Hello Everyone,
I’m new here and very frustrated with what has been going on with me for the past 6.5 weeks now. I do apologize for the lengthiness…
About my past first…
I started getting headaches in 2012, which I found out were hormonal. Initially excederine would work then it didn’t. Then when I had a 3 day long headache and trip to ER, which they thought I had meningitis so I let them do a spinal tap (which was negative). They tried Tylenol 3 worked and it worked. Then it didn’t. Then in Jan 2014 with another 4 day long headache and trip to ER and cocktail mix it didn’t work. So my neurologist admitted me to the hospital for 3 days which he was able to get rid of my headache. After that he gave me sumatriptan to use, which has worked ever since. I get a headache and I take sumatriptan it would go away within an hr. I barely got headaches because I only got 9 sumatriptan pills and they would last more than a year or two.
My vertigo episodes started in 2013, which my first one I believe was stress related and was really bad. I was really dizzy for a few days but it went away. Since then I have only had 5 episodes, just a random times. Two of them were since May 2023.
On 10/23/24 around 930pm I was working and felt a little unbalanced when I got out of my car to go to the passenger side to get something I couldn’t reach. I noticed I was a little more unbalanced when I went to go speak to someone. On the way home, around 1130pm I felt a bit dizzy. I figured it was my normal vertigo episode kicking in. When I got home, I wanted to use that Divertigo oil but forgot I ran out and decided I would run to CVS in the morning. I also noticed I was more unsteady on my feet than I normally am with a normal vertigo episode. I was stumbling more and I even kicked over my baby gate (that’s for my dogs) that has been there for the past year. I didn’t pay too much mind, I just did my normal night routine and slept on my left side because when I sleep on my right, during a vertigo episode, the room starts to spin clockwise. On 10/24/24 I woke up and went immediately to CVS to get the Divertigo oil, to put behind my ears, and got the vertigo meds. Then I tried to walk my dogs and I was stumbling everywhere. Even the sun appeared to bright for my eyes. When I have a vertigo episode, I feel a little unsteady but never stumbling, just mainly dizziness, which lasts 72 hours. I called my primary care and scheduled an appointment for that afternoon. Well since I’m an exercise junky, I decided to go to the gym anyway. My friends saw I was stumbling a lot and even thought I was drunk. I just told them I had vertigo and we laughed it off. I was good with most of the crossfit movements that day until I got to bench press and the world started spinning.
I went to my appointment and that’s when things started going downhill. My doctor asked a bunch of questions and then asked me to do the shin test, when you take one foot and run it up and down your shin. I could do it with my right foot but I could barely do it with my left. My doctor even saw some nystagmus in my left eye. She noticed some other things, I guess, enough to alert her that she thought I might be having a stroke. She said she was on the fence of stroke and vertigo and wanted me to go to the ER. So I called a friend to come pick me up and take me. At the ER, I needed help walking because it felt like the floor was tilted and I couldn’t walk straight or keep my balance. When the nurse asked me to do certain things it was like I could comprehend but I couldn’t get my left side to function correctly. So now at this time I could barely walk, I was dizzy and unbalanced, my left side wasn’t functioning properly, and I was talking kind of slurred/slow. They decided to admit me for observation for a possible stroke and wanted to get an MRI. At this time, I finally started getting a headache. They did CT scans and finally after days of being there and trying to get an approval for an MRI, due to having a bladder stimulator, they got one done. Initially they told me I had a stroke but later said the MRI said I didn’t. I ended up staying in the hospital for 7 days, got out 10/31/24 and they left my diagnosis as a complex migraine and to follow up with a neurologist.
My symptoms in the hospital were dizziness (which they gave me meds for and it went away), left side weakness both hand and leg, headache (constant in the temporal lobes mainly left side), eyes sensitive to light, left eye peripheral issues, complex movement skills were off (couldn’t walk on heels or tip toes, couldn’t do heel to toe) balance/coordination was off (felt like I was getting on and off a treadmill), had tingling in hands and feet.
For my headache, initially they wouldn’t give me Sumatriptan, which typically helps with my headache and make them go away quick, because they wanted to wait to get the MRI done. But of course, it was delayed until 10/29/24 because of the bladder stimulator approval issue. So they tried Firocet, Depakote and then finally Sumatriptan and even the main migraine cocktail plus steroids but my headache was persistent and still wasn’t going away.
My CT scans w/o contrast were clear, but my CT scan with angiogram showed a small cluster of vessels, measuring 7 x 4mm, within medial aspect of the left temporal lobe which could be a vascular malformation. However, my MRI which only did MRA on the circle of willis, said everything was clear.
After leaving the hospital I had the following symptoms left side weakness in the leg not really noticeable in the arm/hand, headache (which was constant in the temporal lobes mainly left side, mostly pressure but when angry it migrates to the front) felt like swelling over my left eye, both eyes sensitive to light, left eye peripheral issues, complex movement skills were off (couldn’t walk on heels or tip toes, couldn’t do heel to toe) balance/coordination was off (felt like I was getting on and off a treadmill). I also couldn’t look down to the left or lean my head to the left or I would get dizzy.
I went to training course for two, which I thought would be easy for me since it was only sitting, doing math equations and listening. Well this is when I found out that anything scrolling, fast zig zag movements and camera bouncing made me dizzy and nauseated. So I started closing my eyes during those type demonstrations. Driving was a bit of a struggle initially from the head movement, but I soon learned to compensate to be able to turn and look in my blind spots.
I finally went to my first neurology appointment on 11/8/24, which I didn’t see the neurologist because he had covid but I saw his PA. The PA believed I have a hemiplegic migraine. I brought up the possibility of an AVM and he said my results should clear, but my CT angiogram didn’t say clear. So he said basically because I had migraines in the past this is just a migraine and all my symptoms resemble a migraine. So the PA put me Topiramate and Ubrelvy for hopes this would cure my migraine and all my other symptoms would go away. The Ubrelvy made my head worse (tried it two different times). The Topiramate, I started having auditory hallucinations, the left bottom portion of my face became numb and I started having ringing in my ears, plus having memory issues (either forgetting words or short term memory issues like forgetting people’s names in the gym who I see every day) The PA even said I can even go back to the gym, so I did. There I noticed I wasn’t as strong. I normally can do a 300lb deadlift and now 75lbs feels heavy, I can’t do front squats, back squats or overhead squats or power cleans because my mind and body aren’t functioning together. A 35lb barbell throws me off balance a bit so I have to use the small 25lb bar. I could normally do over 100lbs in snatches, but I can’t get over 70lbs without being off balanced. I can barely jump so double unders are off the table plus the coordination part. I can’t run or even do v-ups because I can’t get my raise high enough or move fast enough.
11/19/24 I went to another ER, because someone suggested they could probably solve my issue. For two days they tried the original migraine cocktail twice and two different migraine cocktails (using combinations of Toradol, magnesium, sodium, camosine, decadron, sumatriptan). None of these worked to get rid of my headache. Even one doctor didn’t believe the headache was causing all my issues, so they did an MRI on my T and C spine but found nothing. So they just left my case as a complex migraine.
So by then it’s been about 4 weeks and my symptoms are left side weakness in the leg not really noticeable in the arm/hand, headache (which is constant in the temporal lobes mainly left side, most time pressure but when angry it migrates to the front). There’s nothing that triggers the headache just constant and gets angry whenever. I still felt like theres some swelling over my left eye, both eyes sensitive to light, left eye peripheral issues, complex movement skills were off (couldn’t walk on heels or tip toes, couldn’t do heel to toe) balance/coordination was off (felt like I was getting on and off a treadmill), brain and body disconnect, eyes can’t track things bouncing, zig zag or scrolling or I get dizzy and nauseated, left lower portion of face is numb, constant ringing in ears, now a wave of a heat sensation in my left ear (of and on), plus memory issues.
So because the Ubrelvy and Topiramate didn’t work the PA put me on Qulipta. This is now my 10th migraine medicine and nothing is breaking this headache or changing my symptoms.
I started PT which the physical therapist does neurology disorder type stuff (like strokes, concussions, vertigo, MS and so on). My physical therapist did a couple test and noticed I have a vestibular issue but was negative on the PPPD. I started working on eye and head exercises as well as strength and coordination. So far I have a hard time trying to walk backwards at a normal pace and I can’t even raise my knee and tap a cone with my foot at a normal pace. How does someone who was super fit going to the gym 6 days a week and practicing for a mini sprint triatholon go from that to having issues tapping a cone?
11/25/24 I went to see my second neurologist. I explained all my issues and told them I was on my 10th headache medication that’s not working. He basically told me I have multiple things going on but can’t diagnose me because he’s unsure of what is causing my problems and to just followup with my first neurologist office. I brought up the concern about an AVM and he told me AVMs don’t cause any symptoms and that if it did I should be having problems on the right side.
12/3/24 I followed up with the PA and he put me on Amitriptyline and Nurtec, which still no relief of any of my symptoms.
12/6/24 I followed up with another neurologist, this time I still got the I can’t diagnose you and maybe it could be functional neurological disorder (FND) and to follow up with a psychiatrist since I already have a therapist and am doing PT. He was even unsure about the FND because of my symptoms being constant for the last 6 weeks, where I don’t have any good days or bad days. I brought up the concern about an AVM and he told me AVMs don’t cause any symptoms and that if it did I should be having problems on the right side. The only other thing he suggested was upping my 10mg dose of Amitriptyline to 25mg to try to get rid of my headache.
So now I’m very frustrated because I can’t work, still out on sick leave because of this, and I can’t workout like I normally would. I don’t know which way to turn because no one has even tried to run test to rule anything out. Do I try to find a specialist who knows a lot about AVMs, do I try to get a second opinion on FND, or do I sched an appointment with this Neuro-ophthalmologist/neuro-otologist, that my physical therapist recommended that she believes will probably run some test?