My husband has PSP and suffers all the time with a dreadful dizziness when he tells the doctors they seem surprised does any one else suffer in this way and have they found anything to help them. He is ok when he lays down but only when he lays down
dizziness: My husband has PSP and suffers... - PSP Association
dizziness
hi joey
i have cbd but i get very dizzy and very light headed
if i get up to quick or turn round to quick i fall over my gp
says its part of the disease so i went for holistic therapy
and had emotional freedom techique (eft) and it has
realey helped it hasnt cured it but its about 90% better
take care
ray
Where does one find out about eft?
![ray-wiffen-1958 profile image](https://images.hu-production.be/avatars/a8054c849778bd8d8b717e3dbbb13a9c_small@2x_100x100.jpg)
hi joey
you can find out about eft on the internet on
youtube you can teach your self to do it, its
quite easy i can do it on my self, some people
find it works some people dont but if you learn
it your self it dosent cost anything
Is your husband taking Sinemet or Rasagaline??
No I haven't even heard of them
A small number of people with PSP have dizzyness and it is worth discussing this with your specialist because there are a few medications that are worth trying if your husband wants to. Conversly some medications(including drugs usually given for Parkinsons) cause dizzyness so its worth getting the specialist to review the medications your husband is on. The doctor will also want to check his blood pressure.
My husband does have high blood pressure and is taking medication for that but we would be very interested in trying anything that would help this awful dizziness do you know the name of the medications?
Joey, me again. My dad also has shocking dizziness. It has been the biggest problem from the start, Nothing has helped so far I'm afriad. He too had terrible blood pressure at the start of this which suddenly subsided after a big diet, not sure if it was a co-incidence or not.
Joey, you aren't from the cheltenham area are you?
Yes surprise surprise
My husband has had dizziness for 6 years now and the doctors are not concerned which is very distressing. The dizziness has always been the most disturbing symptom and was his first symptom. He seems to lose something new everyday with this disease. He has lost all fine and gross motor skills. He has just had a peg tube inserted because of weight loss because he has severe difficulty swallowing and labored breathing while eating. He can still say yes and no. He moans all of the time. He falls at least 3 times a day as he wants to use his walker without assistance. He is safer in the wheelchair but he cant get out of it to go to the toilet. He gets up as soon as I turn my back. He is urine incontinent so most of the time does not make it to the toilet anyway. He also thinks that there is a monster in our bedroom closet. I would like to try the holistic treatment. Do you think it would be of any help to him? What is it called?
hi judy,
The holistic therapy is called Emotional freedom technique
you can learn to do it you self on the internet or you can find
a holistic therapist in your area that does it it works for some
people, it has worked for me its improved me by at least
60% i dont hardly full over at all now,my doctor told me
the meds where makeing me dizzy so they changed them
and it didnt make any diff at all, if you need any more info
from me just ask i will be glad to help
take care ray
Hi judy,
Hope you and your dad are keeping well just a quick
update i was telling you about EFTthe last time we spoke
i have just been reading your blog again iand i noticed
your husband is haveing trouble not getting to the toilet
on time, well a while back i was haveing to get up about
10 times a night to pee so i didnt get a good nights sleep
at all so i was sent to see the continence nurse she said
i have an over active bladder and some of it could be down
to the CBD so she put me on mediecation which helped a
bit but i was still getting up five times a night so i mentioned
it to the Holistic Therapist so we did some EFT on my
peeing problems and now most nights i only get up
1 time a night some times 2 so it does work for some
people,
take care
ray
My poor husband has had a major regression this past week. He has become both urine and feces incontinent. He can no longer ambulate and he seems to be very much out of it mentally. I keep trying to engage him in conversation inspite of all of this and he can answer with yes and no answers, but seems to enjoy stories that I tell him. He is young and his body is strong but he has progessed so quickly in the past year that I fear he is dying. I wish that I could speak to some caregivers who have experience with the late stage PSP. I am not getting many answers from the medical community, and this is so frightening as the progression is so swift. Has the EFT helped any patients who have progressed to the end stages? How long do I have left with my husband with how poorly he is progressing? I want to take him on a vacation but I am afraid to do so as he seems to get a new symptom on a daily basis. Has anyone seen this before?
hi judy,
sorry to here that your husband has had such
a bad week, i cant give you much info on the
late stages of psp, im afraid you wont get many
answers from the medical community because
they dont have any thats the trouble, ive been
told that the further you get with this disease
the harder it gets, i think EFT is quite new on the
scene so i dont realy no if its helped any body
in the end stages, if i was you id go on your
vacation while you can because if it is getting
worse by the day you need to do it now,
Hi Ray,
Thank you for your support and advice. I cant sleep as I have been up all night with my husband. He keeps waking to go to the bathroom. We use a handheld urinal now, but he is so afraid to wet his diaper that he wakes me up frequently. I am looking into a new product that will help with male incontinence called the liberty 3. I hope that it gives him some peace of mind. I think I will take him on the vacation. I wish that the medical community would get more versed on this awful disease.
Take care,
Judy
hi judy,
sorry to hear you had a bad night
isnt there any body that you can
get to keep a eye on your husband
while you grab a few hours sleep other
wise you will be getting ill your self then
who will look after you,the trouble with
psp/cbd its so rare that theres not much
information about it out there thats the
good thing about this web site at least
you can talk to people who are going
through the same thing .im glad you
have decided to take your vacation
it will do you both the world of good
you take care,
ray
I, too,have dizziness and I am wondering what percentage of people with PSP do.
I , too, have to lie down and then it goes away. It always is present when I am standing up.
I dont know how many people suffer from dizzyness but it is certainly a horrible symptom, perhaps it can be our next poll to find this out.
Do go back to your GP/ specialist to address this.
hi
i had lots of problems wiwth (iinner ear) labyrinthitis inj fact until diagnosed with PSP and it causes terrible dizziness a nd giiddiness whilst;looking upward ,tunrning round etc plus vojmiting until the drugs work
but have been free of it lately
jiilx