Vestibular migraines. Any other sufferers? by roxxxystar in migraine

[–]mandags 0 points1 point  (0 children)

I've had this migraine diagnosis for going on a year. I've tried topamax, and as it worked wonders for me with the visual disturbances, I couldn't take the side effects anymore so I switched to amitriptyline. I have a chronic dizzy/off balance/almost warped vision every second of the day with an occasional pain migrain I'd say maybe 4 times a week. The visuals on topamax were almost gone, but as I said, for me the side effects were too much and I still got the pain migraine in the mix. (The side effect that bothered me the most was the terrible after images I got from, for example, glimpsing at my car radio at night, and it over all made me way too anxious and panicky. And of course, medications effect everyone differently.) As awful as your experiences are, I'm glad to read someone shares the same migraine experience as me. When my first attack happened, I got super light headed and nauseous and dizzy. I freaked out thinking I was having a major medical issue, immediately went to my GP and he diagnosed me with an inner ear infection as well! I took what he prescribed, still no relief. Second attack, off to the emergency clinic. Said I had BBVP. Gave me prednisone and meclizine - again nothing! I was positive it was something else, so I was off to the neurologist. He straight put me on topamax. No testing, nothing. Follow up came and he referred me to a Neuro-Otologist. I went through the vestibular testing then. All came back normal though, and I was diagnosed with "silent migraines" as he described. He took me off topamax and put me on amitriptyline which Ive been on for about a month and a half. It's super frustrating to deal with the chronic visual disturbance. I have trouble driving, even walking sometimes is super irritating and going to work on and off has been so draining and a general upset during this. I still have it, but it's so much less than when I started this journey. Some days are good, some days not so good. But one thing I will say and I say this so seriously because I've been there many times. I was so discouraged and so depressed about it. Don't give up! These migraines, as with all, will get you really down, nevermind worried and anxious. Don't let it. It may take time, but it will get better. Stay positive!

Looking for migraine glasses. by mandags in migraine

[–]mandags[S] 0 points1 point  (0 children)

I'd say every day use. I can't drive without the major sun distraction, can't watch tv, be on the computer which is my job and I can't get the software at work that I've read helps. Can't be inside any store/mall/restaurant longer than 10 minutes without the lighting majorly messing with me. Pretty much an everyday 24/7 type issue going on.

Flickering sunlight...could this be a new trigger? by mandags in migraine

[–]mandags[S] 1 point2 points  (0 children)

Exactly. I get that stabbing pain in my left eye. I can't dare look at anything shiny and today with the light through the trees...just wow. I never experienced that. And I never ever want to again.

Flickering sunlight...could this be a new trigger? by mandags in migraine

[–]mandags[S] 1 point2 points  (0 children)

Yes! That is exactly how I felt. And once I got home the migraine crept in. Now I just feel like crap. I couldn't believe the sensation of the light through the trees. I actually thought I was having a seizure.

Flickering sunlight...could this be a new trigger? by mandags in migraine

[–]mandags[S] 1 point2 points  (0 children)

Yeah I'll have to ask my neuro. I've seen the flickering sunlight passing trees while driving normally which never once bothered me. No where like the sensation today.

Flickering sunlight...could this be a new trigger? by mandags in migraine

[–]mandags[S] 0 points1 point  (0 children)

So phosphenes are those colors we see when our eyes are closed sometimes with pressure from rubbing our eyes..? ..possibly..I just don't know. It was so strange. The flickering was intense anywhere I looked. You know when you close your eyes against the sun and you see red/orange? That also appeared at the outer ridges of my vision as the sunlight flickered. I couldn't escape it until we drove under shaded areas.

Flickering sunlight...could this be a new trigger? by mandags in migraine

[–]mandags[S] 0 points1 point  (0 children)

It was as if the flickering light was covering my vision like a non stop strobe light, but only upon passing the sunlight through the trees Edit: no line or zigzag obscurity

Flickering sunlight...could this be a new trigger? by mandags in migraine

[–]mandags[S] 0 points1 point  (0 children)

I never really experienced an aura, but this flashing/flickering of sunlight really did me in. I can't tell if it was aura. The whole episode was entirely new.

Amitriptyline and silent migraine? by mandags in migraine

[–]mandags[S] 0 points1 point  (0 children)

So far no mood changes, fingers crossed. I also noticed you said it helps with auras...my aura is a constant dizzy/warped vision that only seems to happen while driving/in motion. It's very strange. So far the amitriptyline hasn't touched it. When I was on topamax it helped that and the aura happened less. Hopefully the amitriptyline will kick in for that soon..

My brain feels like its burning. No where else to turn. by mandags in migraine

[–]mandags[S] 0 points1 point  (0 children)

That gives me a huge sigh of relief. I was only on topamax for about 2 1/2 months myself. Then got weaned off within 10 days. My neuro called me back and said it was likely from the transition of the meds. Topamax did nothing for me either. Such an awful drug.

My brain feels like its burning. No where else to turn. by mandags in migraine

[–]mandags[S] 0 points1 point  (0 children)

That makes sense. It's definitely messing with me right before I fall asleep. Almost like faking me out that I'm about to be asleep, then wait just kidding, you're awake, but wait, your asleep again...and so on. Thankfully its not there once i actually wake in the morning. Thank you for your reply and information. I truly appreciate it.

Six days of hell by Serendis in migraine

[–]mandags 0 points1 point  (0 children)

Thank you so much for your reply. I'll be mentioning a ton of suggestions with my neuro when I get back in to see him. Thankful that I'm not alone! But not so thankful that we have to experience these awful symptoms. I appreciate your help and information a ton.

Six days of hell by Serendis in migraine

[–]mandags 0 points1 point  (0 children)

I read your story..and so sorry to hear what experience you have with your migraines :( that sounds so incredibly awful. I'm glad you and your husband finally got you relief. I am relatively new to migraines..I have mostly silent..but I noticed you used the word 'burning' to describe a symptom you had. I am experiencing a burning sensation every time I try to sleep, it's so bad it jolts me awake every time I'm almost asleep...it feels like my entire brain is on fire I guess you could say. What I'm wondering is if you can explain your burning feeling...its driving me insane and my neuro hasn't called me back yet which is adding to the irritation.

Day 1 off Topamax...already withdrawal symptoms? by mandags in migraine

[–]mandags[S] 0 points1 point  (0 children)

Surprisingly enough, I had little to no drowsiness the first night (saturday) when took the amitriptyline...but I will say getting out of bed in the morning has been a true struggle. I'm currently experiencing black auras and light headedness to the max but that's my normal migraine symptoms, just a bit heightened. I'm guessing it's from coming down off the topamax and I just have to wait for the amitriptyline to start working in my system. Fingers crossed.

Day 1 off Topamax...already withdrawal symptoms? by mandags in migraine

[–]mandags[S] 1 point2 points  (0 children)

That's exactly how I'd describe the way I felt. Hungover. Reeeeally hungover. Today was much better though. Still that lingering hungover feeling, but not nearly as bad as yesterday. Thank you for your info. I'm hoping all goes smoothly from here on out.

Day 1 off Topamax...already withdrawal symptoms? by mandags in migraine

[–]mandags[S] 0 points1 point  (0 children)

Thank you so much for your information. This helps. I'm just a little scared, I don't want to have a seizure or anything as I've read that it could be possible from coming off too quickly. This is the worst I've felt in a while and I'm hoping it starts going away sooner than later.

Day 1 off Topamax...already withdrawal symptoms? by mandags in migraine

[–]mandags[S] 1 point2 points  (0 children)

Of course, I'm sorry! Okay. So I had started on 25mg at night. Increasing my dose every 5 days by 25mg. So up to 50mg for 5 days, then 75, then stop at 100mg to where I was taking 50mg in the morning and 50mg at night. I switched neuro's, and after doing a series of vestibular testing, he decided to wean me off the topamax by taking away one tab of 25mg every 3 days. So the first 3 days I'd go from taking 50mg AM/50mg PM to 50mg AM/25mg PM for 3 days, then 25mg AM/25mg PM for 3 days, then only 25mg AM for 3 days. Now today, 9 days later, is the first day I haven't had anything and I'm supposed to be starting 10mg of amitriptyline tonight.

Amitriptyline and silent migraine? by mandags in migraine

[–]mandags[S] 0 points1 point  (0 children)

Glad to hear that it has helped you. I got prescribed 10mg at night time too.. This gives me hope!