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feeling sad and very alone

I’m new to this forum but hoping i can talk to some people who understand whats it’s like to live with this monster! I was diagnosed in 2008 and generally have been very lucky in that the majority of my relapses have been sensory only. Due to this i have been very positive about my disease and have not let it rule my life. However in feb this year i started copaxone due to producing antibodies to rebif. in march i started with lightheadedness and was told i had an ear infection. The lightheadedness has persisted since then. i was seen by ENT and told i had vestibular neuronitis and it would settle. It hasn’t and my neuro thinks it could be a brainstem relapse. everyday is like a nightmare. i’m living in constant fear that i’m going to be lightheaded forever. it kind of feels like i’m drunk when i’m not. i’ve tried antivertigo meds with little success. i’m just so down and tired of it. i have massive support from my husband and family but no one can really understand and i just feel so alone. somedays i just sit and cry because i don’t know what else to do. i feel such a burden and a let down to those around me. sorry for waffling, just needed a release. any advice welcome. thank you

Aw Nicola I am so sorry to hear you sounding so down and frustrated. I’m not familiar with what you are experiencing, but is there a next step, does your neuro have an idea of what can be done? It must be really horrible to feel that way all the time. Do keep posting, there are lots of people here who are happy to listen and give advice. Please take care and I hope you can get some help soon xxx

Thanks for replying. I just keep being told it will settle and i will learn to compensate for it but it’s been going on so long i feel like it will never end. I’m only 29 and have a beautiful 11 month old little boy who keeps me sane, but i feel like i can’t plan anything or do anything because this is takinf over. It doesn’t make me feel like i’m going to fall or even affect me functionally, i’m just psychologically battered! I’m just glad i can talk to people who understand a bit more. Thank you again :0)

Hi Nicola,

I can really sympathise. I get lightheaded but thankfully not all the time. It really does cut you off from “normal” life. It sounds so innocuous but is very debilitating.

I can only tell you that mine comes and goes – I hope you soon experience some of the going. I find audio books are very helpful because I can sit with my eyes closed and my head rested on the sofa. Watching TV or reading is impossible and I find the less I move about the better. I guess not moving isn’t much of an option with a young child but you might manage the odd half hour

Jane

Hi Nicola,

I can really sympathise. I get lightheaded but thankfully not all the time. It really does cut you off from “normal” life. It sounds so innocuous but is very debilitating.

I can only tell you that mine comes and goes – I hope you soon experience some of the going. I find audio books are very helpful because I can sit with my eyes closed and my head rested on the sofa. Watching TV or reading is impossible and I find the less I move about the better. I guess not moving isn’t much of an option with a young child but you might manage the odd half hour

Jane

Thanks, it’s nice to know i’m not alone in this xx

I know what you mean, I was told in July I could expect my sensory symptoms to fade or get used to them… I’m still waiting. I am 31 and have two small boys as well (2 and 5yrs) and I do find it quite hard to be a bit ill but on the go all the time, it must be even harder when you are feeling like this all the time, you can’t disassociate from your head the way you sometimes can with other parts of your body. Take care, I do hope you notice an improvement over time. xx