newly diagnosed complex migraine with aura post-covid
Hello – I had an exhaustive workup at Mayo last July after experiencing an episode that seemed like a TIA (transient ischemic attack). The neurologist finally diagnosed complex migraine with aura. I am 66 years old and had one more typical migraine when I was 20, and nothing since then. Since that first episode, I have had four more, and each has varied slightly in nature but all have been quite disturbing in that I often have a period where I slur my words, and then the actual migraine is followed by 2-7 days of brain fog that is distressing. My Mayo neurologist did not suggest any medication, but I did connect with a local neurologist who suggested I try Nurtec, which is taken at the first symptom and can work for my type of migraine. Medicare does not pay for it. I broke down and bought an 8-pack, at $100/pill, and keep one with me always. Since getting the med, I did have one migraine but it was the middle of the night and I was so out of it that I didn't think to take the pill until I was well into the episode. The pulmonologist did determine that I had had covid, due to signs he saw on my lung CT. I have come to the conclusion that my sudden onset of migraine is connected to the covid. Anyone else out there with a similar story?
Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.
Try vitamin B2 and Magnesium.
i've had covid twice (march 2020/dec 2021). Had headaches from white LED lights after first time. Now have migraines weekly. Just got prescribed two medications, but Doc also said B2 and Magnesium could help.
It's been one week on the supplements and not the medications and … no headaches this week so far 🙂
hi. i too have suffered with migraines with auras. they started about age 18 and i would have them once in a blue moon. then when i hit 40 they started coming every tine i turned around. lasted for 24-48 hrs. then an article appeared in people magazine about head trainer for san francisco 49ers. he discovered a cocktail of 2 aleive, 1 magnesium and 1 b2 tablet. he fave this coctail to one of his football players that struggled with migraines. so i tried it too. it worked for a long time. but yyoy myst take it daily to keep away migraines. then read a book on the effects of food on migraines and it suggested getting tested for food allergies. this turned out to be my path. i had recently moved to a new area abd testing showed a build up of iron and aluminum in my system – both minerals were found in the water supply because pipes were old. i immediately switched to bottle water for drinking and cooking. my husband gad not been affected by the minerals but i was. i went thru 6 weeks of celation therapy- easy peasy. i also found i was heavily reactive to msg, aged cheese and green beans! i had to give these up. have not gad a migraine since- almost 20 years except few instance where msg was in the food. long story but hopefully illustrates that both environmental factors as well as food can be possible triggers for you. find your triggers . keep a journal every day of what you eat , drink and see if you can spit triggers. tgen get tested. while it nay ve expensive to test it can beneficial. long term impacts of continued migraines are strokes. Good luck
sorry i have fat fingers and eye sight issues for typing
Thanks for your response! What a mystery it can be and it sounds like you did the right detective work. A friend suggested just yesterday that I keep not only a food journal but a 'life' journal to see if there is an identifiable trigger. It makes sense. thanks again.
Thanks so much for your comment and your encouragement! Hope your good streak continues!
A life journal can be really helpful in your investigative detective work, @shan77. I find it I can stick to keep a journal or record of daily things if I keep it simple and consistent, like simply writing the activity or rating my symptom on a scale of 1 to 3 good, medium, bad. If I went into more detail in my initial enthusiasm, then I didn't stick to it.
Did you start keeping a journal to help discover triggers?
Thanks, Colleen. Yes, trying to figure out triggers. It's a challenge. I think you are right about keeping it simple – the first bunch of days I tried to record just about everything and I don't think that's sustainable.
Felt the need to respond to you. I will be 70 next month and have chosen not to do the vaccine. (I never had a vaccine that didn't try to kill me, honest!) I am pretty new to all this, I had covid Oct. 14,2022. Other than the absolutely WORST headache in my life, I would rate my actual bout with Covid as mild. However, the post covid effects have been mind-blowing. It started with an increase in anxiety that just kept getting worse as days went by. This was followed by brain fog that became so intense that I just quit talking. I had moments that I couldn't put a sentence together. Forgetting things I KNEW I should know. Awful insomnia. Unbearable body pain. Now here is where it gets interesting. I had migraines, bad ones(passed down generationally to the female side) all my life that no medication ever helped. BUT prior to covid I had only had one aural migraine, no pain, you just see things that aren't there. Post Covid I've had 4 aural migraines in just the past three weeks! From what I've read, this is not uncommon, we just don't know what the connection is until we ask Google the RIGHT question. It's very hard to put everything that's happened in a post but you get the general idea…it's been horrible!! So here is the most important stuff, things that work for me.
1) ASHWAGANDHA is an herbal supplement that I can't say enough about, rave about really. It decreased anxiety and brain fog almost immediately. I am serious when I say I was non-functional. Ashwagandha got me going again. I take 1,300 mg once(some days twice) a day. Maybe go to your local herbalist and discuss this with them?
2) EMDR therapy….yes, I DO have a therapist. I've been in therapy for 10 years and I've tried it all. NOTHING has been as effective as this. Do you hear me? In ten years this had been the most beneficial(no medication!) form of therapy I have EVER experienced. Since post covid symptoms started I've gone to my appointment a hot mess and left feeling incredible. The draw back here is you need a therapist but if your post covid problems are as bad or worse than mine…you probably need one anyway! Google it. It's such a simple process that I was totally sceptical in the beginning but it made a difference immediately. Word of caution: I don't think it would be a good idea to try it without a therapist. Who doesn't need guidance through their brain? Not me! Ok, nuff said for now. I hope this is helpful for you and all the folks that might read it. Best wishes, Renee.
I was diagnosed with migrane as a side note in January 2020 by my neurologist during a MS work up because i was having headaches behind my eye every morning for a month. No other migrane symptoms besides mild swelling around the eye and general sensitivity to light that I’ve had for a very long time. Ive had MS-like symptoms for 15 years but never found any evidence of MS, however I’ve never had any kind of major migrane or aura symptoms before, so I don’t think it’s related to what I am experiencing now. I think I had 1 single typical migrane ever in my life (headache, photophobia, nausea). It’s really never been that much of an issue until now. I got covid in June 2022. Was very mild, almost no symptoms but 4 days in I ended up in the ER with temporary stroke symptoms (vision loss, limb numbness, facial tingling). No headache. They said it might have been a TIA. In the 5 months that have followed, I have had 8 episodes of severe vision loss that resemble migrane aura.. but no headache. Occasionally there will be tingling/weakness/numbness in one arm with it. It’s clear that this was caused by Covid. I never had aura or hardly any migrane activity in my life before, and now it’s so severe and frequent that I can’t drive anymore. I’m 31. I was vaccinated for covid. Doctors haven’t given a diagnosis or confirmed that it is actual “migrane aura without headache”, but they ruled out stroke. Don’t have answers, but I hope this validates your suspicions about covid being the cause.
I had covid 12/17/22 until about 12/28/22 when most of my symptoms finally went away (still had coughing, tired, etc). On 12/30 I was working and suddenly had memory loss, and didn't know if I and my family had covid. It happened when I was on a work call and suddenly felt like something wasn't right in my thinking, because suddenly things "scattered" in my mind and didn't make sense. Scariest thing I ever experienced. To make a long story short, I went to the emergency room, and immediately upon arriving (about 45 min after the brief memory loss) I began having an aura. I've been diagnosed with Complex Migraines (and Vestibular Disorder) before and have had several auras, so as soon as it came on (I wasn't even out of the ambulance yet) I immediately suspected that the brief sudden memory loss and now the aura, was an impending migraine. SURE ENOUGH, I HAD 6 AURA MIGRAINES while in the hospital, through a total of about 6 hours. I had also had one the day prior but didn't think much about it. Again, 2 days after hospital trip, I had another. Today, I had another. That's 9 Auras in 9 days. Interestingly, these are NOT being followed by migraine pain. Lastly, my anxiety has gone up significantly which I've not experienced in years, and bloodwork from the emergency room that night revealed very high platelet count (687) which scared the heck out of me. Again, the Complex Migraine I was diagnosed with at the hospital, was WITHIN A FEW DAYS of my last major covid symptoms. I am hoping the high platelet (and high white blood cells) count is just due to the covid my body had just gotten through. But I'll know more in a few days as I've scheduled a Hematologist appt.
I DEFINITELY believe based on other's stories here that my uptick in auras is a result of covid. I researched a bit and also saw people with general migraines (mine are Complex due to different symptoms with Vestibular Disorder) are suffering more now with more migraines after having covid.
Btw, I'm unvaxxed due to Vestibular Disorder, which covid has been known to provoke, so I was fearful in vaccinating because I already have Vestibular Disorder.