Have posted on the forum a few times before but still relatively new to the MAV diagnosis.
I’ve been struggling emotionally with everything recently. The first few months I struggled most with anxiety, which seems to have subsided a bit now, but the worst is now motivating myself to get things done. I have a 4 year old and having him to look after keeps me going; I try to carry on as normal as possible for him, but for myself, I’m feeling pretty low.
How did you get through the darkest of times?
What kept you going?
I’m three weeks in trying propranolol 80 mg but seeing no effect. Am eating the migraine diet and have cut out all caffeine.
Have posted on the forum a few times before but still relatively new to the MAV diagnosis.
Hi Lucy, I may not be the best person to answer since I am relatively new to MAV also. I am 11 months in, with a few “diagnosis’s” along the way. How long have you had MAV? How long on medication? I am only just 4 weeks in to taking meds, so I am very new to finding “hope”. Throughout this journey, I look at time a little differently than I used to… I look at a day as simply 24 hours that will not define me. I now look at the future as simply tomorrow, every day as a moment in time that can be good or bad… but I cannot let the bad days define what my tomorrow may be.
One thing that has helped me is incorporating some mindfulness into my life. It is so easy to get caught up in negative thoughts with this disorder. Part of mindfulness is recognizing and accepting thoughts and bodily sensations without judgement. You may not feel well now but it doesn’t mean you will continue to feel this way. Do what you can and try not to beat yourself up too much with what you can’t do at this moment. It does get better.
Lucy, I was feeling like you describe a few months ago. I am taking venlafaxine and I think it helps both with symptoms and my mood. But also think that although maybe you will have this for a few more months, 24/7, that doesn’t mean that the intensity won’t change. I would say I am more like 21/7, but the intensity is much lower of the rocking… so it has slowly gone down. Think also that even without med you would probably get better, but meds help to make it faster. Last, not sure if you have to increase your med. @Onandon03 knows more about your med, but if this med does not work, there are many others. Make little plans, day by day, then you will start making plans by week, by month, and then starting to plan next summer’s trip. Play with your son as much as you can, be present, I do a lot of manual things with mine, that is great vestibular therapy (play-do, building towers, painting, playing with the ball, swing in the park-I know, crazy, but it is actually nice).
And for you, get a massage, some acupuncture, something that reconnects you with your body in other ways. You WILL get better.
Hi, we definitely know what you are going through. At my darkest times I created a poster that I printed and put on my wall. I still look at most days although I don’t need it as often. Its nothing earth shattering, but It reads:
- Never give up
- Stay connected (i.e. with people)
- Do your best
- Don’t struggle
If I find myself failing in any one of them during the day, I try to work on the next one instead. I think it may be helpful to do make your own list or something like that.
We all find ways, with meds and lifestyle changes to get better. And there are always worse medical conditions to have in life. Its just about making adjustments in attitude and habits and moving forward slowly. I say this even though I still have difficult days as well and find my own advice hard to follow.
Depression is a perfectly natural reaction to an chronic condition. It is also a known side effect of Propranolol. Best to listen to what @Naejohn has written, and just take one day at a time and live through it as best you can. Accept you are where you are fornow.Do what you can do but don’t overdo it. The Propranolol could be causing you to slow down as much as the condition may. Unfortunately three weeks on Propranolol is really only a taster. It can give excellent results if you can stick with it but I’d say you are looking at three months or more before you see significant improvement. It is slow to work I’m afraid as are most preventatives, if you really feel depressed you must go back to your doctor and see what they say. If they suggest antidepressants, ask them to consider Amitriptyline, Noritriptyline or Effexor because they are the antidepressants that will also best help with MAV. Please don’t think I’m suggesting you go down that route because I’m not. Only you know how bad you feel. Personally I think both Anxiety and depression is best managed where possible by sorting the root cause. CBT/counselling if available is often a better option than pills. Helen
Hi Lucy. I 100% no how you feel! I am 32 and too have a 4 year old and a 6 mth old. I have never been depressed before until this illness, quite the opposite as I always loved life! I think anxiety and depression are part and parcel of this illness.The best way I cope is I imagine when this hell is all over that I will say to myself thank God I never gave up! It will only make us stronger having been through this! I feel like I’m in a constant dream 24/7, head pressure and constant full ears that pop every time I swallow. I long for the day that this weird head sensation and floaty vision goes! We will get there, we all will! This site has been amazing when you just need to speak to ppl who understand what you are going through! If you ever need to vent I’m here to listen.
Thanks for the kind messsges, it really means a lot to me. I’m struggling so much, physically, and from that, emotionally too; it doesn’t help that I haven’t got any family nearby to ask for help.
One thing I’ve noticed is that I seem to have convinced myself that being active will make me worse, by triggering a migraine. So I seem to have anxiety around that. And in a way I do feel worse and dizzy when I do something, but if I don’t do it, then I become bed bound? Trying to find the balance between doing too little and too much.
I know it’s so so tough and no one truly understands what we are going through! Do you know what triggered your migranes off? Do you have a history of migrane? I never have, mine started when I was 38 weeks pregnant after a terrible virus.
@Natty04 I’ve had dizziness twice, first time post-partum, but “only” for a few months and this time after a wisdom tooth extraction.
I have a history of sick headaches, but only the occasional ones.
How hard it must have been to get this when you were about to give birth, and with a newborn. I remember how much I struggled the first time round when my son was a baby, I was scared to drop him. How have you been in terms of looking after your baby?
It was hurrendous to be honest. I can’t really remember the first two months of his life! I remember that I felt that dizzy I couldn’t even focus on his little finger nails! I also remember my garden gate looked as it was vibrating! I just kept going to bed! Luckily I have an amazing husband who took care of our boys! Although I’m a million times better as I was initially i am left with the spaced out weird vision and head pressure. It feels bruised and Full and I feel the blood pumping if I lean over etc. Do you feel worse outside? How would you describe your dizziness?
That sounds so tough. Really hard to look after a baby like this.
I’ve heard a lot of people describe visual things, but I don’t really get them. Mine is rocking and swaying, as if I’m always on a boat, plus pressure headaches, feeling like my head is very full.
I feel at my worst in busy places and with walls or hedges close to me, I think it confuses my balance.
We all have slightly different and similar symptoms! Mine is more visual. I have heard of ppl getting dizzy after tooth extractions due to the jaw being misaligned! I also have tmj dysfunction but specialist said that this would not cause the dizziness. Do you get visual snow? If I stand outside and look into the distance it always looks like it’s lightly raining.
Hi Lucy, I really empathise with what your going through. I know it’s difficult but try stay strong, optimistic and take every day as it comes you will get there. I’ve had many periods through the years of being well as much as 4 years and remember looking back thinking “I’m so glad I didn’t give up hope.”
Very true, you gotta find the balance. In general, you shouldn’t do things that give you carry over symptoms into the next day. I know its hard to tell. Sometimes it takes a week of experimenting to figure out (like diet) what level of daily physical activity you can handle long term. Of course sometimes its worth overdoing things to feel normal for a day (-:
@ander454 Thank you that’s really useful advice. I’m still going between extremes of doing too much and then too little.
Please to disagree. If you have the type of MAV I have, which causes rotary vertigo and symptoms that can make you bedridden, it’s never worth pushing it that far. It can take days/weeks/months to settle back to any sort of baseline. I once spent 8 days bedridden after 10 minutes in a supermarket (timed) as per VRT therapist’s instructions. Everybody’s different but one needs to know one’s limits at any one time though they do regularly changed. It’s good to keep busy and to do what you can without aggravating symptoms which involves paying attention to what you do and how you do it. For example Most people stand up to prep vegetables but it’s not essential, it can be done seated. I can always look at my Ipad sitting in a chair balancing it on a knee but looking down at it on the dining table often makes me feel bad. Helen
I just wanted to say I have been exactly where you are I think all of us have . I relate to everything your saying I pretty much cried for 4 months straight BUT I am improving and I wanted to tell you please don’t lose hope althought I’m not there yet I do believe 90% of people can get this under control with the right combo of lifestyle changes and meds .
In the meantime has your doctor offered you Valium for when symptoms are at their worst ? Also seeking a therapist massively helped me I was at such a low point and seeing her was a turning point for me.
Just wanted you to know your not alone
My vestibular rehab therapist gave me a guideline. She said to stop whenever any one of my symptoms was 20% worse than when I started. I like to work out at the gym because I can hold on to machines. I learned to slow down or stop when my hand went numb, or when I started feeling much more dizzy than I started, or got nauseous. I’d just keep moving slowly until I felt closer to whatever I had when I walked in (dizzy, usually and/or with head pressure, headaches, that weird feeling like there was an electrical storm in my head). In this way, speeding up and slowing down, I’ve slowly worked my way up to over an hour at a 10 minute mile. It can be done, if you learn where the line is for you and dance along it. Eventually, you’ll find that you can do more than you could before.
One caveat: meds made my life way better. I trialed three before I found one that works. This is a slow process that requires patience, persistence, fortitude and humor. We’re with you.
Thank you @flutters. Good to read how much you’re able to work out
I used to be a very active person, and losing my walking (or at least, walking where I feel well instead of dizzy and unsteady) has also taken away an emotional outlet.
Still struggling, but trying to get through this. I was telling myself yesterday that apart from suicide, which I don’t contemplate, there really is no choice, I’m condemned to live, so I just have to do this.
Trying to figure out how to “do” this now.