80 y.o. husband diagnosed with PD a little over one year ago (Nov.27 '23) not started on Sinemat until March 24 '24 which he is still on. Aside from several non-motor symptoms + mild hand tremors, the issue is dizziness which started as mild lightheadedness about 4-5 years ago, gradually developed into dizziness which has been getting worse and as quality of life disrupter it's at 6 sometimes 7 out of 10. Researching for / exploring symptom management approaches focused on dizziness ----- among a number of interesting promising also impressive from results demonstrated by PD patients, the 2 I'm currently focusing on are photobiomodualtiom ( PBM ) specifically SYMBYX and Vagus Nerve Stimulation (VNS) specifically Vagustim ----- have ordered and awaiting delivery of the Vagustim device which is based on stimulation via both ears of the vagus nerve / dysfunction of the autonomic nervous system. Desperate to find relief ( to be realistic, not cure) to help husband. Re. the dizziness -- orthostatic hypotension (OH) and any ear problem have been ruled out as causes.
suffering from dizziness : 80 y.o. husband... - Cure Parkinson's
suffering from dizziness
Okay, so he has been thoroughly looked at by more than one doctor, who have ruled out orthostatic hypotension (OH), any other blood pressure problem, and any ear problem, meaning any vestibular problem.
What is left is Parkinson's central vertigo. I personally suffered from this. Fortunately I did recover with the passage of time. I found that meclizine helped a little bit and that Scopolamine patches were highly effective.
I took a look at the literature. This paper was of interest but unfortunately the title promised more than it actually delivered: The Causes of Dizziness in Parkinson’s Disease researchgate.net/publicatio...
They did not actually find causes - they found associations, namely with feelings of fullness in the ear, tinnitus, and intervertebral disc problems in the neck. 80% of the patients were taking dopamine agonists, which seems higher than the typical cross-section of Parkinson's patients, Is your husband taking a dopamine agonist, and if so did the onset of dizziness bear any relation to commencing dopamine agonist treatment?
Hi, I suffered with Orthostatic Hypotension for years and it was debilitating. I finally through a Zoom call and a suggestion from another sufferer, asked my doctor to prescribe me Fludrocortisone. I have had unbelievably amazing relief for a half a 50mg tablet a day. If you look up this medication it says it is the first line of defence from OH but not one doctor ever mentioned this when I told them I was lightheaded, fainting and dizzy a lot.
Good luck
You might see if he can in any way easily aggravate the problem. I know that sounds silly , what I mean is if he was to look up or down or stand on a short stool or get up from a sitting position or close his eyes during standing and if you find something take that to a doctor.
Also Dizzy may be the wrong word because I have found it means different things to some doctors than some of us and it really does not clearly describe what is felt , loss of balance, unable to find vertical, headaches , double vision , confusion , motion sickness . black out, faint, loss of strength.
I noticed that nobody is talking about metabolic health. I had a friend who was experiencing vertigo and at my insistence, she finally took supplemental magnesium threonate and vitamin D3 along with fish oil ( omega-3s). The other day she said , you know, I should have listened to you earlier. I have more energy and my vertigo is gone. And she has no side effects, as is typical in drug protocol. Certainly worth a try.
Out of curiosity, why did you choose the Vagustim? I have been researching VNS devices and can’t make a decision on which one to use. Any insights you have be helpful thank you!
I came by the Vagustim device by accident, while I was reading as much material as I could find about the vagus nerve and dysautonomia. I bought the Vagustim only after much hemming & hawing - like a shot in the dark b.c. I didn't firmly know what I was doing but I was desperate to find something that might help to get rid of the ongoing dizziness my 79 y.o. husband diagnosed with Parkinson's was suffering from / FYI my husband does not have orthostatic hypotension. I was impressed by what I was reading about auricular VNS which I equated with the Vagustim not knowing at the time there were other VNS devices on the market as only Vagustim and nothing else showed up at the time.
After I purchased the Vagustim in early February, accidentally I came upon other VNS devices on the market. I don't regret buying the Vagustim b.c. at least it doesn't sound like it's inferior to the competitors in addition to which as Vagustim states, it uses 2 leads or electrodes not just one like the others, which sounds like an advantage or at least I would like to believe that to be the case.
When I bought the Vagustim I was surprised to see the Fedex package indicated it was from Istanbul whereas I believed it was made & distributed in the U.S. I called the number in the U.S. maybe there was a mistake and they explained that the company is Turkey-based with operations in Istanbul, that devices are manufactured in Turkey and distributed internationally, shipped to customers worldwide including the U.S. Several days ago while "googling', I chanced upon this statement, good to hear although I don't know where it originates from : What is the best country to live in if you have Parkinson's disease? A - Turkey. Turkey is the best country in the world for the treatment of Parkinson's disease. In Turkey, both drug treatments and brain stimulation options are widely used in the treatment of Parkinson's disease. Today, Turkiye has high success rates in the treatment of Parkinson's disease.
Also, announcements that Harvard will be using the Vagustim for research purposes.
( I have not started the Vagustim on my husband yet b.c. you need to "download the Vagustim mobile app onto a smart device" which my grand-nephew tried todo but couldn't b.c. apparently my cell-phone is too ancient so now I am off to purchase a new cell-phone. I hope the Vagustim / auricular VNS will relieve my husband from the dizziness, at the same time hoping that at least it will not make the dizziness worse.)
( from Vagustim :
vagustim.io/blogs/news/vagu...
an excerpt : "Autonomic dysfunction diseases, characterized by an imbalance in the autonomic nervous system, can greatly impact a person’s quality of life. These conditions, including dysautonomia, postural orthostatic tachycardia syndrome (POTS), and neurocardiogenic syncope, often present with a range of symptoms such as dizziness, rapid heart rate, and low blood pressure. Traditional treatment options have shown limited effectiveness, leaving patients seeking alternative solutions." )
wow thank you so much for such a thorough response! Sounds like you hit uponthe device you were looking for even if you didn’t mean to do it! I have pulled the trigger on the TRUVAGA device because I wanted to apply the stimulation directly to the vagus nerve on my neck. It just shipped today so hoping to get it soon and see what kind of results it has. It is the sister device of the only VNS device approved in the US by the FDA. Not exactly the same device but very similar so I am hopeful! Please post again once your husband starts using his device. I’d love to hear the results. God bless!
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