Status Migrainosus

I have chronic migraines with bouts of status migrainous for over 50 years. I get Botox to my upper back, neck and scalp every three months to control the migraines, and oral med ( sorry, I’m on vacation and don’t have that med with me right now - as I just got my Botox on the 22nd and don’t recall the name) to control the status migrainous bouts. The med pretty much knocks you out within 30 minutes of taking it and have to take it for 10 nights in a row, but it works pretty well. My neurologist prescribes it.

burtallman @burtallman

It wasn't until topiramate was increase to 100 mg am and pm, that I started noticing a positive result.

Question - do you have a stiff neck - turn head left and right (70 degrees is normal)? If so, there is Physical Therapy - Dry Needling might help (it took me 9 months of weekly session, then once a month maintenance mode for me) and muscle relax medication Baclofen.

Since I have many puzzle pieces (symptoms), I have a few providers.

Best Wishes,
🍀

@fourleaf I also had luck with the Topomax at 100 mg twice a day for many years and also have the stiff neck with apparently some cervical nerve issues I am doing PT for. I did dry needling for my back. I will try it for my neck! Just a sad note on the Topomax I had to recently get off of it due to peripheral neuropathy as a side effect and issues with severe osteoporosis. I am working on the taper now and will go on a blood pressure med I hope that will work. But the neck exercises have helped me during the taper a lot. Good to talk to others in a similar boat.

Could you have vestibular migraine?
If so, the only thing that worked for me was aggressive vestibular physical therapy, Ativan .5 at bedtime only and time. Read the book "Victory Over Vestibular Migraine" by Dr. Shin Beh. He's the guru for vestibular migraine.

Status migrainosus sounds incredibly exhausting, especially when a migraine lasts for days. If you’re dealing with one that won’t let up, it’s important to contact your healthcare provider, as prolonged migraines may need specific treatment. I hope you’re able to get some relief soon.

@mbixler Hopefully you are back from vacation by now.
Can you tell us the "wonder" medication prescribed by your neurologist?
I certainly could use it!
Will be starting Botox for the first time...but I definitely need something new to help me knock out the never ending migraines I have while under attack.
Thank you! 🙂

@fourleaf please tell me about Baclofen. My neurologist prescribed this for me. I have migraines 24/7.
I have decreased range of motion in neck and pain in the cervical paraspinal musclr. I have arthritus in my cervical spine. He says it may help with the connection between the nerves in my neck and head. I hestitated to start this medicine…always worried about side effects. I
am supposed to start with 5 mg at bedtime for one week. Then 10 mg.
I would really appreciate any information you have about this medication and how it has benefited you.
I have not taken other meds for my migraines yet. My doctor is starting with this.
Thank you very much.

@maxieg
Good Morning, Baclofen (10mg 3x/day) helps relax my neck muscles. I can't remember experiencing any side effects, let your doctor know if you have any (note - every person is unique). Baclofen plus Physical Therapy - Dry needling plus Stretches made a difference to reducing the constant Migraines - removing the tension part. I caution against explaining too many of the stretches due to they were Physical Therapy directed. I will explain two (of seven) of them - 1- gently turn your head to the left and then to the right (slowly) 30 times 2 times per day; 2- gently tilt your head all the way down (chin to chest) and then gently tilt your head back as far as you can 30 times 2 times per day - it's also a good warm up. When I started, I had 20 degree motion to the left and right (note- 70 degrees considered normal). If after 4 weeks you notice improvement, ask your Neurologist about referring to Physical Therapy - Dry Needling. PT can evaluate you for additional stretches. Oh, I have learned adding more reputations is not a good idea.

I review the Mayo Clinic's drugs and supplement to understand what I am taking. Here is a link on Baclofen -
https://www.mayoclinic.org/drugs-supplements/baclofen-oral-route/description/drg-20067995
Best Wishes,
🍀

🍀Thank you so much for your speedy and very detailed reply.
Sounds like you have made great progress with your program. The baclofen, pt, stretches and along with dry needling. That’s wonderful.
I am 78 and diagnosed with Central Sensitization syndrome and have been managing my chronic migraines with exercise, stretches, pt strength training, along with other very vital tools learned through the Mayo Pain Rehab Center program.. I was doing pretty good but now the intensity of my headaches has increased. And, I am losing ground daily. PT has been recommended specifically for my neck. You have provided hope and motivation.
I also may try the baclofen.
(May I ask your age?)
Once again, thank you so much for taking the time to let me know about your experience with baclofen.

@briarrose My neurologist prescribed Olanzapine (Zyprexa) off label, to basically knock me out for 8 hours or more. It didn’t stop the episode, per se, but caused deep relaxation. My migraines are caused by cervical dystonia - constant muscle spasms of the neck, upper back and shoulders, also involving the muscles of my scalp. My migraines are fairly well controlled by Botox every 3 months now, with breakthroughs treated with Ubrelvy and Amivig injections done once monthly to help prevent breakthroughs. I haven’t needed the Olanzapine for several years now, as the current treatment is keeping the status migrainous at bay. Hope this helps. FYI only take it right before bedtime, as it knocked me out cold within an hour of taking it. Everyone reacts differently to medications, so talk it over with your neurologist to see if you would be a candidate.