Has anyone had a change in their symptom presentation? From 2014-2023 I had similar symptoms
-heat intolerance
-exercise intolerance
-compression helped (suggests vasodilation)
-transient tingling and nerve sensations (tingling only happens like once every 2 months. I still haven’t figured out what triggers it)
-nausea and weakness (seemed to come about after eating)
-nausea
-chest pain
-shortness of breath
-feel like cant breathe on my back (suggests construction?)
-burning legs feeling
-itchy chest feeling
-weak heavy legs
-waking up 30 mins after falling asleep- feeling like I’m going to pass out.
-always feeling like I was going to pass out
-I did remark in my symptoms journal that there were instances of higher heart rate and higher glucose than what it normal for me.
*.25-0.5mg Ativan would damper down the chest pain. *during this time I was on diltiazem and nitro patches. *in my sxs journal I remark a few times that I added an extra nitro patch and it seemed to help.
*also note I had NO idea back then that it was ME/CFS. I was told it was a heart condition and many other ppl in my heart groups ended up in the proverbial “penalty box” for overdoing it.
(others but these are of note)
****The ONLY things that would help my chest pains were Ativan and alcohol (never on the same day).
I went on Imdur and amlodipine in 2020 after the cath lab revealed coronary artery spasms and ENDOTHELIAL DYSFUNCTION due to my LAD spasming with acetylcholine. I also had an ENDOPAT down that put my endothelial function in the red. Every time I do those nitric oxide strips I’m low.
I also added in a protein shake with BCAA’s annd some omega’s. After about 6 months my symptoms improved enough that I could get out walking again and as long as I did some pacing I was doing pretty great. *In May 2020 I did notice some blood pooling in my legs. *purple legs with white splotches.
-when I’d try to take supplements like magnesium or zinc it would feel like my heart was stalling.
Jan 2020 - had 4 hours of autonomic testing via the Mayo protocol and there was “no indication of autonomic dysfunction or SFN” 🙄
Cut to Sept 2022, symptoms started to creep back in slowly (had had covid and was devastated by the a sudden diagnosis and subsequent loss of a family member-I didn’t eat or sleep properly for months as I was primarily caregiver and he was my world) and by Feb/March I was a mess again. All the above symptoms came back and I struggled. In mid April, I thought I was reacting to my Imdur as about 60 mins after taking it my heart rate would increase and I’d feel doom (some of this could have been psychosomatic/anxiety/panic but then I had a few episodes of feeling like my throat was closing over when I lied on my back.
I abruptly stopped it. A few days later I had a CT scan with contrast (to assess a congenital heart issue to prep for a surgery) and that night…and from then on I’ve had …
-decrease in chest pain (unsure if it’s just because I’m not doing anything?) (vasodilation?)
-not as much SOB (vasodilation?)
-inability to tolerate ANY of my compression wear (??)
-lacy skin discoloration (livido) on my arms and trunk when I stand or sit (vasoconstriction?)
-I’ve noticed I have some OI when I’m dehydrated but otherwise don’t meet the criteria (vasodilation)
-jerking limbs constantly all day. Myoclonus I guess is the word but it’s everywhere- limbs, trunk, neck, face/head. Was horrible the night I had the Ct scan
-my legs are now very sensitive to touch, like I’ll reflex pretty strongly if something touches me that I’m not expecting or if I step on something, etc.
-internal vibrations in the morning.
-waking early. Waking often
-severe sun intolerance (weak, chest pain, shortness of breath)
-weak heavy legs 24/7 and inability to walk more than 10 mins at a time.
-one instance of hives and photophobia last month before my period.
-scents now bother me with sore throat and dry eyes.
****** severe mental health issues. And I mean SEVERE that came out out nowhere after stopping the Imdur and having that CT. (Anxiety, depression, SI, terror, crying all the time, first I couldnt cry for 3 weeks now I just cry all the time).
*I started tapering the 0.5mg of Ativan I was on end of April because at the time, So I went from a PRN type of deal -every other night to every day divided doses. I didn’t know what was happening to me and a friend said it sounded like some kind of benzo w/d when I stopped the indur. The taper has been very slow. From the one dose of .5mg to .3mg divided into 3 doses.
*Ive read high NO can cause psychoactive drugs to be more potent so maybe that’s why it felt like huge hit when I stopped the Imdur and maybe that’s why I’m feeling overdosed with such a small about now? But I’d that’s the case…why the added vasodilation - unless it’s histamine as Imdur is also a functional antihistamine?
I can’t tell if my picture has changed completely and I’ve gone from needing additional vasodilation to now having too much? I’ve read that could be the reason why my Ativan now causes scary shallow breathing and waking with coughing fit). I noticed on the Imdur monograph that it’s also a functional acetylcholine, serotonin and histamine antagonist - which kind of hits many of the theories about ME/CFS - well the acetylcholine, vasodilation and histamine theories anyways.
I would hop back in and try the Imdur but I’m so scared. I’m bed bound as it is and not sleeping and scared I’m going to die so I’m just not in a good space for trying things.
Can anyone smarter than me comment on this, help me hash it out, or relate to it in any way?
-heat intolerance
-exercise intolerance
-compression helped (suggests vasodilation)
-transient tingling and nerve sensations (tingling only happens like once every 2 months. I still haven’t figured out what triggers it)
-nausea and weakness (seemed to come about after eating)
-nausea
-chest pain
-shortness of breath
-feel like cant breathe on my back (suggests construction?)
-burning legs feeling
-itchy chest feeling
-weak heavy legs
-waking up 30 mins after falling asleep- feeling like I’m going to pass out.
-always feeling like I was going to pass out
-I did remark in my symptoms journal that there were instances of higher heart rate and higher glucose than what it normal for me.
*.25-0.5mg Ativan would damper down the chest pain. *during this time I was on diltiazem and nitro patches. *in my sxs journal I remark a few times that I added an extra nitro patch and it seemed to help.
*also note I had NO idea back then that it was ME/CFS. I was told it was a heart condition and many other ppl in my heart groups ended up in the proverbial “penalty box” for overdoing it.
(others but these are of note)
****The ONLY things that would help my chest pains were Ativan and alcohol (never on the same day).
I went on Imdur and amlodipine in 2020 after the cath lab revealed coronary artery spasms and ENDOTHELIAL DYSFUNCTION due to my LAD spasming with acetylcholine. I also had an ENDOPAT down that put my endothelial function in the red. Every time I do those nitric oxide strips I’m low.
I also added in a protein shake with BCAA’s annd some omega’s. After about 6 months my symptoms improved enough that I could get out walking again and as long as I did some pacing I was doing pretty great. *In May 2020 I did notice some blood pooling in my legs. *purple legs with white splotches.
-when I’d try to take supplements like magnesium or zinc it would feel like my heart was stalling.
Jan 2020 - had 4 hours of autonomic testing via the Mayo protocol and there was “no indication of autonomic dysfunction or SFN” 🙄
Cut to Sept 2022, symptoms started to creep back in slowly (had had covid and was devastated by the a sudden diagnosis and subsequent loss of a family member-I didn’t eat or sleep properly for months as I was primarily caregiver and he was my world) and by Feb/March I was a mess again. All the above symptoms came back and I struggled. In mid April, I thought I was reacting to my Imdur as about 60 mins after taking it my heart rate would increase and I’d feel doom (some of this could have been psychosomatic/anxiety/panic but then I had a few episodes of feeling like my throat was closing over when I lied on my back.
I abruptly stopped it. A few days later I had a CT scan with contrast (to assess a congenital heart issue to prep for a surgery) and that night…and from then on I’ve had …
-decrease in chest pain (unsure if it’s just because I’m not doing anything?) (vasodilation?)
-not as much SOB (vasodilation?)
-inability to tolerate ANY of my compression wear (??)
-lacy skin discoloration (livido) on my arms and trunk when I stand or sit (vasoconstriction?)
-I’ve noticed I have some OI when I’m dehydrated but otherwise don’t meet the criteria (vasodilation)
-jerking limbs constantly all day. Myoclonus I guess is the word but it’s everywhere- limbs, trunk, neck, face/head. Was horrible the night I had the Ct scan
-my legs are now very sensitive to touch, like I’ll reflex pretty strongly if something touches me that I’m not expecting or if I step on something, etc.
-internal vibrations in the morning.
-waking early. Waking often
-severe sun intolerance (weak, chest pain, shortness of breath)
-weak heavy legs 24/7 and inability to walk more than 10 mins at a time.
-one instance of hives and photophobia last month before my period.
-scents now bother me with sore throat and dry eyes.
****** severe mental health issues. And I mean SEVERE that came out out nowhere after stopping the Imdur and having that CT. (Anxiety, depression, SI, terror, crying all the time, first I couldnt cry for 3 weeks now I just cry all the time).
*I started tapering the 0.5mg of Ativan I was on end of April because at the time, So I went from a PRN type of deal -every other night to every day divided doses. I didn’t know what was happening to me and a friend said it sounded like some kind of benzo w/d when I stopped the indur. The taper has been very slow. From the one dose of .5mg to .3mg divided into 3 doses.
*Ive read high NO can cause psychoactive drugs to be more potent so maybe that’s why it felt like huge hit when I stopped the Imdur and maybe that’s why I’m feeling overdosed with such a small about now? But I’d that’s the case…why the added vasodilation - unless it’s histamine as Imdur is also a functional antihistamine?
I can’t tell if my picture has changed completely and I’ve gone from needing additional vasodilation to now having too much? I’ve read that could be the reason why my Ativan now causes scary shallow breathing and waking with coughing fit). I noticed on the Imdur monograph that it’s also a functional acetylcholine, serotonin and histamine antagonist - which kind of hits many of the theories about ME/CFS - well the acetylcholine, vasodilation and histamine theories anyways.
I would hop back in and try the Imdur but I’m so scared. I’m bed bound as it is and not sleeping and scared I’m going to die so I’m just not in a good space for trying things.
Can anyone smarter than me comment on this, help me hash it out, or relate to it in any way?
