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newly diagnosed complex migraine with aura post-covid

Posted by shan77 @shan77, May 5, 2022

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?

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audreyd | @audreyd | Jan 5, 2023

I'd also like to add, my vision seems to have been affected since covid. Seeing words on my screen become blurry, seeing things in my vision that aren't there (ex: I'll see something that looks like a big bug crawling on something in my peripheral vision) and eyes feeling puffy and tired. Hope this helps someone. This virus is evil. God only knows the residual effects its having on millions of people around the world, who now have no idea what's wrong with them due to these after-effects.

REPLY
jennifergillan03 | @jennifergillan03 | Jan 10, 2023
In reply to @audreyd "I had covid 12/17/22 until about 12/28/22 when most of my symptoms finally went away (still..." + (show)
@audreyd

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.

Jump to this post

This was one of the issues I struggled with. The migraines are from brain changes and as you attempt to do what you used to do…. You’ve lost connections between your brain and your body and your short circuiting. I have some exercises I do daily to increase my activity tolerance and I monitor my HRV. You’ve got to begin rewriting you brain and build new neurological pathway. And SPECT test shows the change on the blood flow in your brain that is most likely what is creating the symptoms. I was treated at Mayo and Aviv and I’m finally recovering free of the 13 meds including injections to help manage my symptoms and pain. I have more content on social media #covidrecoverymama.

REPLY
oklahomahaley | @oklahomahaley | Mar 20, 2023

Yes, I wanted to tell you to get on the Nurtec.com site and they will give you a code for FREE Nurtec. I’ve had 4 of the 8 packs refilled. But I’m sad because after week 3, Nurtec stopped working. Then I asked my doctor for Qulipta. She had Qulipta samples. I had, had a post covid 3 week long daily migraine at that point. I had to shut myself in my bathroom or bedroom for the 3 weeks and the Qulipta worked for a week and then I became severely allergic to it. But it gave me a short break from the migraines. I’m waiting to get into a neurologist and a pain clinic. Both appts are many months away. My pcp has given me other old fashion migraine meds mixed with caffeine that do nothing. But I had long covid the first time for 4 months then snap it went 90% away. Then I went back to my dental hygiene job and a sick patient came in and he gave me covid and now I have long haul for 9 months with a lot more symptoms. Just touching my head on a pillow and any changes in light balance etc etc hurts so bad. It’s 6:14 am and I can’t sleep when my head is this bad. I can’t have the tv on. And can be on the phone completely dimmed for very short times. Please share any meds anyone else has found helpful!!!🙏🏼 Haley

REPLY
1 reply
npinner04 | @npinner04 | Mar 21, 2023
In reply to @oklahomahaley "Yes, I wanted to tell you to get on the Nurtec.com site and they will give..." + (show)
@oklahomahaley

Yes, I wanted to tell you to get on the Nurtec.com site and they will give you a code for FREE Nurtec. I’ve had 4 of the 8 packs refilled. But I’m sad because after week 3, Nurtec stopped working. Then I asked my doctor for Qulipta. She had Qulipta samples. I had, had a post covid 3 week long daily migraine at that point. I had to shut myself in my bathroom or bedroom for the 3 weeks and the Qulipta worked for a week and then I became severely allergic to it. But it gave me a short break from the migraines. I’m waiting to get into a neurologist and a pain clinic. Both appts are many months away. My pcp has given me other old fashion migraine meds mixed with caffeine that do nothing. But I had long covid the first time for 4 months then snap it went 90% away. Then I went back to my dental hygiene job and a sick patient came in and he gave me covid and now I have long haul for 9 months with a lot more symptoms. Just touching my head on a pillow and any changes in light balance etc etc hurts so bad. It’s 6:14 am and I can’t sleep when my head is this bad. I can’t have the tv on. And can be on the phone completely dimmed for very short times. Please share any meds anyone else has found helpful!!!🙏🏼 Haley

Jump to this post

I am post covid since September 2021 and the only thing that works for my migraines have been the combo of qulipta daily with nurtec. This sucks, because after awhile it stops working and you have to suffer for a while then start it back up the same combo. It's like your body gets use to it. Good luck and let me know if you find anything better.

REPLY
1 reply
antsy | @antsy | Mar 27, 2023
In reply to @npinner04 "I am post covid since September 2021 and the only thing that works for my migraines..." + (show)
@npinner04

I am post covid since September 2021 and the only thing that works for my migraines have been the combo of qulipta daily with nurtec. This sucks, because after awhile it stops working and you have to suffer for a while then start it back up the same combo. It's like your body gets use to it. Good luck and let me know if you find anything better.

Jump to this post

I had Covid in Sept. '22, and following that I had severe migraines..after being on prednisone (it helped, but couldn't stay on that forever...I discovered CBD oil and amitriptyline 40 mg. gradually cutting down to 30 mg. But the CBD oil is good for so many other aches and pains, I'm staying on it.
This combination has totally helped..all the best to everyone suffering from long Covid..

REPLY
constancebob | @constancebob | May 16, 2023
In reply to @audreyd "I had covid 12/17/22 until about 12/28/22 when most of my symptoms finally went away (still..." + (show)
@audreyd

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.

Jump to this post

I have had so many migraine aura since I had Covid I had a lot during Covid and now I get them at least two or three times a month or are used to get them like every six months I heard aspirin therapy is good for it but I sure would like a supplement. I’ve tried meds before in the past, and they just threw me for a loop, I for sure so Covid is a trigger for migraine auras

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