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Migraine without pain but perpetual aura

I have experienced Migraines with and without headache pain since I was a child. Stomach migraines, headache migraines mostly when young. Now turning 60, I am experiencing what I call the “perpetual aura migraine”. For 3 years now, I have experienced every aura going all at the same time but thankfully few with headaches.


However, it’s very disconcerting to be viewing the world through translucent moving bubbles while trying to pick poker straight thin red lines off your food in a restaurant only to realize the red lines and bubbles are yet another visual aura.
I now look at it as my own personal artwork of the mind because, well, the alternative is to go crazy.
I am bruised all the time from losing my balance from missteps and have taken some doozy falls too. I’ve had my eyes, ears, and every body part checks, xrays, MRI’s, scans, you name it, it’s been done. No tumors no issues. For a long time I was labeled as depressed. I laughed. Who wouldn’t be but I knew it wasn’t that. Finally the Docs admitted what I knew all along, migraine with aura. Somewhat of a relief they believed me but still living with it.
Finally broke down and am trying Topiramate. Jury is out on that as it’s early days. Also have Sumatriptan on hand to stop migraines when they start but that’s a bit of a laugh as they haven’t stopped for 3 years and they only gave me 6 of those. Had a chuckle over that.
Sure would like the red lines and bubbles to stop making an appearance though and the falling over and nausea can go away and I wouldn’t miss them.
Any suggestions for other meds or holistic things are welcomed. Thanks for listening.

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Comments

  • chica22
    5 years ago

    I had migraine with perpetual aura for 1 1/2 years before seeing Dr Eric Eross at the Mayo Clinic. He prescribed topomax, propanonal and Migrainal if I were to have a migraine. After tittering up on the Topomax dose for a month my migraines stopped. I took Topomax for 5 years as I was afraid to stop and have them come back….as it turned out I stopped slowly and they did not return. For the last 10 years I only get one or two per year…knock on wood. And those are because I inadvertently get MSG at a restaurant or get dehydrated or something unusual. The topomax has side effects that are difficult to handle, but the migranies were worse so I endured it. I hope this helps you. My visual disturbances were extensive….the pain minimal and mostly in my neck and back of the head.

  • Taters
    5 years ago

    I tried Riboflavin, feverfew,and Migrelief before I caved in a tried medication. Topiramate made me feel like I was drunk/ loosing my mind. It was awful. Sumatriptan made me feel sick to my stomach. I tried Pamalor as a preventative and it made me feel ill also. I finally was able to get my insurance to approve botox injections and it has changed my life. I still get aura pretty often, but it is not interfering with my life as much. I also get fewer bad headaches and when they do come, they are less severe. I also take Effexor as a preventative and that has helped in combination with the botox. I totally feel your pain and I hope you find something that works for you!

  • Meggietye
    5 years ago

    This is all so painfully familiar. I found a terrific little paperback this summer called The Migraine Brain, it is full of information about lifestyle/ food choices/meds etc that has helped me more in a few weeks than 20 yrs of doctors appointments and Internet searches. Everyone is different and we are even different within our own selves often week to week…but there is lots of good stuff in this book, it is written by a neurologist who runs a headache clinic. I have bought 6 copies and given them to patients and family members of sufferers to clue them in as to some of what is going on. You can
    also order it thru the library.

    Nancy

  • aliciab
    5 years ago

    Thats the best book Ive ever come across on migraines

  • Woobsie
    5 years ago

    Wow!! I actually thought for a moment that I wrote half of this story myself. That was bizarre! I had my story featured on here as well. I am only 33 but have had migraine with persistent aura and no headache since 2006and have lost many jobs and friends do to it. Through lifestyle changes and diet changes I have had relief but I still cannot fly south in the winter. Glad to hear there are many more of us out there…we don’t suffer alone. Thanks for your story!

  • Beth
    5 years ago

    I am so glad to read this. Every evening, around 6-7, I get an aura. Wonderful flashed lights…dots and zig zags. This past week, only 1 headache. I also have a constant ringing in my ear and vertigo. Yes…I do get dizzy…but, thank goodness, I haven’t fallen lately.

  • Lisa Robin Benson moderator
    5 years ago

    Hi Peggy,

    I can’t diagnose you as I’m not a medical professional, but I can tell you that I have been talking with a fellow migraineur who also has constant aura. She has had this issue for a few years now. Her doctor told her it is something called “persistent migraine aura.” She has found relief once she saw a headache specialist. The headache specialist told her about a supplement that might help, and also she validated her symptoms. The supplement is called Migra-Eeze. She also benefits from acupuncture and Chinese medicine. In addition she has recognized some triggers to avoid, and lifestyle changes that have helped her. Her symptoms are now much more mild and she can live her life normally for the most part. Everyone is different and what works for one person won’t necessarily work for the next one, but I hope that sharing her story will give you some hope.

    Also, a note on the sumatriptan: most insurance companies only allow nine a month, but under supervision of your doctor sometimes you can get more per month authorized by your insurance. Some of us just need a few more a month to make a difference, and as long as were not overusing it can be a big help.

    I would say the most important thing is to see a headache or migraine specialist. They will know best about your unique symptoms. Here is a link that will help you look up a specialist if you don’t have one already.
    http://migraine.com/blog/looking-for-a-migraine-specialist/

    I would also recommend trying to figure out what makes your symptoms worse and what may help them. We often have to be our own detectives. Wishing you the best of luck, and please feel free to reach out at any point with a question.

    Lisa

  • Peggy author
    5 years ago

    Thanks Lisa. I will look for the Migra-ezze. Specialists are too far away for me to go to and money is an issue for the chinese medicine and acupuncture. I barely work but don’t qualify for disability. Rock and a hard place. By the way the Topiramate was a disaster. I really felt like I was losing my mind on it. So back to square one. As far as triggers, life does it. Nothing a large lottery win wouldn’t fix.

  • Luna
    5 years ago
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