Today I Finally Received a Diagnosis

By gardenertoo

1 min read

After two years of experiencing every symptom, I have ever heard of connected to migraine disease and four different doctors I have what appears to be a true diagnosis. Intractable persistent migraine aura without cerebral infarction and with status migrainosus - primary. Migraine variant, intractable.
I am completely overwhelmed and wonder what the rest of my life will hold. I have two new medications and must wait and hope they help.

Does anyone have this diagnosis and how has it affected you?
Janet

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Lawrence Community Admin
Hi <inline-mention user-id="3764455" username="gardenertoo"/> , Many people within the community share similar experiences with being diagnosed with status migrainous and intractable migraine. When you get a chance, take a look at these articles that highlights more information and tips that you should consider after being newly diagnosed; <a href='https://migraine.com/living-migraine/treating-intractable-migraine' target='_blank'>https://migraine.com/living-migraine/treating-intractable-migraine/</a> and <a href='https://migraine.com/blog/what-is-status-migrainosus' target='_blank'>https://migraine.com/blog/what-is-status-migrainosus/</a>. Wishing you gentle night! -Lawrence (Migraine.com Team)
4242 Member
Yes Janet. I've been diagnosed with same and lived with it for 15 years and feel I missed about 75% of my life. It is always "there", ALWAYS this confusion, disorientation, stumbling around, "exploding brains", vertigo, blurred vision, one sided paralysis, slurred speech. It's in varying degrees. I can be 95% not present in the moment, or 20% functioning decently. But it is always there. I take varying meds to mitigate the symptoms and grateful to have a regimen that mostly keeps me functioning nowadays. But I'm never quite fully right in the head. I rarely get classic migraine symptoms- just the intense and unusual and persistent aura. I'm retired now but retired young as I was so confused and disoriented, I couldn't speak or comprehend. Most days I'm pretty good with the multitude of meds I take, but I go through flares of awful times periodically. I spent several years trying to get a neurologist to understand what I was experiencing. Finally found them at UCSF med center. Life is a lot better than what it was 5-10 years ago. I hope since you've written this that things have improved somewhat for you. I'll be eager to hear more about you and what you've experienced.
wirr Member
I'll leave this here: https://migraine.com/forums/persistent-aura-without-infarction#reply-114880
gardenertoo Member
Hello, how good to hear from a person who can understand the symptoms and difficulties connected to the type of migraine from which you and I suffer. Your illness started years before mine and I believe there is now greater understanding and newer drugs to help with many of the symptoms. I am taking Nurtec also named (rimegepant). This is the only drug from which I have obtained relief. It was first prescribed as rescue drug but proved to be insufficient so now I take it every other day and apart from minor setbacks it helps tremendously with no side effects. The major drawback is the expense, I hope you can find a source for this medication and that it brings you relief. Wishing you peace, Janet