hi all ive put myself in a very bad place with my recent relapse,im scared im frightened and in tears constantly this has ruined my life and no one understands, I don’t want to just deal with it forever I want it to go away for good! last night I had a major panic attack leaving my 11yr old son crying and not sleeping hes fed up too bless him, how am I going to cope?
Hello . I am so sorry you are having such a hard time at the moment and I completely understand the not being understood feeling, it is unfortunately part and parcel of having a disease that people cannot see and it is very difficult to cope with on top of all the ghastly symptoms. There is a vestibular diseases website called VEDA which has 10 things people should know about vestibular diseases. It does not cover all our symptoms but 10 of them at least. You can print it out to show to people who need to know at least some of what you are going through.
Are you taking medication? It is very important that you do because it really will help you. I have nortriptyline for every day and prochlorperazine as a rescue medicine when I feel really sick. It helps big time. It takes a couple of hours as I have one that you put between your cheek and gum so it melts very slowly but after a couple of hours the nausea goes away.
With medication you will find your way. Just remember to be kind to yourself and accept that for now you are unwell and on a journey to get better. You will feel well again but you need help to get there, support from your family and time to rest. If you try to carry on as normal it will make things worse, believe me I know because I hate being unwell and I tried to carry on and just became more and more unwell as a result. Take care of yourself, give your body a helping hand to heal and recovery will be quicker.
iam taking nortrptyline and propranolol, im just sooooo scared that this is with us forever that I carnt deal with it my anxiety is making things so much worse but I carnt get a grip of it! I will never be myself again will I? thank you for your response!
I am so sorry to hear you are feeling so awfull. This whole disease is demanding a lot of courage and positive thinking. And to be honest, that is quite a hard thing to do/have when you are feeling so so bad. My journey exploded after 2 years of vague symptoms and misdiagnoses with a big bang (bppv) and ever since I am lying in my bed…been 4 weeks now. The only thing that helps for me is keeping the faith that we will get better and this is ‘just’ a big bump on the way up. Oh and crying helps too, crying and reading stuff about this disease (here and on facebook).
I always say that people who don’t understand are tremendously lucky because they don’t understand! That helps for me to cope with people who think I am a complainer.
Thinking about you and wishing you all the best!
thank you agnes, im off to see my gp in abit to see if they can help as im not coping at all! x
Let me know how that went! Maybe the doc can prescribe you some relaxing medicins to get you through these days. You are not alone!
Sweetie, we ALL want it to go away forever, in fact, not even start in the first place!!! It’s degrading, it’s frightening and a whole lot more!!! I know it’s not what any of us wants to hear, but until medical science can come with an answer - I’m afraid the coping mechanism has got to come from within yourself. You have got to just draw on your own inner strength (and YES! we ALL do have untapped reserves!!) - and decide that we are not going to let the beast dominate us, for your own sake as well as your son’s. We all know where you’re at, but unfortunately all we can offer you are comforting words borne of experience ! ‘Others’ don’t understand…sad but true. When one says dizzy, they think of how you feel after getting off the merry-go-round…they have no point of reference to understand all the far reaching effects you are experiencing.
I can offer no advice about meds, but have your Dr’s given you something to help ease the panic attacks and depression? I would think that would be a good place to start taking your life back??? Try not to look at ‘the rest of your life’…just about coping to-day, and then to-morrow… and remember to go easy on yourself!! You won’t get better over night
I really hope you can find the right meds to help you soon! If you can get over the fear, you will see a little glimmer in the distance…grab it and hang on!!
Good luck - thinking about you and sending good vibes!!!
Mazzy, your post makes me cry! I am not feeling good as well at the moment and all of your words (although not written for me haha) are so true and so very helpfull! Thank you
Thank you Agnes! I believe that forums/support groups are there to try and help others facing the same problems. Many, many years ago, before the internet, I gained support and understanding from a snail-mail news group, where you had to wait for the next newsletter to arrive in your postbox
I wish you well and hope that this, too, soon passes.
thank you for your kind words ive just been to the docs and they gave me diazepam to calm me down! x
Gosh sorry you got so anxious, that’s a horrible feeling. I once got so bad I couldn’t swallow.
Agree with remark about using inner strength.
Three things to consider:
I found some non-medical psychotherapy very useful. Ask your doctor to refer you to a therapist who has experience with tinnitus and/or vestibular patients if possible.
No-one gets better without mentally getting on top of this as anxiety is a huge exacerbator of the condition. You have to find some inner Zen to prevail against it. Look at anxiety as an enemy too and tell it where to go.
Others that love you are counting on you to be strong. You have no choice.
You got through this before, you are still young and have your whole life ahead of you. Don’t give in or give up!
thank you james I know all this but its so hard to put into action isn’t it, im so tearfull and frightfull I feel like MAV as won and to never be defeated, I carnt find the fight
We’ve all felt that way. It may had won this week’s battle, but never the war!
It’s probably a saying you know but I love this one in harder times: you never know how strong you are until being strong is the only choice you have!!
And do not forget that you are allowed to cry and feel desperate…this is such a difficult thing…and you are only human ey! So cry loads and scream and shout and then get yourself together and fight this beast!!!
what if im fighting a losing battle?? I feel doomed!!
You won’t! You are allowed to feel this way…but you will not loose this battle!
Can you tell me some more about yourself? And your son? He is 11 years old?
I saw some other posts of you as well. Seems like you recently upped your medication? That could also be why you are now feeling so awfull. Did you try the Diazepam the doc prescribe you?
Yes you can overdo the meds. My amitriptyline works pretty well for me at 20mg but I get more dizzy at 30mg. Same would happen with Nori though your optimal doseage may vary. The two drugs are dose equivalent I’m told.
Hi Mellybob, this is something that I’ve struggled with a lot too. I have a 7 year old daughter which in a way I think makes it harder to accept.
Have you ever heard of the law of attraction? Its something that I use a lot and it really helped my anxiety and depression. I started turning around all the negative thoughts I had about my illness. When I would find myself saying “I’ll never get better” I stopped myself and said “I’m getting better, I’ll be cured” and it really changed things for me. I know it can be hard when you are in the midst of something as terrible as MAV. I no longer spend every day in bed. I just take everything one day at a time and do what I can. Start telling yourself that you can cope, and you will get better.
If you have a chance, google the law of attraction. Just start telling yourself positive things. Its not a fix all but it does help.
Wishing you the best.
I hope the diazepam is starting to take affect, and that you are feeling just a little calmer than yesterday…That is the first step!!! Have a better day - sending calming vibes to-day!