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Lightheaded and struggling

I was on the mend for a little while there. All of a sudden I’m back to where I was. The ice-cold vibration runs down my spine again. Now I’m incredibly lightheaded and for two weeks now every time I turn my head or the temperature changes I feel like I could black out at any moment. I’m struggling to be a mum to my three babies. Come dinner time my body is so exhausted and so dizzy that getting off the couch is impossible. I’ve been taking Stemetil for two weeks now to no avail.

Today i I made the call to my neuro because she told me to call if my symptoms got unbearable and she would write me a prescription for something but apparently she’s on holidays for another week. She said I’d need to give up breastfeeding my five-month old. Not what I wanted at all which was why I initially declined the meds.

None of my family or friends truly understand how awful this feels. I get the impression that they think I’m exaggerating. I wish I were. Today I cried - I’m afraid that this is going to be my reality for the rest of my life. Anyone else feeling super over it? How do you cope with the awful lightheadedness?

Hello

Vertigo is horrible. Stemetil doesn’t actually help with the lightheaded symptoms of vertigo - just with the associated nausea. So taking it won’t really do much to help (I know this from experience).

There are exercises you can do to help the vertigo. They actually make you slightly worse before beginning to make you feel better, but they do work.

This is the first (given to me by my physiotherapist): if you sit, preferably holding on to something to keep you stable, hold a pen or similar object up in front of your face and turn your head from side to side, keeping your eyes on the pen for as long as you can. Stop, until you regain your equilibrium, then do the exercise again, trying to keep going for longer this time. (I put the stopwatch on my mobile phone, but also count to keep abreast of how long I’ve been going.)

Repeat the exercise several times a day, the suggestion by my physio was 5 times. Aim to get to 2 minutes. In the very short term it will make you feel worse, but keep doing it and eventually it will help.

An alternative way of doing the same thing: keep your head still and move the pen from side to side, again keeping your eyes on the pen.

Another exercise is to move your head backwards and forwards slowly, again keeping your eyes fixed on a point (say on the wall opposite).

It can also help to slowly move your head from facing as far to the left as possible, then slowly move in down, round to the far right and stop. Do this 10 times.

You could try a mixture of these sorts of exercises, see what helps (if anything). Every exercise you do, make sure you are sitting in a stable way, and if possible holding on to something. Build up from doing a few seconds of an exercise, for longer each time you do it.

In terms of fatigue, it’s a case of resting enough (yes, I know having children, especially a baby, doesn’t help). Try to do things a little at a time, eking out your energy. Have a look at https://www.mstrust.org.uk/a-z/fatigue

I do hope it gets better, living with these symptoms can be truly horrible.

Sue