dizziness

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

[ray-wiffen-1958]

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

[Hidden in reply to ray-wiffen-1958]

Where does one find out about eft?

[ray-wiffen-1958 in reply to Hidden]

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

[riosenior]

Is your husband taking Sinemet or Rasagaline??

[Hidden in reply to riosenior]

No I haven't even heard of them

[PSPA_JillL]

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.

[Hidden in reply to PSPA_JillL]

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?

[daughter_Julie]

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?

[Hidden]

Yes surprise surprise

[judy1962]

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?

[ray-wiffen-1958 in reply to judy1962]

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

[ray-wiffen-1958 in reply to judy1962]

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

[judy1962 in reply to ray-wiffen-1958]

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?

[ray-wiffen-1958 in reply to judy1962]

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,

[judy1962 in reply to ray-wiffen-1958]

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

[ray-wiffen-1958 in reply to judy1962]

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

[LyndaEllis]

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.

[PSPA_JillL]

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.

[jillannf6]

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