vertigo

Sing

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I was under the impression that LDN was best for ME/CFS at 2.5mg. I have not been able to get to try LDN but many on this board have and I bet someone will chime in.

Moving would cause me to have PEM and all my sensitivities would peak. I do get vertigo, I think mine is blood pressure. Do you have POTS?

Have you been to an ENT Dr to see if it is Meniere's disease? One of my close friends has that and is being treated and learning to cope with it. I have horrible sound sensitivity and have a thread that I will link HERE hope that helps.
Thank you @jesse's mom for your sympathetic and helpful response. I do have orthostatic hypotension, but not POTS. As bad as my low blood pressure can be when upright, I have never had vertigo or nausea before. But I do suffer from an excess of noise in the city environment where I’ve lived the past 4 months—preceding its onset. Street noise here is particularly difficult for me given that I have noise sensitivity and a low ability to handle stimulation of all kinds.

One of the early indicators 20 years ago, when I first entered the ME/CFS “picture”, was the loss of my normal “fight or flight” response—my system would go down fast to “empty” followed by PEM. As with most of us, I didn’t know what was going on and doctors weren’t helpful. I have done a lot to help myself, reducing a lot of activity and stimulation, and slowly building a repertoire of helpful medications, to try to keep myself up to a level of “low normal” as much as possible, but the nature of this beast, ME/CFS, didn’t go away.

Here is what I am doing so far, to chip away at this symptom of vertigo and nausea:

I did look up the high quality ear plugs you offered a link to, got them, and find they are definitely better for noise reduction and comfort. I can use them on the street or anywhere and still able to hear conversation and what I need to, without the blast and intensity of this city environment. Turning down the volume, they do improve my stamina.

I have stopped suspecting the LDN or other current medications I’m on, as they are prescribed and watched over by my new doctor, finally a specialist in ME/CFS!

It seems to me more likely caused by an increase of arthritis and ongoing tendency to compression in my upper spine.I do have increasing arthritis all over and a past injury to my neck dating back almost 40 years. It was an injury that pulled the vertebrae out of alignment and stayed stuck there for 8 years afterwards. In retrospect I probably needed neck surgery early on, because all the stretching, swimming, ibuprofen, chiropractic, massage, never fixed the problem.The muscles and fascia in my neck area jumped and knotted the displacement so fast and hard, it would not be corrected by normal means. I had a hard lump the size of a golf ball over the side of my neck, which always ached. Ironically it was another accident 8 years later which shocked the area and apparently “knocked it open”, which provided the opportunity for recovery. (Lacking surgery, try another accident!) After this I could sit down comfortably again for longer than a half hour, and muscle release did the rest. But arthritis started creeping in, as it has in a lot ofjoints, and the pattern I have of myofascial constriction increases compression.

The best way I have learned to help myself is to do a lot of stretching as well as focussed work on the tightest areas with a wooden roller. I lie on it and move it slowly from one spot to the next until I get some release. This helps a lot to open up my body’s circulation and flow, and allows bones and the rest to move back into better position and function. This sort of muscle/fascia problem of abnormal contraction, constriction and consequent aching, seems to be usually classified as part of FM, or maybe more accurately, Myofascial Pain Syndrome, but some with ME/CFS have it too. Anyway, combined with arthritis and any injury, it is a nuisance!

Since starting the vertigo, I have concentrated even more on using the wooden roller and stretching, to relieve whatever I can that is restricting the normal flow of nerve transmission between brain and body.This has to involve distant muscles and fascia too, given how things are interlinked, so is a pretty thorough job each day. I have also improved my body position at night and am trying a firmer bed, to take the strain off. And when I walk, I lift my neck into better alignment. I think of the carriage of those lovely women who carry and balance water jugs on my head. All this is helping and I am doing better in avoiding or minimizing the vertigo-nausea, but haven’t been fully banish it yet. Some days I am free of it and other days it is there but not as severely as when it first came on. I think I am giving myself a little more leeway, but that there is still an underlying problem. My doctor’s first take is that I should get an MRI, and I agree.

I am very motivated to find the physical cause of this vertigo and a more effective solution, as it is the most dangerous symptom I have experienced.
 
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I did look up the high quality ear plugs you offered a link to, got them, and find they are definitely better for noise reduction and comfort. I can use them on the street or anywhere and still able to hear conversation and what I need to, without the blast and intensity of this city environment. Turning down the volume, they do improve my stamina.
I am glad they are working for you, they helped make my world a little bigger again.

I have stopped suspecting the LDN or other current medications I’m on, as they are prescribed and watched over by my new doctor, finally a specialist in ME/CFS!
I am so grateful there are more ME/CFS specialists these days and you have one. I am glad for all of us that there is a growing awareness of our illness and that we are less often marginalized by the medical community! I see a real change in the last two years.

Ironically it was another accident 8 years later which shocked the area and apparently “knocked it open”, which provided the opportunity for recovery. (Lacking surgery, try another accident!)
Isn't weird how life will do that sometimes?

This sort of muscle/fascia problem of abnormal contraction, constriction and consequent aching, seems to be usually classified as part of FM, or maybe more accurately, Myofascial Pain Syndrome, but some with ME/CFS have it too. Anyway, combined with arthritis and any injury, it is a nuisance!
Have you ever had a massage technique called 'rolfing' it works with the fascia to free it. That worked for me a time or two, hard to find a massage therapist who knows the technique.

I am really glad you are finding some answers @Sing

All the best:tulip:
 

Forbin

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Does it feel like you are spinning, or is it more like you are bobbing back and forth?

Are your eyes having trouble converging - or remaining converged - on the same spot? In other words, do you have double vision (which can be fairly subtle as opposed to seeing two distinct images side-by-side).

Does one or the other eye tend to turn outward (or inward) if you are not concentrating?

I mention all these things because I had pretty severe "dizziness" (a sensation of constant motion, but not necessarily the spinning of "vertigo") for about four years, starting at the onset of ME/CFS. My dizziness had the features I mentioned above.

If possible, I would see an otologist, to rule out known causes of such dizziness/vertigo. There are some otologic centers that can perform the specialized tests needed to rule out possibilities, or make a diagnosis. They can also objectively measure your degree of balance impairment. The one I am familiar with is the highly respected "House Clinic" in Los Angeles https://www.houseclinic.com/. If they are not near you, you might still call to see if they know of an otologic center somewhere close to where you are.

There is also a condition known as Mal de debarquement syndrome (MdDS), which is usually felt after "disembarking" from a "motion event," like a boat ride or train travel. It produces a sense of continuing motion. In most people, this resolves fairly quickly, but there is a condition known as "Persistent MdDS."

According to this article from Mount Sinai Hospital in New York, there is now a potential treatment for persistent MdDS:

https://www.mountsinai.org/about/ne...isorder-the-mal-de-debarquement-syndrome-mdds

This treatment is relatively new, though. I have no personal experience with it.


[ FWIW, my dizziness improved considerably over a period of months in the fourth year after onset, but it did not completely resolve. Instead the rate of improvement dropped off fairly rapidly. Though I continued to improve, it was at an ever slower rate. So, after experiencing maybe 50% improvement in the 4th year, it was several more years before the dizziness "resolved" (or was at least minor enough to be ignorable). ]
 
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sunshine44

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Does it feel like you are spinning, or is it more like you are bobbing back and forth?

Are your eyes having trouble converging - or remaining converged - on the same spot? In other words, do you have double vision (which can be fairly subtle as opposed to seeing two distinct images side-by-side).

Does one or the other eye tend to turn outward (or inward) if you are not concentrating?

I mention all these things because I had pretty severe "dizziness" (a sensation of constant motion, but not necessarily the spinning of "vertigo") for about four years, starting at the onset of ME/CFS. My dizziness had the features I mentioned above.

If possible, I would see an otologist, to rule out known causes of such dizziness/vertigo. There are some otologic centers that can perform the specialized tests needed to rule out possibilities, or make a diagnosis. They can also objectively measure your degree of balance impairment. The one I am familiar with is the highly respected "House Clinic" in Los Angeles https://www.houseclinic.com/. If they are not near you, you might still call to see if they know of an otologic center somewhere close to where you are.

There is also a condition known as Mal de debarquement syndrome (MdDS), which is usually felt after "disembarking" from a "motion event," like a boat ride or train travel. It produces a sense of continuing motion. In most people, this resolves fairly quickly, but there is a condition known as "Persistent MdDS."

According to this article from Mount Sinai Hospital in New York, there is now a potential treatment for persistent MdDS:

https://www.mountsinai.org/about/ne...isorder-the-mal-de-debarquement-syndrome-mdds

This treatment is relatively new, though. I have no personal experience with it.


[ FWIW, my dizziness improved considerably over a period of months in the fourth year after onset, but it did not completely resolve. Instead the rate of improvement dropped off fairly rapidly. Though I continued to improve, it was at an ever slower rate. So, after experiencing maybe 50% improvement in the 4th year, it was several more years before the dizziness "resolved" (or was at least minor enough to be ignorable). ]

I constantly feel hard to describe situations like I am on a wave and bobbing and things do not look right often. I have had bouts of severe vertigo episodes with this, they feel like seizures....horrible. It really gets me down because I hope to God my brain can heal itself after 2 years of this. It does shortly improve when I have a severe crash and my heart is like 200 beats per minute but that's a whole nother beast. So this gives me hope that maybe its not permanent brain damage....

A LLMD told me I had convergence insufficiency in my eyes, sent me to specialist and did all the glasses etc. and although they kind of helped my eye not turn inward.....nada for vertigo.

Thanks for the info. Between POTS and that and cognitive issues, I currently am in no shape to sit up for long enough to go to Drs anymore for now. Went to alooooot in past 3 years....didn't really get anywhere.

I hope to God this just disappears one day....it is so GOD awful.
 

PatJ

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years of bad hypotension
I've recently been able to improve my hypotension by taking cayenne three times per day. My balance is better, I can stay upright for longer before OI symptoms start and have more energy. I started by taking 1/8 tsp and now I'm taking 1/2 tsp 3x/day. It's easier to endure by taking it with 4oz of slightly cold water (not too cold since that's a shock to the body and requires energy to warm it up in the gut), then following with more water.

I was under the impression that LDN was best for ME/CFS at 2.5mg.
2.5mg is the magic amount for me where I see benefits without drawbacks.

it bled alarmingly, and for a very long time.
Dumping cayenne into a cut can help it to stop bleeding. I've tried it and was surprised to see how well it works. It also didn't hurt, at all. Cayenne also helps reduce scarring. I have only a faint line on the finger that I cut.

I also take liquid Vit D3, which I’ve managed to edge up considerably from my starting dose. I’m at 9000 mcgs now.
Magnesium is also a cofactor to avoid potential kidney stones.

they are definitely better for noise reduction and comfort.
Have you tried noise blocking earmuffs overtop of the earplugs? Before I became housebound I would use that method to endure the noise in stores that played music, as long as it wasn't too loud.

I have had bouts of severe vertigo episodes with this, they feel like seizures
This site contains some information on treating vertigo (further down the page.) One product mentioned on that page, Dr. Christopher's Relax-eze is also great for relaxation, reducing the tired-but-wired feeling, and for sleep. It's available on Vitacost. Swanson and iHerb also carry some Dr. Christopher's products.
 

PatJ

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I have had bouts of severe vertigo episodes with this, they feel like seizures
Frankincense might be helpful: The last paragraph of the excerpt below mentions seizurelike activity.

from 'Lyme Brain': Causes and Solutions by Nicola McFadzean Ducharme, ND:
I have been utilizing essential oils more and more with my patients, and seeing great results. Essential oils, being lipid-soluble, can cross the blood–brain barrier easily and have good penetration into cells overall.

There are a number of constituents that make particular oils good for neurological symptoms. Some of the key ones are sesquiterpenes, because of how easily they cross the blood–brain barrier. These help to oxygenate the tissues, reduce inflammation, and calm the nervous system. They can support the endocrine system and have analgesic effects. Some oils that are high in sesquiterpenes are cedarwood, frankincense, patchouli, vetiver, ginger, ylang-ylang, myrrh, Helichrysum, Melissa, and black pepper.

Frankincense in my view is the very best essential oil for Lyme brain. So long as the highest-quality oils are used, frankincense can safely be taken internally. I have patients either put it directly under the tongue, or swallow it as a capsule or in some cases on the roof of the mouth (preferably toward the back of the mouth at the soft palate). Frankincense can also be put on the soles of the feet; the soles are a good entry point for essential oils, as the skin is quite thin, and yet the pores are the largest there of anywhere on the body, so systemic absorption is rapid and effective. Yet others apply it on the temples or the base of the skull.

Patients love frankincense – it helps with brain fog, focus/concentration, and emotional balance. I have a handful of patients who have seizurelike activity that is now controlled with daily use of frankincense. I have many more who report that their brains are so much clearer since using frankincense.
 
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@PatJ
Dumping cayenne into a cut can help it to stop bleeding. I've tried it and was surprised to see how well it works. It also didn't hurt, at all. Cayenne also helps reduce scarring. I have only a faint line on the finger that I cut.
I tried that when I cut myself, it helped slightly, but I think the problem was a serious lack of K1 ..... it's a great tip though, for anyone reading that post. I've used it often in the past with excellent results, and thanks for the reminder.

I take truckloads of mag glycinate for other issues, as well, so I think I'm OK. Again, terrific input for anyone on the fence about adding in more, or any, magnesium.

And as an aside, magnesium glycinate is the least likely to produce the dread bowel effect when taking higher doses. Solgar makes a great one, at least for my purposes, in 100 mg tablet form (I cut it in half and take 50 mg every hour or so), Chelated Magnesium (chelated to glycine).

This was a wonderfully informative post, @PatJ, thank you so much for it !!!
 
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I'll try to keep this short and I hope I make sense (bad day) but thought I should note my experience. I had over a year of the vertigo feelings, constant bobbing like in a boat, feeling like I was moving forward after the car stopped, etc... only had a few full vertigo episodes (drop to the ground ones). It sucked, I really sympathize.

It eventually just went away, completely, but now years later its back to a lesser degree. I had been tested for other vertigo causes like benign positional vertigo (BPPV), meniere's disease, nothing was applying to me.

Things that seemed to help a little in the first year were treating tmj disorder (night appliance), anything to relax neck, anything anti-inflammatory. They didn't help that much though, or that quickly at least. There was also constant pressure in/behind my ears and that's back now, but using CBD oil is helping combat it. It seems CBD oil is at the same time taking away some of the vertigo feeling and dizzy feeling. It's great. Have only been using a couple weeks.

Who knows what's causing all this inflammation (maybe it's something like what @Sing is talking about which happens in FM). However, I do like to follow theories about intracranial hypertension and recently came across this vertigo cause called Perilymph Fistula which involves all of these symptoms I've had, the idea seems to be that cerebral spinal fluid gets into your inner ears. More to it here https://vestibular.org/perilymph-fistula

I also have OI and don't know how that plays into things but maybe seeing if my stomach can handle some cayenne would be a good little experiment to try :)
 

Sing

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@PatJ and @YippeeKi YOW !! Why would cayenne be helpful for OI?
I like it on my food and use it to improve taste. I think that perhaps the SFN—actually neuropathy of other nerve endings too—has decreased my sense of taste and that is why I came to like a hit of cayenne, and I have heard it might be useful in calming down some forms of pain, but I don’t know why, or also why it might help for OI.
 

Sing

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@Sing I love it in my food too. I will wait to hear from @YippeeKi YOW !! and @PatJ but I know that it is an anti inflammatory and that my grandmother told me it was good for the blood.
Did you have a grandmother from a certain area of the world where they use cayenne a lot, or did she have some other specialized knowledge? I learned a few very useful remedies from my mother who’d learned them from her mother, too.
 
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@Sing

WE are from Louisiana. We are not Cajun though, we are Creole. A Creole is a community where the members are from France and are not from the bottom of the boot. That means if you see the state of Louisiana as a boot; we are from where the laces would be, just north of New Orleans.

The main difference in the cuizene is that the Cajun cooking uses bell pepper in the base of most recipes and the Creole is onion, celery, and garlic.

I do believe that there is great wisdom in the old remedies and probably every culture has some.

I think the bone broth chicken soup really has something to it for viral colds, I think Honey is a real gift and when I take a little before sleep, I seem to sleep longer.
 

PatJ

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Why would cayenne be helpful for OI?
Cayenne lowers high blood pressure and increases low blood pressure. But you need the right dose. I'm taking 1/2 teaspoon 3 times per day. I didn't notice much at 1/8 tsp, but did see improvement at 1/4 tsp, and even better at 1/2 tsp. Some sources recommend 1 teaspoon 3 times per day.

Curiously for me, I'm able to stay upright longer even though my blood pressure reading from an arm cuff is often the same as it was without the cayenne (sometimes it's even lower). I've read that there can be a difference between core BP and peripheral BP so maybe the overall increase in BP isn't registering on the cuff but is enough to allow me to stay upright longer.

The difference for me has been significant. I used to max out at 45 minutes upright (or if I really pushed it, 1 hour) because my OI symptoms would force me to lie down. I can now stay up for an hour and have even had periods of 90 minutes upright, although that's pushing it again.

Overall my balance is better as well. I can move more quickly without feeling off balance. I also have more energy.

Something else to consider is Schizandra, which is supposed to help increase blood pressure but I haven't tried it yet.

my grandmother told me it was good for the blood
It's good for the heart and entire circulatory system as well.

great wisdom in the old remedies and probably every culture has some.
You might like Herbal Legacy. They have lots of information about herbal remedies. A search for cayenne will provide a lot of info. And Earth Clinic is great for user suggested remedies, many passed down through the generations.

I think Honey is a real gift and when I take a little before sleep, I seem to sleep longer.
Many people take honey at bedtime because it helps to keep their blood sugar up during the night. It might be doing that for you, allowing you to sleep longer.