I had a lot of friends that took a step back from me when I injured my spine. I was unable to do much of anything physically...I even had to relearn how to walk without a cane (my leg became paralyzed and I had to have emergency spine surgery). I know this is not migraine related but the physical, mental and emotional issues are the same. It still really hurt me when these friends stopped inviting me to the simplest of outings...things that I could participate in. I am a very intelligent individual and I felt very alone and abandoned.
I had that so strongly last week: I decided to go to the supermarket on my bike. But it really felt like a drank way to much, without the nice feeling of being drunk, just the part where you can't seem to keep a straight line, seeing danger coming or are able to find the groceries you were planning to get.
My worst migraines make me extremely nauseous. Even though it doesn't happen with every migraine, this is the symptom I'd want to go away. My boyfriend thought I'd say brain fog but I've gotten to the point where I actually find that anything that happens as a result of my brain fog provides me the comedic relief needed to get through the migraine
I think you broke this down very well. I don’t have migraines but I can relate too much of what you said about how important it is to separate yourself from your disability, the fact that it’s not your fault when you have to cancel plans if something comes up that you can’t control about your body or the way you’re feeling, and that sometimes current you have to tell past you that the goal you had is not going be achievable in the timeframe you thought and that’s OK because current of you is dealing with things that passed you could’ve possibly predicted or imagined. I also think it’s so important to give yourself Grace as you mentioned when it comes to doctors appointments if there are times you didn’t schedule the next one or didn’t speak up during one because you didn’t have the spoons/right headspace to do so then that was you prioritizing what the right thing was for you at the time and making the best of the circumstances in which you found yourself. Like you said all you can do is make the most of the resources you have in the moment and none of us can do anymore then try to make the best decisions we can any given point without having the benefit of future knowledge.
1) The intense feeling of confusion, disorientation, and disassociation. 2)The memory problems and sensory pins and needles on more than just my hands and feet. 3)The depression. Feeling hopeless and dispair is awful. 4)I have the brain fog, disorientation, confusion, memory problems, trouble finding words(putting words together)and the sensory changes, along with fatigue and some muscle weakness on one side for at least a week (if not longer) afterwards. I feel very lonely and misunderstood. Struggle at my job and with driving and I find myself being irritable. I don't like accidently acting or saying something I don't mean at all when I sometimes can't help myself.
The self doubt and self blame is deffinately a big issue for me. I have to remind myself regularly that it is ok to not be able to get up and clean when I am having a bad health day. But it hits me hard when my husband is doing all the cleaning alone a lot of the time. 😢
I love your channel you have really help me not feel so slime with this Chronic condition. No one gets how you feel or what you are going through but You do and I thank you for sharing.
Being able to drive safely. Yesterday I had a migraine and I was driving to have lunch with my husband and about 10 minutes on I was like "I should not be driving...." but I was already 10 minutes in so I didn't really know what to do.
I would change the dizziness and lightheaded symptoms. Also, I would really like to be able to walk without a cane/walker. And finally, I would like to be able to stop being so chronic and be able to know that I could be active.
Rushing through my job before I lose all of my peripheral vision and confusions sets in. 🥴 had one a couple weeks ago that had me sweaty, in pain and so so nauseous.
Having to learn how to use vision impaired functions on software when you are "sighted" so you have options to potentially keep working if you loose vision?
1. Get rid of the double vision and trouble focusing my eyes, (so I can read books again). 2. Clear up the slowness and confusion in my brain (So I can understand what I'm reading!). 3. Restore strength and co-ordination to my left side (Hemipeligic migraine make my left side weak and sort of numb and tingly) which I know will bring back some energy too.
I did have a neurology appointment this morning and I told my neurologist that I just want her to come with a magic wand and fix these things for my son and I! She said she wishes she could.
The confusion. Sometimes, I can’t perform trivial tasks. Most of the times, however, I know that I should be able to perform the task because it’s trivial, but I cannot nevertheless. It‘s frustrating.
Ello, as a 40 year veteran, ugh that sounds awfl, I think for me the worse syptoms are brain fog, the inability to remember where something is or the word for that thing and nausea. The impact is that people thinks its just a *bad headache* but to nhew people I always ask if, theyve ever been really drunk, really hungover, ever had food posioning, and ever broken a bone, if they reply yes to those I say now imagine all four of those together, that gets you in the ball park of migraine. I'm on Ajovy since July this year and now I'm not constantly in pain or brain fogged its opened my eyes to how bad I was before, none of the preventatives worked, the botox did then it stopped working.
1. The brain fog/confusion - I do really dumb things when I'm like that. The rest I feel I can deal with. I hate feeling stupid and humiliated when I'm out of the haze and no longer brain fog Shae - Even if that's an overreaction on my part. 2. Allodynia - I get it bad up to 3 days in advance.
implications: clarity in sensation and proprioception, poor sleep quality, reliability most severe symptoms: vertigo, intermittent blindness, LOC most common severe symptoms: confusion/brain fog, pain (allodynia/cervicogenic headache/trigeminal hypersensitivity), vertigo
1) The PAIN, 2) The Mental assault. I know there are people with much worse conditions than mine, but on a daily basis I literally beg God to knock me out, kill me or make it - the pain stop. I don't believe in suicide & I'm not depressed - I am pretty wicked off having to "live" like this - but I won't be the one to take me out. If I'm really lucky, I get 3-4 hours out of bed trying to catch up everything in the house that's fell behind. When I just stand there w/ a blank stare, begin circling like I've started a lone game of Ring Around the Roses,, &/or my speech becomes so slurred & my movements so spastic it looks like I'm partying like 1999...we all know what's happening. ALL HELL IS ABOUT TO BREAK LOOSE. I don't even go to the hospital anymore even though it's becoming extremely difficult for even me to tell it's not a stroke, just another complex migraine that's switched it's pattern. Sure, they MIGHT make the pain go away temporarily, but it always comes back w/ a vengeance within hours. The huge bill that comes with it a few weeks later doesn't help the pain a lot either. 🤷♀️ IF any tests are performed they are going to be normal. That really helps the pain too 🤦♀️ Everyone around me sees my mental capacity & communication skills have tanked. I bear no resemblance to the girl that was the High School Valedictorian, graduated college Summa Cum Laude & always got excellent employee reviews. Until the end when she got sick & couldn't remember how to do the job she had excelled at for years. It was horrifying & humiliating. Making a grocery list that should take a couple minutes at most takes me HOURS. That sounds stupid ik, but the pain is so intense i literally can't think & trying to makes the pain worse. Ive learned to stop fighting my body, let it rest & try later when it is better...even if its the next day, or the next. I used to drive all over the state for work. Today I can't even ride in a car for necessary trips such as taking my child to school or going to the grocery store. It makes the pain even worse & I've almost passed out several times when actually making it to where we need to go. At the very least I make a mad dash to the restroom "just in time." I've stopped being around the very few friends & family that haven't ditched me by now. Between the vertigo, the aphasia, dysartria & dysphasia , I appear intoxicated even though I don't drink. It's beyond embarrassing to me & I know it is my family, especially my teenager. I know it's extremely difficult to carry on a conversation w/ me...I get frustrated listening to myself!!! So I've pretty much become a hermit. It's not like I can really go anywhere anyway.
I can relate to this so much and I'm so sorry your walking through this. Praying you find a provider who can actually help. They are out there. I get ,though,how hard to find them when there's not the cognitive strength to make a sandwich, some days.
Mine would be to have not to feel 1- not feeling sick and being sick 🤢 🤮 2- feeling dizzy ( just started having that symptom) 😵💫 3 - That day after hangover feeing 😔
One of the worst parts of my Chronic Migraines w/Aura is when my head feels like a bowling ball 🎳 for days on end and I can't lift my head up the way I need or want.. 🙃
I would change the diffulty with communication aspect. It really puts a strain on relationships and ive lost friends, good friends, because of misunderstandings and I'm just not the same person I used to be. It hurts to lose friends but I don't blame them. If I could get away from me sometimes....I definitely would. 😂
Nausea...please take the nausea away. I try to get a hold of the nausea first off so I can continue...life? Lol! I get the brain fog and wanting it gone top priority and I was torn between the two. In the end the nausea stops me fully and I can continue on with brain fog. TMI: I am a violent vomiter...I break blood vessels in my face and dry heave waaaaaay too much.
I have chronic muscle e pain 24/7 upper body shoulders armpits are it feal like migraine but no headache have you heard of this.ive had conventional migraines years ago chronic and in my stomach mcas and pots in the past i have had to i have heds Asperger's mri tommoriw again😊
Alcoholics call it a moment of clarity, I call it hell because for one moment in time I get it, everything and I realize who is the problem here and I have the energy and power I once maintained.. and then it is gone.
I am not sure what i could change about my chronic migraine headaches because i more than just have. I also have other disability such as RA, HS, Chronic pain, chronic fatigue and i also have learned disability so i have a numbered of disability.
Ok so no magic wand here but lots of annoying migraine symptoms. 1. Fatigue 2. Numb anything : face, arms or hands. 3. Vertigo and dizziness Is it weird that the numbness bothers me more than the pain? I have a new neurologist that is working on finding me a better combination of medications, so I have hope things will improve soon.
Guess what! If you are "late" with a course launch...I will still be there later buying it. 😂❤❤❤ Ty for posting all this info...I don't have migranes like yours but I have been able to relate to everything in this video.❤❤❤
For me it's the brain fog. I cannot think during a migraine and its so frustrating Second after that, im pretty sure my migraines have been causing me falling issues, and they are also very frustrating Everything else, I can more or less deal with, but I need those two issues solved
Worst implications: 1. Getting through work is torture 2. Losing/disconnecting from friends 3. Scared to do anything just in case migraine happens (low key agoraphobic
I have recently started having migrains, often with nausea and light sensitivity, while still having cluster and icepick headaches. I know cluster headaches are always on one side and can happen daily for days, weeks, or even months. I know icepick headaches usually happen in one temple at a time and feel like electric shock pulses that last a few seconds, and will repeat several times in the day. But I don't know what to expect with migrains. Do migrains come in clusters as well? Is it typical to have them every day for nearly a week, then not again for several days, then every day for nearly another week? My dog has started alerting me early in the day, but the migraine usually hits in the early evening. Is it normal for them to happen around the same time each day? I am keeping a headache journal, but I still can't identify any triggers. I can be at home, in the car, or out shopping. My dog still alerts between 9 and noon and the headache hits between 5 and 7. I am going to see a headache specialist about it, but until then I am just trying to figure out what to expect my new normal to be with migrains added to the mix.
I’d like to be able to stand and walk for “normal” periods of time and total hours during the day / and travel in small cars without risking my dysautonomia and/PPPD (dizzy all the time) triggering a multiple day migraine. I’m down to 1-2 migraine days a month but I have to sit down at least every 2-4 blocks and never get in cars (SUVs vans are ok-ish). There’s not a seat every 2-4 blocks. Rollator not an option because of other stuff. It’s taking over a year to get my wheelchair. 2020 was chronic migraines … but I discovered migraine Jen so not all bad ❤. #ZebraLife #EDS
if I had a magic wand, can I please just use it for all the symptoms lol 1) for me would actually be the postdrome phase, because I hate the fact that it ruins like 2 more days where I can't focus and sometimes still have a bit of head pain but can't take pain killers because I can only take so many per month. And the tiredness. But at the same time I feel like I really need to get back on track and do things somehow. 2) aura. Scary and happens in the worst places. Will say though, it's much better if my boyfriend happens to be there, because he knows what's happening even though I'm unable to communicate then, and he helps me stay calm and not panic. Learning to stay calm when I'm by myself too. Way worse than the postdrome but steals less time so that's nice.
@@MommingwithMigraine I only found your channel recently and it has been helping me so much, the feeling seen thing is so real. One thing that helped me recently is just a mental shift from "I have to be okay", "I have to do things perfectly", to being like yeah you're struggling, of course you are, but being proud of myself for things I do manage to do (outside the aura and headache phase before meds hit, because no way I'm forcing myself to do things through that), even if they seem so small. Migraine me has gotten pretty good at advanced maths, and she's learning to code now, which doesn't even come naturally to normal me. I feel like I have to learn things from scratch, because migraine me cannot physically think around 5 corners in one go, so she needs other ways of doing things. I have been having more good days after forgetting about their existence for a while, and it's been great for getting studying done and being able to spend more time resting when migraines do hit. And gave me the energy needed to work out again which does help with reducing migraine frequency, and just overall feeling better.
That's a very good point, sometimes I forget that the things that are normal to us are not normal to other people! As for Buddy, he'll probably keep working, within the laws of course. With Migraine in my family (leak is, in a way, separate), I'd have to be in remission a while before I just started doing life alone again.
I would wish away: Not being able to think clearly, not being able to read, not being able to socialise without being exhausted afterwards. Actually: not being able to do normal life things. Or maybe even worse: barely being able to, but not quite enough to not do it and having to struggle so much to do simple litlle things that wouldn't have cost any energy if you would feel better. And nobody being able to see how much you are struggling and not just being lazy.
I had a lot of friends that took a step back from me when I injured my spine. I was unable to do much of anything physically...I even had to relearn how to walk without a cane (my leg became paralyzed and I had to have emergency spine surgery). I know this is not migraine related but the physical, mental and emotional issues are the same. It still really hurt me when these friends stopped inviting me to the simplest of outings...things that I could participate in. I am a very intelligent individual and I felt very alone and abandoned.
The drunk like feeling afterwards
For DAYS sometimes 🥴
I had that so strongly last week: I decided to go to the supermarket on my bike. But it really felt like a drank way to much, without the nice feeling of being drunk, just the part where you can't seem to keep a straight line, seeing danger coming or are able to find the groceries you were planning to get.
The aura before the migraine so frightening
Yes!!! What kind do you get?
My worst migraines make me extremely nauseous. Even though it doesn't happen with every migraine, this is the symptom I'd want to go away. My boyfriend thought I'd say brain fog but I've gotten to the point where I actually find that anything that happens as a result of my brain fog provides me the comedic relief needed to get through the migraine
I think you broke this down very well. I don’t have migraines but I can relate too much of what you said about how important it is to separate yourself from your disability, the fact that it’s not your fault when you have to cancel plans if something comes up that you can’t control about your body or the way you’re feeling, and that sometimes current you have to tell past you that the goal you had is not going be achievable in the timeframe you thought and that’s OK because current of you is dealing with things that passed you could’ve possibly predicted or imagined. I also think it’s so important to give yourself Grace as you mentioned when it comes to doctors appointments if there are times you didn’t schedule the next one or didn’t speak up during one because you didn’t have the spoons/right headspace to do so then that was you prioritizing what the right thing was for you at the time and making the best of the circumstances in which you found yourself. Like you said all you can do is make the most of the resources you have in the moment and none of us can do anymore then try to make the best decisions we can any given point without having the benefit of future knowledge.
1) The intense feeling of confusion, disorientation, and disassociation.
2)The memory problems and sensory pins and needles on more than just my hands and feet.
3)The depression. Feeling hopeless and dispair is awful.
4)I have the brain fog, disorientation, confusion, memory problems, trouble finding words(putting words together)and the sensory changes, along with fatigue and some muscle weakness on one side for at least a week (if not longer) afterwards.
I feel very lonely and misunderstood. Struggle at my job and with driving and I find myself being irritable. I don't like accidently acting or saying something I don't mean at all when I sometimes can't help myself.
The self doubt and self blame is deffinately a big issue for me. I have to remind myself regularly that it is ok to not be able to get up and clean when I am having a bad health day. But it hits me hard when my husband is doing all the cleaning alone a lot of the time. 😢
That's something I feel guilty about, even though he is happy to help ☹️
@@MommingwithMigraine God definitely blessed us both with the right partner, didn't He? 🥹
Vertigo and nausea
Horrrrrrrrrible!
100%, I would bring my cognition back to what it is when I'm migraine free. I can deal with the other symptoms if I was just clear-headed!
YES
Ugh same!
I love your channel you have really help me not feel so slime with this Chronic condition. No one gets how you feel or what you are going through but You do and I thank you for sharing.
You are so welcome it's a pleasure to help. You helped me too, by writing in 💜
Being able to drive safely. Yesterday I had a migraine and I was driving to have lunch with my husband and about 10 minutes on I was like "I should not be driving...." but I was already 10 minutes in so I didn't really know what to do.
That's an awful feeling! As much as I can help it, I don't drive anymore.
@MommingwithMigraine my biggest problem is that some of migraines are minor enough to function and some aren't so it's kind of hard to predict
I share your wish, haven't gotten my drivers license because of migraines and chronic headaches. And I am 27 now...
Yep, definitely the brain fog and the loss of confidence in myself is the worst things for me.
I would change the dizziness and lightheaded symptoms. Also, I would really like to be able to walk without a cane/walker. And finally, I would like to be able to stop being so chronic and be able to know that I could be active.
I would remove the horrible pain in my one eye.
Total nuisance isn't it
I would get rid of the pulsating headaches
Rushing through my job before I lose all of my peripheral vision and confusions sets in. 🥴 had one a couple weeks ago that had me sweaty, in pain and so so nauseous.
Awkward conversations with bosses telling them you can't see it right now but you'll get to it later when your eyes come back 💀
Having to learn how to use vision impaired functions on software when you are "sighted" so you have options to potentially keep working if you loose vision?
1. Get rid of the double vision and trouble focusing my eyes, (so I can read books again). 2. Clear up the slowness and confusion in my brain (So I can understand what I'm reading!). 3. Restore strength and co-ordination to my left side (Hemipeligic migraine make my left side weak and sort of numb and tingly) which I know will bring back some energy too.
I did have a neurology appointment this morning and I told my neurologist that I just want her to come with a magic wand and fix these things for my son and I! She said she wishes she could.
Bippity boppity DANG IT I WANMA FIX THOSE THINGS TOO!
The confusion.
Sometimes, I can’t perform trivial tasks. Most of the times, however, I know that I should be able to perform the task because it’s trivial, but I cannot nevertheless. It‘s frustrating.
"I can usually do this" or "I *should* be able to do this" but when you can't even fathom the first step! That's a horrible feeling.
Ello, as a 40 year veteran, ugh that sounds awfl, I think for me the worse syptoms are brain fog, the inability to remember where something is or the word for that thing and nausea. The impact is that people thinks its just a *bad headache* but to nhew people I always ask if, theyve ever been really drunk, really hungover, ever had food posioning, and ever broken a bone, if they reply yes to those I say now imagine all four of those together, that gets you in the ball park of migraine. I'm on Ajovy since July this year and now I'm not constantly in pain or brain fogged its opened my eyes to how bad I was before, none of the preventatives worked, the botox did then it stopped working.
Pain/headache is #1 problem for me 😔 #2 is nausea/dizzy, #3 is irritability
Irritability is a big one for me too
1. The brain fog/confusion - I do really dumb things when I'm like that. The rest I feel I can deal with.
I hate feeling stupid and humiliated when I'm out of the haze and no longer brain fog Shae - Even if that's an overreaction on my part.
2. Allodynia - I get it bad up to 3 days in advance.
implications: clarity in sensation and proprioception, poor sleep quality, reliability
most severe symptoms: vertigo, intermittent blindness, LOC
most common severe symptoms: confusion/brain fog, pain (allodynia/cervicogenic headache/trigeminal hypersensitivity), vertigo
1) The PAIN, 2) The Mental assault.
I know there are people with much worse conditions than mine, but on a daily basis I literally beg God to knock me out, kill me or make it - the pain stop. I don't believe in suicide & I'm not depressed - I am pretty wicked off having to "live" like this - but I won't be the one to take me out. If I'm really lucky, I get 3-4 hours out of bed trying to catch up everything in the house that's fell behind. When I just stand there w/ a blank stare, begin circling like I've started a lone game of Ring Around the Roses,, &/or my speech becomes so slurred & my movements so spastic it looks like I'm partying like 1999...we all know what's happening. ALL HELL IS ABOUT TO BREAK LOOSE. I don't even go to the hospital anymore even though it's becoming extremely difficult for even me to tell it's not a stroke, just another complex migraine that's switched it's pattern. Sure, they MIGHT make the pain go away temporarily, but it always comes back w/ a vengeance within hours. The huge bill that comes with it a few weeks later doesn't help the pain a lot either. 🤷♀️ IF any tests are performed they are going to be normal. That really helps the pain too 🤦♀️
Everyone around me sees my mental capacity & communication skills have tanked. I bear no resemblance to the girl that was the High School Valedictorian, graduated college Summa Cum Laude & always got excellent employee reviews. Until the end when she got sick & couldn't remember how to do the job she had excelled at for years. It was horrifying & humiliating. Making a grocery list that should take a couple minutes at most takes me HOURS. That sounds stupid ik, but the pain is so intense i literally can't think & trying to makes the pain worse. Ive learned to stop fighting my body, let it rest & try later when it is better...even if its the next day, or the next. I used to drive all over the state for work. Today I can't even ride in a car for necessary trips such as taking my child to school or going to the grocery store. It makes the pain even worse & I've almost passed out several times when actually making it to where we need to go. At the very least I make a mad dash to the restroom "just in time."
I've stopped being around the very few friends & family that haven't ditched me by now. Between the vertigo, the aphasia, dysartria & dysphasia , I appear intoxicated even though I don't drink. It's beyond embarrassing to me & I know it is my family, especially my teenager. I know it's extremely difficult to carry on a conversation w/ me...I get frustrated listening to myself!!! So I've pretty much become a hermit. It's not like I can really go anywhere anyway.
I can relate to this so much and I'm so sorry your walking through this. Praying you find a provider who can actually help. They are out there. I get ,though,how hard to find them when there's not the cognitive strength to make a sandwich, some days.
Mine would be to have not to feel
1- not feeling sick and being sick 🤢 🤮
2- feeling dizzy ( just started having that symptom) 😵💫
3 - That day after hangover feeing 😔
Could you make a more in depth video about the cost of migraine / chronic illness ?
I'd love to help! What part interests you specifically? What's the question you have/dilemma I can help you solve with a "costs" video?
One of the worst parts of my Chronic Migraines w/Aura is when my head feels like a bowling ball 🎳 for days on end and I can't lift my head up the way I need or want.. 🙃
this feeling is AWFUL
I would change the diffulty with communication aspect. It really puts a strain on relationships and ive lost friends, good friends, because of misunderstandings and I'm just not the same person I used to be. It hurts to lose friends but I don't blame them. If I could get away from me sometimes....I definitely would. 😂
Nausea...please take the nausea away. I try to get a hold of the nausea first off so I can continue...life? Lol! I get the brain fog and wanting it gone top priority and I was torn between the two. In the end the nausea stops me fully and I can continue on with brain fog. TMI: I am a violent vomiter...I break blood vessels in my face and dry heave waaaaaay too much.
I have chronic muscle
e pain 24/7 upper body shoulders armpits are it feal like migraine but no headache have you heard of this.ive had conventional migraines years ago chronic and in my stomach mcas and pots in the past i have had to i have heds Asperger's mri tommoriw again😊
Pervasive self-doubt, no question.
Alcoholics call it a moment of clarity, I call it hell because for one moment in time I get it, everything and I realize who is the problem here and I have the energy and power I once maintained.. and then it is gone.
You got me crying again, 350 pounds of muscle crying like a baby, you got me good and thank you. You seem to know me better than I know myself.
I am not sure what i could change about my chronic migraine headaches because i more than just have. I also have other disability such as RA, HS, Chronic pain, chronic fatigue and i also have learned disability so i have a numbered of disability.
With so much going on, where would you start 💜
Ok so no magic wand here but lots of annoying migraine symptoms.
1. Fatigue
2. Numb anything : face, arms or hands.
3. Vertigo and dizziness
Is it weird that the numbness bothers me more than the pain?
I have a new neurologist that is working on finding me a better combination of medications, so I have hope things will improve soon.
Guess what! If you are "late" with a course launch...I will still be there later buying it. 😂❤❤❤ Ty for posting all this info...I don't have migranes like yours but I have been able to relate to everything in this video.❤❤❤
For me it's the brain fog. I cannot think during a migraine and its so frustrating
Second after that, im pretty sure my migraines have been causing me falling issues, and they are also very frustrating
Everything else, I can more or less deal with, but I need those two issues solved
Is there a video of how you dealt with csf leak while pregnant?
Not specifically. I think pregnancy was somewhat protective for my leak because I took it easy.
I did give birth naturally for both girls.
Worst implications:
1. Getting through work is torture
2. Losing/disconnecting from friends
3. Scared to do anything just in case migraine happens (low key agoraphobic
The fear of leaving the house 💀
My hemiplegic aura...all auras suck, but this type is the worst
It's so scary to go through and then a lot to process. I'm so sorry 😞
momming with migraine go do a myers cocktail and vitamin d and a bounus add in is gludathione iv injections you will feel amazing within a week max.
I have recently started having migrains, often with nausea and light sensitivity, while still having cluster and icepick headaches. I know cluster headaches are always on one side and can happen daily for days, weeks, or even months. I know icepick headaches usually happen in one temple at a time and feel like electric shock pulses that last a few seconds, and will repeat several times in the day. But I don't know what to expect with migrains.
Do migrains come in clusters as well? Is it typical to have them every day for nearly a week, then not again for several days, then every day for nearly another week? My dog has started alerting me early in the day, but the migraine usually hits in the early evening. Is it normal for them to happen around the same time each day? I am keeping a headache journal, but I still can't identify any triggers. I can be at home, in the car, or out shopping. My dog still alerts between 9 and noon and the headache hits between 5 and 7.
I am going to see a headache specialist about it, but until then I am just trying to figure out what to expect my new normal to be with migrains added to the mix.
You crack me up 😂😂😂
Do you have upper cervical instability?
C2 rotates 9 degrees 😮💨
I’d like to be able to stand and walk for “normal” periods of time and total hours during the day / and travel in small cars without risking my dysautonomia and/PPPD (dizzy all the time) triggering a multiple day migraine.
I’m down to 1-2 migraine days a month but I have to sit down at least every 2-4 blocks and never get in cars (SUVs vans are ok-ish). There’s not a seat every 2-4 blocks. Rollator not an option because of other stuff. It’s taking over a year to get my wheelchair.
2020 was chronic migraines … but I discovered migraine Jen so not all bad ❤.
#ZebraLife #EDS
if I had a magic wand, can I please just use it for all the symptoms lol
1) for me would actually be the postdrome phase, because I hate the fact that it ruins like 2 more days where I can't focus and sometimes still have a bit of head pain but can't take pain killers because I can only take so many per month. And the tiredness. But at the same time I feel like I really need to get back on track and do things somehow.
2) aura. Scary and happens in the worst places. Will say though, it's much better if my boyfriend happens to be there, because he knows what's happening even though I'm unable to communicate then, and he helps me stay calm and not panic. Learning to stay calm when I'm by myself too. Way worse than the postdrome but steals less time so that's nice.
I feel seen
I cannot believe how much you (we) go through, while pretending to be ok
@@MommingwithMigraine I only found your channel recently and it has been helping me so much, the feeling seen thing is so real.
One thing that helped me recently is just a mental shift from "I have to be okay", "I have to do things perfectly", to being like yeah you're struggling, of course you are, but being proud of myself for things I do manage to do (outside the aura and headache phase before meds hit, because no way I'm forcing myself to do things through that), even if they seem so small. Migraine me has gotten pretty good at advanced maths, and she's learning to code now, which doesn't even come naturally to normal me. I feel like I have to learn things from scratch, because migraine me cannot physically think around 5 corners in one go, so she needs other ways of doing things.
I have been having more good days after forgetting about their existence for a while, and it's been great for getting studying done and being able to spend more time resting when migraines do hit. And gave me the energy needed to work out again which does help with reducing migraine frequency, and just overall feeling better.
Im not sure what I'd change about my migraines, because its just normal now. 🤔
Will you still need Buddy if the patches go well?
Might not NEED him might still keep him more as a pet
@@lifestylebyk Im happy she's getting better, I want to get better too but it's not working so far.
That's a very good point, sometimes I forget that the things that are normal to us are not normal to other people! As for Buddy, he'll probably keep working, within the laws of course. With Migraine in my family (leak is, in a way, separate), I'd have to be in remission a while before I just started doing life alone again.
@@MommingwithMigraine that's fair. If I could remove one bothersome part of my migraines it'd probably be the pain and nausea making me faint
I would wish away:
Not being able to think clearly, not being able to read, not being able to socialise without being exhausted afterwards.
Actually: not being able to do normal life things.
Or maybe even worse: barely being able to, but not quite enough to not do it and having to struggle so much to do simple litlle things that wouldn't have cost any energy if you would feel better. And nobody being able to see how much you are struggling and not just being lazy.
Ahh yeah. The little things I was taking for granted all those years 😪
Next time for the intro, bounce around like a clown on a pogo stick.