Hi All, just thought I would share with you a success story but not of a miracle medication cure but one of looking at life differently. For many years I have been told by medical professionals and family ‘oh you need a hobby to take your mind off your illness’. I used to get so angry when I heard this and how dare they think that having a hobby is going to make me feel better either physically or mentally. Oh have I eaten my words!! At the beginning of this year I decided I WANTED a hobby not NEED one and I made a huge list of resolutions and the first one was to keep to my resolutions for the first time in my life. I decided I wanted to grow my own vegetables even though I have only a small back yard with a few flower beds. I began planting and my mum bought me a greenhouse. In the past six months I have worked hard and have enjoyed every minute of transferring my yard into a little market garden!! (little being the operative word). Being out in the garden tending to my plants, nurturing them and watching them grow definitely takes my mind off being ill. Don’t get me wrong it is difficult at times to concentrate when re-potting seedlings and very often I have had major dizzy spells that has made me go inside for hours, but I always get back up and finish what I started. Just doing something rewarding that I can look back at has so helped my mental state. No I am not better and having been told by neuro I never will, rather than collapse in self pitying heap, I have got off my ever increasing backside and have done something I surprisingly get immense pleasure from. In the past year my anxiety has increased so much, especially when I am left alone at home, but the minute I go outside and start doing stuff in the garden my anxiety eases!!! and I become engrossed.
Anyway that is all, just thought I would share this mini success story.
Great to hear you are mentally feeling better. Question, why woulld your neuro tell you that you will never be better dizzy wise?
Just curious, because everyone that I have seen said it will get better.
I have also gotten better several times before.
That’s great news Angela. So happy for your breakthrough even if it’s not a miracle cure. I have posted an update on my situation today and I hope that the better times continue for us! x
The ENT consultant said I had lost vestibular function in my right ear and in most cases the brain compensates, but in my case it hasn’t and after two and a half years it is unlikely it ever will. That’s what he saying anyway, this was reiterated by the neurologist too and without major brain surgery they will never know why my brain hasn’t compensated. So If I still spin in bed if I lie now after all this time, it is unlikely I will ever be able to sleep normally.
Thanks for the response. I hope they are wrong. Glad you are mentally feeling better.
do they say why u havent compensated? have they diagnosed you with mav?
Have any of the doctors suggested vrt? That is only, they say, if your mav is mostly controlled though because otherwise it can make the migraine state way worse. That is what I have gathered from reading anyhow. I know vrt can help because I did it over a year ago and It helped, but I was not doing the lifestyle mods becuz I was misdiagnosed with Ménière’s disease. I know vrt can be a slow process and difficult. I am still trying to get alot better becuz I was on daily klonipin and got off it without tapering(I had no idea how important this was and how my brain was super sensitive). That sent my mav into “hell” and trying to do everything pretty correctly now-- so grateful for this site. My pt would have me “practice” getting in and out of my bed.
Gardening can be so theraputic - there is something very satisfying digging, planting and nuturing those seedlings and having to care for them! I love to get out in my garden as well.
I’ve been reading your story for a long time and know you have had a very rough time so am pleased you have found a way to take your mind off this illness and get such a lot of pleasure from your garden.
It sounds as though your doctors haven’t been very supportive or positive for a recovery which would naturally have made you feel depressed and anxious. I wonder whether you have considered seeing Dr Silver who, from from I hear, would never tell you that you wouldn’t ever recover and would not give up on you. There are always new treatments being made available, still more med combinations to try.
I have had Vestibular Migraine since November 2010 and have tried quite a few meds. Recently had been doing quite well on Topamax 100mg + Lexapro 10mg. ‘Out of the blue’ I developed severe spinning vertigo and terrible balance. Like you, I couldn’t lie flat without triggering vertigo. My neurologist has upped my meds & is confident that will control symptoms. If not, there is still room to go higher. No mention of “brain not compensating” in fact my neuro has never used that term.
Sarah, it was the ENT consultant who said once you have lost vestibular function and it hasn’t quickly been compensated, then it never will. Oh and to accept it and get on with my life!! Neuro said pretty much the same ‘just get on with your life’ which I do try but at times a pretty miserable restrictive life.
Lpeers, yes I have had VRT, once many years ago when they thought I had menieres disease and once again a few years ago after my big attack. Both occasions didn’t help but after my big attack I did my own vrt in that all the stuff that I wasn’t able to do like walk, bend down, look up, watch television, go about daily life and do basic tasks that I hadn’t been able to do through dizziness, I began to push myself into doing them and eventually could do them without feeling really bad. That way I built my life back up and I suppose its vrt but not with specific exercises which I didn’t find helpful but pushing myself to do basic tasks that I so wanted to do, helped immensely as they had a purpose. I hope this makes sense
Barb, I suppose I have confusing diagnosis with ENT and Neurology. Nobody can explain why after 15 years of having so called menieres disease and managing to live ok with it, I have a huge dizzy attack that took my balance completely, leaving me unable to walk without assistance or even move any limb for that matter without spinning and for it to last into its third year. ENT said not menieres but couldn’t explain the lack of compensation or loss of vestibular function altogether and that’s when I was told to live with it. I then took myself to neuro I suppose and said I thought I had MAV and they agreed and prescribed pizotifen, Topamax or amitryptiline. I am still on pizotifen and still bad but can’t take Topamax at moment due to me being on high dose HRT. I am struggling along. Have been off sick last few days with dreadful fainting fits. I am so bruised from falling. So is this ENT or NEuro. Its all so frustrating isn’t it. How did you do going on Topamax. How did you get to 100mg? I hear it is really hard. Did your neuro say why you can’t lie down without triggering vertigo. Did he offer you any advice on how to avoid going dizzy. I start off sat up in bed and I must slide down and then wake with terrible vertigo. I am thinking of getting a reclining chair instead of a bed!!