dizzy and scared: I was tlod that I have PD... - Cure Parkinson's

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dizzy and scared

allentimtim profile image
37 Replies

I was tlod that I have PD and I have been feeling dizzy and I am falling down. It seems to be getting worst everyday. and to tell you the truth I am scared

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allentimtim profile image
allentimtim
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37 Replies

Welcome to the PD family. I understand.

allentimtim profile image
allentimtim in reply to

Brother it scares the shit out of me, i wish I knew what was next. I have bladder problems, I am beeing seen for PTSD ,,,,,, I dont need any more depression. 63 years old and been active my whole life and now I cant work 5 minutes.

andrewij profile image
andrewij in reply toallentimtim

These reactions are "normal", try not to be too frightened. PD doesn't mean the end, however it is life-changing. My feeling is that you need to engage with other patients to see what positive steps you can take to improve your well-being and mindset. Good luck to you.

Roch369 profile image
Roch369 in reply toandrewij

Thank you for posting this- my bf was pd

donjuan61 profile image
donjuan61 in reply toallentimtim

Hi,

Stress will make your symptoms worse! I was diagnosed with P D in 1985 when I was 29 years old! I worked up until 9 years ago and I get around fairly well yet.Although now when I go out I use a cane,but around home I don't.I try to keep upbeat because attitude has a lot to do with your state of mind.Try and think of the things you can still do and don't focus on the things you can't. My wife has a saying that I can do everything ,just not all the time.

Don

ParkinsonSpouse profile image
ParkinsonSpouse

My hubby has had PD about 10 years now. There are times he gets extremely dizzy. He has learned to immediately sit down...wherever he is...he'll sit on the floor if he has to. I'm not sure this link will work for you, but I replied to a similar question a few days ago. Clara-Bo-Bara has 52 replies to her question about being dizzy. Maybe one of those replies will help you. He has found relief with deep stroke massage to trigger points in his neck.

healthunlocked.com/parkinso...

Also, check out this Parkinson's website especially look at the section 'Learn Online, Over 40 Seminars"

I'm sorry, I hope you can find relief.

ParkinsonSpouse profile image
ParkinsonSpouse in reply toParkinsonSpouse

oops, I forgot the second link; this will take you to the Parkinson's Disease Foundation, check out the "Learn Online" section.

pdf.org/

in reply toParkinsonSpouse

Still dizzy. :)

allentimtim profile image
allentimtim in reply to

very much so

rhyspeace12 profile image
rhyspeace12

My husband had a great problem with dizziness until he started drinking a lot more water and it stopped.

NRyan profile image
NRyan in reply torhyspeace12

When you drink fluids, it raises your blood pressure. dizziness can be caused by low blood pressure. its a good reminder to drink enough fluids! The body thinks of everything.

allentimtim profile image
allentimtim in reply toNRyan

my pressure is always low, I have had two heart attacks two stents, I have PTSD and many other things, so I think the meds are working against each other. but I need all of them. I am trying not to aggrravate the PD to have a chance to increase the systoms

Allyn profile image
Allyn in reply torhyspeace12

I think water is very important and most people - especially as we age - are dehydrated at best. Water will also help with cramps in the legs

aspergerian profile image
aspergerian in reply toAllyn

Increasing my water has made my leg cramps virtually go away, unless I"m not careful. Less magnesium, too.

Beckey profile image
Beckey

When I first saw a movement disorders specialist, I felt utterly desperate. My tremor was over the top and I had a lot of pain. When I heard there was a good chance I had Parkinson's, my desperation turned to abject terror. This email group helped me come down from the ceiling.

Let me ask you a couple questions if you don't mind. What kind of work did you do? And what kind of exercise do you get?

allentimtim profile image
allentimtim in reply toBeckey

I am retired, and have always been in the outdoors. hiking , fishing , hunting , with my kids and friends

Beckey profile image
Beckey in reply toallentimtim

Well ... I don't know if a dedicated outdoorsman like yourself will feel much enthusiasm for some of these indoors kinds of exercise, but high-intensity exercise, in particular interval training, has been shown to slow down the progression of PD.

Have you heard of Rock Steady Boxing? It was developed by an Indiana lawyer named Scott Newman, who was really struggling with his PD symptoms when a co-worker (and former Golden Gloves champion) invited Scott along for a workout in his gym. Scott said he was ready for an ambulance over the first few weeks. Then, about six weeks in, he held up one arm and shouted, "Look! Rock steady!" No tremor!

Thus Rock Steady Boxing was born, and now serves people with PD in 300 cities including in the U.K., Australia and New Zealand. A boxing gym is about the last place on earth I ever thought I'd find myself, but it's been great. I hurt my wrist when I fell out of bed one night and couldn't go for a while -- and boy, did I feel the difference! :-(

I've also heard great things about Crossfit training -- Bailey from Texas can tell you more about that (He's been a role model for a lot of us). And John Pepper has had amazing results from speed walking.

I guess the key is to pick something you enjoy enough to do a good three times a week. Don't give up.

ddmagee1 profile image
ddmagee1

allentimtim, I went through the same thing, including many more symptoms, and my GP never told me what he suspected. I was really getting scared, because I had some real dizziness and bad falls. In addition I had such bad resting and essential tremors, that I couldn’t even put a screw in a wall, and it took forever for me to button my shirt and put my belt on. Then I started getting freezing moments, when I couldn’t move. One time that happened when I was walking my dog, and the dog pulled on me and I fell face forward on the street pavement. I ended up with blunt force trauma to my head, and a concussion. My head was bleeding with a bad contusion. I ended up having two black eyes. I could not stop myself from falling-I was literally frozen in place, and fell like a block of wood. Still no PD diagnosis! I didn’t know what was wrong? I was scared. The Dr. didn’t have any explanation, even after MRI, brain scan, heart tests, EEG. That was the last straw. We lived in a small town, with no resident specialists in Neurology. At that time, I didn’t know anything about Parkinson’s disease. I had heard the name, and that was about it. We decided to move to a big city, where there is a major regional medical center, also, where my daughter and her family live. Whatever this was, it was getting worse, and my wife had the feeling that there was something seriously wrong. So my son-in-law recommended a well respected GP. I went to him and he thoroughly examined me and observed my difficulties for a few months. He noticed signs of stiffness and rigidity and gait, so he diagnosed me with Ataxia (I had a previous problem with cerebellar cranial root compression). Finally, after a few more months, I was having pronounced resting tremor and more difficulty walking, so he said that he really thought that I had Parkinson’s and he immediately called the neurologist and made an appointment for me, for the next day. When I went to the neurologist the next day, after testing, ruling out other disorders, and having a trial run of levodopa, he diagnosed me with PD! By that time, the PD had progressed from one side to both sides, and now I am in the end of the second stage-beginning of the third stage of PD. I know this has been a very lengthy ‘diary’ of my life with PD; however, I wanted to share this with you so that you would know that you are not alone in being very scared of what’s happening when you get dizzy and fall down etc. I understand and want you to know that we are here for you, as you go through this journey.

in reply toddmagee1

Why does it take so long for doctors to see the obvious symptoms? It took years and many neurologists to see what my doctor said, whice was, "It's obvious you have Parkinson's." i burst into tears, I was so happy. I had been told it was "All in my head," which it is!

Beckey profile image
Beckey in reply to

Clara, that is SO insulting! And maddeningly, too common. :-(

in reply toBeckey

Do some of them even go to medical school? High school?

ddmagee1 profile image
ddmagee1 in reply to

I must say, my first GP made me feel like it was all in my head, too ( psychological, that is ). Really, Doctors should not do that to patients- especially those patients, like me, with no history of malingering. If I would have had been on Sinemet a few years earlier, I may not have had to suffer as much as I did, and got injured, like I did. I am not happy that I have PD, but, at least, for now, the Sinemet is giving me some symptomatic relief and maybe I can aggressively search for a way to slow down the progression of PD.

allentimtim profile image
allentimtim in reply toddmagee1

Thank you I to have both sides of my body effected, I fell and broke my ankle, have fallen down stairs, blacked out, my hand writting is gone, and haveing a hard time with simple things like spelling. I use this computor for everything it takes a long time to type and research handling the mouse is very arggarvating.

vincea profile image
vincea

That happened to me this past summer . . . no matter what I was doing, I got very light-headed . . . it seemed every five minutes or so I was getting dizzy . . . feeling like I was going to pass out. My wife, a friend of hers, and I were landscaping our backyard in 104-degree summer heat. I kept getting dizzy every time I bent over to do something - I too became very scared, thinking a heart-attack was imminent. It feelings wouldn't stop. I didn't help much with the yard work.

I would also hit my knees when I felt the condition coming on - wherever I was - I didn't want to fall and break a hip, or hit my head on something! This kept up for days. Bottomline, I discovered my meds 'could' be causing the lightheadedness. I take three meds for my PD - Carbo/Levo, Amantadine, and Clonazepam. Between the times that I was experiencing the lightheadedness episodes, I did some research and discovered that all three meds 'could' be the cause of the lightheadedness. One of them, I believe the amantadine, was the culprit. I read that amantadine 'could' cause dizziness and lightheadedness in hot weather when the body heats up . . . it also mentioned that over-heating during sports could lead to the same condition.

The next weekend, we continued in the backyard, I only took C/L that morning, and the issue did not re-occur. Occasionally I still get lightheaded/dizzy if I stand up too quickly, but I can deal with that!

park_bear profile image
park_bear

Your first order of business is to get a blood pressure cuff and compare your blood pressure standing vs lying down. If your standing BP is low that is a sign of orthostatic hypotension, meaning your brain is not getting enough blood which is why you are getting dizzy and falling down.

If you do not care to do this yourself go to the doctor and get it checked.

You need to know what is going on here and saying "PD" is not enough.

in reply topark_bear

My pressure was so low standing the doctor's cuff kept reading "error." Now that I'm taking Midodrine twice a day, I no longer have the low numbers, but I'm dizzier than ever. Could it be my Paxil 20mg?

park_bear profile image
park_bear in reply to

The list of side effects provided by pharma is worthless since they include everything. So we go here: askapatient.com/viewrating....

and see that dizzyness comes up quite a bit in patient reports. So yes, paxil could very well be causing it. You should also check your other meds using this site and see how they compare.

in reply topark_bear

Thank you so much for this! I have felt for a long time that ai am being forced to take my poison every morning. I hate that little pill! I'm trying ONCE AGAIN to get off of it. I haven't much hope. I've been on it 19 years...

park_bear profile image
park_bear in reply to

Taper slowly!

in reply topark_bear

My new shrink wants me to buck up and get off it in a couple of months. I have some serious anxiety about this.

allentimtim profile image
allentimtim in reply topark_bear

I am very aware of my blood pressure because I have a-fib and have had an extened history with that. heart attacks I have had two now have two stents, my history is to large to put here so I thank you for the advice and take care

kievian profile image
kievian

Hi

We need nore information:

1. What gender are you?

2. What is your age? (30s, 40s, 50s, 60s, etc?)

3. What was your diagnosis (PD, Parkinsonism, MSA, PSP......?)

4. What tests were made (blood, MRI scan, Sinemet test ....?

5. Was it definite or "probably"? (It's very unlikely that a definite diagnosis could have been based on just a clinical examination.)6. What symptom(s) made go to the doctor

There is an almost infinite variety of "Parkinson's" conditions, in many of which your symptoms will be a collection fron a total of about 100. The probabilitty of having a particular symptom will depend partly on the type of PD that you have, partly on chance and partly on what steps (if there are any) that you take to avoid it.

allentimtim profile image
allentimtim in reply tokievian

I am 63 years old, male PD was the diagnosis, I have had 3 MRI and to many blood test to count, the falling down and my trumors at first the doctors though it was a form of (dont mind the spelling) epalasie because my father had it, I also had a brain scan for that. Meds so far is what I am dealing with, some of my other problems like ankle surgey 4 on right and 3 on left, stops me from to much excersise. Being that I can not do some of the things I used to it bothers me alot. I was so active and now NOT.

allentimtim profile image
allentimtim

It just seems likethe news off another path of illness comes my way, enough is a enough

JohnPepper profile image
JohnPepper

Yes this is a very scary symptom. I have never completely overcome it but I have more or less stopped having falls. I learned a long time ago how to fall without hurting myself and I would suggest that you do this as well.

I have found that the fitter I am the less I fall. I have also found that if I concentrate on what I am doing the less I fall.

Look at my profile on this website and draw your own conclusions.

HeartSong profile image
HeartSong

My dizziness seems to be seasonal. In the winter and spring there is no dizziness. But the second half of summer brings with it a lot of environmental mold in my area (I live where it is very humid in the summer). That's when my dizziness starts, plus some strange motor-like sounds in my right ear. Around the end of August when the weed pollens get going and the mold is still high, I'm miserable. My whole body shakes at times. I think the mold, pollens, and pollution all interfere with my body's ability to use the carbidopa-levodopa. I find myself looking forward to winter and a couple of hard freezes

Are you a Christian? If so, here's a phrase from the Bible that I've been using lately to feel stronger: ". . .let him take hold of My strength, that he may make peace with Me. . ." ( Isaiah 27:5).

kievian profile image
kievian

IF you have PD there is no reason to be afraid. Don't be lured into fighting it - think of it as an unwelcome guest that you can''t get rid of but must learn to live with.

Falling is a symptom of PD bcause dopamine is involved in passing information to the brain about your stability and balance. If dopamine is in short supply then you will feel dizzy nd unstable and be liable to fall.

Do you have a tremor? Do you find yourself feeling slow and stiff? These are both very common symptoms of PD, caused by shortage of dopamine. Were you prescribed Sinemet or Madopar? Both of these contain L-DOPA, which your body can usually convert to dopamine, which alleviates the symptoms that you have experienced. PD rarely kills patients directly but People with PD (PwPD) have an increased risk of pneumonia, falling and cardiovascular issues, which can all be fatal, but which you can be fore-armed against. I have had over 100 falls in 5 years but the risk is declining now because I have had to learn to pay attention and take care.

Your neurologist should have told you this and a lot more besides but maybe (s)he isn't sure enough of the diagnosis yet!

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