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Figuring out my next move

Posted , 9 users are following.

henryroth
henryroth

Hello all,

I've been dealing with dizziness related symptoms for quite some time now. I've gone to an optometrist, ENT,l and a neurologist. I've also had an MRI, eeg, ekg, vng testing, and all replace the blood work done, all of which hav come back normal. Currently I live in buffalo ny, and I've seen every neurologist in my area, I've also traveled to the Cleveland clinic and saw dr. Cherian. All of which cannot find anything of particular interest to diagnose me with. I'm currently at a loss as to what my next move should be. I don't really know what other avenues to follow to try and figure this thing out. If anyone can lend some guidance I'd appreciate it, I'm willing to travel to anywhere in the continental U.S if someone thinks it may be beneficial. If anyone would like to know further details into my situation please feel free to look at my past posts, as it's far too much detail to post here lol

0 likes, 49 replies

49 Replies

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  • gillian76726
    gillian76726 henryroth

    Posted

    You say you have been to a Neurologist. Have you seen a Neuro Otologist though? A neurologist wont tell you much about the Vestibular system as they are not trained in it. They are more about brain damage, tumours tec. I saw one in my early days and as nice as she was her testing was minimal!  I had to find out myself about Neuro Otoligists (Often wondered why the Neuro never suggested it!) when i eventually saw one their testing is much, much more comprehensive as they are testing your .vest .system, aswell. Just google your area for one and see which hospitals they work out of. 
    • henryroth
      henryroth gillian76726

      Posted

      I actually have been, I seen one for one of my very first visits. Unfortunately, he was of no help. He actually runs a dizziness clinic in my area.
  • Waffalobill
    Waffalobill henryroth

    Posted

    There's neurotologist in Syracuse . A neurologist tried to refer me to ones in Boston. I am currently waiting for a call about a appointment in Syracuse. When I first was told I had bppv it was hard to detect. They where not sure even what ear was effected. A therapist told me after some testing. Now it's alot worse. Testing shows its way worse. VNG showed it's slot worse. You can try vestibular rehab. Or try a neurotologist. They do more testing that may show what others didn't find.

    • Waffalobill
      Waffalobill nikki1978

      Posted

      Had it done a few times. Therapist did halpike/ epely first thing. Hoping that would cure it. Lol. Did nothing. Started vestibular excerses as usual. Made it worse. Adjusted them a bunch of times. I make a little progress, it fights back , makes me start all over. Get episodes of vertigo, some mild, some bad, every day. Dizzy 24/7 for months.
  • naomi64
    naomi64 henryroth

    Posted

    Hi Henry

    I don't know what to say because I am going threw the same.  You have went to more doctors then me so far.  I would pray you never know how God will direct you.  Did you take any drugs like Gabapentin that drug can cause dizzyness.  It can be a withdrawal symtom.  

    Naomi

    • henryroth
      henryroth naomi64

      Posted

      The only drugs I have taken this far are lexapro. I've had an aversion to taking anything else Untill I can get some sort of a diagnosis

    • naomi64
      naomi64 henryroth

      Posted

      Hi Henry

      I am going to list the things that are wrong with me, and if other people struggle with it, maybe we can come up with a solution.  I had back fusion surgery in 2014 L5 S1. I had four disks in my neck that are bad c4,5,6,7. degeneration at the 5,6, level and stonisis.  Maybe the dizzy problem can steam from the spine.  I think the weather also arrivates it as well.  My blood pressure use to be 90 over 70  Now its 115 over 70. My anxiety is higher as well because of this problem.  I took gabapentin for 4 months withdraw and that caused dizzyness.  Still think it might be from that.  It's been two months since I took it last.  Do you have spine issues Henry?

      Naomi 

    • henryroth
      henryroth nikki1978

      Posted

      Not much honestly, I've dealt with more side effects than benefits at this point. I'm 8 weeks in, and a majority of the start up affects are dissipating, so hopefully within the next 4 weeks I can see more benefits. Anxiety has been down, but it hasn't done much for dizziness as of yet

    • nikki1978
      nikki1978 henryroth

      Posted

      Can you please let us know how you get on with the Lexapro?  I was considering that and my neuro-otologist said that's what he puts his patients on.  What is it you're diagnose with?

      Thank you,

      Nicole

  • henryroth
    henryroth

    Posted

    At this point it's getting hard to see the light at the end of the tunnel, I feel like I've done just about everything I can to no avail. I'm starting to believe I'm just stuck like this for life, and I had better learn to deal with it. I've tried reading success stories for people like us, and they are far and few in between... I'm now going on two years dealing with this

    • Waffalobill
      Waffalobill henryroth

      Posted

      I been dealing with it 11 years. Drained bank accounts. No savings. Got worse in August. Can't work. Temporary disability pays almost nothing. Electric company wants there money. Mortgage, etc etc. Wife hit a deer with my car on her way to work Thanksgiving. I have had surgery twice for other problems between. Have had a doc appointment of some kind once or twice a week since May. Sometimes more. And still have no answers. Everytime I go to a new specialist I hope he/she says " I know what's wrong. Here's how to fix it". But so far it's never happened. Even my therapist gave up after 3 visits. Lol. She still calls out of curiosity to see if anyone has figured it out. Just so she knows if she ever runs across it again.

    • henryroth
      henryroth Waffalobill

      Posted

      I'm sorry for your problems, thank you for putting things into perspective for me.

      If you don't mind me asking, what sort of symptoms do you have?

    • Terry6872737
      Terry6872737 henryroth

      Posted

      You have been to what I had thought was one of the best in the US.  The only other suggestion that I would make would be the Mayo Clinic in Rochester, Minnesota.  Truth is, no one knows what is causing the issues for most of us.  We spend time, usually needlessly, going from doctor to doctor for an opinion that usually is of little value.

      I cannot remember if you mentioned before that you had done some Vestibular Rehibilitation Therapy.  Thing is, someone, a medical professional, should be able to tell you whether or not you have vestibular damage.  If you have no vestibular deficeit, in my opinion, it would have to be neurological.  Some of the symptoms that you discuss certainly lend themselves to being vascular, migraine related.  But, there are so many things that cause sensations similar to vestibular issues that it is often times hard to know who to go to.  At least at the Mayo Clinic it is multi-specialized and if the first specialist that you see is not the correct one they will refer you to the correct specialist, and it is all at the same facility.  I know since I experienced a vestibular issue it doesn't take much to set off my anxiety.  Once that happens it is hard to tell what is vestibular and what is anxiety.  Anxiety can cause/add to a lot of the same issues as well.

    • henryroth
      henryroth Terry6872737

      Posted

      "We spend time, usually needlessly, going from doctor to doctor for an opinion that usually is of little value."

      This has been the biggest struggle to overcome. I feel like no one has any idea what is causing these issues.

      In regards to anxiety, I absolutely agree. I really can't tell the difference between the two anymore. It's become a giant mess of emotions and symptoms lol

      As of this point, I've had numerous doctors tell me they do not believe it is vestibular damage, so I can only assume it is a vascular/neurological issue. Now I just need some way to diagnose that issue

    • Terry6872737
      Terry6872737 henryroth

      Posted

      From what I understand is that the only way they determine that is to try the Migraine drugs.  If you see improvement then they determine that is the issue.  One guy that used to post on here suffered for 6 or 7 years.  He finally asked his doctor for Propranolol and Prozac.  The combination, according to him, ended his issues.    Propranolol is a beta blocker and also treats high blood pressure but, is used for migraine control.  Atenolol is supposedly easier on the side effects as a beta blocker, though.  Also, topomax and topiramate are used.  Thing is they all have dizziness as a side effect.  A lot of people have indicated relief with Effexor XR, instead of Lexapro, and topiramate.  Sometimes finding the right medication can be just as difficult.  It is really sad that the medical profession in the United States has no better handle on this condition than it has.  It leads to a lot of frustration and misery for us.  It's a sad state that we have to try to glean information from each other to try to help a doctor diagnose but, I guess that fellow sufferers are the only ones that can relate to what we are struggling with, and understand that it is real even when it cannot be seen on a test.

    • henryroth
      henryroth Terry6872737

      Posted

      I've been highly interested in something like a calcium channel blocker as I also have slightly high blood pressure. Something like propranolol seems like a viable option.

      Are you currently taking medication?

      Also, I appreciate your detailed post. You have quite the wealth of knowledge! smile

    • nikki1978
      nikki1978 Waffalobill

      Posted

      Maybe it's migraine associated vertigo? If they cannot find anything else, sometimes it's mav. Have you tried any medication?

    • naomi64
      naomi64 henryroth

      Posted

      I will pray for all of us with this problem....
    • Waffalobill
      Waffalobill nikki1978

      Posted

      8 years ago I had a bad episode of vertigo. It lasted about 3 days. Dizzy for 3 months. They have me 2mg diazepam. It used to help alot. I only took it when I had episodes of vertigo and dizziness. Now that my issues got worse. It's not doing much even if I take it every day.

    • nikki1978
      nikki1978 Waffalobill

      Posted

      Sorry to hear you're unwell. Mine has been bothering me almost five years. My dizziness started in March 2012 right after a sinus infection. Do you ever feel like you're in a dream or get so lightheaded you feel like passing out? I have a doctor appt tomorrow, and am praying for some help to get better so I can at least drive and feel well in stores. In stores, I feel so off, out of it and almost like out of body. Any of this similar to yours? Maybe the diazepam has caused your brain unable to compensate? I've heard that can happen.

    • Waffalobill
      Waffalobill nikki1978

      Posted

      Have those feelings alot. I don't take the diazepam as directed. Only take it if I have to go to docs or something. Just to help with car ride. Because it's such a low dose, I don't want to build immunity or have a addiction problem. Diazepam/valium is one of those drugs makes your body stop producing a chemical you need. It replaces it. So if you stop or build a tolerance, your screwed. Talked to docs about it to rule out that problem. They said I would need to take alot more and on a more regular basis for it to be a problem.

    • naomi64
      naomi64 nikki1978

      Posted

      I feel the same Nikki. I will pray for all of us.  I took Gabapentin and since that I am not the same.  I also have neck issues. This is hard to figure out.  Stress does not help it as well. 
    • nikki1978
      nikki1978 Terry6872737

      Posted

      Hi Terry,

      ?Well, I'm not too thrilled about my visit.  I was having high hopes and still am trying to but was very much disappointed.  My doctor didn't spend much time with me or even really talk with me about things, just saying that my vestibular hypofunction will have ups and downs.  He wants me to stay on klonopin, even after he said one of his patients got in trouble with the police after taking klonopin and then went driving!!  He also seemed to rush me and this is after I waited an hour in his waiting room.  I am planning to see if I can visit with Johns Hopkins next year to help me more.  I mentioned to this doctor about how my brother has chiari malformation and he didn't even suggest having another MRI to check for it!  I'm sorry to be complaining, I'm just very disappointed but I'm trying not to show it to my family due to my daughter's fifth birthday party coming up this Sunday and Christmas a little over a week away.  I will update on future appointments.  How are you feeling lately?

    • Waffalobill
      Waffalobill nikki1978

      Posted

      You got the ole I am busy before the holidays, don't want to deal with you doc appointment. I hate those. Urologist tried that with me Tuesday. It didn't work. I asked the questions I wanted to ask and didn't accept any quick, off the cuff answers. Get tough. Don't say ok and let him leave. Your paying for his time even if it's 5 minutes or 25 minutes.

    • nikki1978
      nikki1978 naomi64

      Posted

      Hi Naomi,

      ​May I ask if the Gabapentin helps with anything?

    • Terry6872737
      Terry6872737 nikki1978

      Posted

      I'm certainly sorry to hear that. I remember going to an ENT 2 years ago and his advice to me was to pray about it and learn to live with it. If I had not already paid my co-pay I would have walked out without stopping. There is no compassion in the medical community for this condition.

      My issues began after a bad sinus infection as well. I spent almost 3 months going from doctor to doctor to get it addressed before the VN hit. I'm still not totally convinced that the residual that I have is not related to fluid in a sinus cavity that just doesn't drain effectively.

      I hope the best for us all. Have a great time with you daughter and hopefully you can experience a day of relief to enjoy it with her. My daughter's birthday is the 31st.

      Great to hear from you. Please do keep us updated.

    • naomi64
      naomi64 nikki1978

      Posted

      Yes then no. It made things worse.  I would not take this drug. It's horrible to get off. I think this is why I am still dizzy.

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