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I was recently diagnosed with something called vestibular migraine. Or hemiplegic migraine. Or maybe both. There is a difference because vestibular is awful, but hemiplegic can be dangerous. Apparently there is no way to tell for sure, but I am not going to accept that answer. Story unfinished. But let me back up.
For twenty-four years, I have been plagued by something that was called “complicated migraines” by the neurologists I had seen. After Loma Linda mistakenly diagnosed me with TIAs (mini-strokes), UCLA and, later, Barrows in Phoenix, diagnosed these episodes as complicated migraines.
They are a migraine disorder, but they are not migraine headaches. I used to get the headache version until they turned into this other sort of migraine. In fact, I had some horrific migraines when I was a kid–seven to ten years old. The version I’ve been getting for 24 years is generally without headache. The symptoms include sudden severe vertigo, heaviness, inability to stand or sit, weakness, burning through the sinuses, widely fluctuating body temperature, brain fog, squinched up face on one side only, numbness of limbs, nausea, vomiting, falling asleep at the tail end of the acute episode, etc. It’s very difficult to go anywhere by myself, and this is why I don’t travel alone any longer. I can’t attend concerts or sporting events with lots of lights. I had to leave daughter’s wedding reception early once the goofy lights came out. Although we had planned ahead, what the DJ thought was mild was not. That’s ok because her friends all had a wonderful time, and I was tired anyway.
When I moved to Arizona, the complicated migraines got worse in that I felt sick every day and had acute episodes every couple of days. I had to go on preventative medication in the form of a blood pressure med. The meds kept the acute episodes from happening so frequently.
I would say my migraines have been under control for a dozen years until this spring when I started feeling sick (sore eyes, nauseous, slight vertigo) all the time. So I went back to Barrows, to their headache clinic. That’s where I was diagnosed with vestibular and/or hemiplegic migraines. No such thing any longer as complicated migraines.
My worst trigger is light, especially flickering artifical light. Fluorescents always have a flicker, even if you can’t see it. But LED can be bad, too. And fluorescents that have a noticeable flicker are the devil. When I have to go under artificial lights, such as the doctor’s office or grocery store, I wear a brimmed hat and sunglasses. Other triggers are sleep disturbance, stress, too much paperwork where I have to look down instead of across (computer better than paper on the desk or table).
Another thing that happened in the last few years is that I occasionally get migraines with very traditional aura in the form of sickle-shaped kaleidoscope images. And, yes, it is as vivid as in the image below.
I am going to try to continue to search for answers. My symptoms are consistent with having both conditions at the same time, but I haven’t been able to find anyone yet with my regular set of symptoms. There are rare individuals who have both vestibular and hemiplegic, but the forms occur at different times. Some of my regular symptoms apply to vestibular, and some apply to hemiplegic (especially the one-sided face squinch). So onward. And in the meantime, please hand me the hat and sunglasses!
That sounds horrible! I’m so sorry you’re experiencing those migraines. Take care.
Oh, this sounds pretty dreadful. I’m so sorry that you’re dealing with this!
Luanne, I have never heard of such a condition and/or conditions, but I am horrified, too. I hope that you get clarity and help for your symptoms. No wonder you’ve struggled to feel well in the past year particularly. And yet, such wonderful achievements in your work at the same time. Please do take care, as I know you will do. And yes, onward, my friend.
How dreadful! I hope you’re able to find some actionable answers soon.
Louanne,
I hope you can get some long-term relief. For several years, I, too, have experienced that aura/broken glass image. It usually lasts about 10 minutes before it goes away. Not really any pain, but very disconcerting all the same. 😊
Thank you so much, Mark. So many people have been saying they get that image or have gotten it at least once or twice. And, yes, no pain. I actually only created the image to have an image for the post because it’s not part of my “regular” migraine situation. I almost was happy the few times I got it because it wasn’t unpleasant unless I wanted to see hahaha. Thanks for letting me know!
Oh, my dear, dear friend. What fresh hell are you going through?! If anyone can find answers, it’s you, but you must take care of yourself. I know you will. Just felt I had to say it so I don’t feel completely helpless. xoxoxox
Yup, not so fresh though haha. Thank you so much for letting me know, Marie. Big hugs back atcha.
What a curse. I don’t like it – I’ve only clicked that to say that I have read the post
I know what you mean about that like button! Yeah, it is a curse. Lots of us have curses, I guess. This is my icky one.
You are not alone, I have friends with the same disorder. Thank goodness you have a diagnosis, the first step to recovery.
Yes, I plan to firm up that diagnosis. I need to know if these are truly hemiplegic or not because they need more care than other migraines. So we’ll see. I am on the path! If you have a friend whose symptoms have vestibular and hemiplegic symptoms both together, please ask her or him to contact me! xo
Good to know, Luanne, and thank you so much.
These sound like awful conditions to deal with. I know you seek out the best answers and treatments. It must be a real drag to have to curtail your activities that way. Hoping you find relief!
I’m somewhat familiar with a part of your condition, Luanne. I’ve had migraines for most of my adult life, but more recently I’ve had those kaleidoscope auras without migraine. While working on my second book, I had them all too often. Lo and behold, I received the advice to turn down the brightness of my laptop and that did wonders. I only get them every now and then since I did that, usually when I accidentally look at bright light. Now if I could only cure the tinnitus! Take care of yourself!
I hope you have more answers – and relief – soon!
Luanne, we are helping each other, the best way we know how to blog through ugly gremlins. I see your persistent in other ways too. No one has an easy life; writers write through the pain, oddly sometimes the pain their Muse.
I hope you get some answers–and relief. I struggle with lower back pain and macular degeneration. Recent eye surgery has helped with that, but retaining. my vision will always be a challenge. I hope this message posts okay. I’m copying it into my notes–just in case. Ha!
Migraines are awful. I’m sorry to read about this. I hope that you find some relief sooner rather than later.
Oh what a drag!! I suppose you’ve already Googled the heck out of this… Have you tried the Mayo Clinic site, and also the National Institute for Neurological Disorders & Stroke – https://www.ninds.nih.gov/ ? Hope you can find help soon!!
I’m sorry you are having these awful migraines. Much of the worry is not knowing quite what they are. I hope that can be figured out soon and a good care plan put in place. Hang in there, and wear those wrap-around sunglasses. I love them!
Hi, Luanne. I am so sorry to hear about the migraines. Let me check with Rich (my husband) who may have some thoughts on this. His migraines are tied to food (chocolate, artichokes). I’m sure you explored that path, but let me see what he thinks. I admire your persistence to get to the bottom of this and get some answers. Take care.
I share the same disorder, namely vestibular migraine. I have had it now for five years. what worked well for me was botox injections for the migraine, and mild anti-anxiety medications for the vertigo
Neither one of those has been recommended to me. Do you take the meds all the time? They’ve given me meds to take the moment it comes on for the vertigo. I haven’t tried them yet. I had to get insurance approval and it took a long time.
No I don’t take them all the time. Botox is done once a year but I couldn’t get insurance coverage for it. In the five years I had migraines I only needed it twice. The anti anxiety med I take only when vertigo hits but it has become less common for it to happen, once a week now and mild as compared to three to four times a day
Oh, I’m so glad it’s becoming less common! My migraines are vestibular mixed with something else, so they are having a hard time figuring it out. They think I might have the genes for more than one kind of migraine and they both or all were activated sort of together. Sounds weird I know. Good luck with yours! It’s a misery, isn’t it?!