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Woof!

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I can't stop taking them though because I have no thyroid and a non working pancreas. And I've been on them for years.
Martin makes a very good point about drug-induced neuropathies.

In that vein, I, too, take daily thyroid medication, and at one point I was having 3-day migraines every week. Then I discovered that the BRAND of thyroid meds I was taking had cornstarch as an inactive binding ingredient (starches are a major trigger of lots of my symptoms, including migraines, fatigue and Sjogrens Syndrome). I carefully researched all available brands of L-thyroxine until I found one with no starches and no talc as binders (sadly, I couldn't find one I could afford that didn't have food colorings, but I tried).

Once I switched to a no-starch/no-talc formula, the majority of my migraines went away (I now only get one-day migraines, and on average they're twice a month, not every week)... a MAJOR improvement in my life.

Not to say food and/or environmental triggers are causing what you're dealing with, but they may be complicating them, plus eliminating common triggers is one of the few things under your control right now.

Check out my post & poll "What are YOUR triggers?" from last month for some ideas. Since this problem is occurring when you go to bed and you need double doses of antihistamines to sleep, I'd also recommend dustmite-proofing your bedroom (use dustmite/bedbug covers for pillows & mattresses; thoroughly wash any curtains in fragrance-free detergent and stop using terrycloth items & thick blankets - mites love them. If this helps you sleep off some of your buggy episodes and migraines, then get rid of any carpeting in your bedroom (full of mites, guaranteed).

Sometimes getting things under control requires thinking well outside the doctor+drug box!
 

Learner1

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Yes I am actually taking all those apart from ALA because it gives me bad reflux and the cysteine.
Taking them versus taking the amount you need are two different things. Testing to see what your needs are might be useful. I found I need doses many times the DV of certain nutrients.

If ALA makes you feel ill, It could be because you are releasing toxins, like heavy metals? From your mitochondria. When I started on an IV version of ALA, I immediately crashed, because arsenic was released from my mitochondria. It showed up at recognized toxic levels in my blood and the same week, I went to a medical conference where a scientist showed this picture of arsenic in mitochondria - it's the big and little black circles in the photos.

arsenic in mitochondria.png

I think the fact that it's happening when I go to bed is telling. It is almost like it comes on when I relax - like some adrenaline in ME
That could be as well. It could be due to something autoimmune affecting your nervous system, or some mispatch in your sympathetic and parasympathetic nervous systems.

Have you tried phosphatidylserine, like Seriphos or GABA or theanine before bed?
 

judyinthesky

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So this is hard to explain now.
But I have a lot of nerve inflammation in my brain that is somehow related to what I'm dealing with.
Meaning my sympathetic nervous system drives this pseudo allergy response.
In theory the thinking about triggers is good, just that I've always done well with them in the past.
And then: why would it go away again. If it is the medication.

But I'll think some more. The symptom is related to my mood very much
 

judyinthesky

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Taking them versus taking the amount you need are two different things. Testing to see what your needs are might be useful. I found I need doses many times the DV of certain nutrients.

If ALA makes you feel ill, It could be because you are releasing toxins, like heavy metals? From your mitochondria. When I started on an IV version of ALA, I immediately crashed, because arsenic was released from my mitochondria. It showed up at recognized toxic levels in my blood and the same week, I went to a medical conference where a scientist showed this picture of arsenic in mitochondria - it's the big and little black circles in the photos.

View attachment 44365

That could be as well. It could be due to something autoimmune affecting your nervous system, or some mispatch in your sympathetic and parasympathetic nervous systems.

Have you tried phosphatidylserine, like Seriphos or GABA or theanine before bed?
I think that ALA just gives me reflux because it's pretty acidic..
I've got theanine here..
My tactic would have been now to stop all unnecessary drugs to see whether it is some of those
 

Pyrrhus

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Yes I am actually taking all those apart from ALA because it gives me bad reflux
I also got stomach acid and reflux a few minutes after taking Alpha-Lipoic-Acid (ALA), before it had had a chance to be absorbed. Taking it with food helps, although it is probably better absorbed on an empty stomach. (But I no longer take ALA.)
 

judyinthesky

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I also got stomach acid and reflux a few minutes after taking Alpha-Lipoic-Acid (ALA), before it had had a chance to be absorbed. Taking it with food helps, although it is probably better absorbed on an empty stomach. (But I no longer take ALA.)
I have so much digestive troubles with my pancreas illness unfortunately it isn't possible. I've tried this years ago for my burning mouth syndrome.
 

Learner1

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I have so much digestive troubles with my pancreas illness unfortunately it isn't possible. I've tried this years ago for my burning mouth syndrome.
I'm not sure what pancreas illness you're referring to. My sister had acute pancreatitis, brought on by a wicked mix of pharmaceuticals prescribed by her doctors. I dug into the mechanics of it and found that the big driver was severe oxidative stress. So, I would wonder if a healthy mix of antioxidants in the antioxidant network, would be helpful. ALA is the only antioxidant capable of recycling both water and fat soluble antioxidants, but taking it without the other antioxidants might be problematic. Additionally, if one's pancreas is not working properly, ingesting anything, including water can be a problem. Wondering also if proteolic or digestive enzymes would be helpful?
 

judyinthesky

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I'm not sure what pancreas illness you're referring to. My sister had acute pancreatitis, brought on by a wicked mix of pharmaceuticals prescribed by her doctors. I dug into the mechanics of it and found that the big driver was severe oxidative stress. So, I would wonder if a healthy mix of antioxidants in the antioxidant network, would be helpful. ALA is the only antioxidant capable of recycling both water and fat soluble antioxidants, but taking it without the other antioxidants might be problematic. Additionally, if one's pancreas is not working properly, ingesting anything, including water can be a problem. Wondering also if proteolic or digestive enzymes would be helpful?
Severe idiopathic pancreas insufficiency.
Am on lots of Creon to control the pain
 

judyinthesky

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Yikes! Idiopathic is not a helpful medical word....Is there a cause for this situation?
I have not any clue.
All I know is that I had a thyroidectomy and five years later my pancreas suddenly stopped working after 3 weeks of nausea, then the next day my nervous system changed to continuous fight and flight.

I have had MRI of pancreas, CT of abdomen, and an EUS, all are crystal clear so that's why I say idiopathic. There's also no autoimmune disorder behind it. No pancreatitis in the past. Unfortunately there are a lot of us. Maybe not as severe.
 

Learner1

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I have not any clue.
All I know is that I had a thyroidectomy and five years later my pancreas suddenly stopped working after 3 weeks of nausea, then the next day my nervous system changed to continuous fight and flight.

I have had MRI of pancreas, CT of abdomen, and an EUS, all are crystal clear so that's why I say idiopathic. There's also no autoimmune disorder behind it. No pancreatitis in the past. Unfortunately there are a lot of us. Maybe not as severe.
So, oxidative stress seemed to be a big driver of pancreatitis. Imaging wouldn't show it. Wonder if IV glutathione might be helpful for you?
 

judyinthesky

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So, oxidative stress seemed to be a big driver of pancreatitis. Imaging wouldn't show it. Wonder if IV glutathione might be helpful for you?
I would say most pancreatitis would show on the imaging I did? Why wouldn't it?
I'm also absolutely fine after taking Creon, no pain anymore.
But I've heard that in some cases you could have other drivers such as mast cells, or very low grade inflammation wouldn't show.

IV glutathione because of?
 

Pyrrhus

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I would say most pancreatitis would show on the imaging I did?
My doctor thinks I have low-level pancreatitis, based on my slightly-elevated lipase levels.
(Since I have no pain, she didn't think imaging would show anything.)

Elevated lipase can occasionally be due to gastritis or liver issues, although pancreatitis is the most common cause.

For what it's worth, Dr. Chia said that low-level pancreatitis and low-level thyroiditis is very common with enteroviral infections, as enteroviruses are often seen in pancreas and thyroid biopsies.
 

judyinthesky

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My doctor thinks I have low-level pancreatitis, based on my slightly-elevated lipase levels.
(Since I have no pain, she didn't think imaging would show anything.)

Elevated lipase can occasionally be due to gastritis or liver issues, although pancreatitis is the most common cause.

For what it's worth, Dr. Chia said that low-level pancreatitis and low-level thyroiditis is very common with enteroviral infections, as enteroviruses are often seen in pancreas and thyroid biopsies.
I have no thyroid
My lipase is normal but my amylase always a bit higher, but there's also a thing called macroamylase
I feel my pancreas trouble is related to nerves. Just my gut feeling.
 

judyinthesky

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@Learner1 what doesn't make sense to me though is that my pancreas trouble and worsening of ME don't seem to be related.
While I feel it has lead to my entry into ME world together with hyperthyroidism and other stress, I don't feel it's responsible since I am free of cramps and symptoms. But what do I know.
 

judyinthesky

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Or perhaps you might be taking more meds than your body can take. Have you tried applying ice or some moisturizers for immediate relief?
I try to really be careful with too many supplements... not sure
My burning mouth syndrome flared at the same time again
Ice works but I would have to apply it everywhere as it wanders
Like under my scalp
Eyelids etc