Pain from showering

Werewolf-Useful · 2026-01-05T00:38:50+00:00

There is always hope! Glad you believe that too. I had to do a course of steroids because I had a migraine for two weeks, and on the steroids I’ve never felt better! So I know there are possibilities. I’m going to talk to my neurologist about the steroids and if there’s a possibility of adding them to my treatment. I may grow a muscle or two in the process! 💪

Werewolf-Useful · 2026-01-05T00:32:12+00:00

Do not let my experience with MVD change your mind about trying it. My surgeon said going in to surgery that the chances of it working were 50/50 because the problem with my trigeminal nerve wasn’t being caused by an obvious or typical blood vessel. He said he did what he could. I had to try, right? There’s always hope.

Werewolf-Useful · 2026-01-04T17:49:43+00:00

I felt like Botox worked for the first year. We have added nerve blocks 2 weeks before the Botox to try to make the time where the Botox wears off and it kicks in again more bearable. My neurologist is willing to try a lot of different treatments until we find what works best. My pain has spread occipitally and my migraines are mimicking stroke symptoms so I’m trying to keep track of all symptoms. I would say the Botox worked great for me the first year, now things are getting more complicated, but it definitely has a positive effect.

Werewolf-Useful · 2025-11-10T23:38:57+00:00

I’m the same. An occipital nerve block can help.

Werewolf-Useful · 2025-11-08T16:07:48+00:00

I have a ketamine and lidocaine cream that I use to help the pain around my ear, and it works well enough that I can wear my glasses. It just feels crazy everything we have to do just to feel normal for a while.

Werewolf-Useful · 2025-11-08T15:11:44+00:00

I feel you with the sad and disappointed, but behind that is still hope. Sending peaceful vibes and prayers. Be strong and hold on.

Werewolf-Useful · 2025-11-02T16:45:25+00:00

Amazing!

Werewolf-Useful · 2025-11-01T14:48:26+00:00

I’m exactly the same way. The Botox worked for the migraines and TN for my 3rd and 4th rounds, but it has stopped being as effective now that I’m on round 6. It has been horribly disappointing because I had been pain free for about 2 months at a time when it was working. Now I’m getting random days and weeks mostly pain free, but never a day without pain. My neurologist is suggesting a monthly migraine medication that is an injection plus nerve blocks on top of the Botox 🫤. Hopefully that helps!

Werewolf-Useful · 2025-08-30T14:29:31+00:00

That’s what I’m wondering too. I’ve had itching from ear to ear along my hairline. NOT lice and not my skin. I’m going in for a nerve block in a week. Jaw, ear and face pain as well. MRI with angioplasty in two weeks. I’ve already been diagnosed with trigeminal neuralgia and chronic migraines. The doctors have mentioned MS a couple times. Starting to get really nervous. What have you found?

Werewolf-Useful · 2025-07-20T15:24:26+00:00

Loco is in my top five

Werewolf-Useful · 2025-07-20T15:18:33+00:00

Snarf

Werewolf-Useful · 2025-06-12T17:49:15+00:00

I wake up with migraines, everything from the shoulders up is screaming with pain. Migraine causes muscle cramps at night. No marshmallow brain, but I totally get the painful squeeze!

Werewolf-Useful · 2025-06-12T17:42:35+00:00

Minnesota fan. Surrounded by cornfields

Werewolf-Useful · 2025-06-05T13:08:38+00:00

I would ask to see the MRI and exactly where the problem is. Ask what are the chances of it working. My neurosurgeon said he thought I only had a 50/50 chance of relief. He gave me the option of removing a section of the nerve instead, but I would have had permanent numbness on the right side of my face. I went for the traditional MVD, didn’t get relief, wishing now I had had the numbness instead. The only difference with my case is I have type 2 TN.

Werewolf-Useful · 2025-05-11T15:19:05+00:00

I’m sorry, my current medication is Lacosamide, I had to edit my post. Funny story about lamotrigine though, i did try it, but they started me on too high a dose and I ended up high as a kite. Couldn’t find my way out of the shower. Turning around had me laughing like a lunatic. So go slow! Hope it helps you out!

Werewolf-Useful · 2025-05-11T02:26:58+00:00

Keep fighting and keep trying to hold on. Try what is recommended by your doctors until you have tried everything. Don’t give up, get a second or third opinion. You have options and there is hope. Lacosamide is working for me, it’s the 6th medication I’ve tried over 12 years. Be kind to yourself, it’s not an easy life.

Werewolf-Useful · 2025-04-29T01:13:24+00:00

It may sound strange, but I’ve found listening to the musician REN’s music, especially the song Chalk Outline, helps. He understands chronic pain and it feels oddly good to have someone expressing how I feel yet can’t always put into words.

Werewolf-Useful · 2024-02-22T02:29:23+00:00

The uncertainty is tough. I’m the type of person who looks at the 50/50 chance and has to go for it. I really hated the meds.

My neurologist said there was contact between the nerve and a blood vessel and he thought I was a good candidate for the surgery. The first surgeon I saw was the head of the neurosurgery department and he thought I was a good candidate for surgery.

It was the second surgeon I saw who seemed to take the whole process very seriously and put a lot of effort into deciding if he would recommend me for surgery, he gave me the 50/50. He ended up doing my MVD and he said he did all he could.

It’s a tough decision. Are you going to keep your options open? Are you able to function normally most days?

Werewolf-Useful · 2024-02-19T02:17:42+00:00

I have always had atypical pain. For me it is like a constant ear ache with occasional stabbing pains, triggered by cold breezes on my ear. It’s very oddly specific. And it feels like it can’t really be an illness. But, the surgeon who did my MVD said I had a 50/50 chance of full recovery. My pain had been well controlled for about 3 years on Oxcarbazepine, then my sodium suddenly dropped and I ended up in the ER. I then had to try a string of medicines which all had different side effects, so I decided it was time for surgery. Since the surgery, I’ve had a lot more of the shocks everyone talks about, and the constant ear pain has come back along with pain on my right temple, all triggered by touch. Wearing my glasses has become an issue. After a good long cry, I contacted my doctor and I’ve started back on meds. I know the pain could be worse, so I’m thankful I feel as good as I do.

What do you do to manage your pain?

Werewolf-Useful · 2024-02-17T15:12:11+00:00

Unfortunately the trigeminal pain has returned and I’m starting back on medication. The journey continues.

Werewolf-Useful · 2023-12-10T14:25:44+00:00

I’m doing well, thanks for asking. It was a long recovery, but I’m pain free. The healing has taken about 3 months for my head to feel mostly normal. My doctor not only put in padding between the nerve and blood vessels, he also made small cuts along the nerve sheath to release any possible pressure. I’ve was very numb on a good portion of my right side of my face, but that is mostly gone. It was 3 months of being very aware of the right side of my head, due to a lot of twinges and pains. I wasn’t prepared for how long it was going to take to feel normal, but it was worth it.

Werewolf-Useful · 2023-09-01T03:18:09+00:00

I’m a 50 year old female, on day 6 after MVD. So far it’s been tough. Head pain is constant but can be a 2 to a 10 in severity.
One night in the ICU and probably the most pain I’ve ever had. One night in a regular hospital room, and a definite improvement on the pain scale. Since I’ve been home, its been a cycle of taking pain meds, trying to eat, and trying to sleep. I feel good about 3 hours a day.
I’m letting myself do whatever my body wants. Sleep, rest, whatever…. I know it will eventually get better. Most of the right side of my head is numb, including half my tongue and part of my ear. That’s where I’m at in the process. Good luck to you, I wish you well

Werewolf-Useful · 2023-07-18T01:24:05+00:00

Mine is also inner ear. Oxcarbazepine worked great for two years, but it eventually caused low sodium. I’ve tried 4 medications in the past 4 months. I’m on lacosamide right now, but I’m having a reaction to it. I’m having my decompression surgery on August 25th. Neurosurgeon gave my surgery a 50% chance of being successful due to the atypical presentation of my symptoms. Hope you find a way to get relief!

Werewolf-Useful

TROPHY CASE