I haven’t been online for a long time as I was really well. In fact I have been pretty well for about a year!! I would still have the odd symptom, for example I might feel like I suddenly jolted forwards or the floor would tilt but it was pretty minimal.
Anyway, lately I haven’t been too sensible. I’ve been eating chocolate, drinking coffee etc and well… I’ve crashed
I had one bad patch around December last year, it lasted about 2 weeks I think. This has freaked me out a little as I had forgotten how rotten this is. I am a patient of Dr. Silver’s and I’m due to see him next month. Could do with just a little chat with people who know and understand this annoying condition.
When I’m like this I start to get anxious, I go online and I read up on things to try and help me calm down but some things I read leave me with more questions! Most sites, not this one, refer to MAV as episodic, they talk about vertigo/dizzy attacks lasting up to 24 hours. When it hits, there isn’t a second in the day when I feel balanced. I am literally rocking/swaying 24/7. I’m forcing myself in to work, I’m a teacher, I don’t know how I’ve managed this week but I can’t afford to be off again with this. I guess I’m just wanting to hear that this sounds ‘normal’ . Part of me knows it is, but those anxious thoughts creep in and I start to think that I must have something different… I can’t honestly feel this bad… It’s not even dizzy… It’s worse… It’s ‘swirly’ constantly plus I feel like my whole body is like a washing machine!!
I also worry that being at work is going to make this much worse, maybe kicking me in to being like this forever I.e will this be my new baseline??? I met a lovely friend on here and she has been very supportive, but when I’m here… Still swirling, I start to worry again. Grrrrrrrr.
I can totally relate to everything you’re saying. I have never been well enough to say I feel anything like normal but I did feel slightly better when I had 6 months off from teaching. Since returning in September I have slid gradually further down hill until I am really struggling, mainly with lack of balance and unsteadiness. But I wouldn’t say that it’s the work per se, as much as pushing myself too hard, allowing myself to get stressed, not sleeping enough and then, exactly as you have described, getting anxious that this is how it is always going to be from now on. Anxiety makes this thing so much worse as we all know, and sometimes you might not even know you’re anxious, just feeling tense, wound up, not breathing deeply enough etc maybe overreacting to sensations that you might previously ignored. Sound familiar? Dr S has referred me for CBT to try and remove the anxiety from the loop so I really hope that helps. Is there anything like that you could try or relaxation exercises? Try not to think the worst. We are both just going through a bad patch and have to hold on to the memories of when we were feeling more normal and trust that we will again soon.
Hi Nicola, thanks for responding I have had cbt in the past and I am able to reign in the anxiety somewhat. However, when I’m standing in class and suddenly the room jolts forward it’s hard not to pAnic!!!
That type of thing is happening quite a bit, if it were just that I could cope I think. I mean… That’s not constant. It’s this constant state of feeling like I’m swaying/rocking inside is driving me crazy. I guess I’ve come online again as I just need to hear that this sensation is normal. I’m seeking reassurance I guess… I keep worrying that what I’m
experiencing is not normal with MAV!
I read somewhere that somebody thought they had menieres because they didn’t notice any movement when driving. I’m ok when I’m driving, in fact I’m thinking of going for a drive to give me a break from the rocking!!! When I’m moving things are slightly better as I can’t notice the rocking sensation as much. I mean, it’s still pretty bad but not quite as bad as when I’m standing/sitting still. I just wondered why this person equated being ok with driving to menieres??? Is being ok driving/being on the move a sign that it’s not MAV??? Sorry if that’s a really daft question haha… I’m just not sure what that person was getting at. I know very little about menieres. Arghhhh… so many questions!!!
Sorry guys, I’ve rambled! On a positive note, I use the Gammacore device, It’s a non-invasive vagus nerve stimulator (google it!)I would just like to say that I have found it to be very effective for migraine headache. I would not be without it. I have only used it sporadically, when I sense a migraine headache coming on and I must say it definitely prevents me from developing a full blown migraine. Just thought i would mention it.
Nicola it’s so hard isn’t it… An invisible illness. I’ve said to a few of my colleagues how rotten I feel but they can’t begin to understand and I’m pretty sure some think I’m making it up haha! I look perfectly fine, inside I’m a wreck!!!
I have had the rocking 24/7 to some extent or other every few seconds since May2011 and cannot remember stillness at all so yes, to me it is now normal. I also look fine and it is maddening how invisible this is. I also feel fine when in the car, I think most people do, the real motion seems to override the false quite well as long as it’s not too violent or unpredictable.please don’t start doubting your diagnosis, however tempting that might be at times, this crappy illness never ceases to surprise me and we’ve just got to try and roll with it and keep as positive as we can. At least you know that you canbe better, so there no reason to think that it won’t happen again soon.
Hi, I have mav and when I go or drive a car I’m worse as because I get loads or should I saw 24/7 all like eye lag problems which makes me feel very ill. This is worse in car as the roads and car journey is bumpy and this aggravates the situation. I’m going mad I just don’t know what to do…
I’m on pizotifen and about to start Effexor. In the past I have tried topamax, gabapentin, nortriptyline, amytriptyline and propranolol. Waste of time. I don’t have any headache. How about you?
Oh dear What dosage of propranolol where you on ? I’m on 240mg, according to Dr. Silver it’s pretty important to get up to the highest tolerated dose. I’ve actually been a bit rubbish at taking my meds and would often just take 160mg, I guess that could explain the ‘crash’. I really hope that you find something to relieve your symptoms.
I’m back to see Dr.Silver soon, I’m hoping and praying I’m starting to feel better by then. It’s so exhausting feeling like this.
Hi, I have mav and when I go or drive a car I’m worse as because I get loads or should I saw 24/7 all like eye lag problems which makes me feel very ill. This is worse in car as the roads and car journey is bumpy and this aggravates the situation. I’m going mad I just don’t know what to do…
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I hope things improve for you, it’s so debilitating. What are your symptoms when you’re not in the car? Do you have the rocking sensation?
I’m on pizotifen and about to start Effexor. In the past I have tried topamax, gabapentin, nortriptyline, amytriptyline and propranolol. Waste of time. I don’t have any headache. How about you?
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I do get migraine headaches as well. Although using the Gammacore device definitely takes the edge off the pain. I can cope with the headaches as they don’t generally escalate in to me being in bed for 2 days now. I would take a migraine headache over the constant rocking! Pre Gammacore the migraines were horrific, but at least, for me, they only lasted at most a few days x
I took 240mg propranolol for about 10 months but it didn’t touch the rocking. pizotifen/ sandomigran is the only thing that made it fade into the background a little. It used to drive me crazy. Have you tried that?
I haven’t. I have a list of meds that Dr Silver has suggested. Propranolol worked… For a year!!!
I’m silly, I started eating chocolate, drinking fizzy drinks and coffee… I think that may be the reason I’ve relapsed. Plus I’ve been working too much… Grrrr. X
Try to take it as easy as you can. dr surinthuran says that developing a balance disorder is often the brain’s way of forcing you to slow down. He recommended that I work only 4 days with Weds at home to recover and this year I am non class based which has reduced my workload so that I can relax at weekends instead of spending the whole time planning. Is there any way you could reduce yours? Try to be as kind to yourself as you are to others. take care x
So to confirm, the gammacore doesn’t help with the MAV (aka the dizziness/rocking) but only helps with the head pain (the classic headache/migraine aka head pain)?
You’ve resurrected a fairly old discussion (dated November, 2014). It’s not likely that those participants are still active here - people tend to get better and stop visiting this forum. But perhaps one of our current participants will see your question and be able to reply.
Hi I haven’t been on here in years… just received an e mail about this thread so thought I’d chip in.
Got to say I’m pretty well now and don’t even have to take any medication. Thinking back to what I was like it’s pretty unbelievable. The gammacore worked well for me although I can’t be sure if it helped with the rocking sensation. I was also on a heavy dose (240mg) of propranolol so hard to say what ‘fixed’ me. Migraine headache/ vertigo… all part and parcel of the same thing so maybe it was a combination of the two.
I think a lot of it with me was the anxiety surrounding what was happening. That fuelled the whole issue, i would say it definitely exacerbated the dizziness. I can still have off days, especially if I drink too much wine, don’t get enough sleep etc but it’s nothing like I was.
For those of you still suffering with this, stay positive, it gets better.
I have had cbt in the past and I am able to reign in the anxiety somewhat. However, when I’m standing in class and suddenly the room jolts forward it’s hard not to pAnic!!!