Coping with Atypical TN/Questioning Chiropractic Care

1

Hello… I’m very new to this website and would greatly appreciate any kind of feedback on my problem at hand. I’m 24 yrs old and have atypical bilateral TN. I was diagnosed a little more than three years ago by my regular doctor and have had two (unsuccessful) neurologists in the past that have given me MRI’s, and when they showed up clear, simply given me drugs and told me to come back in six months- to see how the drugs are working and thats about it. Currently I’m on Neurontin- 9oomg a day, which works sometimes and doesn’t work other times. Last year, neurologist #2 put me on Tegretol, which made me mostly pain free- though side effects set in and I experienced depression, thoughts of suicide and other horrid things. I flushed the pills down the sink and went back on Neurontin, which has still to this day not given me any problematic side effects of that nature (but I still get the typical side effect stuff on the pill bottle).

This has led me to my current situation - my mother is convinced that the TN all began due to a car accident I and some of my family members were in- she has her chiropractor that she goes to for her aches and pains… not diagnosed back pain or medical issues- instead just when she feels uncomfortable or when she sleeps wrong on the couch. I’ve always told my mother that she needs to take care of her body better, but she’s very stubborn… its been in one ear and out the other for years, just going to the chiro when she feels off. She’s convinced that if I went to her chiropractor, all my pain will magically go away - many years ago, when I was 15, she had me go to another chiropractor (who has since retired) for when I had an overuse injury with my hands from playing musical instruments. He said all kinds of things were wrong with my spine- and from there I saw him twice a week, which led to a year of me being sick and weak all the time (once I stopped going, massage therapy over four long years in my arms/hands gave me results).

I want to try things that will help with my TN … but I am deathly afraid of what might happen if I go to a chiropractor again, considering what it did to my body years ago. The issue of my mother also is largely problematic- since I’m not physically sick (like a cast or visible scars), she has been against me taking pills. Against recognizing that I need any kind of medical attention. And often doesn’t believe me when I say that the loudness of the television and other sounds/actions affect me, or that side effects from Neurontin such as clumsiness, aches, nausea etc etc etc exist.

Am I seeing things wrong in this situation? I care about my body. I don’t want to experience what I did in years past, and I’m in enough pain as it is from TN- and I did a craniosacral/massage therapy combo in the last year that didn’t do much other than basic relaxation (ultimately too costly in both money and time for me to stay with), so I’m very skeptical that the chiropractic route has the potential do anything more than that. I’m still living at home, though I only have to listen to my mom when she feels like voicing her opinion about these matters- she doesn’t control me, though in some ways she does since I’m still under her roof. I dunno. Since everyone drinks the chiropractic kool-aid in my house, and their minor body problems were helped, everyone thinks my pain is in my head and will be fixed with that. Time and time again - no matter what I tell my family about TN, and how my pain feels, I don’ t have much of any support.

Thanks for any comments or advice you all might post… I very much appreciate any outside opinion on this :slight_smile:

2

Dear Mallory,

I totally sympathise with the position you are in. Unfortunately for those ‘normal’ people who do not have TN - it is difficult for them to appreciate just what you are going through! You hit the nail on the head when you say -I’m not physically sick (like a cast or visible scars). If others cannot see it, then it doesn’t exist - and this would no doubt be affecting you stressfully as these opinions are coming from your family!

I personally have not tried the chiropractic route - as I have osteoporosis (weak, brittle bones) and I will not take that risk. However, I do know that some here - who hopefully shall post for you - have seen what is called “UCC” or Upper Cervical Chiropractioners, and the success is different for everyone.

Another issue we face with TN is that no two people seem to have the same treatment modalities. We all react individually to different treatments etc., so more often than not - it’s a case of working with your primary care doctor, your neurologist - and maybe looking into what’s called a pain clinic, or chronic pain clinic. There, you’ll often find a mixture of different medical professions all in one tidy unit, who may be able to advise you better on different treatments you could do to see what will work best for you.

I too, am bilateral with my TN. I suffer both atypical and classic versions plus have Occipital neuralgia as well (cervical neck, a band around the head and also the ears). I say this to let you know, that I know what you’re going through. I also have had 2 MRI’s (both clear) and 1 MRA, also clear … It is frustrating that something you know is there isn’t visible to their machines…

How long have you had your pain? Did it take your doctor long to diagnose you? Have you looked into the Trigeminal Neuralgia Association - they have a listing for physical support groups you may be able to attend near your home! They host these support groups all across the US.

Ironically, when you say your family say your pain is in your head - they are quite literally correct - but not in the way they intended it to mean - it really is in your head - quite physically. Someone here actually had a fantastic graphic drawing they did which I found humurous - I’ll try to find it!

No luck looking for that pic now, but I’ll find it and send you a link to it when I do.

Only you know what is going to be best for you. If you don’t want to see a chiro then don’t - but see what you can do about finding a good neurologist who has specialised in TN. Someone here may know someone they could recomend to you - unfortunately, I’m in another country (Australia) and don’t know your neighbourhood.

I’m sorry - I’m just exhausted. I’ve been in pain for days and it’s almost 4 am. I’ll have to write back again another time. Sorry for the long post and I hope I didn’t ramble on too much!

All the best - stay strong and look after you!

Best wishes for a pain free day!

Kerry xx

3

Hi Mallory,

I have a somewhat similar story to you and have had some chiropractic treatments. Hopefully, my experiences can help you out. As background for you, I was diagnosed with classic TN on the left side of my face, as well as Occipital Neuralgia, at age 24 in 2007. About six months ago, my neurologist diagnosed me as having both typical and atypical TN on the left side. Since my MRIs came up clean, it was determined through my medical history that my TN was mostly likely caused by a car accident I was in.

When I was first treated by my current neurologist, he gave me medication, I had an occipital nerve block to address that pain and a prescription for chiropractic and physical therapy. My treatments were performed by a chiropractor working with a physical therapist in the same location who kept my neurologist updated on my condition regularly (all three are part of a pain management clinic I go to). The chiropractor did some manual manipulation, but also focused on performing complementary treatments like heat therapy to improve my range of motion. Immediately after the chiropractic appointments, I would see the physical therapist to massage tense muscles in my neck and face and gave me exercises to do at home. Combined, all of this was very helpful. It did not completely alleviate the TN pain, but it did help reduce the frequency and severity of the attacks. Through these sessions, I learned that my face responds well to heat therapy as well as cold therapy during attacks to reduce the pain a bit.

When the atypical TN first presented, my neurologist sent me back to these professionals, since I had responded pretty well to the initial round of physical therapy and chiropractic care. Again, the treatments helped, but this time to a lesser degree. Even though the treatments didn’t work as effectively as the last time, they were a big help. My atypical pain went from being a 7-8 on a daily basis to about a 2-3. While it’s not perfect, it’s a huge improvement.

If you were to consider chiropractic care, I would talk to your neurologist about it and see if there’s anyone they can recommend to you that they can work with regularly on your care. I think the success I had with these treatments was primarily because my healthcare providers were working closely with one another to monitor my care and address problems as they arose during treatment.

You mentioned that you are currently on neurologist #2. It took me a few months and about 3 neurologists to find one that was able to effectively treat my TN without making me into a total zombie from medications. I encourage you to talk to your neurologist and if you’re not satisfied with the care you’re getting, look for someone that is going to provide you with the kind of treatment you need. Feel free to message me if you’d like to talk further. I hope that my story can help you a bit. Of course, I’m only one person and what works for me may not work as well for you or anyone else.

Keep me posted on your progress. Best wishes for a pain free day!

Sarah

4

Hi Mallory,

Ha, this sounds oh to similar to me! My Mum has been fighting with me to go and see a Chiro who goes in to her work for my migraine variants. I have been really resistant, although she finally got me there by physically driving me there and paying for it! hahah!

Tell you what, I am glad I went. She isn’t a typical Chiro, she is very gentle and influenced with Eastern practices which is another story in its self. Long story short - she is really quite amazing.

I had had to stop seeing her for a while; as my Neuro wanted me to see a physio for a while … so as the two contradict I had to put my Chiro treatments on hold.

I think you should give it a try. Maybe, if not that exact Chiro your Mum goes to, look for one that specalises in cranial stuff. Its just like every single practitioner in the medical fields, for every 6 bad ones you see, there is 1 good one! haha.

I think it is worth some thought, I am glad I went. Although only due to the fact she actually is good!!

Snuggles and smooches!

5

Thanks for your replies everyone. Unfortunately some soreness I had been having in my neck/shoulder, that I assumed was just from sleeping weird a few nights ago, has suddenly gotten worse. I woke up today and couldn’t move my neck to that side, with lots of bad, bad sharp throbbing pain almost everywhere below my chin and above my chest, creeping down my arm as well. I’m going to a chiropractor tomorrow to check that out, as well as talk about TN care. My mom is happy I’m going, though I told her strictly that I will only go forward with care specifically for TN if I’m able to discuss things with the doc first. Between stress in school and regular everyday TN pain, its just too much pain to go through to not do anything, even with my reservations.

Again, I appreciate all of your replies!

6

Hi!

I have been getting bad neck pain to, although think its just due to tensing up due to the facial pain. My Physio doesn’t think there is much wrong with my neck. Just one muscle and one joint. The physio has helped a little. Although I think I am going to go back to my Chiro as she seems to be able to treat a larger range of my symptoms. Not that she fixes the problem, but what she does makes things just a little bit easier.

Good luck. Let me know how you go.

7

Hi. You are one of the HUGE groups that have “invisible illness”. Any internal illness that others can’t see. I lived in an in-law family just like yours for 20 years and they were so cruel to me about my lupus and TN. I go to the chiropractor too, but it hasn’t helped the TN. I don’t think they can adjust anything near to that nerve. Even my chiropractor gives me herbal medicines that are “pills”, so its odd that your inlaws say “no pills”. We just can’t explain this to anyone. They won’t understand unless they experience it, so we have to do what we think is right because its US who suffers. My first husband left me with 3 hours notice, I didn’t know we had a problem, and now I see it is a blessing, because my health soon got much worse, and they would have killed me with they way they made me work and taunted me about my “faking”. You can’t please them, and shouldn’t have to, so please yourself.
Blessings, Sheila

8

Hi Mallory,
I tried chiro care but it didn’t work. It didn’t hurt me though. I have been in three rear end accidents of which the third really hurt my neck. The pain clinic doctor said it is possible the accident was a factor in my TN. But I also had a severe allergic reaction that caused total numbness on the TN side of my face. It lasted for months. I believe that was a contributing factor. So who really knows why this happens. Fortunately I have had support from my family and friends. The pain center doc also suggested that I might try some nerve blocks in my neck - something about the sympathetic nervous system. So maybe he really believes the neck has something to do with the TN.
I have not tried those. I didn’t have any luck with the ganglion nerve blocks. Right after I tried those, I had MVD and I’m doing a lot better.
Liz K.