TN and MS Symptoms

If you have TN and MS, can you please help me out? I’ve been on my TN journey for 5+ years now. Lost most of 2012 with “left side” V1 excruciating attacks and lots of gabapentin and trileptal. Went into “99% remission” in 2013 for 4+ years. I’ve been drug free since then and managing the occasional attacks which I can live with. December 2017 brought 30 episodes of 5-60 minutes of non-stop, screaming pain on the “right-side” V3. None of my brain scans over the past 5 years, including at Mayo, have shown any trigeminal nerve compression issues (superior cerebellar artery or brain tumor). In the past 7 months I have had nerve issues with my head, eyes, hands, feet and back. This includes the horrible TN flair-up (now in remission), a Glaucoma diagnosis (some loss of peripheral vision loss, then mysterious minor improvements), spontaneous peripheral neuropathy in my hands and feet, unexplainable and serious pain in my lumbar spine area (now completely gone) that caused me to use a walker for 2 weeks. My body is now pain-free and only the left-side leg and arm numbness and weakness remain. I kind of drag my left leg and don’t bend my ankle when I walk. One neurologist, one neuromuscular doctor and one orthopedic surgeon are basically stumped. As I dig and dig through medical information, and having my wife help me to be honest about my symptoms over the past 5-10 years, I realize that I have experienced a lot of on-and-off MS-type symptoms such as fatigue, dizziness, numbness and weakness in my extremities, frequent urination, vision issues, balance issues, etc. My 2 friends with MS say that I should pursue this path with a neurologist whose focuses on MS. So far I can’t get any doctor to read my extensive file or listen long enough to look at it more holistically. My wife is tired of hearing me scream due to outbreaks of TN pain, left-leg pain and back pain (all 3 in remission during the past 2 weeks). I read that MS symptoms often present themselves years in advance of a TN diagnosis, both being demyelination issues. I’ve read that having TN on both sides, which I now do, is consistent with larger demyelination issues common to MS and which explains no compression issues found with my trigeminal nerves in MRI’s. I’m wondering if anyone has had a similar TN journey that eventually turned into a diagnosis of MS and how you’ve been treated. Does it even sound like MS or similar central nervous system issue to those of you who are more knowledgable than me?

Here’s my take on MS and TN and the whole nerve damage issue–we here are all suffering nerve damage, it is a continuum, with very obvious MS being at the end of that road. As you have seen, nerve damage can manifest in very many ways, and be quite unpredictable in behavior.

Sure, many have had great results (at least temporarily) from MVD surgery. But it has been found that lots of people have nerve compressions from arteries, and only a small number suffer from TN as a result of that. The nerve damage (demyelination) happened first, compromised the nerve, and unfortunately continues to happen for most.

If I look at my situation, I also have symptoms that could possibly indicate future MS, such as severe incontinence issues, waking up with numb hands, odd cramps, etc…even though otherwise I really am quite healthy and active. My MRIs appear completely normal, any nerve damage is not visible. In my case I believe my nerve damage was precipitated by 35 years of psych drugs.

Unfortunately, there is no “magic pill”. If you were diagnosed with MS, you would be given strong drugs to treat the symptoms, but nothing that could even remotely be called a “cure”. So you might investigate possible MS treatment options to understand what is involved with treatment, and see if that is even a path that you want to go down at this time.

I’ve been investigating possible lifestyle changes to treat nerve damage (the Wahl’s protocol in particular) and have made many changes to date. It is hard to do, but if it even has the chance of helping me heal, it is very worth it for me. I’m not willing to take harsh systemic drugs yet, if things get worse, I may have to go that way.

So I would encourage you to do as much research as you can on nerve damage, MS, possible treatments and methods of healing. Doctors don’t always have all the answers, and are not always highly motivated like we are to find them.

Thanks for the reply Ziggy. Believe me, I certainly don’t want an MS diagnosis since I’ve seen how that disease can progress in terrible ways. I’m just looking for better answers, which I guess we all are at times. This old biology teacher likes to be able to point at something and say “there’s the problem”. When not actively suffering from some nerve-related issue and the horrible pain that I’ve experienced on and off, I’m a very lucky guy. I ride my bike 26-miles per day, even with the current numbness and weakness in my left leg and arm, and am in the best shape of my life (in my 60’s). But when one of these issues arise and my wife finds me lying on the floor screaming in pain, I wish I could somehow fix it. The last few months of occasional agony has unfortunately aligned with her retirement. What’s that old saying? A happy wife is a happy life. I don’t want her to be my nurse. Good luck to you and anyone else who may be reading this. We are all on a curious journey. I’m so thankful for the support offered through this website.

Hi Brad : I started with TN in 1989. I lived with it. It came and went . Til it increase on the rt. SIde of my face. I was working in the heat and I started having a pain . Well if you know the painting The Scream . It finally subsided. And I made a appointment with my dentist. Because the pain was in my mouth rt. Side. He said to see a neuro . The Neuro told me I had a 50/50 chance I had Ms or TN. I had a Mir and they did my brain twice. The second time I could feel the tech watching me walk. My left leg kind of dragged at the time. Anyway I went to see the Neuro and he said I had me and tn. He told me I should start medication and I should start Tegretol . Because if I have TN and Tegretol and it works than I have ms. My Mir showed a very small lesion in my cerebellum. He said it was hard to see. Couple years later I hurt my neck and had ct scan and they found a large lesion on my c3 . At this point of my life I have TN on both sides of my face. I use right now 1100mg of tegretol and 900mg of gabapenti. My neuro said if I have surgery it will come back. She said you can’t remove your leisions. So at times I live with terror. Because even though I take medication it comes thru. Anxiety BIG TIME. I hope you figure out what is happening to you soon. I wish you well . Jess

Hi Jess. Thanks for the reply. First of all, I wish you the best with your journey, a journey that I know you wish you were not on. I know the painting The Scream very well. First time that I saw that painting I thought that was such a good way of showing what it feels like to suffer from TN. Brutal pain that I could have never imagined. When people says things like “I can imagine what the pain feels like.”, I say “No, no you actually can’t.” I guess my spreading nerve pain, numbness and weakness may be just more on a continuum. I am such a fighter that I will do everything that I can to lead a normal life and have fun every day of my retirement. When I hit a TN pain-remission period, I wean myself off of the meds as fast as I can, per my Mayo neurologist’s instructions, so that I can get rid of the dozen or so side effects that I typically get from the anti-seizure meds. They really mess me up. Hang in there my friend. Enjoy every pain-free day that you have and look forward to the next pain-free day, week or whatever it is. That’s what I try to do. I’ve learned so much over the past 5 years about TN, nerve pain, meds and exercise that sometimes I actually feel like I can gain a little control over it instead of it controlling me. Fight on! Good luck.

Hi Brad,
I’m a newbie here. Not at all a doctor. However, I do have both MS and TN. The MS was diagnosed first almost 7 years ago, but from my medical history, I have had it several years longer than the diagnosis date. Your extremities weakness, lack of balance, and dragging left foot (dropped foot) and other non-TN symptoms sound very much like MS. An MRI should show confirming lesions. Your neuro would also need to track and identify which type of MS (i.e., relapsing remitting, etc). As of yet, I haven’t chosen to start any drug protocols. For me, at this time, I think less–as in no drugs–is better. I did the online drug research, and encountered and picked the brains of various persons who have it–some choosing drugs, others, not. I will reconsider the drug pathway based on progression of my condition.

The TN started last year, but I didn’t have a new neuro yet. So it’s been confirmed as of approximately this past May. For me, my 2nd biggest TN issue, is that I am an insulin injection diabetic. When TN doesn’t let me eat/drink, like today, that is not s not good. Hoping to gain some Capsicum TN solutions/other ways to help my desperation.

So all thoughts are welcome. Got to sleep now. Only 3 hours sleep last night, and I think it’s why my TNs firing off increasingly. Can’t take meds on empty stomach… So hoping sleep helps. I’ll be back tomorrow. Night all, and hope your night is able to be restful, as much as possible.

Hi Brad,

I’m a newbie, but my situation is a bit like yours. My primary diagnosis is glossopharyngeal neuralgia, but I have neuralgia symptoms in my scalp on both sides, my ears, and other parts of my body. I’ve been somewhat concerned about the possibility of an MS diagnosis. I have a partner who works in long-term care, and she recently had a patient who had MS which first presented as TN years before the MS diagnosis (that’s all I know). I’ve recently developed an annoying muscle twitch in my left arm. It may be a medication side effect, or it could be something else. My MRIs haven’s shown any signs of demyelination or lesions, so far, but it could be early days for me.

Hello. Thanks for the reply. I can tell by your name of PainFilled that these terrible conditions cause pain that overwhelms you at times. I guess we all know that feeling all too well and the roller coaster of pain relapses and remissions that go with it. I wish you the best as you go forward.

Now that we have brainstormed and documented all of my various symptoms over the past 10 years, my wife and I have concluded that it must be more than just being an aging jock who continues to abuse my body…and the fact that I am getting older. I am good at rationalizing things. As a guy who plays over 200 Senior Softball games per year, when I mysteriously fell 5 different times over a past year while running the bases, I figured my cleats were just wearing out. Now I can’t run because I’d fall over to the left. Too numb and weak on the left side. When something else would happen, which I now understand to be MS-type symptoms, I would just say that I am getting older (which is true). But when we put the list together and I then compared it to various MS-symptom lists, I could see that I have almost all of them on and off. Believe it or not, I have actually had 9 brain scans (7 MRI’s) over the past 5 years, one showing some gliosis, but no brain MRI’s in the past year. Never any signs of compression related to my TN issues, perhaps another sign of demyelination without obvious compression. The past 7 months has been when more of the MS-type symptoms have really been showing themselves. I’ll probably head back to Mayo Rochester since I am only 2 hours away. My goal of course is to do everything that I can to minimize symptoms and don’t really care what it is called. It did read about Wahl’s Protocol and found that interesting. I have already shared that with a close friend who has been successfully fighting MS and has improved some recently when switching from Copaxone to Techfidera and increasing exercise.

Hello. I assume MarkinKS means that you live in Kansas. I usually play Senior Softball tournaments in April, sometimes July (like playing in a humid hell) and sometimes September. I play for a team called the MN Blizzard and at the Shawnee Mission softball complex. Really nice facility. I like it so much that I have hit the 4 longest homeruns of my career, at any age, in the past 2 years there. Great restaurants there too. Unfortunately my recent issues have me on the disabled list since April. Ugh.

Anyway, I hope you find the answers going forward that help you with your journey. I forget to mention in previous posts that I truly think that two things have figuratively saved my life during my journey. One, this website and all the caring people who provide support and great information that sometimes is very helpful to the neurologists treating us. Secondly, and most importantly, has been my reading 4 years ago the book Striking Back by Dr. Ben Casey, with a forward from Dr. Peter Janetta, a pioneer of sorts regarding TN treatment. I learned so much in that book, which allowed for a better diagnosis and a recommendation from me to my neurologist as to what drugs I wanted to be on and what doses. We are all different, but they started me on 2700mg of Gabapentin, then experimented with 600-900 mg of Trileptal only. I was a drooling, side-effects zombie who was still experiencing a lot of type-1 excruciating stabs, along with some burning type-2 episodes. After reading that Gabapentin frequently helps with type-2 and Trileptal helps with type-1, I recommended to be put on 600 mg of each at the same time. They agreed to try it. (PSA: Don’t change meds without consulting your doctor.) It worked quite well. I got pretty good relief, and although I still had numerous side effects, most days I felt human and could function reasonable well. After 8 months of on-and-off misery, I mysteriously went into 99%-remission, slowly weaned off the meds and went drug-free for 4 years. Without that, and many other things I learned from Striking Back, I possibly could still be a medicated zombie. Hard to say. When I suffered the horrible TN V3 episodes on my “other side” in December, I went right to the 600mg of each med since I had that previous experience with that combo. Fortunately, back in remission…as we speak. By the way, I am writing a short story about my continuing journey, with a working title of “When Life Stabs You In The Head”. Part inspirational, part as something to leave my kids, who someday might find it interesting to know what it was really like from the inside.

In closing, educate, educate, educate yourself on TN and nerve pain. You will find out how quickly you catch up and exceed some neurologists. My Mayo neurologist said that I was like talking to another neurologist, at least when it came to TN.

Good luck. Message me anytime you need support from an old veteran of TN.

Hi Brad,

Not too much time to respond today ~ TN is the worst pain I have ever experienced so I sympatize with you completely. I don’t think anyone can understand this type of pain. The root cause of my TN was pesticides and heavy metals ~ See if there is a functional medicine doctor close to you or a doctor that does nutritional response testing. I have read that MS might be caused by a body toxicity as well so if you have those symptoms ~ all of these metals cause major disruption of our nervous systems. . Sending many blessings your way!!!
ps ~ I went to numerous MDs and dentists (MD’s wanted to do surgery to cut the the nerves in my face ~ I have read people do have this procdure, but the pain returns since that is not getting to the root cause.

Hi Brad, Im a nurse but retired now, as Im caring for my Mum who has been through horrific pain with TN. Im also into alternate meds and I think Ive found the cure. Try and find a liquid formulation called HiVita, Im from Australia so you might have to get a box of it shipped, its been formulated by a chiropractor who found most pain is due to lack on proper nutrients and it consists of tons of vitamins, minerals, amino acids and herbs. I give mum 10mls three times a day. Plus I sourced a product from iherb called GABA, this is NOT gabapentin or anything like it, so dont confuse the two. I bought the 750mg capsules and I give mum 1 xx three times a day. Mum is on epilim for TN and this GABA enhanced the production of natural GABA in the brain and VOILLA her pain ceases to be. Plus a biggie that most people do not realise. INCREASE YOUR FLUID INTAKE it help the myelin sheath somehow by preventing friction on the nerve. This is my magic formula, please get back and let me know if its working. The good thing with my treatment is… you wont be sleepy or out of your tree, you wont get addicted, there are NO side effects and its mostly natural. good luck Brad.
xxxx Judy

You’ve got my attention. :hushed:

How long has your mum been on the HiVita and GABA? Do you have the name/website of the makers of these items? What is epilim, and what role has it played? Did it work well alone, or best after the HiVita and GABBA?

Clearly, I’m eagerly seeking alternatives of every type. So, please pardon the many questions.

I’m reading “Wahl’s Protocol” at the advice of someone on this sight. Dr. Wahl’s approach (she has MS) is to attack auto-immune and various nerve conditions through nutrition and properly fueling the cells to fight off or reduce symptoms. I have a long way to read yet, but will be changing my diet more. I have been taking Super B Complex and Magnesium daily for almost 5 years. I believe it has helped. Dr. Wahl addresses vitamins, minerals, etc. In her book. I’m remaining hopeful since my various doctors are getting nowhere on why I’m having all the nerve issues and pain beyond my TN.

Hi Brad, Mum has been on hiVita since three weeks into her knock on deaths door moment, with 3 weeks of inability to eat or drink anything she nearly starved to death, so I went looking and found HiVita, there is nothing on the market with this much goodness in it. Floridix has some, but not everything HiVita has in it, like amino acids, wow. i would highly recommend it to everyone over 50yrs old, but with an inability to eat and drink, its a must. I dont have a website, but just google HiVita and its bound to be there. I put her on GABA round the same time. The GABA can be bought off the iHerb website, and within 24hours her pain began to subside and within a week, she hasnt looked back and I have not stopped giving it to her, nor will I ever stop. Her finger nails have lost the ridges, which means its helping her bones as well. Epilim is used for abnormal firing off of brain cells as in epilepsy, bipolar, nerve damage and this seems to work for Mum and I deliberately kept her on a minimal dose as the side effects are horrific. Its been nearly 4 months of pain free. I must add - a little prayer helps too, I cried while praying for pain relief for her and with the addition of more fluids during the day, she is great. She will be 94 in November. Good luck Brad, I hope this helps you, and others.

I have been diagnosed with MS for 33 years and have had TN for at least 13 of them. I have now found a Pain Management Specialist who has successfully treated my excruciating jaw and mouth pain by using a minimally invasive procedure called “sphenopalatine gangion block” . Instead of using the nose as a route to the trigeminal nerve, he uses a small needle and through an extremely tiny tube, administers an anesthetic to the trigeminal nerve. I had the first procedure in which he put a small dose of anesthetic to see if it would work. I was “under” for about a 1/2 hour and then in recovery only 20 mins. Then home. The procedure worked beautifully. From a pain level of 10, to 0. I can chew, eat, brush my teeth again. No more liquid meals. Next week is the real thing with higher amount of anesthetic which he says will last months if not years. Wahoo. Please spread the word that about this procedure. Neurologists aren’t always the best docs to have treating chronic pain . That is why there are Chronic pain specialists. I hope that everyone can avail themselves of a pain specialist who can help them without drugs. Again, please spread the word. Not everyone knows about this…it works well for people with MS.

I see another neuro-muscular physician tomorrow who will probably direct me to someone else. I keep having more MS-like symptoms (most all of them) but there are no central nervous system lesions showing on any of my MRI’s over the past 7 months. I have researched most every auto-immune disease and can’t find any that describe what I am experiencing…except MS. Round and round I go. Since this must have an inflammation component to it, I am going to suggest a course of prednisone tomorrow and see if my neuropathy and pain symptoms lessen. Seems like I am being leading the way as the various physicians keep saying essentially “I don’t know what this is.” If anyone else can talk about their treatment for diagnosed TN and in-diagnosed MS-like symptoms, I would appreciate it very much.

What I can chime in,even though I am sort of in the same boat as Ziggy,is that when I did a flow chart for the doctors they really liked that.Showed up all the major situations,drugs and doctors-the time line ,and took up one page.
You might want to think about doing that for your next visit.If they get curious about one square-you would have further notes on that.
Doctors do not want the big package of info.Maybe if you could go to a naturopathic clinic they might have time to review everything and make suggestions.
Have you had lyme disease test?
Usually,from what my hospital says,the MRI is used to look for tumor and lesions consistent with MS.I do not have those.
Another thing would be for you to get a copy of all your tests(the actual imaging and not the report) and find someone who can review them all.Not sure who that someone would be-but it is a fantasy of mine.
Wishing you a full remission and give your wife a big hug from me.

Well, I finally got my doctors caught up to my suspected diagnosis. Since my last post, my MS-like symptoms were added to with Parkinson’s-like symptoms. After 4-months of various doctors, including 3 appointments with a neuromuscular specialist, his lightbulb suddenly came on, he looked at me and my wife and said, “I don’t want to scare you, and this is preliminary, but I think you probably have Parkinson’s.” I looked at my wife, then the physician and said, “That is what I suggested to you last time based on my symptoms and you said ‘no’.” The good news is that my TN remains in remission this time for 8-months and counting, the bad news is that I now apparently head done another scary path. I will fight it as hard and positively as I have my TN. My biology background is helping me to digest ‘The Wahl’s Protocol’ and attack this from a cell nutrition standpoint. If it progresses, as progressive diseases do, they will want to throw Levadopa/Synemet at me. Any and all feedback is welcome. Thanks in advance.

I have to state that what I call “10-minute” medicine is so problematic with the current state of medical practice. I may have a 30-minute appointment, which might actually lead to 10-minutes of quality time with the physician, but it’s not enough to have a thorough discussion of complex symptoms. So for months I have spoon-fed symptoms as they basically look at their watch. Frustrating. I even spent 2-hours, at their request, detailing my symptoms in their online MyChart system. When I asked my neuromuscular physician, who was recommended by a trusted neurologist, what he thought, he said, “I’m sorry, I didn’t get a chance to read it.” As mentioned previously, I think we’ve finally had a meeting of the minds, but what a broken medical system, in my humble opinion. My daughter has a friend who has started her medical practice and told me that she is already dissolutioned with the medical system due to the relentless push for profits and her lack of time to analyze complex symptoms before prescribing treatment (I.e. drugs) and telling the patient to come back in 3 months. Ugh.

Hi Brad
We are so screwed.I am glad that you have the background to try and figure out how to battle these diseases and doctors.
Someday I do not know which is worse.
Wishing you health