PPPD I have had this for 2 months

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I have had MDDS Mal De Debarquement syndrome since having a cruise to Alaska in May 2018

Then early November I had the most terrible feeling of dizziness in my head when I got up out of bed I called the nurse who then rang my dr who said come in tomorrow

She didnt really know thought it was PPPV

I went to vertigo clinic very expensive and have excercises to do

AS I already had MDDS there are no other drugs to give me I have tried everything.

I was already anxious so was taking effexor in the morning and lorazopam at night for sleep

I feel desperate I am 78

cant see any use in going on

Do any of you have this, I cant read if I do I get a terrible dizzy turn I have turned my computer and phone text up and put blue light filters on everything my glasses etc

I can only do a few minutes on the computer I cant read more than 2 lines in a book.

When reading up on this pppd it mentioned that it you have another type of vertigo illness PPPD is co morbid i.e. most likeley to get it

I now use a stick and a walker when out all of a sudden I have to use any help I can get. I pay for someone to do my housework and do my best to get meals for myself.

I am from New Zealand Mount Maunganui Tauranga .

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2 Replies

  • Posted

    Hi Dianne. I am so sorry to hear that you have joined the "Dizzy club"; a club of which I'm certain you'd rather not be a member.

    I started to experience problems after a short haul flight to Spain in 2015 and still have spells of dizziness almost 5 years later so I have to tell you that 2 months is very early days in terms of this affliction ( I can't think what else to call it). You may well be in for the long haul but I hope it helps you to know that there are others here who understand exactly what you are going through and the desperation you understandably feel. Your anxiety is a trademark of dizziness related conditions and those who have never experienced it are unlikely to fully comprehend what you are going through. As I said , you have many "friends" on here who have first hand experience and total understanding of the torment you are going through on a daily basis with a condition which if you're not careful can dominate your life. My condition has never been properly diagnosed only suggested as possibly labrynthitis, BPPV , Menieres disease, migraine related , a combination of one or more of the aforementioned or something as yet undiagnosed. I have identified some of my triggers as bright lights, monosodium glutamate, stress, air pressure changes related to the weather, looking at my phone or computer screen ( which when really playing up produces loud ringing in my ears), a lack of sleep or even too much sleep. Sleeping on my back completely flat with arms at my side and with no pillow helps me when symptoms are at their worst but this may not be the same for you. The only other thing which helped me immensely was the vestibular rehabilitation therapy which you have undertaken already . This helps to retrain your brain and it WILL eventually help your body to cope with your situation. Once you know the exercises you can do them yourself at home.

    It is extremely important that you don't stop doing them. At first you may feel even worse so you need someone to keep an eye out for you in case you fall but I can assure you that there is a light at the end of the long dark tunnel you are currently stuck in. Please never forget that. The very best of luck to you Dianne and if I can answer any questions you have , I will do my best to help you.

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