Trigeminal Neuralgia

Jillaroo

Jillaroo

Demented
Location
Mid North Coast NSW Australia
I have just been diagnosed with this after suffering from it for over 2 years, i finally have a Neurologist who is doing some tests to try and work out why i am still suffering, i have to have a MRI tuesday where i lay there for 75 minutes while they check the nerve in my head , spine and neck, my bad back will hate the concrete type bed i have to lay on. It has him concerned as i am sweating like mad on the right side where i have it, i put a new top on and 5 minutes later it is soaking on the right side, i am washing so many tops as i go through 2-3 each day. He has put me on Tegretol and i am finding they are knocking me around, i feel a bit like a Zombie, not looking forward to tomorrow i start taking 2 a day.
Went into town to get a blood test as the radiologist needs to know what my kidneys are like, my veins collapse she tried twice and no go, so i am going to the girl here where i live hopefully she can get some blood out.
Sat up due to the massive headache last night, it was a weird one, have to find out today if i can take pain killers while taking this Tegretol, so as you can see i am a misery guts.
Has anyone here had this or know of anyone who has.:coffeelaugh:
 

Sorry to hear this Jilleroo...I've not heard of it but my sister has taken tegretol for a long time. She had burning feeling in her tongue and went from dr to dr and nobody could find out why...finally they sent her to a dr who said it was the nerves in her tongue..could have been damaged so she put her on the tegretol..a high dose too and that helped her, she barely takes any now but it's been at least 20 yrs. that she took it.

I'm pretty sure she has taken a pain med once in awhile too along with the tegretol.

she is 52 now but this started in her 20's.
 
Apparently they find that the Tegretol which is basically for seizures works on Trigeminal Neuralgia as the nerves are involved, not sure how it works but certainly have had no relief from it yet, i don't have seizures or Bipolar myself.
 
Jillaroo, I'm sorry to hear you are dealing with so much pain & discomfort.
I've never heard of trigeminal neuralgia nor sweating on one side of the body (unilateral hyperhidrosis).
I did a little reading.
Your doctor is following standard medical procedure with you.
Tegretol is the first med they try because it's use is successful in 69% of patients.
There are several other meds they can have you try, since the Tegretol doesn't seem to be effective for you.
The MRI scan is a way they can possibly find out what's causing your problems.
I see there are many Trigeminal Neuralgia support groups. Like this one:
http://www.dailystrength.org/c/Trigeminal-Neuralgia/support-group
You could check to see if there's one in your area.
It may be comforting for you to speak to people who know exactly what you are going through.
I wish you well and much good luck through all this Jill.
 
Jilly.....I hope that after they do your MRI they'll know a lot more about your condition
and be able to treat you with the appropriate medication for your pain.
In the meantime, I hope your specialist can suggest something else to give you some relief now.
Keep us up to date and take care.:flowers:

 
Thanks guys for your nice thoughts, yes the MRI will be the one to show what's going on in my body, about time too. Lois that's interesting that the sweating on one side has a name i must read up on that as it does get me down and thanks for the link for the support group i will have a look :flowers:
 
Often used for neuralgia......don't put the dose up yet if you don't want to.
paracetamol won't harm......usually try tegretol before Neurontin here....
best of luck Jill.
 
Ina said:
Hi Viv, Sorry, I know you can't be around all the time. My bad.
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Morning/afternoon Ina!

If you do have these conversations in the middle of my night! Only joking....hope you are coping ok....and I am thinking of you both
 
Right now, I could throttle someone, but you never see these scumbags. We have to go to the police station tomorrow to get a case number, so we can file theift charges against some online fraud, that cost us just under $1500.00. Not what we need as we are covering a barial right now.p :soangry:
 
Some info for you Jill and so sorry that this has come upon you.


Trigeminal neuralgia, sometimes called tic douloureux, is an extremely painful condition that causes sudden, intense facial pain most often described as "stabbing" or "lightning-like." It is due to irritation of the trigeminal nerve, a cranial nerve that normally senses touch, pain, temperature, and pressure on the face. Usually, the irritation stems from pressure on the nerve from an abnormal blood vessel, but the problem can also be related to a tumor or, less commonly, to a rare type of stroke. As many as eight percent of multiple sclerosis patients develop trigeminal neuralgia due to the wearing away of part of the protective covering (myelin sheath) that insulates nerve fibers.

Neurontin, is an anti-seizure medication usually prescribed to treat epilepsy. It is one of a number of drugs that can reduce the sensitivity of the trigeminal nerve. If Neurontin is not working, I suggest that you request a trial of intranasal Nubain, a non-addictive narcotic painkiller with a low abuse potential. Nubain (nalbuphine hydrochloride) usually comes in injectable form but your physician can ask your pharmacist to make a nasal spray for you. Nubain is a safe drug that works well for some people with your condition. You also could try taking a calcium/magnesium supplement, which can help calm overactive nerves. In addition, I recommend that you try acupuncture and hypnosis, both of which can be helpful. Finally, you might experiment with an extract of lion's mane mushroom (Hericium erinaceus), which provides nerve growth factors.
Several surgical procedures are available for treating trigeminal neuralgia if all else fails, but I consider them drastic options to be considered only as last resorts. One procedure inactivates a section of the trigeminal nerve. It works initially in 99 percent of all cases, but up to 50 percent of patients eventually experience recurrences. Another type of surgery that provides long term relief to between 70 and 80 percent of patients involves repositioning the blood vessel that is pressing on the nerve, if that is the problem. However, this operation requires opening the skull and usually is recommended only for patients under the age of 65.
Andrew Weil, M.D.
 
Thanks very much for the info Gael, that Nubain & Neurontin interest me. I don't wish to have surgery that's a last resort as any type of surgery on the brain is risky and if i can sort this out without it i will be happy, as long as the intense sweating and pain stops i will be very happy
 
I am not sure that Nubain is available anywhere except US; I have never come across it in UK.
neurontin is readily available though; usually used as second line treatment..if Tegretol isn't effective.
 
YW Jill. That's from Dr. Andrew Weil a pioneer in the field of integrative medicine in the US and a respected and innovative source. I hope something in there can be of help. And you're in my prayers.:praying:
 
Jilly, hope all goes well with the MRI on Tuesday, I know that's going to be a challenge for you in itself. Sending good thoughts and prayers your way, will post if I come across anything that may be helpful to you. Take care.
 
YW Jill. That's from Dr. Andrew Weil a pioneer in the field of integrative medicine in the US and a respected and innovative source. I hope something in there can be of help. And you're in my prayers.
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Thanks Gael i appreciate it.

Jilly......These links may give you a bit more info on Neurontin and Nubain.....

here's a link to the Chemistwarehouse site re Neurontin....
http://www.chemistwarehouse.com.au/product.asp?id=6554

Another one re Gabapentin (Nubain) gives some info to check out....
http://www.pbs.gov.au/medicine/item/4591P-8505P
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Thanks Casper for the info will check it out

Jilly, hope all goes well with the MRI on Tuesday, I know that's going to be a challenge for you in itself. Sending good thoughts and prayers your way, will post if I come across anything that may be helpful to you. Take care.
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Thanks SB the one thing i am concerned about is my bad back and the hard bed i have to lay on for all that time

:flowers:
 
Hi Jilly.. so sorry to hear that you have that pain.. I have bad nerve pain in both my legs due to damaged nerves in the back of the knees..
my doc wouldn`t let me have that tegretol.. says its no good when you have blood pressure.. but I just take panamax I can`t take panadol,
strange isnt it it makes the pain worse and the only two things that help me are the panamax or aspro clears I take prob once a day..
A word of advice when you have the MRI I had one last year I don`t like it but ask the radiologist that is there that you want a mask to
cover your eyes its much better all round as you won`t feel claustrophobic.. and ask for a soft pillow behind your knees and ankles..
I only asked for a mask and wow it was so much better also they put the soft foamy cushion under my knees and rested my ankles on that ,
as you have to stay perfectly still so best of luck I`ll be thinking of you and also i`ll say a prayer for you .. you will be fine and I hope
they come up with some relief for you even a cure.. hugs and take care ..
 

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