TN
Posted , 10 users are following.
Hello, my beautiful daughter is just 20 years old and a student nurse and she has just been diagnosed with TN. We are feeling like our world is falling apart seeing her in so much pain and not being able to do anything to help her. My wife has been reading all your great help and advise and we are hoping that there is light at the end of the dark tunnel that is currently in front of us. We have purchased a TENS machine for her and she said that this does give some relief although only for a very short time. As we are only one week in with the diagnosis nothing seems to be controlling the pain apart from the morphine that she was given when we ended up at hospital one evening. This was a one off dose and they sent us home with a strong pain killers.
She has been put on carbamazepine and from initially starting her on one tablet a day we are now at one tablet twice a day which we understand that you have to build up gradually with this medication but the worry is all the other pain relief that she is having to take to get through the day.
We wondered if anyone has tried Reiki healing? Our daughter has a friend who is a Reiki healer and they have offered to try some healing on her so just wondered if anyone has been down that route and what we could expect.
We had never heard of this condition but can't believe how many people are effected by this on a daily basis, they have now said that they will refer her to a Neurologist due to her age.
Thank you for your advise and any further help anyone can offer.
All the best Paul
0 likes, 34 replies
dawn18375 paul49262
Posted
Hello Paul,
As a parent and as a fellow tn person, I would tell you try whatever you can, this is the important part, the treatment
BENEFITS MUST OUTWAY THE RISKS.
Repeat that in everything you learn online schooling, doctors, pain management etc. If the low doses are working and you have read up on all their pluses and minuses, try hollistic and keep in mind this is a nerve problem. Nerves do not know that stretching, hot rocks and meds you put into the digestive track are for them. Some of the best advice I had was, contact Mayo clinic for trigeminal neuralgia and ask for:
1 someone close to you that 2 has HAD good out come from procedures and meds for this and if you can also 3 get a second opinion or 4 tests to LOCALIZE THE NERVE ROOT so you know the best way to treat & what's to come. Again as a parent, protect her, ask all the questions until your satisfied and stay strong and helpful, she's going to need help & understanding to all she's experiencing. All my best Paul, I'll keep you in my prayers.
paul49262 dawn18375
Posted
Thank you for the reply, yes we are doing our best to stay strong for her and we are the sort of parents that question everything and will research whatever we can find. It does appear that there is light at the end of the tunnel but just now it feels like we have a long way to go.
Thank you we appreciate you keeping us in your prayers and wish you well.
All the best Paul
genny25800 paul49262
Posted
i know how your daughter feels and when your family can't help you is more painful than ever one neurologist you want to jump of the bridge my doctor he should have that to you but is how painful it is i know 2 yrs of pain 30 doctors in out of hospitals al kind different medications doctors i am older lady i had a stroke but the doctors in san francisco calif got me the right medications 150 oxcarbarbazepine 150mg aspirin 81 mg carbamazepine 200mg aslo vitamins d, e, c, b, omega 3 69 exercise if she can do it i have no more pain to me this micrale i want to help your daughter so much i do not want anybody to go through this pain
please tell me how she is doing
Valkyrie genny25800
Posted
Hello Paul, I am constantly shocked that many Gp's are reluctant to refer patients to a Neurologist as a Neurologist is essential in giving relief from pain with the horrible and diverse condition. I beleive it will probably be necessary for you to read up yourself as well in order to understand what they are telling you so that you don't just go along with things the doctors say without having enough knowledge to ask the right questions. I was all lined up to have an MVD when one of my children mentioned Gamma Knife. This is just one more possibility for you to research. There are many drugs available and after a while a lot of them settle down in the system and life can continue. However, you must never stop asking questions. I use a combination of Tegretol and Lyrica to control my pain which, incidentally has diminished to the point where I am starting to lower the amount I take. This miracle has occurred after my Gamma Knife Operation last year. Be careful of the medications, they are very strong and you must be precise and methodical. I take 850mg Tegretol and 350 Lyrica and I am decreasing at the rate of 25mg per week starting with the Lyrica. Please stay on the forum and also look out for other forums on the Net. Information is everything. I have not tried Reiki.
Valkyrie
Posted
Genny, I clicked on the wrong reply button.
paul49262 genny25800
Posted
Thank you for your reply by letting us know what helps for you is helpful to us so we can quiz the doctors on what they can try.
We are praying for a miracle as well and to get our daughter back.
Thank you again and all the best Paul
Valkyrie paul49262
Posted
Hello Paul, I am constantly shocked that many Gp's are reluctant to refer patients to a Neurologist as a Neurologist is essential in giving relief from pain with the horrible and diverse condition. I beleive it will probably be necessary for you to read up yourself as well in order to understand what they are telling you so that you don't just go along with things the doctors say without having enough knowledge to ask the right questions. I was all lined up to have an MVD when one of my children mentioned Gamma Knife. This is just one more possibility for you to research. There are many drugs available and after a while a lot of them settle down in the system and life can continue. However, you must never stop asking questions. I use a combination of Tegretol and Lyrica to control my pain which, incidentally has diminished to the point where I am starting to lower the amount I take. This miracle has occurred after my Gamma Knife Operation last year. Be careful of the medications, they are very strong and you must be precise and methodical. I take 850mg Tegretol and 350 Lyrica and I am decreasing at the rate of 25mg per week starting with the Lyrica. Please stay on the forum and also look out for other forums on the Net. Information is everything. I have not tried Reiki.
paul49262 Valkyrie
Posted
Thank you for your reply, yes we are the type of people to question everything and research so we will continue to do this.
My Daughter went for Reiki last night and she came out very relaxed the most we have seen her since this awful condition started and she was actually smiling. Our Daughter went on to have to have a full night sleep and woke this morning with a low level pain that she said was very manageable. We are not saying this is a cure by any means but it has obviously relaxed her enough to get a full nights sleep. Thank Goodness
next Reiki session booked for next week.
All the best Paul
saaz79347 paul49262
Posted
Paul I'm sorry to hear that your child is going through this. I suffered for 1.5 years before opting for mvd surgery. For me , the only medicine that helped with the pain somewhat was Tegretol. I had to go uptp 800 mg per day after starting with 200 in just 3 months. I tried acupuncture and it didn't help at all. This condition is caused by the tn nerve being pinched or touched by a blood vessel or worse the basilar artery as was in my case. I have posted at length on this site about my procedure and the complications but I can tell you that mvd is the right procedure for most patients. Gamma knife, rhizotomy, glycerol injections etc are only a temporary fix and most patients return with pain in a year. consult a surgeon who you know has done a few MVD procedures so they have the right Experience. Have they done an mri of the base of the brain for your daughter and does it show an offending blood vessel?
paul49262 saaz79347
Posted
As we are just one week in from the diagnosis this is still all very early days for us but thank you for the information and we will be researching everything possible to bring her some relief.
All the very best to you Paul
karen36710 paul49262
Posted
paul and anyone else reading this my gabapentin was just upped to 2700 mg a day. At 1800 I was still getting break through pain, some of it pretty bad and the pain was getting more constant. I would like to know how much ...how high...other people's dosages are?
paul49262 karen36710
Posted
Our Daughter has been put on Carmazepine which for her seemed to take its time to take effect but seems to be working and she controls the pain quite effectively now along with Tramadol and Naproxen. Sorry we cannot help but hope you get your pain under control soon.
All the very best to you Paul
susan33651 karen36710
Posted
Are you taking anything else, such as Carbamazepine, to reduce the number and frequency of nerve impulses? If so you could check with your Neurologist or GP to see whether it can be increased. It may be possible to add another analgesic (pain killer).
Best wishes.
karen36710 susan33651
Posted
susan33651 karen36710
Posted
Hi,
It would seem that a combination of pain killers for neuropathic pain, such as Amitriptyline or Gabapentin and their ilk and an anticonvulsant like Carbamazepine work best in dealing with TN. Personally I take 800mg Carbamazepine in divided doses 4 times a day on the dot (I set my alarm, best advice I've had!). I also take Amitriptyline 50mg at night with an extra 20mg in the day if needed. So far I have been really lucky in avoiding side effects, with the exception of sleepiness, but that's absolutely fine - I am happy to sleep!! After more than twenty years of lacking sleep 6 hours a night is luxury!
To be honest I would try the low dose of Carbamazepine, it will reduce the number of nerve impulses and then hopefully you could, in time, reduce your dose of Gabapentin. Finding the compromise is trial and error.
Good luck.
karen36710 susan33651
Posted
i will keep you posted...thanks again