Migraine aura unable to cope
Posted , 22 users are following.
I am looking for ways to cope with having migraine with aura. Prior to two months ago, I never heard of a migraine with aura. I have suffered from menstrual migraine for roughly 7/8 years, but they have only consisted of intense one sided pain that would last 24 hours. I was at work on October 17th, when suddenly everything seemed too bright. Then, I developed what I have since learned is a scotoma. It slowly got larger until it turned into colorful triangles that covered my entire view. The whole episode lasted roughly 30 minutes. I was brought by ambulance to the hospital and after many tests was told it was an ocular migraine. Three days later, I woke up to a zig zag pattern which turned into a bright arch that made its way across my vision in about 20 minutes. Then, two days after the second, I had another zig zag only aura while in doctor's office waiting room. To be totally honest, I feel like I have PTSD.
I am completely traumatized by the whole experience. I know it may seem silly to some of you, but I truly had no idea what was happening to me. I thought I was fainting due to a heavy perimenopausal period. I'm not sure how to get over this fear. I send every day worrying that it will happen again. I haven't been to work since the initial incident and am on the cusp of losing my professional career. I am practically housebound and am afraid to be alone. This experience has completely changed my life.
I should also mention that my vision has been blurry/wonky ever since the aura. I am not sure if it is migraine related or due to perimenopause. All I know is that I am afraid and no one I know in real life has ever experienced an aura. I feel very alone.
2 likes, 105 replies
sara97862 staci88515
Posted
Hi Staci, I struggle with migraine with aura, too. I hate it. Not being able to trust your own body to just get through the day is terrifying~~
As i get closer to no periods at all, I have them less intensely. One of the big triggers for me is muscle tension, and Dr prescribed Fioricet for that. It does help me stay at a functional more often.
staci88515 sara97862
Posted
Did you always have them or is it a symptom of perimenopause? I hope I am getting closer to no periods. I have a heavy period every 20 days.
sara97862 staci88515
Posted
I had my first migraine with aura at 38, the day after my daughter was born. I was still in hospital after C Section, or I would have really freaked out. Several of the nurses were migraineurs also. It was a huge comfort, seeing them be fully functioning career women with this condition.
Ever since then, hormone changes have been my biggest trigger.
lizzie_18070 sara97862
Posted
i never knew they could start later on in life, but are obvioulsy because of the huge hormonal change in our bodies. do you take anything for yours? or figured out a way to prevent them in any way? ive just started the mini pill to see if it helps level out my hormones .
thank you.
Millymoos sara97862
Posted
Hello Sara97862,
how old are you now if you don't mind me asking? how frequent do you get yours and what are they like?
thanks
pinkcatfairy lizzie_18070
Posted
I never had migraine auras until i reached 51 and going into menopause and at 55 now I still get them but less frequently!
sara97862 Millymoos
Posted
Hi Milly,
I am 48 now.
I'm having a real rough time right now (migraining every 4 or 5 days this month)... my last 2 cycles were 35 days, then 21 days, so I know it's hormone craziness.
Before this streak, I had been able to cut back on my meds for several months, and only had 2 or 3 a month (every 10 days to 2 weeks).
I hope this message finds you well!!
sara97862 Millymoos
Posted
oh shoot, forgot to answer "what are they like".
Usually, I have a really good day beforehand... good energy, low aches and pains, good appetite.
Then I get very anxious for no reason, cold hands and feet, extremely sensitive to smells/light/sound, I can see a lightning storm when I close my eyes, and my digestion slows to an absolute crawl and sometimes my gut cramps. Rarely, I get big spots in my vision that look like I have been staring at the sun. That usually passes pretty quickly... an hour or less.
Finally, I get pins and needles in one eye (not the ice pick usually), and my skin on my neck and back feels like it's on fire for a few hours. That and the anxiety are my least favorite symptoms.
sara97862 lizzie_18070
Posted
Hi Lizzie,
I take something called fioricet for the tension that leads up to the pain.
Normally, that makes it so I can stay functional.
The past few weeks have been rough... a recent back injury has me very tense, plus my cycles have been wonky the last 2 months.
How are you getting on with the mini pill?
lizzie_18070 sara97862
Posted
oh im so sorry to hear.
i hope you get some relief soon.
i dont know if this helps but since i started the progrsterone pill i havent had one aura. i also had a hormone tesr and discovered that my progesterobe levels were super low to that may have been what causes my auras. it makes sense because my auras only began after having my daughter.
have you had a hormone test done?
DalaiLama staci88515
Edited
Staci --
I will give you a different perspective.
You are lucky. You and I suffer from the LEAST physically damaging Migraine type there is. I have been getting them for 20 years and the first time I got one, I thought I was going to drop dead right where I was sitting. Literally, I thought my ticket was punched. I was asking the people all around me if my face was drooping or was a slurring my words. they all looked at me, like I had three heads and said...."um no, why are you asking?". Ran into the bathroom to look in the mirror to only see half of my reflection and the rest surrounded by zig zag lines.
Went scrambling to see an eye doctor thinking, I then MUST have a detached retina. I tel him what is going on, smiles, tells me everything will be OK either way....nothing. Zero. Zip. Healthy retina, healthy everything.
Must be stress, my wife said. Tried to slow down a bit (hard when working on a trading floor). Never came back...until....
7 years later in another very stressful job. Same symptoms, but this time I was a little more "in the know".
Remembered the golden rule of common migraine auras from a doctor I now: "no slurring , no drooping, both eyes and shiny, makes you miney!" Had a person at work who suffered from "ice pick in her head" Migraines who I would go to and ask her about the slurring and drooping. Check. Both eyes. Check. Shining Scotoma. Check. Ok. Just breathe and wait 30 minutes. Close eyes or take a walk. Oh and by the way, they started coming every other week. Then every week.
When she got Migraines, she was out for 4 DAYS. In bed, sobbing with pain, unable to eat or see any form of light. Her brain is actually scarred (white matter) from her condition. Wow. Kind of puts my little 30 minute "acid trip" in focus.
When I went to the Neuro (Migraine specialist) and told him I was having one while DRIVING to the appointment and another while we were talking, he looked at me c**k-eyed, ran me through a battery of tests and questions and said the following. "You have painless migraines, you will get 2 or 3 of the phases, but most likely NOT the fourth (Pain phase). Take OTC medication (IB or NA), when one starts and enjoy the "acid trip" I could give you medication, but that may not work and may make it WORSE. So I get a slap on the rear and a "go get 'em" talk, I left.
I am going to tell you this now from experience. I have presented to CEOs of Fortune 500 companies and had raging aura. I have been in meetings over $500 million dollar deals and had the raging aura. I have had them while driving. I pull off at the next exit and wait the required 30 minutes (so the chicken becomes a little overcooked, meh!). I have been working on major presentations for my job and had raging auras. OK, I eventually decided, every time I get one at work, I'll just close my eyes for 30 minutes and tilt my chair back and grab a nap.
My current boss always knocks on my door, sees me facing the window with my eyes closed and will talk to me anyway (He knows I get them, I told him what the solution was, we STILL have conversations with me not facing him with my eyes closed!)
The real problems you face is loss of control, fear of uncertainty of WHEN they will happen and fear of what others may think of you because you have this "condition".I will tell you this..ready...this WILL change your life....for the better.
You will appreciate the little things more, hug family more, SLOW DOWN and enjoy life a little more. This scary thing will too pass, but the real question is this: What scares you most about this condition? Why does something that most people who have painful migraines trade you for in a second, scare you and make you anxious? Why do you immediately jump to PTSD for something, that when checked out with the proper doctors (or two or three if you are anxious) all state is harmless, and can even help you grab a nap during the day, if you play your cards right!
For me the PRODROME is the absolute worst phase. Bathroom breaks every 2 hours, exhausted, foggy, no sleeping, cranky, etc... The scotoma is almost a welcome RELIEF that things will eventually get back to normal.
Look, I was diagnosed 7 years ago with an incurable condition that will be with me the rest of my life. Not a DEADLY condition (3% chance), but an incurable one. I had these auras, before I was diagnosed, had them after I was diagnosed and will have them until the day my ticket is punched. Would you trade the next 30 to 50 years worrying about something that may or may not happen at the wrong time?
Life is short. Life is beautiful. Life throws things at you and you adjust. Life is.... fill in your own thing.
Breathe. Smile. Love. Believe.
Namaste.
staci88515 DalaiLama
Posted
Thank you for your lengthy reply. It has been some time since my original post. I have learned to deal with things slightly better. It is still controlling my life though. I can't tell you why I find them so frightening. My vision has been permanently affected and I was diagnosed with persistent migraine status. My vision is always off, but when I get the hint of something odd, I instantly panic. I have spoken to many individuals with migraine aura who aren't phased by them in the least, I truly have no idea why I am so afraid. Perhaps, it is because the first incident was traumatic because I didn't know what was happening. Plus, the thought of being incapacitated for 30+ minutes is unnerving. It is a loss of control and the fact that it can occur any time and any place. It makes me feel alone and vulnerable. Add in the fact that most people have never heard of an aura...it becomes isolating.
FYI - I am fortunate that I don't have debilitating migraines often, but I do get them 1-2 times a month for the past 8+ years. I am literally in bed for 24 hours with ice packs on my head suffering and trying not to vomit. I only recently (October) had a migraine aura.
Things could be much worse. I certainly don't want to be worrying about this for the "next 30 years." I just don't know how to get past the fear. It has ruined my life and career. My entire life changed that day. I don't know how to get back to normal.
Millymoos staci88515
Posted
Hello,
it's reassuring to know I am not alone and other people do have these auras. Yesterday I had one that lasted around 30 to 40 minutes then about an hour later I had another one. This has totally freaked me out and I am in total fear of these again. Has this happened to anyone else?
Many thanks
staci88515 Millymoos
Posted
I had three in a week when it first happened. I have read countless posts on this forums and others, where people have had multiple auras in one day. You are not alone. It is so scary and the anticipation is terrible. I truly feel for all of us who live our lives in fear. xo
terryresearcher staci88515
Posted
Hi Staci,
I've suffered with aura migraines for 25 years I have 45 minutes of zig zags and broken images and then the massive headache. I have never told my doctor...but have just made an appointment to see him as I seem to have one every other day. Showery weather doesn't help as I believe atmospheric pressure causes migraines as well as bright lights, exercise, not enough sleep etc, etc never bothered with the doctor as I believe they put you on drugs that challenge other parts of your system, so tried alternatives, but giving up on them. So you are definitely not alone.
staci88515 terryresearcher
Posted
Thank you for you reply. I recently just had another one. I have an instant panic attack as I find them frightening. Please let me know what your doctor says. I am not on any medications.