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I'm not coping, can someone please answers questions

Posted , 7 users are following.

patty818
patty818

I'm having a really bad time with this.  My anxiety and worry about this inner ear stuff is just getting worse.  I have so many symptoms and since the ENT is just guessing at the MAV thing, how do you cope when your doc can't really give you a definite answer.  I read alot of people on here have been told different things all the time, it seems like no one has a real diagnoses for this.  First I will tell you all of my symptoms and maybe someone can help.  It started 10 months ago, I had a sudden out of nowhere feeling like I was moving all over the place when I was siting down one night, it continued on since this day, I went on a road trip about a month later and it wasn;t so bad other than the anxiety of it all, then it went into the rocking swaying feeling in my head, its there when I sit, stand and lay down, at this time my neck and head began to ache all the time, the muscles where so tight I couldn't get relief, so I went to my neurologist and he did trigger point injections in both tops of my shoulders and the back of my head, this helped the pain some but had a bad effect on my thyriod levels, my endocrinologist thinks it cause the thyriod meds to leave my body, so things got out of control at this point and my anxiety was awful, so since Oct we have been trying to get the levels corrected, since all this started i've had symptoms of, anxiety, panic, worry, stress, head pain and some neck tightness, nause at times, rocking/swaying on most days, can't take a shower without the dizziness geting so bad i'm afraid to take showers now, when bending forward to shave me legs or to pick something up, or bending slightly to talk to someone thru a door way, I get feeling like i'm falling forward and then when I stand back up straight I feel off balance or the rocking starts and the anxiety starts again, sometimes when sitting i feel like I'm falling backwards, when mopping or vacuuming or dusting, this causes me to have to bend and come back up repetivily and then after i'm done, here comes the dizzienss for the night and the following day, legs get sore in the thighs from having to balance on some days, when walking at times i feel as if the floor is dropping or bouncing up and down, when having the rocking sensation and walking i have to go slow and sometime hold on to the wall, feel like my head is not my own, floating feeling, head pressure, ears pop, can't relax much, worry that this is soemthing more, when sit down sometimes feel like I;m sinking in the chair, even washing dishes I feel like the room is waving up and down, vision goes weird at times, like not clear in one eye and have a gray smokey film sometimes usually before the head pain and dizzy start, when head hurts the dizziness is worse and i have those sometime once a week.  The worst part aside from the dizziness is this anxiety and worry, everytime I have any sensation of it which is almost every day, I get anxiety, I've been anxious like this for months and I know its not good, but I can't seem to let it go, what if they are wrong and its something worse, that what I wonder, also what if it never goes away and I can't do anything anymore.  Right now i'm still working full time, which is hard beause it gets stressful which doesn't help. I'm afrain all the time, from the moment i wake up until I go to sleep.  I have xanax to take but I don't want to become addicted to it, I'm doing the VRT and it helps some, Ive been seeing a chiropractor, but since he started  traction on my neck my dizziness gets worse, so I am seeing him tomorrow to probably stop this for awhile.  I also have an appt next week with my GP to have things checked out like blood flow to my brain and my heart, and speak with him about this anxiety and possible meds, which I don't want to take but I have got to get my body relaxed.  I wil see the ENT again the following week and see if i can go ahead witht he rest of the testing so we can maybe get this figured out.  I don't want to go back to the neuro because he messed up my thyriod and he knew the steriods could do this but didn't tell me.  I have so many things going on and all i do is spend my day searching online what this is.  I beleive that is not helping becasue everything says something different, like MAV, MDDS, heart disease.  

I am curious first if anyone has all the symptoms i have and if so what is your diagnoses?  And do anyone have bad anxiety with this that is daily and what are you doing to help it?  Also what meds are you on for all of this, the ENT wants me to take topamax, but I'm afraid to because of all the side effects I've read about and the bad things happening to people on it.

Please I really need some help, I feel like I'm loosing it.  

Thank you

0 likes, 16 replies

16 Replies

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  • kori09007
    kori09007 patty818

    Posted

    Hey Patty,

    I have not experienced all of these symptoms but the fuzzyness and dizzyness is something that rocked my world for a little while. I can tell you that the three main things that helped me BREAK FREE from this were:

    1. Seeking the Lord to heal me. Everytime I listened to a sermen I completely stopped spinning and my vision was great. He brought the dead back to life so He can certainly help you break free from your dizziness. 

    2. I got on anxiety medicine. Anxiety is both mental and PHYSICAL! I did not realizw this until it happened to me. I, like you, do not want to be on medicine for the rest of my life BUT it has helped to calm me down enough to focus on the TRUTH and not obsess and think about the lies.

    3. STOP READING HORROR STORIES ONLINE! 

    I went to the gynocologist, hematologist, internalist and got a CAT scan... trust me, you will be okay!!! 

     

    • patty818
      patty818 kori09007

      Posted

      Hi Kori

      THank you for replying.  I am glad to hear your feeling better.  I have been praying about this, I don't maybe I'm not asking for it right.  I have faith in the Lord and know he is with me thru this.

      I will talk to the GP next week about the meds,  I really don't want to take them but I can't keep feeling like this.  I have had GAD for many years but this run is awful.  It hit me in 2010 when going thru peri menapuase and my thryiod was out then and then had it in 1999 when my thyriod itianlly went out of whack.  Sometime i wonder if is its the thyriod meds again, its so hard to tell, but this dizzienss has been different and goes on all day when its there, I have had a few weeks where i had a couple of days of no dizziness and no anxiety.  

      I have decided to stop googling and to stop the chiropractor for a while, go see the new psychologist i have at the end of the month,  I  think i'm trying so hard to find out exactly what this is and so worried about the symptoms, that I have really made myself sick and what if I've realy caused something bad.  

      Thanks again for  chatting with me.

  • helen91488
    helen91488 patty818

    Posted

    Hi  Patty, I know just how your feeling. I've had most of these symptoms since December on and off. Saw my GP this morning cos the situation is making me so anxious now. Or maybe anxiety is making ears worse? Saw ENT doc who say he not concerned and that. It a virus which has to work itself out. Easy to say! I'm a nurse and I've only manage to work 3 weeks this year so far! Whole life being affected by it. Got so stressed I started losing my hair!. Doc has done all bloods. And every single one is perfect!  I requested anti anxiety meds from doc which they have given me. Just hoping things improve. That's the cruelest part of this bug? You start to.   Feel better and get all happy then wham back it comes. I. Try not to read silly posts with daft suggestions for cure as they make me feel worse.

    logically I know I will be ok as I'm sure you will be too. We just have to hang in there and breathe through the bad bits. Take care xx

     

    • patty818
      patty818 helen91488

      Posted

      Hi Helen

      I'm sorry your going thru this awful thing.  I find amazing how many people seem to be dizzy and know on seems to know how to help.  

      I'm afraid of the meds as well, but its just to much to handle now, just sitting here typing my neck is hurting and i can feel the dizzy coming.  I also get bad right before a hot flash starts, don't know what thats about, but I"m post meno now in the 4th year.  I'm just really tired of waking up everyday and worrying about what is today going to be like.

      I"ve tried anit depressants years ago and and had so many bad side effects i'm afraid of them, xanax works but I don't know if there is an anit-d that is similar.

      I don't know what to do.  

      Thanks for chatting with me and I hope you feel better.

  • eleftherio33095
    eleftherio33095 patty818

    Posted

    I would like to help, but you are presenting a lot of information.

    If you could describe three main symptoms that are affecting you, what would they be?  Also, what triggers them, if there are any triggers.

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

    • patty818
      patty818 eleftherio33095

      Posted

      Thank you for replying

      Rocking/swaying sensation in my head and thru my body, worsening when neck and head hurt and awful when anxious, but anxiety and stress make them worse, so I can't tell whats causing what.   Neuro-otologist thinks MAV, because I mention headache causing worsening dizzy rocking feeling,  Have had xrays of neck so no bleeding anywhere, but curve in neck is off, also saw Atlas orthogenal doc he said C1 is off, but had that done for months and didn't think it was helping so went to another chiro and the traction makes it worse.  Also when showering i get awful dizziness and anxiety, to the point of afraid to shower and anticipating it makes it so much worse.  

      Thanks for your help

    • eleftherio33095
      eleftherio33095 patty818

      Posted

      Thank you.  I asked for your worst complaints on purpose.  It may indeed be Vestibular Migraine (also known as Migraine Associated Vertigo (MAV)). Have you been placed on treatment that is specific for vestibular migraine (triptans/tryptophan), and has it helped?  This is not clear from your original description.  Have you done pure tone audiometry (an audiogram), and a caloric test (hot/cold air/water in each ear)?

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • patty818
      patty818 eleftherio33095

      Posted

      The ENT wants me to take topamax, but after reading about all the horrible side effects and things happening to others, I'm afriad to take it.  He said he would start me on the 25 mg dose, but I am afraid of it.  I had all the hearing tests done and he said they are perfect, i also had VNG and when they got to putting the air in my right ear I became so dizzy felt like I was falling thru the air, they stopped the test and so he said it was hard to say what it is.  But when i mentioned the neck and head pain making the dizziness worse thats when he said lets try the meds to see if it helps then he would know it was MAV.  What i don't understand is with the VNG testing and it causing dizziness what does that mean, it must be able to tell them something.  Can you help me understand that?  Also why and how does this cause the anxiety to be this way?  I don't get it, what does the ear have to do with anxiety?  Other than I'm scared to death of the dizziness and how it comes on so quick, some days i will feel ok with nothing, then hours later bam dizziness rocking feeling starts and i can't cope, just afraid.  I no the xanax is helping the anxiety but not the ear problem.  I continue with the VRT daily in hopes that it will stop all this.  Also should I continue with the chiro working on my neck and this traction which is pulling my head in an upward position  and eventually all the way back.

      THank you

    • eleftherio33095
      eleftherio33095 patty818

      Posted

      I shall keep the answers short and sweet in the hope that all is clear:

      1) VNG/Dizziness:  It has given an indication that you have a vestibular problem.  MAV is a bilateral vestibular nerve problem, although no one agrees if is central, peripheral or both with respect to the brain.

      2)  The normal audiogram has helped rule out Meniere's Disease, which can present with similar symptoms.

      3)  Anxiety and vestibular function are linked.  The first can cause the second, but also the second can cause the first.

      4)  Taking the topamax is like a diagnostic test.  If you feel better, then the diagnosis of MAV will become certain.  However, if there are side effects, then your physician will stop the topamax and give you something else, either something similar or triptans.  This is not uncommon.  You should come clean with your fear of the side-effects with your doctor, and he can reassure you.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • patty818
      patty818 eleftherio33095

      Posted

      Thank you so much for your help.  I feel better knowing it really could be MAV, its hard and exhausting trying to figure it out on your own,.  I know I should trust in the doc, but with health anxiety its hard.  Yes I will be letting him know about the fear of the topamax when I see him.   THank you again for listening and your help.

      Patty

  • dizzyear
    dizzyear patty818

    Posted

    Hi Patty,

    Dizziness can be a difficult symptom to diagnose.  I think best option would be to continue to work with your ENT and other Drs to get more information.  However, I have some additional info that may be helpful based on a condition I have that is a possible fit to some of your symptoms.  

    - '...rocking swaying feeling in my head, its there when I sit, stand and lay down. ...'  Sounlds like cronic imbalance symptom and not spinning type vertigo.  I assume this is present most if not all of the time.

    - '... when walking at times i feel as if the floor is dropping or bouncing up and down ...'  This sounds like a symptom called Oscillopsia.

    These are possible symptoms of a condition I have called Superior Canal Dehiscence.  I would suggest you read up on this a bit.  Have you had a hearing test with an audiologist.  This condition normally shows some conductive hearing loss.  You may want to discuss this condition with your ENT.  Follow along tests would be a high resolution CT scan and or VEMP test.   This is a rare condition and I am sure that everyone reads your symtpoms and feels like it may be something they have.  However, that fact that you see bouncing in the vertical plane hints and a problem with the superior canal of the inner ear.  

    A couple of questions:

    If the room is quiet, can you hear the movements of your eyes? (approx 25% of Superior Canal Patients can hear this)

    Do you have sensitivity to loud sounds and do you have any dizziness caused by noise?

     

    • patty818
      patty818 dizzyear

      Posted

      HI 

      I had hearing tests and they all where great.  The VNG test was the problem, when the air was put in the ear I became very dizzy as if I was falling thru space,  I had a head CT and nothing was found, in an MRI I had 6 years ago the ENT said there was a migraine lesion on it then, but I was having no migrianes just BPPV which I was treated for and it went away.

      I have no hearing loss at all.  no I don't hear my eyes moving, that would be to weird for me.  My sensitivty to sound is more like a startle, not dizziness.  

      When I walk and feel like the floor is moving or bouncing, my vision is fine, it goes along with the dizzy feeling in my head I think, and is worse with anxiety.

      Thank you for the info, and I will be seeing my ENT in about 2 weeks.

      Patty

    • DizzyLizzy68
      DizzyLizzy68 patty818

      Posted

      Patty,

      I've had all the tests that were mentioned.. vng, calorics, 2 mris, ct scan, and some other cochlear ear tests at Stanford that I can't even remember. I have seen 3 neuros, including one at Stanford. You sound like u have MAV. It sucks, because curing it takes time. Topamax is a migraine preventative, and that class of drugs is used to treat MAV. It was my understanding from the 3 neuros that the triptans are not used for MAV, since MAV happens more frequently and/or is ongoing for most, and triptans are only to be used sparingly. On top of that, they can set one up for nasty rebound migraine activity which u don't want. There are many migraine preventatives to try, and they all have possible side effects. Topamax can have side effects, and many will start off at low dose and work up to therapeutic dose. It can take weeks or months for any of the preventatives to work. And people give up too soon. That's what each neuro told me, and what I have read repeatedly in literature. Diet and hormone medications can also worsen or trigger MAV. I had to change my whole diet on top of propranolol (another migraine preventative) to stop the MAV. It is a frustrating condition because there is not a surgery or magic pill that can cure this quickly. And migraine sufferers tend to be sensitive to meds, so they get side effects and stop. Each med I tried made me feel worse at first. Sorry to say that, but it was the truth for me. One neuro finally told me straight out that I would not get better until I took my meds. So I made a deal to start at very low doses, and work up. And I was cured for a year. It came back in March, and I had to up my dose of propranolol. The last week, I am finally getting way better and almost feel normal. But it took almost 2 months! Also, l don't get any of the propranolol side effects anymore, except I do have some weight gain from it. Maybe talk to your neuro about your concerns with the Topamax and ask if another preventative might be more appropriate for you. Each neuro has their favorite, and will give it first. Topamax can take several months to work, and usually requires a high enough dose for effectiveness. But neuros have told me if one can stay on it for a year, it can sometimes act to "reset" the brain for migraine activity. Good luck, and hugs to you. I know what it feels like, and it also feels very hopeless at times. I have been there!

      Emis Moderator comment: I have removed product/company names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • dizzyear
      dizzyear patty818

      Posted

      Hi Patty,

      A couple of follow ups items,  The noise/pressure from the air could be considered the sound/pressure induced dizziness,  

      Also, a general head CT cannot be used to identify superior canal dehiscence.  This condition is caused by a very small hole in the superior canal that requires a high resoultion CT of the specific area to look for the hole.  I think this would still be worth a conversation with your ENT.  Do your symtpoms come and go or is the dizziness fairly constant?  

    • patty818
      patty818 dizzyear

      Posted

      The dizziness is pretty much all the time, I get days where there is none, but most of the time. I think if I didn't have such fear and anxiety about it, it wouldn't be so bad. But I'm one of those people that need to know why and how this happened. When it hit I had done some rigorous exercises where I had to go up and down quickly then a few hours later bam dizzy.

      When you have dizziness do you feel it they your entire body, like your on one of those massage chairs with rollers going up and down.

      What symptoms do you have?

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