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  • BPPV & Weight Loss - Is this normal?

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    Old 05-24-2005, 06:29 PM   #1
    swirlygirl
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    BPPV & Weight Loss - Is this normal?

    I have been corresponding with a few people here and it has been suggested that it may be helpful for me to start a new thread with the hope that I may get more information to help me. (Thanks TESSS!)

    I have recently been diagnosed with BPPV on the right side with a possible "Meniere's variant". I realize how lucky I am compared to some others - I've only had this for ~15 months. I have been through a whack of tests - have seen 3 ENT's - 2 who are oto-neurologists, as well as 2 neurologists - 1 who was an MS Specialist and a Gastroenterologist/Intenist.

    I had an episode 5 years ago with very similar symptoms, and was diagnosed with Vestibular Neuritis. This eventually went away on its own after ~ 6-8 weeks. However, "IT" has returned as of March, 2004, starting with swirling vertigo as soon as I woke and moved in the morning. For about 24 hours, I could not move without vomiting, and just basically hung on to the bed. Since this time, I still have "attacks" of vertigo (which I call the black swirlies), but aside from this, I constantly feel what I would describe as a "residual" feeling of dizziness, where I feel that I have to touch something to "reference" where my body is in space. This feeling never goes away.

    I have noticed that my memory, concentration, word retrieval, etc. has been affected and I often feel disoriented quite often, which makes going in the right direction after I walk out of a room into a corridor or remembering where I parked my car a definite challenge!

    The one thing that I have experienced that I have not read about much on these boards is constant (24/7) nausea and little to no appetite that I experience, which has caused me to lose ~50 pounds - and I only weighed 150 to begin with! That is a third of my body weight and right now is my major concern. This extreme weight loss has caused other symptoms (or at least that is what is assumed at this time by the medical community), such as numbness in hips/legs (Meralgia Parasthetica?), which comes and goes, apparently due to a possible pinched nerve from the weight loss, and numbness in both hands, which also comes and goes and makes doing anything requiring fine motor difficult. My mobility is affected anyway due to the unstable feeling (residual dizziness) that I feel always, but when I add a numb leg to the picture, I'm sure I look like I've had too many martinis!

    I have occasionally experienced an "out of body" experience when I accidentally catch sight of myself in a mirror or window reflection because I cannot relate the shrunken image I see to me. I have experienced panic attacks on occasion when I am hit with an episode of swirling vertigo, and I'm glad to know that this is not uncommon. I think I have learned how to recognize these "panic" symptoms now, and I do my best to deal with them through breathing, etc. because I know that panicking can make the vertigo worse.

    I don't think that most people realize what a life-changing experience and illness like this is. On the one hand, I was relieved when I learned that BPPV started with the word "benign", but I sometimes wonder if it wouldn't be better to have something more "concrete" that I could deal with. I have tried vestibular therapy several times - usually for ~8 weeks - at which point I become discouraged with the lack of results (in fact, it has at times made me feel much worse without any relief in sight). Then I speak to my vestibular therapist, and we try a new variant, etc., but so far to no avail. I have always been a very active person who enjoyed a variety of outdoor activities with my family - from x-country skiing to kayaking, horseback riding, hiking, cycling, etc. Right not I am just trying to focus on what I can still do with my family an not on what I can't do. I try to combat the nausea with gravol (the only things that works at all for me - and I have tried VT with and without it), eating smaller portions of food more often during the day and drinking nutritional supplements (Ensure+) ~ 3 times a day. However, up to this point, I have still been unable to get my weight back, and so my overall strength, etc. is affected too.

    I have also been in a doctor's office where I felt that I was not being taken seriously or even believed. This experience has luckily been in the minority. However, it was still very upsetting and humiliating, but I am just too tired sometimes to do or say anything about it. I know most of you with this also experience the bone-deep, whole-body fatigue that does just not go away. I am amazed at how well many of you have functioned for such a long period of time with this disorder. I want to thank you for giving me somewhere to go where I can vent without feeling like I'm whining, and also a place where I feel understood. So thanks all, and keep sharing!

    Kind regards,
    Swirlygirl

     
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    Old 05-25-2005, 10:15 AM   #2
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    Re: BPPV & Weight Loss - Is this normal?

    Hi! I am gald that you found this board! I know it has been wonderful for me. I know what you mean about talking to people who understand. It is really hard to explain what we are going thru to other people. When you say you feel off or dizzy, I really don't think that people "get" it. I was like that before too. I thought, what's the big deal, when people said they were dizzy. WOW...I know what the big deal is now! It affects our lives in ways you might never imagine. I have to think twice before I do anything now. I have to decide if it will make me dizzy or not and the wonderful doctors that look at you like you are nuts! I guess we are all just anxious or depressed, not suffering from a physical problem! The stress from not knowing what it was, was the worst thing!! I do hope you will feel better. You know, the VRT can make you worse before you get better! Try to stick with it.

     
    Old 05-25-2005, 12:32 PM   #3
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    Re: BPPV & Weight Loss - Is this normal?

    Hi Swirlygirl
    I lost quite a bit of weight initially with this thing. My story is pretty similar, started out with labs and then almost 4 years later came down again with vertigo that turned out to be BPPV. I lost about 10lbs when it first came on as i couldn't eat. The anxiety also caused me to stay off my food, i am one of those who loses their appetite when nervous etc. I am suprised you are still feeling so sick with this. Are you still having any vertigo episodes, or are they all over now? Did you do the epeley manoeuver to get rid of the rocks in the canals? I am wondering if you still at that stage and full compensation can't begin until you get those ear rocks out of the canal for good.
    As far as the lightheaded, brainfog, memory stuff goes....yup, had all of that and still do when I am overtired or stressed. The past three weeks have been getting better and better so i am feeling pretty positive about all of this right now.
    As far as the VRT, I found that doing balance drills worked best for me. I still do them now to keep my vestibular system working hard.
    Could you stomache things like protein shakes to help pack on some weight without actually 'eating'?
    Hope you have a great day!
    FC

     
    Old 05-25-2005, 08:47 PM   #4
    swirlygirl
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    Cool Re: BPPV & Weight Loss - Is this normal?

    Hey Dizzy2 and Firechick!
    Wow, finally people who can relate to what has been happening! Thanks for the encouragement and advice.

    Yes, I have been doing the Epley Manoeuvre, both in an office with an ENT and a Vestibular Therapist, and have had training from both to do it correctly myself at home. And yes, it certainly can make you feel worse before you feel better! My VT told me though that it should only make you feel ~20% worse than you would "normally" feel, but in my case, it felt like a heck of a higher percentage, and I actually ended up in the hospital for 10 days at the end of one 8-week period due to "poor intake" and dehydration. I've tried many protein shakes and am also drinking nutrient supplements, as I mentioned before, but I still have not been successful with putting on weight. I am determined, however, to keep trying until I find something that works, so that the spiral will be upwards instead of downwards. I have never had any problems with weight loss before and I am not a person who normally suffers from a poor body image. In fact, my friends and family, people who know me well, are astounded that I am having trouble taking in enough food because I have always enjoyed cooking and eating so much!

    I still do have attacks of vertigo, along with the "residual dizziness", but I think that I am able to recognize the signs before a full onset of vertigo, so I lie down sooner and the actual vertigo does not seem to last as long.

    Due to the "residual" imbalance that I feel 24/7, I have been trying more "tracking" and balance exercises, as well as the Epley and Brandt/Darhoff. I'm sure it will kick in eventually! I think that the fatigue is somewhat due to the unconscious attempts of constantly having to compensate for the screwed-up vestibular system - we just don't realize how much energy that takes!

    Anyway, thanks so much for your input - at least now I don't wonder quite so often whether or not what I'm feeling is "real". I was always so sure that there was a physical cause for what I was feeling, and I know the clinical symptoms (nystagmus, etc.) have been seen by the specialists, but after awhile, you begin to question your own judgement. I also think fatigue is a big factor in this "questioning" too. However, just having found people who understand makes such a huge difference to my emotional well-being. Thanks all!

     
    Old 05-26-2005, 04:25 AM   #5
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    Re: BPPV & Weight Loss - Is this normal?

    ...As I was reading the first few paragraphs of your post, I was thinking to myself that this really sounds like your dealing with an anxiety/panic disorder. Of course, as I read on, you do deal with an anxiety/ panic disorder. My wife has an anxiety/ panic disorder and she developes symptoms identical to my Meniere's (light headedness and dizziness). The doctor was ready to send her to an ENT but decided to adjust her anxiety meds to see if that helped and it cleared up her symptoms almost immediately. I found this quite facinating.

    ...She also has since had several bouts of BPPV and I showed her how to do the dix-hallpike/epley manuever and it helps her also. With my experiances and hers, I tend to believe that anxiety and inner ear disorders may go hand in hand. who knows, she may have an inner ear disorder instead of an anxiety disorder, but had she followed the standard treatments for inner ear, I don't think she would have had very much relief as compared to the anxiety/ panic treatment.

    ...She takes benzos and SSRI's to keep the panic attacks down and also the dizziness. I'm not advocating these drugs but just showing how different the treatments can be. She was taking the benzos when she first started getting the dizziness and when the doc increased the dosage, the symptoms went away, so it does seem to be dosage dependent. The SSRI has allowed her to decrease her dosage of the benzos.

    ...I've done a lot of research on her and my condition(meniere's) and there seems to be a lot of "cross over" when it comes to anxiety and inner ear disorders and when anxiety mimics other disorders, it becomes very hard for the docs to diagnose and treat. I even read a report on a case of asthma that turned out to be anxiety related.

    ...So I'm not recomending the anxiety drugs but just wanting to share that since you do have an anxiety/ panic disorder, that the symptoms you described can be caused by disorder also. I also know that my wife now struggles with weight gain since she's been on the SSRI's which has me wandering if there's a connection there also.

    Rick

     
    Old 05-26-2005, 05:24 PM   #6
    swirlygirl
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    Smile Re: BPPV & Weight Loss - Is this normal?

    Hello Rick,
    What interesting information in your post, especially with the interrelationship between vestibular dysfunction and anxiety/panic disorders. I too believe that they definitely are interconnected, and in my case at this time I feel that I am caught in one big vortex (no pun intended!) and I'm not sure what is causing what symptom or how the symptoms "feed" off each other.

    I have indeed been diagnosed recently (February/05) with anxiety/panic disorder. I had never experienced a full-blown panic attack before and I thought my "time was up" when I did before I learned more about it. My doc has called it "an adjustment disorder" caused by the initial symptoms of the vestibular disorder, but now it's just one big chicken and egg thing! I too have done some research on both and it has been a huge learning curve for me in dealing with this. I guess if I were to be positive, I could call the last 15 months a period of growth and learning, but in all honesty most days I don't look at it that way, though I do try.

    As for meds, I am currently taking Clonazepam (a benzo I believe?) and an anti-depressant (Remeron), which was chosen specifically because it contains an appetite stimulant. As much as I hate taking meds, I know that the "panic" part of the disorder has gone way down - no panic attacks for a couple of months! - but I still experience some 'free-floating' anxiety, and I believe it is directly linked to my vestibular dysfunction. My dx of "BPPV with a possible Meniere's variant" is still what I'm going on, but there seems to be some symptoms that are outside the normal parameters for this dx. When being tested by the VT that I see, she said that my balance test scores (testing sway) were way higher than she usually sees in someone with BPPV, and my recovery from the vertiginous attacks was longer than she usually sees - 1/2 hour to 1 hour for me while lying still - she usually sees recovery in 3 - 5 minutes with others. Also, as I have mentioned, the therapy that usually works to move things back where they should be and compensate for the mixed signals I'm obviously getting, has not worked for me so far. She suspected MS, but a clean MRI and an appointment with an MS neurologist ruled that out.

    Anyway, I'm getting off track here. Along with the meds that I take for anxiety/panic disorder/depression, I am also doing behavioural cognitive therapy and I find that it is a good fit for the type of person I am, and it is helping me with the adjustment.

    I hope that your wife (and you too of course!) find what works best for you. Is your meniere's the "drop type" where you have no warning to go to a safe place? I know a man who has that and he has now developed agoraphobia along with an anxiety/panic disorder! He goes to an oto-neurologist every few months to have some nerve endings in his inner ear "deadened", which is excruciating painful, but it gives him some relief until they grow back and he has to have it done again! What a price to pay for balance and sanity!

    I appreciate you sharing the connection that you have - very observant - and helpful too. Take care of each other...

    ~Swirlygirl

     
    Old 05-26-2005, 07:37 PM   #7
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    Re: BPPV & Weight Loss - Is this normal?

    ...Looks like your already trying everything, it's a shame it's not helping. As far as my Meniere's goes, when it was at it's worst, I was having 2 vertigo attacks per week. Some of them came on suddenly but they weren't drop attacks like you described your friend has, but I did have to find a place to lay down very quickly. I found that most of my vertigo attacks were being triggered by gluten (wheat, oats, rye, and barley). I then found that most of the rest were triggered by reactive hypoglycemia.

    ...It appears that I have insulin resistance and the extra insulin was playing havoc with my Meniere's. Since I went on a low glycemic index diet and eliminated my food allergies, I have gone 2 1/2 years without a vertigo attack. So diet can play a big role, but it sounds like your not eating anything so it would be hard to believe it's a metabolic disorder or a food allergy in your case.

    ...I have developed intermittent BPPV and if you haven't researched it yet, you may want to. You may have had BPPV once to get the diagnoses but it comes and goes and in your case it sounds like it went. I do a dix-halpike when I get dizzy to see if it's BPPV or something else. One thing I do that's a little different is that I start with my head all the way to one side, where I am looking at the wall why laying down on the bed. I then very, very slowly start to turn my head until I'm looking straight up at the ceiling and then continue until I'm facing the other wall.

    ...That way my head goes through every position and if those crystals are there, they'll move. There's been times that this would generate the reaction when the standard positions would not. If i go through this and get no reactions, I'm pretty well convinced that something else is triggering my dizziness. It sounds like you like this doctor but if the positions don't trigger the short spurts of vertigo, then the doc needs to be looking elsewhere but that's only my opinion.

    ...In my research on my wifes panic disorder we found that overbreathing and especially underbreathing were triggering her panic attacks. These conditions are called alkalosis and acidosis and is an imbalaof the oxygen to carbon dioxide ration in the blood stream. If you haven't investigated this part of the anxiety/panic disorder, it might be worth your while. Even though you haven't had an asthma attack, you breathing may be restricted enough to cause this imbalance. That's all I can remember right now.

    Rick

     
    Old 05-27-2005, 07:49 PM   #8
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    Re: BPPV & Weight Loss - Is this normal?

    Hi Rick,
    Thanks for sharing your own version of vestibular therapy - I'll try it - I'll try just about anything right now!

    When I was being tested with the Dix-Hallpike Manoeuvre by the ENT who diagnosed me in September, 2004 with BPPV, she did indeed see the short bursts of nystagmus when my head was hanging back on the right side. However, what was different in my case was that she did not see the fatigue (lessened nystagmus) that is usually the case when the Dix-Hallpike was repeated. I was told at that time that my body had done a poor job of compensating, and I was referred to a Vestibular Therapist. I saw her about a month later, and her testing (Dix-Hallpike) again saw the nystagmus on the right side, but also, to a lesser degree, on the left. Again, she did not see the fatigue with repeated manoeuvres. These findings, along with the longer duration of vertigo attacks I was experiencing and not always clearly associated with movement as is usually the case with BPPV, and the sway/balance testing that was "outside the norms", had them wondering about what they described as a "possible Meniere's variant" along with BPPV. I was also checked for MS, Lupus, Rheumatoid Arthritis, etc. which all turned up negative.

    These findings, along with the lack of success for me with Vestibular Therapy, which included tracking exercises, balance exercises and the Epley Manoeuvre (tried on both sides at different times), certainly has me wondering whether I am on the right track too. However, I have had so many tests and have seen so many specialists, who can find nothing else wrong, other than the anxiety/panic disorder (which appeared with obvious recognizable symptoms ~4 months later than the vertigo), that I don't know what to think anymore. Right now, I'm just trying anything if I feel that it can't hurt me and may help.

    Interestingly enough, I do have an appointment coming up with an Allergist, so your comment on food allergies gives me a little hope that there may be some answers there. I actually do eat solid food (small portions more often (kind of like grazing!), along with protein shakes and nutrient supplements, but obviously not enough to get back to a healthy body weight so far. Too much output, too little input is what my GP says. I do seem to be at least maintaining the same weight for the past couple of months, so that's better than still losing.

    As with your wife, I too find that learning to consciously breath in a way to slow down or stop a panic attack has helped lots. I do "square breathing" - in for 5 counts - hold for 5 - out for 5 and hold for 5. The most difficult part I found was the holding for 5 after breathing out because I just wanted to suck air! If I was finding it too difficult, I counted my breathing in and try to match that # breathing out. As I've said, something is working because I haven't had an actual panic attack for a couple of months.

    So I'll try your variation of the Epley and see what happens. Thanks for all the info - I definitely feel the need to "suck up" all the info I can - from my research and the sharing of others.

    ~Swirlygirl

     
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