My partner is "all kinds of messed up", to use the medical terminology, and I feel like there's so many mystery pieces that we're not seeing how they fit together into the bigger picture yet. So I'm going to lay them all out, mostly for myself, but if anyone has insights those are always appreciated.
For context of where we are at: my partner has very severe ME, long COVID, and went from mild to very severe ove the course of last year, finally becoming fully bedbound in December after one too many small crashes and inadequate healthcare. Since then they have been unable to sit up, chew solid food or feed themselves, use their phone or do any kind of activity. In February following a couple of weeks of LDN they developed severe dysautonomia that also has not improved. They also show signs of likely having POTs, potentially hyperadrenergic, and MCAS.
They are currently prescribed: Montelukast (10mg), Ketotifen (1mg in morn, 0.5mg at night), diazepam and lorazepam PRN.
They also take: high strength vitamin D and B12, a B complex, 100mg B1, 25mg B6, 600mg magnesium Glycinate, 100mg COQ-10 with Bioperine, 100mg PharmaGABA, 1280mg Omega 3, 1000mg Taurine, 100mg Lactoferrin, 2000FUs Nattokinase, 100mg Luteolin, 1g sodium chloride tablets 2x daily, 99mg potassium, 250mg ALA, plus promethazine, zopiclone, and melatonin cycled for sleep.
They were taking until recently, but have begun reacting badly to: codeine, paracetamol, Doxylamine Succinate, diphenhydramine, CBD oil, L-theanine, ashwaganhda.
They have been prescribed but have been too unwell to start taking: sodium cromoglicate, valacyclovir, pregabalin
They recently had a bad reaction to a choline supplement that is still ongoing which their specialist thinks could be a mast cell flare. Since looking more into this, here are the puzzle pieces, in no particular order:
1. A month or two ago they began experiencing some seizure-like episodes. It didn't seem like an actual seizure since there was no loss of consciousness or effect on their heart rate, but sure looked like one. It seemed like a worsening if some muscle spasming they've already been experiencing. Their specialist said it sounds like it could be due to poor blood flow to the brain
2. During this MCAS flare, codeine was worsening their symptoms. I found out codeine can increase mast cell activity. Both times they had seizure episodes (before the flare happened) they had taken codeine. Codeine had been fine for them up until about a month before the seizures, at which point occasionally it would make symptoms worse
3. They previously had very bad reactions to fludrocortisone, famotidine, and mirtazapine, all of which caused intense pain, increased hr, and heightened sympathetic nervous system activity. They also tried sumatriptan for their headaches and it intensified the pain tenfold.
4. Their recent blood tests showed inconclusively low cortisol. We had been expecting it to be high due to their frequent sympathetic overactivity, adrenaline dumps/rushes, etc. Their metadrenaline urine test was normal.
5. Several months ago they started getting sudden drops in their BP. The times I could measure it, the numbers were never super low (97/65ish), but they'd get cold extremities, slowed breathing, pounding heart, etc. They now frequently get this in the afternoons, usually after their more calorific meals, and it often ends up making them fall asleep. This can also come with parasympathetic overactivity (extreme crushing fatigue, muscle/joint pain, semi paralysed, churning stomach).
6. When this MCAS flare up started, we originally thought it was PEM, as they had the same leg pain (lactic acid build up feeling), and it would come on a few hours after waking daily. But since there was no exertion to cause it, it's likely MCAS, which apparently can feel similar. They have also been getting PEM during this time though, from activity that previously didn't give them any PEM, and hadn't for months. The MCAS symptoms flaring raised their temperature and HR, which would activate their sympathetic nervous system issues, give them bad adrenaline rushes leading to panic attacks, which would make them crash out and have two days of PEM. They've had similar panic attacks before now that never caused PEM
7. They don't seem to have any of the specific food intolerance issues that most with MCAS do. Their stomach has been getting upset/churning just when eating anything, which has been worsening for months now. We've paused/delayed meds and supplements too to see if any are causing a reaction but nothing we haven't noticed already.
8. Antihistamines are supposed to help with MCAS, particularly flares, but instead they have become unable to take two of their go-to antihistamines for sleep since the flare started. They also tried three different non-drowsy antihistamines, but all seemed to worsen their MCAS symptoms.
9. Their ME has been getting better! Since they crashed and became bedbound, 9 months later they are able to talk more, withstand more without PEM, and generally feels like their ME symptoms have gotten better BUT the better they get with ME, the worse their dysautonomia, POTS, MCAS, etc seems to get. Not even just over time, but day to day even on days where their ME feels better, they have worse episodes of dysautonomia and MCAS symptoms. It's like the more energy their body has, the more energy it can use to fuel these other symptoms? And they have been in bed with nothing to do but monitor their symptoms for 9 months so I trust them to really know the difference between ME symptoms and other symptoms, even distinguishing ME type fatigue, from overactive parasympathetic activity fatigue, from MCAS crashes, or ME pain from other pain, etc. They describe it like a Chinese finger trap. That's the only reason they're still bedbound and unable to tolerate any activity- not because of their ME but because it flares up their dysautonomia and MCAS symptoms. Without those they say they feel like they could get out of bed
10. On days when they have had better sleep, more rest, and they feel their ME is better, their heart can go way high at the slightest stress and cause massive sympathetic overactivity/adrenaline spikes. We don't understand why, surely if they're better rested their heart/body should be able to tolerate stress better?
11. Why was MCAS and dysautonomia not an issue when their ME was much worse at the start of the year?
12. If it's MCAS/POTS causing the episodes of cold/slowed breathing/low BP/paralysis and of overheating/high heart rate/adrenaline what is triggering those two very different episodes to happen? We've not noticed any external causes or triggers that could swing one or the other to happen
So far I've not been able to get answer to any of this from doctors, who just want to do boilerplate treatment for the full picture, and aren't actually looking at these specifics to figure out what the hell is going on. It's so frustrating for my partner when the only answer I really have is "your body is all jumbled and fucked up".
For context of where we are at: my partner has very severe ME, long COVID, and went from mild to very severe ove the course of last year, finally becoming fully bedbound in December after one too many small crashes and inadequate healthcare. Since then they have been unable to sit up, chew solid food or feed themselves, use their phone or do any kind of activity. In February following a couple of weeks of LDN they developed severe dysautonomia that also has not improved. They also show signs of likely having POTs, potentially hyperadrenergic, and MCAS.
They are currently prescribed: Montelukast (10mg), Ketotifen (1mg in morn, 0.5mg at night), diazepam and lorazepam PRN.
They also take: high strength vitamin D and B12, a B complex, 100mg B1, 25mg B6, 600mg magnesium Glycinate, 100mg COQ-10 with Bioperine, 100mg PharmaGABA, 1280mg Omega 3, 1000mg Taurine, 100mg Lactoferrin, 2000FUs Nattokinase, 100mg Luteolin, 1g sodium chloride tablets 2x daily, 99mg potassium, 250mg ALA, plus promethazine, zopiclone, and melatonin cycled for sleep.
They were taking until recently, but have begun reacting badly to: codeine, paracetamol, Doxylamine Succinate, diphenhydramine, CBD oil, L-theanine, ashwaganhda.
They have been prescribed but have been too unwell to start taking: sodium cromoglicate, valacyclovir, pregabalin
They recently had a bad reaction to a choline supplement that is still ongoing which their specialist thinks could be a mast cell flare. Since looking more into this, here are the puzzle pieces, in no particular order:
1. A month or two ago they began experiencing some seizure-like episodes. It didn't seem like an actual seizure since there was no loss of consciousness or effect on their heart rate, but sure looked like one. It seemed like a worsening if some muscle spasming they've already been experiencing. Their specialist said it sounds like it could be due to poor blood flow to the brain
2. During this MCAS flare, codeine was worsening their symptoms. I found out codeine can increase mast cell activity. Both times they had seizure episodes (before the flare happened) they had taken codeine. Codeine had been fine for them up until about a month before the seizures, at which point occasionally it would make symptoms worse
3. They previously had very bad reactions to fludrocortisone, famotidine, and mirtazapine, all of which caused intense pain, increased hr, and heightened sympathetic nervous system activity. They also tried sumatriptan for their headaches and it intensified the pain tenfold.
4. Their recent blood tests showed inconclusively low cortisol. We had been expecting it to be high due to their frequent sympathetic overactivity, adrenaline dumps/rushes, etc. Their metadrenaline urine test was normal.
5. Several months ago they started getting sudden drops in their BP. The times I could measure it, the numbers were never super low (97/65ish), but they'd get cold extremities, slowed breathing, pounding heart, etc. They now frequently get this in the afternoons, usually after their more calorific meals, and it often ends up making them fall asleep. This can also come with parasympathetic overactivity (extreme crushing fatigue, muscle/joint pain, semi paralysed, churning stomach).
6. When this MCAS flare up started, we originally thought it was PEM, as they had the same leg pain (lactic acid build up feeling), and it would come on a few hours after waking daily. But since there was no exertion to cause it, it's likely MCAS, which apparently can feel similar. They have also been getting PEM during this time though, from activity that previously didn't give them any PEM, and hadn't for months. The MCAS symptoms flaring raised their temperature and HR, which would activate their sympathetic nervous system issues, give them bad adrenaline rushes leading to panic attacks, which would make them crash out and have two days of PEM. They've had similar panic attacks before now that never caused PEM
7. They don't seem to have any of the specific food intolerance issues that most with MCAS do. Their stomach has been getting upset/churning just when eating anything, which has been worsening for months now. We've paused/delayed meds and supplements too to see if any are causing a reaction but nothing we haven't noticed already.
8. Antihistamines are supposed to help with MCAS, particularly flares, but instead they have become unable to take two of their go-to antihistamines for sleep since the flare started. They also tried three different non-drowsy antihistamines, but all seemed to worsen their MCAS symptoms.
9. Their ME has been getting better! Since they crashed and became bedbound, 9 months later they are able to talk more, withstand more without PEM, and generally feels like their ME symptoms have gotten better BUT the better they get with ME, the worse their dysautonomia, POTS, MCAS, etc seems to get. Not even just over time, but day to day even on days where their ME feels better, they have worse episodes of dysautonomia and MCAS symptoms. It's like the more energy their body has, the more energy it can use to fuel these other symptoms? And they have been in bed with nothing to do but monitor their symptoms for 9 months so I trust them to really know the difference between ME symptoms and other symptoms, even distinguishing ME type fatigue, from overactive parasympathetic activity fatigue, from MCAS crashes, or ME pain from other pain, etc. They describe it like a Chinese finger trap. That's the only reason they're still bedbound and unable to tolerate any activity- not because of their ME but because it flares up their dysautonomia and MCAS symptoms. Without those they say they feel like they could get out of bed
10. On days when they have had better sleep, more rest, and they feel their ME is better, their heart can go way high at the slightest stress and cause massive sympathetic overactivity/adrenaline spikes. We don't understand why, surely if they're better rested their heart/body should be able to tolerate stress better?
11. Why was MCAS and dysautonomia not an issue when their ME was much worse at the start of the year?
12. If it's MCAS/POTS causing the episodes of cold/slowed breathing/low BP/paralysis and of overheating/high heart rate/adrenaline what is triggering those two very different episodes to happen? We've not noticed any external causes or triggers that could swing one or the other to happen
So far I've not been able to get answer to any of this from doctors, who just want to do boilerplate treatment for the full picture, and aren't actually looking at these specifics to figure out what the hell is going on. It's so frustrating for my partner when the only answer I really have is "your body is all jumbled and fucked up".
