Woke up Oct 17 and put head to side/back and had severe spinning(vertigo). This has continued everyday since. Dizzy when standing, but spinning with head movement (mainly back and to the right) when lying in bed. Made me nauseous at first but have no gotten use to it! Is this POTS or just part of high ebv titers and active ebv? Worth getting tilt table test? Thanks for any advice.
Hello.
I've got POTS and ME, so yes I'd advise a TILT test if you have postural tachycardia and other cardinal symptoms. Due to POTS I'm always dizzy and due to ME I always get infections and thus chronically get viral vertigo which is horrible!
Dr Edwards on this thread sensibly recommended some tests and I'd go with these for sure (If you can manage them), however if you can't get out the house, then you can't have the tests. So in the mean time, I was thinking what's helped me, and one of the ideas may be of some use. NB: There are many other reasons, to consider, these are just some I've found useful as a PWME/POTS, which is a very complex problem to manage from day to day.
Number 1
Check your medication isn't causing the vertigo symptom (E.g. key culprits are beta blockers/Lyrica and other epilepsy/pain control meds). If agreed by a doctor, you can sometimes be allowed to stop meds slowly, and then try another variant. If necessary and able (costly) you can try this in hospital if it's a very important medication. Many hospital admissions (A&E/ER) are due to drug reactions, they don't have to be life threatening, but they can be life affecting.
Number 2
Check you drink enough water (many PWME forget to drink or are too weak to drink at least 2L of clear fluids a day). You can also measure the ability of your body to retain water by measuring
ADH (Anti diuretic hormone) and
Aldosterone which can be affected in ME/POTS. This is important to mention, as you can literally pee out the water before you absorb it properly. Sometimes PWME CFS develop Diabetes Insipidus. So look for lots of clear urine. Excessive urine output ( ++ thirst) can also be a sign of
undiagnosed diabetes.
Number 3
Check your blood pressure during dizziness event. Note if you're stressed, your BP will usually be elevated. It's if it's low you want to note, also if it's low despite being anxious or stressed. Note that even with normal BP, PWME/POTS can feel faint. This may be due to reduced blood flow to the brain. (BP cuff is on your arm obviously and unable to measure brain blood flow).
Number 4
Note what you were doing during attack. For example if the vertigo comes off during/after peeing, it can be a neurological condition called
Micturition syncope. I have this can it can cause sudden onset balance loss, even in bed.
When in bed, I pee in bottles and not long after the room is spinning around. Not nice, and it ruins your sleep too. Also in autonomic dysfunction (which I have) I get this randomly when I eat. So you're 'OK', eat the first meal of the day and get really nasty vertigo, simply eating a sandwich. The only thing to try and do, is to eat smaller portions, so you get less blood pooling.
If you notice you only get dizzy/vertigo in episodes when laying down that may be benign paroxsymal postural vertigo (BPPV).
These can occur in lots of conditions, including ME/POTS. Also note if you go dizzy during 'thinking' (PWME report this) and or extensive brain input using a PC/Video games console, you may have symptoms of a
partial seizure. If this happens, immediately stop playing the video game and go sit away from the screen quietly and see if this helps.
Number 5
Checking for possibility of active infection, other than EBV! I found my severe vertigo that hospitalised me to be caused by Parvovirus B19.
Number 6
Measure your IgE levels (unspecific allergy marker).
Number 7
Check you eat enough salt (24hr urine sodium test)
This is particularly important for POTS patients who can have
a low blood volume (also found in CFS - see Dr David Bell's research).
Number 8
Rule out anaemia. Measure B12/Folate/Ferritin. When you're chronically ill, and infected and run down you can get anaemia, even if you're not a vegetarian and eat meat or eat 'well'. (You don't have to be skinny to be anaemic, you can be obese).
Number 9
Make sure you aren't ODing on supplements, so check with blood tests
Check you aren't deficient in vitamins and minerals/nutrients linked to development of dizziness (blood tests)
Make sure you aren't taking supplements with additives or 'patented formulas' you may be intolerant of!
Number 10:
If also Short of breath when dizzy:
Check your oxygen saturation levels with a high quality home Spo2 monitor but ideally in the doctor's office first, if possible.
If dizziness is persistent and unexplained, Ask for an ECG, 24Hr ECG and Electrocardiogram (both non invasive) heart tests, as dizziness can be linked to circulation and heart problems in some cases.
Number 11:
Check your blood sugar with a diabetic home test machine, especially if you're waking up dizzy and hungry/nauseas or you get this between meals.