trigeminal neuralgia, seriously cant cope anymore, tips please

Hi samblandford

Hope you find some more relife as in comeing future

My journey with tn type2 just started , 3 weeks ago iam 32 and so scared what my future is going to be like as mine started early on a young age , mind me asking how old was you wen this monster disease came?

Hi Ibrahim - I just read your post and thought I would respond.  I was diagnosed with TN in May 2006 and have been suffering with this horrific disease for many years.  Since I have been "through the mill" with this disease, I would be pleased to answer any questions you may have.  Try to hang in there - I know that it's any easy comment to make but am also aware of the great suffering one has to endure.

Hi marlene

Thank you very much for your help

Hope someone would have a magic pill for this and we all find relife one day 🌹

Ive had a head injury and from that it triggered this horrific disease,

Iam haveing constant acheing and burning sensetion all around left side most on jaw and tempel

Thats alot of years well its going to eat alot of my years aswell , mind me asking how old was you wen you had this ? And what kind of relife did you get from meds or treatments ? Have you tryed any surgery?

Iam from london where you from ?

Hi Ibrahim - I remember my very first appointment with a pain specialist and he told me that there is no cure for TN.  The answer here is meds to try and lessen the pain.  My pain is constant - never goes away.  The right side of my face including the jaw area, face and temple areas are affected.  I have different pain sensations and burning is one of them.  Have you experienced any electrical shocks in your jaw area? These come without any warning and last for only a few seconds.  I am now 61 years old so the TN pain started when I was 55 or 56.  In Nov of 2009 I had brain surgery done.  The surgery is called micro vascular decompression.  Unfortunately, the surgery was unsuccessful.  I know of three other people who had this surgery and are now living pain-free lives.  I have been on many different pain medications as well as anti-seizure meds.  I had bad reactions to the anti-seizure meds so cannot take them.  Of all the pain meds I have tried there is only one that will give me relief.  The medication is call furinol.  I live in Canada so am not sure if this med is offered outside the country.  How old are you?  I am just curious.  Also, I have tried two different teatments.  The first treatment was called nerve blocks.  I had 5 of these done and it only increased my pain more.  The second treatment was botox injections.  I had 16 injections done to the right side of my face and was sick in bed for a week.  I did try the two options that were available to me but just made me worse.  I hope I have been some help to you.  There is a ton of information on the internet that is very useful.  Please contact me at any time with your questions/concerns,  I truly hope that my story will help you.  Wishing you many good days.

Hi marlene

Thank you 😊

Iam 32 still young to have this but i think iam one of the unlucky ones , my pain started after a head injury , 3 weeks ago tge pain came then went for a week now its just constant ache around my left ear and tempel and cheek my jaw is fine no pain , havent had no electric shock type of pain and hope i wont this has put me down , i was going gym doing sports and working it has made me stuck indoors feel bad to go around people , my familys upset its such a bad disease ruined my life 🙁🙁

Iam going to a private nero tommarow to see what he can do , hope i get some sort of relife

Hi Ibrahim - I am very happy to know that you are seeing a neuro tomorrow - hopefully he will be able to prescribe some meds that will help relieve the pain you are experiencing.  I have been taking a pain med now since 2006 and I have to take this pain med every day in order to have some quality of life.  If I did not have any pain med, I fear what would happen to me.  I had to leave my place of employment in June of 2009 because it was impossible for me to work.  It was one of the hardest things in my life that I had to do because I loved my job so much.  If you don't mind, I would like to ask you where you live.  I do know that different countries have different methods of treating chronic pain.  All the best for tomorrow and I would be very happy to know what the neuro has to say and if he has put you on any pain med for pain relief.

Hi marlene

I live in london uk , i dont know what kind of trearments available but i heard becouse i have tn type2 i would be on meds , pain has gotten worse today i cannot eat or sleep , i dont think i will able to work if i dont feel better i was s carpenter have left my job because of this , its so bad i feel like crying 😭 , This had ruined my life

I feel alone traped in my body how am i going to cope with this for so many years in front of me 😭

Hi Ibrahim - I certainly know how the pain level can change from day to day.  I have had too many of these horrific pain levels.  Please do not give up any hope.  I am quite sure that the neuro you are seeing will prescribe a pain med or two which will definately help with your pain.  Always remember that if what he gives you may not help (I do hope they will) but if this is the case he will try you on something different.  As I mentioned before, it took quite a long time for me to get the correct pain med.  Also remember what may help one person does not necessarily mean that it will help you.  I call this a trial and error period and eventually you will get the correct pain med.  I look forward to hearng from you after your neuro appointment and what he has to say.  I will be thinking about you.  Best wishes for tomorrow.  If your parents would like to read my posts that would be great.  I know they are very concerned and worried about you but remember there is a light at the end of the tunnel.

Thank you 😊 i feel but more in control of the pain now relaxing helps ease of the pain , iam originally from turkey so I researched there ways of cureing or minimise the pain and came across some dr who are more professional she say in alot of TN cases the most problem is that dentisis couse this pain by wrong works done could be years back so she does the all nerve route back to a normal state and patient get TN free

Ibrahim - sounds like you received an answer from your research.  Before I had my surgery, I had an appointment with a brain specialist who did many surgeries like the one I had  Perhaps, in my case, the nerve damage was already there.  Not sure of this but only taking a guess here.  Be sure to let me know how you got along with your appointment.

Hi marlene

I havent slept yet have this crazyy ache on my tempel wont leav me alone to sleep 😴

Iam doing all the resarch i can , i dont want to go on meds buy find any natural if they say eat 500 appels a day then takeing meds ill eat 600 appels just in case 😂

I have 5 hours to see the nero hopefully he gives me some good way out of the pain

I would deffenently let you know how it gos iam going to start a dairy of the pains iam haveing and what takes it away and wat makes it worst becouse its TN2 i have constant pain some days for an hour or so i would feel great but then after it would come and say hello then wont go away

Its like makeing friends with a monster thats riping me appart but iam sure we would beat him one day 😊

How are you feeling ?

Hi Ibrahim - like you, I have had many sleepless nights.  Yesterday was an okay day - ended up resting for most of the day.  If you can go the natural way I hope this works for you.  Keeping a journal is an excellent idea - a very good way of tracking your pain.  Anxious to hear back from you regarding your neuro appointment.  Best wishes.

Hi marlene

Just a update nero said i migth have ATN type 2 TN or could be anxiety realted he wasent sure what it is , iam sure its not anxiety this is real and symptoms are ATN, he gave me some meds aplyipmine i think its called i felt like a zombie using them , going to see my gp tommarow to try new meds , but before using them ill be trying some natural supplements and oils see if i can get relife ,

Last couple of day i didint take any meds just normal painkillers and relaxing meditation i was tottaly pain free , then just now it moved side it was on my left now its on my rigth just a warm sensetion and tingling nerves around my face , its so annoying not painfull ,

Someone told me about tiger bam ordered it try to see if i can get some relife 😊

Hi Ibrahim - I would see another neuro for a second opinion.  You are entitled to see another doctor if you have questions about your first diagnosis. Perhaps your family doctor can help,  It was my family physician who diagnosed me. What is aplyipmine?  Never heard of this med.  Is it a pain med, anti-seizure or something else?  Just curious.

if you have children try all forms of other procedures b4 u go with MVD, this surgery is very invasive and neurosurgeons love practicing on people.

Just my opinions from me having have had this procedure.

please seek out alterntive if you are diagnosed with TN.

Surgical Treatments:

MIcrovadscular Decompression (MVD)

Balloon Compression

Glycerol Injection

Radiofrequency Lesioning

Radiosurgery (GammaKnife, CyberKnife, etc.)

Complementqary and alternative Medications (CAM)

As in traditional medical treatments, the effectiveness of all CAM treatments depends on several things, including the person's state of health, and the skill and knowledge of the practioner. Every person responds differently to treatments and even though most of these remedies are non-invasivem they still may have potential risk and complications.

Acupuncture,

Biofeedback,

Capsaicin aka peppers,

Homeopathy,

Nutritional therapy,

Electrical Nerve Stimulation

TENS (Transcutaneous Electrical Nerve Stimulation),

Upper Cervical Chiropractic (injection in the carvix

and it works according to a video on utube that is recorded

by a nurse) The nurse was in pain from TN and one of the doctors she worked with asked her if he could do this form of injection and she said yes and afterwards it work on her for a long period of time.

Vitamin B-12 injections,

Vitamin Therapy,

Botox

God Bless Us And Keep Us And give Us peace.

Thank you so so much for the advce so helpful

So much helpful information of treatments 😊😊😊🙏🙏🙏

I dont have children, but i dont think ill do mvd up until i reach on 50s as last choice iam on my early 30 ,

Going to try cbd hemp oil , iam

Not on medication at the moment so trying any surce of pain relife naturly would try all the natural treatments from

The list you have sent first before doing all the other complex treatments 😊

Iam not on any meds at the moment , can nearly deal with pain as min is type 2 TN other words ATN

Hi Ibrahim - I haven't heard from you in awhile.  Glad to read your post to stupid1.  All the best to you with natural treatments.

Hi marlene

Sorry i thougth i wrote to you aswell iam loseing my mind , this pains took all over me , ive had new problems occurred, now i have shooting pains behind my skulp doc said it could be occipital nuraliga 😔 I have TN and ON to deal with now , my gp is not helping , doesnt want to send me to a specialist untill i try meds , i cannot eat have shower or anything this has put me so down i cannot get relife to atlest get out of bed

Hi Ibrahim - feel so bad for what you are going through.  You are very much entitled to a second opinion from another doctor.  I would definately pursue this.  Your GP is of no help to you.  Pleasee get a second opinion and request a referral to a pain specialist.  This may take a little time but in the end it will be well worth it.  After my experiences, I did have long waiting times.  Are you on a pain med?  If not, your doctor should know better and prescrible something for pain at least to give you some relief.  i would truly appreciate receing a response from you - I am anxious to know if the pain is still the same and also if you are on a pain med.  If I did not have a pain med, I know I would not make it.

 

They gave me a pain med sertraline 50g

Today , iam going to arrange self found pain clinic tommarow this , gp's in uk dont help , she said i should use these tablets for 4 wewks then go back to her,

My face is in dull pain now i have like nerves on my cheek flickering , when i clemch my theef its moveing i can feel the nerve kind of putting heat , i feel so depressed and scared , havent et all day pills made me drunk its changed my personality, iam haveing a very bad day today

H iIbrehim - I checked your med and you are on an anti-depressant med.  Goggle WebMd - it is an excellent site and will give you all the details about this med you are taking.  I just cannot believe that you are not on a pain med to help with pain relief.  I think you told me you were from Turkey and now live in the UK.  My head is spinning here - can't believe you are not on a pain med and the pill you are on now, sure sounds like it is too much of a high dose for you.  keep in contact. 

Hi Ibrahim, I' agree with Marlene. She's a great help to everyone.on this website.Has the doctor told that you have Atypical Trigeminal,neuralgia, or Classic Trigeminal Nueralgia - both are differant. I have had this thing for over 20 years and do not have any ache, Mine is Classic TN with the stabbing pain and after-burn type,  so you seem to have the Atypical which involves this awful ache that you have.. As Marlene says , you should be on better medication . Your doctor is one of the many who do not understand this condition. You are doing the right thing by getting a second opinion. Please let us know how you get on with the clinic and good luck