Temporary paralysis I need your Insights

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Just had very interesting reply from someone in a Periodic Paralysis group who had a CFS and POTS diagnosis and has massively improved once she heard about PP issues, increased potassium, reduced salt and carbs.

It’s definitely worth people on here being aware that symptoms like brainfog overlap with PP.
Hi Jenny any better luck finding your answers. Today is the first day that I have seen this thread. I am diagnosed, with andersen Tawil syndrome and I am symptomatic with the normal range of serum potassium. My range of symptoms include hyperandernergic issues.. high blood pressure, episodes of extreme muscle weakness triggered by carbohydrate or high sodium intake. Sleep disruption, chronic pain, obesity, chronic fatigue not a diagnosis of cfs Me in particular. From what I have read your symptoms sound so very much like the symptoms I get. I am symptomatic even while my serum levels for potassium is in the normal for the average guy range of high threes to low mid fives. It took me several years of adjusting medications, tweeking diet etc etc to discover my best normal is 5.6 mmol. I also have lax joints which are typical with Andersen Tawil syndrome as well as facial features and minor defects of toes fingers etc that also are known to happen with ATS. My miracle is low carb diet, high potassium foods, high protein and fats. I also supplement quite a large amount of potassium along with medications to avoid it dropping lower. I also have interactions with anesthesia and sensory overload. Lidocaine or novocaine doesn't work well for me, I tend to wake up during surgery. I just received my data from Genes for good and I have numerous sodium and calcium channel mutations. I do not have the first mutation discovered to cause ats in the kcnj2 gene. I do have other potassium channel mutations and a plethora of collagen mutations and more. It really isn't surprising to me as my family tree is kind of bottlenecked.
 
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Sorry @kattsqueen I didn’t get an alert.

I’m mostly on the Other Forum these days but since this is such a long thread and people here were so helpful I thought I should give the latest update.

I’m getting over a bad crash so can’t write (or read) much right now but it seems like I’ve got to a genetic explanation for Atypical Periodic Paralysis. I’ve had feedback from a relevant genetics expert who thinks the mutation I have is a good candidate for my symptoms (but I haven’t yet had a follow up appointment to see what a medical doctor thinks of it).

It’s on MT-ATP6 so it is actually a mitochondrial defect (OXPHOS problem) rather than the more expected ion channel mutations. But ATP also regulates the ion channels so if you have problems with low ATP a possible downstream effect is temporary weakness which presents as Periodic Paralysis. Obviously it is also a good (partial?) explanation for ME symptoms too.

I really feel like this issue could be relevant to other people with ME who get these paralysis episodes (eg @taniaaust1 I wanted you to be aware of this because we have quite similar expressions of symptoms). It hasn’t been well studied and would seem to be rare, but this issue has been found with MT-ATP6 and MT-ATP8 variants.

If I understand this correctly, I’ve been approaching this from the wrong angle by trying to add electrolytes to correct an imbalance. It would appear that a better approach is diuretics to lose some water and electrolytes. Families with these mutations responded really well to acetazolamide (which is also treatment for more conventional Periodic Paralysis).

I can add more info when I’m doing a bit better cognitively (references etc)

Thanks to everyone for your input especially @duncan @anciendaze . I wouldn’t have got this far without it.
 
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Would anyone happen to know why nortriptyline caused periodic paralysis for me, every time I stood up? It was a feeling of every cell being completely drained of energy but it would let up after about 30 seconds and I could just about move again. However my limbs always felt incredibly heavy as well.
I've been off the drug for 3 years and it's still happening to me, just not as extreme but enough to be completely debilitating. Trying to understand why
 

Starsister

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Would anyone happen to know why nortriptyline caused periodic paralysis for me, every time I stood up? It was a feeling of every cell being completely drained of energy but it would let up after about 30 seconds and I could just about move again. However my limbs always felt incredibly heavy as well.
I've been off the drug for 3 years and it's still happening to me, just not as extreme but enough to be completely debilitating. Trying to understand why
I’ll be interested in replies also. I wasn’t on nortryptolin but had similar experience twice. Got up and was like all energy and strength drained from my arms starting at my shoulders. Was unable to move arms, like battery tan out of juice.. but only in arms. Noticed extreme rapid heart beat and chest tightness with it. Laid down and better in half hour but very frightening.
 
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I had a high potassium-sodium ratio on a hair mineral analysis and a recent blood test found potassium slightly above normal.

Also, I'm hypothyroid and taking thyroid greatly increased the strength and frequency of periodic paralysis. I avoided it for years because it made me feel worse somehow. Thyrotoxic periodic paralysis is caused by hyperkalemia.

These three things point toward me having hyperkalemic periodic paralysis. However, I have hyperreflexia during paralysis, and when I had an EKG during paralysis in the past, it was apparently normal, which would seem to rule out hyperkalemia.

There's no sign of anything being wrong with me besides in the CNS. Can channelopathy be present only in the CNS? If not, then it's some other problem.

For example, hypothyroidism increases lactate production, which can damage cells. I was hypothyroid since I was a kid. However, if there are already issues with orthostatic intolerance, like I had, thyroid may make things worse by demanding more nutrients of an insufficient circulatory system.

Maintaining blood volume and circulation to the head is important. I recently got tired of hauling and drinking so much fluid and having to urinate, so I stopped that, and now I experience respiratory and cardiac dysautonomia during PEM that might end up killing me. Avoiding PEM wasn't worth the cost of doing additional damage.
 

Inara

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In my case, if I am completely paralyzed, I can't move my body. I would have to pee in my bed...luckily it never happened. 😅 I can open my eyes a bit and briefly, and I can say single words with a lot of will. My consciousness is not affected, but it seems certain brain areas are "on pause". I can also breathe normally (unless I put lidocain into my throat, haha). It's temporary because (if I don't take potassium) it lasts some hours (3 or more), and if I take potassium it resolves to weakness during 5min. I.e. I am not paralyzed due to structural changes, but due to ion movements.

In my case, single muscles can weaken or paralyze (abductors, gluteus, hip muscles), affecting single extremeties (especially the legs) leading to gait problems. I think this is called paresis? These cannot always be resolved with potassium, but a certain med helps (it's a potassium sparing diuretic).
 

Pyrrhus

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Could you explain what is complete paralysis for a layperson? How is it different from partial or temporary paralysis?

Thank you. :)
I apologize, I didn't mean to imply that "complete paralysis" was a technical term.

I just used the word "complete" in order to differentiate paralysis from the sort of extreme weakness that can prevent you from moving.

I have had episodes of extreme weakness where I was too weak to lift my limbs, but I wasn't "completely" paralyzed.

Hope this is clear.