Petrous Apex Cephaloceles and TN

General
21

Momo -

Ha! With the pudendal neuralgia my doctor turned 3 shades of red, but I always worry that weird nerve things are connected – why else would all these nerves “come alive” in the same year?

I am actually going to a physical therapist for pelvic floor therapy and really nervous about it – it’s so embarrassing, lol. And although it’s startling, some of the pudendal stuff has seemed to fade with the higher dose of oxcarbazapine. But my neuro doesn’t know why lol. So maybe we should be the doctors for a while.

We talked about gabapentin and he doesn’t want to put me on it until I max out the oxcarbazapine dosage. (Scary, that’s soon, tho!) But somebody in this forum said it was better as a “take as needed” medicine. Not familiar with baclofen but I am going to start writing these things down. For my other-body pain, I can’t take NSAIDs anymore, so I am trying to learn about nerve meds and other pain meds as much as possible. I swear the doctors just google like we do. :slight_smile: but bless their hearts.

thanks every one here for all the replies :blush:

22

I have a legal prescription for marijuana.I found the CBD oil did nothing for my mouth pain.I take a high THC oil at night to sleep.
I have been taking B12 sublingual -but I might go for some shots-if I can get them in Canada without a doctor prescription.Good luck and hugs

23

Interested in that pelvic floor therapy.That may be me soon.My right sided back pain has not responded to anything and the neurologist suggested it-but he wants to do an internal first.The whole yuck factor.But if it helps…

24

I take Superior Source B-12 5,000 mcg under the tongue.
I order it on line from Vitaminsource.com or Vitaminshoppe.com. I get 60 tablets for around $28 which will last. 2 months.
My doctor did a b-12 test and my score was excellent actually
1500 (way over the top). He told me it take 3 or 4 times week instead of 7 days.
Please note that I don’t get the one with extras folate, etc. since I get that in my other vitamins.

From my score you can see it does work.

25

I just checked and it is vitaminshoppe.com.
5000 methlycobalamin subquinal.
The price now is $20.89 quantity 60,
Brand is Superior Source.

26

Ellen

I will let you know how the physical therapy goes, I meet with the specialist in the middle of next week!

27

Thanks Linda

I will try the sublingual B12 then! I think our local health store/ co-op sells them!

28

Hi
Good Luck
Please let me know how it goes.
I really am too old for someone to be looking up there-but if it helps-and
does not hurt-and I can get some insurance coverage-I am interested.
Thanks

29

My PT for the PN was just a bit odd but a big help. The gabapentin for me was initially prescribed for it & thank God it helped (nobody knows how bad that was!) & then the lightning went to my face. I tried the oxcarbazapine but was allergic to it. Anything new we all should share. But just glad to connect w/ someone who knows the strange awfulness of both. TY. And trust your PT-it is quite
a subspecialty (I’m a speech language pathologist who can’t talk or swallow!).

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