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New here ... looking for reassurance


Yes about 2 months in order to have more good days than bad :persevere: but I did get good days when I first started the regime as well. I also thought I would feel better after a week :laughing:and was quite depressed when that didn’t happen. My husband reminded me that Dr S had said it would be a bit up and down to start with - I had not heard him say that, but there were a few other things I didn’t pick up at the time so I am glad that I took my husband in with me. I was so stressed that day that I couldn’t focus on everything I was being told by Dr S. I think feeling spaced out and dreamy is quite common - some people describe it as brain fog - and I do get that sometimes when I am tired.
My main issue was head pressure and pulsating ears combined with a feeling of being unbalanced - i felt like I should be walking with my arms out so i didn’t list to the side. One of the test done by Dr S and the Physio I saw was to get me to stand with my eyes close and each time I fell to the side - quite unnerving - the physio called it positive Rhomberg and he was the one who suggested I needed to see a neurologist! I’m so glad I went to that physio as I might not have found Dr S straight away.

My balance is much better now and my head and ears have been feeling good, apart from this last few days because of the head cold. :face_with_head_bandage:

I went on holiday just after I saw Dr S - a long drive up to the lake district - and I was dreading it because I was still feeling so weird - packing my clothes was a nightmare too as I couldn’t concentrate on what to pack! It did me good to get away, however, as I didn’t have to worry about anything and I think it helped. I am convinced that stress also contributed to my succumbing to MAV. :sob: So if you can get away with your BF it may help - see what Dr S recommends ? :beach_umbrella: Fingers crossed! :smile:


Hi Jo
I am hoping that will avoid the weight gain, but have noticed that the Pizt are making me feel hungry a lot of the time. I am being very strict with myself most of the time and perhaps the diet is compensating – no more red wine which I was having every night - a large glass too!


If you enjoyed a relaxing drink on an evening can you not replace the red wine with something else that wont trigger any symptoms? You deserve some sort of life! I could drink alcohol in moderation with Piz
Jo x


I am a bit worried about trying alcohol, but will possibly introduce white wine at some point. It was very strange that when I first got this I went completely off red wine and coffee and have only just started drinking coffee (decaf) again. I still don’t fancy red wine much, but maybe in another few months! :wine_glass:


Yes you know your own body and mind stick with what you do and dont fancy. I was only on 0.5mg of Piz for a short time whilst you are climbing the ladder to a decent dose. See how you manage it when you get back to work…i felt very very tired on a morning at 5 30am with it
Jo xx


That’s reassuring to hear that it takes a while to kick in , it’s probably also about the dosage too. I am hoping the higher I go the better I will feel. I have so many questions when I speak to him next week :grimacing: ah yes I’ve have most of those symptoms never knew head pressure could be a migraine :grimacing: … did you ever get any visual issues ?
Oh I 100% agree I was so stressed before my mav happened pRoBlEmS is how do you unstress when your feeling unwell. I def want to go away but my bf lives in California so can’t hack an 11 hour flight just yet please god soon tho :facepunch:t3::pray:t3::sparkling_heart:


I hope Dr S manages to answer all your questions - it will be interesting to hear what he thinks.
As far as visual symptoms go I didn’t ever see stripes or anything that obscured my vision, but i did have wobbly eyes - they seemed to pulsate in time to my ears and head which made using the computer difficult when I did try to work.:upside_down_face: I do a lot of typos at the best of times but that made it a lot worse - dyslexic spelling! I was really glad when my eyes settled down as it helped me to feel less unbalanced. I couldn’t tolerate bright lights either but that has settled down too and I am not as sensitive as I was.:grinning:
Gosh being separated an 11 hour flight must be hard :disappointed_relieved: - I am not good at flying long haul - or short haul come to that, even before I got MVBD. When we went to Florida many moons ago I had to have Valium to get me there and back - I get severe claustrophobia and don’t do lifts either - I’m a sad case! :sweat: Even some of the rides in Disney Land /Epcot gave me panic attacks lol! :rofl:


I do feel a bit left out when we go out with friends - the no alcohol and diet bore ! I am feeling quite tired today - I don’t sleep very well at night which is a nuisance - perhaps when I increase the dose in a couple of week to taking 2 at bedtime instead of 1 it will help. I need to go back to see my osteopath as that has been helping the lower back ache which is what normally keeps me awake. If it’s not my back it is being too hot and having burning feet and legs! Maybe going back to work will also tire me out. xx


Thanks for the reply jan :slight_smile: don’t worry I’ve hated rides forever makes sense now I know I have this ilness lol. Yes as for dr s I hope he can offer some reassurance it’s only a phone call app so hope he makes times poor guy is prob exhausted by us :joy:

Ohh I’ve heard of that I get more visual snow shimmering and visual vertigo very odd stuff . I’m not as light sensitive so I know the drug is doing something it just all feels so long lasting .

Amazing your going back to work :slight_smile: def think it will tire you out funny you mention the not sleeping since upping my dose I have the same but it always happens for me and the. Settles maybe it’s because it’s doing something to my brain :grimacing::sunglasses: yes it’s hard even more with me being sick but he’s been amazing and come to c me every 5 weeks I am hoping to move there end of the year if my mav allows it ! :blush:


How lovely that your BF comes to see you every 5 weeks :grin: - it will be great to move out there this year. A fab goal to aim for and to see off the MAV! xx


I can’t complain he has been utterly amazing ! And yes that truly my goal
For recovery :slight_smile: