I have battling this TN for over a year now and it has been awful, no let me rephrase that terrible the worst time of life!!!! I am 38 years old and battle everyday of my life with extreme pain which I am sure everyone on here knows all to well.
My frustration this week was elevated when I finally got to see a nuero surgeon about discussing a plan on moving forward with surgery I am wanting to have MVD done. After discussing what my symptoms are and what I am taking for helping with the pain or should I say not helping with the pain, Since seeing my Neurologist and he has given me two medications Tegretol 200mg twice a day and Topamax 100mg twice a day and I have had no relief what so ever from any of this. I have been given pain meds and even Stronger ones in the ER to no relief the surgeon says to me that surgery may not work for me because I may be a mixed bag because I have not responded to any of the medication to date. This immediately made me mad and very upset. I felt like I was being told that no matter what I am going to suffer in pain:( now he said because of my age and that I have so many symptoms and that I get no relief from any treatment so far is why he is questioning if we should move forward with surgery. He did tell me the decision largely lays on me and of course I want to be out of pain but he says that I will only be out the shocking pain in head and that the boring nerve pain will always be there. Is this true?? I am looking for any advice or support anyone can give me. I am hanging on by a very thin thread here this disease has completely worn me down and I want to be done with it and the news I received this week did not help my mental state at all:( I just feel like the doctors have told me that I don't have much going for me because my body is not responding to medication, when I would give anything to be out this horrific pain. I scream and cry every day of my life it is so not fair I just want my life back.
Hi Collette
I think you need a doctor that is very experienced with TN. Is yours? I had 2 MVD’s & my 1st lasted @31/2 years but wasn’t easy at first. Still needed meds. My 2nd surgeon was very experienced & a much better post surgery result. It’s been 9 months & I am very optimistic & pain free, do you have TN1 or2?
I can relate to your pain & please try to be optimistic. It might just take sometime to find your solution. I had 2 surgeries that didn’t help before I was diagnosed with TN.
Linda
Hi Collette, Sorry to tell you that in my very humble opinion you should see another doctor/neuro. I had every kind of TN pain you can imagine, suffered for years in a very big way the same as you describe, then had MVD surgery which was 100% successful and was pain free after that for nearly 8 years, which to me will always be the best thing that ever happened to me. Firstly, your Tegretol is a very low dose, and maybe if the doctor would increase that, then you wouldn't need all the other medications. For TN, a total of 400mg per day is very low, and I have frequently and for long periods used much more than double that amount - with no other drugs - and I think plenty of others here with severe form of TN have had the same. It can take up to 3 weeks on a higher dose for you to actually get relief from Tegretol, so you need to persevere, but in the right dosage it DOES work - maybe not all the time, but it will improve your life a LOT when you get the dosage right - but watch out for possible side effects, especially sleepiness, some brain fog, weight gain etc. I suggest you then talk to a doctor with TN experience and discuss dosage. Secondly, I think the MVD is the right decision, WITH THE RIGHT SURGEON - who MUST be very experienced in MVD specifically. Also, the right surgeon would know that many compressions of the trigeminal nerve are NOT visible on MRI - but they are still there. Best advice: RESEARCH YOUR SURGEON and ask the questions. Sadly, ignorance on TN is rife in the medical profession, so it's really crucial that you only see TN experienced medics. All the best.
Reading your post has left me feeling sad that another person suffers just as I do. I have both types of TN pain, with my official diagnosis from the neurologists at Mayo being trigeminal neuropathy (permanent nerve damage) and AD. I have taken just about every drug out there, including methadone, but have very little relief. Yes, it is depressing…but I refuse to yield my life to this pain. I still work full time, although it is a real struggle. My wife wants me to consider disability, but I just can’t…at least not yet.
Is there hope for you? Of course there is. The pain tries to take over your life, but you can find relief. In my case, my doctor continues to mix and match drugs and when nothing else is working, I just grit my teeth and make it through the day and take the OxyContin and oxycodone in the evening. Your doctor will do the same and there will be times when the pain is controlled. It may never go away completely, but you will learn to manage it.
In my case, besides two MVD’s and three rhizotomies, the last MRI showed a cyst in my pineal gland in that same area also compressing the nerve. The neuro surgeon walked in and said, “no way!” so after several visits with the pain specialist, I just decided to take the basic drugs so I could keep working. I am rarely without pain and some shocks nearly drive me to my knees, but I refuse to let the pain win. With TN, you can never give up or you lose. All of us give in a little and adjust our lives in varying degrees. That is a concession we need to make. Some people have higher tolerances for pain (my neurosurgeon says I certainly do). I just want to encourage you to keep fighting the pain. Make the adjustments you have to make, but never give up. Someday they will find a drug or a new procedure to end the pain. That hope keeps all of us going. I certainly wish you the very best. I have been where you are. I have made it many years with this pain, with many more still ahead of me. God bless. You will be in my prayers.
First off, I agree with maur, your tegretol dose is low. A therapeutic dose can be found between 600-800 mg usually. Regular tegretol didn’t work well for me initially so we switched to the extended release form " tegretol CR. tegretol needs time to build in your system to be effective, you need to be on it for at least 3-6 weeks to make an accurate assessment if it works or not, slowly increasing your dose with your neuros guidance.
I had MVD in April for my primarily type 2 TN ( constant burning, boring pain ) and it was successful in relieving those features as well as the TN 1 ( electric shock) type pain.
No compressions ever showed on any of my MRIs, and 3 were found during my surgery!
That link gave me a lot of hope because it pretty much described my experience. I will continue my research I am going in for a 3d MRI this week so he can get a better image that he wants and then we are going to have another discussion but I am going to stick with my gut and go forth with surgery.
Thank you for you response and support. I am always fighting the battle everyday yes some days are worse then others. I appreciate hearing from others it does give me hope and that is what I need. I am going in to see my neurologist to discuss my medications and they are talking about referring me to a pain clinic to help me cope with pain. Thank you for encouragement and I will keep my head up as much as I can.
Collette
Bob Homerin said:
Hello, Reading your post has left me feeling sad that another person suffers just as I do. I have both types of TN pain, with my official diagnosis from the neurologists at Mayo being trigeminal neuropathy (permanent nerve damage) and AD. I have taken just about every drug out there, including methadone, but have very little relief. Yes, it is depressing...but I refuse to yield my life to this pain. I still work full time, although it is a real struggle. My wife wants me to consider disability, but I just can't...at least not yet.
Is there hope for you? Of course there is. The pain tries to take over your life, but you can find relief. In my case, my doctor continues to mix and match drugs and when nothing else is working, I just grit my teeth and make it through the day and take the OxyContin and oxycodone in the evening. Your doctor will do the same and there will be times when the pain is controlled. It may never go away completely, but you will learn to manage it.
In my case, besides two MVD's and three rhizotomies, the last MRI showed a cyst in my pineal gland in that same area also compressing the nerve. The neuro surgeon walked in and said, "no way!" so after several visits with the pain specialist, I just decided to take the basic drugs so I could keep working. I am rarely without pain and some shocks nearly drive me to my knees, but I refuse to let the pain win. With TN, you can never give up or you lose. All of us give in a little and adjust our lives in varying degrees. That is a concession we need to make. Some people have higher tolerances for pain (my neurosurgeon says I certainly do). I just want to encourage you to keep fighting the pain. Make the adjustments you have to make, but never give up. Someday they will find a drug or a new procedure to end the pain. That hope keeps all of us going. I certainly wish you the very best. I have been where you are. I have made it many years with this pain, with many more still ahead of me. God bless. You will be in my prayers.
Thank you Linda I appreciate your words I do have faith in my surgeon he is the best in Oregon and just became the President of of Nuero Surgeon of the World in July. I have researched him a lot. I just did not like his response of your not responding to medication so I don't think surgery will help you... But I will keep trying.
Thank you
Collette
Linda Faye said:
Hi Collette I think you need a doctor that is very experienced with TN. Is yours? I had 2 MVD's & my 1st lasted @31/2 years but wasn't easy at first. Still needed meds. My 2nd surgeon was very experienced & a much better post surgery result. It's been 9 months & I am very optimistic & pain free, do you have TN1 or2? I can relate to your pain & please try to be optimistic. It might just take sometime to find your solution. I had 2 surgeries that didn't help before I was diagnosed with TN. Linda
Thank you for support. I know it is uphill battle and I am trying to be optimistic it is hard hen the pain is so bad. I hope to find that soloution soon.
Thanks again,
Collette
Maur said:
Hi Collette, Sorry to tell you that in my very humble opinion you should see another doctor/neuro. I had every kind of TN pain you can imagine, suffered for years in a very big way the same as you describe, then had MVD surgery which was 100% successful and was pain free after that for nearly 8 years, which to me will always be the best thing that ever happened to me. Firstly, your Tegretol is a very low dose, and maybe if the doctor would increase that, then you wouldn't need all the other medications. For TN, a total of 400mg per day is very low, and I have frequently and for long periods used much more than double that amount - with no other drugs - and I think plenty of others here with severe form of TN have had the same. It can take up to 3 weeks on a higher dose for you to actually get relief from Tegretol, so you need to persevere, but in the right dosage it DOES work - maybe not all the time, but it will improve your life a LOT when you get the dosage right - but watch out for possible side effects, especially sleepiness, some brain fog, weight gain etc. I suggest you then talk to a doctor with TN experience and discuss dosage. Secondly, I think the MVD is the right decision, WITH THE RIGHT SURGEON - who MUST be very experienced in MVD specifically. Also, the right surgeon would know that many compressions of the trigeminal nerve are NOT visible on MRI - but they are still there. Best advice: RESEARCH YOUR SURGEON and ask the questions. Sadly, ignorance on TN is rife in the medical profession, so it's really crucial that you only see TN experienced medics. All the best.
Collette, I feel for you, really I do. The human will is an incredibly powerful tool for TN survivors, and I find what strengthens that will is loved ones, particularly those that need you, because their will somehow joins to your will and makes your will to get through it all so much stronger. There is a LOT more hope for TN patients these days than back when I first started on this TN journey, and if you've decided to go ahead with your MVD [with an EXPERIENCED and SUCCESSFUL TN surgeon] then you have much to hope for and look forward to. Also, if you quickly get your dosage of your med sorted out, then in a very short time you could find relief, or some relief, enough so that you can breathe again and believe you will make it through. There is nothing more blissful than taking your first pain free breath after suffering prolonged pain, so hang in there and take charge of your TN, strengthen your courage and your will to see you through. Best of luck, and do post your progress here for others like yourself as we all learn from each other.
collette74 said:
Hi Maur,
Thank you for support. I know it is uphill battle and I am trying to be optimistic it is hard hen the pain is so bad. I hope to find that soloution soon.
Thanks again,
Collette
Maur said:
Hi Collette, Sorry to tell you that in my very humble opinion you should see another doctor/neuro. I had every kind of TN pain you can imagine, suffered for years in a very big way the same as you describe, then had MVD surgery which was 100% successful and was pain free after that for nearly 8 years, which to me will always be the best thing that ever happened to me. Firstly, your Tegretol is a very low dose, and maybe if the doctor would increase that, then you wouldn't need all the other medications. For TN, a total of 400mg per day is very low, and I have frequently and for long periods used much more than double that amount - with no other drugs - and I think plenty of others here with severe form of TN have had the same. It can take up to 3 weeks on a higher dose for you to actually get relief from Tegretol, so you need to persevere, but in the right dosage it DOES work - maybe not all the time, but it will improve your life a LOT when you get the dosage right - but watch out for possible side effects, especially sleepiness, some brain fog, weight gain etc. I suggest you then talk to a doctor with TN experience and discuss dosage. Secondly, I think the MVD is the right decision, WITH THE RIGHT SURGEON - who MUST be very experienced in MVD specifically. Also, the right surgeon would know that many compressions of the trigeminal nerve are NOT visible on MRI - but they are still there. Best advice: RESEARCH YOUR SURGEON and ask the questions. Sadly, ignorance on TN is rife in the medical profession, so it's really crucial that you only see TN experienced medics. All the best.
Hi Collette–
All of our forum friends are so supportive and insightful. With shared experiences, there is so much help here! I am 40, type 1 TN for 5 yrs, 3 of those yrs were medicated. Then I decided to take my life back from pain and a foggy brain! My MVD was June 12th. I had 2 compressions. A “Clear” MRI. As my TN Surgeon said- the compressions are blood vessels, meaning most doctors will say that the MRI is clear, if there are no tumors, etc. I urge you to speak at length with your current Dr. Make sure that he does MVD’s on a weekly basis. There are so many variables, that only a Dr that frequently does this can troubleshoot any surprises. I live in FL, went to MI to see Dr Casey. I am currently in the 75% , medication-free statistic! However long it lasts, I am grateful for!!
Good luck! Keep us posted!
Tiffanie
Hi Collette–
All of our forum friends are so supportive and insightful. With shared experiences, there is so much help here! I am 40, type 1 TN for 5 yrs, 3 of those yrs were medicated. Then I decided to take my life back from pain and a foggy brain! My MVD was June 12th. I had 2 compressions. A “Clear” MRI. As my TN Surgeon said- the compressions are blood vessels, meaning most doctors will say that the MRI is clear, if there are no tumors, etc. I urge you to speak at length with your current Dr. Make sure that he does MVD’s on a weekly basis. There are so many variables, that only a Dr that frequently does this can troubleshoot any surprises. I live in FL, went to MI to see Dr Casey. I am currently in the 75% , medication-free statistic! However long it lasts, I am grateful for!!
Good luck! Keep us posted!
Tiffanie
First of all, you do need to see someone, especially when it comes to a surgeon, that understands and is very versed in TN.
I had the typical lightning strikes, and the boring ear pain and the teeth pain as well, it was not fun. I had an MVD that got rid of 90% of my pain. I have an auto-immune disorder that sets off some of the ear pain and I use Celexia (anti-depressant) and that controls the pain, the tooth pain is easily managed by narcotics or just ibuprophen. There is help and there is hope. I was told that once they get the auto-immune disorder handled , all my pain will be gone.
I went to a surgeon that specialized in TN and the a-typical symptoms like ear pain etc. That made all the difference in the world.
Tegretol didnt do anything for me either, I ended up on Lyrica, and that helped with the lightning strikes, but not the rest, the narcotics and antidepressant became my best friends.
I take real issue that the doctors you are seeing are basically writing you off without trying any other drugs, and if I am reading this right, they never did an MRI????? You need that asap to see if there is a compression.
My advice, keep shopping for a new neurologist, and dont give up!! Even with all my other issues, the TN is almost gone for me, so there are success stories out there!!
Yes I have had several MRI scans done to date. They did find an artery having broad contact with the 5th cranial nerve. The surgeon I met with said that he wanted to a 3D MRI at the hospital because it is a better detailed MRI that is done at his facility that I guess can slice up the images of the brain and they can see better then the 2D images that were taken, I feel like I am being pushed around and being put off all the while in horrible pain. Yes the medication is not working for I think the reason I am resistant to the tegretol as well is because when I was a child I had a seizure disorder and I took Tegretol 3 times a day. at least that is my thinking. I have informed my Neurologist about this and he has seen all my history and records from my past. He is an excellent Doctor. The Surgeon I am just getting to know. He comes very recommended and I have researched him a lot myself too. I am still waiting on the call for them to schedule my 3D MRI I am hoping by Weds if not I am calling them, cuz I am not a patient that waits around for the Drs to get back to her. Especially being in the pain I am. I appreciate your words of encouragement and everyone else on here too. I have some family around me only 3 my cousin and two Aunts. My Parents are back east and do not fully understand what I go through. So it is nice to vent and receive feed back from people who are or were in my shoes. I will make sure to keep in mind yours and everyone that responded to me. It means a lot.
Thank you for your response and information. When I go back in after this next MRI is done I plan on having a very long talk with him and I will ask him how MVD procedures he has performed and how frequently? Your post definately gave me hope and knowledge,
Thank you
Collette
tiffanie said:
Hi Collette-- All of our forum friends are so supportive and insightful. With shared experiences, there is so much help here! I am 40, type 1 TN for 5 yrs, 3 of those yrs were medicated. Then I decided to take my life back from pain and a foggy brain! My MVD was June 12th. I had 2 compressions. A "Clear" MRI. As my TN Surgeon said- the compressions are blood vessels, meaning most doctors will say that the MRI is clear, if there are no tumors, etc. I urge you to speak at length with your current Dr. Make sure that he does MVD's on a weekly basis. There are so many variables, that only a Dr that frequently does this can troubleshoot any surprises. I live in FL, went to MI to see Dr Casey. I am currently in the 75% , medication-free statistic! However long it lasts, I am grateful for!! Good luck! Keep us posted! Tiffanie
Thank you for your response and information. When I go back in after this next MRI is done I plan on having a very long talk with him and I will ask him how MVD procedures he has performed and how frequently? Your post definately gave me hope and knowledge,
Thank you
Collette
tiffanie said:
Hi Collette-- All of our forum friends are so supportive and insightful. With shared experiences, there is so much help here! I am 40, type 1 TN for 5 yrs, 3 of those yrs were medicated. Then I decided to take my life back from pain and a foggy brain! My MVD was June 12th. I had 2 compressions. A "Clear" MRI. As my TN Surgeon said- the compressions are blood vessels, meaning most doctors will say that the MRI is clear, if there are no tumors, etc. I urge you to speak at length with your current Dr. Make sure that he does MVD's on a weekly basis. There are so many variables, that only a Dr that frequently does this can troubleshoot any surprises. I live in FL, went to MI to see Dr Casey. I am currently in the 75% , medication-free statistic! However long it lasts, I am grateful for!! Good luck! Keep us posted! Tiffanie
I have had this for over nine years. Tried all the anti-seizure meds with results varying from ineffective to complete disability. Neurontin is the only one that didn't make me much worse, but it also didn't help. I'm very allergic to Tegretol, and Topamax was a nightmare. I took Topamax for about a year. I don't remember that year. I forgot how to drive a car and many other tasks. I couldn't remember the names of pets and close family. I also had bizarre hallucinations. Finally, 3 years ago, I had MVD surgery. The pain was GONE ... for about 6 months. I wasn't considered to be a good candidate for MVD because they couldn't see an obvious cause for my intense pain. I went for a second opinion, and a third. I found 2 surgeons who have done thousands of brain surgeries and are experts at treating TN. They did my MVD, and found scar tissue along with a loop of artery pounding against the trigeminal nerve. This did NOT show up on xrays or MRI, but once the neurosurgeons got a peek inside, the problems were obvious. Don't assume that your doctor is an expert at treating TN. This is an orphan disease that barely gets a mention in med school. Read all that you can, and stick with your fellow TN'er's. This is where true knowledge resides. Even though my MVD wasn't a complete cure, I do have fewer attacks and they are less painful and tolerable. I have been able to live without prescription meds for 2 years now. I still don't have my old life back, that life without pain, but I can function now without strong drugs. It used to be that my pain was so severe I couldn't keep food down. My doc wouldn't give me anything to relieve pain, but she did give me an RX for anti-nausea. She acknowledged that I must be in some horrific pain if it was causing vomiting and weight loss, but she still has to abide by the rules. My HMO will only approve pain-relieving drugs to the terminally ill. Apparently, if you are otherwise healthy, the horrific, kill-me-NOW pain is only a psychiatric disorder. I am so grateful that we have the ability to share our experiences nowadays on venues such as this. I imagine many people did take their own lives when faced with all the disbelief and lack of care from those closest to them. I think it is the reason why this became known as the "suicide disease". If it weren't for my fellow TN'ers, I would have given up and checked out long ago. Now that I know there are so many living this misunderstood life of hidden pain, I want to stick around and push for a CURE! What will cure us will help everyone who has neurological pain... millions. My advice? Get that MVD by the best surgeon(s) available. Sooner than later. If you wait too long, there is a problem with referred pain. The brain becomes so used to pain that it keeps that pain signature going long after the problem is fixed. I made that mistake, but I am still better for having the surgery that several experts told me was not going to help. You are young and in the early stages. The MVD is invasive but it is also your best hope at being cured. It is the only non-destructive surgery available. It actually fixes the root cause.