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

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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.

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  • Posted

    been fighting the vertigo and dizziness for 12 years. the problem is its a symptom not a disease. i finally was diagnosed with menieres disease. waited over 2 years for a disability hearing. almost 3 years ago it got way worse. cant work, cant drive. have had several treatments including endolymphatic sac decompression surgery. basically they drilled a hole in my head and put in a shunt. i am still having problems. lost a job i had for 27 years.

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    • Posted

      my condition has improved since the surgery. not as much as i would like. i have alot of bad days still. riding in a car is pure hell. i have menieres very bad tho. alot of ppl dont have it so severe as i do. most can control it threw diet,diuretics or even injections into the inner ear. they didnt help me at all.

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  • Posted

    Hello can I ask what tests you had to be diagnosed with pppd? I went though all this last yr. and came across pppd. told my doc about it and they had no idea what I was talking about. but the eye issues, off balance, drunk like state is what I had. walking was an issue. like I was on sponges. sensitive to light, and hard to drive. I went through hell. just this yr ive started to feel better. but the anxiety it leaves behind is a messs. I didn't have bad headaches, but all the other symptoms were terrible. pattern carpets and crowded places were hard too.

    I know its a new diagnosis, so a lot of docs font know about it. I'm in ontario canada...37 yr old female with no health issues..

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    • Posted

      i was treated at the mayo clinic. i received a lumbar puncture(with horrible side effects), had an EEG. i saw a neurologist, neuro-optimologist, an vertigo and inner ear specialist which determined i did not have an autoimmune disorder. All together they came up with PPPD.

      As of now I am on new trials of medication which are not working and currently seeing new doctors and repeating many testing.

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    • Posted

      I had tons of tests and no Dx until I went to a Neuro Ear Dr at a city hospital (Phila). The Dr. who Dx me has PPPD also. Prior I had a VNG balance test done by a regular ENT. Part of it was abnormal but he couldn't diagnose me. My family Dr. ordered an EEG, which was abnormal but non specific. Again no Dx. Had 2 brain MRI scans to r/o tumors. Mine started after severe benign positional vertigo. Later I developed ringing in my ears. Then I developed stomach issues. Now the Drs say the vestibular nerve gets triggered. I have tried an SSRI but it didn't help. Still searching for a treatment. But I'm less anxious about it and it is less debilitating now. I also meditate which helps some.

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  • Posted

    many times we are misdiagnosed with these disorders. you mention migraines. it is possible you may have vestibular migraines. not pppd. has any doctor mentioned this to you? you are taking many of the medications i was taking before i was diagnosed properly, with vestibular migraines. look it up on webmd to compare your symptoms. you mention the marines- you live in USA? i ask because of different health care systems in different countries. if you do live in USA- most major cities have a "dizzy clinic" at the major hospital. in USA- at the dizzy clinics there are doctors that specialize in this field. otolaryngologist. you should have caloric testing, blood work, vestibular testing. even if you have pppd, this should have been done. most PCP, regular nuerologist, ENT- are limited in knowledge. you are not alone however- what i have learned is that you are going to have to push doctors. they may say you will get better with time. you wont , not without the right medication. i was misdiagnosed 2x before i finally was diagnosed properly. it wasnt a doctor who mentioned vestibular migraines, i read it here on this forum. i was so sick, i went back to the ENT- begged her to try to treat me for vestibular migraines. thank God she did. she prescribed me norotryptiline and made a referral to the dizzy clinic, otolaryngologist. you can do this, you have to push. a regular nuerologist told me that i might be disabled forever. crap. i cried, then i pushed more to find out what has happened to me. she was chocking me up as a lost cause, yet, there was all this testing in my major city that she never mentioned. either she didnt care or was uneducated. good luck, look into it, you can get better. even if you ask your PCP- to try norotryptiline to see if it makes a difference before you find the dizzy clinic, it worked for me.

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    • Posted

      i have been to the dizzy center but they referred me out and said they could not do anymore for me. norotryptalin is like the cousin of amnytriptalin . but that is something i want to try it.

      losing hope is the biggest problem for me. Most doctors i have seen werent optimistic. knowing someone out there is fighting this and not giving up is so huge for me. The time you took to reply to this is meaningful and is really what i needed.

      thank you

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  • Posted

    and Pat, i was at the point where i was going to lose my job that i have had for decades. i couldnt grocery shop, walk straight, talk normal, i was also referred to vestibular PT- it was so nice to have someone who understood me. it helped with my thinking and balance and anxiety. which i never had prior to this. i was on mecclizine all day and valium and zofran. i dont take any of it now. dont need it. it was the brain fog and confusion, vertigo, that was so scary. it felt like a brain injury. it wasnt. but i also had an MRI- catscans. if you havent had these either, you really need to find the right doctor. these tests rule out serious brain issues. they thought i had a stroke. brain bleed. i didnt but that is what i presented as. you need so much testing.

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    • Posted

      i have had all this brain scan and tests done and I am on those exact medications right now. i have tried vestibular PT. but it gets so bad that cannot do the exercises. Although I still try.

      once again to know someone that has gone through this and is beating it is doing what i have been thinking close to impossible. all my doctors say i will have this the rest of my life. where you are know is my goal to be!

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    • Posted

      i think you should ask to try treatment for vestibular migraines. if all your testing came back ok, it is very possible you have this. all my testing came back normal, which helped my doctor be sure it was the vestibular migraines. from what i have learned yes, amitryptiline is a med they use, however it is not as effective as norotryptiline. for me, i had an immediate response to it. i knew immediately i was going to finally be ok. i would not accept the doctors telling me i was going to be like this forever. especially when they couldnt tell me what was really wrong with me. i had an ENT- lovely doctor who said we were going outside her expertise, but she gave me the medication and set up an appt with the otolaryngologist. they saved me. but you have to push them Pat, dont accept this. if i had accepted it, i would still be a confused mess. its so scary i know. to all of a sudden have this come on and no one who can tell you whats happening and it will go away. so many of us have had several diagnosis before the correct one. i had BPPV- i will be fine in a couple of weeks. nope, back in hospital worse, then diagnosed with vestibular nueritis, i will be ok in a month or 2. nope, worse. three months later, i was told, i will probably be disabled forever. and because i said F U- i am not accepting this, i am better now. so many of these diagnosis are really clinical, they overlap each other and rule out certain ones like menieres, labs, ect. then they stick a label on you. there was testing to see if my nerve in my ear was damaged or infected. they gave me this diagnosis and never did the testing. when i finally had it, from the otolaryngologist, no nerve problem. ask your doctor to try treatment to vestibular migraines. what do you have to lose? i had to ask, in my brain fog and confusion. i was in survival mode. if you have VM- all these meds you are taking are not going to fix it. you can get better, but you have to fight pat. i know you are tired. i know you are confused and scared. i know because i was. i am not anymore. i am ok. you can be too.

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  • Posted

    Hi Pat,

    I have been suffering with the same symptoms nearly for two years.

    I have seen many GPs,Specialist Neurologist,ENT . I had 5 Head MRI, Ear MRI all normal and do many blood test normal as well.

    a last I have been diagnosed with PPPD and vestibular migraine last week, so they prescribed me Candestran which I will start taking on after 24th April as I cannot take it now just in case will cause me any complication on my minor surgery on the 24th April as this medication is for heart failure and blood pressure but apparently it works for migraine as well.

    my story is long and I suffered a lot but I keep strong and push to get my life back.

    I will let you know once I start my medication as well as therapy exercise too.

    I wish you a quick recovery.

    all the best.

    sab

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  • Posted

    Hi, Pat I was suffering for 2 years with the same symptoms and I just been diagnosed with PPPD, my Neurologist give me Candedartan 4mg to try once a day for my chronic migraine which am taking it for last 3 months but didn't work.

    I will start balance therapy in few weeks I hope it will work.

    is driving me mad.

    please keep me updated, and I will as well.

    body if luck

    sab

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    • Posted

      it sounds like you have been having a very difficult time, like i did. the medication (for me) was the best choice. i dont think i would be ok today without it. its not forever. but you need to do something right? for me, its been since may 2018. i started the meds in august a very slow increase. and i have a life sab. what is scaring you so much about it vs. all the symptoms that you experience every day?

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    • Posted

      is it candesartan which made you feel better?

      if it is than is every body is different for me definitely is not the medication for me because I have taken it for nearly 3 months with no benefit and I've got worst my body won't tolerated any more,let me know

      sab

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    • Posted

      it is everyone is different from what ive found. my doctor told me this as well. no, ive never taken candestatan. i was put on norotryptiline. my blood pressure was sky high so i was also put on a beta blocker. metapropol. but, i really noticed pretty quickly that the norotryptiline was working. by the end of the first week, i had no dizziness and no brain fog. your body is struggling to stay upright your brain is working overtime to do normal things. i would make a follow up with your doctor and ask if another med could be tried or explain that you are worse not better. you have seen no improvement at all. my doctor did tell me i was very lucky to respond so quickly to the first medication tried. and i do feel lucky. i thought i was dying.

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    • Posted

      exactly, I thought I was dying too, every day, I use to say this is it, is my last day .

      I will check with my consultant for new medication.

      I hope one day we will be all well and come back to our selves

      best of luck

      sab

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    • Posted

      you arent dying but i know you feel it. i felt my brain disolving. that was the worst. my brain wasnt working right. i was no longer me. i remember when i started the noro, after a couple days ect i looked at my husband and said, i feel like me right now. it was huge. i have felt like me since august. i have had set backs, but this is when i am doing something that causes a trigger. i still have difficulty in a crowd. and noise. but every med increase a symptom goes away. i have found that you really need to ask for this treatment. so ask. i dont know the med but 3 months, i was back to working full time, and living my life. ask to try norotryptiline.

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