Dizziness upon arising from bed

Do all of you have extreme dizziness when arising? It diminishes as the day progresses as does the gait problems. I never see any comments about dizziness so I am baffled. Am I the only one?

John USA

17 Replies

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  • Is this happening to you? Are you diagnosed with PSP....have you been eating properly, getting enough hydration. You say it lasts throughout the day but gets better...Do you have a sinus or ear infection? Have you been diagnosed with vertigo? Do you take any drugs, prescription or otherwise? These are questons that you might ask yourself or the person wiht PSP....then go to your dr and discuss these answers with them....medical tests etc might need to be done ...

    That's all I got good luck

    AVB

  • Definitely PSP. No infections. Doctor cannot treat dizziness. Just waiting to die like all of us. I would rather die in my sleep like my father. He had a nice dignified death. This progression is emotionally draining. I have read a lot of books about NDE's, near death experiences, and they help me to anticipate a life in an afterlife that is beautiful but I still fear dying. I am a believer and a doubter at the same time. We do not talk about an afterlife and I wonder why we do not. There is a book called Proof of Heaven by Doctor Eben Alexander that talks of his life in the hereafter where he chronicles his life in heaven as his body was clinically dead for a week. He is a neurosurgeon who came back to write a book about what he saw. He is no dummy and is considered a medical miracle. He started a site called ETERNIA if you wish to check it out.

  • My guy used to suffer from dizziness as you describe. It passed on its own after a very long time. The neurologist had him checked for blood pressure issues just to eliminate that, and it was decided that psp is was to blame. I am sorry about your diagnosis. It's a hard road. We are here for you and care about you. We are all in this together. Peace, Easterncedar

  • Des has blood pressure tests and after having PSP it took a while for the blood pressure to settle after moving from lying to sitting and again to standing.Secret is to sit up take time when ready stand but stay still until ready again.So many carers want people to get up and go GIVE IT TIME and you will be safer!Px

  • So sorry to hear of your diagnosis, John- it's a terrible condition to live with and I hope you have the support of your loved ones as you go through this daily battle. My Dad suffers from extreme fatigue and dizziness almost on a daily basis . It's dangerous at times as these bouts catch everyone totally off guard and we now have a trail of deck chairs all across our house as it's difficult for anyone to physically stop his fall. PSP affects different people differently, and for my Dad the muscles of the limbs and stomach are currently the worst affected. His eye sight has also deteriorated considerably. My heart goes out to each one of you and pray that a cure is found soon xxxx

  • John many causes of dizziness that not PSP (low blood pressure, ear wax, meniers disease, MS etc). You need to be checked out for the other problems.

    Saying this M started her PSP symptoms in 2008 saying she had a mussiness when trying to dance which was not actual dizziness but was (if you know What I mean), it removed her confidence in dance movement as it made her scared of falling. Actual falls not until 2011. She described it as mussiness because not exactly dizzy but disconnect between head and body movement. Yes the mussiness did get better if she persevered or took rest.

    If you have PSP keep in touch and best of luck but if you are trying to fit your symptoms to PSP do not panic get checked out and hopefully it will be something easier than the life sentence which is PSP. Tim

  • Hi John, You're not alone. I have those same "dizzy" spells throughout the day. It can be a low blood pressure... you need to get that checked out. PSP is probably the culprit though. Gait problems can sometimes be managed through exercise... the more the muscles are engaged, they're less likely to contract or atrophy. Sometimes Botox is effective for muscle contraction... I receive it for my right foot and my in my eyelids for blepharospasms. I consider myself fortunate that I still have my mobility, albeit challenging sometimes. Hope you some useful information... there is plenty of it on this forum.

  • Dizziness was the first symptom my husband complained about, long before diagnosis. He had all the checks mentioned. He still complains of it when he wakes.

    Jean x

  • You are not alone on this one John. It is PSP. My guy who passed away last month suffered with lots of dizziness and yes by late afternoon/dinner time, he was much better. Some days he was okay when he first woke, but right about an hour later from sitting up, the dizziness kicked in. He would tell me as soon as it started. I always wondered if it had something to do with being in the upright position--something being pinched or a blockage of blood flow or poor circulation or something. One thing for sure is he never complained about dizziness while lying down. He was relieved of pain and dizziness while lying down so he spent many hours resting in that position. He was also the most talkative while lying down too. Does your voice improve while lying down? How about dizziness? This PSP is such a strange disease. We need a cure!!!

    Hang in there John and prayers going your way.

    Nikkie

  • My voice is fine. The dizziness is the pits and I am better when lying down.

  • My husband also suffers from dizziness. When he sits up he has it, when he bends over and lays down. Sometimes just sitting causes it. It goes away sometimes after being still. He did have crystals that were dislodged from his ears. Yes this is a real thing and there is a term for it, but i can't remember what it's called. His neurologist had him sit up then lay down quickly (sounds easy, but there's a way to do it that fixes the crystals) That helped a lot, but didn't get rid of all the dizziness. I suspect that part is just the PSP. He also describes his unbalance as feeling sort of dizzy. Have your dr. check into the crystal in your ears, maybe that will help with some of the dizziness, can't hurt to try. I understand the progression is emotionally draining. It certainly is for my husband. He has a lot of dementia that comes and goes with this disease also, which he is aware of. That probably wears him out the most, along with his eyes not working, and not being able to "find" the words he wants to use.

    Keep your faith strong. I believe everyone questions their faith at some point, especially when something like this becomes part of our lives. A simple and easy life is not guaranteed, but Heaven certainly is...and I've read it's a pretty amazing place to end up!

    LynnO

  • Nikkie,

    I'm so sorry to hear about your husbands passing. I checked back on your posts, and we were traveling at that time. I hope that you and your family are finding some peace knowing that your husband is not longer suffering. God's blessings to your and your children.

    LynnO

  • Thank you LynnO. It has been a tough 1.5 months and today was just a very emotional day. I know it will get easier but I just want to fast forward through this pain. Thanks for your blessings.

    XOXO

    Nikkie

  • Dizziness was probably my husbands first symptom

    Debbie

  • It does no harm to rule out other causes, like inner ear infection, glaucoma or sudden blood pressure drop, which can all cause dizziness on rising. Even ordinary dehydration from 8 hours asleep can do it. Wouldn't it be nice if it were something treatable? Having psp doesn't give one immunity from other things, alas, as our neurologist told us. Sure, it's likely to be psp, but why not eliminate the other possibilities on the off chance? Dizziness is miserable. Good luck. I'm rooting for you, John. Peace, ec

  • I TOO GET VERY DIZZY WHEN I FIRST GET UP IN THE MORNING -- IT GOES AWAY AFTER I HAVE BEEN HELPED TO WALK DOWN THE CORRIDOR TO MY CHAIR.... IT THEN COMES BACK SOMETIMES WHEN I GET UP TO GO TO THE LOO THE FIST FEW TIMES THEN IT GOES AWAY ...

  • Hi, Sharon. Always nice to see your smiling face here! sorry about the dizziness, though. PSP comes at a person from all directions, blast it.

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