Not a fun topic but

I am under stress nearly every hour of the day and the 24/7 dizziness means I cry at least twice per day…do you think this level of stress is going to exert long term effects and any tips for controlling it?? Xx

Oh Lizzie sending you a hug. Do you feel under stress because of the dizziness or other things as well? Are you still taking the beta blockers and the antibiotics? xx

You sound like me, about 6 months ago (the anxiety and the crying)…and it’s much better now. As a high school teacher of 150-100 students as well as department chairperson, the stress is constant so I’ve really worked hard at not letting things affect me as much and maintaining an inner calm no matter what (my health is first). For instance, last year I worried and worked for days on preparing for the observation based on the ridiculous teacher evaluation system currently in place. This year I barely worried and worked way less on the lesson…it’s tomorrow morning and I think it’ll be OK as is. It’s not just my perspective that’s changed, I’m also taking Cymbalta and seeing the physical therapist twice a week (my spasmic back and neck are slowly getting better).

Make your wellbeing a priority and find the right meds to help. It will get better (until it doesn’t and then it will again). xoxoxo

p.s. Vitamins too…

Thanks Jem!!! A few additional stresses but the usual…it’s just this blinking 24/7 dizziness, it’s driving me absolutely crackers!! I can barely do anything! I’m largely bloody housebound! One of my bros is skiing, the other on holiday in Thailand and my sis has a trip to Kenya booked and just got a promotion in fashion! I used to be do busy and so active and this think has just knocked me for 6. I feel so ill too. I cry every single day, sometimes all day! I just can’t get used to this new life. On the strong antibiotics now, quit the propranolol as it didn’t help. How are u? Xx

Thank u vandaml… I wish I had ur strength to maintain calmness! Xx

Lizzie, I crried every day for the first year I had this. I would burst into tears all the time. I remember sitting at my desk hiding from colleagues as I didn’t want them to see me crying. I would walk into town at lunchtime for a sandwich feeling dreadful and crying to myself. I felt like a shell with no life anymore. I wished I could go to sleep and never wake up. It was only when I gave up my job that things got easier and my mental state improved. Are you still working full time? That could be a big factor in the continuing stress…

Sorry the beta blocker didn’t work out. I suppose you need to get your antibiotic treatment sorted before you trial more migraine meds.

I know about the missing out on stuff too. I haven’t been on a holiday since this started. I suppose I could have tried it but I am scared of making things worse and then I think it could be a waste of money if I don’t feel 100%. I am still on the nori, been doing okay but crappy today as that time of the month. It’s not easy is it but I know how you feel! xx

Hi Lizzie,

You sound exactly like me I could have written that post myself. As far as having long term effects on our health- yeah, it might- but honestly try not to worry about what might or might not hurt your health in the long run- we have too many problems in the present. All you can do is the best you can do each day with this. I am not one to really be talking but if you can, try to get out of the house every day and do something- even a short walk, a trip to the drug store, etc. can help your mental state. I hear you about the siblings- my sisters are both doing amazing things and I am stuck at home with this problem- it is sooooo hard not to get upset about it. To be honest I basically shield myself from hearing most of it and I refuse to go on facebook- talk about shooting yourself in the foot. I know isolating myself like this isn’t the “right” thing to be doing but it does shield me from feeling more pain than I am already feeling. You have to do what makes you feel best.

Hi Lizzie

I know exactly how you feel and I am so sorry you are feeling this way. I could have written the post myself. At the moment my day consists of waking up, immediately worrying about how bad my dizziness is, trying to move around to get ready for work feeling dizzy and off balance, painting on a fake smile and making myself “look normal” to the rest of the world, feeling dizzy all day at work and ducking into the bathroom to cry every now and then when it all gets too hard. Then I go home and feel like im slowly killing my poor husband’s sanity with talk of dizziness, meds, how I just want to get better, crying inbetween. I listen to him talk about wanting to finally go on a holiday one day soon (like all other friends our age) but I’m too scared and unwell to fly and travel with this. I log on Facebook and see all the posts of my friends around the world. deciding on how many cocktails to drink in Bali or Thailand, while my biggest decision of the night is whether to increase my Topamax by 12.5mg whilst hoping I get through another night vertigo free. I also deleted myself off facebook the other day. I know it sound jealous and pathetic but it just wasn’t helping looking at all the things I felt I was missing out on.

Lizzie, I feel exactly the same. Honestly. Unfortunately we are all in a dark tunnel at the moment and the only way to get through it is to keep going. Some days (most days lately) I wonder how to keep going but we have to try to stay positive some how and find peace in the small things that make us happy (even though we want the big things right away!!) Even though you are stuck at home are you involving yourself in anything you enjoy eg a good book, box set series, time with animals etc? I know it sounds pathetic when compared to what everyone else around you is doing but I find I need to keep myself quite busy when I am home otherwise I just get so down. I am battling against that myself at the moment. My animals actually bring me so much joy and sanity when I can’t do much at home! It’s hard when your friends are all heading out on the town and you wish you felt well enough (I often think I’d give anything for one ‘carefree, dizzy free night.’ But…I try to tell myself it’s not forever. It’s just right now. Even if I don’t believe it on my down days, I keep repeating it in my head like a mantra!

Also, you are on the antibiotic treatment. Try really hard to not think about how you feel now as ‘forever.’ You are on a treatment plan. You don’t feel like you are getting anywhere right now but you will, I am sure of it. You just need time and the right meds.

We are all here with you! Just wish we all lived closer!

Wow thank u so much guys. I’m so relieved you can all relate, even though it’s a tragedy to hear of other young people in this state. I agree it’s so important to try to get distracted. I have a little dog so he is a reason to go out every day, and I do, even if at times it’s so hard. I worry about my husband as well, he’s luckily completely amazing and so caring but it just feels so unfair that his life is being blighted too!! He read me a quote yesterday ‘time heals almost everything, just give the time some time’…that helped a little!! I can relate so much to faking being ok and crying alone…it’s tough tough going. I just wish we had a timescale on how long this will drag on…I think I could hack it if I could see an end date!!! Lol. Thanks again all so much. Xx

no facebook under any circumstances- don’t even think about it (as I remind myself).

p.s. how i wish that we all lived in the same place and could all get together and have fun- we could have our own very exclusive dizzy events, and have a life again because we are being social!!! we could then post a million pics of our events on fb for all to see lol!

Hey,

I wish there was a way to meet up in cyberspace so all of us around the globe could just meet for 5 minutes and give each other a hug! We’re all over different parts of the globe and yet we all seem to feel exactly the same. In a way, it’s kind of comforting to know I’m not the only one who cries twice a day, whose first thought in the morning is ‘ok, how dizzy am I today?’, who counts it an amazing feat if I haven’t cried at my desk once in a day, (I cry myself home from work at least once a week), and whose last thought before sleep is ‘ok what dose of Topirimate shall I go for tomorrow?’

I didn’t do all this as much last year when I felt a lot better, but since my relapse, I’m left feeling hopeless.

Stress is something I’ve been thinking about a lot. I also think it’s important to look at stress deeply as it’s easy to say ‘oh no I’m not stressed’ - it’s easy to think you’re not stressed but not realise you are. Are you on edge a lot of the time? Do you feel you’re sat on teh edge waiting for something? Is your adrenaline up? Like you’re ready to fight something? Fight or flight type scenario?
I don’t feel I am particular stressed in my job, but it’s live TV, my counsellor pointed out that I sit at my desk every day, waiting to react to the problems that it throughs up. I’m pumped, full of nervous energy. It’s completely the opposite to relaxing on holiday. When I feel 100% fine…

Which brings me to my next point, girls, some of you say you’re too scared to go on holiday. I understand why. You don’t want to go and feel shit. And have wasted money too. But I would urge you to think about it again. You might find you actually feel a lot better. I put off going away for over a year. But when I did, I found I felt so much better. There were a few wobbles to begin with, but after, it was great.
Since then I’ve had weekends away in Paris and other places in the UK where I’ve had dizzy attacks- I had one only last weekend- but I think, I was going to feel lke crap at home or I could feel like crap in a lovely hotel with my lovely boyfriend who understand all this malarkey. I’d rather pick to feel shit in a nice hotel! But I know it’s hard.
But sometimes if you push yourself into places and situations you’re not sure of, you’ll be pleasantly surprised.
Not always- but sometimes it’s good to find out.

If I win the lottery ever, I promise to send us all on a holiday somewhere lovely and relaxing.

xx
P.S Facebook is an arse. I have been being good lately, but I have in the past used it to go off on huge rants about people not appreciating just being non-dizzy- if someone is whinging about the smallest thing. Or use it to rant about the friends who ditched me since I became ill.
It also hurts to see 100s of people getting engaged, and becoming pregnant, while I rapidly approach 30 and can’t even think about milestones like that while I’m still wobbling around…
Maybe we should all add each other, and then at least we have fellow dizzies on there who won’t piss each other off :slight_smile: Warning-Dizzie Lizzie posts pictures of lovely fireplaces and cushions with dogs on which may make you jealous!

I feel the same way too! Wake up, worry about how dizzy I am, wobble from bed to couch and back again- watching the world go by. Even at my sickest in the past (with my bppv and chiari malformation surgery recovery) I always saw light (ie. slightly better every day), now I see nothing but the same- so I can totally relate. Although the funny thing is I actually find It helps to cry, especially if I get myself worked up a bit then I actually feel calm and relaxed for a short time after. So in some ways I actually force myself to cry and freak out, hmm probably not the bet coping technique but whatever haha… :smiley:

Have you tried counseling? My back ground is psychology and I used to even work the suicide line, so I’m a big advocate for people seeking help. I’ve found a counsellor who I can talk to over the phone, can’t really say its helping that much, but it’s still nice to give my family a break and have someone else listen and help with coping techniques. Do you take anything for anxiety? I have Xanax and Valium and I will take neither, I find that they make me more dizzy which causes my anxiety to escalate, and then I crash into a fitful sleep and wake up feeling worse off, so right now im not taking anything for anxiety, but I have heard good things about Ativan, so I might ask for that as I think I just need something once in awhile to take the edge off.

I had to smile when I read the posts about fb! Sometimes I want to fling my iPad across the room after scanning through another person’s pregnancy bump pictures, another’s winter holiday picture and another’s status update about the wonderful night out with the girls they had, ahhhhhhhhh! So funny!

One thing I’m trying to do is despite this is to feel grateful for things. Even in th situation we are in we all still have things to feel grateful for. Remember when we were “healthy” I bet none of us ever thought to be grateful for balance, so I’m trying to focus on things to be grateful for right now: family, pets, sunshine, ability to feed myself, chew/taste food, go to the bathroom on my own, my iPad, the list really can go on and on, but you get my point. I remember reading a quote from Christopher reeve (he was paralyzed in a riding accident), about how we need to focus on the good or else the bad will drag us down.

Let’s hope there’s some relief for all of us!!!

Omg Ellen that could be me. I get soooo angry seeing all my fb friends out on the town etc, jealousy kills me at times!!! Mm-thanks! My fireplace and my pillows and my dog are my small saviours! Lol. Oh and tv and books! I’m also going to do an online course while I’m stuck at home, relief MUST come!!! Xxxx

Lizzie,
Do you take any medications at all, besides the antibiotics and recent beta blocker cessation? Having a chronic illness, and that it is migraine related, both point to a lowered serotonin level. That means helpless, hopelessness…fear…sadness…anxiety…insomnia and all that crappy stuff :frowning: I have been there and life was hardly worth living. Getting on some sero increasing medications I believe will really help. (I’m sorry if you have already had a history of trying these meds and I’m not up to date)
Kelley

Thanks Kelley…no I don’t take anything else, only valium (2mg) v occasionally when the anxiety gets really really bad…otherwise nothing else. I am giving the antibiotics a proper chance and just trying to sit tight for a couple of months.xx