No answers left in limbo

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Went for second consultant at ion with ent doctor today. Very very upset. No answers. I started with this 6 months ago. Although I am starting to feel a bit better I would to feel normal again. He said the hot and cold air test and following the light tests were normal. Eye test came back normal and hearing test.

I feel as though I'm walking on a boat every time I bend I feel as though I might fall. I have shifting moving feeling in my head when sat. I forget everything.

When I started with this 4 other people were also off not that I knew at the time but found out subsequently.

Ent said may not be ear but may be I am having panic attacks and anxiety as it is worse in supermarkets and busy places. I explained I didn't think so. In fact I know it's not that.

I explained that I had anti biotic recently for urinary infection which made me feel almost 100 percent better with my balance which was a big unexpected surprise to me. He said I can't have a bacterial infection as I would have hearing loss feel sick and have a temp. My symtoms began to return after a week of the antibiotics. I was told to continue with betahistine for 6 months atleast and come back to him in 6 months but I feel so upset as nothing has been achieved. And I'm left in this situation. So upsetting and frustrating and left to feel it's in my head!!

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  • Posted

    I have had this before I had been on a bad ferry crossing for 6 months. I feel ok when I'm in a car being driven. I havent actually driven myself just incase. I wondered if it was mal de barkment but I don't know. No mention of it from ent today. And I didn't bring it up. I had a list but I felt rushed out and when he went down the panic attack route I was thrown any way and felt I was just explaining I wasn't.
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  • Posted

    I have had this before I had been on a bad ferry crossing for 6 months. I feel ok when I'm in a car being driven. I havent actually driven myself just incase. I wondered if it was mal de barkment but I don't know. No mention of it from ent today. And I didn't bring it up. I had a list but I felt rushed out and when he went down the panic attack route I was thrown any way and felt I was just explaining I wasn't.
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  • Posted

    Please help
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    • Posted

      Google PPPD (Persistent Postural Perceptual Dizziness).  This may help provide some answers.  It took me over a year to begin to feel better and probably 15 months or so for the feelings created by being in large open space or stores to settle down.  What doctors don't understand is that the sensations cause the anxiety.  When you feel that you are not anchored spatially or that you are going to fall over, it would make anyone anxious.

      Most of us will attest that you will find no medical profession that will help in your recovery.

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    • Posted

      Hi Terry,

      I've looked up PPPD/CSD and read a ton about it and talked to doctors about it, I think I have it but the doctors don't really believe that PPPD exists. They don't like that term.  

      I've read that one can take an SSRI/SNRI and do VRT for PPPD. 

      Did you ever or are you taking medication for it? Did you do VRT? 

      My symptoms are, a woozy dizzy off balance feeling (not vertigo) when moving and turning head. I'll usually wake up feeling fine but once I start to move around, meaning more turning and looking this way and that, it starts. I get relief when driving and when laying down but it's not 100% relief. It has gotten better over the last 10 months (started after a vertigo attack and I've had 3) but since that day I haven't felt the same, with symptoms as stated above. The visual vertigo has gotten better since then but if I move my head to much in a busy environment my symptoms ramp up like, trying to follow and partipate in a group setting, or where there's a lot of people. I can swim and ride a bike but afterwards my symptoms are increased. 

      I beleive I suffer from anxiety and depression from this now, I'm not on any medications except a diuretic which my neuro-oto put me on but all my tests have been normal and I don't really have classical signs of endolymphatic hydrops. He put me on the diuretic because of my history of 3 vertigo episodes and an abnormal/positive eCog test. However, I believed the eCog test was a false abnormal so I requested it done again and the second time showed normal/negative. I have no hearing loss and no major ear fullness. I have some tinnitus, high pitched tone, but I think it's nonessential. It runs I the family, my dad has it, his mom had it (she'd have to sleep w/the radio on at night). 

      So, I thinking after 6 months of taking a diuretic and following a low salt diet without any improvement of my main complaint, motion sensitivity to self motion, I'm at a loss. When I read the symptom of the diagnostic criteria of PPPD, I feel that describe me! 

      Anyways, would appreciate your input regarding what has helped you, meds, VRT, time? 

      Thank you!

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    • Posted

      VRT, time, low sodium diet, sterois, were all things that I did.  I canot say what heped and what didn't.  I think time more than anything as it has gradually gotten better.  I started an SSRI 3 weeks ago but, had to stop it due to a major sinus infection.  I could not tolerate the sinus issues in an to the SSRI side effects.  Most SSRIs take 2 or 3 weeks for side effects to disipate.  I have been stuck at what I believe is 95% recovered for months.  I have head sensation if I move my head quickly or if I nod.  Sometimes is an environment is too busy I get a spatial feling.  I can handle stores now as well as crowds  When I have a sensaton it ramps up the aniety still.

      There was a guy on here, DizzyDarren, that suffered for 6 years.  He was prescribed an SSRI (Prozac) and Propranolol and says that he has recovered fully.  That would also indicate PPPD.

      It's amazing that a doctor that cannot tell you what you are suffering from, would so easily tell you what you don't have.  He/she probably has no clue what PPPD is.   Maybe he/she should look it up.

      "In 2010, scientists from around the world began a process of identifying the most important features of these syndromes.  In early 2014, they reached a consensus on the key symptoms and defined a diagnosis of Persistent Postural-Perceptual Dizziness (PPPD).  

      The World Health Organization has included PPPD in its draft list of diagnoses to be added the next edition of the International Classification of Diseases (ICD-11) in 2017."   

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    • Posted

      Thank you Terry. Are you still doing the low sodium diet? I try to stay around 1500mg per day give or take 1-200 but when I do eat a high sodium meal or have a high sodium day, I don't feel worse. 

      Are you going to restart the SSRI? I've tried a short stint of Xanax and Effexor ER. Xanax seemed to help a little for about two weeks the my dizziness went back to baseline. The Effexor though, I tried for only 3 days because of bad side effects! It was another 7 days of what felt like withdrawal side effects, awful! I was even taking a low dose, meaning opening up the capsule and taking only granules! 

      I'm going to talk with my NP tomorrow about starting Zoloft, of course at a very low dose because I think I'm sensitive to meds. I think I may have vestibular or chronic migraine to because I get frequent mild-moderate headaches, almost daily for the last 10 months with a few bad ones thrown in that time. I've read that with vestibular migraine patients about a 1/3 of them have CSD/PPPD. Dr. Staab is putting together a study of people who have VM with CSD to trial two drugs, verapamil and Zoloft. The verapamil will be given to those with migraine as their main complaint and Zoloft to the people who mainly have CSD complaint. 

      Dr. Staab is a psychiatrist and it seems when I've brought up his terms CSD/PPPD they sort of dismiss because they don't think it's a real medical condition or they're not feeling comfortable treating it because maybe they think it's more of a psychiatric disorder. However, it's not, it is a neuro-otological disorder. 

      My neuro-otologist and neurologist don't really believe in it, it seems. Maybe I need to see a psychiatrist, lol!

      I've been doing VRT off and on over the last 10 months, recently with a NCS PT but so far not helping much. She's having me do more balance exercises rather than gaze stabilizing because she feels in to depended on my eyes for balance, which does make sense in a way. 

      But, I do believe time has helped in some ways because some symptoms have dampened and some have worsened if that makes sense. 

      Thank you for responding. I hope you are recovering from your sinus infection. 

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    • Posted

      I haven't done the low sodium for several months nor any VRT.  Yes, I plan to start back on the Sertralene in the next couple of weeks.  I have also read that Propranolol and Atenolol are good for MAV and they also help with anxiety.

      The medical profession would be more receptive if there were more of them suffering this horrid illness.  You are in Denver?

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    • Posted

      You mentioned it in your first post, " I'm in Denver and I've talked with optometrists here and they say I don't have it because I don't have blurred vision, that's supposedly th hallmark symptom, but not for everyone. Well, I've rambled on enough, I'm still not convinced itw my ears causing my symptoms. Good luck in finding answers. Has anyone  answers? Thanks for reading".

      I am in Alabama.  Visited Colorado several years ago and stayed in Frisco.  What a beautiful state! 

      The video is very good on discussion of PPPD.  Interestingly it is done by an audiologist and a VN physical therapist. (no psychiarist involved)

      There is an ENT in Aurora, Dr. Carol Foster, that suffers from BPPV.  Maybe she could help.

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  • Posted

    What Terry said is 100% true!!
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    • Posted

      Thank you so much as I am so upset feeling like they are basically saying it's all in my head. I could just cry all night. And the lack of any help even if he's right and it's anxiety which I don't for one second think is the cause. Thank you for replying xx
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