While at the moment i am copong fairly well mentally despite being ill every day, i do feel fed up at times with the notion of how long it takes to find success with vestibular migraine. From my first trip to the gp until i eventually found a med that worked was 3 years in total and it was absolute hell on earth. I really really struggled through that time. Unfortunately, although i was feeling well on the med, i had to come off it and have not been well since. I am currently waiting to see my headache specialist in october, so i know i cannot start a new treatment until then. But what are the odds of the next thing i try actually being successful, without intolerable side effects? It could be years before i am well again. Each treatment requires 3-6 months to begin working and the gradual process of healing to maximum wellness can take longer. It gets to me that it could be years before i am well again. There are so many things i want to do and i am actually really looking forward to the future. When i am well again i will be appreciating life to the max. But this condition has been with me on and off for over ten years now and has really limited my youth. I am 33, still live with my parents, have never worked, never been in a relationship. I am housebound, and during my worst times also in bed all the time. I can only do things like watching tv, reading or browsing my phone in episodes of about 1-2 hours at a time before i need to rest due to dizziness. I didn’t even wash my hair for 6 weeks when i was feeling bad. I don’t eat proper meals because of sickliness and stick to small portions of simple food. My life is limited and i am tired of it. But i know it won’t be over soon. I hope that the next treatment will work without side effects and that i can return to the wellness i had with Flunarizine, but i am also prepared for the possibility that it may not work or cause side effects ,and thus i could still be going through this horrible condition for yeaes to come. I often wonder how much more of my life is this going to limit, for how long? It’s depressing.
Sorrry for the long post, i wanted to ask: how do you cope with the passage of time qnd and the possibility that it could be years before you get to where you want to be?
Hi Miss Migraine (sorry can’t see your name)
This is a post that resonates with so many of us on this forum and I wanted to let you know that these hard times will pass at some point and get easier. Fluarizine worked once and so something will again.
I’m 30 and you’re 33 and I absolutely understand when you say you feel robbed of life since you’ve had this for so long. I was only 18 when this horror started too. I am so sorry you’ve not had the opportunity to live your life to the full yet. I know there will be a med to help you out there somewhere!
To answer your question how do I cope with the lengthy relapses and disappointments, I think for me it’s about the fact that I know what wellness feels like and surely at some point I will get well again. I have done before and so I can get there again. You will do too and the fact you’re seeing a Neuro soon is another big positive step. I want you to know that there are so many of us on here feeling the same way and you are not alone. I am certain that something will help you. Hang in there lovely, it sounds to me that you’re pretty positive as it is given the fact it’s so disabling for you but try not to despair, bright days are coming
I’d say. Don’t ‘cope’. Sitting still and waiting is doing nothing for you, either physically (too long abed) or mentally. Get proactive and push and push hard. Don’t try making yourself accept a long protracted period of what can only be described as misery. I understand you are currently very down and depressed perhaps even clinically so but don’t just accept your current state. Take immediate steps to do something about improving it. OK you will most probably always suffer with this condition but you are only 33 and should be able,r to obtain a far better life living with it than you currently experience. Take Action.
Don’t recall anything much of your previous MAV history and what drugs you may have previously ‘failed’ but maybe you need to try again. Can’t understand why you are having to wait until October’ to see a specialist. Suggest you quickly go find another one. If travelling is impossible much more virtual opportunities exist. One thing we can be glad of Covid I suppose. I suspect the long delay may be the fault of the NHS. If so just go private. Beg or borrow the fee somehow. Just do it and do it very soon. The National Migraine Centre offer virtual appointments some for a fee and some funded by donations and free to the sufferer. Visit their website. Meanwhile speak with your own GP and request a referral to some counselling for dealing with your current emotions. The NHS offer many types and forms (again virtual classes on line and by telephone) all for free.
Life is too short to sit and wait.
It’s perfectly possible to gain excellent control over this beast with medication. I know. I’ve done it and so can you.
Thank you so much for the kind words.