirm a TN diagnosis, this only rules out other possibilities. No one who has trained for years likes to be told how to do their job :)

Regards,

Juno

Hi Jeff,

Thanks for suggesting. I also feel the need that a doctor should listen to my problems. But after going to so many doctors namely;Neurologist, ENT, Maxillofacial Surgeon, General Physician , i came empty handed. I also did not know about TN, then i started putting my symptoms on the internet,took quiz on the same and i came to know about TN. Every doctor gave me some or the other medicine but all failed. Some said it is Migraine, Sinus etc. others ruled out. The last Neurologist i met, told me that i am reading too much and i have too much information and it is all in my head that i have some disease. He asked me to stop reading. He said that i have nothing. That is when i stopped visiting doctors and started reading more about TN and its symptoms.


Jeff said:

I would also suggest shopping for another doctor, then. I honestly don't even think you necessarily need a specialist; just someone competent enough to listen to you, take your symptoms seriously, and then attempt to treat them. When I was diagnosed about 7 months ago, it was by a primary care physician who listened to me describe my symptoms, asked some questions, and performed a fairly basic exam. I had never heard of TN, but she obviously had. I've read here (and elsewhere) that one of the ways to diagnose TN is the patient's positive response to one of the more commonly used medications (carbamazapine, gabapentin, etc). I know that amitriptyline helps some people (from what I've gathered here, it's more commonly used for type 2 TN), but I'm surprised that your doctor has tried that and only that for you. I've now been on four different medications, not because none of them work but because I don't like the side effects and keep asking if there's something else I can try that might cause fewer problems while minimizing my pain.

You definitely need to advocate for yourself within the medical system. By that I don't mean attempting to demand a specific medication or test or surgery, but by being assertive that there is an issue that needs to be taken seriously and addressed. If your current doctor isn't doing that, find another.


Khushi said:

Hi Jeff,

No, i have not been given any other medicine except lypotryp. Doctor is not able to diagnose anything. He says it is nothing. The doctor which prescribed Lypotyp, he prescribed the medicine to make me sleep after taking the medicine.

Jeff said:

I assume by "lypotryp" you mean amitriptyline? I know that works for some people's TN, but many people are prescribed a different class of medication (anticonvulstant). Have you been prescribed anything other than the amitriptyline? Since you said you haven't been diagnosed with TN, what is your doctor's diagnosis with respect to your pain?

I wouldn't be so assertive about wanting an MRI (which frequently doesn't show anything anyway), but I would be more assertive about the doctor trying different medications if what you've been given hasn't worked for you.