It’s been a very long time since I have posted on here, but I do keep in touch with Scott now again for a bit of a giggle about all this crap.
Amazing to think my MAV journey started 8 years ago, Aug 5th 2005 to be exact.
I’ve been relatively stable the last 3 years since taking Citalopram and Pizotifen, but I dropped the Piz at the start of 2010 and have been going alone on Citalopram due to weight gain.
I’m never been symptom free, but it’s been very manageable. The last 4/5 months have been tough though, with symptoms getting more intense (all the usual stuff). It’s been getting me down a lot, as it brings back bad memories. As I’m sure many old timers would agree, amazingly we still all push on. I have a solid job and I even give presentations to 200 people when I’m rocking and my vision is vibrating as I look into the audience. Nobody has a clue, not even the majority of my colleagues about how testing that can be with all this junk going on. Even though I can feel like death, work gives me a focus not to dwell.
I’m seeing my neuro-otologist Dr Davies very soon for an evaluation. It’s been a few years and I think I’m going to give Nori a shot. Pizotifen has been an agent that has seemingly worked, but the weight gain is savage and it’s not a long term solution. It’s time to get back on the meds testing bandwagon. My objective will be simple: better management of symptoms. I’m looking for a 90% sweet spot. Boom.
In the early days, I always looked for stories of hope and I see there are a lot of new people on here as diagnoses become more common. All I can say is you will get better in some form. I’ve made many mistakes on my journey from taking quack potions for MAV to searching too many other avenues in desperation. I tried it all. Learn from this site, get a good plan together. Acceptance of the “new you” is the hardest thing as is calming down the nerves and worries. We all understand though, it’s life changing.
And you know what? I might feel like I’m rocking, feel nauseous, hungover, have “off” vision but I’m doing what makes me feel best. Being in motion. So I’m riding a motorbike from London to Geneva next week, however I feel.
Hey there man… great post and thanks for sharing. Good luck on your trip to Geneva… if you end up travelling in Switzerland and come to my neck of the woods (Zurich) be sure to say hi!
your comment about presentations and feeling like you are rocking, moving etc… is so similar to me… what a crazy world we are living in haha
Great to hear from you again, and that you had been doing so well. Oddly enough, your post about the citalopram coincides with an email I just received from my friend who has been doing exceptionally well on a very low amount of the stuff for around 3 years now and is, like you, getting some of the old familiar crap symptoms back. Now she is wondering if the citalopram is not working anymore, she said she was going to ask her GP about upping the small amount shes been taking.
Hey Luke – love your attitude. Always driving ahead no matter what.
You mentioned to me exercise earlier, that you had ramped it up and it correlates with you feeling worse. Could be it. Maybe reduce the intensity of exercise a bit and see if you get back to baseline again without a meds intervention? It may be unrelated of course.
Great to hear from you - I’ve been wondering how you’ve been getting on. Terrific news on your up coming bike trip, I’m sure it will be an absolute blast. Really happy also to read that you have been doing well (up until recently anyway) and I’m sorry things have started heading south. I’m sure you’ll have success with some new meds (if nothing else we do have dozens to choose from).
I can empathise with giving presentations. I do that for work too, including running one day workshops (which is pretty full on). If it’s a smaller group I just sit down when I’m delivering the training (so much easier for balance) but if I have to stand I hope for a lectern to grip on to - it helps!
What % were you on the Piz and Celexa together? What % were you on Celexa alone (before things started getting worse)? How much weight did the Piz make you gain? Good luck with your med trials, Nori sounds like a great one to start with!
Thanks everyone for your kind words, and good (and bad) to see some familiar faces!
Scott - I’m unsure about the exercise element (I do feel more off balance and dizzy after, but also quite ‘fresh’ if that makes sense?). I’m going to keep look at the patterns and see what correlates.
Sarah - Yes I did turn into a balloon on Piz, but first time round I’m convinced it sorted me out. Its just a bitch about the weight. I’d came off it as was feeling better, and went with Cip alone since start of 2011. I hope that helps.
The dizzy rider is back. I just clocked 1,800 miles to Switzerland and back in some pretty bad weather, also with a bit of a head cold.
I always feel better in motion, so riding the bike was fine. I did feel pretty off balance with some nasty rocking motion when I got off which made me feel pretty bad, but as usual I smiled and try to push on through. Visual dizziness was also increased, although I have this as standard. I can’t remember the last time I actively focussed on an object and it didn’t shimmer!
I’ve also started to question whether I have Mal De Debarquement hence why symptoms can be so up and down. Probably is migraine though.
There you go folks, you can do some epic stuff if you put your mind to it.
Dizzy Rascal: Congratulations on a good trip! I was going to say that feeling better when riding in car (or I guess motorbike!), train, plane, is one criteria of mal de debarquement. From what I’ve read, it seems as if some regard it as something different to VM while others view it as a form of migraine? Thanks for showing us migrainuers can still go about life in a big way!
