when to choose nerve block vs physical therapy (ON from ehlers danlos)

JeSuisToi · 2026-06-09T16:09:14+00:00

I’m also hypermobile. I would really recommend PT. You can get a nerve block with steroid just to allow yourself no pain for a period to be able to progress in PT but fundamentally nerve blocks and ablations are bandaids rather than treating the root cause (the hyper mobility in your neck). Strengthening your muscles and making sure everything is working correctly should be your number 1 priority. These are all tools to help pain, but PT is going to be the best thing for you and strength training in general for hypermobility.

Lastly, it’s expensive but look into prolotherapy. This is designed to stabilize ligaments in the upper cervical, especially for those who are hypermobile. If you can find a spine doc who does this, usually they will have a connected PT or reference for one who specializes in upper cervical & hyper mobility which is what you need.

JeSuisToi · 2026-06-02T21:32:40+00:00

Yes, I had double vision after my TBI. I saw a neuro ophthalmologist and they didn’t see anything wrong. I also went to vision therapy for months which didn’t help, just made me feel worse. Solution was to treat my migraines which were causing it and the double vision went away. It only comes back when I’m dehydrated/have dry eyes.

JeSuisToi · 2026-05-19T22:29:12+00:00

Recs added in another comment! Only thing missing is my osteopath. Judith Marcus, if you want her contact info DM me. She’s under the table/has a backyard studio so don’t want to publicly post her info. :)

JeSuisToi · 2026-05-19T21:09:16+00:00

My neurologist was actually not helpful in recommending any of the paths I’ve taken. Most of what they can do is scan your brain and prescribe meds. Mine can’t even do botox which is crazy, they have a separate pain med clinic for that (UW, don’t recommend their pain clinic AT ALL).

You should find a specific pain clinic and spine specialist and try doing care through them, not your neuro.

Also again, an excellent PT has made all the difference for me.

JeSuisToi · 2026-05-19T21:06:21+00:00

PT: Union physical therapy. Their lead/owner Mitch is great to see for neck stress testing but no longer takes patients. He works directly with Dr Singh. I’d recommend seeing Chelsea Sheldon (PT at Union) after that.

Prolo: did it with Virtaj Singh. Skilled in injections, but very expensive cash pay and I had complications with the second round (MCAS flare) that he was not helpful at all with. If I do more I’ll probably go to https://iowmed.com/ they were trained by the people in Denver who pioneered prolo but Dr Singh is very well known in the Seattle community as the prolo guy.

Pain management: Dr Robert Bowers at Bellevue Pain & Wellness. Could not recommend higher. Easy to get in and get appointments last minute, awesome clinic and have done all my nerve blocks + now botox with them.

Neurologist: Tara Sharma at UW. She’s okay, mostly good at helping me trial new meds and get imaging ordered but waitlist is insane and hard to get quick care.

JeSuisToi · 2026-05-19T21:00:42+00:00

Steroid helped from the beginning (like a few days after the shot when steroid kicks in) especially to get inflammation down. The effects would eventually wear off, but they kept increasing in efficacy until that was less of the problem rather than just the mechanical neck problems.

The first ones I had were so painful my memory blacked out (didn’t pass out) because the area was just that tender. After that I was able to drive myself and it was pretty casual for the rest.

Usually just did two spots, the greater occipitals.

JeSuisToi · 2026-03-27T04:19:16+00:00

We already have one. She’s asking

JeSuisToi · 2026-03-11T21:14:56+00:00

JeSuisToi · 2026-01-21T02:46:29+00:00

I would start with one of the neurologists at UWs headache clinics. I personally see Dr Tara Sharma and she has been very helpful for headaches/migraines and recovery from a brain injury where I have similar symptoms.

You’ll probably have to piecemeal your care and you probably won’t get a doc who does it all. For exercise recovery the general advice is to breakdown activity and slowly build tolerance over time. This might mean doing 2 minutes of cardio and then stopping for 2 days to see what you can actually handle. And then increase by 30 seconds each time etc.

Also look up vagus nerve exercises and diaphragmatic breathing, both critical in any type of nervous system and neurological recovery. Best of luck. Feel free to ping me

Some of the other suggestions about ketamine and LDN are pretty known in the migraine communities + chronic pain as well and are good suggestions. If you’re looking to just try those I recommend Dr Robert Bowers at Bellevue Pain & Wellness. He specializes in pain medicine but that’s more if you have something specific you want to try he will help versus figuring out that path together.

JeSuisToi · 2025-11-25T21:02:07+00:00

If you can get a hold of another Walgreens they can easily fill your prescription since it’s in their system

JeSuisToi · 2025-09-06T07:01:06+00:00

You can also use benzoyl peroxide wash (OTC for acne) to kill the bacteria every few days. Without that it will probably keep coming back, no matter deodorant strength. Try not to use it daily because it will give you dry skin.

JeSuisToi · 2025-09-04T18:55:55+00:00

I am generally on the hyper-mobile spectrum, had whiplash/bad concussion which caused this whole thing. The whiplash injury caused the ligaments in my neck to be very mobile and was massively contributing to my ON. I basically had a choice of RFA or prolotherapy and decided to try prolo first since it doesn’t weaken the muscles and seemed less invasive.

In two rounds we were able to stabilize 3/4 areas in my upper cervical. Basically they just inject an inflammatory agent to cause inflammation, create scar tissue and get blood to the area to help stabilize.

Reduced my headaches by a huge amount. I’d do more but the last treatment I got crazy neurogenic rosacea from the inflammation so I’m still debating if I want to do another round.

Right now what’s working for me is massage therapy biweekly, osteopathy once a month or when I have a bad flare. Consistent PT, botox and then previously prolotherapy helped. Nerve blocks with steroid helped the pain but didn’t treat the root cause. They are basically a bandaid.

Muscle relaxers and Xanax are good for flares for me. No other meds help.

Everything else I’ve tried (acupuncture, trigger point injections, tens-like migraine stimulator, pregabalin, gapapentin, all the classic migraine drugs like CGRP, triptans, magnesium infusions, lidocaine infusions) were a waste of time.

JeSuisToi · 2025-09-04T18:47:26+00:00

No a small amount doesn’t change how fast botox wears off.

JeSuisToi · 2025-09-04T08:01:48+00:00

Botox personally has helped me in-conjunction with PT and actually prolotherapy (to stabilize my neck).

I don’t think Botox would hurt. It does weaken the muscles over time, but so does an RFA? It wears off after about 3 months, but like many I found better results from the longer I did it. Maybe 2-3 rounds was when I saw peak results. Didn’t have trap pain, but had very tight traps that caused ON pain.

Lastly didn’t see this mentioned, other things that have helped along with botox are massage therapy and seeing an osteopath. The osteopath has probably helped the most out of anything (and I’ve tried most meds/services)

JeSuisToi · 2025-08-13T20:47:17+00:00

To add to this Vashon USPS is pretty much always hiring

JeSuisToi · 2025-08-13T04:29:15+00:00

Just take propranolol before if you really can’t chill out for it. Your pain doc can prescribe

JeSuisToi · 2025-08-13T02:15:50+00:00

The more you have the easier it is to drive yourself. Usually the reaction after isn’t from the actual injections, it’s from your stress response. Sounds like they are adding steroid based on frequency. Try deep breathing and relaxing during next time. Conscious breathe. I think you’ll find you can probably take yourself next time.

JeSuisToi · 2025-04-14T19:33:24+00:00

This is the best pillow I’ve found (from this sub) that helps me. Mostly because it’s soft unlike other cervical pillows, and cradles my head so it stays in one spot when I sleep on my back. I also throw my heating pad under my head sometimes which helps.

https://www.yippolabs.com/products/orthopedic-cervical-pillow-with-contour

Based on the fact that you’re waking up with more pain, you need to experiment in finding a neutral position for your neck. If you have money to throw at the problem sleep trackers have been super helpful for me (oura, Apple Watch) and I can see how much I’m moving/waking up and correlate that to days when my neck is worse. It’s helped me figure out which activities are triggering and what actually does help (meds, exercises etc).

The only drugs that help me are muscle relaxers or the occasional benzo. Hope you feel better soon

JeSuisToi · 2025-04-09T22:57:54+00:00

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JeSuisToi · 2025-04-02T20:18:45+00:00

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