1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

Cause of dizziness?

Posted , 5 users are following.

Scoobydoo65
Scoobydoo65

Hi, I have had M.E. now for 2 years, and my symptoms have increased in number over this time. Recently I have been very lightheaded and I feel as if I am moving when I am not, it definitely feels related related to my head. Could I be developing orthostatic intolerance? Is this a normal symptom of M.E.? x

 

0 likes, 11 replies

11 Replies

  • JulieBadger
    JulieBadger Scoobydoo65

    Posted

    Have you checked your heart rate?  I get light headed and noticed my heart rate is higher than it should be.  I'm particularly lightheaded when my heart rate has just gone way up.  I am having an ECG next week. My doctor is thinking it is something to do with the muscle around the heart.  Something she has come across before as an Autoimmune disease.

    I too have moving and that has been diagnosed as Functional Movement Disorder as I also have limbs moving when I haven't asked them to move or not when I am trying to move. Something to talk to your Gp about I think?

    • Scoobydoo65
      Scoobydoo65 JulieBadger

      Posted

      Thank you very much Julie for this: I will defiitely be going back to my GP now (so many visits - its crazy hey) My muscles twitch as if I am moving, so I will talk to my GP about funcitional movement disorder. An ECG may be a good idea too. So grateful too all on here with wonderful tips- great to be able to go to my GP armed with a little knowledge xx
    • JulieBadger
      JulieBadger Scoobydoo65

      Posted

      It was a Neurologist at the hospital who diagnosed the Functional Movement Disorder he said he was seeing more and more ME/CFS sufferers who have it.  He told me to look at the neurosymptoms.org Movement disorders website.  There seems to be a difference to whether you feel the room is moving or whether you fell like your the one spinning.  I've had a lot of problems recently with medicines making it worse (the ones that a supposed to make it better, Lyrica being on eof them).  If you do have Functional Movement Disorder don't have Bowen Treatment. Within 10mins of having the treatment I then had an hour of two of them guarding me from falling off the massage baed as I had the 'seizure' like symptoms - not good.

      I've got my ECG next week. I bought a finger Biosync pulse oximeter off ebay to check myself.  I've sat here reading my pulse I've gone from 87 then suddenly started to feel lightheaded looked down and watched my heart rate spike up to 100 then down to 92 without even moving myself. Very weird.  I think I might have PoTs which I fear will mean goodbye to my driving licence - really not good as I live in a rural area sad

      If you feel often light headed immediately after standing up might be worth researching PoTs on the internet too. Apparently not all doctors know about it so worth your own research. Good Luckx

    • JulieBadger
      JulieBadger Scoobydoo65

      Posted

      Sorry mentioned a website you can buy things from so it got moderated.

      I bought my own pulse oximeter which alerted me to I might have PoTs as I increase 30 heart beats on standing up within 10mins.  Interestingly I've sat here just reading email suddenly felt lightheaded and noticed my heart rate had suddenly gone from 87 upto 100 then back to 92 whilst I felt yucky.

      The Functional Movement disorder was diagnosed by a Neurologist. He said he is seeing more ME/CFS sufferers with it.  He recommended googling it to learn more about it.  Their is a website named after the disorder which can teach you more. Happy researching x

  • Fidd
    Fidd Scoobydoo65

    Posted

    If you are able to do them, there are some exercises around specifically recommended for diziness (I'm not sure if I'd b able to link to them here, but google should help). There can be lots of different causes for this, and being exhausted will make a number of them more problematic, but some of these exercxises can help 'train your brain' to deal with the symptoms more effectively.
  • olivia3636
    olivia3636 Scoobydoo65

    Posted

    Yes, dizziness in my case is very normal. I've read some articles as to why that is in ME patients, but there are no definitive answers. My doctors and I thought I could have an orthostatic intolerance, but that's not it. The dizziness progressed into muscle pain and weakness, more than just fatigue. I've had ME for 6 years and I'm 19. I got my heart checked out two years ago and it is 100% healthy. So nothing wrong there. I'm just now getting more in depth tests done on neurotransmitters and electrolytes. My doctor thinks my fatigue, muscle pain, and low energy are due to an electrolyte imbalance. I would suggest trying to drink half of a pedia lite a day. It should help make you feel not so dizzy. It will increase your blood volume. I would also suggest getting your magnesium and potassium checked. You may have some salt wasting. If you can't get your hands on pedia lite, Gatorade is good for the mean while, but I would get the G2 version because regular gatoeiade has a lot of sugar in it. The pedia lite also has prebiotics in it, so it will help with digestion as all. Do you have a low body temperature? Also, if you do think you have some kind of orthostatic intolerance you could have POTS(postural orthostaric tachycardia ssyndrome) or some form of vasovagal(not quite sure how to spell it). I would suggest going to a cardiologist and get some routine tests done to make sure your heart is healthy. 
    • Scoobydoo65
      Scoobydoo65 olivia3636

      Posted

      Thank you so much for this Olivia: I do have a low body temperature-checked yesterday at 34.1 (orally) and we have a family history of heart disease so I wll hot foot it to my GP for some checks. Thanks too for the tip about the pedialite -you may well be right about salt wasting, and I like the idea that it has prebiotics in also - very handy xx
  • olivia3636
    olivia3636 Scoobydoo65

    Posted

    One of the articles about ME patients and dizziness, post exercise malaise, muscle pain(including chest pain), is that when we exercise or go up a flight of stairs, stand up, anything that gets your heart having to pump more blood out(especially through the left ventricle) our hearts pump less blood out through the left ventricle when it should be pumping more. Implying there's something wrong with myocardium or the neurotransmitters telling it to pump more blood. Whatever the reason, we get dizzy simply because our hearts are not pumping enough blood out. I am dizzy ALL the time. When I stand up, sit down, laying down. I feel like I'm moving when I'm not as well. Try ttostand up slowly or walk up stairs slowly. I've passed out quite a few times and I've hit my head badly. So please be careful. I would also recommended only doing very light evercise, like a walk or maybe something like yoga. Nothing too harsh, because it will exhaust you. It took me a very long time to figure out that I can not exercise, only do light activity. Good luck smile
    • Scoobydoo65
      Scoobydoo65 olivia3636

      Posted

      Thank you again for your tips. I'm sorry that you've got awful dizziness and have experienced passing out and hurting your head quite badly- that must be very frightening xx

      .

  • joy47826
    joy47826 Scoobydoo65

    Posted

    I have a friend who is challenged with ME and like me takes grape seed extract....do a google of grape seed ex and vertigo etc.....and in general grape seed ex is a great antioxidant....

    She works SO MUCH and has a great chiro who muscle tests all her supplements, so she is thankful for that great helper.

    I know she takes desiccated thryoid as do I.

    She thinks her big issue is Mercury poisoning and is now working with a homeopathic for removing mercury, taking a low low dose as she detoxes so much with about all she trys......J 

    • Scoobydoo65
      Scoobydoo65 joy47826

      Posted

      Thank you Joy for replying: this is very interesting. I'll investigate the grape seed extract and vertigo and mercury posioning -this is something I have been meaning to get around to doing - get my amalgams removed etc.Hopefully one day all will be well again. We can live in hope hey :-) xx
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.