Chronic facial pain and left sided headaches

Hello @olivia52,

Although they have talked about Botox for different conditions, I'd like you to meet @tntredhead, @leigho55, @fleure, @noreenf, @ajgray, @fifi, @medic7054, @diamond22, @bobsconnect, @rickw52.
I also wonder if @bigred80 may have some insight for you?

And, I would encourage you to visit this Mayo Clinic page about Botox: http://mayocl.in/2iTxY8x

@olivia52, how have you managed your symptoms since you first joined us in November 2016?

I have actually been battling left sided scalp and temple pain since fall of 2012. Tried lots of different antidepressants as I have anxiety issues too. Even tried Lyrica. Everything makes the pain worse or starts even more pain that makes my eye and eye socket and the rest of left side hurt worse. Nortriptiline was helping somewhat then went off of it after 6 months as it was causing eye pain and vision changes. Pain flares now I sparingly use iboprofen to settle it down to dull ache. Indomethicin 75mg for bad flare. Neurologist recommended I try to tolerate taking that every day but the PPI bothers my BP and I have concerns about long term use of the Indicin. I am trying out compound now on the facial and temple areas that helps somewhat....just trying to manage best I can.....

Hello Olivia52,

While we wait for other members to chime in, I thought you may be interested in taking a look at the following conversations:

- Migraines, http://mayocl.in/2iUuVwY
- Trigeminal Neuralgia, http://mayocl.in/2jkNUzt

Each conversation addresses various medications, symptoms, and how to deal with pain resulting from a few illnesses that cause severe head pain. These illnesses may not be the cause of your head pain and I recognize that you mentioned finding other members who have used botox not for migraines, but both conversations may offer some similar advice and discussions relevant to what you are experiencing.

Olivia52, have you been diagnosed with a specific cause of your head pain?

They have informed me they are not migraines or trigeminal neuralgia. Best guess... atypical facial pain that is on the left side and runs up by temple and scalp. All dental and endodontic stuff looked into as well. Root canal only took away tooth sensitivity. Indocin at 75mg helps on the bad days, but i would rather not take it every 8hrs every day. Lots of risks using that over a long period of time.

I had the neurologist at Stanford movement clinic give me Botox for corticobasal syndrome no help and no side affects.

Has anyone had chronic visual snow (constant visual aura) -It does calme down after my cortisone injections and botox. I also have tinnitus all the time plus chronic pain.

Hello @arabella and welcome to Mayo Clinic Connect. Thank you for posting your comment about visual aura. I'm sorry to hear you are suffering with such symptoms. That must be tough to deal with. I'm glad to hear you get some relief from your injections.

I would like to introduce you to other members @bostonsanfran, @shellyg, @emiliaolga and @dongee; all here discussing visual aura, tinnitus, acupuncture and chanting sound waves.
Our goal is to connect you with someone that you can relate to and share thoughts and ideas with. We have had great success connecting members who have been able to support each other and/or even propose something that has worked to alleviate symptoms that another member may benefit from.

While we wait for others to join discussion, here is a short video on visual aura http://bit.ly/2l9asVT and this discussion taking place on buzzing in the ears was also interesting to read. https://connect.mayoclinic.org/discussion/buzzing-in-ears/

Can you tell the community how long you have been suffering with such symptoms? Are your symptoms caused from migraines?

My mom has this and we are currently seeking another pain clinic as there are not many who understand and even fewer medications that help. I just read a medical journal where 79 people were tested with botox and placebo and there was no difference. We explored that option too.

@olivia52 hi I am currently looking for others with same medical issues my mom has Atypical facial pain same symptoms you have. She has tried most medications and currently her pain clinic which jas done a terrible job with her care jas reduced her medications. I am curious she has eye pain and vision changes but she is not on the same meds. She is on xanax, Percocet, and Tylenol. She has been on lyrics, gabapentin, tramadol, trazodone fluvoxolen etc. Have you been on anything other than current meds? What is the name of the compound? She says she was able to tolerate pain better when she had lortab and had fewer side effects but no one will listen. Do you feel that way like no one listening?

Hi!
Sorry for jumping in so late.

I had very similar issues like your mom's. One day, a new one popped up; my ears were hurting and I was getting dizzy. I ran to my doctor because it was a Friday and I didn't want to live with an ear 'infection.' My ears were clear. He asked me several strange questions and came up with a diagnosis, TMJ. He sent me to a dentist that specialized in TMJ. My doctor explained that it was a medical problem that is dealt with by a dentist.

It was difficult, but he found me a dentist that specialized in the treatment of TMJ. He explained that the issue probably occurred because of improper alignment from the braces I wore years earlier. My teeth looked good, but the physiology of my mouth was not considered and my jaw was misaligned. He made me a special bite plate that I had to wear 24/7. Without the plate, I could not clench my teeth. Every couple of months he would shave the plate down until my teeth met.

My jaw was realigned and I no longer needed meds or a plate (except at night). All my symptoms were gone.

I don't know if anyone suggested that this might be the problem, but I think if your mom is still suffering, it would be worth a trip to a dentist.

Good luck
Ronnie (GRANDMAr)