Vertigo Symptoms - Any advice?

[BinaryAudio]

Hi there,

my brother crashed with M.E back in 1996, after a viral infection (glandular fever). He was bed ridden with it for 6 years, and in a very bad way indeed.

Around 2002, he made a partial recovery, and has gone on to lead a somewhat normal life, apart from a particular problem that still plagues him, even now.

When he goes to bed, as soon as he lays down and closes his eyes, he suffers from vertigo like symptoms. He describes it as feeling like the bed is "strapped to a roller coaster", and he experiences quite violent feelings of fast "flying" sensations, which, as you can imagine, are very difficult to cope with. If he opens his eyes, it stops.

He suffered with this issue all the way through his worst years with M.E, but we found that the problem could be helped if someone gently brushed his forehead with a feather duster, of gently moved the mattress of the bed up and down. my father would spend hours every night doing this for him until he could finally get to sleep.

Without some form of sensory input, the flying sensations are bad, but as soon as the brain receives some form of sensory input, the symptoms cease. he describes it as "grounding" oneself.

In the last 10 years or so, he has seen numerous vertigo specialists, but nobody can get to the bottom of this problem, so he has been forced to live with it for over 20 years. I think it's because this is not classic vertigo, so they are somewhat baffled by it.

He does not suffer these symptoms when his eyes are open, only when the close. It’s as if the brain, when denied actual input, starts manufacturing it’s own, causing some very unpleasant sensations indeed.

He has lived with this for almost 30 years. But recently, it has began to get worse, which is something he has greatly feared. It is for this reason that I am writing this, in the hope that someone out there might have experienced something similar, and can maybe help him.

Thanks for your time,

Chris.

 

[brenda]

Hi @BinaryAudio (Chris)

I had been having vertigo since my health crashed about a year ago, which I believe now was due to a return of Lyme Disease which I thought I had gotten rid of with herbs and rife therapy.

I have read that it is definitely connected to late stage Lyme.

As part of my treatment I began to use rife frequencies again and tighten up my diet and the vertigo has gone never to return I hope. It was pretty scary at the time.

 

[bad1080]

there are these exercises to "recalibrate the inner ear" (that's how i would describe them, may not be accurate), like the Brandt-Daroff Exercise or the Semont Manoeuvre

 

[BinaryAudio]

Hi Brenda and bad1080,

many thanks for you replies, it is most appreciated.

I must admit that i have not heard of rife therapy before, but i am looking into that now. Could you maybe give some more details? What do you use for this therapy? A "rife machine"?

bad1080, yes, I myself have had some experience of dealing with classic vertigo, which I cured myself by using the "Epley maneuver", which I assume is something similar to your suggested techniques. One go at the Epley maneuver cured my problems. I wish i could say that same for my brother.

Unfortunately, these kinds of therapies have no effect on my brother's "vertigo", probably because I don't think it's actually vertigo.
What I mean by that is that his problems don't seem to be related to the inner ear. His symptoms are vertigo like, but it seems to be something else which is causing the flying sensations.

He has seen numerous vertigo specialists in London, but none of them could help sadly.

Again, thanks for your replies. it's always helpful!

Maybe my thread title was misleading, but I'm not sure how else to describe it. It is a very odd and specific problem, which has (up until now) doctors and vertigo specialists mystified.

 

[brenda]

@BinaryAudio

I must admit that i have not heard of rife therapy before, but i am looking into that now. Could you maybe give some more details? What do you use for this therapy? A "rife machine"?

Correct. Here is one forum which will answer any questions:

https://www.rifeforum.com/forum/search.php?searchid=67204

You must register first.

Some rife machines are very expensive but here are ways to get them cheaper such as making them yourself. Rife therapy is used by MD's in Germany.

 

[brenda]

https://www.rifemachinebuilder.com/products/

 

[brenda]

https://lymeherbs.eu/139-products

 

[BinaryAudio]

@brenda

Many thanks for the info, I'll look into that!

 

[WinterWren]

Needing visual input to ground yourself can be an issue in MS, has your brother had a head and spine MRI? Not that it would likely be MS just maybe something related. One MS person I know can walk fine as long as her eyes are open and the view of her feet isn’t completely obstructed (she can’t walk through tall grass for example).
Central vertigo (from the brain not the ears) can be caused by MS and other things, I think a neurologist would be the specialist to see.

 

[BinaryAudio]

Hi @WinterWren

thanks for your reply.

My brother has seen neurologists on more than one occasion, and he has had an MRI scan. Unfortunately, they could not find anything that they could attribute these syptoms to.

I think he feels that the problem has more in relation to his eyes than classic vertigo. Sometimes he says when he is standing up with his eyes open, he can detect slight movements in his peripheral vision.

When his M.E was very bad, he had "blepharo spasm", which is an uncontrollable flickering of the eyelids. I think he suspects the flying sensations are somehow linked to that, even though he no longer suffers with it.

 

[bad1080]

did he start any new medications? the peripheral vision stuff reminded me when an antidepressant gave me paranoia and i'd see shadows in the corner of my eyes.

 

[BinaryAudio]

Yes, sadly last year he was diagnosed with Lupus, which meant he had to start taking a drug called Hydroxychloroquine to protect him from potential organ damage.

He started taking it almost a year ago, and up until the beginning of this year, he had gotten on OK with it, as it hadn't had a negative effect on the flying sensations, which is so often the case for him.

He has taken lots of different medications over the years, and almost ALL of them, after some amount of time, cause a worsening in the flying.

I will refer to his problem as "flying" from now on, as vertigo is not really an accurate description. My brothers feeling of movement is fast, in straight lines, not dizzyness. It is like flying, quickly. It is a very unpleasant feeling, especially if you are trying to get to sleep, which is when it always appears.

So, it was unusual that he managed to take the Hydroxychloroquine and for it not to exacerbate the flying. Unfortunately, over the last few months, the flying has become worse, which my brother attributes to the Lupus medication.

But, to be clear, the Hydroxychloroquine has not caused the flying. He has lived with that for almost 30 years. The flying is a direct result of his M.E.

One of the only anti depressants he has been able to take is Amitriptyline (30mg). Almost any other drug he tries, will at some point, cause a worsening in the flying symptoms. He seems very sensitive to almost all types of drugs.

It is a cruel irony that these random drugs only ever seem to agrovate the problem, rather than stumbling across something that calms or eliminates it.

 

[brenda]

@BinaryAudio

Mine started when I lay down or turned onto my other side and felt like the room was spinning with fast movement as you said. It only lasted a short while.

Lyme Disease is called the great imitator as it has symptoms in common with many illnesses and is often misdiagnosed. Testing is tricky as false negatives have been found often. A lot of lyme Literate MD's now use clinical diagnoses.

Antibiotics are no good at late stage. Some say now that it is just about impossible to get rid of at late stage so you have to stay on the diet and anti-microbials.

 

[linusbert]

is the vertigo i dependent, so if you look with the eyes in certain directions, does it get worse or better? i had a episode where when i was looking to the top right it appeared but not on the other side. in my case i think it was due to some kind of bad posture and neck muscle and nerve compression or so.

i do not know the specifics of your brothers disease, but vitamin D in high doses is used to treat some auto immune conditions and MS. see the coimbra protocol which should be done with medical assistance.

also a thiamin derivate like benfothiamine or lipothiamine might help, as its directly related to those nervous system issues.

maybe acetyl carnitine might be of help, it increases energy in the brain (and probably rest of the body too).

1. Glycine might be worth investigating because it acts on receptors and is involved in sleep mechanisms.
2. Glycine often acts in tandem with acetylcholine, as they have opposing functions.
and with that also thiamin is involved again.

the best to your brother

 

[BinaryAudio]

Hello @linusbert

thanks for your reply and your kind words.

I have asked my brother if the direction his eyes are looking has any impact, so I'll reply again when he gets back to me on that.

As far as i know, it isn't a factor, but I will get clarification on that. This only happens when his eyes are closed and he is in the lying down position, basically when he's trying to get to sleep.

Thanks for your info on vitamin D and the rest of your suggestions. I will see what he says about your suggestions, as I know he is monitoring this thread.

@brenda I must admit that Lyme Disease does seem to share a lot of similar symptoms to M.E. It is not something i know very much about, so your information is useful and appreciated.

Thanks for taking the time to respond. This problem is a tough one, becasue so few people seem to have any similar experince, and the various specialists and doctors that have treated my brother don't seem to be able to solve this one.

It seems like some kind of nervous system damage, caused by the M.E, some kind of brain/inner ear/optic nerve issues that were bought about by his illness. It's a very difficult thing to live with because so many of the drugs that should help him actually make the flying worse, so it really does rule his life.

 

[brenda]

@brenda I must admit that Lyme Disease does seem to share a lot of similar symptoms to M.E. It is not something i know very much about, so your information is useful and appreciated.

Thanks for taking the time to respond. This problem is a tough one, becasue so few people seem to have any similar experince, and the various specialists and doctors that have treated my brother don't seem to be able to solve this one.

It seems like some kind of nervous system damage, caused by the M.E, some kind of brain/inner ear/optic nerve issues that were bought about by his illness. It's a very difficult thing to live with because so many of the drugs that should help him actually make the flying worse, so it really does rule his life.

There are a few things that distinguish Lyme from ME.

Bells's Palsy around the time of original contraction. Rash often not seen.

Worsening of symptoms around the time of full moon (activation of reproduction of bacteria).

Herx reaction to anti-microbials.

Gradual increase of illness.

Transient joint involvement.

More severe brain decline in Lyme.

I had ME for most of my life before contracting Lyme at about 50.