Thanks both! I just assumed I would gradually get better and better through time but obviously not the case! Iām only 27 so I eventually want to come off meds so I can start thinking about having a family but Iām also scared this wonāt happen as Iāll never feel symptom free or that Iāll have another relapse.
Kerry, sorry to say but recovery from this is measured in years, not weeks or even months and itās not always clear you are getting better as the symptoms fluctuate so much (but you definitely should improve dramatically!)
The first thing to get through is the anxiety. That anxiety, to some extent at least, drives the condition and worsens your quality of life. If you are not seeing a psychotherapist experienced with vestibular conditions, consider it.
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My anxiety has definitely calmed down from when this first all started but I still have my days where I worry Iāll never be back to my old self but I just have to hope and do what Dr S says.
I was just doing very well at about 70% then seemed to go backwards which is very disheartening and not sure why!!
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Does anyone have any ideas why Iāve gone backwards? Iām even getting more headaches. Iām still on the diet and vitamins, so nothing has changed in that aspect. So not sure why Iām feeling worse.
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Still after some advice please! Do baselines change? Mine has definitely got worse since last summer and I upped my medication in November but seen no improvement yet. I had a relapse for 2 and half weeks after a cold and infection in December which then calmed down to a baseline but nowhere near the baseline I had in July/August/September last year. Does anyone know why this could be? And how I can get back to that and even finally getting rid of the 24/7 symptoms?
My experience was āeventuallyā. I was off meds after 1.5 years but 24/7 symptoms persisted for another 6 months to a year. Up to the point I stopped meds it was really hard to tell if I was getting better because symptoms evolved, morphed, and fluctuated so much. The main reason I gave up medication was I had a hunch they werenāt improving things anymore. And I was right.
I suspect you are just going to have to roll with it for a bit and take heart that most people improve?
You could always experiment with the regime? But I had a feeling medication was doing as much as could be expected so stuck with the same med and dose.
Thank you! Itās just strange as I thought the longer Iām on the meds, diet and vitamins the better I would get, that is proving not the case. Why is the process of recovery not linear? I just canāt understand why my baseline is worse when surely it should be getting better?
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Thatās one of the million dollar questions. Itās clearly a lot lot more complex condition than a simple healing wound.
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Apologies for droning on about barometric changes, but I am definitely wondering if the weather changes are affecting you like it does me?
I use the WeatherX app to monitor pressure changes and have found it to be reasonably accurate. Today I have a bit of ear pressure in my right ear. and louder tinnitus and the app is telling me to wear some ear plugs!
Other ear pressure and tinnitus triggers for me include:
Lack of sleep
Stress
Aerobic exercise - fast walking up the steep hills near me
Too much screen use
Being too long in a noisy environment
My husbands driving - occasionally- it was definitely a trigger in the early days and I had to use a neck pillow.
As James has said It is quite a complex condition and it can take time to get under control, which, I know is not much comfort when you are feeling worse than you were before. Hopefully things will start to improve again soon.
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So I came down with yet another cold but luckily not as bad as my last one. My head is abit worse but again luckily not as bad as my last cold thank god but still horrible and uncomfortable. Iāve also had a lot of pulsating tinnitus and head pressure and I donāt think this had calmed down fully yet and then caught the second cold so has ramped those symptoms up again. So essentially I didnāt have enough time to return to 70% baseline as I caught another cold, I wonder if Iāll ever be able to get back to where I was prior to both this colds!? I do hope so but itās taking such a long time 
After starting on pizotifen in January 2022 I finally started to feel some improvements and was about 70% in the summer but then after the summer I started to feel worse so I upped my dosage of pizotifen to 2.5mg, however I havenāt saw any change since this increase which was back in December 2022. I then caught a really bad cold/flu which made my MAV flare up massively and dropped to about 30% I felt really awful. It did calm down but no where near where I felt last summer. Iām probably at about 50/60% now, Iām still living my life but I just feel horrible. Does anyone know why this could be and any advice? Do I increase my dosage of pizotifen or do I need another call with Dr Surenthiran? Although I only had my follow up in December.
3 posts were merged into an existing topic: Janās MVBD / MAV Escapade
Sorry to hear that you are not feeling any better - there have been some nasty cold/flu bugs around and from what I hear have knocked people for six. I think we āmavversā are definitely hit more by these viruses. If I was in your position , I think I would definitely contact Dr S again for some advice and take it from there.
Take care and let us know how you get on.
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I know many people probably leave this forum when they get better but is full recovery possible with this? I always remember Dr Surenthiran say to me āwhen this is all overā so I presume we can make a full recovery but thereās not many stories to prove this. Iām a year into my diagnosis and although I am a bit better I thought Iād be way better than what I am. I am only 27 and so would love to start a family soon but how can I do that when I still feel crap? This illness has definitely wrecked my life and itās a struggle to believe I will get back to my normal self.
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It may depend on what is driving it for you and if you are able to get that under control.
I was 95% better after 3.5 years but that last 5% (relentless tinnitus and the odd scotoma) has been impossible to budge so far.
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Maybe you need to try a different preventative? Dr Hain has a nice flowchart of med progressions on his site. Normally its customary to start on an antidepressant (Venlafaxine, Nort, or Ami), and if that doesnāt work then you move onto an antihypertensive, and further through the progression. No idea if thatās how your doctor works, but in general, that seems to be the norm.
I definitely noticed some improvement after a couple of months when I started pizotifen, Iām on 2.5mg at the moment and I can increase further if Iām still having symptoms but I donāt know if it will make any difference.
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maybe its worth reaching out to your Doc about whatās going on. I know sometimes if one thing is working but if its only a partial response, they might add something on, but they would probably want to see you again.
Hi all! I decided to increase my dosage last Monday and then Thursday I became quite ill, which I think is a stomach bug and am still feeling unwell, nausea, temperature, belly pain, headache, exhausted etc. Do we think thereās a link to me increasing my dosage and itās this that is making me feel unwell or is it a stomach bug and just coincidence it happened the same week?
When I reduced Pizotifen from 0.5 mg to zero in January, I felt nauseous, had no appetite and was a bit āoffā for 2-3 weeks. If these were your symptoms, then it could be related to your Pizotifen increase. My thinking here is that if a reduction of Pizotifen causes these symptoms, then an increase of Pizotifen might cause these symptoms as well? However, you also mention fever, and, in my view, it sounds unlikely that Pizotifen would cause a fever. Fever is not listed as a side effect as far as I am aware. It could be a stomach bug as you suggest or maybe even covid? But, I am not a medical doctor and we canāt diagnose on this forum.
What helped me when I felt nauseous and āoffā was lots of ginger. I used it in every meal (as fresh ginger), I made my own ginger tea and I ate ginger sweets. I also found probiotics useful.
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