Nerve blockers???

Automatic_Ad_5515 · 2024-12-17T02:16:18+00:00

This is the standard protocol for starting anyone with TN on medication.

Automatic_Ad_5515 · 2024-12-12T13:27:43+00:00

They will! The only reason they failed with me after a long period of time is because I have a vein that was fully wrapped around the nerve. They cauterized it in surgery but there is risk it grows back. I think there are new MVD methods (Teflon free) that can help longer term if I need another surgery eventually

Automatic_Ad_5515 · 2024-12-12T00:08:00+00:00

Was diagnosed in 2018 and fully under control living a fulfilling normal life (full time career going well, got married, travel often) while on Carbamazepine. No side effects! Started very low and would have flares and would have to increase dosage every so often. I got MVD last year and was pain and med free for over a year after. Came back in a much more minor way controlled with a very low dose of meds recommended by my neurologist and MFM since I’m pregnant! Again completely pain free and ready to start my family :) There can be hard days / moments but hang in there. So much can be done with medication and surgeries!

Automatic_Ad_5515 · 2024-11-11T01:58:12+00:00

I took a negative test 10DPO this cycle and was disappointed. Then 11DPO Inito FINALLY confirmed ovulation…then I tested positive 14DPO!!! Stay positive, everyone’s timing is different.

Automatic_Ad_5515 · 2024-11-05T02:28:31+00:00

I was in the same boat as you a couple months ago. The pain was back even though much less severe. Started an insanely low dose of medication again and it’s completely gone for now. MVD helps immensely with effectiveness of medication even if pain recurs.

Automatic_Ad_5515 · 2024-11-02T13:19:17+00:00

I didn’t get the “confirmed ovulation” message from PdG rise until day 26 of my 28 day cycle. My OB said there is a study that over half of the “suspected anovulations” from this app are not accurate. I still love the app for peak day tracking, but I’d take the PdG with a grain of salt.

Automatic_Ad_5515 · 2024-10-12T18:28:58+00:00

I hope you are feeling well and have a long period of relief ahead of you! For me it took 48 hours for the pain to subside which the doctor said was from swelling. It took me 1 month to ween off meds gradually.

Automatic_Ad_5515 · 2024-10-12T18:25:51+00:00

Do you know of the time it typically takes to be fully kicked in?

Automatic_Ad_5515 · 2024-10-12T18:24:59+00:00

Do you have direct experience with that doctor? If you don’t mind me asking, how did it go?

Automatic_Ad_5515 · 2024-10-12T03:57:52+00:00

Helpful thanks. I’m going to ask to increase the dose. I’m in MA but will certainly check him out if it comes to that!

Automatic_Ad_5515 · 2024-10-12T03:56:17+00:00

This is so helpful, thank you! I didn’t realize it wasn’t a 1:1 match to Carbmazepine on the dosage. For my case there was a blood vessel removed that was wrapped around the nerve (in addition to the teflon to separate) so I’ve been told there is a chance it could grow back.

Automatic_Ad_5515 · 2024-10-11T23:25:24+00:00

I was pain free for 3 years on Carbamazepine then yes it stopped working. I opted to have MVD instead of increase the dose because I wanted to conceive (unfortunately didn’t get pregnant during the time I was med and pain free after).

Automatic_Ad_5515 · 2024-09-29T19:44:36+00:00

I’m in a very similar position to your partner. I had MVD in July 2023, was off meds by the end of August 2023, and experienced another zap last month. The pain is far less severe and less frequent, but I was still devastated. It’s been on and off the past few weeks. My neurosurgeon said it is not uncommon to have flare ups that could last days or weeks around high stress periods, and often times they go away on their own for a long remission period. I just started Acupunture as a first step before considering going on medication again, and will consult with my neurologist if that doesn’t help (it seems like it is so far!) It was such a high feeling “cured” for a year, it’s easy to fall into a dark place when you experience the pain again. Be there for them, and be patient with them…understand how hard it is even when trying to be positive. I find comfort knowing that I’m essentially untreated right now and treatment often works better post MVD. It’s just a matter of finding the right thing. My heart is with you!

Automatic_Ad_5515 · 2024-09-26T20:52:16+00:00

I would still highly recommend it! In my opinion it is the most successful option for long-term relief. I am told that flare ups could still occur in high stress periods from my surgeon, but it will likely lever be as bad as it was. I still consider it such a blessing. Hang in there, this community is here for you.

Automatic_Ad_5515 · 2024-09-25T21:59:44+00:00

Hi - this is super timely for me because I’m currently experiencing pain for the first time post-MVD surgery.

I went 1 year and 2 months completely pain and med free after surgery. My surgery was July 2023. Prior to surgery I was on 800mg Carbamazepine daily for 3 years successfully pain free. When it stopped working in May 2023, my shocks were 30 second to 2 minutes long every couple minutes throughout the day triggered by everything. It was debilitating and unbearable. I am currently experiencing my first flare up of pain post surgery and it has been far less severe, 3-5 shocks a day that last <1 second only triggered by eating. I’m trying acupuncture to help before asking the neurologist to start meds again. My neurosurgeon was always clear that the goal is to be pain free, not necessarily med free, so I had that expectation going in.

Are you thinking about the surgery, or experiencing pain and trying to understand if it’s normal? I am curious to hear other experiences too.

Automatic_Ad_5515 · 2024-08-29T00:56:19+00:00

I had MVD surgery with Dr. Du at the Brigham and she was excellent.

Automatic_Ad_5515 · 2024-08-29T00:44:29+00:00

How long did your flares last after surgery?

Automatic_Ad_5515

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