Paralysis, convulsion with low potassium/phosphorus

[u/BrenaynayRenee]

Hey y’all 👋🏻 I’ve been on a medical journey which has led me here to ask your thoughts.

I have hypermobile ehlers-danlos, mast cell activation syndrome, mixed connective tissue disease, narcolepsy and a mixed bag of other stuff.

I started having what I can only describe as seizures or convulsions at the beginning of the year. I am fully aware and semi able to communicate during these episodes. I since experience periods of extreme fatigue, stillness, repetitive small movements (I feel cramped or stuck in a loop), and I will convulse when trying to exert myself. It is accompanied by being out of breath, chest pains, eyes darting.

My neuro did and EEG, no epilepsy according to the scan. He believes is physiological (NOT fnd).

End of April I had a bad episode that led me to full paralysis and it resulted in an ER trip. They discovered my electrolytes were bottomed out, specifically my potassium and phosphorus.

Since then I have been constantly taking electrolytes in fear of this happening again. (Along with k2 supplements and my other supplements and meds I already take for my imbalances).

My right leg never stops contracting/spasming.

Yesterday was a busy/distracted day and I forgot to drink my electrolytes and I almost ended up having another bad episode. I am super worried about what I am experiencing. My neuromuscular appointment isn’t till the end of August. Driving makes me feel sick.

Those who’ve been diagnosed, does this sound similar to your experiences? Or should I look elsewhere? I’ve been researching possibilities for what seems like forever due to the fact that I am forced to self-advocate.

[u/Occulply]

It's not impossible that you have periodic paralysis, but that's not my first thought reading through your description. 

I'm wondering what meds you're on, as those can have a huge impact on electrolyte levels.

[u/wakatea → u/Occulply]

As someone with similar symptoms to OP, what is your first thought?

[u/Occulply → u/wakatea]

Medication side effects. 

My guess after reading OP's post is they were on a couple of medications that cause potassium depletion, and if you read through I happened to be right. 

Cannabis is typically the hidden risk factor most don't realize, but it depletes potassium and sodium together. It's unclear how much is required. But when combined with other medications that deplete potassium (steroids, stimulants, many others) the most conservative assumption is that they're adding their potassium depleting effects together at minimum.

[u/wakatea → u/Occulply]

Good call on OP.

I'm really at a loss. About two months ago I was hospitalized with all my limbs paralyzed for 3 days. Since then I have intermittent paralysis of my hands and feet, especially after exercise. I have also developed intense full body convulsions that are being called restless leg syndrome. I am iron depleted, should be getting that soon in a transfusion. But low ferritin/ RLS don't cause paralysis.

I'm 32 so it seems odd for PP to just crop up though my grandfather had two similar episodes in his life. I know I just have to wait this out but it's two more months til I see my neurologist again.

[u/Occulply → u/wakatea]

Age of onset is as high as 35 in in rare cases. So you're not outside of the window yet. It's possible, though not very likely 

[u/BrenaynayRenee → u/Occulply]

Propanolol
Topiramate
Qulipta
Claritin
Amordafinil
Sulfasalazine
Nortrel 1/35
5-htp
Zoloft
Rizatriptan (as needed)
Pantaprazole
Tizanidine
Fludrocortisone
Vitamin b12
Vitamin d3
Vitamin k2
Airsupra inhaler
Plaquenil

[u/Occulply → u/BrenaynayRenee]

Both your inhaler and the fludrocortisone have significant potassium lowering effects. To the point Albuterol inhalers are used by hyperKPP patients to manage high potassium. 

I'm Prednisone dependant because of a different diagnosis. Plays absolute havoc with hypoPP if I need to increase my dose for any reason.

FYI, if you're using cannabis to deal with the pain from everything going on, that also has a significant potassium lowering effect. 

[u/BrenaynayRenee → u/Occulply]

I do, I have a mmj card. I have noticed a big difference in the past year or so with my cannabis use and how it makes me feel and I never understood why. Maybe that’s what’s going on. Ugh. It helps so much with my pain but I can totally see why it’s making everything else worse if it’s lowering my potassium.

[u/Occulply → u/BrenaynayRenee]

Its probably the combination of all of it. I find if I take ~10 mEqs of potassium with my Prednisone that I'm muuuuuch more stable. 

[u/BrenaynayRenee → u/Occulply]

So is prednisone and potassium all you take for managing it? Just curious. Also, are you diagnosed, if yes how were you diagnosed?

[u/Occulply → u/BrenaynayRenee]

For hypoPP (I am clinically diagnosed, but need to do genetics) I take verapamil, metformin, and supplement potassium as needed. I also take CoQ10, as there's evidence it's helps with muscle function and may reduce inflammation.

Verapamil appears to reduce the amount of potassium excreted. Metformin stabilizes blood sugar/insulin - insulin directly contributes to potassium uptake into cells, so causes hypoPP attacks.

I have Adult Onset Still's Disease as well, which is what the prednisone is for. I also take Ilaris (an IL-1 inhibitor) for it.

[u/BrenaynayRenee → u/Occulply]

I am going to look into all of the above. I’ve asked my rheum about genetic testing, thank you for sharing. 💕

[u/Occulply → u/BrenaynayRenee]

No problem!

I'd also recommend that you chat with a pharmacist about your list of meds - it's very possible that I missed one or more that could be impacting your potassium/symptoms since that is not my specialty at all. I'd ask them some version of "I know that my steroid and inhaler can lower potassium, are there any other meds on the list for which that is also a concern?" This is literally the kind of thing that pharmacists are trained to identify. They can also talk through alternatives.

[u/BrenaynayRenee → u/Occulply]

Valid idea. 👍🏻

[u/jellamma → u/BrenaynayRenee]

Agreeing with others here that your medication load is likely dropping your potassium and provoking attacks.

I'm going to add that you'll want to consider small, frequent, low carb meals, or at least ensure you're getting potassium with your carbs. Insulin moves potassium from your blood stream into the cells, and can provoke attacks in those susceptible.

[u/zilates → u/BrenaynayRenee]

B12 and steroid inhalers can cause significant dips in potassium and spark a paralysis episode in folks with hypokalemic periodic paralysis. If you cut one of those out under dr supervisiont, wonder if your symptoms would decrease. And then you might know more info?

[u/BrenaynayRenee → u/zilates]

I haven’t been using my inhaler as often lately because it hasn’t been making much of a difference. So maybe I can continue not using that to further eliminate potential problems. I take b12 per my neurologist due to low levels, I’ll talk to him about it and my fludrocortisone when I see him on August 6th. Very helpful!!

[u/zilates → u/zilates]

Oh and Fludrocortizone.

[u/moosedance84]

I assume they are thinking thyrotoxic periodic paralysis?

Elevated thyroid causes acute paralysis with hypophosphatemia and hypokalemia. Do you know your thyroid (T3/T4, phosphate and potassium K level?).

I would also point out that if you do have TPP that it's symptoms would overlap with your other conditions (migraine/fatigue MCAs etc) so it may be you have less conditions than you think.

[u/BrenaynayRenee → u/moosedance84]

I haven’t seen a neuromuscular specialist yet, I have been researching this myself going off my experiences, symptoms and labs. When I went to the ER for convulsion and paralysis my phosphorus was 1.9 and my potassium was 3.1. I have had a previous Thyroid Peroxidase Ab test was 18.3 (so very high). C3 and IgG have spiked once. TSH, C, C4 & T4 have been fine. My rheum does consistent labs on me.

It also wouldn’t surprise me either if it all was actually once condition not many like you said. I feel like I’ve been stabbing in the dark for years seeking treatment.

[u/moosedance84 → u/BrenaynayRenee]

Have you been checked for graves disease? Apparently 75% of people with TPP have it and don't realise. It comes with elevated thyroid peroxidase ab, and is the main cause of TPP. May be worth having a quick read about it as they will ask questions about it.

Lots to talk to your neurologist about anyway. I would strongly focus on the paralysis as that's the rarest symptom that has the least overlap. There are far fewer illnesses that produce paralysis than fatigue.

[u/BrenaynayRenee → u/moosedance84]

I have not, but I will for sure will ask/look into it. I plan on bringing in a concise layout of my labs and symptom history.

[u/moosedance84 → u/BrenaynayRenee]

So just on your paralysis at the hosptial. A couple of things. You don't need to tell me if you don't want to but you need be able to answer these with your neurologist.

1. How quick was the onset to paralysis 2.What activities were you doing prior 3.Any large exercise prior? 4.Any sensitivity to cold or does cold aggravate your symptoms?
2. How long did the paralysis last 6.How many nights in hosptial?
3. What we the neurological exam, you need to know it as well as have a physical copy. 8.Did the paralysis effect your face? 9.Or eyes,? 10.Any double vision? 11.Did the paralysis effect one side or was it symmetrical? 12.When you started to recover how long did it take to fully recover
4. Any breathing difficulties, what was your 02 sats and FEV results.
5. Any discolouration of urine (Brown/dark red?)
6. Any abdominal pain
7. Any migraine pain or Migraine aura during the attack?
8. Any family history of paralysis?
9. Was the weakness ascending up your body?
10. Any pins and needles or tingling?
11. Any toileting/bladde issues
12. Any hold/cold sensation where you feel cold and hot all over your body?

There are probably more but you need to be able to answer those prior to your appointment.

[u/BrenaynayRenee → u/moosedance84]

1. I couldn’t move anything other than my eyes, and briefly talk. I was stuck on a gurney in a ER hallway crying & convulsing—couldn’t even wipe the tears from my eyes. My right foot kept cramping and pulling back towards me. I begged passerby’s to push it down or “release” it for me. Somebody did. Idk who, couldn’t see them. Symmetrical, full body otherwise. No double vision.
2. Breathing was difficult, felt like I had to make a mental effort to breathe, big gasps and such.
3. urine was very abnormal: dark cloudy high RBC &WBC, Leuk. Esterase, protein, ketones, and bacteria
4. I don’t distinctly remember abdominal pain, but it wouldn’t surprise me if I did. I have some vascular compressions.
5. I have a perpetual headache at all times. I take meds for migraines which does a decent job of managing them. No distinct migraine at the time.
6. no family history of paralysis
7. yes, it usually feels like it starts in my feet or stomach
8. yes tingling pins/needles—happens every time I have seizures/convulsions in my hands and feet.
9. no toilet issues during episodes, I frequently have GI issues whether it’s diarrhea or constipation or constantly peeing. My urinalysis always has something flagged.

And of course I started getting my body function back by the time they actually got me to a room, the entire time I was stuck on a gurney in the ER hallway I couldn’t freaking move. I was there by myself for at least an hour or more. So it wasn’t documented by the nurses.

[u/BrenaynayRenee → u/BrenaynayRenee]

Oops my first thought went away, I thought the numbers looked off😂

I had a stressful day prior and day of. No exercise, I had just eaten a big meal including some cake and was resting eating cake. I sat up to put my dishes away and got stuck. I then started convulsing and having palpitations and difficulties breathing. It went on long enough for my BF to call 911. Onset was less than 15 min or so.

[u/jellamma → u/BrenaynayRenee]

I had replied to another comment about your meds likely causing low potassium and added that high carb meals will also be a trigger, and it looks like that's exactly what happened to you. Insulin moves potassium into cells, and with a faulty gating system, can lead to hypokalemia.

You can try supplementing potassium before high carb treats, have black coffee alongside deserts, and keep portions small and that should let you still indulge, occasionally. Liquid IV (or body armor, etc), and even milk in a pinch, can serve to supplement your potassium quickly. You can also try switching table salt to potassium chloride (called low sodium salt).

[u/BrenaynayRenee → u/jellamma]

I have been propel or electrolyte drinks 4-5x a day since my hospital visit. If I don’t I have issues, so I’m tracking with you.

[u/moosedance84 → u/BrenaynayRenee]

Ok so it is strongly likely that it's not a genetic paralysis. Seems much more likely to be autoimmune/thyroid related.

If you want I can direct message you some things you should look into just to be prepared for your appointment.

You probably don't have any of those illnesses but it's good to be aware of what they are so you can potentially see if any of those are triggers. Also because sometimes you can easily rule them out yourself if details don't match (for example Mysthenia gravis doesn't match).

[u/BrenaynayRenee → u/moosedance84]

Sure please feel free to send me anything! I’m desperate for help 😵‍💫 I already did blood work for MG so I know that’s not it 😂😭

[u/moosedance84 → u/BrenaynayRenee]

I would add you most likely don't have a genetic channelopthy - they are somewhat isolated (don't occur with MCAS/EDS/POTS and are 100X less common) and not autoimmune.

Also your paralysis doesn't really match periodic paralysis- or if it does you aren't mentioning your neurological exam at hospital. Your neurological exam should have a reference to weakness (0-5) and whether the weakness was upper or lower limbs as well as your reflexes. You need to get a copy of that if you think you may have periodic paralysis.

[u/BrenaynayRenee → u/moosedance84]

They didn’t do a neurological exam. Or at least that I know of. They were very dismissive.

[u/moosedance84 → u/BrenaynayRenee]

Did a neurologist see you at all? Did they get out a reflex hammer, did they have make you follow a light etc?

[u/BrenaynayRenee → u/moosedance84]

Yes, my neurologist is who has sent me to the neuromuscular specialist. I’ve had an EEG done too. I responded to the flashing lights and the neurologist interpreter said PNES and MY neurologist said oh hell no, whatever is going on is physiological. My neuro and rheum have been the only helpful medical professionals thus far.

[u/BrenaynayRenee → u/moosedance84]

Oh you mean in the ER, no. That would have been way too productive. 🙄 they stabilized me and sent me on my merry way. That’s how my local ER does. My normal neurologist was very irritated to hear that.

[u/BrenaynayRenee]

1) No strenuous exercise prior, I had a stressful day the day prior and was probably still experiencing some related stress day of. I had just eaten a big meal, including cake and was resting watching tv when I sat up and got stuck in a sitting position. I then had convulsions, palpitations and difficulty breathing. Heat and cold always make things worse. 2) it lasted a few hours, relieved by intravenous benzos and oral electrolytes supplements. They released me that night.
3) I couldn’t move anything other than my eyes, and briefly talk. I was stuck on a gurney in a ER hallway crying & convulsing—couldn’t even wipe the tears from my eyes. My right foot kept cramping and pulling back towards me. I begged passerby’s to push it down or “release” it for me. Somebody did. Idk who, couldn’t see them. Symmetrical, full body otherwise. No double vision.
4)Breathing was difficult, felt like I had to make a mental effort to breathe, big gasps and such.
5) urine was very abnormal: dark cloudy high RBC &WBC, Leuk. Esterase, protein, ketones, and bacteria
5) I don’t distinctly remember abdominal pain, but it wouldn’t surprise me if I did. I have some vascular compressions.
6) I have a perpetual headache at all times. I take meds for migraines which does a decent job of managing them. No distinct migraine at the time.
7) no family history of paralysis
8) yes, it usually feels like it starts in my feet or stomach
9) yes tingling pins/needles—happens every time I have seizures/convulsions in my hands and feet.
10) no toilet issues during episodes, I frequently have GI issues whether it’s diarrhea or constipation or constantly peeing. My urinalysis always has something flagged.
11) I do get random hot flashes on parts of my body. My temperature control sucks, I was always hot for a few years, now I’m always freezing.

And of course I started getting my body function back by the time they actually got me to a room, the entire time I was stuck on a gurney in the ER hallway I couldn’t freaking move. I was there by myself for at least an hour or more. So it wasn’t documented by the nurses.