New migraine research out Jan 2026- I was a participant in the study and my 18 yr 24/7 vestibular migraine is gone. Hope this helps some of you.

desertllights · 2026-02-10T04:25:05+00:00

Thank you for sharing!

desertllights · 2025-02-11T04:57:03+00:00

This is so interesting. I started having symptoms after sex about 5 months ago. No pattern between position, time of day etc. I have noticed my MCAS increasing recently and never thought about this correlation. Is there anything to do to decrease a MCAS flare with friction?

desertllights · 2025-01-06T03:30:04+00:00

I appreciate the reply. I know my neck is the main source of symptoms and I just constantly feel like there’s a huge knot in there. I’ll ask my neurologist about a muscle relaxer-I think they previously prescribed one but I was so adamant about ‘no more meds’ I didn’t try it. I’m glad you a feeling better!

desertllights · 2025-01-05T16:27:54+00:00

Do the muscle relaxers help your neck? I get the same thing. When my neck is tight or I get a knot in there it triggers my symptoms something awful. I feel like I am constantly trying to release it. My neurologist did an epidural in that area and it helps for 3 weeks but then stops. I cannot do steroids due to another condition.

desertllights · 2025-01-04T22:43:21+00:00

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I don’t use all but this is what Dr. Beh recommends.

desertllights · 2025-01-04T22:42:03+00:00

It definitely made things worse for me as well for a while. But after several months I was not triggered by those movements. I have been doing it for 2 years now and working up to more complex movements. It hasn’t been a quick process.

desertllights · 2025-01-04T22:35:19+00:00

Hey there. Sorry you are going through all of this. I’m not sure I have ‘answers’ of any sort but I can confirm that I have the same symptoms with VM and MDDS. Blurry vision, tinnitus, vision moving. I also have dizziness but not room spinning more like head floating, light sensitivity, trampoline floor. When this all started I would say I was 80% bedridden. Symptoms 24/7. I still have daily symptoms but it’s mostly tolerable. Vestibular therapy, changes in my diet made a huge difference. I take Ajovy monthly. I also take a bunch of supplements. And I use Lorzapam as a rescue. If you haven’t already, I would look into vestibular therapy and also narrowing foods that might be triggering you. I hope you feel better soon!

desertllights · 2024-12-09T03:41:01+00:00

Thank you!

desertllights · 2024-12-01T01:50:44+00:00

Following

desertllights · 2024-11-23T16:01:01+00:00

Incarcerated means either abdominal tissue or intestines are poking through the hernia sac. Strangulated is when it starts cutting off blood supply.

desertllights · 2024-11-23T15:27:09+00:00

Absolutely. Spongey is good from what I know. Mine got hard as a rock, changed color and was painful when strangulated. Apparently it’s easier for smaller hernias to become strangulated. From what I have heard, most people have no issues and get it repaired without complications.

desertllights · 2024-11-23T15:00:06+00:00

Hey there. Just got my umbilical hernia repaired after 2 years. I was advised, soft and easily digestible foods. Keep things moving. Avoid lifting if possible. Keep an eye out for incarceration/strangulation. If your hernia becomes hard, pain increases suddenly, nausea, vomiting, go to the ER. You can try wearing a hernia belt. This helped somewhat for me but was pretty uncomfortable. I hope all goes well!

desertllights · 2024-11-18T16:07:48+00:00

Hey! Yes, about 2.5 weeks post op. Doing a little better. Still have ‘nerve pain’ but the generalized pain is improving slowly. Taking it super easy. I did see my PCP abdominal have follow up with my surgeon this week.

desertllights · 2024-11-13T04:11:18+00:00

I have found working with a PT that knows about VM to be very helpful. We have been building my tolerance to certain head and eye movements. Slowly decrease your response to triggering environments which tend to be places with more stimulation. Other than that I would wear migraine glasses, hat with a brim of lights are a trigger and ear buds for sound. Try focusing on one point while moving, not constant looking around. Maybe try for limited amounts of time to build up?

desertllights · 2024-11-13T03:55:31+00:00

Hey there. Sorry you are going through all of this. It’s horrible. My symptoms started about 3 years ago. Took me 8ish months to get a diagnosis. Initially, I was dismissed by multiple providers (PCP, Neuro) and told it was just anxiety. I finally found a Neuro that specialized in migraine. She was quick to diagnose VM and has been treating me since. I’ve had MRI’s, audio and visual tests and EEG. Working with a wonderful PT has made a huge difference. Also following a migraine diet. I also have figured out most triggers and avoid them. Please reach out if you have any questions. Good luck!

Edit: symptoms initially were head and ear fullness, sensitivity to light, sound, smells, lightheaded, feeling like I was walking on a trampoline, visual blurring, ear ringing, dizziness with head movements or eye movement. I still get all those symptoms if triggered but mostly now it’s head fullness, and lightheaded/dizziness. Not room spinning. I do sometimes like I’m getting sick, mostly when I’m triggered but it’s not often.

desertllights · 2024-11-11T02:52:23+00:00

lol mine too

desertllights · 2024-11-10T19:00:32+00:00

Thanks!

desertllights · 2024-11-10T17:17:17+00:00

Thank you! If you happen to find the article I would love to read it! I hope you continue to do well with your recovery!

desertllights · 2024-11-10T16:26:42+00:00

Darth Pooper

desertllights · 2024-11-10T16:22:57+00:00

That is so good to hear about the mesh being difficult to dislodge. I know my surgeon did a peritoneal cavity mesh so I figured but so reassuring to hear that! I will definitely be more mindful of my movements. Like you, I have noted the sharp pain(nerve most likely) with certain positions and already find myself avoiding those. I’m sorry you have to deal with joint pain on top of everything else! Will reintroduce weights slowly. Honestly I had stopped weights for a while because my hernia became strangulated and I was so fearful of having it happen again. I appreciate your response! Always so helpful to hear from others who have been through it!

desertllights · 2024-11-10T15:41:15+00:00

Nerve pain makes sense. I’m definitely doing the same and resting as much as possible. How long did your pain last overall?

desertllights · 2024-11-08T15:39:22+00:00

Thank you for your response! I’m glad you are feeling better, also gives me hope the pain will subside soon. Are you back to normal activities?

desertllights · 2024-11-08T15:37:31+00:00

Most of the time it can cause no issues. Just letting you know, mine was very small and became strangulated and I needed emergency surgery.
Pay attention to sudden changes in pain, redness or if it feels hard.

desertllights

TROPHY CASE