OK...Here goes with my symtoms

[grizzly]

A few years ago I was diagnosed with fibromyalgia. This past year I was also diagnosed with small fiber neuropathy.

So I see overlapping symptoms, but I still have some apprehension in believing I have Fibro. I have a lot of the pain symptoms, but I'm pretty active. I have the fog, but I also have PTSD. I have the extreme headaches as well as IBS.

Every one of my labs look very normal with the exception of my copper which is 2 point lower than normal.

But I have a few conditions which are rather annoying. Once is the onset of hyperhidrosis. I could be cold but my armpits and hands are sweating. This began about 12 years ago when my other symptoms began really flaring up.

The other condition is at night, nearly the same time at night I am awoken from sleep with a numbness and tingling in the roof of my mouth. This is followed by extreme pain throughout my boy. Almost like my bones and muscles are exploding. My face and hands feel as if they're on fire. This goes on for 10 minutes maybe. I get a stabbing headache where it feels like a rod is being shoved in my eye. My eye waters and my nose runs and is congested. Then it's followed up by an evacuation of my bowels. I've monitored this and I can literally lose 4 pounds afterwards.

Once this reaction is done, I'm exhausted the next day.

3 different doctors have nothing to say about it. One thinks it a panic attack. It's not. I just don't know what to make of it. Sometimes I'm wondering if its killing me.

 

[Remy]

The other condition is at night, nearly the same time at night I am awoken from sleep with a numbness and tingling in the roof of my mouth. This is followed by extreme pain throughout my boy. Almost like my bones and muscles are exploding. My face and hands feel as if they're on fire. This goes on for 10 minutes maybe. I get a stabbing headache where it feels like a rod is being shoved in my eye. My eye waters and my nose runs and is congested. Then it's followed up by an evacuation of my bowels. I've monitored this and I can literally lose 4 pounds afterwards.

Welcome to the forums, @grizzly !

Have you considered mast cell disease? What you describe sounds an awful lot like how people describe severe histamine attacks.

Mast cell issues can also cause pretty severe dysautonomia.

 

[grizzly]

Welcome to the forums, @grizzly !

Have you considered mast cell disease? What you describe sounds an awful lot like how people describe severe histamine attacks.

Mast cell issues can also cause pretty severe dysautonomia.

My PCP had ran all the labs for that at one point. I went to a specialty clinic in NJ and it was also ruled out. What was ruled in was basically I have Gulf War Illness due to toxicological environmental exposure.

I'm determined to find out what's triggering this and what can prevent the triggers.

 

[AquaFit]

Hi Grizzly,
Sorry to hear all you're going through - it's awful, I've been there and would still be having a lot of pain if not for reading everything I could (including many studies) and then learning more and more about human biology every day and thinking for myself. Too many people leave their whole illness in the hands of a few medical professionals or scientists who can only see one part of the disease which are the patients who come to them or the patients in studies they enroll or the mice, fruit flies, etc. they're researching.

So. I don't have all the answers. I've also had orgonophosphate poisoning as a fetus and developed EDS/CFS/ME symptoms throughout my life. The pain for me came decades after I was born. You and Remy and your doctors were probably on the right track - your vagal nerve is probably signalling mast cells to release cytokines and most likely in your case as in many of us, it's he neurotransmitter histamine that is out of balance. But not in and of itself. In our case, organophosphate poisoning throws off acetylcholine balance.

Here's a webpage by Cornell University which studied this : http://pmep.cce.cornell.edu/profiles/extoxnet/TIB/cholinesterase.html

ACETYLCHOLINE is made more powerful in some instances and in other instances made less powerful by histamines.

Here's a biological writeup on how the vagal nerve releases histamine and acetylcholine : https://books.google.ca/books?id=i-...y vagus nerve acetylcholine histamine&f=false

Why are you getting these symptoms at night? At night the vagal nerve gets to work repairing the body. The main neurotransmitter it uses to get a number of jobs done including slowing heart rate so we can enter the phases of REM sleep, etc. is acetylcholine. You can find reputable biology sites on line which talk about the vagus nerve. Don't bother with the yoga and psychiatric sites right now. Just the biological ones. Psychiatrists have developed a reprehensible explanation of the vagus nerve blaming the patient and turned it into a great business for pharmaceuticals to sell pills to way too many people on this planet. And yoga sites can be well, a little fruity when it comes to biology.

Before you go for tests, (but you may want to have a conversation with your doctor to ensure your next plan of action is safe) you could try out ways to increase your acetylcholine through your diet and minimize histamine release. Thank goodness for reputable sites on the web that give great information but really, this should be the first line of treatment for anyone showing up at doctor's offices with EDS/FM/CFS/ME symptoms. For decades medicine has been about separating symptoms and treating them one at a time with a pharmalogical product, rather than looking at the body as a whole and asking, how can we restore balance? There's a medical word for body balance which was buried and is finally starting to be used by doctors again, homeostasis. It's like our body is a spinning top and anything that hits it can throw the top off it's balance. For us, if our acetylcholine is either low from birth or not getting the signal out to the nerves, our bodies can be thrown out of homeostasis more easily. As a starting point, right now, it's fairly easy to do the following and see if it makes a difference. Yes, researchers may come up with a pill that will stop symptoms to some degree. I'd rather have a healthy body that stopped producing symptoms to the extent possible.

Minimising Histamines
Diet - processed foods, including pasta, bread, rice: cut out for awhile completely if you can. cut out coffee, only have organic teas. Eat meats that have grazed on non pesticide sprayed grass and haven't been pumped with antibiotics. Eat a big variety of organic veggies cause they will have minimal pesticides and they are the energy sources that helps provide the ingredients for neurotransmitters and the energy that powers them.

Cleaning products: Baking soda and vinager and castille soap clean everything. Recipes online at David Suzuki's site. Or I find Ecover products great. (With baking soda and vinager added to the washing machine for laundry.) Air freshener, perfumes, colognes, etc. - sends poisons to the bloodstream via the lungs which have no filters. Our digestive system at least has the filters of kidneys, liver. Breathing Pinesol sent me to bed with horrible pains and I didn't know what was happening at first.

Medications: This is controversial. Not the science, the politics. I have a naturopath who worked with and MD for seven years to develop tinctures that can replace meds. I see her, an MD and various specialists. I recently had a period that wouldn't stop and I got migraines and cyclic vomiting from tranxemic acid. My naturopath made a tincture, sent the ingredients via email to me which I forwarded to my doctor and guess what, my period stopped from the tincture within 2 days. No side effects. I'm fortunate though. Many naturopaths are not this good and sometimes we need rescue medicines from Big Pharma which hasn't developed much in the way of non-synthetic compounds. If you do need Big Pharma medicine (and I may still as well) then you may want to talk to your doctor now rather than later about checking to see if acetylcholine signalling is an issue for you. Why? Anticholergenics block acetylcholine receptors. All the "anti" meds. Antihistamine, antibiotics, antivirals. Also anesthesia. I just found this out recently. I've lost hearing because antibiotics are ototoxic for me. A friend of mine almost stopped breathing completely during surgery for a scary too long period of time due to anesthesia, it's believed.

Interestingly, Alzheimers medications target acetylcholine receptors, trying to boost acetylcholine. As they've been well funded, there's a full list of anticholinergenic meds to avoid and their alternatives which are distributed to doctors for them. But an anticholinergenic is the same no matter what the condition it's applied to. List here:

http://www.dementiacarestrategies.com/Medications_to_Avoid_in_People_with_Dementia.pdf

Massage: Google "The Perrin Technique". Should be a good masseuse or osteopath near you that will be able to do this. Works toxins out of the system.

Stress: Releases histamines. 'Nuff said. Namaste. http://greatist.com/fitness/military-uses-yoga-cure-ptsd-121712

Increasing Acetylcholine:

It seems contraindicated to increase acetylcholine when the first organophosphate injury jammed it up in the receptors. I don't understand the exact science and it's still being studied. I do know the body is about balance and it's complicated. Seems to work well for me.

Diet: Google acetylcholine diet. Livestrong has some good info. I buy eggs from an organic farmer I trust and eat them only softcooked or raw. I always wash the eggs before cracking with warm water and mild dish soap cause that's where pathogens are, the shell and that could make us really sick!

Excercise: Apparently it's not enough to have acetylcholine in the body, we need to get it moving through the system. Short bursts of exercise in a pool is what works really well for me. Like, one minute on, one minute off times 8 reps or whatever you can handle. Preceded and ended with gentle stretches. Dr. Peter Rowe at John Hopkins has found that stretching the limbs to far too long exacerbates symptoms. When you feel the stretch, stop and hold it for 30 seconds or so. Don't lift arms overhead too much.

Beyond the above: Don't lift anything too heavy for now. Get up after 20 minutes of sitting & walk around. Try to avoid driving long distances. Dr. Rowe found sitting with leg extended for too long will exacerbate symptoms.

Hope this may help you get started on a path to wellness! All the best.

 

[AquaFit]

Grizzly, I forgot to tell you Vitamin D. Ask your doctor to check your vitamin D levels and Dr. Klimas recommends keeping them in the top end of the recommended range. I like AOR liquid brand. I also take Vitamin K2 daily to help send the vitamin D to the right places in the body. Some people (Ehlers Danlos genes?) will have oral vitamin D end up in their tissues which calcifies, K2 prevents this. Also magnesium glycinate (highly absorbable). I started out with 4-7 pills a day when I was in pain. Douglas laboratories has a very good brand. If you take magnesium orally, be mindful of epsom salt baths which add magnesium to your body too.

I also forgot to say drink at 1 1/2 to 2 litres of water a day if you can. This will flush toxins out of your system. Sometimes when I have a busy day I "water load". That is, I drink a bottle of cool not cold water at breaks instead of a snack. Other breaks I'll have a handful of chocolate almonds or dried prunes, etc. ndtea with lemon or just a splash of milk. All knds of organic tea, but if not organic then take the bag out after 30 seconds. Food isn't an exact science, just make sure your adding alkaline to your body to counter the acids that build up.

I start the morning with lemon juice squeezed into water. When I have a sore throat I'll make a drink with hot water, apple cider vinager (organic) honey, ginger, cranberry puree.

There's all kinds of natural gatorade drink recipes online. All good!

 

[grizzly]

@AquaFit, this was fascinating reading and for the first time I'm beginning to put the pieces together on this.

I really appreciate you taking the time to write this up. After researching what you've written it all makes very clear sense.

As you seem very knowledgeable. I have some questions. Is there quantitative testing for people who may have been exposed to toxins such as organophosphates or nerve type agents such as sarin / cyclosarin? I believe I've been exposed to the latter, but not ruling out organophosphates. For me I'm looking back 25+ years, so I'd guess the damage is done which is why basically my labs are negative in every aspect. Looking at all these labs, one could easily say that I'm very healthy. But I feel far from healthy.

Looking back, I spent some time in the Caribbean where the majority of foods consumed were indigenous and organic. I fell in love with the fresh fruits, vegetables and fresh fish. I noticed at the time that my pain symptoms were negligible. I wondered if it was the warm environment but once home, my symptoms began returning.

I have been on Vitamin D and B12 for several years. I've found very little benefit. But I wonder, if I'm not getting enough? I don't have a vit. D of B12 deficiency base on my labs though.

 

[AquaFit]

Just checking in in between family visits!

I'm from Canada, but may I say thank you for your service. You helped to keep many of us safe. I'm so sorry that's come at such a toll on your health.

I've tried to make sense of what I and others have been experiencing and I was fortunate enough to be able to attend the IACFSME conference in Florida last October. The DoD and HHS were there as well as researchers who reported there findings to date on GWI. I was shocked and outraged on your behalf of all you were exposed to. If you haven't read any of the reports, please make sure you're sitting down when you read this: http://www.ei-resource.org/illness-information/environmental-illnesses/gulf-war-syndrome/ I have tears in my eyes now as I'm thinking about it. (The article doesn't explain the source of organophosphates-mosquito repellent impregnated into soldier's uniforms. The uranium was apparently from anti-tank bullets.)

When I was feeling really ill and in bed most days I started a regimen of 10,000IU a day (AOR brand) with 200mcg Vitamin K2 and 4-7 magnesium glycinate per day depending on pain. After 2 months my doctor checked my levels of vitamin D and calcium and my vitamin D was not deficient but still in the low range. I did that for about 3 or 4 months I think and since then I haven't needed as much, but I get my D checked once in awhile. I took amino acid supplements but after awhile they made me feel wired so I just take them occasionally.

 

[grizzly]

Thank you for recognizing my service.

I have read that article. Or many like it through the years. Same story here, the DoD retains many of the files of the war and still maintain these files as classified. I've participated in a lot of GWI research and most the researchers say it they could release some of those files it may very well give an indication of a direct exposure. Nonetheless there were so many exposures where does one start. I was in them all including taking the forced Pyridostigmine Bromide tablets. It is interesting that when I googled Acetylcholine "Sarin" appeared in the 4th paragraph.

From an exposure level, it's hard to say. I received a letter from the DoD in 1997 said that I may have been exposed to sarin / cyclosarin but no no health effects are known. I was in the vicinity (I saw the mushroom cloud from 1 mile out and then went back in to retrieve equipment after the demolition of bunkers at Khamisiyah. 15 of us immediately became sick. We were treated for heat exhaustion. Fast forward...I deal with this. But I have hopes. There are worse off than me.

I'm slowly piecing things together. I'm working with a doctor from Stanford who's overseeing a study for some medication. I'm taking it, it seems promising right now.

I looked back on my labs from a few years ago. I was feeling my worst then. It seems my Vit. D3 levels were 16. This is when a began taking the Cholecalciferol. Recent labs last week show my D3 lever at 35. So I wonder if this is still too low for me even though is just barely above the accepted range.

I'm an engineer by trade. I excelled in math and science 23 years ago when I finished my degree. Today my cognitive memory issues cause me to struggle with my kids 4th grade fractions. I can't make my brain function. Typing this is somewhat a struggle. I worry how long I'll be able to work.

Moving forward. Besides the muscle and joint pain and debilitating headaches I am seeing the dots connected. Hopefully someone smarter than me will steer me in a direction if I'm off-course.

When my biggest attacks occur at around 1:30 at night. I'm awoken by a numbness and tingling feeling in my mouth. I'm thinking something is triggering / stimulating my trigeminal nerve because I get a stabbing pain in my head as if I'm shot in the eye. Nose runs, and eye waters slightly. Major sinus attack like symptoms. Face, hands and feet feel on fire. Body feels like it's twisting into pieces with so much pain. Is this the trigeminal nerve triggering a vagal response due to a histamine reaction? Or the other way around.

I know there is nerve damage due to some exposure. What exposure is inconsequential since there is a lack of specific data. All I can rely on are the symptoms and triggers and how to block or alleviate those.

 

[AquaFit]

Ah. Your headache comes at the same time every night, stabbing "white hot poker" pain in occipital area, single tear in I think the left eye? I may have a direction for you to research.

Cluster headache. Those are the worst headaches of all. I've never had them but I've known people who have.

http://www.mayoclinic.org/diseases-conditions/cluster-headache/home/ovc-20206295

There's a doctor (not CFS or ME) who studied "magic" or psylocibin mushrooms for years and was an outcast amongst his colleagues for studying hallucinogens instead of synthetic medicines. He finally got a grant and now every doctor wants to be his buddy and research with him. They're calling for patients for a study now, this is probably the better one as it uses the mushroom I believe: https://clusterbusters.org/current-...of-psilocybin-is-now-recruiting-participants/ Great forum there too.

I love this Vice channel show "Pharmacopeia". On one episode they checked out mushrooms in Mexico. I'm not sure if the host is a doctor or scientist. Fun video. https://www.vice.com/en_us/article/tonight-on-viceland-hamiltons-pharmacopeia-mushrooms-mexico If you can't access it from USA, it may be on youtube.

May I ask if the doctor at Stanford is trying out an anticholinergic medication on you? Or a chemotherapy drug, perhaps Rituxamab?

 

[grizzly]

Ah. Your headache comes at the same time every night, stabbing "white hot poker" pain in occipital area, single tear in I think the left eye? I may have a direction for you to research.

Cluster headache. Those are the worst headaches of all. I've never had them but I've known people who have.

That's it. Only it usually occurs in the right eye. The VA neurologist originally cast it off as a migraine. I was visiting the War Related Research Center and they referred to these as a different headache than my migraines. Unfortunately I have both. I have just been prescribed oxygen therapy for these headaches.

They could be completely unrelated to anything. But in studying the biology / physiology I do see a link.

The trial I am in is the Kpax Synergy trial.

That other trial is certainly interesting. I may call them.

 

[Cort]

A few years ago I was diagnosed with fibromyalgia. This past year I was also diagnosed with small fiber neuropathy.

So I see overlapping symptoms, but I still have some apprehension in believing I have Fibro. I have a lot of the pain symptoms, but I'm pretty active. I have the fog, but I also have PTSD. I have the extreme headaches as well as IBS.

Every one of my labs look very normal with the exception of my copper which is 2 point lower than normal.

But I have a few conditions which are rather annoying. Once is the onset of hyperhidrosis. I could be cold but my armpits and hands are sweating. This began about 12 years ago when my other symptoms began really flaring up.

The other condition is at night, nearly the same time at night I am awoken from sleep with a numbness and tingling in the roof of my mouth. This is followed by extreme pain throughout my boy. Almost like my bones and muscles are exploding. My face and hands feel as if they're on fire. This goes on for 10 minutes maybe. I get a stabbing headache where it feels like a rod is being shoved in my eye. My eye waters and my nose runs and is congested. Then it's followed up by an evacuation of my bowels. I've monitored this and I can literally lose 4 pounds afterwards.

Once this reaction is done, I'm exhausted the next day.

3 different doctors have nothing to say about it. One thinks it a panic attack. It's not. I just don't know what to make of it. Sometimes I'm wondering if its killing me.

Have you had your autonomic nervous system tested? That attack kind of reminds of an ANS flare that I heard on person with ME/CFS talk about. It came on very suddenly and was pretty debilitating. His came on in response to stimuli, though, not during sleep.

How often does this happen? I wonder if a sleep study could help figure out what's happening?

 

[grizzly]

Have you had your autonomic nervous system tested? That attack kind of reminds of an ANS flare that I heard on person with ME/CFS talk about. It came on very suddenly and was pretty debilitating. His came on in response to stimuli, though, not during sleep.

How often does this happen? I wonder if a sleep study could help figure out what's happening?

I have not @Cort. I am just now at a stage where I've been referred to a neurologist. He's looking at the headaches first and we'll go from there I guess.

 

[AquaFit]

Cort, did the person you're thinking of with the ANS flare have to lie down to deal with the flare or sit up? Cluster headaches have a very distinct pattern where they come on at exactly the same time of day or night, one has to sit up to deal with them, always in the same eye and ends with a tear.

Grizzly, if your headaches are cluster, you may want to avoid MSG and caffeine during the cycle. It's everywhere in processed food, and labeled with alternative names like "malted barley flour". Here's a list: http://www.truthinlabeling.org/hiddensources.html

You mentioned oxygen helps - do you have a mask so that you're breathing it in at your own relaxing pace rather than having it forced into your nostrils?

I just checked out the forums at clusterbuster-they're not the same. Big Pharma's stepped in on the action.

K-Pax - I received a bottle in the "loot bag" at the IACFSME conference. It's manufactured from a Pharma point of view. 160mg of caffeine is a cheap way to increase the absorption of the amino acids, but some have genetics that are sensitive to caffeine. I had to cut it out completely. I had my genes decoded by 23andme.com and found I'm caffeine sensitive. It is a drug. Cardiologist Dr. Steven Sinatra has done a lot of research on amino acids and I've taken his mitochondrial cocktail. You can get the supplements at any health food store or even order them online and avoid the caffeine if you wish. His book is "Metabolic Cardiology". The cocktail I took was:
CoQ10-300mg, alpha-lipoic acid 300mg bid, acetyl-L-carnatine - 500mg to 3000mg, magnesium glycinate 400-800mg, N-acetyl-cysteine 500mg.

I did the amino acids after the vitamin d regimen. And I only took them right before I went for an aquafit workout or other physical activity. I didn't post this cocktail on other threads because it's not really the whole answer at all. I can't emphasize enough how important it is to minimize or cut out completely drugs and alcohol and caffeine, have a healthy diet and then activate the cholines we're eating by exercise in water. We need to get our heart rate up to get our metabolism working but it seems we raise our histamine level too high if we exercise on land.

May I ask, what happened to your buddies who are worse off? Where are they now?

 

[grizzly]

Cort, did the person you're thinking of with the ANS flare have to lie down to deal with the flare or sit up? Cluster headaches have a very distinct pattern where they come on at exactly the same time of day or night, one has to sit up to deal with them, always in the same eye and ends with a tear.

Grizzly, if your headaches are cluster, you may want to avoid MSG and caffeine during the cycle. It's everywhere in processed food, and labeled with alternative names like "malted barley flour". Here's a list: http://www.truthinlabeling.org/hiddensources.html

You mentioned oxygen helps - do you have a mask so that you're breathing it in at your own relaxing pace rather than having it forced into your nostrils?

I just checked out the forums at clusterbuster-they're not the same. Big Pharma's stepped in on the action.

K-Pax - I received a bottle in the "loot bag" at the IACFSME conference. It's manufactured from a Pharma point of view. 160mg of caffeine is a cheap way to increase the absorption of the amino acids, but some have genetics that are sensitive to caffeine. I had to cut it out completely. I had my genes decoded by 23andme.com and found I'm caffeine sensitive. It is a drug. Cardiologist Dr. Steven Sinatra has done a lot of research on amino acids and I've taken his mitochondrial cocktail. You can get the supplements at any health food store or even order them online and avoid the caffeine if you wish. His book is "Metabolic Cardiology". The cocktail I took was:
CoQ10-300mg, alpha-lipoic acid 300mg bid, acetyl-L-carnatine - 500mg to 3000mg, magnesium glycinate 400-800mg, N-acetyl-cysteine 500mg.

I did the amino acids after the vitamin d regimen. And I only took them right before I went for an aquafit workout or other physical activity. I didn't post this cocktail on other threads because it's not really the whole answer at all. I can't emphasize enough how important it is to minimize or cut out completely drugs and alcohol and caffeine, have a healthy diet and then activate the cholines we're eating by exercise in water. We need to get our heart rate up to get our metabolism working but it seems we raise our histamine level too high if we exercise on land.

May I ask, what happened to your buddies who are worse off? Where are they now?

Seem to be that if I catch it soon enough with O2 on mask. 2 min. maybe the issue / attach doesn't manifest. The VA gave me amitriptyline which turned me into a zombie so I quit it. I have sumatriptan upon onset, but I never get to it in time. The bad thing is I'm awake most the night then and feel even worse the next day at work so the issues begins compounding. We know sleep is a very important factor in everything with this. I've tried to eliminate taking so many pills. The VA isn't shy about practicing medicine.

Diet! Yes, this is so important. I'm horrible in this but I've eliminated sugar, caffeine and alcohol. I don't do drugs nor smoke. Drinking is very boring to say the least. I try to drink Pellegrino or some sort of sparkling water with some lime or berries mixed in. Livens it up a little. This is one of the most irritating thing about this disease. I do everything I'm supposed to do diet wise. No drinking or smoking, my weight is maintained yet no matter what feel so horrible the majority of the time.

I've been reading a lot about vitamin D recently and am now at a 500% RDA.

The synergy trial seem to be working for me at the moment. I am more energetic and feel better. I'm interested in result when I quit participating in this trial.

May I ask, what happened to your buddies who are worse off? Where are they now?

Well, most have other issues such as drinking, smoking and otherwise just bad lifestyle choices. We have similar complaints but it's hard to determine what GWI related and what's related to poor heath choices. I.E...a guy who smokes a pack of cigs a day, maybe a burger through a drive through for lunch has other issues to worry about. Really no baseline for him.