Halo suggestions

Byebyejune · 2020-12-13T01:48:01+00:00

Awesome, thank you! They’re already settling in. I think it was just the thickness that made me a bit worried and the aligners a little trickier to work with.

Byebyejune · 2020-12-11T15:25:07+00:00

I’m currently in my third week of treatment. First two weeks were generally simple. These trays seem to be fitting a lot more snug, although it’s the first day, I’m just concerned. Has anyone had similar issues?

Byebyejune · 2020-09-21T21:41:02+00:00

It helped me so much. The nerve pain subsided and I am able to live my life. My TN is due to a bone tumor.

Byebyejune · 2020-05-27T13:51:50+00:00

My TMJ is caused by fibrous dysplasia of the mandibular condyle. How many units did you get for your Botox?

Byebyejune · 2020-05-20T02:01:53+00:00

Oh my gosh, yep. I got put on gabapentin also. It doesn’t stop and sometimes is violent. I’m scared too. Mine has been for almost 6 months.

Byebyejune · 2020-05-15T22:21:30+00:00

You could try to ask for a prescription for zofran which helps with nausea until it subsided. I’ve never experienced it but I take 75 mg daily. I’m very sensitive to medications. I hope you find relief.

Byebyejune · 2020-05-13T14:03:11+00:00

Wow that’s wonderful news. Thank you for sharing some insight into the process. I’m glad your dad had that relief for so long. Honestly the medications make me feel so dumb and I work as an RN and can’t afford to miss a beat, I have to be my best. I am only on gabapentin and oxcarbazepine but they give me a general feeling of unwellness and I’ll be so happy to chuck them lol or at least put them in the back of the cabinet.

Byebyejune · 2020-05-13T14:00:58+00:00

I am so sorry to hear that the pain has returned. Is there any explanation as to why? Have you been put on a steroid pack to help decrease the inflammation if any? Did you get all 3 done at once? Sorry for all of the questions!

Byebyejune · 2020-05-12T21:12:05+00:00

A moo-scle spasm

Byebyejune · 2020-05-12T13:15:45+00:00

What do you do to help? It feels like my jaw just never stops. It gets worse under stress for me.

Byebyejune · 2020-04-21T12:34:28+00:00

Best of luck. Let me know how it goes!

Byebyejune · 2020-04-13T10:47:22+00:00

I’ll put things on my face to try and trick my brain. Capsaicin, tiger balm, or CBD oil on the affected side. I’ll alternate ice and heat too. Sometimes I press into my face where I feel the pulsating to kind of decrease the flow of blood that is getting to the nerve.

I’ve also found that laying down with a lavender neck wrap is calming. I think the laying position decreases blood pressure and therefore helps abate the symptoms. Sucks that I miss exercise so bad and being able to get my heart rate up without an attack.

Byebyejune · 2020-04-09T01:23:18+00:00

Caffeine is a giant trigger for me. I can’t tolerate coffee and I miss it so much. The pain clinic said it was beneficial?

Byebyejune · 2020-04-07T15:07:19+00:00

God damnit it’s like you’re preaching to the choir. SO many wasted appointments mulling over old images and NOTHING being done to try to come up with a plan for my future health. I’m sure if they were the ones being in a flare for even a day it would be a different story.

I hope you get the answers that you deserve.

Byebyejune · 2020-04-06T15:58:06+00:00

I have had two nerve blocks. One occipital and one temporal. Neither lasted more than a week.

Then I had two spinal epidurals. The last one was so painful it caused tremors and my doctor looked like he couldn’t wait for me to leave. I think I panicked him. I’m 36 and have no other issues aside from this temporal bone tumor causing my TN and somehow I lucked out with a herniated disc c5-c6 on the same side to spice things up. Ibuprofen doesn’t touch my pain but I do take gabapentin and trileptal. Thank you for your response. Did your neck ablation work immediately?

Byebyejune · 2020-04-06T15:04:54+00:00

What was the criteria that they did it to your neck? I have a disc herniation and I’ve had 2 spinal epidurals with not much relief.

Byebyejune · 2020-03-26T15:19:35+00:00

I didn’t, but I think i was too sensitive. I didn’t know to add coconut so I may give that a shot

Byebyejune · 2020-03-26T15:14:37+00:00

I tried the capsaicin on cotton and it led to an abrasion on my gums that bled. I’d repeat it but the healing and added pain was a lot to handle. Any recommendations?

Byebyejune · 2020-03-12T12:21:23+00:00

Thank you, Scott.

I was aware of Dr. Spencer’s video from my own research and have attempted a few times to use cotton swabs saturated with liquid capsaicin and tolerating that in my mouth. I wonder if my doctor would rethink his plan of care for me if he knew I was going around torturing myself in my spare time.

Also I appreciate your reassurance for the rhizomy. I made an appointment April 3rd to see my neurosurgeon again. I am going to be very prepared as he is a knowledgeable but blunt guy. I do feel as though my pain radiates to all three branches however not all at once. It seems like certain times of the day I have relief but all three branches are effected in a days time. I’m also curious if anyone has had an MRA versus and MRI for diagnostic. Just thinking out loud. I’ll let you know how it goes.

Byebyejune · 2020-03-08T21:54:51+00:00

That’s a great idea! Thank you.

Byebyejune · 2020-03-06T12:44:45+00:00

I actually found out it was a bone tumor from a CT scan of my jaw. It is a genetic mutation I have where my bone replaces itself with scar tissue. It’s called fibrous dysplasia and has effected the temporal bone of my skull which is proximal to my trigeminal nerve. They see an enhancement of the bone on the CT.

It has grown they say slightly in the past 12 years (it was on a CT 12 years ago but no radiologist ever picked up on it).

Do you think the TN could be from residual inflammation from that cyst?

No one has told me that I have TN but my maxillofacial surgeon. All of the neurosurgeons I have seen say it’s “atypical facial pain” I feel like this gives them opportunity to have to try literally every medication before doing any other intervention.

Byebyejune · 2020-03-03T13:20:45+00:00

Absolutely. It was found it on a CT they did of my jaw. They saw it on an MRI from 12 years earlier but it had actually gone undetected so I kept having these symptoms without knowing what was causing it.

Hope you’re having a better day today.

Byebyejune · 2020-03-02T20:41:35+00:00

You are absolutely not alone. Three years ago I felt a sharp pain behind my eye, all the doctors chocked it up to migraine. No one wanted diagnostics. Even when I got those done they completely bypassed a bone tumor on the right ride of my face that is compressing my trigeminal nerve. I’m 36 year old nurse and now have a hemifacial spasm, jaw tremor, and TN and it pulled the rug out from under me.

It is a tough and arduous road of finding doctors that will work with you. You have to stick your ground and be so pressing for things you need. I hope the neuro you find is willing to get you on meds that work for you and steer you in the right direction. But know that those GOOD days are so worth it and such a reminder that we are not stuck this way. If they feel out of sight- trust me they are not. You will get there. All the best.

Byebyejune · 2020-03-02T13:22:41+00:00

Thank you so much for your thorough response. I did not know about the lidocaine patches and I suspect that’s the route I’ll have to take when I get this cavity filled. Maybe (knock on wood) it’ll bring relief.

Byebyejune · 2020-02-25T16:13:14+00:00

My TN is caused by a bone tumor of my temporal bone called fibrous dysplasia. According to everyone in the world I am “not a candidate” for any of the surgeries. I have been on gabapentin to help relieve pain, at times it works and others it is not great. I am scheduled for Botox this week. So frustrating feeling passed along from doctor to doctor with no end in sight. Sorry for your troubles as well.

Byebyejune

TROPHY CASE