What on Earth is Wrong With Me? | Silent Migraine / Vestibular Migraine | Sick of Reading
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- Опубліковано 25 чер 2024
- Hello Friends, today I thought I'd talk to you about chronic illness and chronic pain again, this time about one of my weirdest conditions, chronic migraine's without a headache. I get both painful and painless migraines, sometimes known as silent migraines, and I also get vertigo and presyncope, which is sometimes known as Vestibular Migraines. I know migraines are very common, but I think fewer people know about the experience aside from the pain and sensitivity to light, so if you have experience with this I wanted to let you know, you are not alone.
www.nhs.uk/conditions/migraine/
americanmigrainefoundation.or...
#migraineawarenessweek
ko-fi.com/roisinisreading
2 and 1/2 years of torture ..going to multiple doctors, hospital, and 8 million different rabbit holes of what might be wrong with me....this might not be the solution, but the way you were talking about it really makes me hopeful that I might have the answer. Thank you sooooo much for this video. ❤️
Thank you so much for this video. I’m trying to get all kinds of doctors to listen to me for a whole range of neurological symptoms since 2020.
The past week I thought I was going blind or get a stroke or something.
When an opthalmologist said I really needed to be thoroughly checked by a neurologist (again), I cried of relief that someone didn’t tell me I was healthy and should see a psycholosist.
On my second ER visit yesterday I begged for some kind of medication when they wanted to send me away to get iboprufen when the neurologist said it was probably migraine and while it doesn’t help with all my symptoms I do experience improvement with my extreme double vision. I thought I was losing either my sight or my mind.
I hope the neurologist will really help me this time in a couple of weeks. She’s supposed to be very good. I have hope again. Your story was so relatable!
Look of binocular vision disorder . Mirrors both migraine and Vestibular migraine Conditions .
At around age 30, I was diagnosed with silent migraines after other things were ruled out. My main symptoms were: extreme dizziness, fatigue, noise sensitivity, & a couple aura episodes. My cycle & weather were factors. Then for 20+ yrs it was subdued, but now I have chronic dull headache with whole body tingling & fatigue. The tingling is worst in the torso. In late 2018, (after thyroid cancer), a constant thoracic spinal pressure was determined to be several spinal hemangiomas, & the frequent tingling as well as that pressure is hard to ignore. It has affected my quality of life. Staying active helps, but it is tough. Sending love to those suffering with chronic conditions.❤️
This is nothing short of a blessing to watch. I'm sorry you have this, but it's a relief to know I'm not the only one with these silent migraines.
I’m really glad this has helped you feel not alone! I hope you are doing well x
I have been having silent migraine since 2006. Mine eventually turned into vestibular migraine, which I wouldnt wish on anyone !
Also wanted to add -- its SUPER COMMON for migraines to show/pick up around hormone changes in women!! If you had problems as a teen, then it can totally pop back up later when hormones change again (like perimenopause)! I had a few short bursts of vertigo when in my 20's, but nothing that ever made folks think migraine at all... now I'm 43 and have been hit HARD as my body is dropping hormone levels.
Thank you so much!
YESSS
this is perfectly described!
Thank you so much, I've been bounced around from doctor to doctor for going on 2 years and they still haven't figured this out.. I kind of discovered the concept of "silent migraines" on accident and this video describes it perfectly, I thought I was losing my mind.. now i have more confidence talking to my neurologist about all this... thank you so much!
I'm glad it's helped you!
Thank you very much for this. I had three episodes so far, I thought I was going insane. I'll visit the doctor tomorrow morning!
Thank you! 💕 You are not alone either!
💕💕
I am great-full for this video, you finally put into word what I go through.
I am so glad you found it helpful!
I love you. You really cleared a lot of things to me. You are my hero.
I'm glad I could help, I hope you find something to help
Hi Roisin, thanks for making the video. Today I had a silent migraine, aura only, no pain. Usually I would have a some type of ache. I woke up feeling cranky and my hearing was sensitive, I just felt spacey and not with it. I should have known it was an upcoming migraine. It always surprises me even though I've had migraines since I was 15. In my 40s now and I still can't get used to them. For me the worst is the impending doom and the panic attack it triggers in me. Even though I must of had over 100 migraines in my life I still cannot calm myself. The confusion is frightening. Your video has calmed me today as I feel I'm not alone. As you say it is a disability and can be embarrassing, particularly in the workplace when the confusion happens. Interestingly I used to think caffeine and chocolate caused my migraine, now I realise they help. Migraines are very complex. If I had to guess the root cause I would say the weather is a big factor. Perhaps something to do with the barometer pressure. Oh, also today I had arthritis in my left wrist so this is another reason why I think it weather related. Again, thank you for making the video. Stay well.
I'm sorry you had a bad day, but I'm glad my video could help. Thank you for taking the time to comment on this video, it is helpful to know we are both not alone in this
OMG!! SO I am not the only one in this world with this weird silent migraine. It started 2 months back and keeps coming randomly. I have vision problem and it scared me like anything. I see zigzag crown like shapes dancing in my vision all of a sudden or losing coordination between my eyes for about 30-45min then everything back to normal. It’s soo weird bcz if u look at my eyes when it’s happening, they look absolutely normal!!! Nobody can imagine what kinda torture this is! Hope we find cure for this soon🙏🙏🙏
Migraine can affect peripheral system causing balance problems, tinnitus, ear pressure/fullness etc
Thanks for making the video. So I seem to get this at night only. No pain but just a tense feeling in my head and I just can't think. Usually starts with a zombie like feeling and I guess like spaced out where you can't process reality. Kind of like you've just been stunned with a nearby exosion or something
This is so helpful, it's just me beening in stressful situation that triggers it like reading, it just keep reoccurring that I'm like this is definitely not an headache so what is it then. Many people just don't get it
Thank you for making this video. I get Vestibular migraines too !!
I'm glad you found it helpful!
Thank you for this 💙 i think i‘m struggling too with migranes but can‘t pin down what the triggers include apart from weather change and hot temp as well i also have other health issues which sometimes makes me believe that there must be something else bc migranes shouldn‘t last that long or happen this often … whatever it‘s nice to know that you‘re not the only one having to find out how to live comfortabely, hope youre doing well :)
How often are you getting auras now? Have you found out triggers and what are you doing to avoid the auras
Thank you!💟
You are so welcome
Thank you!
I'm glad you found it helpful!
This sound's like what i have but i cannot figure out the triggers and it can be different every time, ive been suffering from one the last few days because i have the aura ones to start with then they progress to the headache 😢 so i appreciate this video so much thank you for making it ❤
Ty ☮️
Amazing iv been suffering from this for over a decade and only recently started looking into migraine and it feels like it fits
So glad I came across this video. I do get painful migraines following aura occasionally (had one yesterday and feeling like a swamp snail today 🤪), but most often I get them without the aura and they’re generally triggered by dehydration I think. BUT, I never knew about migraine without the pain and after watching your video I think maybe I finally have an explanation for what I’ve been experiencing for the past 7 months. Sudden inexplicable feeling of doom, brain fog, heightened sensitivity to touch and sound, low mood, low appetite. I’ve gone to a couple doctors and they basically offered anxiety meds or tips for managing anxiety. Could it have been migraine all along? Now, I’m thinking that could very well be the case! Still not sure what to do about it but at least I feel like I’m not losing my mind now!
Swamp snail is the perfect description! Glad this could be of help
Same here
Yes, I get these and the worst part is the the way I feel before I get the pain and the wiped out feeling afterwards. The pain isn't usually the worst part. I recently started taking Topirimate.
I'm on my second week of topiramate. How is it going for you so far?
This...yes this!
Great video. Really well explained. I luve with migraine and it is very difficult to explain. Awesome.
Thank you, I'm sorry you have to live with migraines too
@@RoisinsReading I live in Queensland Australia, so what you were saying about humidity and heat is very poignant. I really struggle for 6 months of the year. I hide during daylight hours as much as possible. The sun is vicious. But, I cannot change where I live so I have to adapt.
I sent your video to my fiance because you have said it all so eloquently yet simply, and not too long. Thank you so much.
He is very kind, but there are days that l am just out. In bed, slurring, hiding in my dark, heavy world away from light, sound and smell. I want to explain that during those hours and hours I am concentrating so hard on just my breath so as not to feel any of the pain or the spinning or the nausea or the general ill. Just very very ill. And, to hold on to the thought that it always ends.
Take care xx
@@lixy7199 please try n do something like dancing/cutting veggies etc something which will take away your concentration from the symptoms. I have silent migraine and the episodes vary from 15min to 1 hr. I keep trying to ignore the symptoms and they go away on their own. This is so weird to explain to anyone cz I have to say- I am seeing zigzag motions and can’t focus on one point (though I’m not blind)! May some cure be found for this disease 🙏
I can relate! I've been having migraines since pre-teen age. The 1st couple times I experienced seizure like confusion and visual auras, with noise and light sensitivities. It frightened me so much, as I didn't know what was happening! Throughout my teen to adult life I'd get debilitating migraines, almost always associated with my menstrual cycle. I was also on birth control, and had polycystic ovarian syndrome. I became anemic (from heavy periods) and would frequently pass out, specifically with sudden changes in temperature. (Like going out into heat, after being in an air conditioned building). Later in my 30s, I had migraines which caused intense pain and confusion with vomiting. I once had a migraine so bad, that it lasted 5 days. I was eventually taken to emergency, where they did a spinal tap. I avoid aged cheese, wine and other alcohol, MSG, and cured meats. Most recently my migraines have been awful feeling in my arms. I feel cold and the veins in my arms feel like they have bubbles in them. It's so bizarre feeling. I have a headache and will vomit several times. I also am now getting the frightening classic visual auras. I've had EEGs with "normal" results. I have arthritis, neck pain, asthma and GERD and other digestive issues, as well. Some triggers also include being around chemical smells, like exhaust fumes, smoke and paints, glues etc. It's frustrating when others don't understand or think you're exaggerating, like you're crazy, or it's just a headache!
Pls get medicine bc migraine damages the brain causing white matter legions /hyperintensities. Many names for it but small vessel eschmia is umbrella term that means vessels deep in brain are damaged by migraines (or cholesterol or high bp or diabetes). Look up Dr Michael Teixido - he’s great
I can’t totally relate. Thank you for sharing
saaaame here so much fun
For 10 years, I have been diagnosed with multiple things. I kept telling every single doctor to please look at all my symptoms as a whole. Now, as of this post, I am still waiting for my EEG results. But I had an episode during that, so hopefully I end up with the correct diagnosis. But I started with auras and just blacking out full-on smack than boom wake up fine. To then, having separate occasions of mini stroke symptoms. Then they combined. After that, for the last 5 years, it morphed to full motor parrallisis on both sides of the body, no speech, body temperature plummeting down, blood sugar drops out, and blood pressure climbing high. I suffer from brain fog also. My back muscles draw up painfully. I can be in this state with all above symptoms at once for 6 8 hours at a time. After I have what I call neuro exhaustion. I have no strength and can barely get around sometimes for hours after or weeks after. Now my current diagnosis is complex migraines.
Get an mri you could be losing blood to the brain. Mini strokes. Migraines are associated w strokes (they damage small blood vessels) and dementia
4 days in on my silent migraine. Spaced out. Waves of feeling awful, very very distant nausea, fog fog fog vision and stability. It really is debilitating.
This has been happening to my fiancé. We have been waiting for months for him to get in to a neurologist. I hope he can find some answers.
tx
Yw
I've been diagnosed with silent migraine, I'm scared. They hit randomly my face, arm and leg feel strange. I feel dread before it hits .
What do you take to alíviate the symptoms?
Did any treatment work for you?
Such a bad feeling when you are suddenly slurring words or stop talking and things become confusing😣 been dealing with this for almost a year. Celery juice has been keeping me afloat🥬
It is rough, I'm glad you found something to work for you
@@RoisinsReading the most traumatic thing I’ve ever experienced. Do you still get the derealization? I had it for 7 months with no break. I had a point recently where I was about 3 weeks no symptoms but I am having a relapse today (why I found your video) I broke my celery juice routine a bit so I am feeling “dreamy” today. 😕
@@Jesussaves532 yeah I do get that, I feel very spaced out and like all my joints are about to float apart. I haven't had it for that long continuously though, have you been to a Dr?
I get migraines where I cannot see. There is literally a black spot that gets larger and larger and takes up my entire field of vision and then dwindles into a colorful aura. I cannot talk and sometimes get numbness. I’m usually wiped out for the day. I’ve been getting them with pain since I was 12 but when I got older no headache - just the aura. Luckily they seem to be coming less frequently (last one I had was short and a year and a half ago) so it seems impending menopause may end them. Thankfully
How are you now? How old are you if you don’t mind sharing?
@@vee9133 I’m good. I get them infrequently but I dread them. I’m 49, been getting them since age 11
@@karasimon6766 you would say that aging has helped improve them then? I started getting the migraine with visual disturbances six or seven years ago. They are infrequent now but scary. I also now have vertigo most days for the past four years. Wondering if it will improve as I get older. I am 37.
@@vee9133yes I feel that aging has helped me, especially because I believe they may be hormone related. The onset was about puberty or a little before, they were bad and then gradually got better
Migraines do regress later in life, but for some women, the migraines with pain stops and is replaced by dizzy, migraines, a.k.a. vestibular, migraines around perimenopause and menopause because of the hormonal changes
Hello, hope you are doing much better. If you are also experiencing other symptoms alone with stomach problems, it would be good to have a blood test to check for celiac disease. Many people who experience many symptoms usually the primary cause it is something else. You can ask you doctor to check for celiac with a blood test.
Thank you for your concern. You are right these are common symptoms for celiac but I have already tested negative for that!
@@RoisinsReading Thank you for your video, it helps a lot of people like me suffering from vestibular migraine. I hope I can find the right treatment for me. I was trying to leave another comment, but I am not sure if it was posted. Anyway, if you only took the blood test there is still a possibility that it could be wrong, many people have tested negative with blood test and they tested positive with the endoscopy which is the confirmatory test for celiac. I just wanted to pass the information in case it is of any help. It may not even be your case, but a have heard many people getting negative blood test for celiac and turned out they were positive. Thank you again for your video and have a blessed day. I subscribed to your channel.
@@Jenny20824 I have had an endoscopy too but thank you for watching and I'm glad you found the video helpful!
@@RoisinsReading I am glad you ruled that out.
Have been diagnosed with acephalgic migraine after 3 years. Nightmare isn't it! Do you get tinnitus and general weak feeling? I had a couple of turns where I felt very cold and had the shakes but assumed they were panic attacks.
Same here.. tinnitus. Pulsatile tinnitus , dizziness ,chest pain . How you doing now ?
@@saturninocantillon7548 no better. I'm on nortriptyline but it's not working
Try calcium and or sodium blockers , serotonin, etc . See dr Michael Teixido
I have heart palpitations
I get nausea and cold sweats. Sounds gets really loud light, intense. It's triggered by light. I left it on all night. No triptans work if a headache hits. My weight has been affected as I can't eat easily. I'm autistic. Beyond frustrated. Believe 2 conditions could be ruled out I think the eeg needs to be done when I'm having the attack as my senses feel completely scrambled and fmri would show My blood vessels don't tighten which is why triptans don't work an fmri would prove that false my aura phase is way too long ive the nausea and sight probably for days . It looks like flicker vertigo. Its horrible. I Dropped to 5 stone at one point over the appetite loss. I'm trying to retrain my eyes not to hate light. I'm losing hope at this stage. It was a stupid attitude that led to me not getting a diagnosis in the first place I could even trigger the thing. Leave my light on all night it happens. Sometimes I wake up like this though but never heard of a condition like it.
Have you been checked for binocular vision disorder?
Have you had a mri sounds like chiari malformation
Try Earthing! Sounds silly but once you understand it / try it (free) you will see.
Some smells trigger mine😒
Me too….. shoe polish and rubber are my worst. When the shops start selling wellington boots!!! Ugh. And slippers. Double ugh.