Atypical Trigeminal Neuralgia and pinched neck nerve!

My father has Opthalmic and Maxillary TN, and finds that the only control is high dose Gabapentin 4 times a day. Sometimes this is not enough, so he has learnt some self-hypnosis techniques to help control the pain. Acupuncture was not successful, or was cranial osteopathy. Due to not being able to eat he has lost about 3 stones in weight - which was no bad thing, as this has helped ease the symptoms of an inoperable aneurysm!

Welcome to HP bonita46.

I can empathise with the pain you are in as I had a similar problem about 18 months ago and I wouldn't wish it on my worse enemy! I was tentatively diagnosed with Trigeminal Nerve pain by a dentist and when I was told what the alternative treatments were it was a very scary time (on top of suffering the terrible pain!).
I didn't want surgery because of the risks and in the end I spoke to my Pharmacist about how to lessen the pain and he suggested alternating Ibuprofen with Paracetamol so I didn't overdose on either. That helped to take the edge off and I was able to gradually start eating again much to my relief.

I am also a Reiki healer and spent a lot of time on giving myself healing every day and practising relaxation techniques and breathing exercises and gradually, so small at the beginning that I didn't notice, the pain started to become managable until one day I realized the times between each 'bout' was getting longer and longer. I carefully came off the pain killers and life gradually got back to normal!
Would a TENS machine be of any help in blocking the pain from travelling to your brain? Unfortunately, whatever method you try will probably not work overnight but try going with the pain and not fight it and it may make a difference. Taking back control from your body can be very powerful!
I really hope you get some relief soon and that others here on HP can help in some way. If you want why not pop into the Healing Forum and ask for healing to help your situation? You never know it might help?
Take care

Love and light

reikiangel

xxx

My father has Opthalmic and Maxillary TN, and finds that the only control is high dose Gabapentin 4 times a day. Sometimes this is not enough, so he has learnt some self-hypnosis techniques to help control the pain. Acupuncture was not successful, or was cranial osteopathy. Due to not being able to eat he has lost about 3 stones in weight - which was no bad thing, as this has helped ease the symptoms of an inoperable aneurysm!

Hi Jabba,

Thank you for answer.

Can you please write me some other name for Gabapentin? If there is no other name, can you write what for are those tablets? I know only two for TN and one of them is Tegretol after I felt terrible. The other is Rivotril (there is other name, I don't have it now here) and helps only in the evening.

Thank you in advance,
Bonita

Hi Reikiangel,

Thank you for kind answer.

About Ibuprofen and other pills they don't help me at all. From the simple reason because I am taking different pills since very long time. They did help until December 2000 and then was over with tablets. It was over with therapies as well. Nobody did believe me and that is what makes me very sad. I had to leave my job because of terrible pressure from top of the head into eyes making me sleepy and unable for anything.
About Tens: they gave me on the right shoulder (because of other Neuralgia), 2002 and it was worse than before.

I have pains on the top of the head and from there pain comes direct to the right eye and right ear. Head CT, 2002 has shown some areal sclerosis on the bottom of the skull. They have done CT second time asking me, what pains I have? When I told them, they said nothing.

In September 2006 I had head MRI (outside this country) and there was Vein 10x17mm on the bottom on the skull. Again they have asked, what kind of pains do I have and I had to go to repeat MRI. Doctor there told me, all is from neck muscles and I can do it with gymnastic. I didn't know that muscles are on the brain or head. As I am talking Chinese!

I am studying this TN since very long time and (on the beginning) it was really not me: the pain comes like from the heaven, just few seconds and is over. After many years I came to atypical Trigeminal Neuralgia and there are steady aching pains. I have found also that blood vessels make pressure on the nerve and that is what I have. To have operation is not sure, because one woman with typical TN had operation from Ganglion Gasseri but pains came back soon.
For me is strange, that I have to study about atypical TN and not the doctors. The worse thing is that they don't help, Much worse is I didn't get any money from Employment Office (for more than 23 years of work, here), because they don't have something from doctor. Maybe I should be some kind of invalid or what?
I know there is help for me, because I have got help already but now I am in some kind of circle where I can't come out.

About Reiki healing I will think about it.

Kind regards,
Bonita

Hi Jabba, Thank you for answer. Can you please write me some other name for Gabapentin? If there is no other name, can you write what for are those tablets? I know only two for TN and one of them is Tegretol after I felt terrible. The other is Rivotril (there is other name, I don't have it now here) and helps only in the evening. Thank you in advance, Bonita

The other name that is often used for gabapentin is Neurontin - he was also given a generic carbamazepine for a while. He has been offered surgery (microvascular decompression) but with his aneurysm, the risks are too high. I have a client who had TN for 8 years before getting the MD surgery - it revolutionised his life. He wished he had been offered it a the beginning instead of enduring 8 years of misery. He was only in hospital for a day. Do you have this procedure available in Slovenia?

Hi Jabba,

I am glad for your client (what are you doing?) to do that surgery.

You must know that to play over and with head is very big risk. My neurosurgeon has shown me (head MRI, May 15th 2008) some shadow on the bottom of my brain and told me it is not possible to make operation from that. I have to wait for next MRI in October.
He wrote also, that could be Miom, Limfom or Cavernom. What is all that? I don't believe and still think there is a blood vessel that makes compression on my TN.
My friend’s (female) mother is nurse and she told me with something like that I wouldn't be normal (I am still normal even with the pains). In the last time I am often fainted (when I look down or will take something from the ground) and that comes from the head compression.

If I have cerebral atrophy there must be something from that or not? In some Forums members think, I have smaller head with that atrophy. My head is always the same. There is only bad head circulation (outside).

Thank you very much,
Bonita

Hello all

I was diagnosed with this condition,recently ( 5 weeks ago) and was given carbamazipine -400mg per day- but made me feel so depressed - i never got dressed for 3 days and the feeling that i wasn't there.. and just wanted to sleep - nothing else was offfered to me by GP, but i can't fault him really..

the pain was terrible.. radiating from my left ear to both sides of my jaw and into my head....only thing that helped was brufen... yes the dosage was way above normal.. and i was overdosing....but when you are in that postion you will do anything to get rid of the pain.. Now been discoved I have some infection in there but they would not expand on the information.

I can't chew anything and living on "mush food" (still waiting for the weight to drop off ...few pounds overweight.. lol) The local hospital is useless.. refused to look at it being "urgent" and i have to wait another 4 weeks for me to be seen...

I empathise with anyone who suffers - and amazed it can just happen so quickly...would love some other info or hear of others and how they are dealing with this..

Email me,Crystal. xxxx

Hi again, I have been trawling the internet for info for my problem but came across this

and thought of you! Not sure if it is what you are looking for but it might be of help.

Take care

Love and light

reikiangel

xxx

Hi all,
Just a quick note.. I spent 3 months thinking and was told originally that I had TN, tried gabapentin - didn't work, only thing that did was 2x400mg of brufen, yes overdosed by taking twice a day.... this is a long story.. posted in other sections..... spent twice as inpatient as complications set in.. but was actually diagnosed with TA - temporal arithis.. which has very similar symptons - head, face and neck pain... ( my gp put 2 and 2 together with 4 previous ESR blood levels, as I had constant inflamation and bleeding..) they wouldn't commit themseleves that maybe a wrong diagnosis was made all those months ago... :eek::eek::eek:

xxCSxx..:D:D:D

Hello to all,

I wasn't long time here as I have studied all about my pains.
Now, I understand better my pains, but still can't help myself.

When I have pains, my neck muscle is swollen. From there on very sharp pain is going behind the right ear into jaw bones and eyes holes. I feel very sleepy and now, I can hardly wash my hair. It looks like the stone is pressing from the frontal head into my eyes.

In the time since now, I have done my Astro Medical Research (I love to do that more) and also my Face Photo Research. On some photos (I change like weather changes) is very visible that Trigeminal nerve (maxillary) is pressing into my nose and it looks like the nose is a bit aside.
I have brand new diagnosis from ENT doctor: Rhino Sinusitis chr. hyperplastica. There is ticker right mucus membrane down there, but mucus is hidden somewhere. I can't sneeze (if yes, I feel much better); nothing is flowing out of my nose.
The last X-rays show that I have calcifications on the Ligament (tendon) nuchal in the area of C6 (the same was 1993), as also calcifications from Supraspinatus tendon and Humerus. I have the same on Humerus the year 1998, but thought that is somewhere else and not bellow right arm.
Tendons and muscles are here the cause, for sure (all other are reflex pains). About 1,5 year Naprosyn was good, but it has bad side effects for my Liver (cysts) and Kidney, very sensitive. After taking Naprosyn, I was helpless and very sleepy for about three hours. Now, I take them only in the evening together with Rivotril (for TN) and one pill for sleeping.

I wonder why tablets with Pseudoephedrine Hydrochloride help me. Ephedrine is probably for better head circulation and as I know, tablets with Hydrochloride are for Rheumatic Myalgia. Just those tablets I need are not possible to get now (only 12 pills per month).

B.

Explanation to this Forum

I have yesterday registered as bozana64, because my previous email is blocked. I can't come in because mail.com wants me to register on the new way.

My ATN is still with me, but now I know more than before. I am thankful to all answers, but want to discuss more.

Regards to all,
Bozana

Welcome back hun...... I am still on Prenisolone 15Mg -( Now 4 years) which most of the time controls it, but boy - does it kick back if if I forget it or try to reduce the dose, even after 24 hours.:( I have not had any review on the condition by the hospital or doctor since I was finally diagnosed- just get thrown the meds 😎 Would be interested if other have same treatment or do they get reviewed??