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  • Vertigo What causes this symptom?

    I was diagnosed with MCTD and Lupus in 2008. I have been symptomatic since 2003. I have very stiff and sore joints, hips, knees, and shoulders. Ialso have extreme tiredness, and my newest symptom is dizziness. The dizziness is intermittant and seems to happen when I lay down. I have been prescribed meclazine and it does not seem to be helping. I am also taking prednisone 40mg daily, plaquenil 400mg daily, methotrexate 10mg weekly, folic acid 1mg daily, neurontin 1800mg daily,elavil 25mg,sertraline 50mg daily. Even with all these meds the doctor does not seem to have found the right combination. I am not able to walk much at all, it is very hard to stand from a sitting position, and climbing stairs is impossible. I have been on these meds for almost two years so I do not believe it is a side effect from these meds. Is dizziness a sign of the beginnings of CNS vasculitis? I also get edema in my lower legs and feet. If anyone has any advise I would be most grateful.

  • #2
    Hi Rose,

    Have you seen and ENT (ear, nose & throat doctor) ? There are a number of things besides Lupus that could be causing the dizziness. The following link lists some ideas http://www.mayoclinic.com/health/diz...SECTION=causes

    Also you should let your doctor know about the edema as soon as possible. It may mean something further is going on.

    Take care,
    Lazylegs

    Comment


    • #3
      Hi Rose,

      I've had vestibular disease since 1994, pre-dating autoimmune problems by 13 years.

      As Lazylegs has mentioned, vestibular problems are very complex. It may be that you've developed something as mild as BPPV, which can be rectified by simple exercises you do at home such as Brandt-Daroff or VRT. The exact nature of what you have needs to be assessed by a specialist ENT and a customised set of exercises provided if appropriate - doing the wrong exercises won't do you any harm, but they won't re-balance your vestibular system. It is also possible to have more than one type of vestibular problem and I do occasionally get BPPV on top of my vetibular disease; BPPV usually reveals itself in bed when the room seems to move (does that sound like yours?) but the Brandt-Daroff exercises clear it in a day or two - leaving me with just my usual every day dizziness and imbalance :worried:

      Autoimmune diseases can dump waste all over the body, including the chambers of the ear which control our balance. Two AI diseases implicated in this are Sjogren's disease and SLE. I'm in no doubt that they've had a negative impact on my vestibular problems, but then that's where my medical weak spot is anyway. When I started on Plaquenil, it immediately sent my dizziness out of control so I had to stop taking it.

      Have a look at this vestibular website and maybe print out a few problems that sound like yours and show them to your doctor. I hope that doesn't sound preachy, most non-specialists in my experience are very blase about vestibular symptoms. I'm sure you're well used to negotiating your way through the medical jungle

      http://www.vestibular.org

      Hope it clears up soon.

      Daisy
      :rose:
      Vestibular disease, Sjogren's, ?SLE

      Comment


      • #4
        Dear Lazylegs-
        Thank you so much for advise and link. I read the Mayoclinic link and it was most helpful. Right now my primary doctor is calling the dizziness benign positional vertigo. He thinks a calcium deposit may have dislodged in the inner ear. I am annoyed at myself for not asking more questions, but I get flustered and forget things. I will keep taking the meclazine and hope it goes away. Fortunately the dizziness is intermitant.

        Comment


        • #5
          Dear Daisy-
          Thank you so much for the vestibular link I learned a great deal about treating BPV using exercises. If it does not go away I am calling my primary for a referral to an ENT or who ever deals with this. As I mentioned to Lazylegs my primary said he though it was a calcium deposit that dislogded and causing the problem. He did not say how long it would last and I was only given 25 antivert pills to take every six hours. It is very frustrating getting new symptoms on top of the SLE. I rarely go out because it is difficult walking. The rheumatologist that I saw only twice has resigned from my insurance covered clinic, and I am only seeing a primary. I have applied for disability and am awaiting their decision. The insurance coverage through disability allows you to see any doctor. I hope to get a doctor who will find the right combination of meds that will work for me. Again, thanks for the link and advice.

          Comment


          • #6
            Hi Rose,

            Glad you managed to get some help. There is no long term mediciation for vestibular problems; only short terms meds are prescribed because they dampen down the effectiveness of the ears in transmitting visual and sensory information to the brain (just like seasickness pills, which stop you feeling sick because they stop so much information getting through to confuse the brain - weaken the signal if you like). Pills are given for temporary relief, but in the long term can prevent your vestibular system readjusting to normal processing mode.

            The Brandt-Daroff exercise is the one that is usually used for BPPV. I'm attaching a link with images in case your doctor didn't give you a diagram.

            http://docs.google.com/viewer?a=v&q=...ew0VjNKicHcZtw

            - I find it's easier to turn my head half-way round to the shoulder before I lie down to get the right angle, and maintain that head position all the way through the exercise, even whilst sitting up in order to avoid straining neck, then bring head gently round to face front before repeating the process to the other side.
            - It's very important that you maintain the 45 degree head position as the aim is to get the loose calcium deposit to go back into the proper canal.
            - When you lie down and sit up again stay in that position until the dizziness has subsided and has been calm for 30 seconds. I keep a small kitchen timer in my hand already set to 30 seconds then press the button when I'm ready - it's difficult to look at a clock when you're gazing at the ceiling! On some occasions I've had to stay down for half an hour each side. I do six repeats (three each side, alternately) three times a day until it's fixed - usually only takes a day, but my vestibular physio recommends continuing the exercises for an extra day just to be certain.
            - Also, I put my knees on the bed as I find it more comfortable.

            The general rule is that if you experience no dizziness at all doing the Brandt-Daroff, then it isn't BPPV.
            If you can't get the exercises to work for you and you still have dizziness, then maybe your doctor knows how to do the Epley manoeuvre. It's the same type of exercise, but they put you on a trolley and manipulate your head into the right position.

            It is horrible getting extra symptoms, so really hope this helps.
            Last edited by greenhaggis; 05-23-2010, 12:54 PM. Reason: link replaced with a non-commercial one

            Comment


            • #7
              Hi Greenhaggis,
              Hadn't realised the link I sent was commercial, and must admit to not reading all the rules about posting when I signed up!
              Thanks for finding a good alternative.
              Best wishes,

              Comment


              • #8
                Dear Daisy-
                Thank you so much for the link you mentioned. I printed out the Brant-Daroff exercises and I am going to do them right now! My doctor did not mention anything about exercises or alternitive treatments. I have my fingers crossed that these exercises work. It is annoying when I lay down and the room spins. Thank you again for all your advice and help.

                Comment


                • #9
                  Hi Rose,
                  With regards to the edema, I have battled this in my legs for years now. I am on diuretics year round, and take both potassium sparing and non-sparing with potassium replacement. The heat makes this a lot worse, so you would be well advised to talk to your primary care or rheumy about this. Keep your legs elevated until you get this under control, and then be careful to do it about 1/2 the time.
                  Do not take this condition lightly. It can be symptomatic of other problems also, so get it looked at.
                  Sally

                  Comment


                  • #10
                    Dear Sally-
                    Thank you so much for the advice about the edema. I see my primary again soon and will bring it up to him. This is a short post today as I am feeling wiped out. I have !been in bed most of the day. Just up to eat and go to the bathroom. I am even having pain getting up from the chair. I must have done too much yesterday. I can't wait for social securitys decision on my case. I would love to get in to see a rheumatologist so I can get on the right combination of meds. It was like pulling teeth to get my primary to increase my methotrexate from 7.5mg weekly to 10mg weekly! Thanks again for writing.
                    Rose

                    Comment


                    • #11
                      Dear Daisy-
                      I have been doing the Brant-Daroff exercises and the dizziness has not resolved. You mentioned that if you get dizzy doing the exercises then it is definately BPPV, I am sure that is what I have. I am just going to have to ride it out. Thank you again for all the information you sent. My doctor did not mention anything about exercises. Next time I see him I am giving him a copy of the print out on the Brant-Daroff exercises! I don't know what I did the other day but I am wiped out. Spent most of the day in bed yesterday, and I feel exhausted now and I just got up. I am going to do the exercises now and lay down. Thank you again for writing.
                      Rose

                      Comment


                      • #12
                        Remember never to over do exercises I would think no more than 5 repetitions of each and perhaps spread out over course of day (no more than 15 mins of exercise in first go anyhow), and often it takes weeks of doing them to see improvements not day/days.

                        Comment


                        • #13
                          Originally posted by daisy246 View Post
                          The general rule is that if you experience no dizziness at all doing the Brandt-Daroff, then it isn't BPPV.

                          Hi Rose,

                          Sorry to hear you're still having problems.

                          You've got my quote twisted around - the way you read it is very different to what I said! LOL

                          The Brandt-Daroff exercises do work remarkably quickly for people who have BPPV; if you continue to have dizziness after two or three days doing them, then there is probably another cause.

                          Vestibular problems are much more complex than people imagine. Did your doctor do the Halpike test on you before deciding it was BPPV? Put you on a bed and get you to fall back over the end into his arms so he can watch your eyes? ( this is a genuine test!)

                          Everything is complicated of course by the fact you're on loads of medications that probably all describe dizziness as a possible side effect

                          Keep your spirits up.
                          Last edited by daisy246; 05-25-2010, 10:14 PM. Reason: poorly expressed

                          Comment


                          • #14
                            Dear Daisy-
                            Thank you for clarifying your quote! I did the exercises for one day and then stopped. I will do them for three days in a row and see what happens. I have been really wiped out the past two days and in bed most of the day, so that is why I kind of gave up on the exercises. The antivert is definately not helping but I will keep taking them just in case. My primary doctor did not do the Halpike test and the Quick Care doctor that I saw originally for the dizziness did not do the test either. If the Brant-Daroff exercises don't resolve this after three days I will call my primary and see what he wants me to do. I do not think it is the meds causing the dizziness because I have been on them for almost two years. Thank you again for writing.
                            Rose

                            Comment


                            • #15
                              Dear Lesley-
                              Thank you for letting me know that it can take much longer than a few days of these exercises for the dizziness to resolve. I will remember to do no more than five repititions of the exercises. I just can't believe the doctors don't explain all of this to their patients. I know I should be used to this by now but it is still frustrating. Thanks again for the info and advice.
                              Rose

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