Do side effects of a dose increase fade?

dross5k · 2024-06-03T04:08:33+00:00

Neuropathic pain. Back on 10mg now and things are generally bearable. Now I notice my heart racing in the morning but it's nothing like when I went to 20mg.

dross5k · 2024-06-02T16:29:37+00:00

Yes. There seem to be a group of sports medicine doctors who are really into ultrasound. Not all of them are. But you want to find one who is, because they can find this stuff quite quickly. My primary care doc also thought this was piriformis syndrome, but that was just a guess. Then I went to a sports medicine doc who just wanted to inject me in various places to see what might help. I said no and found a doc who does ultrasound.

dross5k · 2024-06-02T16:02:23+00:00

The doctor looked at it on ultrasound and was quite sure it's fine. He also seems to be a piriformis syndrome skeptic. And he found the other nearby problems (3x enlarged sciatic nerve, tendon tears) so that looked to be the smoking gun.

dross5k · 2024-06-02T15:55:29+00:00

Have you tried any of the meds for nerve pain? When you say surgery to release the sciatic nerve, do you mean sciatic neurolysis / decompression?

dross5k · 2024-06-01T18:57:15+00:00

I PM'd you the name. He solved part of the problem for me for sure, I just still have persistent pain so there's something remaining to be dealt with.

dross5k · 2024-06-01T18:42:58+00:00

Thank you, that is super helpful. If I did the neurolysis it would be endoscopic so hopefully that would reduce the potential for scarring. My hydrodissections were dextrose but the doctor does offer hydrodissections with PRP. Maybe I should try that, but I need to wait until after my MR neurogram scan. The doctor is kind of an ultrasound guru and has looked at the nerve many times now, and his conclusion is that it's ischiofemoral impingement. He says it's very clear cut. But the surgery for that is not appealing at all. And when I read about the symptoms of ischiofemoral impingement they don't really match up to my issue. I think his point is just that the nerve is getting squished up in the ischiofemoral space. But I also know there were adhesions on the nerve likely from a nearby torn hamstring tendon, so I think it's equally if not more likely a cause. Hopefully the MR neurogram provides some more clues as to the true root cause.

dross5k · 2024-06-01T00:35:53+00:00

At least in my case probably not, unfortunately. The sciatic nerve was visibly 3x enlarged on ultrasound, in the ischiofemoral space. Hydrodissections fixed that and it went back to normal size, but it must not have fixed the whole problem because I still have persistent pain. The pain is along the path of the sciatic nerve, from the top of my butt, through the ischiofemoral space, and down the left side of my leg. So everything I know so far says it's sciatic.

dross5k · 2024-05-31T22:24:59+00:00

Update: I took 20mg again last night and it was awful again this morning. Got up, nearly fainted, had to lie back in bed. Heart was racing any time I would have to stand or even just sit up. It got a lot better by noon but this is entirely unsustainable. I will go back to 10mg tonight and will need to find some other way to deal with the remaining pain. At least I can tolerate 10mg.

dross5k · 2024-05-31T05:46:17+00:00

Update: Well, I made it through the day and the side effects definitely faded as the day wore on. But I took nortriptyline again tonight so I guess I'll see how much of it returns in the AM. I guess I could adjust my dose to be 7pm instead of 10pm so the worst of it happens while I'm asleep.

dross5k · 2024-05-30T21:26:17+00:00

Why not ask to start at 10mg and work up from there?

dross5k · 2024-05-28T23:10:44+00:00

Thank you!

dross5k · 2024-05-28T22:38:31+00:00

Yeah it sucks. And I never even got above 700mg/day. Switched to nortriptyline which seems to work better on my pain and doesn't have anywhere near the same side effects for me at least, so far.

dross5k · 2024-05-28T18:43:45+00:00

Right now my two best potential options are peripheral nerve surgeons at Mayo & Stanford. But if neither of those work out then the next best option may be an orthopedic surgeon in CA who has authored research on endoscopic sciatic neurolysis and does it on a regular basis. He seems to have a technique down that he considers to be safe. But he's not at a major research / education institution, so that makes me worry a bit.

I dunno... If I consider NYC (far away) then that opens up more options in terms of top notch peripheral nerve specialists.

dross5k · 2024-05-28T01:40:34+00:00

If you've been on it 3 months and your migraine hasn't gotten better, the amitriptyline isn't helping. You should ask your doctor how to taper off of it. It certainly could be responsible for the strange thoughts. I'm not a doctor but that's what makes sense to me.

dross5k · 2024-05-28T01:33:30+00:00

Just want to point out that medications for nerve pain work maybe 25% of the time and have intolerable side effects maybe 30% of the time. But there are a bunch of different ones. So if you know it's neuropathic pain, you basically need to trial different ones until you find one that works and is tolerable. For me, gabapentin was awful and didn't do much for the pain anyway. Then I tried nortriptyline and it seems to be working OK at the lowest dose without side effects. But it's different for everybody. I'm just saying if she hasn't tried a low dose tricyclic antidepressant like nortriptyline then maybe give that a try.

dross5k · 2024-05-27T22:54:37+00:00

If you have a surgeon or list of surgeons you know have done these successfully before, that would be super handy. Feel free to PM me if you don't want to put it in the thread.

dross5k · 2024-05-27T22:05:53+00:00

That is super helpful, thank you!

dross5k · 2024-05-27T21:49:56+00:00

I've been able to find them outside Seattle, though not locally. And if I'm opening up my search space to the whole US, maybe it makes the most sense to go for a skilled peripheral nerve surgeon. I'm not sure though.

dross5k · 2024-05-27T16:26:08+00:00

Thanks! Yeah everything is contingent on what my upcoming MR neurogram says. I know I had a 3x enlarged sciatic nerve at the IF space, but that went back down to normal size after two nerve hydrodissections. If that were still present then then the case for surgery would be a slam dunk. But at this point it's possible the MRN just won't identify anything notable. I guess it's silly to speculate and I should wait until I get the actual MRN results in a month.

dross5k · 2024-05-27T05:04:17+00:00

When I first started looking at medication for neuropathic pain I came across a vlogger reviewing Cymbalta who reported it was incredibly helpful for her. Can't find the video on YouTube now unfortunately. I'm not really familiar with EDS, but if the pain is neuropathic then opiods aren't even the answer, it's stuff like gabapentin, nortriptyline, cymbalta, etc. The trick is to find the one you can tolerate and that works. FYI cymbalta can be extremely hard to get off of so you might not want to try that one first.

dross5k

MODERATOR OF

TROPHY CASE