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Diana's MAV diary

Hi @flutters …doing better compared to when all this started for sure …if I had to put it into numbers I’d say I’m at 50% which is good compared to how miserable and panicked I was feeling before Effexor! People are starting to notice the difference, even those that check on me on the phone say I sound different.

I’m still swaying but it isn’t as violent and even on the days when I feel like I went back to ground 0 it doesn’t last as long, I’m still taking meclizine maybe once or twice a day depending, some other days just don’t take it at all but for now I think Effexor and meclizine are my heaven sent combo. Hoping one day I can stop it but for now I’m enjoying this improvement. I’ve been taking the pill in the morning and my sleep has improved tremendously…most days I need little naps after 1-2pm because the exhaustion gets too much but I have the freedom to do so (even in the car while I’m in line for school pick ups lol) & then at night the latest I’ll last is 10pm

Thank you for checking in …how are you doing?

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What can I say? Life isn’t great but I don’t think it is as bad as when all this started and I thought I was dying.

Still at 75mg of Effexor XR and 1-2 meclizine most days …having some ok days and then hitting the ground hard AF but what’s new? We all know this is how we roll (or sway or spin) with this condition.

I started noticing the gain weight pretty quick after I upped my dosage to 75mg so I started the keto diet full force and already lost 7 pounds so not bad although the first 2 days were miserable, I can see it works for the weight, I’m anxiously waiting to see what it’s going to do for my MAV

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Keto helps me as a boost when I’m doing badly but am medicated. Before I went chronic keto held MAV at bay by itself. It’s a tool in our kit.

Good on you with the weight loss. Lately I can get that initial water weight down but no farther. Your body needs more water to process a glucose metabolism - usually 4-7 pounds. It releases it when it’s not needed with keto.

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Yeah that’s what I thought. 7 pound is really good for not even a whole week but I think the actual results (not just water weight) will come after

My best run was about 25 pounds. Effexor gave them all back plus 5. You’re doing well to maintain ketosis. I couldn’t keep either ketones or glucose in a decent range while on any of the psychotropics.

I considered writing an “almost” success story but decided to update here instead. I want to give it more time to make sure but I’m delighted to say that I’m definitely better!!!

I did keto for 6 weeks and definitely felt a more
Clear mind, thanksgiving came and with the in laws
In town for a week I decided to stop the diet and put everything to the test, I needed to make sure if it was just the Effexor or a mix of med and diet …you won’t believe the things I was able to do that week. We did malls, the beach, we did a SPINNING FLOOR top roof restaurant (the floor slowly rotates so you get a 360° view of the beach, even the people without vestibular disorders can feel weird while and after the visit) and to top it all we did the Orlando icon park wheel (like the London eye,
Less big) …all this and symptoms stayed pretty low, the one thing I didn’t dare was alcohol but I can tell you I still had the best time I’ve had in months.

In laws left and it was time to start packing because move time came sooner than expected! Same neighborhood just a bigger place but still a ton of crap to pack and move. Did the whole thing with just my husband (movers only were hired to move the two couches and a heavy ass table that can’t be disassembled), Lots of little trips, pulling furniture apart and then back together and then organizing the new place and guess what? Symptoms stayed very low once again. (Except the week before my period but that’s another story)

We’ve been in the new place for a week and are
Finally settled, I’m starting to feel more brain fog again and I think it’s maybe because of stopping keto, oh and gained all the weight back already but oh well …I think I’ll go back on it right after Xmas dinner lol.

Today I went to a field trip with my younger daughter to a petting farm, lots of walking and a bumpy hayride, felt the floor like marshmallow after the ride but it went away pretty quick. And then because all that wasn’t enough challenge to my vestibular system I took my daughters on a last minute
Movie date to finally watch frozen 2 …first time back to the movies in a year and managed just fine.

Don’t get me wrong, I’m still feeling the swaying and the headaches but they are definitely not as bad as before. If I have to put a percentage on it I would say I’m back at 70-80% …and even on my bad days I Manage to deal with them without panicking like before. It’s during those days that I think about all of you and your amazing advice and how so often you guys told me it would get better.

I’ll keep updating wether it keeps getting better or worse and I’ll be forever thankful for this site :heart:

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Well done. Wishing you more healing to come.

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I’m so very happy for you!! Well done. :heart:

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That, and the Effexor, is probably what has contributed most to your success. Very well done.

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I got to the point of rolling my eyes instead :roll_eyes: :slightly_smiling_face:

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Well… I gotta admit that I choked up a little reading your update! :kissing_heart: I remember so well when you came to the site and were in the same scared, hopeless place that we all have been in.
I’m so thrilled to see you enjoying your girls, husband and family again without debilitating fear. :purple_heart: Well done Diana!

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3 posts were split to a new topic: Help, I’ve got Oscillopsia

Isn’t it funny how sometimes when you suffer from a chronic condition you seem to jinx yourself every fine you say out loud that you are feeling better? Or is it just me that this happens to?

This week was hard, all bad days but today I feel like I’m back to square one, just as dizzy and depersonalized as when all this started. The only difference is that this time I’m taking it calmer since I’m not new to it anymore. This whole week I’ve been trying to not let the panic creep back in and I think I’ve succeeded but today has been hard to not to …my biggest fear is that Effexor stopped working, I’ll give it another week to see if this relapse calms down if not I’ll go up in dosage and see what happens :cry::cry::cry::cry:

This goes to show how unpredictable this condition can be. A week ago I almost posted a successful story and today I feel like crap again.

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Right there with you love. Had a bunch of good days in a row then yesterday crashed.

Here’s the thing. We always have MAV but we don’t have to fear it. We already know how to weather this storm. Hearing the way you talk about it today vs when we first met? That reads like a success story to me. :slight_smile:

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Really sorry you’re feeling so dizzy again.
Effexor hasn’t stopped working, but it didn’t stop a migraine attack that caused your symptoms to ramp up; so it might be you’re not on the right dose yet.

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Agree with Lucy entirely. In UK it seems, amongst the consultants that use Effexor, 150mg seems to be the target dose and even then with intractable cases it seems many end up adding in a second drug before they get good control. Obviously it’s better in increase in stages because some people do reach a therapeutic dose sooner and nobody wants to take more than necessary so it takes time.

Hey my love

I’m so glad you got to experience some good days! Hang in there… this rough patch won’t last and I’m positive the good days will come again :pray:

I hope you have a lovely Christmas :smiling_face_with_three_hearts::crossed_fingers:

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Hi everybody! Hope you are all having some great or at least some how decent days! :smiling_face_with_three_hearts:

There’s no much to update about me, I made a post not that long ago about joint pain and that has been up and down, going in tomorrow for my yearly physical and I’ll ask my dr to please test for everything possible so I can know if it’s the Effexor causing this or something else.

Weight gain is starting to get a little worrisome but I can’t lie, I haven’t been watching what I’m eating so maybe if I put some effort into it It wouldn’t be as bad but I’m a foodie and I always tell myself that “I’ll start tomorrow” but one thing I know for sure is that Effexor affects my already big appetite.

Symptoms wise I’m doing ok, some great days, some bad ones and a lot of in between but I definitely bounce back way easier and faster now.
My mental health is in a better place thank the Lord and on those bad days I don’t feel as mentally weak as I was in the beginning, I now get what you all meant by “it gets easier”.

And although this is a more person life type of thing I figure I would tell you because there’s strong smells involved …I’ve always been a person to lack passion for anything “professional”. I didn’t go to college because nothing called my name and I didn’t want to waste money. I always felt like I was just meant to be a house wife/stay at home and funny enough I was lucky to find a man that didn’t have a problem with that but then at times I felt like my life was lacking something, tried to engaged in some hobbies and besides doing great makeup on myself I never felt a desire to something else …until a few months ago, I’ve been getting long acrylic nails for a long time, I love the concept and about 6 months ago I found a new nail tech that does amazing work, she’s inspired me and something lit inside of me …she’s become a good friend and her selfless heart decided to give me some classes when she saw my interest! It turned out I’m really good at it and she even said she’s now scared because I’ll be big competition :joy::joy::joy:.

I’ve been practicing, I bought all the supplies, I’m so excited about this and definitely see myself creating amazing nail art in the future, I was at first scared because of the strong smell of monomer but so far I haven’t found it to be a trigger. My husband says he’s never seen this spark in me and says he fully supports me as long as I don’t put too much stress on me and that if ever feel this is affecting my MAV or health in general I’ll stop …for now the plan is to practice for a few months and then Start trying to make a small clientele with always keeping in mind to not overdo it.

We’ll see what happens but that’s my update for now :). I’ll keep you posted

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That’s fabulous! I’m so proud of you. You’re an overcomer. I hope it goes great! :heart:

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The number of hobbies VM has made me pick up, I can count with one hand. I listen to podcasts and go for long walks. Some hobbies are more indulgent and involve spending money to feel better. All is good, as long as the mind is occupied and healthy !

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