Please can anyone help? I have been recently diagnosed with MAV but am going out of my mind with worry that I’m not ‘typical’ and therefore that I’ve been misdiagnosed and something far more serious is going on. It’s a longish story but I wanted to not forget any details:
On November 26th I experienced a strange ‘dizzy’ spell unlike anything I’d experienced before. I’d previously been in good health other than gallstones (soon to be removed) and an ovarian cyst which has since resolved itself.
Standing at the sink I suddenly realised the world looked ‘funny’ – not moving/spinning/whirling as in vertigo but as if I was slightly dizzy – and I felt faint. It came on suddenly like a normal fainting feeling but didn’t seem to progress to a full faint so I decided I needed to sit down. Over the next hour or so the symptoms continued – sitting down didn’t seem to alleviate it like a normal faint. I also felt v sleepy and with a strange sense of pressure behind my nose. Later on I had some diarrhea (sorry! but want to be honest). After a couple of hours I felt better. The only other abnormality in the days leading up to this was what I thought was a sinus headache a few days previously: strange for me as I either get migraines (not so much in recent years but chronically as a teenager and recurring sporadically since then) or nothing and this wasn’t my usual migraine with aura/vomiting.
The next day, I had a similar feeling. This time, safe in the knowledge I wouldn’t faint, I carried on as normal and it went away.
Over the next two days I felt more tired than normal but not faint or dizzy. On returning to work on the Monday I had a similar dizzy feeling in the morning but felt a bit better after eating breakfast/sitting down. Over the course of the week I felt extremely tired, as if I was coming down with something, but didn’t. I had a vague sore throat but it never amounted to anything. By the weekend I felt nauseous, weak, still tired and had developed a general sense of disequilibrium – like the world was off kilter. I said ‘I’m so tired I can’t even see straight’ but I wasn’t actually experiencing any vision problems. I could still focus etc. It was just like the world didn’t look right. Off my food, I was very thirsty. I noticed that if I sat down/still the symptoms felt better.
The same feeling continued for the next week. I would feel particularly awful on leaving the house in the morning – hot, clammy, weak legged, nauseous - and one day fainted on the way to work. Being in busy situations like restaurants or busy streets seemed to make it ten times worse – as if I couldn’t take in everything that was going on. I took a day off to rest and felt a bit better the next day, only to have another strange dizzy/lightheaded/nauseous/tired episode the day after that.
I took the next week off to try to recover but the symptoms kept coming and going. Nausea was the worst symptom, but it didn’t seem related to eating, more to moving around. My legs ached like I had the flu but felt better when I moved around/walked. The pressure sensation I’d felt on that first day was now coming and going in very intense spells, between my ears and sometimes down under my ears, as if I was swimming underwater or flying in a plane. The GP put it all down to labyrinthitis and said it would go away so I tried to continue as normal, again noting that movement made the nausea worse. Stemitil didn’t help.
Some days I would feel OK, others not. When I felt nauseous I would feel weak and want to sit down/not move. At one stage it got worse again, seeming to coincide with a sore throat, but again this went away without amounting to anything. Sometimes I would get a headache, not my usual migraine again, but very painful and one sided, sometimes travelling far back in my head and around my ear to the base of my head. The nausea was worst in the mornings – sometimes I’d wake in the middle of the night with it.
A few weeks later the nausea was easing and I had no more bad headaches – the occasional twinge - but had severe loss of appetite and was beginning to feel extremely anxious about what was causing my symptoms. Occasionally I’d get the weird dizzy spell again – usually standing up though once sitting down. This time the GP referred me to a nuero-otologist. I was by now very very anxious too – mostly fearing MS as I’d read that this could be a cause non-vertigo dizziness and having been referred to a neurologist 6 years ago with weird fleeting peripheral neuropathy symptoms (but having had a normal neurological examination and MRI scan of my brain) I became very very anxious that the two episodes were connected. Two doctors and the neuro otologist said they weren’t.
The neuro otologist took my history and did a variety of tests, including VNG which showed no problem with my brain, and very confidently diagnosed me with migraine related dizziness/balance dysfunction and prescribed me one month of propranolol and physiotherapy. I begged for a neuro consult and mri to confirm diagnosis and she agreed to the mri (my gp agreed to the neuro consult which I’m still yet to have - something which terrifies me.). The MRI was normal apart from a mildly enlarged pituitary gland, which I’ve since remembered was found on the original MRI six years ago but discounted as a mere symptom of stress and anxiety.
Now my symptoms are this: the occasional twinge of a headache but no proper headache, nausea first thing in the morning, an appetite that comes and goes, sometimes my legs ache terribly still as if I have a virus/flu – particularly sitting at my desk or lying in bed - and the worst of all: the feeling I’m going to faint when I get up in the morning/on the way to work, with a dry mouth and nausea. This is made a little better if I force myself to eat something as soon as I get up in the morning but this hasn’t stopped it altogether. I usually feel faint as I near the station but by the time I stand still on the platform/sit on the train, I can avert actually fainting. Sometimes this is followed by a more severe sense of disequilibrium/terrible pressure in my head, other times not. The general sense of disequilibrium seems to fading but can sometimes come back out of nowhere particularly if I move around a lot e.g. cooking dinner. Sometimes I feel very weak and shaky legged too. I never feel well. Not tired/sleepy but weak and achy and off colour.
The propranalol has also resulted in insomnia so I never sleep for more than three hours a night which I’m sure isn’t helping. I’m concerned I seem to have two types of dizziness going on – dizziness and then near fainting - and so it can’t be MAV. And that the diarrhea, achy legs etc all don’t seem to fit either.
Please please can anyone shed any light. I’m desperate.
I’d have trouble following the advice of a doctor I wasn’t confident about, though. Meanwhile, i’m sorry you feel like poop and hope you get to feeling better.