June 24, 2015 at 7:13 am #64694
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 🙁
July 5, 2015 at 3:51 pm #65078
Nancy Harris BonkModerator
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/ and https://migraine.com/blog/looking-for-a-migraine-specialist/.
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,
May 7, 2017 at 11:11 pm #89270
Hey 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
July 15, 2015 at 7:35 am #65483
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 🙂
January 5, 2017 at 3:12 pm #83570
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!
January 16, 2017 at 11:20 pm #84002
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!
January 6, 2017 at 6:10 pm #83612
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.
March 22, 2017 at 2:47 pm #87086
I’m suffering from the same thing you are, except no doctor has diagnosed me and my parents can’t afford a specialist. I don’t know how to solve your problem but I know some things that can help.
For the concentration in general: Caffeine. Yes, it seems like it would do the opposite, but it really gives your mind the kick it needs to stay in gear.
For your eyes in general: Artificial tears or any other sort of eye lubricant. They will slightly lessen the aura and help with other related eye problems.
For the PC reading issue you mentioned: Use a dyslexia overlay. A physical one will help with reading in general, but you can get an app for your computer and Android.
Hope this helps. Regards,
September 30, 2017 at 7:17 pm #98243
I’m experiencing the same thing and have been treated with magnesium therapy, with no impact so far. However, another doc thinks it is not a migraine, but instead chronic dry eye. Have you asked your ophthalmologist about this? I’m using Refresh Celluvisc lubricant eye drops 4-6x daily plus taking Omega 3. I will report on the results. It’s been a couple of years since your original post. How are you doing?
March 13, 2018 at 8:47 pm #100938
From the sounds of these testimonies my wife is experiencing these same issues. She started out with a bad migraine in early January with a headache but the visual components never went away. She sees heavy amounts of glare, a lot of floaters distorted images, horrible depth perception especially in her peripheral field of vision. She has been to two opthomologists and have an MRI at the Er and they have found no physical reason for them. She has an appointment to see a headache neuro specialist in April but it just seems hopeless to her after scouring the internet for treatments. None of the doctors she has seen has offered her any advise other than “take some Aleave or Excedrin if you feel it coming on”
Does anyone have an idea of what the success rate is of minimizing this disorder or at least treating some of the uncomfortable side effects like nausea. My poor wife is loosing hope fast and I want to support her any way I can. Thanks for you help.
April 8, 2018 at 11:47 pm #101243
Pipedream, I have been getting ocular migraines for the last 6 years. I typically get 1-4 migraines over the course of three weeks. This will happen once or twice a year. Well last week I had 5 ocular migraines in 7 days. Literally the worst week of my entire life. I went to the neurologist and he put me on Trokendi XR 25. I took it on the 6th day and did not get a migraine. I am on day 10 right now and haven’t had a migraine. So….there is hope. I guess I’ll have to be on medication for the rest of my life but I really don’t care.
As far as the vision part goes, mine got messed up too last week. I see slashes and blurs. Remember the opening to Saved by the Bell? Looks a lot like that. Lol! Hopefully soomeoone can help me fix it one day.