Where do I begin?

By nowiknow

1 min read

Hello all,

I was recently last winter diagnosed with vestibular migraine. The PA I was referred to was insistent I trial a medication despite it being one that was a no no for someone with a mast cell disorder. I tried it and failed miserably with side affects that were intolerable. After she prescribed yet another on the no list I decided to not return to her. Recent migraine episode reminded me of its presence and that I have still yet to discover what will help me with it.

Should I look for a migraine specialist? I do have an appointment this month with psych NP that is known for prescribing for those who have depression along with other health conditions. A friend I met online from my state recommended her so will see how it goes.

Meanwhile I am wearing sunglasses inside the house and my head is full of questions about how many of the symptoms I experience are attributed to the evil and mean migraine.
How does a person know where to start as a place to go for help? I find myself with a mixed up brain that has a hard time organizing my thoughts let alone making a decision. Always have this fear that episodes will become permanent.

Thanks for listening!

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Joanna Bodner Community Admin
Hi <inline-mention user-id="3767316" username="nowiknow"/> , I am so happy that you are reaching out for support. Migraine takes such a tremendous physical & emotional toll that it is absolutely so hard to (as you said) know "where do I begin"! Such a valid & important question to ask! I am very happy to hear that you have an upcoming appointment with the NP, but if you can, I would also encourage you to find a board-certified headache & migraine specialist (especially when managing multiple conditions). Let me share a few resources with you as you wait for others to possibly share their feedback & experiences. <a href='https://migraine.com/blog/healthcare-providers-turn-to-for-help' target='_blank'>https://migraine.com/blog/healthcare-providers-turn-to-for-help/</a> <a href='https://migraine.com/blog/why-we-ask-about-your-doctor' target='_blank'>https://migraine.com/blog/why-we-ask-about-your-doctor/</a> <a href='https://migraine.com/blog/top-places-to-find-support' target='_blank'>https://migraine.com/blog/top-places-to-find-support/</a> Keep us updated if you can & let us know how your appointment goes! Reach out anytime.
1. nowiknow Member
 I had talked to my dentist awhile back about some of my issues. He is wondering if I could have tmj and has said he would refer me. It’s hard to know where to begin. Wearing sunglasses IS helping somewhat. I am living in the land of fatigue and brain fog.
2. remotecontrol Member
 Welcome to the club! The small amount of solace is that many of us manage the good day, bad day fog, fatigue and often doubt. My personal voyage took numerous neurologists, ENTs and other specialists to get a modicum of appropriate care. It is frustrating, but unfortunately common. Many folks with vestibular migraines get advocates that help out in appointments and just managing the many interactions needed.
glassmind Member
Thank you for sharing your experience. Do seek out a nuerologist or migraine specialist! Remember you have the right to refuse any treatment. Be firm but persistant if you do not want a certain precription. Ask what other options are availible or for a second opinion. May the upcoming NP appointment be the first of many steps toward better treatment for you.
1. Joanna Bodner Community Admin
 I just have to share <inline-mention user-id="3906820" username="glassmind"/> that your support here is amazing! We always love hearing from you! We are truly lucky to have such amazing members like yourself sharing your experience & continued support with others. Thank you!!!!
amyperszyk Member
I, too, suffer from vestibular migraines. Just getting to that diagnosis is difficult! I must tell you that my neurologist (a headache specialist) put me on Propranolol, a blood pressure medication, and my life was changed! The medication is used to treat migraines. I would really recommend it to anyone suffering from this and is struggling with treatment.
1. nowiknow Member
 I have read of that being one of the treatments. I am already on a different beta blocker, bisoprolo, and wonder if I should change over to that one instead?
beachhead Member
I was diagnosed with vestibular migraines 10 years ago with extreme vertigo after my car was hit by a truck in a hit and run accident. If I was driving I would have to hold my head straight with one hand and drive with other and usually had to get off freeways to back roads as cars flying by made me nauseous and dizzy. I have found great relief with the help of a vestibular therapist in an ENT office here in Atlanta. Through medication, vestibular exercises and Botox by my neurologist I am doing so much better. I still stay on back roads and sometimes hold on to shopping carts for dear life in stores with fluorescent lighting or loud noises but I have thankfully come a long way. I almost think I am normal or cured sometimes until something triggers me and I’m headed for the nearest person or something to hold on to. Good luck with finding what works for you.
beachhead Member
Yes a migraine specialist is a must. It took me five years of numerous ENT and other specialists who said I had sinus headaches, TMJ, allergies and “all in my head” no pun intended among other diagnoses. Propanol is also one of the medications that has helped me and a very low dose barbiturate to calm the nerves in my ears which always feel full especially with barometric changes. Sadly it can be a long journey and a lot of trial and error. You just have to be your own advocate which is hard when you feel bad and keep the faith.
lori4knee Member
I am a severe chronic migraineur who was recently diagnosed with mast cell last year after an an adverse reaction to the new cell based flu shot. My life has spiraled worse since then. New vestibular migraines from all the masking, migraines with auras that I never had before and the loss of sight in half my right eye. I have extreme referred nerve pain with my migraines and my neurologist struggles to keep me balanced and I spiral a lot into migraine flares that can last as long as 35 days. It can be depressing but I know she and my other doctors work tirelessly to pull me back out of the pit! It is indeed tough to be severe. I take aimovig 140, trakendi xr 150, Botox every 10 weeks, weekly migraine massage, 2 daith piercings . I think doing OT and pain psychology is a must and helped me immensely. I am allergic to magnesium supplements and infusions and must be careful of all supplements. I am very sensitive. Weather, stress, anxiety, and artificial light and fatigue are my biggest triggers.
1. Holly Harding Moderator & Contributor
 <inline-mention username="lori4knee" user-id="3810856"/> Gracious - what a journey and what a wealth of wisdom you have earned in the process. We are lucky to have you with us sharing all that you have learned along the way. You do indeed sound wise, grounded and with perspective, despite what I personally know about the way chronic migraine can do to throw perspective out the window at times. You have been incredibly proactive in your response to this challenge and that is inspiring to hear. We are with you in this and so grateful you are with us! Please do keep in touch. Warmly- Holly (migraine.com team).