Hello Teri,

     As I said, I'm a Registered Nurse, so the onset of symptoms was especially terrifying. Also-I was home alone when it started. I tried to call my wife, but she was out of the office and had turned off her cell so that no one could bother her. I got trough to her secretary who noted my slurred speech. She told me to open the inner front door, unlock the storm door (This was during the winter) and lie down in the entryway with my wallet (which has my ID and insurance cards in it) on my chest. She called 911 on another line while trying to keep me calm. Oh, by the way, yjis occurred during a major snow storm. They told me later that it took over an hour and a half to get me to the hospital whaere I worked. This is usually a 15 minute drive.

Interesting, my son who is now 19 had a similar attack as you, about a yr or so ago. Watching a movie, aura in right eye, then tingling in right fingers and then up arm and major headache.  I noticed he did not have slurred speech, but could not articulate the words he wanted to say. He also found out about 6 months later that he also had bicuspid aortic value. Makes you wonder if there is any connection????

It is great to FINALLY find information online like this!

As a Registered Nurse, it was mind-boggling that a person could be treated as badly as I was, for so long--or that I put up with that! 

Bad or inappropirate treatment happens all the time, though.  

With worsening economic pictures, it may get worse before it gets better.

We have to be our own best advocates; few have any who will do that for us.

Have looked online for description of optical scintilla, but unable to find description. 

What is that?

Is there another name for it?

I had a--for want of better words--migraine stroke in 1996.

Blacked out behind the wheel. 

Had nearly unnoticable aura, in fact, thot I was having a better-than-usual-day [context: I was always having some level of migraine, for well over 15 years]. 

I tended to strive to ignore anything less than an episode that put me to bed in a dark room.

That particular episode started as I turned a corner, about 10 miles from home, on a surface street, after the light turned green.  

Vision went to bilateral tunnel vision, then narrowed entirely to black, taking maybe seconds. Lost all senses.

Only traveled a short distance, since foot came off accelerator. 

Vision returned first, with hearing a close second.

Had NO clue what anything was, just could see things like opening eyes in strange room after disorienting sleep.

Then very vague familiarity of what the car and it's parts did, so commenced driving, slowly figured how to get on freeway [still not knowing much of anything, other than a vague familiarity for where I was headed], and somehow, made it to work, another 10 miles farther down the road. 

By that time, had trouble with speech, word retrieval, thought processing, balance, grip strength, coordination, eyes ability to focus, name recollection--everything, but while I recognized far more, things were still disorienting.  

And I was afraid that if anyone knew what happened, I would lose everything-- 

afraid to let anyone who knew me become aware of it; so worked very hard to get back strength, coordination, verbal, etc., hiding it the whole time. 

Basics took about a week, then a couple weeks to get enough grip strength to trust holding a glass of water with one hand, be able to do a fair job of brushing teeth, etc.  I suddenly got pretty good at letting others do things I normally did, and delegating others to do things I had previously pointedly taught them to do in other ways.  No one asked any questions: they were all so under their own huge stress loads, they simply didn't notice.

I did try calling our provider. 

Kaiser Hosp. in Martinez refused to get me in to a neurologist for well over a month after the event--said they were full up, even though I said I was afraid I had some sort of stroke event, and had a long history of near-constant migraines. 

After 2 calls and 2 refusals, then that very delayed, very cursory neuro exam*, I opted to take care of it myself, hiding it as much as possible. 

*Neuro check = touch nose with finger while eyes are closed, walk on tip toes across room, and few other similar; the neurologist barely spoke english, didn't listen to what I was saying, or coulnd't understand what I told her. 

No other tests done. 

I wobbled on my toes, and missed the nose by a hair, but close enough she thot it was fine. I specifically asked if there should be an MRI, but she said no.

Nearly 15 years later now, some symptoms persist that some Docs call "normal limits" but which I feel are great deficits, and, a few things that have really made living tougher, such as s slight difficulty swallowing, and the bit with the eyes not wanting to focus, requiring prisms for reading [it took almost 4 years to find a Doc who figured that out]. 

One eye Doc had waved me off, saying my weird eyesight was because I was "getting old"--when I said "Old does NOT happen in a matter of minutes-what causes that?"He still laughed me off.

Eyes still have a hard time staying focused on anything, and tend to meander off-target when I try to look at things. It took almost 4 years to find eye-doc who figured I needed prisms to read, and needed trifocals.

It took over 5 years to find another neurologist who ordered an MRI [way too late!], who GUESSED I probably had something like a complex migraine, but he was not sure, and was not much other help.

The more tired I get, the worse the symptoms. 

Still have episodic stuttering/slurring of speech; glitches with swallowing deficit.

Still have some word and memory retrieval issues, occasional balance episodes, and some coordination glitches.  Thought-processing can be troublesome--it takes me a long time to compose anything in writing, but writing is preferered, since trying to verbalize ideas can come out wrong.

Tired and hurting most of the time. 

Never had BP issues until a few years ago, then suddenly have episodic increased BP.  

Old attempts to modify migraines using Inderal or ergot derivatives failed--only got side effects. Unwilling to go through what one sibling has gone through with pills and side effects.

NOTE:

Docs talk in terms of "normal limits".

BUT, if your "normal" was far above the average person's usual, you will feel deficits more acutely, as you no longer function like you are used to functioning.

These are losses.

Losses cause grief that needs processing!

I have basically given up on Docs, choosing instead for using herbals, nutritional, other alternative approaches. 

Have not done those as well as I should, but do see results.  

An acupuncutrist imght do well treating this, as that had helped in the past with migraine relief. 

TAKE-AWAYS? 

1. It is normal instinct for any animal [that's us humans, too!] to try to hide deficits and ills.  STOP hiding, and get help. If the first Docs or systems fail to respond right, keep looking for others who do it right. 

Get documentation for everything. Keep a diary or a calendar with daily comments listing symptoms, experiences--these are documentation!!!

2. There can be long term "leftovers"

of symptoms from Complex Migraine "stroke", because cutting-off nutrients and O2 from the brain, regardless of cause, does damage, no matter what they label it.

3. Keep working hard to rehab.

It can be fiddly, lonely, frustrating work, but much rehab is stuff you can do yourself to regain muscle strength, coordination, verbal and thought-processing, etc.  Even 15 years later, some things can still improve.

4. If you apply for disability,

and get told you lack proper diagnosis for SSDI, keep at them.

Use the phone, write letters, get others to write letters describing your symptoms and behaviors they have witnessed. 

Damage from migraines/complex migraines/migraine strokes, is a BRAIN INJURY.

Make sure that term is used, because that is what it is, and that term is more clearly understood.

Get letters attesting to how you functioned before the damage was done.

You need better, more thorough documentation, and probably a lawyer who can sit there in the court and give answers to the SSA rep who tries to find jobs you can still do. 

Put every symptom and diagnosis on your application that messes with your ability to work. 

Keep at it.

I put up with overwhelming migraines almost 24/7, for well over 15 years;

Docs and E.R.'s accused me of drug-seeking, faking it, attention-getting, etc., before I utterly caved under pressures, and figured out that I could put together application to get help.

It didn't get much medical help, but it got me respite from working, by providing a small safety net financially, and access to other services--and helped by removing some of the stresses that were feeding the Migraines. 

It took every bit of 2 years for me to go through the SSDI process, mostly on my own, but also with a lawyer who advocated for me when no one else would. 

Even the SSI Judge was nasty and acusatory, but grudgingly awarded the SSDI I should have had many months sooner "cannot give it to you on any single diagnosis, but because there are so many things going on, I award it".

SSA still sends letters asking if I have been able to work, or been attending classes, etc., or other enticements to get me to work. 

[Believe me, if I could handle working, I would have done so long ago!] 

That is one problem with SSDI that gets to me, because it comes across as more attempts to discredit what I have been living with for so long--even though I know, logically, that this is simply a poorly designed System operating as it does. 

It still forces me to go beg another Doc to please write a letter of substantiation- --which costs me money I don't have, and takes up the Doc's time for something that should not need to be continually re-answered.

EVENTUALLY, maybe the SSDI system will get a clue, that some things simply do not disappear--quadriplegics tend to stay that way, and migraineurs tend to stay that way.  Brain damage is brain damage, and tends to stay that way.

SSA needs to get a clue: save everyone some extraneous paperwork and people-hours!

It is a relief that there is so much more information online now. 

Hopefully, this will help prevent other people from going through what I went through.   Best yet, more is being learned in even the last year about migraines of all kinds, than has ever been posted.

THANK YOU! 

This can really help those struggling with it.

Migraines are ALWAYS caused by multiple things--hormones, heredity, malformations of nerves/blood vessels, mis-firing chemistry, exposures to chemicals, stresses, illnesses, injuries, etc.    All these need sorted out.   People need to be assessed as whole-person-pictures, not just one illness.

Chi

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My 19 yo daughter has suffered from migraines since birth. As a small child she suffered abdominal migraines with cyclic vomiting. Ar 5 the migraines became almost daily . The pain so severe she pulled her hair out. Constant screaming due to pain. Doctors treated her with almost all known migraine rx, even though they were for people over 18. They did surgery, nothing even slowed them down. She caught a break, when they changed to 2 weeks with migraines and 2 without. She finally got alittle peace. That didn't last long when they return to 30 days a month. She was bed ridden, constant pain and the screaming.That continues for years, but she got a day or to where they stopped inbetween. At 9 I didn't think she's make it, weight down to about 38 pounds, the vomiting, pain and screaming. Unfortunately she has not improved much over the years, bedridden, pain and vomiting. Trying for SSA disability and not going well. rX DOESN'T WORK ON HER MIGRAINES. Doctors blow her off. Help