Feeling ridiculously light-headed, an... - Hughes Syndrome -...

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Feeling ridiculously light-headed, any suggestions?

Hi All

For the last few days (maybe weeks) I have been feeling really light headed. I am in hospital for bloods tomorrow and for an appointment on Thursday (might be with the doctor who called me a hypochondriac!!) so I will ask to get my blood pressure checked... I don't think I am dehydrated - i have been trying to drink loads but I'm not sure what else to try.

I am in work and that involves sitting in front of a computer screen a lot... But i have a monster commute back home later. I feel very tired too, so maybe that's it but sometimes I get so light-headed that it makes me feel sick...

any suggestions or advice would be grand!

Ta Tx

13 Replies

Hi Tasch

Sorry you are feeling like this.

Is it lightheadedness of dizziness?

If the latter then it may be ischemia affecting the inner ear, as was diagnosed for me by Dr. Peter Savundra, a colleague of Prof Hughes.

I have recently been to a balance therapist and she has told me to get up from the computer about every 20 mins and just have a walk around to reorientate my balance systems.

Best wishes.


in reply to Manofmendip

I'm not sure what the difference is to be honest...?

I feel drunk - like my head is spinning - sometimes it takes me some time to get my balance and over the last few days I have been feeling "seasick"...

does that sound familiar to you?

Thanks for your comments


Manofmendip profile image
Manofmendip in reply to

Hi Tasch

Yes it does sound familiar to me and you might consider a referral to Peter Savundra at The Portland Hospital in London. Peter is a Consultant Audio Vestibular Physician, one of only 10 in the country. He is a lovely man, just like Prof Hughes in being a patient centred Dr who listens and talks sense.

Best wishes.

Dave xx

in reply to Manofmendip

who referred you there? Would it be through my APS clinic or Lupus or transplant or do I need to go back through my GP? I hope it's not the latter as I actually live 50 miles out of central London!

Thanks again though


Manofmendip profile image
Manofmendip in reply to

Hi Tasch

Prof Hughes referred me there. he sent a letter and I phoned them for an appointment.

Best wishes.


HI Tasch: If you drive:Try to take different routes home so you don't "put it on automatic". Taking different routes will force your alertness. Also try to play music or an audible book on the way home. Or something you can sing with. If you are in hot, turn on the air. If you are in cool make it cooler. Coolness keeps you awake. (except extremes). That's all I can think of at the moment as far as your drive home goes. Frankly, I wouldn't drive if I was getting dizzy. I wouldn't want to hurt someone else by accident or cause someone else to do so. I hope you are using public commute like a bus or train. Even in public transportation, it could be very dangerous if you were ill while among strangers. Some people would take advantage of that situation and quietly just take your purse with them off the bus or train without getting you help. Not all people are good people and unfortunately we have to protect ourselves.

Be sure to mention it at your appointment tomorrow. Could be a medication change is in order. Could be a whole lot of things. I'd mention it if I were you.

Good luck at your appointment tomorrow.

warm wishes,


in reply to CanaryDiamond10


I'm not sleepy, just very light headed, but yes I will mention it to the docs...



I did think of sugar levels but i go tend to graze so i don' think it's that...

I'm on Clexane so INR shouldn't be an issue...

Maybe salt... I have been drawn to salty foods which i normally reject - i did think it was most likely a low BP...

Thanks for the suggestions...

Of all the pains and other problems, I rate lightheadness right up there if I could pick a symptom to have cured! I've never really found much of a solution, but when out of the house it can cause

Fear which in turn makes it much worse. One thing I do is tell my colleagues. Just say, I'm feeling a bit dizzy is usually enough. If their not friends, and or not sympathetic types - lie a little (I think I'm coming down with something / say you have a heavy period - even non APS women get them) hopefully they will keep an eye on you just a little, enough for you to feel more safe. Sometimes that's just not an option though, in which case I phone my husband or mum, and ask them to call me back in half an hour - not that they can do anything, but I'm less scared that I'll black out somewhere and no one would know.

Also, if your prone to this, be careful taking a different route to normal, make sure someone knows where you are and when you

Should be home. If on public transport, can you chat on the phone with someone? Before mobiles, I use to tell the train conductor I felt a bit rough, and could he make sure I got off at my stop - to be honest now I'm older I'd feel a little daft doing this, but better feeling daft than being in trouble. My last bit of advice for public transport - whatever you do to try and stay alert - plan for it not working. The effort of concentrating to the end of a shift often induces in me a sort of trance when I don't have to think (kind of like your watching life, not in it), the first time this happened to me on a bus I was about 15, and after sitting on a bus for hours as it went round and round the driver assumed I was on drugs and threw me of on a dark country lane - total nightmare. Pre mobiles, I kept a pocket alarm clock - easier now (but I still have one in my bag - force of habit) and set it for 5 minutes before you expect to get off. I hold it in my hand, and most of the time manage to turn it off before the alarm, but it is always there in case so I feel more safe.

Good luck!

Alison: That pocket alarm is a great idea! It will also work to draw attention to you as it is quickly accessible, if kept in hand, and if you did run into unexpected trouble of any sort it would call attention your way. I'd have a medical bracelet on in case I could not communicate.

Tasch: What is most important here, however, is that you shouldn't be getting dizzy or lightheaded. It is your body's danger signal that something is wrong. So tell your GP of your long commute and feeling light-headed. Probably a few blood tests will clear up what could be as dangerous to you as any other symptom. When I was MUCH younger (ah-hem!) I had a Vitamin B12 insufficiency that caused similar symptoms. They gave me weekly Vitamin B12 injections for a long time. I hope your cure is as simple as that!

Warm wishes and good luck today. Please let us know how it went.



Maybe you need glasses? How long has it been since you have had an optician exam? If you are in front of a computer all day for your job you should have your eyes checked yearly.

MaryF profile image

Hi there, hope you get to the bottom of it, and do check out middle ear stuff, as you can have this sort of thing going on and it can be anything from a middle ear infection, to Labyrinthitis or Meniere's disease.. apart from problems caused by the two things you know you have, do feed back what they say. Hope you feel better soon. Mary F x

ps en.wikipedia.org/wiki/Balan...




I know you'll all be shocked but the doctor told me to drink more water...

I discussed some of the suggestions on here with him but he said it was highly unlikely... I mentioned my previous eye issues and he has agreed to send me back to that clinic for a check up - so that's positive... he was one of my transplant doctors - another new one, so not necessarily that hot on autoimmune stuff...?

Otherwise my bloods were better than this time last year! First time that's happened since my transplant! very good news; means I'm not killing Kevin (the kidney) as fast as we thought! Phew...

I have to go to my GP soon and she is great so I might bring it up with her...

Thanks for all the recommendations!

Tx xx

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