Hi! My Story & Questions

Hi all,

New here and wanted to share my story as I have been reading on here and gained a lot of hope and insight since the onset of my symptoms in June of 2022. I am so appreciative to everyone here, I have learned so much.

I am a 32 year old female. For a bit of background, last June, I pulled my neck rather severely exercising. After trigger point therapy a week later, I saw some relief in the pain. I have had longstanding neck issues/disc bulging for 10 years and get these pulls occasionally that set me back a while. A few days following the trigger point therapy the pain had mostly subsided. I then hopped down at the bottom of my stairs and upon impact, instantly had a visual aura start at the bottom of my vision (vibrating lines of what resembled shattered mirrors). I was unable to see much through this aura but it dissipated in about 40 minutes. I knew this was a classic migraine visual aura due to my mother’s history with these but I had never had anything like this, no migraine history at all. Migraine pain fortunately did not follow. I was happy to go on about my day. Little did I know what the future held.

I awoke the following day dizzy. It was uncomfortable but assumed it’d pass. I went on and pushed myself on a trip with friends a couple days later despite constant dizziness. During that long drive, I knew something was seriously wrong, everything snowballed. My symptoms have not ceased since and many are constant. My primary symptoms are visual (too many to list). The first 6 months I had dizziness but more a feeling of being on a rocking boat and being pulled to one side that was constant. I couldn’t interpret parts of my vision (like looking at a face but someone’s eyes are blank). I couldn’t make out patterns and stores were misery. The pain in my eyes and forehead was severe, as if my eyes were being pulled out of my head. Everything too bright and walking into a sunny room blinded me in a way. All kinds of visual disturbances like pallinopsia. I also have head pressure and increased heart rate upon standing. During those initial months I also had constant feeling of pure adrenaline running through my veins. It never stopped and I had a constant shake, couldn’t sit still. So many more symptoms, but you all know the drill. My strangest one that remains is some type of light distortion more than light sensitivity. It’s as if bright light/sunny days distort my vision and it’s too bright to see clearly. Anything white glows. Regardless, some of these have passed.

I have seen so many specialists, starting with 2 Opthalmologists who cleared me. I have had 2 brain MRIs (clear) and spinal x-rays and a cervical MRI confirming my known issues. I was diagnosed with cervical dystonia and persistent migraine aura by one Neurologist. He tried nerve blocks to see if Botox may help as a diagnostic but it helped the pain for a few months but not the VM. Further, multiple runs of blood tests with no significant findings. I tried Topomax last summer which seriously worsened my symptoms. I was so incredibly ill I didn’t even realize how much worse it made me until I stopped it. I then discovered the dizzy cook and promptly started the diet. I follow this diligently. An ENT diagnosed me with VM and Dr. Beh diagnosed me with vestibular migraine and PPPD, others have suggested a pinched nerve in my neck as the source to this misery. Now, my treatment since end-Sept is primarily the diet along with Timolol eye drops. Valium is a rescue med which helps quite a bit but I limit its use. I saw improvement starting these and stopping Topomax. However, I have now plateaued the last few months. I would say I am at about 60%.

At this point, my main 24/7 symptoms are everything appearing too bright, eye strain/pain, head pressure/dizziness upon standing, intermittent visual vertigo, and constant light headedness. Also, of course, the already present neck pain and pulls. I have focused a lot on examining my neck’s role as that injury precipitated this onset. I pulled my neck just rolling out of bed in February and was in pretty bad pain for a month again so it’s a complicating factor. I feel so stuck. Which do I focus on, I ask myself. What other doctors do I see? I’m considering a Neurosurgeon and also have an appointment upcoming for a Neuro- Opthalmologist. Dr. Beh last said next step was to try Nortriptyline but that scares me after my experience with Topomax. He also said my neck was possibly just a trigger. That impact jumping off the stairs makes me wonder. I also have developed some type of orthostatic hypotension or POTs, but also feel my inactivity may contribute to this.

I know there are differing opinions on this board regarding the neck’s involvement, but would appreciate anyone’s insight particularly if you had a similar experience. I just got married and feel there is so much life left to live, but struggling to determine the best next steps. Every day is impacted and I don’t get out of the house often, it has also made me an emotional mess. I am also curious if anyone has had an experience similar to the light distorting your vision. Ultimately, things just never look “right” anymore and it’s been my most difficult symptom to explain.

Thanks so much! That was a lot but there’s a lot to our stories :).

Hi! I really relate to the visual symptoms and things not looking right. All lights are brighter than they should be, and it almost gives certain lit hallways a “corridor effect” like I’m walking in a castle with lanterns, but I know I’m not! Also traffic lights “spider out”, my eyes have a hard time focusing. Sometimes this is my main symptom. I am very sensitive to medication but have gotten up to 20 mg amitriptyline and it’s been a big help. I just titrate 2.5 mg at a time and give myself several days to adjust. First week was a little rough though. As for neck pain my neck definitely tightens as my trigger load increases and mostly on the right side. I do daily neck stretches that help a little but sounds like your neck is giving you lots of trouble. Keep pushing!

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I am sorry to hear you’re suffering from similar symptoms! Also glad to hear you’ve found improvement with medication. I may try the slow titration up, gives me hope. Thank you!