Persistent Migraine Aura without infraction
About 5 years ago I had a huge migraine and it left my vision screwed up after. I was diagnosed by one doctor with Persistent Migraine without infraction, no real help offered other than beta blockers which I refused. I also spend many trips to the hospital for checks on my eyes which were fine, then referred to a neurologist who didn't have a clue, just said hopefully I'll get better in time. For the next 3 years I had to use a dyslexia overlay sheet on my pc screen as couldn't read black text on white backgrounds and had bad sensitivity to light.
Anyway cut a long story short I was ok for 2 years and recently started having migraines again, unfortunately one has now left me with all the same symptoms. I'm now self employed and have a 7 month old boy... life is really hard at the moment. I have to work but at the same time it's completely knocking me for 6 and my condition is debilitating. Having read up on things I'm convinced the original doctor's diagnosis of Persistent Migraine Aura without infraction is right and have been to see another doctor about it recently with a list of medications I've read in case studies that may help... she couldn't give me them, offered me beta blockers instead (which I refused) and said she'd refer me to a neurologist.
I feel like I'm just going round in circles again... whilst I wait to be referred I'm trying to run my business, drive all over the place and be a husband and father but I'm just spaced out, can't concentrate, tired, struggling to us a PC for any length of time and I'm no fun to be around.
Does anyone have any experience with this type of migraine and any advice on what I can take to 'come around' a bit and to fix my persistent eye issues? Or even some advice on how to approach the doctors so I actually get some relief?
Sorry for the rant... sort of at the end of my tether here 🙁
Hi ajax_andy,
I'm sorry you are having such a difficult time right now. Migraine can be debilitating and exhausting and make life rather hard. Let's see what information I can provide you that may help.
It may be time to see a doctor who is an expert in treating migraine and headache disorders- a migraine/headache disorder specialist. These doctors are different from neurologists in that they are board certified in headache medicine which is different than being certified in neurology. The thing is neurologists may be fine doctors and say they are 'headache specialists' but that may not be the case. Neurologists have a hard time being experts in one area because they treat so many different conditions such as multiple sclerosis, stroke, epilepsy, Parkinson's and others. Migraine and headache disorder experts are just that, experts in one area - ours - migraine and headache and know which medications are best to treat which type of migraine and/or headache disorder. Let me share information with you on how these doctors are special and how to find one; https://migraine.com/blog/how-are-migraine-specialists-different.
This study discusses persistent aura without infarction and it's treatments which include cyproheptadine, DHE 45, Lasix, Lamictal nimodipine; http://www.jmedicalcasereports.com/content/8/1/61
To help prepare for an upcoming doctors appointment, you may find this information helpful in our
Getting Help section; https://migraine.com/getting-help.Good luck and let us know you how make out,
NancyHey Andy Tim here I know exactly how you feel, I just got diagnosed a few months ago I've been through hell the last two years my two 2 dogs died and my nephew died only 18 a week after my dog died. I've got a torn laburnum in my left shoulder and a damaged nerve in my neck. So far Nero has tried botox I just did nerve blocks Thurs Tues I go for iv infusions. You should look into it
Thanks Nancy, sorry for the delay in responding but i've been away. I'll have a look at the info and maybe print it off for when I have my appointment. I'll also ask to be referred to someone who is an expert in headache disorders 😀
Thank you for these posts! My 12-year old daughter has had a spinning "blob" in her vision for 4 months, now. She had suffered 6 migraines in the span of a year and a half. This blob came after her being on Amitriptyline for 5 months. She has had an MRI, fMRI, many, many blood tests. Neuro optho, neuro and next an MD, PHD headache specialist on Feb. 10. This condition just breaks my heart. The information you provided makes me feel she is not alone. Many, many thanks!
Dogmom4, Ugh, SO sorry to hear about your daughter. My son Is 11 and in week 8 of a terrible migraine. He has battled migraines for three years with several bouts of status migrainosus. A few weeks ago he developed spots in one eye's vision and a jagged slash in their other eye's vision. It has gotten worse to the point that most of his field of vision is too foggy/fuzzy/missing in the one eye and the slash is bigger in the other. It has been weeks. Preventative meds (depakote) obviously failed, as have all rescue/abortive meds. Just got Botox shots tonight and we all feel such relief at the hope that it might help him. Man, he has really suffered, and yet he keeps looking on the bright side of every day, and is so Brave about the treatments and pain. He's inspiring to me - thank goodness because the worry and care I feel for him is exhausting.
I hope you have a good experience with your headache doc. Best wishes to you and your daughter!
dogmom4, It breaks my heart to hear about your 12 year old suffering like that. It's one thing for us adults to have to endure migraine misery, but kids....that is a different story altogether to me. Well at least she has a wonderful, caring Mom that is doing everything within her power to help. Bless you. I will be praying that one of these Doctors will be able to help. Please let us know how she is doing.
