Vestibular Migraines? I don't know, but am desperate for help
Posted , 3 users are following.
I am going to describe this the best that I can. About 3 years ago, I was sitting at my work desk and was looking at the computer screen, I turn away from the screen, and my vision started to kind of spine, it was more like wavy back and forth as if I had "googly eyes". I couldn't get it to stop. I ran outside, tried to catch my breathe and it calmed a little but I haven't been the same since. It was a very stressful period in my life, and I also was not getting quality sleep for a long time. I did everything I could to get back to normal, saw a bunch of doctors, hard MRI scans, all came back normal. Since that day, I always have that rocky feeling as if you are on a boat. When I walk, its as if my legs are trailing behind me, and are always trying to catch up, as far as the sensation goes. If i walk on a slight incline or decline, its as of its a major incline or decline, i feel everything as if its happening as an extreme. I ended up leaving my job. Overtime it got better, and I have been good for the last 6-7 months. However, now again, after another stressful period and a brief period of none quality sleep. All the symptoms are back. It's hard to live like this, everything is a struggle. I am not sure what else to do at this point. After doing online research the online thing I can find that sounds like what I have is Vestibular Migraines, but it never goes away, its there all day everyday. I use to have a history of Migraines, got them all the time, but about 5-6 years ago they stopped, and I only get a few a year if that. They were ocular migraines from what I understand. If anyone can help me understand what this is, or if you have been through this. I am at a loss, and just want my life back. Thank you any questions please let me know I will be glad to answer them. If anyone knows how to treat this...
0 likes, 14 replies
jen78653 chief18
Posted
omg. this just happened to me two weeks ago. i was sitting at my desk a d had thirty seconds of vertigo. then got horrible headache, sensitive to light and ear pain lastinf four days. now im off balance, dizzy and legs and arms feel shaky. i staryed soing vestibular therapy exercises online. took Dramamine. hoping to feel better. it has to be hormones as this happened in day of my period. first period that only lasted one day.
i camt even get tests due to covid.
did it ger better each week?
chief18 jen78653
Posted
Thank you for taking the time to reply. For me it took about 2 years to go away, I had some good days, and some bad days. It was always present, and always felt something. I never got the vision issue again like I did that first time really, where things were spinning and it felt like I had googly eyes, but the sensitive to walking, and everything was with me ever since then. And now its back again. But it never completely went away until about 7 months ago. And now it came back again... I just want my life back you know? Sometimes its hard to even just sit somewhere and concentrate.
But I am trying to seek what this actually could be, and how to treat it and keep it away. I hope you start feeling better soon!
jen78653 chief18
Posted
I am so sorry that it happened to you and you still are dealing with it. I know mine is related to perimenopause and stress. I have been doing research and you can do vestibular therapy exercises to help (I have started and they do help as they make you do eye tracking exercises). They are free online like youtube.
This was my first one so it took my two weeks to figure what the hell was going on. I keep telling my husband that I fell like I just got off an amusement ride. Do you take any medicine? I looked up and there are some medicines mentioned but they come with side effects. Have you tried Bonine or Dramamine OTC? Do you know what your triggers are? Does it come with a headache? Mine came the next day and lasted for two days. One day I had to sit with a heating pad on my head in the dark as light made it worse.
I truly hope you feel better quick and it is not as long as a time period for you.
All the best
Jen
chief18 jen78653
Edited
Do you have a link to the exercise youtube videos you have been using that have been helping? I do not take any medication for it, I just started taking a magnesium supplement. I am not sure what my triggers are exactly, from what makes the most sense, stress and not getting quality sleep seems to be one of them. That was always consistent when this started and when the symptoms get worse. Its just strange that they never go away, well didn't for 2 years, then a 7 month break and now back. Thank you again for taking the time to respond, I have seen an ENT, primary, Neurologist, and a few other doctors, and they all said physically I am fine.
I just don't feel it, and want my life back.
jen78653 chief18
Edited
I understand. I want my life back too and it has only been two weeks. The ENT said it was a migraine, but didn't really sympathize with the dizzyness. Said keep doing exercises and over time should help.
I get very depressed about it as it came out of nowhere. I had a feeling it was related to my hormones as I have been suffering for the last few years with a ton of symptoms. On top of that, my mom is dying stage 4 of adrenal cancer and I can't see her due to lockdown. And as you mentioned, for the first time in my life I can't sleep.
So I guess the perfect storm.
I also take magnesium glycinate 200-300 mg a day for other issues but I read it could help. I also ordered aspirin last night as i read it can help end the migraine fast and or prevent other ones if you take low does daily. I will try anything.
Please keep me updated and I hope you get better.
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chief18 jen78653
Posted
When mine happened, and this all started, I was dealing with a lot of stress including my friend who had stage 4 cancer as well... I am so sorry to hear about your mother and your situation, that is very difficult. I hope and pray for the best.
It looks like the moderator removed the link to the youtube videos possibly. Due to it being an external link. Are you able to provide just the name of the exercises from the YouTube videos so i can look them up? They have been helping?
I also read that a vegan/vegetarian diet helps a ton with Migraines, if this is partially migraine related.
jen78653 chief18
Posted
It seems like stage 4 cancer is a stress trigger. 😦. I am so sorry.
The video is called Home Vestibular Exercises.
They have been helping. Could take a month to see better results.
I have been a vegetarian for 30 years. 😦.
If I find anything else that works or I am doing better I will let you know...please let me know too.
chief18 jen78653
Posted
I have also been a vegan/vegetarian for the last 15-20 years, and when they said this was the diet, I was like, great! Now what?
I will definitely post here as I find out more. Thank you for sharing the video name.
jen78653 chief18
Posted
You are welcome!
Please let me know if the exercises help. I have found if I move my head slower when turning or slower when just changing positions, I do much better as well. Quick turns and quick moves antagonize it.
Good luck!
jen78653 chief18
Posted
Hi,
I wanted to update you as today I am feeling much better....about 80 percent less dizzy. I tried the Epley manuever with my husband as my spotter. You can google it and find many videos online. I am not a doctor, but my mother sent me information regarding the manuever and said it worked for other people in our family who suffered from vertigo.
You can do the manuever one a day - preferably at night in case you get really dizzy. It helps move crystals back into your ear. I didn't even know there was such as thing. I don't know if it would work for your diagnosis, but I wanted to pass it along. You can even ask your doctor next time.
All the best,
Jen
chief18 jen78653
Posted
Thank you for sharing this about Epley. I just looked it up. I am going to try it today, I am going to slowly try everything until I can find out whats going on. I was a little better these last day or two, but today, not so much. I don't know what the change was... Hope to keep posting here as we figure out this journey. Thank you again!
jen78653 chief18
Posted
Good luck - I hope you return to feeling better soon. Will keep you updated.
Positive thoughts!
amy02086 chief18
Posted
Hi- i have vestibular migraine. I remember being in the dark and writing online looking for answers after going to the doctor offered no explanation other than "you must just have postpartum anxiety. I see that you are not sure if thats what you have as you have it all the time. That is how vestibular migraine often presents. It is always there and waxes and wanes in intensity. check out the dizzy cook Alicia's website. you will read all about this. there is also a facebook group called migraine strong. there are many people put there who have this. As my neurologist and ent have told me- your brain is stuck in a hyper excited state and needs to be calmed down with medication. I fought medication but ended up going on after diets and vitamins did not help.. I really did not buy the diagnosis as i had no head pain and come on a migraine that doesnt go away? i still have to explain that to people or even doctors sometimes. the only evidence that i can now use is that i responded to treatment for migraine. I kept trying a med and getting frustrated bc it wouldnt work fast enough. VM is stubborn and you have to give a preventative time and I am talking months not weeks although some people respond quickly. it will go away with patience and working closely with your doctor.
chief18 amy02086
Posted
Thank you so much for sharing all of this. I am going to look into it right now, including The Dizzy Cook. I hope with time this will all be gone and manageable. I just want normal life back.