trigeminal neuralgia, seriously cant cope anymore, tips please

Hi Laura

I am so sorry for you I had TN for 15 & half years I went to pain management clinic They said I could have a Balloon Compression  I had it done in April 2013. I stayed in hospital for one day as an outpatient. I was free of pain for 2 & half years. It was heaven. Unfortunately it ha s come back 2 weeks ago. I am now on the waiting list I don't know how long I will have to wait but I will definitely have that procedure again. Meanwhile I am taking pregabalin and I am back to being dopey. So there are procedures out there.I wish you luck for the future 

Patricia

Hi laura I know how you feel, I've been there.  If you can touch your face I found a hot water bottle a small one with a soft cover like a towel wrapped around it is a little help and comforting. The anti-epileptic drugs are  good.

you have probable heard about the 2books that are a TN suffera's best friend.      Striking Back  was the first book and information source I had and it is a life savour.    Have you been back to your Gp.  If you are having trouble with pills and drinking use a bendy straw and put it right to the back of your mouth and use warm water not cold. If you can't eat then ligudisefood or if it's not letting you put food in your mouth then a mug of warm soup not hot and a straw. It will stop you feeling hungry and give you some energy to deal with your children.  At night sleep well propped up with pillows and if you can't sleep a good thing is to listen to story tapes or discs use a Walkman or the like.  I'm hoping that you are in less pain as your medication should be working now. 

How are you feeling today Laura. Do you have any family support to help you with the children.  What area of the country do you live in.  Get back to me I really would like to support you and help you with pain if I can.

Hi Laura,

I haven't read through all the replies below yet so forgive me if someone has mentioned this. My wife has had TN for 15 years or so. She took all the drugs to not much avail, she had surgery which relief lasted a year, then tried Lyrica, still no good, it took her clear out of the game. She has had great success with accupuncture. She has it every 6 weeks to 2 months.

I understand how you can feel desperate to find  some relief.  I was  diagnosed in 2014.  Calming things helps valerian root at night and I can say that medical marijuana helps a lot.  I am allergic to all the anti seizure meds they tried plus the way they make you feel.....depressed and as if you are only half there.  So I had to try other options, the pain is so intense but I did not want to go the route of Vicodine and such. My body is going through enough it does not need to try to process something so harsh.... and they really didn't help much.  Depending on the state you are in you should give it a try and try a vapor pipe.  It is easier and it can be light enough so you are still able to interact.   Botox also works some.  See your Neurologist and  they can use Botox and have your insurance cover it.  

Surgical options:  Gamma Knife and MVD ( micro vascular decompression).  You are not alone, I know it is hard... there are good days and bad days.  On the bad days you need to rest and on the good days enjoy them and your beautiful children.  I know it is hard and no on understands the kind of pain that goes with this condition... they say they do but they do not.  I do and all the others that have reported on this sight.  We understand.  Keep strong for yourself and your family.  Check with your doctors about other options such as the surgical options.  I wish you the very best.

 

I was finally diagnosed with TN back in may or June 2016. I had just thought I was losing my mind cause I got teeth removed, didn't help. I had an xray of my sinuses after being treated for sinus infection repeatedly, showed nothing. Doctors couldn't figure out what the hell was wrong with me. It was actually my sister one day said you know it sounds like this condition called TN and I looked it up and it was all my symptoms to the tee. I finally got a referral to a neurologist and was diagnosed that same day I saw him. But I got an MRI and and MRA which came back clean.

Because of the pain (I also have undifferentiated connective tissue disorder that I've been dealing with since I was 19 I'm now 25) I had been abusing dxm which is found in cough medicine it numbs the body and I just couldn't deal with all the pain even on tegretol. Well, December 8th idk what happened but the dxm caused me yo vividly hallucinate terrifying things and I went to the hospital. Apparently I was tachycardiac my heart rate was 140-150 resting and I didn't respond to treatment so I was transferred to a cardiac unit to be monitored and tested and they did an echocardiogram which I just finally got the results back and have trace mitral and tricuspid regurgitation which one of them is linked to autoimmunity. I woke up today at 530 in excruciating pain from the tn and its lasted all day its not as bad as this morning but its still definitely there.

I'm just so disheartened and hopeless from having all these health problems which a majority have no cure and will only worsen with time. If this is my life at 25 I'm scared to know what 35 will be like. I'm so damn sick of being sick and in pain 😕 and I'm new to the group btw, I needed some people who understand and I'm also relieved that im not the only one who wears scarves hoods and heating pads on their face btw lol

Thanks for reading..

Hi Laura my father had this problem like 7 years ago in 2009 he had this pain and was relying on the tablets until one day he met with a guy who had the same problem and he suggested to meet the neurologist Dr. Zaveri I personally took my dad and met him he suggested to do the Mri X-rays n all and finally said he has to go through the surgery . The two nerves were joining that was causing the severe pain which was isolated in the surgery than after its 2017 and till Now my father is having much relief the pain was gone . Yes the doctor also said the pain will cause again may be after 7-10 years but till now he's having no pain so I would recommend you to met him I don't know what your entire case is but trust me you should meet the neurologist .

Regards from India

Please don't let TN rule your life. However bad it gets, always think about your children. I can tell you that after 4 years of dealing with unspeakable pain and torture comma I finally found a neurologist who knew exactly what to do for me. Tegretol was too strong for me, so we went to select all, which is like the mama version of Tegretol. It took a couple of weeks for me too get through the initial upset stomach. I'm also taking 3200 milligrams of Gabapentin. My pain has gone from 200 plus episodes per day to about 30 a day. My life is worth living today. Dial down on the Tramadol to taking about today as I know that they take the edge off of our pain. You also may consider taking Xanax because of the fear of not knowing when your episodes are about to happen. This is a valid anxiety. Remember that you will have short-term memory issues due to the medications that are prescribed to you to relieve the horrible pain that you are going through. It's like I've Been Told, you have two choices. Take the magic pills. Or don't. My neurologist happens to be the best in his field. He is the dean of Neurology. He's not a big fan of surgical procedures, due to the fact that TN will come back. Most of these surgical procedures will leave you looking like you have had a stroke. You will have numbness on your face. I've seen it over and over again. I think the hardest thing about some of the surgical procedures is the extreme let down when it returns. Please stay in touch as I am sure we are all concerned about you as you have toddlers that need their mommy.

Hi Laura. I am a sufferer also. Know exactly how you feel. I was so depressed when I researched my diagnosis, given to me by an oral surgeon after my dentist pulled, for the the last time, a perfectly good tooth from my mouth.

I am happy to report all is not lost. A good neurologist and maybe a good neurosurgeon can help to make your pain go away.

I had a proceedure, vascular decompression of the trigeminal nerve [brain surgery] but it wasn't 100%. Pain came back after about three months but to a much lesser extent. I take 600mg twice a day of oxcarbazepine every day and that has rid me of the pain entirely these last two years. It took a while [3 mo.] to get used to the meds but now I don't even notice it.

My point is all is not lost. You needn't think you have resign yourself to the pain. There are solutions!

Hello Laura !

I feel your pain I'm 26 and been surrfering with TN since last Friday went to the dentist thinking it was a dental problem then ended up in A&E twice!

I got given Carbamazepine

They help I take around 4/5 a day I've been told no pain killer will work not even tramadol or morphine

I'm just using a heat pack and sometimes ice

Also I brush my teeth and that sometimes helps with the pain

Good luck Laura

Louise xx

laura19209,

I am really sorry to hear about all the trouble you are going through, I will be praying for you.

These are the meds I take (3) 300 capsule of Gabapentin and (1) 150 Oxcarbanazapine every nite b4 be and sometime in the daytime take as needed, if I feel any pain in my gums I take my cocktail. Tegretal does not for TN. 

If you elect to have MVD surgery be sure to ask you Neurologist and I mean Neurologist about other choices like the ones other forum patients are discussing, OK.

Also, be sure to ask you Neurologist about all the side effects  MVD, and the other choices if you have children, don't have MVD.

Read my story and others in the oldest pages on this forum.

We all need to keep praying for all TN suffers.

God Bless us and keep us and give us peace.

Hi Laura,

I was suffering from TN since last 4 years. At first it was supposed to be dental problem but later on it was confirmed that it is TN. I took tagrital, liofen and other allopathy doses but after some time it stopped working. so i took homeopathy as well but  after a stage that too cant cure it completly. Then i went for accupuncture treatment. it worked for me. now i am painless . this treatment tooka round 5-6 months. i have to go daily to dr to take treatment but it cured me. I will suggest you to take accupuncture treatment as a patient i can understand how life becomes hell due to the pain.   plase check  " Dr yogesh Walhe's Shree accupuncture treatment center , Pune , India". plz dont  think i am doing advertisement, its just that i have also gone through that pain and i understand how difficult it is to live with this disease.