cgstar4
Senior Member
- Messages
- 100
i have it constant 2 &feel the same way not many out there with it constantly
tired of it
tired of it
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.
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!
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!)
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!
same! nonstop despite trying many things.i have it constant 2 &feel the same way not many out there with it constantly
tired of it
I am so sorry—it is very hard. What do you do to get out?same! nonstop despite trying many things.
I am bedridden.I am so sorry—it is very hard. What do you do to get out?
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). ]
years of bad hypotension
I was under the impression that LDN was best for ME/CFS at 2.5mg.
it bled alarmingly, and for a very long time.
I also take liquid Vit D3, which I’ve managed to edge up considerably from my starting dose. I’m at 9000 mcgs now.
they are definitely better for noise reduction and comfort.
I have had bouts of severe vertigo episodes with this, they feel like seizures
I have had bouts of severe vertigo episodes with this, they feel like seizures
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.
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.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 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.Magnesium is also a cofactor to avoid potential kidney stones.
thank you, I am an aromatherapist and frankincense is amazing but unfortunately due to mast cell stuff I have had to stop using them past year and a half.Frankincense might be helpful: The last paragraph of the excerpt below mentions seizurelike activity.
@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.
Why would cayenne be helpful for OI?
my grandmother told me it was good for the blood
great wisdom in the old remedies and probably every culture has some.
I think Honey is a real gift and when I take a little before sleep, I seem to sleep longer.