Had enough

[missmoss83]

In 5 minutes, working on cet here because Im in Poland, I’m going to turn 30. And I can’t tell you how fucking miserable and depressed I am about moving into a new decade dizzy, still sick 2years on, and contemplating a complete life change just because of this shitty illness.

I don’t want to feel like this, I feel pathetic and awfully guilty for feeling like this- I mean for god sake, today I actually visited Auschwitz - suffering on the most indescribable level- honestly, unimaginable, horrendous, …nd here I am a few hours later, complaining about feeling off balance because I had a late night, an early morning, a long day, and then a row with Mr MM because he kept trying to make me drink vodka and the table was already spinning.

So now I should just shut up.

Blah.

Mav can do one. Stupid illness is nothing compared to somethings.
Very Confused feelings as I turn 30. Nobody else would really understand except you guys so thanks for listening.

x

[msmolly]

I hear ya.

Happy Birthday nonetheless.

Molly

[angdunc]

I hear your pain and frustration Missmoss and totally understand how you must be feeling right now on your birthday. Last night I wished I was dying like my Dad and we could go somewhere illness and pain free together. How bad is that!!! Am almost jealous of him that his suffering will be over soon. I hate the ups and downs, good one day and crap for two or three. I want to plan a little. I am sick of this struggle every day to do such simple things.

It so winds me up when people say to me ‘oh it could be worse’. Why should our suffering be classed as less than anyone else’s. We all suffer in our own way whatever we have and other people should respect that. I know some people mean well and think by saying things like it would be much worse if you had your leg chopped off for example, that it makes me feel better - well it doesn’t!!

Don’t you find having a screaming row makes you worse Missmoss. I do. My head throbs and I know I will be so much more dizzy next day.

Hope you can feel a little better to enjoy Poland today and remember we are ALL behind you ‘virtually’ propping you up.

Love Angela x

[Notchoma]

hi i am so sorry you are feeling down. i get just like this and get suicidal thoughts sometimes. you just have to keep up the hope that thing will get better. I do believe that most people will get better with these things but they take sooo long. all i can say is i understand and i am sorry.

[Jem]

Hi MM

Happy birthday! But sorry you are feeling down. Is it that you feel worse right now so feel as though you have taken a step backwards or is it just that you have had this for 2 years so the milestone is getting you down?

I know you saw Dr S recently. Did he have any thoughts on your overall progress or any idea of when he expects you to start feeling better? Have you started the Clonidine yet? I am really interested in that because I haven’t heard of it before but also because I think hormones might play a part in my VM (but not sure). What exactly does it do, ie what class of med is it? Does it alter hormones in the body?

Hopefully you will feel the benefits of the new med soon! xx

[KathyD]

Happy Birthday! Sending a virtual hug your way I am not sure which meds you take but are you taking an SSRI? I take sertraline (lustral)and find that helps me with anxiety/low mood. I was prescribed this many years ago for anxiety/dizziness which was, according to Dr Silver, apparently a bout of MAV. I have also had CBT which I think you have tried. I must say I find it really helpful. I don’t know when your last appointment was but it may be that chatting to a therapist may be very helpful at the moment. I think I recall you talking about mindfulness in one of your posts, (sorry if it wasn’t you!) this is a practise my therapist is very in to, maybe you could work on this?

I know how difficult this is, it is a life changing condition.Do not feel guilty about feeling sorry for yourself! I realise that meds and therapy aren’t exactly a cure for your low mood but they may help you to cope a little better.

I’m sorry if this message isn’t much help to you but please know that we are all here to chat to. It is very easy for me to say that I believe things will improve but I do believe they will. Just try your best to keep that thought in your head. When I have bad days I always try and remind myself of that.

Kathy x x

You’re right, MAV can totally do one!

[david_shapiro]

I hope it’s been better since your BD.

What was the rationale for pushing vodka?

XX

[whosthatchick]

— Begin quote from “KathyD”

Happy Birthday! Sending a virtual hug your way I am not sure which meds you take but are you taking an SSRI? I take sertraline (lustral)and find that helps me with anxiety/low mood. I was prescribed this many years ago for anxiety/dizziness which was, according to Dr Silver, apparently a bout of MAV. I have also had CBT which I think you have tried. I must say I find it really helpful. I don’t know when your last appointment was but it may be that chatting to a therapist may be very helpful at the moment. I think I recall you talking about mindfulness in one of your posts, (sorry if it wasn’t you!) this is a practise my therapist is very in to, maybe you could work on this?

I know how difficult this is, it is a life changing condition.Do not feel guilty about feeling sorry for yourself! I realise that meds and therapy aren’t exactly a cure for your low mood but they may help you to cope a little better.

I’m sorry if this message isn’t much help to you but please know that we are all here to chat to. It is very easy for me to say that I believe things will improve but I do believe they will. Just try your best to keep that thought in your head. When I have bad days I always try and remind myself of that.

Kathy x x

You’re right, MAV can totally do one!

— End quote

Great post Kathy. I agree with you. Things WILL get better, they just will… x

[missmoss83]

Thank you so much to my MAV family for your responses.

Sorry I haven’t replied sooner- I decided to go full pelt at the vodka, which resulted in the worst hangover ever whilst down a Salt Mine… The worst part? Walking down 62 flights of stairs, with full on hangover, each flight of stairs thinking we were at the bottom, but no, never ending, like we were in some kind of bad dream, and the woman behind me says to her friend “Is anyone else feeling dizzy?”… Errr, yeah!!! That’ll teach me… Maybe

I then had to move house and am flying to Miami in 2 days time so it’s all systems go go go.

It’s so great to have you guys here, to know someobody else knows what I’m talking about and who just ‘gets it’.

Angela- I’m so sorry you felt as bad as you say, I think I know where you’re coming from. I also know what you mean re planning. Planning is impossible. I am the perpetual canceller. So much so that people don’t bother asking me to do stuff anymore.

A screaming row, or any kind of sudden emotion, such as shock or embarassment, seems to produce an instant reaction. My friend embarassed me the other day by getting the waitress to produce a birthday cake with cancdles and the whole restuarant filled with the tune of Happy Birthday. It was funny but my head started spinning like mad!

Your last sentence about propping me up was gold dust- thank you so much xx

Notchoma- thank you for your understanding. I believe we’ll get better too, it’s just a bloody slow process. Need a fast forward button! x

Jem!- How are you doing? I feel worse since December still and the milestone of turning 30 and having this for 2 birthdays is getting me down I guess more.
Dr S didnt give me an idea of a time period of when I’d be well by. Re the clonidine, I’ve been taking it for about 5 days now. I think I’m seeing improvements. I will write more in a separate post!! Fingers crossed!

Kathy- Thanks for the hug I’m not on an SSRI. I heard you can’t mix them with a tricylcic antidepressant, do you know if thats right? I have a book on CBT but find it hard to digest. I asked Dr S about how to cope with the psychological aspects of this and he said there’s no point going to a counsellor who’ll drag up old stuff and make you feel you have more problems!! And recommended meditation, tai chi and yoga. I haven’t followed up on the mindfullness either, but I did just buy this book. Has anyone else read it: Full Catastrophe Living: How to cope with stress, pain and illness using mindfulness meditation [Paperback] by Jon Kabat-Zinn.

[robertgreen99]

Hi MM

The book looks good. I am tempted to get it myself. Dr S mentioned Thai Chi to me as well. He said it helps with stress and balance etc.

A quick change in mood like embarrassment, anger and frustration also flares up my MAV

x

[Jem]

Yes me too, any extra emotion makes me feel more dizzy. MM hope the clonidine works, keep us posted! x

[KathyD]

Hi missmoss,

I think you may be right. I am pretty certain you can’t take an SSRI whilst taking a tricyclic antidepressant. Check with your Dr though.

I am really surprised that Dr S didn’t value the CBT. Obviously it depends on your needs but CBT really isn’t a matter of delving in to your past. I understand how Dr S would take the view that it wouldn’t be helpful if he thinks that! Take a look at the link below, may make things a little clearer! I find it incredibly helpful. Obviously you need to build up a good rapport but I think it’s really beneficial.

nhs.uk/conditions/Cognitive- … ction.aspx

Anway, enough of me preaching CBT haha! It’s just that I was sad to read how low you were feeling and thought talking to someone, outside of friends and forum, may do you the world of good

I haven’t read that book. Sounds interesting. I am surprised Dr S mentions yoga as I know that can make non dizzy people feel dizzy! Personally I love it but have shied away from it since this. Worried I may fall or something!! Will definitely book myself in to a class now. Seriously need to shape up a bit for the summer!! I’m sure the propranolol I’m on is making me gain weight???!! Grrrr!!

Kathy x x x

[sarahd]

I think KathyG is on nortriptyline and zoloft.

KathyD how is the propanolol going? How long have you been on it and what dose are you on?

[hillsta]

KatyD - Dr S said that he didn’t recommend Counselling. He is all for CBT. He has a CBT therapist at his hospital.

CBT and Counselling are different. CBT really helped me

[KathyD]

Hi Sarahd. I’m doing very well on the propranalol Touch wood!! I’m on 240 mg now and have been for less than a month. I can definitely feel the difference. I don’t want to speak too soon but I barely notice any dizziness! Fingers crossed it stays like this. Still have some head fullness/pain etc. I can’t tolerate patterns or stripes very well, they make me feel nauseous but I can cope with that much more than I could the 24/7 rocking sensation! How are you getting on? I hope you are beginning to see some improvements.

Hillsta: Hi

Kathy x xx

[sarahd]

that is so wonderful kathy, glad to hear you are improving. 240 seems like a huge dose- what is the maximum for migraine? Do you feel it helps your walking at all? What side effects are you getting?