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greyeyedbeauty
New Member


Date Joined Sep 2014
Total Posts : 3
   Posted 9/2/2014 11:51 AM (GMT -7)   
I am also suffering daily migraines. I have persistent visual aura. I see shadows in my eyes daily. I see flashes of light randomly all day. I also get full blown migraines with aura.. and numbness. As well as brain confusion. I've had atopic migraines too. 8 years now. I'm so tired n scared. I've had so many tests, seen so many drs and they all say my eyes are fine they see nothing. Meanwhile I struggle to see, live and stay calm. Nothing I've tried has helped at all. The daily stuff or the full blown migraine aura idk what is worse. All so scary. Nobody understands me. They say oh I get migraines too or oh I've had auras too. Does anyone understand the daily hell and struggle I face. I live in fear daily. I don't know how I cope but I do. I just wanna sleep always. I want support, people who actually understand it. Its not just a headache. Sigh. I look normal so people blow my condition off. I'm scared. I wish I had a support group to attend for it. I'm a wife and mother. Its so hard. I pray everyday for a cure. I've tried everything I can think of to help myself. I'm so depressed and I'm fighting this battle alone. A battle nobody I know takes seriously. They just don't get how awful this is. I'm so sad.

JungRulz
Regular Member


Date Joined Jan 2014
Total Posts : 394
   Posted 9/2/2014 7:12 PM (GMT -7)   
I had ocular migraines a few times a week for nearly 15 years. Ocular (visual) migraines usually occur in the occipital lobe of the brain, near the back of your head. Migraines are believed to be caused by vasoconstriction which produce aura, including visual, auditory, numbness, cognitive, etc., followed by dilation, which is believed to cause the pain. My ocular migraines were evidently caused by vasoconstriction. After years of having frequent ocular migraines, one doctor prescribed Ergotrate. The pharmacy wouldn't even fill the prescription until they spoke with the doctor, it's usually used for other things. After being on this medication, it was the first relief I had in over 12 years, with a drastic reduction in the numbers, perhaps one every 10 days.

Over the years, one doctor tried Cafergot, but it contains caffeine as well. Caffeine causes vasoconstriction, so when I took the medication I had the worst visual aura I had ever had. Ergotrate doesn't have the caffeine. I was also on Inderal (Beta Blocker) at the time. I asked the doctor to increase the dose of Inderal and discontinue the Ergotrate, which he did and it worked, keeping the migraines down from a few times a week originally to a few times a month.

I later discovered I had seizures, though the aura never occurred with the seizures, so I suspect they were actually migraines, not part of the seizures. My neurologist said that seizures and migraines can be closely related. I started on Dilantin (Phenytoin) and my migraines went away completely. They can use anti-Seizure medications to treat migraines.

Oliver Sax, a noted neurologist, wrote a book on migraines for lay people, like us.

www.goodreads.com/book/show/66720.Migraine

"This link contains multiple resources for obtaining the book, including libraries."


Also, YouTube, simulating a visual migraine and a story of migraine induced cognitive issue.

m.youtube.com/watch?v=fo139jYAFzA

m.youtube.com/watch?v=BVGlvGHHU3o

This is the reporter they are discussing in the previous link.

Be sure to avoid triggers, get enough sleep, avoid diet and some cold medications, energy drinks, etc.


I'm more than happy to discuss these things with you, I've been through a lot with them.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7280
   Posted 9/3/2014 8:33 AM (GMT -7)   
Welcome to the forum.

Have you been to a neurologist at a major hospital?

After 6 neuros I went to John Hopkins and finally received a complete diagnosis, see below, TN, hemi-cranial, face pain; I now see a doc at Thomas Jefferson in Phila, Pa and am on a cocktail of 4 maint. meds for pain control of daily pain. I use imitrex for break through pain and tylenol 3 for TN pain with cluster headache at the same time.

Hope this helps
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

greyeyedbeauty
New Member


Date Joined Sep 2014
Total Posts : 3
   Posted 9/3/2014 2:57 PM (GMT -7)   
JungRulz said...
I had ocular migraines a few times a week for nearly 15 years. Ocular (visual) migraines usually occur in the occipital lobe of the brain, near the back of your head. Migraines are believed to be caused by vasoconstriction which produce aura, including visual, auditory, numbness, cognitive, etc., followed by dilation, which is believed to cause the pain. My ocular migraines were evidently caused by vasoconstriction. After years of having frequent ocular migraines, one doctor prescribed Ergotrate. The pharmacy wouldn't even fill the prescription until they spoke with the doctor, it's usually used for other things. After being on this medication, it was the first relief I had in over 12 years, with a drastic reduction in the numbers, perhaps one every 10 days.

Over the years, one doctor tried Cafergot, but it contains caffeine as well. Caffeine causes vasoconstriction, so when I took the medication I had the worst visual aura I had ever had. Ergotrate doesn't have the caffeine. I was also on Inderal (Beta Blocker) at the time. I asked the doctor to increase the dose of Inderal and discontinue the Ergotrate, which he did and it worked, keeping the migraines down from a few times a week originally to a few times a month.

I later discovered I had seizures, though the aura never occurred with the seizures, so I suspect they were actually migraines, not part of the seizures. My neurologist said that seizures and migraines can be closely related. I started on Dilantin (Phenytoin) and my migraines went away completely. They can use anti-Seizure medications to treat migraines.

Oliver Sax, a noted neurologist, wrote a book on migraines for lay people, like us.

www.goodreads.com/book/show/66720.Migraine

"This link contains multiple resources for obtaining the book, including libraries."


Also, YouTube, simulating a visual migraine and a story of migraine induced cognitive issue.

m.youtube.com/watch?v=fo139jYAFzA

m.youtube.com/watch?v=BVGlvGHHU3o

This is the reporter they are discussing in the previous link.

Be sure to avoid triggers, get enough sleep, avoid diet and some cold medications, energy drinks, etc.


I'm more than happy to discuss these things with you, I've been through a lot with them.



Thank you so much. This was very helpful. I watched all of the video links.

greyeyedbeauty
New Member


Date Joined Sep 2014
Total Posts : 3
   Posted 9/3/2014 3:06 PM (GMT -7)   
BnotAfraid said...
Welcome to the forum.

Have you been to a neurologist at a major hospital?

After 6 neuros I went to John Hopkins and finally received a complete diagnosis, see below, TN, hemi-cranial, face pain; I now see a doc at Thomas Jefferson in Phila, Pa and am on a cocktail of 4 maint. meds for pain control of daily pain. I use imitrex for break through pain and tylenol 3 for TN pain with cluster headache at the same time.

Hope this helps
Trina[/quote

Hi. Thank you for the welcome. I have been seen by neurologist, Neuro ophthalmologist, retinal specialist, and family Dr. I was seen at the Cleveland clinic. They all have concluded I have persistent visual aura as well as occular migraines, sensory migraines that include numbness and tingling, atopic migraines and migraine with aura. It's a lot. I never know what kind of migraine I will get. I get them several times a month. I have persistent daily stuff going on. Its very hard to accept and cope. No preventative meds have helped. They have tried me on beta blockers and anti depressants. I can't seem to find any triggers. Sometimes caffeine but other times no clue what brought it on. Lights in stores are very bothersome though and trigger flashes. I take imatrax at the start of the aura and sometimes it helps. Sometimes it lessens the aura from 20 mins till maybe 10 mins and sometimes it prevents the numbness and brain confusion. I carry the med in a pill case around my neck on a lanyard that's how bad this is. It all started with my last pregnancy 8 yrs ago....

G.laine
New Member


Date Joined Jul 2012
Total Posts : 6
   Posted 9/22/2014 2:33 AM (GMT -7)   
As a migraine sufferer since a teenager I am sadly getting worse instead of better. At the age of 59 I had hoped they would be getting less instead of more. Mostly wake up at 5 or 6am with one so having to work at 8am take a triptan which enables me to work then have to come home and lie down unable to do anything. Then this drags on for days and my gp says only one triptan per migraine so I take Ibuprofen for pain then - I have missed so many family occasions due to this as almost always I am ill over weekends. I am feeling so fed up all the time as my life seems to revolve round migraines now.
I am on 30mg Amitriptyline for prevention which seems to lessen the severity but does not stop them.
Where do I go from here - so sad.

CountingMySpoons
Regular Member


Date Joined Sep 2014
Total Posts : 225
   Posted 9/30/2014 7:48 AM (GMT -7)   
I have a lot of issues with my eyes (related to migraines and cluster headaches) and I know what it's like to constantly be told that your eyes are fine when things obviously aren't. The migraines and clusters affect my vision (it gets worse, and I get extremely light sensitive - I wear sunglasses at night). My eye doc finally did give me a prescription for glasses (even though my eyes were still practically 20/20 or better). She said she wouldn't normally give a prescription where my eyes were at, but it did help. I think if nothing else just wearing the glasses helps cut the glare.

Unless you live with chronic migraine it's pretty much impossible to imagine what we go through. I've been dealing with this for more than 4 years (the chronic stuff) but have had worse bouts of chronic migraines in the past (a 4 month stretch in 2008).
Julie,
Counting My Spoons - Living well despite chronic illness.

Fibromyalgia, Migraines, Cluster Headaches, Endometriosis, Hypothyroid
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