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How to cope with PPPD? Looking for advice and any suggestions

Posted , 14 users are following.

pat474
pat474

I have been diagnosed with PPPD Jan. 2018. I am now 19 years old have been kicked out of the Marines (which I thought my purpose in life was,) and had to drop out of Normandale college from this debilitating disease. As of right now I have lost two jobs in the last year and trying to maintaining one.

My symptoms include migraines, 24/7 dizziness (hallucination of patterns), vertigo, unable to focus my eyes (like trying to focus a camera lens), anxiety, depression, ect.

I have taken number of migraine Medications, SSR's, meclizine (up to 4 times a day), Anti-nausea (doesn't always work,) Prednison and valium for flare ups ( which seem constant,) and Excedrin migraine.

If anyone has experienced such things or have some advice I would appreciate it immensely. Knowing that I am not alone would be huge. Trying to maintain a solid mindset through all this adversity almost unendurable.

0 likes, 29 replies

29 Replies

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  • sab65033
    sab65033 pat474

    Posted

    I will go to my consultant and ask for this medication norotryptiline I hope it will help.

    I will let you know

    how long you had the medication for and what dose are you taking and how many times a day you taking the tablet for.

    let me know how you feel.

    best of luck

    sab

    • hmoosey
      hmoosey sab65033

      Posted

      most people start out at 10mg , like i did. i started aug last summer. i noticed almost immediately that it was workng. my brain fog went away. the dizziness when i moved my eyes or head went away. i went to 20 in a couple weeks, now its been a slow increase of 10 mg every few months. and each time there is an increase, a symptom goes away. like i noticed i could drive in my husband car without getting sick. i was a lot sicker than i even knew. right now i am on 60mg. in august ill probably go up to 70. my doctor says once all my symptoms are gone and my migraines are under control, there will be a slow taper down. eventually i will come off the meds. i feel good. i still have trouble in big crowds. i still have trouble in noisy places. but i am living my life, working, traveling, ect.

  • richard14906
    richard14906 pat474

    Posted

    Hi....I would suggest that you get a referral to an Ear, Nose, Throat Specialist. An ENT specialist will provide an initial diagnosis ( mine was Meniere's Disease) and then a referral to a "balance specialist". There will be a number of tests conducted, including an MRI, and an interview scheduled with the balance specialist. In my case, the balance specialist provided me with the PPPD diagnosis and a series of treatment options. Balance specialists are in scarce quantity, so it may take some time to get the appointment. Good luck.

    • sab65033
      sab65033 richard14906

      Posted

      Hi Richard149,

      in my case exactly what happen, I have seen many specialist Doctors finally seen a neurologist which done the test which last for 3 hours and they have confirmed that I have PPPD and not the Meniere's Disease as they are very semillar symptoms, I have been referred to balance therapy which is my second appointment this month as well been prescribed Candesartan tablet 4 mg which I have taken for 3 months and it should be increased but my GP cannot increase the dose as my blood pressure is always low, I have stopped the medication and I am trying to see the neurologist Dr again for the medication, but I am still suffering with the symptoms and forcing my self to go to work and live my life is not easy

      what treatment did you have and how you doing now and how long the treatment is for?

      please let me know and good luck.

  • richard14906
    richard14906 pat474

    Posted

    my lengthy reply was deleted by the administrator.....sorry.

  • vadim48648
    vadim48648 pat474

    Posted

    Does anyone knows a doctor who specializes in PPPD in New York, Long Island?

    • richard14906
      richard14906 vadim48648

      Posted

      Hi there ! You could check with your local hospital. Ask to see an Ear Nose and Throat specialist for a diagnosis. You will be referred to a "balance specialist" or "

      otolaryngologist "

  • Witje69
    Witje69 pat474

    Posted

    Dear Pat,

    At this forum you can see you are not the only one.

    I am coming from The Netherlands and try to answer in my best Englisch 😃

    My BPPD and PPPD started in August 2019.

    I went to several hospitals but no one can help me.

    I am 51 years young and want to live like everyone.

    But you now that is not possible any more 😦

    People can not see that i am not feeling good, it is like i am on a boat the whole day.

    I feel dizzy, sick, walk like i am drunk, problems to focus my eyes, headache, my neck hurts, etc.

    I am going to start training my body in conjunction with the psychologist.

    And hoping that it will helping me going furter.

    the chance that it heals completely is 0%, but i will try it.

    if it helps I will let you know.

    If you have any news please let me know.

    All very good luck!

    Greetz Monique

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