TN

[nh_user_966306]

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

[nh_user_906933]

Hi Paul

It must be a very worrying time for your daughter and family to be confronted by TN especially at her age.

First rule of getting to know TN is RESEARCH, MORE RESEARCH and when you are almost done DO SOME MORE! If YOU don't keep abreast of what is/can/will happen then there aren't many out there doing it for You.

Explore every little snippett and read between the lines and get yourself a collection of sites and forums and the like all as reference material to start.

Unfortunately there is NO ONE FITS ALL solution out there and very little clinical experience in the profession despite so many people suffering world wide.

I started with a slight irritation to the skin to the left side of my face at eye level. An regular eye test for spectacles had the technician quite disturbed that my left eye would not blink or close. The local GP wrapped me up in the 'Bell's Palsy' bag and to wait for it to go away.

I changed to a different GP, I researched the treatments being offerred and fed him what I thought were sites worth investigating. Lickily for me he got on board and worked our way through to what was the best treatment (containment) level for MY condition. I use the word "MY" intentionally and you should be doing so with your daughter and HER treatment.

I ended  up LYRICA (nasty bit of kit but effective pain control of the trigemal nerves. 150, 150, 200Mg spread evenly for the waking hours)

ox carbamazipine (less side effects for me) at 600mg FOUR TIMES A DAY

Topped up with Oral Morphine as necessary for the really bad headaches.

That allowed me to function in a daze really but the alternative was nothing at all

I was lucky enough to have other issues and these brought about the complete removal of the PAROTID gland on the left side of my face. They took with it ALL of the nerves that passed through it and with them went my problems...well most of them.

I have to get going but I will get back and add what I can when I can.

NEVER GIVE UP AND "DEMAND" YOUR GP/SPECIALIST HAS THE SAME ATTITUDE

[nh_user_958976]

Paul, I am 67 years of age and I am a retired nurse and I was diagnosed with TN 7 weeks ago.  I understand what you and your daughter are going through.  The carbamazepine took my pain away initially but when the doctor increased the dose I could not tolerate the side effects, plus I was getting break through pain.  I was switched to gabapentin which I am tolerating much better, but we are gradually increasing because I still get break through pain.  I could not have worked during the past 7 weeks, I have tried to keep up with my normal activities and I have the support of good friends and a great husband.  Sorry I am going on and on ...what I am trying to say is that in the past couple of weeks it has gotten better.  I know what to expect when the meds are increased...first day I am hyper, second day my gait is really bad and the second and third day the tears come for no reason....then things settle down.  The people at the national TN association have been very helpful.  They told me and so has my doctor that I need to take my meds every 8 hours to control the pain.  I am currently on gabapentin 600 mg three times a day.  I am booked in two weeks for an MRI with dye and hopefully it will show thenerve compression.  If it does then I will go on the waiting list for MVD surgery.  Research this for your daughter and if you proceed with this have it done in a centre of excellence.  To me MVD is the only answer to this horrible disease.  But in the interim it takes time to find the right dosage of meds and to adjust to the side effects. And I personally have decided I will never have any of the destruction procedures which is all most neurologists and neurosurgeons can offer.

check out dr. Kaufmann in Winnipeg Canada and his website ....best site for info.  Stay in touch.

[nh_user_382081]

Hi,

I am sorry to hear of your daughter's problems. But, there is light at the end of the tunnel.

My story is long and involved, simply put, though, I had migraines since my teens (much older now, sadly) and about 10 - 12 years ago they changed, still on the left side of my head but seemed to be focussed in and around my eye. Coupled with a few othe seemingly related symptoms I thought it must Cluster headaches. Spoke to the GP, got nowhere so initially I just lived with the episodes of pain. Then about 9 - 10 years ago I had some major problems with my health following an ear infection, vertigo and a fall leading to neck and shoulder injuries. Still got nowhere with GP so changed surgeries about 3 years ago. Within six months I had my health issues dealt with. My frozen shoulder was fixed, my lady problems fixed and I thought 'great, back to normal'. However, all the aches and pains and feeling generally awful didn't go away, they got worse. So back to GP, blood tests and referral to Rheumatology and ultimately a diagnosis of 'something auto-immune' like Lupus but I don't tick all the right boxes. Needless to say the Eye headaches were put on the back burner, until they got worse.

Over the last 18 months the pain intensified, spread and was lasting much longer. I also started to get tingling, like a spiky-footed spider crawling across my cheek. I also got pain in my cheek, teeth, jaw and ears on both sides of my face including the other eye and stabs of pain in my scalp. I resorted to taking my husband's morphine and Tramadol with no effect. So in desperation after experiencing these episodes of ever worsening , more frequent, and longer lasting pains I went back to the GP. He straight away said it's TN. My existing medication was increased and I was started on Carbamazepine.

I have had to go really slowly in increasing the dose to an effective level due to the fact of my other medication also potentially causing liver problems. BUT, and here's the good news, I have had far fewer stabs of pain on a daily basis. AND, the horrendous episodes of eye pains are much shorter in over all duration, barely a day now rather than the 6 - 7 days previously, Success!! I still have a long way to go to be completely free of pain but there is an improvement. I currently take 700mg of carbamazepine a day in divided doses. What with the other health issues (aways something new and interesting on an almost weekly basis) and all the medication I take I am very fortunate not to have developed any serious side effects, except sleepiness, but that's a bonus in my case!

As Baudwalker says, research everything. and persist in your efforts to find a combination of medications that work best for your daughter. If she has difficulty with her studies until her medication has taken effect she may well be able to defer for a year. She should discuss this with her tutor/university. 

I wish her the best of luck in all regards.

[nh_user_963976]

Hello Paul,

As a parent and as a fellow th pwrson, I would tell you try whatever you can, this is the important part, the treatment benefits must out way 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 h ollistic 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 someone close to you that has HAD good out come from procedures and meds for this and if you can also get a second opinion or tests to localize the nerve root do you know 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.

[nh_user_963976]

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.

[nh_user_354451]

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

[nh_user_966306]

Hello

Thank you for your response and yes it is a very worrying time for the whole family. We will definitely be taking your advise and will read everything we can on the condition. It is also interesting to find out how many different ways this TN presents itself as our Daughter's was a toothache.

Thanks again all the best Paul

[nh_user_966306]

Hello Karen 

I'm not sure if my first reply came through to you or not as it cut off in mid sentence.

I was saying that our daughter is also on the carbamazinepine and Tramadol and also naproxen but this combination does not seem to be reaching her and she has a constant pain even if it is just low level, nothing seems to be able to give her any relief. The side effects of all this medication now seems to be kicking in and she is very sick and extremely tearful and constipated to add to it.

My wife and I accompanied her to the doctors the other day and to be honest as she is home from University and has had to re register as a temporary patient they seem to just want to increase the pain killers. We have however managed to get them to make a referral to a neurologist but they are only doing this due to her age.

Doctors tell me that this can't be bought on from stress, do you have any opinions on this as being a student nurse she is quite stressed about going into her final dissatation year and we were concerned that it could be this? We are currently looking into Reiki and possibly acupuncture we are really willing to try anything to bring her some relief and to get our daughter back.

Hope you stay in control of your pain and we thank you so much for the advise. All the best Paul 

[nh_user_343663]

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.

[nh_user_343663]

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.

[nh_user_343663]

sorry

Genny, I clicked on the wrong reply button.

[nh_user_966306]

Hello Susan

Thank you for responding it does sound like you have been through it for so long and glad the doctors have finally found the root to all your problems. Yes we are taking one day at a time and reading whatever we can find.

We are also trying Reiki tonight so will post a note later to let you know the effects if any of that route.

All the best to you Paul 

[nh_user_966306]

Hello Dawn

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

[nh_user_966306]

Hello Genny

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 

[nh_user_958976]

Paul check out www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscrip  this is the most complete info I have found and I have done lots of research.  I am currently in gabapentin 1800 taken over three times a day.  The side effects are getting better.  I know with each increase which I start with the evening dose that the next day, the first full day at the new dose that I will be hyper, then the next day the tears come, but now the third day is not so bad.  And no this is not brought on by stress...it is a physiological problem that can run in families.  A lady I know through knitting has two sisters and a mother who have this problem....they have all had the surgery and are fine now.  My doctor wanted to send me to a neurologist and we are near a good neurological centre but I refused....I want to be reviewed by a neurologist who specializes in TN.  Please check out the university of Pittsburg medical centre.  Your daughter needs the MRI with dye...fiesta, and have that sent to a TN specialist.  Good luck and stay in touch

[nh_user_945671]

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?

[nh_user_966306]

Hello Thank you for your reply. We have been referred as an emergency to a neurologist due to her young age so we are waiting to hear when this appointment will be.

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

[nh_user_966306]

hello

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 

 

[nh_user_966306]

Hello Karen

we have just received a Neorologist appointment but even as an emergency refer all the appointment is not until the end of September. We will take your advice with us and push for a MRI with dye.

Thanks again for this information it is much appreciated.

All the very best to you Paul