SpinachHands
Senior Member
- Messages
- 149
- Location
- United Kingdom
TLDR at the end!
My partner who I care for is fully bedbound with severe long COVID/ME and dysautonomia. Their LC/ME has actually been improving recently, especially after a month on Ketotifen, but the dysautonomia has been worsening.
The past few weeks especially have included some new symptoms out of nowhere, alongside exacerbation of existing symptoms. Particularly:
- what used to be some muscle twitches/spasms when their dysautonomia flares up, now is full body convulsions that look like a seizure (referral to neuro has been made just in case) their HR and BP stay pretty normal during this and they remain conscious
- they have fairly low blood pressure usually (97/70ish) but would get sudden drops every couple of days, and usually 20/30mins with their legs elevated and me massaging/squeezing their legs would improve things. This now happens about 3-4 times a day and is often followed by them falling asleep. Often it doesn't read that their BP has changed much but they'll get faint, cold body parts, slowed breathing, difficulty moving/speaking, extreme pain through their body, etc. Elevating/compressing their legs isn't doing anything, neither is increased salt, fluids, electrolytes, etc.
- they would get some dizziness and nearly always had a mild headache that could sometimes get worse, but now they have very severe bouts of dizziness through the day, and intense migraine type headaches for several hours a day. Their GP doesn't want to prescribe any migraine meds until neuro clears them (which could be a months long wait), they can only take codiene sparingly, and paracetamol/ibuprofen/aspirin each flare up other symptoms of theirs
- what's new is episodes of wooziness that my partner describes as feeling high. They will talk like they're half asleep and often get kind of giggly- they still make sense and say they don't feel tired during it. This usually comes on with the dizziness and/or headaches, and feeling faint/lightheaded
- another new symptoms is weird temperatures, they usually run hot and have problems with overheating, but recently they've been feeling temperature incorrectly. They'll have chills and say they feel cold when they're quite warm to the touch, or say they feel burning hot when they're cool to the touch
Before things escalated, a month or two ago their specialist prescribed fludrocortisone as it really seems from all symptoms that this is a blood pressure/circulation/blood volume/fluids issue. But it caused my partner the most intense pain they've ever felt. We recently retried it at 1/8 of a tablet but the pain was still too much.
Aside from this subset of symptoms, they also get stomach churning/pain when eating, intense adrenaline dumps and sympathetic overload, full body pain, especially joints plus their hands and ankles, just basically a while host of dysautonomia that no doctor has been able to explain or treat yet. They have been bedbound and unable to even sit up, unable to chew solid food, use their phone, or do any kind of activity for seven months now.
I have an urgent appointment with their specialist on Tuesday and she should hopefully be sending recommendations for blood tests to their GP next week. Happy to list all the supplements, vitamins and meds they take too if this gives any indications, but they're on all the usual vits/supps pretty much.
Nothing in their environment/diet/meds/routine has changed recently so I don't know why it's suddenly getting so much worse the past two weeks, even today and yesterday seem much worse.
TLDR: my bedbound partner's dysautonomia is worsening, specifically episodes of migraines, pain, dizziness, seizure-like convulsions, BP drops, and a "high" woozy out-of-it feeling. The past two weeks they have been getting worse daily, but nothing has changed as far as we are aware. Has anyone else had symptoms like this together? What helped? Could something else be wrong? Any reasons it's worsening despite no external changes?
My partner who I care for is fully bedbound with severe long COVID/ME and dysautonomia. Their LC/ME has actually been improving recently, especially after a month on Ketotifen, but the dysautonomia has been worsening.
The past few weeks especially have included some new symptoms out of nowhere, alongside exacerbation of existing symptoms. Particularly:
- what used to be some muscle twitches/spasms when their dysautonomia flares up, now is full body convulsions that look like a seizure (referral to neuro has been made just in case) their HR and BP stay pretty normal during this and they remain conscious
- they have fairly low blood pressure usually (97/70ish) but would get sudden drops every couple of days, and usually 20/30mins with their legs elevated and me massaging/squeezing their legs would improve things. This now happens about 3-4 times a day and is often followed by them falling asleep. Often it doesn't read that their BP has changed much but they'll get faint, cold body parts, slowed breathing, difficulty moving/speaking, extreme pain through their body, etc. Elevating/compressing their legs isn't doing anything, neither is increased salt, fluids, electrolytes, etc.
- they would get some dizziness and nearly always had a mild headache that could sometimes get worse, but now they have very severe bouts of dizziness through the day, and intense migraine type headaches for several hours a day. Their GP doesn't want to prescribe any migraine meds until neuro clears them (which could be a months long wait), they can only take codiene sparingly, and paracetamol/ibuprofen/aspirin each flare up other symptoms of theirs
- what's new is episodes of wooziness that my partner describes as feeling high. They will talk like they're half asleep and often get kind of giggly- they still make sense and say they don't feel tired during it. This usually comes on with the dizziness and/or headaches, and feeling faint/lightheaded
- another new symptoms is weird temperatures, they usually run hot and have problems with overheating, but recently they've been feeling temperature incorrectly. They'll have chills and say they feel cold when they're quite warm to the touch, or say they feel burning hot when they're cool to the touch
Before things escalated, a month or two ago their specialist prescribed fludrocortisone as it really seems from all symptoms that this is a blood pressure/circulation/blood volume/fluids issue. But it caused my partner the most intense pain they've ever felt. We recently retried it at 1/8 of a tablet but the pain was still too much.
Aside from this subset of symptoms, they also get stomach churning/pain when eating, intense adrenaline dumps and sympathetic overload, full body pain, especially joints plus their hands and ankles, just basically a while host of dysautonomia that no doctor has been able to explain or treat yet. They have been bedbound and unable to even sit up, unable to chew solid food, use their phone, or do any kind of activity for seven months now.
I have an urgent appointment with their specialist on Tuesday and she should hopefully be sending recommendations for blood tests to their GP next week. Happy to list all the supplements, vitamins and meds they take too if this gives any indications, but they're on all the usual vits/supps pretty much.
Nothing in their environment/diet/meds/routine has changed recently so I don't know why it's suddenly getting so much worse the past two weeks, even today and yesterday seem much worse.
TLDR: my bedbound partner's dysautonomia is worsening, specifically episodes of migraines, pain, dizziness, seizure-like convulsions, BP drops, and a "high" woozy out-of-it feeling. The past two weeks they have been getting worse daily, but nothing has changed as far as we are aware. Has anyone else had symptoms like this together? What helped? Could something else be wrong? Any reasons it's worsening despite no external changes?
