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New, could use some success stories...

Hi everyone, I’ve recently been diagnosed with migranous vertigo and honestly i’m not having the best time right now… :frowning: hoping to hear some success stories because i’m struggling to cope at the moment.

I have been dizzy 24/7 since early February, I don’t really know what set it off, possible coming off birth control or a negative reaction to some antibiotics, or something else entirely. Regardless, it’s been a nightmare!

I had my ears checked at the doctors in late February and they said everything was fine, I was probably suffering the after effects of a cold or something, and to give it a couple of weeks, which I did, but by this point lockdown had begun so I was not allowed anymore physical appointments with my doctor.

Since then I have been in contact with my doctor every 2 weeks and tried a variety of different medications, the current one I’m on is venlafaxine. Has anyone had success with this? I was supposed to start at 75mg/day but just taking one 37.5mg tablet hit me like a ton of bricks, so i went down to 37.5mg (half a tablet twice a day) which was much more manageable but didn’t really have an effect.

Now I take half a tablet in the morning, and a full 37.5mg tablet in the evening. Suffering mostly from insomnia, have been doing this for four days now and still super dizzy. :frowning: does it get better? Does it actually work?

This is really getting me down…I can’t stop crying. I feel so frustrated too! I can’t train or exercise anymore and that was basically my life.

Please help if you can!
Thank you

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Hi, and welcome here. Sorry you are dealing with this, since it is really a difficult thing to go through.
I took venlafaxine for over a year, up to 150 mg. It helped tune down the dizziness, and other symptoms (double vision, things jumping, headaches). I am still mildly dizzy and when my period comes it gets a little crazier, but overall I am feeling 80% better than 2 years ago.
Venlafaxine gives you insomnia the first weeks, then it settles. I never took it at night. You should wait at least 4 weeks to see whether you feel a little better. It is difficult to hear this, but this type of migraine heals slowly, and meds need time to kick in. So measure your progress more on what things you are able to do rather on how you feel the dizzy sensations, because we tend to amplify them. Also, try to go for walks and move, the more you move the sooner you will habituate to the sensations and you will feel them less.
You will get better!
Laura

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I second what Laura said! I’m so sorry you are going through this, it is terrible and it’s hard to imagine right now but things will improve.

Running has been a huge part of my life for years and I was feeling pretty sad when my symptoms started messing with my physical abilities. I spent 4 months using an indoor bike and elliptical - not sure how your energy levels are but if your symptoms will allow use of machines, maybe something like that can be like an ‘exercise patch’ in the mean time. Once the gyms are open again :woman_facepalming: And like Laura said, walking is great as a tool.

The treatment I’m using right now (a diet) took 3 weeks of worse symptoms before I started having good results so hang in there with the meds, our brains are very sensitive and need time to adjust to stimuli, give yourself at least a month with any new protocol.

Hang in there and keep us updated. :dizzy:

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Thank you for your reply! It’s so reassuring to hear you feel 80% better…honestly my biggest fear is that I’ll feel like this forever. :slightly_frowning_face: my doctor did say it can take from 2 weeks to 3 months to feel any sort of effect of the venlafaxine and 3 months sounds so long…I guess it’s lucky that we’re in lockdown and I can’t really do the things I’d usually be doing but also I’m so worried that when things go back to normal I won’t be able to go in to work because of dizziness. :frowning: I’m a worrier!!

I’ve been going on a walk every day, sometimes I feel like I’m walking on air though. The worst was when I was prescribed propanalol, it made me so weak I almost passed out in a park lol!

Do you have any idea how your dizziness started? I find mine so random.

Momo x

Hi, thank you for replying!

Running is a massive part of my life too, I even bought a treadmill at the beginning of lockdown but all I’m able to do right now is walk on it. I try to go on daily walks too just for a bit of fresh air if anything else. I can feel my fitness levels dropping and it’s the worst!

Can I ask what diet you are doing? And how is your dizziness now?

Momo x

I’ve been following a strict keto diet for almost 4 weeks and have had about 5 good days in a row. Hormone changes and placebos being what they are, it feels too soon for me to say this is really working but I’m feeling relief and hope. I did 3 months of the low tyramine diet before this and had a good week at first so I’m trying not to bank too hard on it, but :crossed_fingers:. I have some appointments to talk about meds in the fall. My ENT said to try keto, my neurologist said not to :woman_shrugging: so I decided to just give it a shot. The first three weeks were terrible, the exhaustion was unreal, the dizzyness was worse, but now it feels worth it so far. If you’re thinking of trying something like this, I would start after your brain has had a little more time to adjust to the meds, don’t throw too much change at your brain all at once.

I was training for a marathon when my vertigo issues started last summer - episodic rotational vertigo for 2-4 days every 2-3 weeks, that became chronic vertigo, but thankfully not rotational, that stopped and I was just left dizzy daily and with blurry vision a few times a week. I have noticed that I’m more sensitive to fatigue now - if I sleep poorly I have more issues. Same with dehydration, I need to be really careful about drinking enough.

I’m running again but my body is pretty week, I lost a ton of fitness and keto has left me much physically weaker and with a racing heart (that’s finally calming down). But I feel like I’m going to be able to find a way to build back as long as I pay attention to not over-doing it physically.

It’s great that you have a treadmill at home, that’s the thing about fitness - it feels so crushing to lose it, but it’s something you can get back. And you already have a roadmap, you just might need to chart some new paths. Hang in there and be really kind to yourself, do the activities that support your mental and emotional health right now, in time you can focus on your fitness goals again. It’s a marathon, not a sprint (apologies if you are in fact a sprinter!) :stuck_out_tongue_winking_eye:

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Hey, yes, my neurologist told me a year to start feeling better, and sure it has taken a long time. But again, is not that one day you wake up like your old self, it is a slow progression, with bad days, but you bounce back from them easier. I read you think stopping contraception could have triggered it and forgot to mention that mine started right when my period came back after having my son, at 4 months postpartum. I could not breastfeed him directly because he never latched so I pumped like crazy but trained myself to only pump three times during the day and produce all the milk he needed, so I imagine all the hormonal craziness, and lack of sleep (my son would wake up every two hours to eat until we “trained” him to sleep), just got my brain into a crazy state.
Venlafaxine is first line in meds, so you are on the right path, and you can up to a high dose. Also, don’t freak out about weaning and withdrawal, I did it super slowly and I had close to no symptoms. You can read more on my diary of how I did it and why I did it later, but for now, concentrate on getting better.

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Often seems so but I doubt it is. With women hormones play a huge role so it could have been the change in contraception. For others it’s menstruation, post natal and consultants offices are full of menopausal and perimenopausal women. You say you are a worrier well an anxious personality and stress can be key factors. People who work long hours at computers are another group of regulars and, on here, I’ve lost count of the number of Personal Trainers and Keep Fitters who end up suffering with MAV. It seems evolution just isn’t keeping up with these life style changes. Obviously there has to exist some sort of (genetic?) Predisposition because by no means everybody in these groups develops MAV type symptoms and it’s unlikely many find a root cause because the medics just treat symptoms and don’t bother to look but I very much doubt it comes out of the blue. Still takes us by surprise though.

Hi, have a look at my diary by searching for ‘Lindsay’s Diary,’
It’s been quite a journey but I am better, not perfect but I’d say 98%. I’ve just spent 3 months working in a supermarket during lockdown! I’ve been on Venlafaxine for 11 months, it’s hard at first but bear with it and you should see results if it’s going to work in four to six weeks. Unfortunately recovery from this is never measured in days or weeks BUT it possible to get better. You have to keep going and try everything you can to find what’s going to work for you. Good luck!

Have a look at my diary “The Pizotifen Diaries”

Just spoke with Dr S yesterday and I am finally starting to come off meds after 3 years. First 3-6 months was awful but now I’ve virtually forgotten about it. Just coming off meds slowly to avoid relapse.

You can and will get better - but it does take time.

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To state the obvious, I hope you’ve look at #success-stories-positivity?

Hi there, I can’t comment on the medication but can totally empathise with the feelings you’re describing. I was hugely into yoga and PT, had to stop everything when I got ill over the Summer. Even walking was horrendously challenging both physically and emotionally. So hard when you’re used to being active and then to not be able to walk down your garden without help. But I’m 10 months on now and recently have been building up my PT again and am now doing yoga twice a week. It’s by no means anywhere near the level I was at before all this, but I just try to keep telling myself that anything I can do today is so much more than it was back in August when even getting out of bed was a battle. Very gentle yoga has been amazing at helping me progress, just the process of moving I think. And walking. Lots of walking! It’s frustrating but I’m finding that a lot of all this is about being kind to yourself and trying to not let the frustration get the better of you. I have limited success with this advice as some days are better than others!! I’m terrible at crossing bridges before I need to but it can be so hard to feel positive - especially on the bad days. I’m very hormonally triggered and some lovely people on here have given me some ideas to look into and think about so that might be worth looking into as you mentioned coming off the pill. Take care, one day at a time x