Sensory Storms

[Wayne]

I just ran across this item today (below), and thought it described very well some of the "spells" I've experienced over the years. I think it's been a few months since I've had one of these, but I live my life with a general awareness that one of these can come up at any time. Though it's usually some type of over-stimulation that triggers this for me, it can also come about for no apparent reason.

Anyway, I thought I would pass it along. For me, experiencing one of these is always a reminder of how tenuous my hold is to this physical world. These "sensory storms" leave me with a feeling that at any time, something fairly minor could come along and "tip me over" (can't really give say what a good definition of that feeling would be). This realization doesn't necessarily bother me, and can actually be a reminder to appreciate life as it is right now. -- Wayne

Sensory Storms

I've been reading a book written 10 years ago called Chronic Fatigue Syndrome: a Treatment Guide by Erica Verrillo and Lauren M. Gellman. I'm finding it helpful in understanding some of my symptoms.

I found a description which pretty much matches these weird terrifying experiences. It is some sort of seizure like activity. Seizures are often preceded by a feeling that something bad is about to happen. Anyway, here is the description from the book (p. 116):

"Sensory Storms"
Dr. Luis Leon-Sotomayor, the cardiologist who documented the 1965 CFIDS epidemic in Galveston, Texas, described a type of neurological dysfunction that he called a "sensory storm." These storms affect the autonomic nervous system (regulated by the hypothalamus). A person experiencing a storm may first see an aura or sense that something very bad is about to happen. Storms produce sweating, pallor or flushing, elevated blood pressure, slowed respiratory rate, tachycardia, dizziness, and the feeling that one is about to lose consciousness. These autonomic storms are terrifying, but the effects generally pass within an hour. After such an experience a person may feel lingering tiredness or malaise...

People who have warnings of impending seizures or seizure-like episodes, either in the form of a rapidly escalating sense of urgency, surges of strange sensations, intense fear or rage, "spaciness", or any kind of sudden perceptual disturbances can sometimes prevent their full manifestations by immediately withdrawing from all sources of stimulation and entering into a relaxed state through meditation, relaxation exercises, or self hypnosis techniques. This has the effect of changing the brain wave frequency to alpha waves.

 

[kat0465]

wayne,
can you tell me more about DR sotomayor and the cfids epidimic in Galveston in 1965? i was born in 65 In Galveston, and have been sick really since birth.
where can i find info on the story about the epidimic?
thanks

 

[Wayne]

i was born in 65 In Galveston, and have been sick really since birth. here can i find info on the story about the epidimic? thanks

Hi Kat,

I'm sorry to hear you've been sick all your life. I can certainly understand your interest in finding out more about the epidemic which occurred in the year you were born.

I just tried to do a bit of google searching on the Galveston epidemics, but am not really able to find anything at the moment. This table compiled by Byron Hyde lists 63 epidemics worldwide since the 1930s. Galveston is #42.

I think I'll keep searching, and post back here if I find anything. I might suggest checking with a Galveston library; I would suspect they might be able to find some good information for you.

All the best, Wayne

 

[slayadragon]

This sounds to me just like what I experienced with the "whatever" (that I think is a particularly destructive form of poisonous cyanobacteria) that I've found in Lake Tahoe or other places.

Would folks here who have had sensory storms please let me know where they were when they were experiencing them?

The specific town/state/region would be especially helpful.

Other things that were going on (including weather and time of year) would be really helpful too, if you can recall.

Thanks.

Best, Lisa

 

[jenbooks]

Sounds like a seizure, and given that, I would assume it is 1) sympathetic arousal 2) zinc-related? Kindling in epileptic seizures can be dampened, and seizures prevented, with zinc, a finding that has been around for about 25 or more years and 3) glutamate upregulation, so common in these illnesses, thus magnesium, and/or benzos would help.

Hyperbaric oxygen also prevents this.

 

[slayadragon]

That's a really good point about the glutamate upregulation.

If you look at the literature related to the sea otters dying off the coast of California (as a result of domoic acid produced by poisonous cyanobacteria), they experience this same sort of glutamate-associated event. Brain damage occurs as a result, and death if it's bad enough.

Benzos are the usual treatment given to the sea otters. It is not just palliative, but in some cases prevents death and certainly helps to prevent the brain damage.

Best, Lisa

 

[Wayne]

Sounds like a seizure, and given that, I would assume it is 1) sympathetic arousal 2) zinc-related? Kindling in epileptic seizures can be dampened, and seizures prevented, with zinc, a finding that has been around for about 25 or more years and 3) glutamate upregulation, so common in these illnesses, thus magnesium, and/or benzos would help.

Hyperbaric oxygen also prevents this.

Hi Jenbooks,

Thanks much for suggestion about the zinc and the magnesium. I normally supplement with magnesium, but not zinc. I think I'll get some zinc with my next order.

Interestingly, after not experiencing one of these "episodes" for several months, I began to experience one yesterday again. Luckily I was in bed, and it started to come on fairly slowly. For me it feels like "a rug is being pulled out from under me", and I begin to lose my sense of balance. In conjunction with that, it feels like a syringe has been inserted into me, and is sucking out every last bit of energy I have.

Thinking that perhaps it might be toxicity related, I decided to take some charcoal at the time. I noticed that the downward spiral diminished, and I was feeling fairly normal again within about an hour. Whether it was toxicity related, or whether the charcoal helped, I can't say for sure. Just being in bed and able to not have it progress might have been most important of all. It's just hard to tell.

Jenbooks, ever since I started noticing your posts on HBOT, I've had an intuitive feeling that it would be very helpful for me. I did some research to see if I might be able to access it at our local hospital (which just installed two HBOT chambers), but found out Medicare would not pay for it, and it would be ULTRA expensive (like about $2,000 per session). I seem to remember HBOT clinics charge about $100 per session, so I don't know what gives.

I'm going to approach our local health spa (alternative oriented, which is where I get my FIR saunas), and see if they might consider some kind of HBOT service. Would sure be great if I could do some HBOT sessions as part of a health spa service.

It looks like I should probably do some research on glutamate upregulation. I've wanted to in the past, but I just have such limited cognitive energy to do very much. But both yours and Lisa's comments make me think it might be important to learn more about. Thanks both for your comments.

Wayne

 

[slayadragon]

Sounds like a seizure, and given that, I would assume it is 1) sympathetic arousal 2) zinc-related? Kindling in epileptic seizures can be dampened, and seizures prevented, with zinc, a finding that has been around for about 25 or more years and 3) glutamate upregulation, so common in these illnesses, thus magnesium, and/or benzos would help.

Hyperbaric oxygen also prevents this.

The kindling sounds right to me.

I'm sure that I came into contact with this same stuff many times before my unfortunate visit to Lake Tahoe. It only was after that big slam that it started to have an effect on me in other places in the same way though.

Here's an article about the sea otters.

That's really interesting about the hyperbaric oxygen. I just had a treatment with UVB, which seems (amongst other effects) to do the same thing as hyperbaric oxygen.

It feels like it was a good thing for me. My reactivity seems to have gone down noticeably. Perhaps that's part of the reason why.

Thanks, Lisa

*

Toxicon. 2010 Aug 2. [Epub ahead of print]
Domoic acid induced seizures progress to a chronic state of epilepsy in rats.

Muha N, Ramsdell JS.

Marine Biotoxins Program, Center for Coastal Environmental Health and Biomolecular Research, National Oceanic and Atmospheric Administration, National Ocean Service, Charleston, South Carolina 29412.
Abstract

The emergence of an epilepsy syndrome in sea lions poisoned by domoic acid (DA) draws striking parallels to the single case study of temporal lobe epilepsy (TLE) that developed in an 84 yr old man one year after being poisoned by DA. To establish a basis for understanding this disease in sea lions and humans that appears to progress from DA poisoning, we have investigated the potential for a single incident of DA poisoning in rats to progress to spontaneous recurrent seizures (SRS), the hallmark of epilepsy. We have developed a DA administration protocol to induce a nonlethal status epilepticus (SE) and monitored the animals for SRS by six hours/week of video recording. We demonstrate that a single episode of SE leads to SRS in 94% of rats (n=23) in 6 months. These findings indicate that DA induced SE can efficiently translate to epileptic disease.

PMID: 20688097 [PubMed - as supplied by publisher]

 

[InvertedTree]

I just ran across this item today (below), and thought it described very well some of the "spells" I've experienced over the years. I think it's been a few months since I've had one of these, but I live my life with a general awareness that one of these can come up at any time. Though it's usually some type of over-stimulation that triggers this for me, it can also come about for no apparent reason.

Anyway, I thought I would pass it along. For me, experiencing one of these is always a reminder of how tenuous my hold is to this physical world. These "sensory storms" leave me with a feeling that at any time, something fairly minor could come along and "tip me over" (can't really give say what a good definition of that feeling would be). This realization doesn't necessarily bother me, and can actually be a reminder to appreciate life as it is right now. -- Wayne

Sensory Storms

I've been reading a book written 10 years ago called Chronic Fatigue Syndrome: a Treatment Guide by Erica Verrillo and Lauren M. Gellman. I'm finding it helpful in understanding some of my symptoms.

I found a description which pretty much matches these weird terrifying experiences. It is some sort of seizure like activity. Seizures are often preceded by a feeling that something bad is about to happen. Anyway, here is the description from the book (p. 116):

"Sensory Storms"
Dr. Luis Leon-Sotomayor, the cardiologist who documented the 1965 CFIDS epidemic in Galveston, Texas, described a type of neurological dysfunction that he called a "sensory storm." These storms affect the autonomic nervous system (regulated by the hypothalamus). A person experiencing a storm may first see an aura or sense that something very bad is about to happen. Storms produce sweating, pallor or flushing, elevated blood pressure, slowed respiratory rate, tachycardia, dizziness, and the feeling that one is about to lose consciousness. These autonomic storms are terrifying, but the effects generally pass within an hour. After such an experience a person may feel lingering tiredness or malaise...

People who have warnings of impending seizures or seizure-like episodes, either in the form of a rapidly escalating sense of urgency, surges of strange sensations, intense fear or rage, "spaciness", or any kind of sudden perceptual disturbances can sometimes prevent their full manifestations by immediately withdrawing from all sources of stimulation and entering into a relaxed state through meditation, relaxation exercises, or self hypnosis techniques. This has the effect of changing the brain wave frequency to alpha waves.

How funny. I just saw this exact thing on a blog I read over the weekend. It definitely describes things I've been through.

Can't remember the name of the blog but aren't we supposed to quote sources of where things come from? I seem to remember going through this last year about copyright stuff from blogs.

Excellent find though!

 

[slayadragon]

Thinking that perhaps it might be toxicity related, I decided to take some charcoal at the time. I noticed that the downward spiral diminished, and I was feeling fairly normal again within about an hour. Whether it was toxicity related, or whether the charcoal helped, I can't say for sure. Just being in bed and able to not have it progress might have been most important of all. It's just hard to tell.
Wayne

First priority for me is to get away from this stuff as fast as possible. One good slam of it could keep me sick for months.

Second priority is a ton of cholestyramine. Even when I wasn't able to take much csm on a regular basis, my system really craved it after being hit with that particular toxin.

Ordinarily, if people take csm, it's sucking out just the normal amount that's floating around in the body. In that case, removing it will cause more to get dislodged from tissues, thus causing a herx as it moves out of the body.

(According to Shoemaker in Desperation Medicine anyway.)

When getting hit with a really bad outdoor toxin, the rules change. The goal, for me, is to suck up as much of it as possible, before it gets deposited in the tissues.

Shoemaker comments that the dissociation constant for ciguatera, also an aquatic biotoxin, is really low. Once it gets stuck in the tissues, it's very hard to get it out. That's why people with that sort of poisoning find it so hard to get well.

I'm not sure what the dissociation constant for this particular toxin is, but my sense is that it doesn't come out really easily either. Thus, taking proactive action to get it out of the system while it's still floating around seems to me to be prudent.

Best, Lisa

 

[Enid]

It is a very good description of what actually happens and how to cope. The Hypothalamus involvement crops up again and again.

 

[klutzo]

Wayne,
I had these "storms" at least once every night for 6 mos. of the year, getting progressively worse with more and more symptoms, awakening me from sleep, for 12 years, starting after I developed heart valve prolapses. Besides having all of the symptoms you described, I also lost everything in my bowel very rapidly (a symptom of extreme fight or flight), and so had to stay in the bathroom for the entire 1 1/2 hr. episode and I had all the symptoms of heart attack. I was afraid to go to sleep.

Each episode left a kindling effect, making future episodes much more likely. I would have to move slowly and avoid all stimulation, sometimes for weeks. In addition, the episodes began each year within 2 weeks of the change from daylight savings to regular time in autumn, and ended within two weeks of the reverse in spring. Since I live in west central Florida, this prevented me from enjoying our entire nice weather period. Note: panic attacks increase in severity and frequency in winter, and even most psych docs don't know this. (I was a psychiatric social worker before I got sick).

Too much noise, heavy traffic, having to hurry or over-exertion, a scare like someone running a red light in front of me, a quick change from a hot room to cold outdoors.....all of these could trigger an attack as well.

For over a decade I tried to convince my doctors these were extreme panic attacks, brought on by a too loosely controlled ANS, which is a proven problem in FMS, one of my dx's. They kept reminding me that panic by definition has a 15 min. limit, and that my attacks were not only too long but too severe. I felt that Lyme caused it's own type of panic, and I also was dx'd with Lyme. Many years later, I read that Dr. Klinghardt wrote that Lyme panic attacks last 1 1/2 hrs., exactly how long mine lasted.

They tested me repeatedly for benign adrenal tumors (pheochromocytomas) and not so benign catecholamine secreting metastatic tumors (carcinoid syndrome). Holter monitors and stomach probes were employed. No dice. A sleep lab uncovered apnea, and I was told the attacks would stop when I started using CPAP. They didn't.

I was taking zinc and large amts. of magnesium this whole time, and still do. IMO, anyone with an MVP should take lots of Mg, and anyone with Lyme who does not take lots of Mg is committing suicide.

Then the cardiac event monitor was invented. My doctor fitted me with one, I went to bed that night, woke up at 2:30 am having a "storm", phoned in the tape recording of my heart, and by the next morning I had the answer to 12 years of sheer hell. I had Paroxysmal Supraventricular Tachycardia aka PSVT.

A drug called Verapamil ER at a dose of 240 mgs. daily has lessened the severity of the attacks. I cannot take enough of a dose to end them, since it lowers my pulse too much. Isn't our drug sensitivity a pain! I have found that adding large amts. of L-tryptophan at bedtime (1,500 mgs.) and again when I wake up around 2-3 am (another 1,500 mgs.) have stopped the attacks entirely at night for a few years now, but it must be combined with avoidance of things that are major triggers to stop them during the day. This has limited my life severely, but I cannot tolerate the attacks and would rather die than have them again. I no longer walk outdoors any further than the mailbox, drive a car unless I have one of hose very rare days where I feel like my heart is normal, or go to any crowded or noisy places, or anywhere I cannot reach a bathroom immediately. (If you wonder why I don't take the stronger 5-HTP instead of L-tryptophan, it is contraindicated in people with high blood pressure. It is too strong of a vasoconstrictor).

I am not saying PSVT is your problem, but I know of many other people with a dx of either Lyme or CFS who have been dx'd with PSVT. All of them I know of except me have had the procedure to burn away the extra electrical loop in the heart that causes it. This is a a very expensive procedure, taking from 2-8 hrs. during which the patient must be wide awake. You stay in the hospital for one more day. I do know someone with a life-threatening autoimmune disease who is also on Verapamil like me and is not having the procedure, but that is because she is not considered healthy enough to endure it. It is NOT fun.

My heart doctor (finally) agrees with me that there is a major panic attack component in my case which triggers the PSVTs, since L-tryptophan has zero effect on PSVTs, yet it helps me so much, so he thinks I am not a good candidate for the procedure, which is called radio-frequency ablation. He thinks it would stop the abnormal heart rhythm, but not any of the other symptoms, ie. flushing, high blood pressure, purple feet, explosive diarrhea, terror, telescoping blackout if I try to walk, burning face, freezing or burning arms, waves of plain tachycardia, a desire to run away, and all of the symptoms of a major heart attack.

The difference between inappropriate sinus tachycardia, which is what usually comes with plain panic, is that it rarely goes above 130 bpm. PSVTs go to 160 or more and you lose the back beat. Instead of thump-bump, thump-bump, your heart just goes thump,thump,thump, etc.

This may be TMI for you, but someone reading this may recognize themselves in my description, since my symptoms do include all of yours.

klutzo

 

[slayadragon]

Okay, this is really helpful.

Erik has encountered this "stuff" frequently, because he's spent most of his adult life in the Bay Area and in Lake Tahoe. It's very prevalent there.

What he has found is that when he is being severely affected by this stuff, people around him will unexpectedly drop dead of heart attacks.

This has happened repeatedly.

He says he never thought it was a coincidence, because heart palpitations and heart pain were his main symptoms when he encountered it.

People think of his story as "mold avoidance" and thus think it was just the stuff inside buildings that he was avoiding.

But it's this outside stuff that was the killer. Literally.

Once he got away from it, and stayed out of really bad buildings, he recovered.

I think that this is the same sort of heart disease that kills the sea otters, but I'm not absolutely sure. I need to get someone who knows something about heart problems to read the relevant articles and let me know.

Klutzo, Wayne: Have you experienced these storms everywhere you've lived or traveled? Are there places that you've spent time that you've not gotten them?

Thanks, Lisa

 

[Wayne]

aren't we supposed to quote sources of where things come from?

Hi Inverted Tree,

I have somewhat of a background in publishing, so am sensitive to copyright issues in general. I have to admit however that I don't know technical specifics.

In my mind, I thought providing the link, "Sensory Storms", along with the reference to the book and author that the two ensuing paragraphs were from would be sufficient.

I was wondering if anybody might have some copyright insights to offer on this particular circumstance. -- Thanks much.

Wayne

 

[Wayne]

Wayne,
I had these "storms" at least once every night for 6 mos. of the year, getting progressively worse with more and more symptoms, awakening me from sleep, for 12 years, starting after I developed heart valve prolapses. Besides having all of the symptoms you described, I also lost everything in my bowel very rapidly (a symptom of extreme fight or flight), and so had to stay in the bathroom for the entire 1 1/2 hr. episode and I had all the symptoms of heart attack. I was afraid to go to sleep.

Dear Klutzo,

Thank you very much for your detailed and informative response. I think I'll jot a few thoughts (in blue font) after some of your comments. I hope that works out.

In your above paragraph, you mention losing control of your bowels. The "sensory storm" spells that I mentioned are actually very similar to the ones my mother experienced for many years. When she had them, she would pass out, and lose everything in her bowels. Your description gives me some insight as to what my mother went through. Her mother (my grandmother), also had "spells". It was not uncommon for us kids to hear, "Grandma's having another spell", and my Mom would go over to care for her.

Each episode left a kindling effect,

I'm not sure what a "kindling effect" is. I'll probably look it up sometime unless somebody could give me a brief description or explanation.

making future episodes much more likely. I would have to move slowly and avoid all stimulation, sometimes for weeks. In addition, the episodes began each year within 2 weeks of the change from daylight savings to regular time in autumn, and ended within two weeks of the reverse in spring. Since I live in west central Florida, this prevented me from enjoying our entire nice weather period. Note: panic attacks increase in severity and frequency in winter, and even most psych docs don't know this. (I was a psychiatric social worker before I got sick).

Too much noise, heavy traffic, having to hurry or over-exertion, a scare like someone running a red light in front of me, a quick change from a hot room to cold outdoors.....all of these could trigger an attack as well.

For over a decade I tried to convince my doctors these were extreme panic attacks, brought on by a too loosely controlled ANS, which is a proven problem in FMS, one of my dx's. They kept reminding me that panic by definition has a 15 min. limit, and that my attacks were not only too long but too severe. I felt that Lyme caused it's own type of panic, and I also was dx'd with Lyme. Many years later, I read that Dr. Klinghardt wrote that Lyme panic attacks last 1 1/2 hrs., exactly how long mine lasted.

I find this very interesting about "Lyme panic attacks". I've also be diagnosed with Lyme, and I feel pretty certain that my mother had it as well. I've wondered if some of the health issues in certain failies that are often attributed to genetics, are instead pathogenic conditions passed along through birth (can't think of the correct word for this phenomenon at the moment).

They tested me repeatedly for benign adrenal tumors (pheochromocytomas) and not so benign catecholamine secreting metastatic tumors (carcinoid syndrome). Holter monitors and stomach probes were employed. No dice. A sleep lab uncovered apnea, and I was told the attacks would stop when I started using CPAP. They didn't.

I was taking zinc and large amts. of magnesium this whole time, and still do. IMO, anyone with an MVP should take lots of Mg, and anyone with Lyme who does not take lots of Mg is committing suicide.

I think I'll up my magnesium intake; thanks for the tip.

Then the cardiac event monitor was invented. My doctor fitted me with one, I went to bed that night, woke up at 2:30 am having a "storm", phoned in the tape recording of my heart, and by the next morning I had the answer to 12 years of sheer hell. I had Paroxysmal Supraventricular Tachycardia aka PSVT.

A drug called Verapamil ER at a dose of 240 mgs. daily has lessened the severity of the attacks. I cannot take enough of a dose to end them, since it lowers my pulse too much. Isn't our drug sensitivity a pain! I have found that adding large amts. of L-tryptophan at bedtime (1,500 mgs.) and again when I wake up around 2-3 am (another 1,500 mgs.) have stopped the attacks entirely at night for a few years now,

This is an amazing discovery regarding your experience with l-tryptophan (that nasty amino acid according to the FDA, right?). Well, it seems to be a miracle supplement for you. I think I'm going to experiment with some l-tryptophan to see whether it might stabilize me as well.

but it must be combined with avoidance of things that are major triggers to stop them during the day. This has limited my life severely, but I cannot tolerate the attacks and would rather die than have them again. I no longer walk outdoors any further than the mailbox, drive a car unless I have one of hose very rare days where I feel like my heart is normal, or go to any crowded or noisy places, or anywhere I cannot reach a bathroom immediately. (If you wonder why I don't take the stronger 5-HTP instead of L-tryptophan, it is contraindicated in people with high blood pressure. It is too strong of a vasoconstrictor).

I am not saying PSVT is your problem, but I know of many other people with a dx of either Lyme or CFS who have been dx'd with PSVT. All of them I know of except me have had the procedure to burn away the extra electrical loop in the heart that causes it. This is a a very expensive procedure, taking from 2-8 hrs. during which the patient must be wide awake. You stay in the hospital for one more day. I do know someone with a life-threatening autoimmune disease who is also on Verapamil like me and is not having the procedure, but that is because she is not considered healthy enough to endure it. It is NOT fun.

I doubt I would do something so dramatic as the procedure you describe, as the thought of any kind of surgical impact on my system makes me quiver. My symptoms are not severe enough to go forward with that kind of risk/benefit equation.

My heart doctor (finally) agrees with me that there is a major panic attack component in my case which triggers the PSVTs, since L-tryptophan has zero effect on PSVTs, yet it helps me so much, so he thinks I am not a good candidate for the procedure, which is called radio-frequency ablation. He thinks it would stop the abnormal heart rhythm, but not any of the other symptoms, ie. flushing, high blood pressure, purple feet, explosive diarrhea, terror, telescoping blackout if I try to walk, burning face, freezing or burning arms, waves of plain tachycardia, a desire to run away, and all of the symptoms of a major heart attack.

The difference between inappropriate sinus tachycardia, which is what usually comes with plain panic, is that it rarely goes above 130 bpm. PSVTs go to 160 or more and you lose the back beat. Instead of thump-bump, thump-bump, your heart just goes thump,thump,thump, etc.

This may be TMI for you,

I may have missed something; I'm not sure what TMI is.

but someone reading this may recognize themselves in my description, since my symptoms do include all of yours.

klutzo

Thanks again Klutzo for taking the time and energy to post all this very interesting information. I'm going to come back and read it again tomorrow; seems there's much to be gleaned from it. Thanks! :Retro smile:

 

[Forbin]

I claim no expertise in this, but the symptoms described as a "sensory storm" seem to be very similar to what is experienced when a large amount of adrenalin is released into the body.

Apparently, this can happen in response to a sudden drop in blood sugar (hypoglycemia).

There is a pretty good description of how this might work here:

http://www.gicare.com/diets/hypoglycemia.aspx

I experienced similar symptoms during the first years of my illness, which is when my symptoms were most severe. Even back then (1983), my GP had used the term "reactive hypoglycemia" for these symptoms and said it was an effect of a "post viral syndrome."

There may be other explanations, but I'm currently of the opinion that there is something about CFS that screws up how your body handles sugar (like how fast you metabolize sugar, or just how the system reacts to varying levels of sugar) - at least in some cases. Perhaps this has something to do with inflammation of the digestive tract, which I also experienced at that time.

I'm not suggesting that sugar metabolism this is the central cause of CFS symptoms, rather that problems with sugar handling are somehow a secondary effect of a chronic infection and that the "sensory storms" might be a follow on effect of the resulting adrenalin release in response to hypoglycemia.

That's just my guess at the moment...

 

[jenbooks]

In regards to UVB and hbot they are not the same nor similar.

Pressure in HBOT shifts you into parasympathetic; sensory storms are surely sympathetic overdrive. Oxygen in tissues fixes all kinds of problems, too long to detail.

UVB damages, thru direct application of radiation, the small portion of blood passing thru thd machine. Radiation damage elicits an immune and repair response so the damaged blood when returned to the body generally leads to heightened immune and repair functions. Any doc who tells you it cleanses the blood with light is giving you a fairytale. I don't know the risk with radiation damage but surely there is some especially with regular use. I had a few such treatments decades ago in hopes of treating chronic Candida. My white blood cell count went from normal (5-6000) to very high normal (9-10,000) and stayed there for a year. I was not happy as clearly that is not my genetic setpoint. I'd never try those treatments again, personally. I know, I know, your doctor will tell you it's perfectly safe.

Regarding causes of storms who knows. It doesn't sound like biotoxins are the cause in Wayne's family not were they Klutzo's problem. I haven't had these symptoms personally but I do jnow the hbot helps me feel calm and whole.

 

[slayadragon]

UVB damages, thru direct application of radiation, the small portion of blood passing thru thd machine. Radiation damage elicits an immune and repair response so the damaged blood when returned to the body generally leads to heightened immune and repair functions. Any doc who tells you it cleanses the blood with light is giving you a fairytale. I don't know the risk with radiation damage but surely there is some especially with regular use. I had a few such treatments decades ago in hopes of treating chronic Candida. My white blood cell count went from normal (5-6000) to very high normal (9-10,000) and stayed there for a year. I was not happy as clearly that is not my genetic setpoint. I'd never try those treatments again, personally. I know, I know, your doctor will tell you it's perfectly safe.

This is useful.

Clearly the idea of its cleansing the blood of any sort of pathogens or toxins makes no sense. Such a tiny percentage of the total amount of blood in the body goes through the machine that there's no way it's going to make a dent in the overall load. And radiation of any sort does seem like it innately should have some risks.

The reason I think it conceivably could be helpful is because of the apparent immune modulating capabilities. This only has been studied in the context of doing this with a drug added to sensitize the cells to the UV light, by "mainstream" medicine. But that seems to me like a turbo-charged version of this treatment, not something that works in totally different ways.

Here's an article on the immune modulating theory.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2249.2007.03372.x/full

>In addition to lymphocyte apoptosis and DC induction, the clinical response to ECP in patients with chronic GVHD has been associated with an increase in natural killer cells, induction of the regulatory T cell subset and a change in the cytokine profile [8,22,39–42].

I think this is consistent with "heightened immune and repair functions," though the T reg component seems more like it's more "straightened out" functioning rather than a heightened one.

Of all that a treatment conceivably could do for me at this point in my recovery, it seems like this could be the most helpful.

I don't think that this is something that's going to be a permanent fix for people who have other stresses on their system pulling it down (e.g. a severe glutathione problem, big toxic exposures or burden). There's only so much any treatment can do to counteract contradictory forces, and it was my intuition that this one would be dangerous if done too often. It's not something I'd want to have done every week for the rest of my life, for sure.

But I think there's something to be said (as Gerwyn points out) that these viral infections don't go away on their own, even if you fix the "stress" factors (in my case, toxic exposures and burden) completely. The underlying immune dysfunction (e.g. the TH1/TH2 shift) makes that unlikely. And insofar as the viruses are out of control, the underlying immune dysfunction is going to stay in place.

I think that could be why people like Erik and Jonathan have their mold reactivity remain high after years and years of successful extreme avoidance. If the viruses are the driver, and the viruses don't go away on their own, then the reactivity (which Gerwyn thinks is caused by the viruses) is going to stay high. And it's my experience that the thing that made the biggest dent in my reactivity has been antivirals, so what he's saying makes sense to me.

So my hope with this is that a few treatments will modulate my immune system enough to reduce the viruses enough to reset everything, and thus allow it to be able to keep the viruses in check without relying on permanent antiviral or retroviral drugs. Those drugs have their own risks, and (Gerwyn says) also don't do anything to get at the viral reservoirs. Presumably the body's own natural defenses are better at that, though it depends on the (yet unknown) mechanisms that XMRV (or whatever we're calling it this week) use as evasion strategies.

My doctor tried to explain to me the idea of this having an effect on the monocytes when we talked, though he didn't use the words "immune modulator" or talk about the T regs or NKC activity. I don't think he uses this treatment very much on most CFS patients, and especially not ones who are debilitated, and I can see why. Usually they have a constant pull downwards (though even he doesn't fully understand the role that the toxins have in all this, in my opinion). He mostly uses it for Hepatitis C and AIDS patients who are showing symptoms, or for people with infections that are wholly antibiotic resistant, with a limited number of treatments (e.g. 2-6) over a period of a couple of months. In my case, he suggested three treatments over a period of six weeks.

This is consistent with how the treatment is used by mainstream medical practitioners (officially to treat lymphoma, a cancer that's closely enough tied to CFS that it seems there has to be causal link). They use a couple of treatments to address a serious problem that can't be fixed in other ways, rather than on an ongoing basis to treat less serious issues or for general health (which is how alternative practitioners appear to use it).

But the idea that even a few treatments can have a long term effect on the WBC's is sobering. I don't see that in any of the mainstream literature either, even with the ramped up version using the drugs to increase the potency of the treatment. I wish I knew the mechanism.

In my case, it feels like this one treatment shifted something fundamental in my system. I've very rarely had that happen with any other treatments that I've used throughout this whole ordeal/adventure. I actually hated to think that just the oxygenation of the blood was responsible for this, and it felt much more profound than that anyway. So hopefully it will last.

Thus far, the only harm that this doctor has done to me (to my knowledge) in the dozen years I've been seeing him is to fail to tell me that I needed to look for mold in my house and move out immediately if I found it. It's not like he didn't know that toxic mold was a bad thing, long before I did. Maybe he gets such resistance from patients in doing this that he doesn't even bother, I don't know.

Doing this merely to oxygenate the blood (even if it does that) sounds like a very bad idea indeed.

Thanks, Lisa

 

[floydguy]

I claim no expertise in this, but the symptoms described as a "sensory storm" seem to be very similar to what is experienced when a large amount of adrenalin is released into the body.

Apparently, this can happen in response to a sudden drop in blood sugar (hypoglycemia).

There is a pretty good description of how this might work here:

http://www.gicare.com/diets/hypoglycemia.aspx

I experienced similar symptoms during the first years of my illness, which is when my symptoms were most severe. Even back then (1983), my GP had used the term "reactive hypoglycemia" for these symptoms and said it was an effect of a "post viral syndrome."

There may be other explanations, but I'm currently of the opinion that there is something about CFS that screws up how your body handles sugar (like how fast you metabolize sugar, or just how the system reacts to varying levels of sugar) - at least in some cases. Perhaps this has something to do with inflammation of the digestive tract, which I also experienced at that time.

I'm not suggesting that sugar metabolism this is the central cause of CFS symptoms, rather that problems with sugar handling are somehow a secondary effect of a chronic infection and that the "sensory storms" might be a follow on effect of the resulting adrenalin release in response to hypoglycemia.

That's just my guess at the moment...

I definitely get hypoglycemia and it usually occurs in conjunction with some external biotoxin/chemical exposure. It usually happens during the winter when my body is weakest. Most docs don't understand what is happening and try to brush it off as a panic attack when this is most definitely not what is happening. I've even laughed during such attacks - here we go again! It sometimes feel likes I've just taken a hit of acid or some other hallucinogenic.

 

[slayadragon]

I definitely get hypoglycemia and it usually occurs in conjunction with some external biotoxin/chemical exposure. It usually happens during the winter when my body is weakest. Most docs don't understand what is happening and try to brush it off as a panic attack when this is most definitely not what is happening. I've even laughed during such attacks - here we go again! It sometimes feel likes I've just taken a hit of acid or some other hallucinogenic.

Where have you been when these attacks come on? You don't recall any particularly memorable ones at the beginning of your illness, do you?

This "stuff" rears its ugly head more in winter, it seems. I wish I knew why.

Best, Lisa