persistent migraine aura

[froggiejump]

I am in the process of being diagnosed, through a study, with persistent migraine aura without infarction.

basically I devlop permanent scotomas in my vision with each episode, but do not have the headache.

anyone familiar with this>?

[silkyworm]

Hi,
It is possible to have 'permanent' migraine aura. I suffer with the exact same condition as you describe. Complete with the permanent 'visual snow/ Tv static' in my vision and the afterburns.

I am lucky to have one of the best Neuro's in Europe who by chance has treated 2 other people with this condition. it is a rare form of migraine that you just can't find info about. The books don't cover it. If your neuro hasn't come accross it, you're left in the dark.

It has taken me 12 months to get from a permanent state of brain fog/photosensitivity/blurred vision/spirals/permanent flashing lights in my eyes etc. etc. I also have fibromyalgia to the state I am today which is a 'functioning' person with the odd bad day or moment. It is always lurking there but I am close to saying I may get it fully under control.

I started on 25mg of Amitriptyline per day and it helped a little but I still had attacks. The brain fog stated to get worse and worse and I was searching everywhere for help.

I now take 50mg per day of Amitriptyline (google it for the name used in your country). This is coupled with 0.5mg of Clonazempam for 5 days per month.

I must also point out that the only propper relief I have gotten is from diet changes. I have removed the following from my diet.

1. All Alcohol
2. Chocolate,
3. additives
4. cheese
5. any 'artificail' food
6. Citrus fruits
7. cured meats like ham, salami

It is only the diet changes with the medication that has helped. Without the diet changes, quality of life reduces dramatically and it has taken over a year to get here.

It's simple/pure food like porridge and druit for breakfast, a sandwich for lunch with fresh meat/veg. (no relishes with chemicals) and dinner like fish/steak/chicken with rice/potatoes and veg. There are lots of options.

I hope this helps

[chump123]

yea man i got it, it comes in a wide variety of symptoms and rarely gets any better.  if u never get headaches with it and it never goes away i know exactly what your talking about and i know it ***** but the best thing to do is to learn to live with it and enjoy yourself.

[Carol in PA]

Hello, I have a history of migraine aura followed by severe headache.
For a while, a period of more than a year, I got just the ocular migraine, but no headache.
My scotomas were not permanent.
The pattern then went back to aura, followed by migraine headache, and often accompanied by abdominal distress.
This was associated with the hormone shifts of ovulation and menstruation.

A neurologist prescribed Zoloft in an effort to stop the migraines.
When the dosage was increased high enough, the ocular migraines STOPPED.
I was still getting the headaches, but they were not quite as severe, and responded somewhat to migraine medications.

The Zoloft also stopped the mood swings and the premenstrual syndrome.  I had not realized how bad these were getting until they improved.
It also stopped a couple obsessive compulsive things I had, which I didn't realize were OCD.

Along with the chronic migraines, I was diagnosed with fibromyalgia.
The Zoloft, an SSRI, increased my pain tolerance, so that the aches and pains of fibromyalgia were reduced.  Well, I still had them, but they didn't hurt ~quite~ as much.  

I finally found out that the symptoms of fibromyalgia, fatigue, and migraines were due to infection with Borrelia burgdorferi.
Now when I see someone with that same pattern, I look for other symptoms associated with Lyme Disease.

The part of my story that may be of immediate benefit to you is that a high dose of an SSRI stopped the occurrence of ocular migraine.

Wishing you the best,
Carol