Seeking help for treating infrequent but devastating Brainstem/Hemiplegic/Vestibular migraine symptoms

[whymustidoth]

Hello, I am new here and looking to speak with anyone that has experienced Basilar (Brainstem) Migraines combined with Hemiplegic or Vestibular Migraines. I'd love to get your take on how best to seek treatment as my episodes are infrequent but devastating--as in temporarily locked-in.

I'm still recovering from the last back-to-back migraines from 2 months ago. I'm struggling with ongoing vertigo, an overactive sympathetic nervous system, mental health decline with episodes of panic from what seems to be--changes to neurotransmitter functioning/levels, and continuous occipital neuralgia.

The Neurologist sent me to a Spinal Physiatrist who referred me back to the Neurologist stating he couldn't help. The Neurologist suggested Propranolol but it's not suggested for hemiplegic migraines as it is a vasoconstrictor med. (My concern is that I experience stroke symptoms during the migraine and this last one had my systolic BP at 225/?) The only thing that seems to be working is repeated trips to the chiropractor along with lots of nerve and muscle related meds to calm my body down. I also experience adrenal insufficiency and have had to raise my hydrocortisone meds to compensate for the panic I experience that is related to physical and emotional stressors. I'm feeling pretty helpless right now.

[bamboo89]

Oh dear, that all sounds truly awful... I have suffered with recurrent vertigo on one side of my head for years, along with aura migraine (visual disturbance), separate migraine headache and on one occasion, hemiplegic migraine, and yes, they thought I'd had a stroke, Likely cause of the hemiplegic attack was eventually attributed to the state of my neck, but its not bad enough to risk the corrective neck surgery yet.

I have got rid of the aura/optical migraine though, entirely by accident; I gave up all dairy completely months back for another reason, and the visual disturbances completely disappeared, not had one since, though I'm still left with periodic pulsatile tinnitus and dizziness on the left side, along with very occasional migraine headache. It's a huge relief to get rid of the visual disturbances and some of the headaches - they'd got so bad I was having at least one a day, sometimes 3 or 4, and they were quite disabling, making me feel quite ill. I'm fairly sure the tinnitus and dizziness are caused by my neck though...along with the one sided headache/migraine.

I'm afraid none of this will be particularly helpful to you, (I'm assuming you've tried excluding certain foods) but that's all the experience I've had with being a migraineur.

[whymustidoth in reply to bamboo89]

jwilliamsb, thanks so much for responding to me so long ago! I was such a mess! Weeks went by where I was barely cognizant. Your insight was so kind to share. I ended up relocating from living out of state as I couldn't fend for myself so had to go home. It took about a year to calm my nervous system down. Lots of monitoring-- heart, brain, vascular, different meds, botox, nerve blocks, but I'm feeling "normal" again. Isn't it interesting how our brain and nervous system controls so much of our reality and how we function and view our self? I hope you are continuing to do well with your modified diet. Internal peace and physical well-being is such a gift!