1. Community
  2. Ears, nose, throat and mouth
  3. Vertigo and Dizziness

Undiagnosed dizzy symptoms, long wait times and Doctors

Posted , 8 users are following.

Amushka
Amushka

Hi, I have been suffering since last October with dizziness and other symptoms. Initially, my blood pressure was slightly raised, and Dr. thought this might have been contributing. This is now under control, but symptoms are getting worse. I am suffering from dizziness most of the time, this is made worse by flickering computer screens, flashy lights/rapid changes in light levels (even in the car, trees at the side of the road causing shadow can do it), hyperacusis (background sounds become incredibly invasive and irritating), and tinnitus. I feel nauseous most of the time, but have not actually been vomiting. Doctor initially prescribed cinnarizine, but it didn't really do anything. I now have betahistine, which seems to help but not eliminate some of the dizziness. I feel unstable walking, particularly when I've just stood up, and end up misjudging doorways and entryways. To turn and look at something behind me, I find that I'm turning my whole body (this was pointed out to me by my cousin) rather than just my eyes or head.

My GP said at my last visit that he would sign me off work, but I feel like I'd be a fraud to do so. I'm waiting for and ENT appointment, but on speaking to them today, they're now making appointments for those referred on 20th February, and my referral was 4th March, so apparently it will be another 2 weeks for a letter then probably 6 weeks for an appointment! It seems such a long way away, and I'm worried that I'd get signed off sick by the doctor and then the ENT people say there's nothing wrong and it's all in my head, so I'd look like I've just been time wasting.

Any advice?

0 likes, 12 replies

12 Replies

  • Roseann
    Roseann Amushka

    Posted

    Hi Amushka

    Your symptoms must be very debilitating and you are definitely NOT a fraud.  If you had any money it would be good to see the ENT specialist privately (usually costs around £250 for a private appointment) and it's usually much quicker than waiting for NHS.  Your GP would need to refer you privately if this idea is appealing.  If you have no joy with ENT person then see a Neurologist just to rule out other causes.  Wishing you luck with all of this, it's horrible to be so dizzy and unstable in your everyday life and it is a REAL condition.  Take care.

    • Amushka
      Amushka Roseann

      Posted

      Thankyou for the reassuring post. I may see if I can get some parental help with costs for private appointment. Another 8 weeks after I've been waiting 6 already is not appealing! 
  • tania15
    tania15 Amushka

    Posted

    Hi Amushka, sorry about your condition. I met someone with very simmilar symptoms to yours . It was here so if you read previous discussions you probably find her (the girl) She went  to ENT (privatelly) I done it privately as well cost £100 for first appoitment then £80 for following, also private ENT will sent you to do MRI which you can do with NHS for free but much faster. Also if you have high blood pressure I would ask you GP to check your heart, some times people have dizzines when heart stoped read this article in Daily mail http://www.dailymail.co.uk/health/article-2542909/When-dizzy-spells-mean-heart-stopped-Doctors-thought-Kitty-young-fit-heart-problem-But-wrong.html

    Also I would ask your GP to send you to neurologist  aftre ENT.

    Good luck .

  • rocksolid
    rocksolid Amushka

    Posted

    First off, It's not in your head. I have been dizzy for 3 yrs. It turns out I had an inner ear issue. Make sure they test you for that. I also have TMJ which I have been told can cause you to be lightheaded. Good luck and I hope you feel better.
    • Amushka
      Amushka rocksolid

      Posted

      Thanks rocksolid. I'm hoping that as it's the ENT they will check the inner ear. GP thinks they may MRI. 
  • eightof8
    eightof8 Amushka

    Posted

    hi amushka,

    sorry you are going thru that. but hang in there, sometimes it takes a long time for our bodies to heal themselves, especially in these cases. have you lokked at the VEDA website? it is a U.S. based organization that has alot of helpful info about the vestibular system. best advice to you is: go into your docs office as a well informed patient, research as much as you can your symptoms, take notes, and ask questions, demand tests. No one cares more about your health than yourself (w/exception of close loved ones). doctors visits are turning into patient mills...in and out as soon as possible. good for doc, not the patient...good luck, keep me posted.

    • Amushka
      Amushka eightof8

      Posted

      Hi 8, I'll take a look at that VEDA site, thankyou. GP cannot do any more to diagnose (he's leaning towards menieres but needs confirmation or elimination as a factor), so waiting now for the ENT, but I'll make sure I'm as well informed as I can be! If it gets worse in the meantime I guess I'll have to go for the signed off sick option, but hoping to avoid that!
    • Patricia_-_Chevron_Osteotomy_right_foot_25th_March
      Patricia_-_Chevron_Osteotomy_right_foot_25th_March Amushka

      Posted

      Hi Amushka, your symtoms sound very similar to mine. After many years of misdiagnosis ( usually Menieres as that seems to be the fall back when the Dr doesn't know what else to say... ) I eventually went to a neurologist who sent me for a videonystagmography test. The diagnosis from that came back as Vestibular Migraine and I was given medication for 6 mths. I weaned myself off that in January 2013 and hadn't had an attack since, till a month ago I had a bunion repair op and the anaesthetic and codeine etc triggered another attack which lasted for a week. A very useful book to read is Heal Your Headache by David Buchholz which expains in laymen terms the migraine process and what triggers it - with Vestibular Migraine you are getting dizzy instead of getting the headache. Hope you get some answers, it is so debilitating and hard to explain to people!
  • Amushka
    Amushka

    Posted

    So, I eventually got my diagnosis of BPPV. Apparently it's my right side which is affected the worst (helps to explain why I keep bumping into doors/walls etc!)

    The consultant at the hospital did some tests and the Epley on me. From what both she and my GP have said, there should have been some improvement following on from that (though she did say that the first few days might be rough). It's now almost 4 weeks since my appointment, I've been doing the Cooksey Cawthorne exercises I was given - I still haven't moved off the most basic level exercises, and it doesn't seem to be improving. Does anyone else have any experience of this? I'll be back for another appointment with the consultant in a few weeks as she put me on a 3 month callback. At the moment though I'm too dizzy to drive, it makes work extremely difficult (but I'd feel bad for not at least trying to go in and work), and it's making me so tired that I have little energy left for my daughter at home. Has anyone found that the BPPV goes away with the exercises?

  • AnnF
    AnnF Amushka

    Posted

    Hi Amushka,  I've been away a lot but just got back and saw your post. Sorry you have joined the ranks amoung postional vertigo suffers. I have never heard of the Cooksey Cawthorne exerice before. I will have to read up on it. From what I know and  have read the Epley and Semont manuevers are best for dealing with bppv related vertigo. From expereince it is helpful to take something for neasua before hand if you get it because these manuevers can make your dizziness worse at first. You have to repeat these manuevers a few times a day for a few days. There are a lot of veides showing you how to do this but I recommed doing it once with your doctor or at least with a friend if your doctor doesn't know about them. I found sleeping on a simbalance pillow to be helpful afterwards. If you just want to learn more about bppv check out their facebook page, they offer a lot of good articles.     
    • Amushka
      Amushka AnnF

      Posted

      Hi nodizzy

      The ENT consultant did the Dix-Hallpike test and Epley manouvre at hospital. Looking at various vertigo related sites, the Cooksey Cawthorne are a common recommendation. As they were given to me by the ENT consultant, I'm giving them a go, but they haven't had much, if any, effect yet. There are better days and worse days. Today is one of the latter, so screen is difficult to look at, feeling incredibly offbalance. ENT said to sleep on my left side (my BPPV is worse on the right side)

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.