Just looking for some support today

Having a real rough go of it since all of this reared it’s ugly head again recently. I can barely make it though a day of work and it feels like I’m back at square one again, after 2 plus years of no meds, no restrictions and generally no symptoms. I’m due to get married in August and have some other things planned mid summer , and the fact that this condition has reared its ugly head again in the most important year of my life so far is disheartening. Knowing everything it took to overcome this the 1st time around, it’s really daunting to think about doing that all again. I guess I just need some encouragement today , thanks for listening

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Hey Chris

I know that feeling :flushed:

Sorry you are having a rough time of it lately, I guess what we have to remember with this condition is that it won’t ever really go away (or not at least for most of us) it’s always there in the background. Have you noticed that you’re more stressed lately? I know it’s a massive trigger for me. You’ll have to scale back somewhat and take it easy, I’ve heard of lots of Neuros state that this will come back around as it’s a condition to be managed, they can’t cure us unfortunately.

What I will say though is that if you need to go on meds for a while to get you through this rough patch then so be it. It won’t hurt you and we have to do what we have to do. Look at it this way, you’ve been well for so long and you will be well again. Don’t panic, try and rest as much as you can, do the diet, take rest, don’t overdue exercise… sure you’ll know the drill by now.

I hope that with this reply you’ll find some comfort.
We are here when it gets tough! You’ll do fine :slightly_smiling_face:

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I got married whilst dizzy! (Congratulations btw :tada: ). Sorry you are going through a rough patch. Know that it will get better. Focus on stress reduction! Don’t be daunted, know that you can do it again!

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Hi Chris,

Totally understand. I was fine until i wasn’t again. So disheartening.

If you managed to control it before I’m sure you can do it again. You’ll probably have to have medication for a while but then you can try without again.

Alex

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Stress reduction is so so difficult as you probably know. Some points in the day it’s better then others , but i know from the last go of this if you don’t treat the stress then not much is going to improve in general

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Walk in nature. Always helps!

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Planning a wedding is not an easy feat by any means. I remember this taking a lot of energy. Taking a bath with this swiss herbal concoction (Olbas) after dinner helps me relax and guarantees I take time for myself. Other than that, focusing on diet and vestibular exercise 3x/day has kept me focused.
Also be sure to advocate for yourself as much as you can at work. Hopefully they will understand that you need to scale back a bit.

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They are pretty understanding and so is my fiancé thank god. I’m back to the neurologist tomorrow, and then will set up vestibular and vision therapy again, seemed to help the last time all this happened. I’m a drummer as well by the way, although a little time off from that is probably warranted

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@Hammet89 I’m happy to hear that. I’m struggling a bit a work myself. I’m going to sound so ridiculous, but my current job involves quality control testing for a light and beat based boxing game, including rhythm authoring which involves lots of screen time with a flashing representation of what you box (to figure out what the music notes are doing). I love the musicality and fitness piece of my job. But today my doc told me " you could hardly pick a worse job for migraine than the one you are doing. Again, no permanent damage to you but the combination of screen time and flashing lights is practically guaranteed to trigger a migraine." My migraines are so chronic I guess i didnt really notice a difference, only sometimes when it was obviously triggering one in that moment. I’m hoping once my triggers lower i can get a better idea of how much this actually effects me.

And kick ass, I love that you’re a drummer too. Right now I’m having a really hard time trying to figure out why I am the way that I am and so sensory seeking. I had a migraine all weekend after band practice last friday, but we play lots of doom, metal and overall heavy music where I can’t not rock my body back and forth. I always get a sore neck and now i know to watch my triggers the following day or 2. But I will never give it up. I dont care, i love it too much. I started to think, i should just switch to guitar or bass, and just upsetting myself over it. I’m going to try to stay more stationary this week.

I actually read in in Victory over Vestibular Migraines that there are specific genes linked to different migraine conditions, and that migraineurs sensory systems are different. Is that why i love loud music, loud instruments and things that work against me? I’m feeling so frustrated with myself and everything around me.

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I don’t think I could possibly play anything right now. I went to my neurologist today , the 1st one I saw back when all of this started happening, and he’s convinced it’s pppd and prescribed me tradozone. Now I’m stuck in that what if it’s this and what if it’s recurrence of vestibular migraine? Was i misdiagnosed originally and it was PPPD all along resulting from my original vestibular insult? Is it both? I remember last time I spent some time in a mental health institution, and was given a combination of ami, buspar and gabapentin I think. After I got out it was still some months before I could use screens again, then I started to go out a bit and eventually got back to working. Was that the ami working on the migraine? Was it the other stuff working on the anxiety and that leans more towards pppd? I’ve been reading about pppd this morning, and all of this started a few weeks ago after a lot of lower head pain from a broken tooth with a cavity that had to get pulled. Before it got pulled I could feel the pain radiating into my right ear. The same day, I got some candy caught in my throat and got real anxious over it (not blocking my windpipe thankfully). Could this of set off the pppd, or brought VM out to rear it’s ugly head again. I know @turnitaround has evolved opinions on pppd from what I read.

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Hi Chris
I’m a new member to this club having started with my dizziness last August! So, I know how you feel and I can really sympathise with knowing plans are ahead but worried if you’ll cope or maybe enjoy them as much as you hoped to. It’s a weird condition and I hope these responses give you some love and encouragement if nothing else.
Alison

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Hi - I can really understand your frustration and anxiety. Try and hold on to the fact that you had a really good spell so the difficult time will end even if it feels it never will. I am very prone to ignoring this advice myself so know it’s not easy. I noticed my dizziness got much worse before our wedding. In the end I took 2 weeks off sick from work before the wedding due to stress. Also as I’m not one for the lime light we left everyone else to party and left at 6pm (we planned this). No one minded in the slightest. I just couldn’t handle it all. And actually it was nice to have some quiet time. I’m not suggesting you do the same but maybe try and build in some time for rests during the big day? I really notice when stress starts to grow and so does my dizziness. Is there anything that helps you relax? Mindfulness? Some gentle moment like walking? What helped when you were feeling less dizzy? Everyone’s different. I really feel for you and remember my anxieties. We had a truly lovely day though and I wish the same for you.

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I’m really sorry you are going through this again. I was successfully treated by meds for two years but when I came off them the VM came back again and it was so disheartening. However, 5 months later, my symptoms are really mild now, it’s eased on it’s own without any medication. I wasn’t expecting that to happen,and i still expect it to return in the future, but i can say that a flare up pf VM isn’t always as bad as it’s been in the past.

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That’s excellent @MissMigraine, hope you feel able to post in #success-stories-positivity soon?

I don’t want to jinx myself lol. And I honestly expect another flare up sometime in the future.

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I’m glad it’s eased a bit for ya @MissMigraine ! I’m starting on ami again tonight, crossing the fingers that it helps the damn visual vertigo, I can deal with everything else but that pretty well

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It really helped me with that.

I’ve read that it has and I think it helped me the last time but it like all of this was very slow. I had to take myself out of work today unfortunately, just couldn’t deal with all the lights and busyness of the hardware store

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Good to know as well. I’m sorry you’re struggling with work, maybe the ami will give you some relief. Thinking of trying this as well. I went clothes shopping with a friend last weekend and it was aweful. Not to mention it was a tiny thrift store, crazy anxious and gave me a migraine.