Vertigo: As I fight to keep working with... - Cure Parkinson's

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Vertigo

Stevenmast profile image
24 Replies

As I fight to keep working with Parkinson's who would have thought that vertigo or whatever you want to call it may possibly do me in. Before I made the switch 3 months ago from CL to mucuna I had experienced a couple of bouts of vertigo the first one resulted in an ambulance ride in the middle of a meeting! After making the switch I blamed the vertigo on the CL and off I went. Well, the joke's on me because it's back with a vengeance! Two ENT visits 1 neurology visit and my new functional MD all seem to be Clueless. Now I'm getting dizziness if not full-blown vertigo almost everyday. Does anybody out there have a similar problem and perhaps a remedy? Please tell me it's going to go away at least for a little while.

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Stevenmast profile image
Stevenmast
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24 Replies
parkie13 profile image
parkie13

en.m.wikipedia.org/wiki/Epl...

It could be just plain vertigo. I have had it before, my husband has said it quite a few times. Up above is a link to a site explaining what you can do for it. He has used the maneuver with success.

Stevenmast profile image
Stevenmast in reply toparkie13

I will take a look thank you

parkie13 profile image
parkie13 in reply toStevenmast

You can also go on YouTube and see how Epley maneuver is done

Kevin51 profile image
Kevin51 in reply toStevenmast

The Epley manoevre is for benign paroxymal positional vertigo. It is easy to tell if you have it - when you quickly look up you immediately feel giddy and nauseous (you lose eye contact with your surroundings and suddenly discover your lack of balance info). I had it before my PD kicked in and it was gone forever after epley. My neuro knew what it was but did not do Epley himself; my GP had not heard of it; the locum neuro for my next visit did know what to do and fixed it. I watched the youtube video but my wife was not up for it!

If it is not BPPV then Epley won't help.

good luck

sharron2 profile image
sharron2

You need to rule out orthostatic hypotension. This is a sharp drop in blood pressure. My pwp has this and we have worked hard to minimize this. Talk to your doctor about this. Make sure none of your meds are contributing to this.

My husband can have very intense dizziness and nausea. But reducing some and eliminating a prostrate med that really bothered him, making sure he stays well hydrated, reducing coffee and soft drink consumption and increasing his salt intake (to help retain water) and trying to keep stress at a minimum has improved his life significantly.

Google this to learn more about it and see if it might apply to you. It can happen to pwp.

Stevenmast profile image
Stevenmast in reply tosharron2

Thank you!

vespatone profile image
vespatone in reply tosharron2

My prostate med "tamsulosin hydrochloride" brand name contiflo XL400mg causes me to have terrible vertigo but I was hospitalised twice with vertigo in the past before I had prostate problems. The first time I was sent home with meds which apart from making me tired did nothing but the second time I was shown the Eplay manoeuvre which worked rather well.

I'm just undergoing tests to see if I have PD. I've noticed that when out walking my feet/legs just stick and I can't step forward and also leaf patterns on the ground move about making me feel sick.

I've had type 1 diabetes for 40 yrs now which I've been told increase my chances of getting it. I'm worried sick waiting for results.

Tiger101 profile image
Tiger101

Definitely look into Orthostatic Hypotension. My husband suffers from severe OH. I think things would improve greatly if he could get rid of it!! Take your blood pressure laying down, sitting up and then standing. Do this this twice a day and keep a record of it. This should tell you if your BP drops too fast. My husband already had it before being diagnosed with Parkinson's and I read Parkinson's can give it to you. He takes Rytary which can also cause BP drop. Then, he has to take a BP pill and it drops more. Sigh.

Tiger101 profile image
Tiger101

My husband has also had Vertigo in the past and the Epley Maneuver (google it) really works! And, you can do it yourself.

M-o-ggy profile image
M-o-ggy

Had this for years. Tried the manoeuver and some other exercise. Minimal impact. But D found to be low. Prescribed a course. Now ok. Having another blood test and possibly another course of Vit D

Joynb profile image
Joynb

Dizziness is my main symptom of PD, and the main disabling factor in my life. Every medication tried to deal with it was just about useless and left me with overwhelming nausea, until I gave up trying to treat it.

Joynb profile image
Joynb in reply toJoynb

I now live with the dizziness, trying to ignore it as much as possible.

park_bear profile image
park_bear

BPPV and OH are not the only possible causes of dizzyness/vertigo. If neither of these are the case other possible causes are Ménière's disease, acoustical trauma, neuroma, or adverse effects of medication. Anyone with persistent vertigo of unknown cause owes it to himself or herself to be evaluated by specialist to try to track down the cause.

M-o-ggy profile image
M-o-ggy

I am not saying that Vit D was the cause of my lack of balance but I always look analytically at everything.

Asked for Vit D test because we are likely to be low. When my results came back and I started a course I wondered if there would be an effect on my sore painful joints. ( had probs all my life). When my balance improved I was delighted but did not automatically think there was a connection.

I looked at all parts of my life no recent changes anywhere except the Vit D no change in weather patterns, temperature ,diet etc etc

Have since carried out some research and found that there are some papers out there that have identified a connection

Am cautiously optimistic My Doctor is dumbfounded but is saying I should have another blood test and poss another course of Vit D depending on results So is not ruling it out

Lack of balance is very wearing and tiring , as you all know Still have other PD symptoms although Sinimet helps Poker face, can’t speed up, tottering walk, more difficulty walking when there are people around me., sometimes dribble - annoying things really. Am trying increased exercise which I feel helps

vivalavida profile image
vivalavida

Watch "Top 3 Signs Your Vertigo is BPPV (Benign Paroxysmal Positional Vertigo)" on YouTube

youtu.be/PcINJ7p09-Y

If it is this type of vertigo it is easily treated

vivalavida profile image
vivalavida

"Watch this before attempting the Epley for BPPV dizziness" on YouTube

youtu.be/nHeMSelbug0

cshamb profile image
cshamb

How did u switch to macuna. I take c/l and 3 NOW macuna Is the Mucuna by NOW enough an cut back on c/l. Any info would be appreciated.

Stevenmast profile image
Stevenmast in reply tocshamb

Good morning! Let me start by saying that im only using Mucuna for three months now and im still finding my way with proper dosing . The person that helped me get started has been caring for his wife with PD for roughly 16 years. He told me 3/8th's of a teaspoon was equal to 100mg of Levodopa but start out using less and see how you respond to it. As it turns out he was wrong what it equals is 1.1grams which is 1100mg. but it works for me very well at that dose. I have tried less and it's not nearly as effective. I use the powder extract from nutivitashop.com i am not familar with Now's Mucuna. There are all kinds of mucuna products on the market from capsules to extracts with varying amounts of L-Dopa. I transitioned from CL simple by stopping it and switching to Mucuna at the same time intervals. I have since found a neurologist that works with Mucuna but my appointment is Jan 30th. I would highly suggest you do the same before getting started. I have attached two links not sure when they were written but you will better understand what i am saying after you read it. Good Luck!

Steven

mucunaparkinson.com/parkinson-disease-treatment/dosage-presentatio

also...

online.liebertpub.com/doi/abs/10.1089/acm.2017.0054

JIMOC profile image
JIMOC

get tested for MINERE'S DISEASE

arwenmark profile image
arwenmark

Try Meclizine, I have had bouts of vertigo for years and I now take a 12.5 mg tablet of meclizine every night, helps a lot. Check with your dr. but it should not interfer with the other things you are taking if any.

Stevenmast profile image
Stevenmast in reply toarwenmark

Thank you I have been taking Meclizine but usually it's too late when I do. I should consider what you're saying as a daily regimen because I'm trying to hold down a job. Is your vertigo associated with your PD?

arwenmark profile image
arwenmark in reply toStevenmast

No, not PD, my husband is the one with that. I have a yet undiagnosed neurological illness, as well as diabetes, heart disease, and fibromyalgia.

Not sure which causes the vertigo but been dealing with it for years, think about trying the daily dose of the Meclizine you can order it online, I like the 12.5 mg tablets don't make you sleepy.

aliciamq profile image
aliciamq

There are videos on Youtube with some tricks to try - One of the Dr.s on the TV show "The Doctors" ABC - USA) had it. It took a few trys but corrected my problem🙂

KERRINGTON profile image
KERRINGTON

A non pd relative got hit with debilitating vertigo in his early 30's...spent a lot of time curled on the floor waiting for a shot in the ER.. He and his wife went to ENT's galore all said Meniere's. From my line of work at that time, I had heard of an interesting movement disorder clinic at JFK in Edison NJ. To make a long story short, he met a HOUSE like MD, who said almost immediately, he didn't have Meniere's, but a form of migraine, and put him on zoloft. The MD said if it were to work the relative shd notice relief the first week, now 5 yrs later he's still on mild zoloft, and has his life back.

The MD taught him what signs to look for to stop attacks from starting, and how to use zoloft properly. He's on it for life. If you want I can get the MD's name.

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