Dizziness - Sjögren’s related PoTS or vestibular/ETD problem?

[MAT51]

Been having episodes of feeling very sick and dizzy on off - losing my balance again. I wouldn't describe this as vertigo but more like motion sickness. Sometimes when I'm sitting working on my iPad things seem to overwhelm - like heaving on a boat. I often get extra motion sickness when I'm a passenger - more  than I've had for decades now. I even get it sometimes sitting down which is new.

Cradling my neck in a cushion helps a little but then when I stand up and walk the ground seems to move. I have to use a fold out seat stick often or else a cane for my balance. I can only stand still for 20 seconds without this horrible feeling of imminent collapse - nerve pain in my feet, ankles and sometimes,es up my calves into my knees.

But I must say that my legs and feet are full of icy numbness and tingle again, pins and needles from shoulders to finger tips and face is horribly numb and feels contorted and I cup my hands over my face because I crave warmth for the neuralgia in my face and mouth.

Down in the south of England the UK Sjögren's expert whom I saw 2 weeks ago confirmed my Scottish medical team's perspective that my long term neuro problems are probably mostly due to existing damage rather than progression. So the Mycophenolate/ Cellcept at max dose is just viewed as a deterrent against the SFN damage and autonomic dysfunction progressing further. I fear they are progressing though but they all tell me there's no way of knowing. There are no other treatments I will be offered now.  Rituximab and IViG aren't licenced in UK for Sjogren's- nor is it available to seronegative sufferers like me who don't qualify for clinical trials.

IViG has been entirely excluded for UK Sjogren's sufferers here unless things progress to CIDP or GB  - and even then she said it would only be used once or twice before switching to immunosuppression.

But it would at least be good to pin down the new dizziness with intermittent nauseas and whether these relate to my neuro Sjögren's or to something new and vestibular. I took Stemotil/ Prochlororperazine 3 times a day for a few days but had not so great side effects so now take one just last thing at night as I worry about dizzy attacks when I get up in dark to go to toilet. I don't think it did too much for me though. 

My GP says it's not orthostatic hypotension as he tested my BP sitting and standing. Sometimes it feels like syncope rather than just dizziness - I feel I might be sick as I surface from the near black out and nausea continues until I drink tons of water. Any suggestions for what this might be are welcome.

[anita]

It definitely doesn't sound like POTS or any type of orthostatic issues...as you are sitting (at least some of the times) when it happens.

Have you by chance checked your blood sugar level when this happens?  Low (and even high) blood sugar can cause a wide variety of symptoms like you mention.

I would also suggest a cardiac check up (including carotids)...just in case there is a blood flow issue.

[MAT51]

Thanks Anita this is really helpful advice. I will ask for my annual diabetes check and also perhaps buy a kit otc to check my blood sugar glucose levels at these times. I have noticed some changes in how often I need to pee so worth looking at as you say. I had a full cardio work up earlier this year and all was good apart from my BP - which regularly spikes despite my taking Losartan.

I did have a carotid ultrasound in 2015 and the neuro said all was normal for my age. But I have a copy and it wasn't that normal - the scan operator kept asking if I was sure I didn't have diabetes - which I was sure at the time. Every segment has "mildly diseased- plaque" on it. As my mum died from severe atherosclerosis at 73 and my dad died of diabetes related cardiac arrest, also at 73 - I think this needs monitoring. Although if it's hereditary the only treatment is BP meds which I'm on, and statins which I admit I'm really not keen on the thought of at all. I already take 20 prescription pills a day. Still it would help to know the cause because the sitting down aspect is new.