Atypical Facial Pain, Possible Trigeminal Neuralgia, MDDS/Dizziness. Could TMS be the cause?

I need some insight on if others have ever experienced these types of symptoms as a manifestation of TMS.

To give some background about me, I am a 23 year old girl, and for the past 10 years have struggled with OCD/health anxiety, and being called a hypochondriac. I have experienced psychosomatic symptoms before in the past. When I had my first panic attack as a teen, for the next week my lips and face would go numb periodically throughout the day. When I had my first OCD episode, when everything started, I was 14 having chest pains and muscle spasms, convinced myself I had cancer, got cleared by a scan/doctor, and my symptoms disappeared the same day. That has been the pattern most of my life; something plagues me for weeks/months, I obsess, google myself into terror, get a bunch of tests and the symptom goes away once I know I'm safe.

As I've gotten older the OCD has gotten so much worse, exasperated by many circumstances. I've grown to distrust doctors and understand that scans can miss things, so seeing the doctor and getting tests doesn't work nearly as well anymore to relieve my symptoms or assure me I'm safe.

Here is where the story I need your help with starts.

February of this year I fell in my bedroom and landed on my hip. This started 4 months of constant Pudendal Neuralgia and PGAD. I was terrified. It is the worst and longest OCD episode I have ever gone through. I was also unemployed at the time. I had nothing to do all day everyday except be in pain and discomfort and research it. I was researching more than 8 hours a day everyday. It was all I thought about, it absorbed me completely. And it was severe pain and discomfort the first few months. I felt like I was doomed since there was no way of knowing if the nerve was entrapped, in a constant state of damage/injury, or if the nerve was being irritated by tight muscles, or just needed time to heal. I didn't know what the future held and it felt like my life was ending or at the very least horribly changed.

I saw a few reddit threads and spoke to one person on Reddit who told me about TMS. I am a very skeptical person and even now I'm not sure I totally buy it. But it was explained to me that my injury had likely already healed 3 months in, and that my mind was perpetuating the pain, tensing up and hyperfocusing on my pelvis making it stick around. I was desperate but not convinced. Around month 4 I finally just decided to live my life. I had been isolating myself and not engaging in life at all. I stayed at home waiting to get better. Month 4 I finally just decided to give the Mind Body approach a go and just live as if it wasn't happening and I wasn't in pain. Within a week I felt basically back to 100%. However, I was doing PT this entire time, and the same time I decided to try the Mind Body strategy, I also added a nerve floss exercise to my regimen. It's unclear which actually resolved the issue.

I was of course overjoyed that I might actually, finally, be getting my life back! I wasn't even sure such a thing was possible for 4 months. I had cried everyday of those 4 months. But my joy was extremely short lived.

I felt like myself again for 2 days. And then I got hurt AGAIN.

I was at a friends birthday party, and I was sitting in a chair with no headrest. I was laughing hard, and stupidly threw my head back while laughing. For some reason, I thought there was a headrest on the chair behind me. I was fully expecting the headrest to catch my head, so NONE of my muscles or reflexes kicked in to protect my neck/head. My head fell straight backwards with a truly sickening hyperextension of my neck backwards. It hurt immediately. I was able to handle the next 8 hours but that night at home the pain roared it's head.

It hurt so bad. I had given myself whiplash. And it was bad. I was set to go to the Ren Faire with my friends the very next morning, and so I went thinking there was just no way throwing my head back laughing could be a severe whiplash, even if it was painful and sucked. So I went to Ren with a ton of ibuprofen. Ren was fun! But as soon as the ibuprofen wore off it was horrible. The next few days was some of the worst pain I've felt. My neck was so stiff and burned, I had the worst migraine. The fatigue was insane. I tried to keep calm and not panic. I know I'm a hypochondriac, I kept telling myself it was fine, this will get better, whiplash is a common injury, no way it's a Grade III or severe when I wasn't even in a car accident... I also researched and catastrophization was noted as a big poor prognostic factor. So I tried extra hard not to catastrophize. I kept trying to determine my Grade of injury because the pain truly was severe. I saw Grade II was pain but Grade III included neurological problems. So I said to myself I'm fine, it's Grade II, and kept checking in with my body to see if neurological symptoms popped up.

And then they did.

3 to 4 days in my tongue started burning. I was so scared. I went to my GP and she had no idea. The burning spread to my face. Then came dizziness. The dizziness was NOT vertigo, it was more like MDDS. Mal De Debarquement Syndrome. It feels like I'm on a 24/7 constant, rocking, swaying boat. The floor feels like I'm walking on clouds or a trampoline. I get dry mouth, and I never did before.

I should also mention the first day of pain, one of the first places I felt it was in my teeth. I felt all this pressure and tightness in my teeth, like I was wearing a retainer. I didn't recognize it as a neurological symptom at the time, though now I do.

After a few weeks the soft tissues healed. I had my PT check my neck and she confirmed it's no longer tight. The worst of the neck pain is gone.

But here we are going on 5 weeks out, and the neurological symptoms are left behind. They are debilitating, distracting and frightening. The dizziness is the most debilitating by far. It's a package deal of brain fog, disequilibrium and fatigue. My brain is having to work twice as hard just to walk to the kitchen because of the dizziness. And I read up on the Trigeminal nerve, which is exactly where I am experiencing all of the facial pain, the burning in my cheeks and the teeth pressure/aching. And I know that Trigeminal Neuralgia/Neuropathy is incurable. That nerve is part of the CNS, so it's incapable of regenerating or healing itself. And since I hyperextended my neck I'm sure I damaged my brain stem, or gave myself a chiari malformation and messed up all sorts of things. I think I damaged my Pituitary gland too, as my period came 10 days early following the injury and my emotions were messed up for like a week!

And the MDDS is something I've always had, just didn't realize it was an issue. Anytime I spend a day on the water, when I come home and go to sleep, I feel like I'm still rocking on the waves. It's always gone by the morning so I've never thought it was abnormal. I asked my mom about it and she has NEVER experienced that. So now I'm aware I already had this weird, rare, incurable syndrome and didn't even know about it!

I just feel so hopeless. The desperate part of me wonders if this could also be TMS. What are the odds I injure myself this badly AGAIN, not even 2 days after finally eliminating 4 months of pelvic pain. I don't know anymore. My pain was definitely too severe not to have sustained a real injury. But 5 weeks in, whatever was going to heal has healed. And the Trigeminal nerve literally can't heal... I'd appreciate insight if anyone else has ever experienced symptoms like this from stress/anxiety/TMS, if it's even possible for them to present this way, especially since they are 24/7... And I'd especially love to know if anyone has ever recovered. Thank you.

 

Dear @SawyerRhiannon .
I see many aspects of you in what I was ( and am) experiencing for years.
I could write many many things, but I don't want you to get confused. You can name it whatever you want, tms or something else, but yes , you seem to be too close to this situation.
You sound healthy and strong, but it sounds that something bothers you. You can begin the structured program or alan Gordon's program, they are here in the site, to become suspicious and aware of what your symptoms try to tell you.
You need to find what feelings you try to avoid or what feelings you are afraid of. You also can read some useful books ( I found useful Gabor mate's and some other, unfortunately I haven't made a list and don't remember them).
As far as the symptoms are concerned: be aware that you can feel any kind of symptoms, any kind of pain, depending on what you have seen, read, listened of others suffering and your predispose ( not sure is the appropriate word, mean the genetics and epigenetics).
Symptoms will never stop and we chase our tails until we stop to seek what lies underneath.
Start with something and gradually you will realise the truth, anyway we are very very negative at the beginning.
Good luck!

 

Thank you for taking the time to respond, I really appreciate it. So you are experiencing similar symptoms to what I described?

 

So yes, I used to experience many of your symptoms ( we are not exactly the same, nor do we have the same perception, experiences,story, feelings, so we can't have exactly the same). I am sure, if you search the forum, you will find it all!
Read, search, take care of yourself and embrace your story

 

If you're comfortable sharing, from the symptoms I described, which did you also experience? Did those symptoms resolve or evolve/change into something else? Or are you still experiencing them, exactly the same?

 

Well, at least the dizziness. ( I have stopped discussing my symptoms , it is harmful and it becomes obsessive). Symptoms change depending on the circumstances of your life. Ten years after, you will have probably forgotten some and experience new. If you begin a program, you will get many many answers.

 

I am trying Alan Gordon's program, hopefully it helps. So the dizziness resolved for you?

 

I was thinking what @JanAtheCPA wrote, but I truly remember me desperate wondering: will this anytime stop? Will this be my entire life? So, even if it is a " trap question" ( you will realise it later, during your struggle), I will answer.
Yes, of course symptoms generally get better. Back to 2020 I was overwhelmed with dizziness and pain 24/30. Nothing lasts for ever. Change is inevitable. When your symptoms subside, you will probably find a mountain of repressed feelings, too difficult to handle and sometimes you will your symptoms to be back. Anyway, they are just feelings, they can't hurt you ( it a phrase that is written in the forum and makes a lot of sense).
Stop and think: what are you afraid of? What to you love most? What feelings are you avoiding? What do you need to control? Be sincere.
Go for a walk with someone ( eg in my case going for a walk looked like a marathon). Have fun. Get rest and healthy food. Sleep adequately. Take care of yourself.
I don't have time at the moment to read about what jan suggested you reading. But I suggest you search all the forum, especially the success stories.