I’ve been considering posting a success story on here for a while.
I’m not 100% over this, and I’m still on meds, but I’ve made so much progress and been consistently in the 80%+ range for a few months now, so I think I can call that a qualified success for now. I know when I was at my worst I would have sawn off my right arm to feel this ok!
So, in brief:
Early 2017 dizzy spells that quickly passed
spring 2017 severe dizziness and very unpleasant head pains, all manner of strange neurological symptoms 24/7
Summer 2017 saw Dr S for diagnosis of Migraine Variant Balance Disorder. Started Pizotifen with positive effects within a week or so
Winter 2017/18 progress stalled at about 50/60% better. Dr S put me on Gabapentin in addition to Pizotifen. Meanwhile I changed to a much less stressful lifestyle
Summer 2018 - started feeling much better as symptoms very slowly faded
winter 2018/19 - feel almost normal most of the time and bad days are not very bad. Travel and sports and working at computer screen all are very doable now. Averaging 80-90% most days. I’m even going snowboarding tomorrow!
I have not yet put myself in extended stressful situations (such as very stressful work) and I’m still on meds as above, but I think this should be a message of hope for people who are at a low point.
I know I personally clung onto the success stories in my very dark days. I hope this will help others improve and get better!
Good luck everybody.
MAV is not much fun but it is definitely recoverable!
PS I should add that even on bad days now I don’t have any actual dizziness, it’s more like a weird fuzzy tired heavy head. So the dizziness is almost completely gone, fingers crossed!
Thank you for coming back to post your story! So encouraging. I’m in the midst of MAV so am clinging on to all the success stories.
What kind of dizziness did you have ? Mine is like unsteadiness, rocking on a boat. I’m desperate to get rid of it!
Thank you for sharing this positivity! So happy for you! I am on my way to where you are and feel hopeful and looking forward instead on back. Snowboarding! That’s incredible!!! So pleased for you!!! Long may it continue!!!
Yep! And actually I didn’t realise how stressed I was until I gave up the high-pressure job…
I began to feel human again
I thought I’d post a success story to cheer people up and bring hope to those who are struggling. I wouldn’t say I am completely out of the woods yet, but I’ve had just about two months with ZERO SYMPTOMS
If you follow my thread The Pizotifen Diaries you’ll see the history. Very briefly, I was hit by the MAV bus in 2017, lost my job, life was hell, didn’t know what the heck was wrong with me. After many wrong diagnoses, I saw Dr S summer 2017 and began a slow, hard process of recovery, with diet, lifestyle, amtryptiline (couldn’t tolerate) then Pizotifen then plus Gabapentin and in 2018 was doing ok at about 80% better. Around Easter this year had to stop Gabapentin and started Candesartan with still Pizotifen. Also quite strict Keto diet. Since about 2 weeks after starting candesartan & keto & Pizotifen combo, the symptoms just disappeared. Yay. Amazing.
I am still on meds so wouldn’t consider myself ‘cured’ or even fully in remission but I am symptom-free at the moment and that is amazing.
I remember reading these success stories two years ago and just praying there was a way to get better. At the time it seemed impossible. Well, you can get better. Have faith. Give it time. Be patient. And keep trying different meds/lifestyle/diet options until you find what works for you.
Dr S says he’s never left anybody on meds indefinitely, so I’m hopeful at some point I may be able to come off the meds and still be symptom free. That is the dream…!
You are doing better than I was!
2 months without symptoms, amazing!
I still had symptoms at the point I dropped the meds, but continued to recover without the medication.
I still get tinnitus all the time, so you are doing better than me! Fantastic!
Keep it up!
No doubt outside the scope of this thread but I cannot help but wonder how much influence the possible cause of the MAV influences the stages of regaining control. Must do surely. I’ve had a couple or three spaced, individual one-week periods totally free of symptoms and it’s reassuring to know ‘underneath’ isn’t actually broken. It can still work 100% but mine doesn’t seem able to sustain it longer than that so far. Helen
This is so amazing to hear!!! I have a question: what spurred the keto diet? Do you think it’s a significant component to your recovery?
I tried to do it while on gabaP but it made me feel very odd. So was keen to start as soon as off gabaP
Yes, we’ll get there in the end…
Congrats! Enjoy life !
Goes to show how one can get life back with the right drugs. Trials aided by good Dr goes a long way.
This is great - and very encouraging for everyone. I think Dr S is excellent - I am so glad I found my way to to him last year! I am sure you will be able to come of the meds at some stage!
A massive congrats on getting to symptom free - a remarkable state to be in to which we all aspire. Your post gives hope to the rest of us that this can be achieved. I am doing well on Effexor 125mg but am not so well that I can say I feel like “it never happened”. I recently changed neuro and she is determined to get “full symptom control”, in her opinion anything less than that is just limping along. She is talking about adding in another med, possibly beta progane betablocker if I am not fixed by the time I get to 150mg Effexor. I tried Candesartan 6mg and 8mg before but it dipped my BP too low - can I ask what dose you are on as it would be interesting to hear how little/much was required to get you symptom free.
I thought I’d check in and give a little update.
I am still symptom-free nearly all the time
On 6mg Candesartan and 2.5mg Pizotifen daily. I’ve been having some side effects from Candasartan (nearly blacking out occasionally when going from bent over like tying shoelaces to standing up rapidly) but these are tolerable as not too frequent.
Still on Keto diet.
A handful of mini-migraine auras lasting not more than an hour each over the last few months, notably when I stopped candesartan for a few days. But that’s all! Amazing!
I’m not ready to come off the meds yet, although I really want to, I’m going to wait until Dr S says the time is right.
Overall, I just feel pretty normal nearly all the time.
I hope this gives you some encouragement if you are out there feeling as sh*t as I was 2 years ago…
Good luck everybody. Persevere, keep trying different meds to find what’s right for you. And cut the stress as much as you possibly can.
That’s fantastic! I just dropped my workload by about 65%. YOU have been on my mind for several months. I find myself thinking, @gidlabu did it. So can I. Thanks for the much needed encouragement, even when you’re not around and don’t know you’re doing it.
I went up from 4mg candesartan to 6mg daily (plus my usual 2.5mg Pizotifen) and I have had pretty close to zero symptoms in the last month.
Also still on low carb/keto diet.
I have been working a lot, doing a lot of screentime and driving long distances - all seem ok
I have gone back to drinking coffee but surviving it so far.
I hope this drug/diet combo will do the trick so that eventually I’ll get off the meds…
Good luck to all those out there still searching for the magic recipe. It does exist, but takes a while to get there…!
PS also on magnesium and Vit B2 daily as per Dr S recommendation.