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
Millymoos staci88515
Posted
I am looking for some advice on the auras I have been experiencing. Many years back I remember getting an odd one. Recently I am having them every couple of days. I am 44 and they were around the time of my period at first so I wasn't too worried as I was linking them to my period. Now they are every couple of days and so cannot be linked to my period. I am now really concerned it is something sinister like a brain tumour. I don't know anyone who has these and when I mention mine you can just see look on face as if to say "really you get flashing zig zags that block your vision". I was hoping they were linked to maybe perimenopause as I am 44 but nothing I have read states that in fact they say the opposite that with perimenopause you may get general migraine without aura so that cannot be it. Any advice or help would be greatly appreciated.
Many thanks
staci88515 Millymoos
Posted
I am by no means an expert. All I can tell you is it happened on the third day of a heavy period. When I saw the neurologist, he said that he sees lots of women my age for the first time. This gave me the impression that it is related to hormones.
pinkcatfairy Millymoos
Posted
Dear millymoos
I started getting these auras around the same time my periods went wierd going into menopause, then they stopped for a while, I had my ovaries out due to family history etc and i still get them post menopause!
Lolasmom staci88515
Posted
I started my auras at menopause. The weird thing about mine is that I get them seasonally. |In Sept/March and again in March/April. I just had one last week. It lasted about 20 minutes.
The thing is, is that I never get a headache after, just the optical aura.
I do have daily facial pressure that also plugs my left ear and makes me all off balance. Neuro says its a type of migraine. So frustrating to have this awful feeling usually daily that comes on around the same time of day
staci88515 Lolasmom
Posted
I didn't have a headache with mine either. Mine struck completely out of the blue. I had never heard of an aura before it happened to me, so while it was happening, I was terrified. I have been experiencing head pressure as well and have dizziness. I actually posted a few days ago about vertigo. I woke up, turned over in bed, sat up and the whole room was spinning. My whole life has been turned upside down by all of this nonsense.
Lolasmom staci88515
Posted
Staci, from what you explained that really sounds like BVVP.. I get that seasonally too.|Again in the spring and fall.
I knew which ear it was and tried everything to avoid it. |It would last 2-4 weeks until the crystals settled. It is the worst feeling ever. \i finally last spring went for physio for have the testing and then maneuver to put back in place. Not sure why I waited so long.So far so good for this spring that \I have not had an episode
There are many videos on line showing how to do the maneauver......but \I would not suggest doing this on your own. The thing is those crystals that have come loose can be from about 4 different canals. Depending on which canal they are dislodged will determine which maneauver is done.Only a qualified person can do the testing to determine this, and then do the proper maneuver.
The testing is done with googles, and they throw you into vertigo and watch which way your eyes shake. |Depending on which way your eye shake will determine which canal is affective.
PM me if you would like any other information
staci88515 Lolasmom
Posted
Oh, my! I could not imagine doing something to cause the vertigo! Just the thought gives me anxiety. A few people have suggested BVVP. I was gardening the day before and was bent at the waist with my head down for an extended period of time. Maybe that caused the crystals to move out of place. Migraine auras and vertigo...it is too much to handle.
Lolasmom staci88515
Posted
It is nasty when the vertigo is forced with the check up, but so worth it.
I drove home after that, and only having an off balance feeling for a couple of weeks, but no vertigo
Once the procedure is done, I wore a collar support as you are not to move your head down, bit it was no big deal.Also it was suggested to sleep somewhat upright for a couple of nights.
If I get it again, I will not wait it out. Off the physio I will go
PM me if you need to chat
staci88515 Lolasmom
Posted
Thank you so much!
lizzie_18070 staci88515
Posted
staci88515 I also started getting auras out of no where when i turned 30 years old after having my daughter . i have extreme anxiety now about them and feel my life has completely changed. about 3 months ago i also started experiencing dizzy/light headed feeling around my period
and lasting a week. ive been told its vestibular migraines however my neurologist wasnt much help and didnt really provide much clarity about them. i am often very down now and feel scared most of my time. i often tell my partner that i wish life was what it use to be before i started getting auras and now days on end of dizziness.
staci88515 lizzie_18070
Posted
Oh, Lizzie! I am right there with you. I never heard of a migraine aura before it happened to me six months ago. I was at work with a class full of students when it happened. I was terrified and panicked. No one at work had ever heard of a migraine aura either. I was brought to the ER by ambulance. I can honestly say that the experience has changed my life. I swear I have PTSD from the event. It was 30+ minutes of panic. I couldn't see and lost the ability to speak. It happened again three days later and then two days after the second episode. Since then, I have had 24/7 visual disturbances and have been diagnosed with persistent migraine status.
I have lost all of my confidence. I now have anxiety and suffer from panic attacks. I was a normal professional working woman a few short months ago. Now, I am a pile of fear and nerves. I am leaving my career after this school year because I cannot cope. I am single and the sole earner taking care of my mom. I am so afraid for the future. I don't know what I will do for work.
It is a terrible way to live and I sympathize with anyone going through this ordeal.
Millymoos staci88515
Posted
hello lolasmom
when you said you started getting your aura at menopause was that when your periods had completely stopped or in perimenopause . I am 44 still having periods and getting these terrible auras.
Lolasmom Millymoos
Posted
Mine started when I was passed menopause, BUT I am not surprised you are having this in peri. Because mine are just the ocular episode, I feel very fortunate not to get the headache after.Most not so lucky
staci88515 Millymoos
Posted
I have no idea why my response was deleted. It didn't have any links or medical advice or anything odd. Basically, I said my migraine auras started six months ago at 43. I am still in perimenopause.
Millymoos staci88515
Posted
Thank you I am 44 not sure if I'm in perimenopause yet. My doc is sending me to eye clinic do you think I could ask them to refer me for mri cause I'd rather have that done just to check.
thanks again
staci88515 Millymoos
Posted
Are you in the US? I was sent for an MRI right away. I am 44 now. I am definitely in perimenopause and have been for several years (even though I didn't realize it).
Millymoos staci88515
Posted
No I'm in the UK think it's different here. I will just ask the eye clinic could they send me for one and see what they say. I just don't know if eye specialist are able to do mri scans or is that just a neurologist that can arrange that.
thanks
pinkcatfairy Millymoos
Posted
It was the neurologist who sent me for the Mri (at my request!)
Millymoos pinkcatfairy
Posted
Do you think the eye clinic will be able to send me for mri if I request one?
Thanks
staci88515 Millymoos
Posted
Millymoos, I have had an MRI and all was clear. My neurologist sent me for the scan.