Wierd symptoms

Good morning and happy New Year.

I would really apporeciate some advice and I will try and describe some wierd symptoms that are happening to me, so much sometimes I am wondering if I am going mad.

My biggest problem is that someties I feel really dizzy and lightheaded. Most of the time it is happening when i am in the car, primarily driving. Not to the point of fainting, but have funny sensations of feeling hot and then very cold. Also have the weired feeling of feeling the blood running round my body. Sometimes the only way I can describe it is like an adrenaline run. Thought in the summer it was panic attacks about driving and even went to see a hypnotherapist. But this is still happening and is really strting to worry and upset me. Always worse when I am flaring as I am at the moment. Have decided that I am seeing my GP next week and am going to try and describe it to him as best as I can.

Also suffer with Joint Hypermobility and reynaulds. I also have a leaking heart valve, but heart has been checked recently and is OK.

Hope that the above makes sense and I would love any feedback/advice etc.


J xx

20 Replies

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  • Hi,

    The sensation in/around your nose could be sinus reactions. They can play up with many different conditions. Can create strange sensations.

    Just a thought as I suffer with when having bad time.


  • Thanks for this, however it is not in my sinus area. It sometimes feel like there are lots of giant butterflies in my stomach - if that makes sense.!!

  • I have recently been diagnosed with UCTD having had a few years of strange symptoms such as Reynauds, dry eyes and GORD. Yes, I experience exactly the same unpleasant lightheaded and dizzy symptoms and never seem to be a 'normal' temperature; I am often really cold or unpleasantly hot. Mine, too, were so debilitating when I was driving that I developed a fear of driving by myself and began having panic attacks. I had CBT to try to control the feelings and it has been much better.

    You are not alone and I do hope that you find a way to alleviate your anxiety.


  • Oh my God, thank you so much for your reply. You have described it to a tee and it is great to know I am not going round the bend. xx

  • Hi Tjperfick, I get the dizzy, lightheadedeness symptoms you describe when I drive over bridges with open sides!. Thought it was vertigo and avoid them!. Feel better that I'm not the only one as have felt foolish about it!. Haven't solved it but hope I've helped you?.X

  • You have really helped and I have decided that I am going to see the GP on Monday and try and get to the bottom of it once and for all this time. Thanks again xxx

  • Hi Typerfick

    Good luck for seeing your GP. Let us know how you get on. X

  • Hello Tjperfick,

    Tell your GP you are not alone - we all know what you mean! I thought your description was very good. When it happens to me when driving I slow the car down then try 10 deep but relaxed breathes and relax my shoulders and jaw. It helps me return to normal (ha ha) and feel in control of things again. If this fails pull in somewhere safe and try again. Be accutely aware of your body temperature and use your car system to keep it even. When it's gone I try smiling for 10 minutes. Mad, but makes you feel a whole lot better! Good luck!

  • Thanks for this, I make sure I have favourite music on and talk to myself - am sure that other motorists think I'm mad! Temperature wise, a few weeks ago It was so cold I had to scrape the car, but then drove to work with the ir con. Always find I need fresh air. It is so nice to know I am not alone. xx J

  • Hi there. I'm another sufferer from the "is it vertigo?" syndrome. Your description fits exactly. My doc gave me cyclizine in case it was labyrinthitis, an infection of the inner ear which causes this type of symptom. For a while it helped but has come back with a vengeance at the moment. You really do need to chat to your GP about this as there are so many things it could be. Good luck. Best Wishes, Stephen.

  • Thanks, yeah about 10 years ago when it first happened I was treated for labyrinthitis, but it wasn't that. Only now when I think about it I had my lupus rash at the time and was eventually put down to a virus. ( wasn't diagnosed at that point)

    Have noticed a pattern that I always feel off kilter when I am flaring. Could be nice to know that it is lupus related and not something else to need treatment for, but then again everything seems to be lupus related at the moment. Thanks for your reply, am seeing GP on monday and will let you know how I get on.


  • I have also developed vertigo which I though was connected to my varifocal glasses but I now believe is part of my general autoimmune problem. I also suffer from extreme temperature swings (though mainly feeling extremely cold, except at night, when I wake up boiling) and sometimes wonder if I am safe to drive. It is reassuring to read that others have similar symptoms and that this could all be part of the autoimmune problem. I feel as if I experience everything more extremely than "normal" people: height, distance, light, heat, cold, everything in fact. Lights are really problematic for me at the moment: I absolutely cannot bear the artificial blue lights that are around at Christmas or the creepy blue, green and pink lights at Heathrow airport, they make me feel physically ill. I can hardly bear to drive any more because of all the creepy blue-tinged lights modern cars have, often on during broad daylight. At work they have installed energy-saving lights and I can no longer use the Senior Common Room or bear to walk down the corridors, which have these creepy lights. I have tred to tell my husband about this, but he thinks I am unhinged, so I have kept it to myself until now. I'd be interested to know if others feel the same.

  • Hi Bitternwatcher

    There is the light sensitive support group Eclipse attached to Lupus uk which you might find helpful. Have a look at their website if your interested. X

  • Thank you for this misty14.

  • I am really pleased that I took the plunge and posted about this - feel better knowing that I am not 'flaky' as I jokingly call myself.

    I too notice the lights on the newer cars more(LED I think they are) and my husband jokingly saus that we live in cave as I much prefer subdued side lights and lamps than blaring overhead lights. I am lucky in work that I have had my office lights changed to have the bulbs removed over me and I have a desk lamp.

    Thanks to all that have posted and will keep you all updated. Many, many thanks

    Julie xx

  • I'm so glad you posted this! I have the same thing happen to me and I hate it when I am driving. I go very lightheaded and sometimes it is as if my left arm no longer belongs to me, my hands go very cold and it feels very odd and I am scared I might pass out (I havent).

    I seem to be blue to stop it by tensing my leg muscles and opening the window - and yes I talk to myself too!!! Putting a cold hand on my neck also helps!

    I have asked 2 different doctors over the years but they havent come up with anything apart from a possible drop in blood pressure.

    Shelly x

  • I too am very glad I posted it as well. Everything you have described is as exactly how I feel. I will let you know if I get any help next week. Take care.xxx

  • Just an update, saw GP this morning and have, at the hospitals instructions been put on steriods until I have my review in Feb (background history, started Azathiprine in early Nov and could not tolerate it all, very sick all day)

    The Gp listened to my concerns and just said that hopefully the steroids may help, so I will give it a go and let you all know.

    Managed to drive to work and home ok today - I think knowing I am not on my own with these symptoms have pyschologically helped as well. So thanks to everyone who posted and made me feel that I am not going totally round the bend. Think I am going to mention it to my consultant in Feb, because phobias/panic attacks (if that is what this is) are a symptom of joint hypermobility also.

    The gp also said that it cpould be a traiut of autoimmune diseases.

    Take care and I will update soon. xx Julie

  • Hi Typerfick

    I've been so pleased you've posted about getting vertigo symptoms when driving. Hope the steroids help you, looking forwRd to your update. X

  • Just thought I would leave a quick update. Have been on steriods for 2 weeks and am due to be on them until reviewed in middle of feb - tapering down gradually. Thanks to all the support above, I have been feeling better and am also hoping that the steriods are also making a difference, to give credit my GP did say that he thpught that the steroids would help.

    Off topic I am also celebrating the fact that I have done 2 full weeks in work - been quite a while since I could say that.

    Hope all keeping well.



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