Hi Tracy,

So glad you are doing well, although Paresthesia sucks. I have it with Neuropathic Facial Pain and TN, so I know what you are going through.

I was going to have a mesh sheath put between my Trigeminal Nerve and the Arterial Knot causing all the problems, but I had a heart attack in '08 which made me unsuitable for anaesthetics. The Topiramate I take for Cluster Headaches, Lidocaine Infusions and Ketamine are the meds I rely on.

I do hope your improvement continues.

Dave.

Tracy your game plan sounds good. I would not all at once stop all meds either. a little bit at a time . and try to eat easy chew food when your jaw is sore. Agree that yes somethings you just have no control over so its in the Universes / God hands . pstt your not complaining when your have t.n. you live on the edge on the ready for the next pain flare up/attack . I am not so sure that really ever goes away even if one becomes pain free. sending many blessings and like English Dave I too wish for your improvement to keep a smooth and steady pace to pain free and med free happy ending.
PEACE
BMW

Hi Tracy, I hope things are continuing to go well for you. I'm so glad that you're feeling better in time for your daughter's shower. Have you been able to go back to work yet? Is your jaw starting to feel better?

I went to a headache specialist last week to talk about the new headache type I developed after my surgery. He spent an hour and a half talking to me and was very interested in my TN. His theory is that I never really had TN. He thinks I have occipital neuralgia that was triggered by a fall I took a few weeks before the pain started. He used the word inflammation a lot. He put me on boswellia serrata (natural anti-inflammatory) and asked me to try a gluten-free diet because I've been having mysterious stomach issues.

My son has terrible teeth and has had a lot of dental work lately. Since learning about TN and hearing so many people say that theirs started with dental work, I worry every time he goes to the dentist.

I have another question for you. Did your vascular loops show up on an MRI before you had surgery?

I hope your days age getting better and better. Take care, Cheryl

Hi Cheryl, I'm feeling somewhat better. Still having the same old numbness and paresthesia. I've been wondering if this is from decreasing my medications. It seems every time my meds go down the numbness moves on my face. Almost like withdrawal symptoms.

I'm wondering if anybody else found this to be true as well.

My veins did not show up on my MRI before my surgery, but because of my symptoms my neurosurgeon said I had typical TN.

I had to go in for a teeth cleaning and I was petrified. I understand your fear as well for your son. Make sure you see a reputable dentist. If work is needed that a specialist should do, go to a specialist not a general dentist!!

Believe it or not I'm a stay at home Mom. I currently don't work out of the house. I have a 24 year old daughter and a 5 year old daughter, but I am a registered nurse. Hopefully some day I'll get back to it!!

My jaw is still sore but I'm doing massage and exercises that seem to help. Plus I've been taking 15 minute "me" breaks to sit out in the sun. Relaxing really does help.

I hope your headaches resolve soon with the new medication. Keep me posted!!

English Dave, I'm so sorry you couldn't have the surgery. To date I'm doing somewhat better.

I'm hoping the paresthesia is transient and will go away once my nerve is completely weaned off my medication.

My daughter is in the medical field, just like her Mom, and continues to harp on me that nerves can take up to 1 year to completely heal.

I hope your meds are helping with you pain

Tracy

I'm sorry to hear that you had to go through all this while caring for your little one. I'm extremely grateful that my health problems started after my kids were grown and out of the house.
I hope your nerve is continuing to heal. I hadn't heard that it can take a whole year. That's good to know.

Tracy I hope you are having good days. That your nerve is calming down and healing as the pain lessens.we have something in common besides the t.n. my oldest is in the medical field too . she has a college degree in bio med and just finished her first year at med school in UNC . a first generation college for us tho. lol funny how things turn out she was in grade 3 when I had my accident and got this t.n. monster. She vividly recalls watching the helicopter land at the accident a block away from her school she was waiting for me to pick her up ... enough flash back for me on that ugly time back there. But sometimes the bad hard things do leave a positive impact and inspire in a good way. Sending you all the best and praying you continue to heal and become pain free.PEACE
BMW

My pain seems to be gone. I do get occasional twinges in my lower teeth. It doesn't hurt. It just seems to surprise me.

The numbness seems to be kind of traveling around my face now, so I'm trying to take that as a sign that it will eventually be somewhat better. It does this every time my meds are decreased. I'm still wondering if this is just because my nerve it having "withdrawal" symptoms and is just learning how to adjust without medications. I truly how that is the case.

I'm doing cheek and jaw exercises several times a day with massage without fail and I think it helps. I also do not have to wear the lower retainer anymore. I have gotten a permanent retainer instead. That also seems to have helped a little bit. Maybe it was putting pressure on my nerves?

So many questions and not enough answers!! It's been just over 2 months since my surgery and I'm sure I still have much healing left. Maybe because I had so much manipulation of my nerve, due to multiple veins being wrapped around, my recovery will take longer than most people?

Either way I'm definitely having more good days than bad and I am forever grateful to my neurosurgeon.

Praying for all my fellow TN sufferers to have pain free days

Almost 3 months post op MVD. Has anyone out there had withdrawal symptoms from Bacolfen? Currently experiencing depression fatigue and sleeping issues.

I have a hard time just getting out of bed in the morning. I find it strange that I had no problems stopping Norco, but this one is getting to me.

Not to mention the left side of my face and head is still numb. The past week has been extremely hard on me. Any advice??

I can help with that. I have had plenty of meds to try before anything else was even looked at.Each Med or combo of meds affect each of us different . I would definitely bring this up with your doctor so that you can safely and slowly reduces your med and also so the Dr. knows every things in your healing and recovery is progressing as they expect. I would guess that perhaps the Dr might switch medication to help with some of the issues . I found i was allergic to anit seizure meds by going to the er with totally body tremors.and other meds I have looked like i was detoxing from some bad street drug or something. It is a slow process it dose not matter the treatment I know it is so hard waiting for everything to just calm down and be off some of those meds. and that in turn can get the stress up and that wakes up the pain monster but just keep holding in there. I would call Dr before end of week it wont hurt to check in and get input. thats what he is there for . so do not feel like you are bothering the Dr. they are getting paid to be your doctor they serve you not the other way around.also dont forget you can contact Ella since she has had one . do cold or warm compression help ? sending low pain and healing thoughts to you. also if you need anything to I will try and help or just listen . Baby steps one day at a time . PEACE
BMW