For those that achieved 50% reduction in total daily symptoms but then started to plateau, what did you do next? As I’ve noted in my diary, I’ve been on 37.5mg of venlafaxine for about 2 months now with great success, but that level of improvement is starting to level off from what I can see in my data. I’ve been thinking 1.) be more aggressive with diet/lifestyle measures 2.) consider upping dose of venlafaxine to 75mg 3.) adding on another medication.
For those that took a combination of medications to get closer to 100%, how did you get there?
Just curious to hear from anyone who’s had a similar experience.
I am at a similar spot as you, but in the last week feel that I am improving a lot. In the last 2-3 weeks since reaching a plateau on 10 mg amitriptyline, I have (1) increased to 20 mg very slowly, (2) taken a load of supplements (including magnesium glycinate, B2, D3, CoQ10, B12), (3) am religious about the HYH diet, (4) exercise daily no exceptions, (5) do vestibular rehab exercises from a therapist, (6) keep positive and keep moving. I havent gone this long with out a huge relapse since it all started. I am still sensitive and symptomatic but my capacity feels bigger as more days go by that I avoid extreme dizziness.
nice congrats. I’ve been really lazy with all the lifestyle things so I’m thinking that I’m going to have to go back to being extremely aggressive on them, like with HYH diet and so on and so forth. I am completely tapering off of caffeine, which I’m hoping has big effects for me (I have had caffeine every day of my life since I was 14!), but struggling with the other dietary elements (at an entire cheese pizza last night and having a minor dizziness flare today).
I also have been pretty lazy with supplements. Effexor is doing all the heavy lifting right now and as someone who has read HYH I should know better than that!
thanks for the reply and advice. really helpful to hear
If you’re at 50% with caffeine and cheese pizza, then I feel optimistic about what the diet could do for you. I was doing the diet begrudgingly at first, but then I got into it learning to make some new foods like hummus and gnocci and my own tomato sauce. After I got in the swing of things, I actually really enjoyed making the food. But my natural inclination is to order take out and drink coffee at 9 PM so im with you. All this dizziness is making me routined and type A which is not my style, but im accepting it!
For me, diet, sleep and exercise were the most important things. I have always had a diet consisting of mostly unprocessed foods, but since having VM, I eat no processed food at all. And I reduced my sugar intake (from fruit, I don’t eat processed sugar) to low. Daily exercise was also important. I go for walks, do strength training and have recently taken up swimming again (30-35 minutes in a swimming pool). I also had afternoon naps if I felt like it.
These changes helped me to get to 50% and now I am about 98%. And they enabled me to come off my medication.
Hi @Katharina how long did it take for you to reach 98% from 50%? How did your worklife play into all this, were you taking time off or going in full time, etc?
It took about 18 months to go from 50% to 98%. I am retired, so that made it much easier. I am not sure how I would have coped if I had worked full-time, I imagine that I would have needed to take time off.
I went to 75mg and got yet another step change in symptom reduction. I went again to 112mg, another step change, and then settled there as the side effects (mostly extra sweating) started to become annoying.
Agree with the comments on lifestyle changes – good quality sleep and regular exercise keep things nice and stable.
Hi! What was your timeline? How long did it take you to get to 50% then 85%? I saw in your other reply 18 months is that in total since becoming chronic or 18 months extra?
I was hospitalised for four days and the neurologist put me on 4 x 0.5 mg Pizotifen. There was no tapering at all, just 2 mg straight. It took about two months for me to feel about 50%. Then I slowly improved and I reduced the Pizotifen very slowly. It took another 18 months to go from 50% to 98%. I have been feeling 98% for the past two months and I am on no medication since the middle of January this year.
But it is important to remember that I had lots of ups and downs. Sometimes I felt that I had gone back to 50% or worse, then I improved again.
I should also mention, I am not 98% all the time, I have some days where I only feel 70%, 85% or similar, but overall I feel 98%.
Firstly, well done on such an improvement!! Not easy with this condition. For me, moving from plateau to improving further needed a combination of factors - as is the case for many of us! I take magnesium glycinate and riboflavin, avoid MSG and caffeine (as they are two huge dietary triggers for me), I walk daily and exercise 3/4 times a week (yoga and resistance training), and I need 8 hours sleep to be well. But the thing that helped me the most was adding Betahistine and increasing my Amitriptyline to 20mg. Still a low dose and I have plenty of scope to go higher but I personally would rather keep my dosage lower and manage my lifestyle. I’ve been on HRT for about 10 months now and have seen a definite improvement in my symptoms with my hormones being better balanced. I also take medication for thyroid autoimmune disease so keeping that in check also helps. I’m almost 4 years in to my vestibular conditions (VM and PPPD) and am now in a really good place - it’s not always been an easy path. Definitely a continuing management however as easy for me to be complacent and do too much - my body ALWAYS lets me know and I pay the price! Eg I did a 6 mile walk a few months ago, up and down steep hills in the Cotswolds and then had a family funeral 3 days later - 5.30am start and 10pm home with 9 hours driving. Took me a month to get back to baseline from that!
I’ve had my symptoms since September 2021. I started pizotifen in January 2022. I’m still yet to have a day with no symptoms, is this going to happen or am I constantly going to have symptoms for the rest of my life? Dr S said it’s possible but it’s really hard to believe it when it’s been so long with no let up. Some days are worse than others but there hasn’t been a time where I’ve had 0 symptoms
It’s really hard when you’re in the middle of it all, it feels endless - we’ve all been there. My symptoms started in 2019, it’s taken me a long time to get to where I am and it certainly wasn’t a linear path. Try not to be disheartened, one day at a time x
Not 100%, no. I still get swimmy headed, can struggle with my balance and fatigue is definitely an issue. But, it’s all manageable and doesn’t impact me too much day to day. Perhaps 80/90% there? Which given where I was when this all kicked off feels pretty amazing! Don’t get me wrong, I’ve had relapses along the way and have no doubt there will be more to come, but they don’t last as long these days and so long as I look after myself, I am happy with how things are.
