i also have a bunch of other shit. to name a few - degenerative disc disease, fibromyalgia, osteoarthritis in my hands and wrists, polyneuropathy, and hyperpots
😬
😬
December 7, 2024 at 1:33 AM
i also have a bunch of other shit. to name a few - degenerative disc disease, fibromyalgia, osteoarthritis in my hands and wrists, polyneuropathy, and hyperpots
😬
😬
the humidity makes my hyperPOTS issues so much worse
my bp this morning was horrific for feeling ok standing on my own (166/111!!!) 😭
my bp this morning was horrific for feeling ok standing on my own (166/111!!!) 😭
June 11, 2026 at 10:03 PM
the humidity makes my hyperPOTS issues so much worse
my bp this morning was horrific for feeling ok standing on my own (166/111!!!) 😭
my bp this morning was horrific for feeling ok standing on my own (166/111!!!) 😭
Hey #NEISvoid, talk to me about hyperPOTS and MCAS?
I have a sinking feeling my own POTS has morphed into the hyperadrenergic kind
What are y'all's tips and tricks, because salt is wrecking me rn and I get pressure urticaria from compression garments
I have a sinking feeling my own POTS has morphed into the hyperadrenergic kind
What are y'all's tips and tricks, because salt is wrecking me rn and I get pressure urticaria from compression garments
February 11, 2025 at 5:55 PM
Hey #NEISvoid, talk to me about hyperPOTS and MCAS?
I have a sinking feeling my own POTS has morphed into the hyperadrenergic kind
What are y'all's tips and tricks, because salt is wrecking me rn and I get pressure urticaria from compression garments
I have a sinking feeling my own POTS has morphed into the hyperadrenergic kind
What are y'all's tips and tricks, because salt is wrecking me rn and I get pressure urticaria from compression garments
apixaban & aspirin (blood thinners); cetirizine, famotidine, oral sodium cromoglycate, ketotifen, montelukast, LDN & NasalCrom (all for MCAS); ivabradine & propranolol (HyperPOTS); Maxalt (migraine); HRT; hydroxychloroquine (for recently added lupus)
4/6
4/6
November 15, 2024 at 4:11 AM
apixaban & aspirin (blood thinners); cetirizine, famotidine, oral sodium cromoglycate, ketotifen, montelukast, LDN & NasalCrom (all for MCAS); ivabradine & propranolol (HyperPOTS); Maxalt (migraine); HRT; hydroxychloroquine (for recently added lupus)
4/6
4/6
May 4, 2025 at 9:52 PM
I got the tip for clonidine from another person with MCAS and hyperPOTS so I am absolutely paying it forward!
September 17, 2025 at 9:23 PM
I got the tip for clonidine from another person with MCAS and hyperPOTS so I am absolutely paying it forward!
Exhaustion
Migraines
Histamine fuckery
HyperPOTS
Exhaustion
Migraines
Histamine fuckery
HyperPOTS
Exhaustion
January 4, 2025 at 1:46 PM
Exhaustion
Migraines
Histamine fuckery
HyperPOTS
Exhaustion
Migraines
Histamine fuckery
HyperPOTS
Exhaustion
Clonidine? I had similar and switched to extended release quanfacine and have really liked it. I have MCAS and Hyperpots.
August 20, 2025 at 2:02 PM
Clonidine? I had similar and switched to extended release quanfacine and have really liked it. I have MCAS and Hyperpots.
Mito supps: Oxaloacetate, NAD+ subcut, MitoQ, bicarb soda baths (offsets lactate from being over anaerobic threshold), liposomal glutathione.
Other supps: Salt tablets (HyperPOTS), melatonin, olive leaf (antiviral), lipo Vit C, Bioceuticals Migraine Care (magnesium,feverfew)
5/6
Other supps: Salt tablets (HyperPOTS), melatonin, olive leaf (antiviral), lipo Vit C, Bioceuticals Migraine Care (magnesium,feverfew)
5/6
November 15, 2024 at 4:11 AM
Mito supps: Oxaloacetate, NAD+ subcut, MitoQ, bicarb soda baths (offsets lactate from being over anaerobic threshold), liposomal glutathione.
Other supps: Salt tablets (HyperPOTS), melatonin, olive leaf (antiviral), lipo Vit C, Bioceuticals Migraine Care (magnesium,feverfew)
5/6
Other supps: Salt tablets (HyperPOTS), melatonin, olive leaf (antiviral), lipo Vit C, Bioceuticals Migraine Care (magnesium,feverfew)
5/6
Within two hours someone else with hyperPOTS who had been through the same thing said "oh yeah, clonidine has mast cell stabilizing properties, I've been on it for years", heh.
May 24, 2025 at 12:11 PM
Within two hours someone else with hyperPOTS who had been through the same thing said "oh yeah, clonidine has mast cell stabilizing properties, I've been on it for years", heh.
Need something zero stress to watch to help keep my HyperPots symptoms at bay so I put on Meghan Markle’s new show.
March 6, 2025 at 7:29 PM
Need something zero stress to watch to help keep my HyperPots symptoms at bay so I put on Meghan Markle’s new show.
Health stuff has gotten worse lately. Likely hyperPOTS. Might go on disability. I had to take the last week off of work.
July 27, 2026 at 4:57 AM
Health stuff has gotten worse lately. Likely hyperPOTS. Might go on disability. I had to take the last week off of work.
If she's on any of the beta blockers, for instance, they are *massive* MCAS triggers and make the BP problem much worse in hyperPOTS patients with concomitant MCAS, and unless the doctor knows that, it just looks like the underlying heart problems are getting worse and worse.
November 24, 2023 at 10:55 PM
If she's on any of the beta blockers, for instance, they are *massive* MCAS triggers and make the BP problem much worse in hyperPOTS patients with concomitant MCAS, and unless the doctor knows that, it just looks like the underlying heart problems are getting worse and worse.
Heute doppelter Puls im Stehen und das trotz Clonidin, LDN, Amifampridin, GLP1 und TG50, möchte lieber nicht wissen, wie beschissen das jetzt ohne wäre.
#MEcfs #HyperPOTS #Polyneuropathy
#MEcfs #HyperPOTS #Polyneuropathy
July 14, 2026 at 11:25 AM
Heute doppelter Puls im Stehen und das trotz Clonidin, LDN, Amifampridin, GLP1 und TG50, möchte lieber nicht wissen, wie beschissen das jetzt ohne wäre.
#MEcfs #HyperPOTS #Polyneuropathy
#MEcfs #HyperPOTS #Polyneuropathy
My anxiety also causes spikes in my heart rate related to chronic illness, including long covid and suspected hyperPOTS. Does that make LC and hyperPOTS anxiety disorders just because anxiety can trigger an episode? Of course not!
September 9, 2026 at 9:36 PM
My anxiety also causes spikes in my heart rate related to chronic illness, including long covid and suspected hyperPOTS. Does that make LC and hyperPOTS anxiety disorders just because anxiety can trigger an episode? Of course not!
I was recommended clonidine by another hyperPOTS EDS patient on Twitter and it's been doing okay for me so far!
December 5, 2023 at 1:37 AM
I was recommended clonidine by another hyperPOTS EDS patient on Twitter and it's been doing okay for me so far!
Did anybody with #POTS and / or #MECFS try #Desmopressin?
I could convince my doctors for a try, but i do not know if its better in the morning or evening to take.
#PWme #HyperPOTS #neurogenicbladder #Polyneuropathy
I could convince my doctors for a try, but i do not know if its better in the morning or evening to take.
#PWme #HyperPOTS #neurogenicbladder #Polyneuropathy
February 21, 2025 at 5:37 AM
Did anybody with #POTS and / or #MECFS try #Desmopressin?
I could convince my doctors for a try, but i do not know if its better in the morning or evening to take.
#PWme #HyperPOTS #neurogenicbladder #Polyneuropathy
I could convince my doctors for a try, but i do not know if its better in the morning or evening to take.
#PWme #HyperPOTS #neurogenicbladder #Polyneuropathy
Guanfacine has been great for my hyperpots without being an issues for my MCAS.
June 19, 2025 at 8:46 PM
Guanfacine has been great for my hyperpots without being an issues for my MCAS.
When you have #hyperpots and flip to wicked bradycardia. My resting heart rate has been 47-52 and my highs have been 100-110.
I’m so over this.
#chronicillness #pots #hyperadrenergicpots #bradycardia #dysautonomia #neurologicalnightmare
I’m so over this.
#chronicillness #pots #hyperadrenergicpots #bradycardia #dysautonomia #neurologicalnightmare
April 29, 2025 at 11:08 PM
When you have #hyperpots and flip to wicked bradycardia. My resting heart rate has been 47-52 and my highs have been 100-110.
I’m so over this.
#chronicillness #pots #hyperadrenergicpots #bradycardia #dysautonomia #neurologicalnightmare
I’m so over this.
#chronicillness #pots #hyperadrenergicpots #bradycardia #dysautonomia #neurologicalnightmare
Nachdem mein Erfolg mit #Amifampridin sehr überschaubar war, starte ich demnächst eine Runde mit Low-Dose-Naltrexon (LDN).
Einer Bekannten hat es sehr geholfen.
#Lowdosenaltrexon
#MEcfs
#HyperPOTS
#POTS
#Polyneuropathie
Einer Bekannten hat es sehr geholfen.
#Lowdosenaltrexon
#MEcfs
#HyperPOTS
#POTS
#Polyneuropathie
March 1, 2026 at 6:57 AM
Nachdem mein Erfolg mit #Amifampridin sehr überschaubar war, starte ich demnächst eine Runde mit Low-Dose-Naltrexon (LDN).
Einer Bekannten hat es sehr geholfen.
#Lowdosenaltrexon
#MEcfs
#HyperPOTS
#POTS
#Polyneuropathie
Einer Bekannten hat es sehr geholfen.
#Lowdosenaltrexon
#MEcfs
#HyperPOTS
#POTS
#Polyneuropathie
I keep forgetting to post here since I started using [the evil one] again. But I recently saw a doctor specializing in long covid. I feel a little hope for the first time in a long time. It turns out I may have MCAS (which makes sense with hyperPOTS + hypermobility). So we're treating that first.
August 6, 2024 at 11:11 PM
I keep forgetting to post here since I started using [the evil one] again. But I recently saw a doctor specializing in long covid. I feel a little hope for the first time in a long time. It turns out I may have MCAS (which makes sense with hyperPOTS + hypermobility). So we're treating that first.
--and methyldopa has been unavailable in the US since 2021 or so thanks to pandemic manufacturing issues taking out the sole supplier. So I was really glad clonidine (mostly) works for me since I have hyperPOTS and MCAS combined, sigh.
October 4, 2024 at 1:33 PM
--and methyldopa has been unavailable in the US since 2021 or so thanks to pandemic manufacturing issues taking out the sole supplier. So I was really glad clonidine (mostly) works for me since I have hyperPOTS and MCAS combined, sigh.
I think one of the hardest things personally about my transition journey, is that whatever chronic illness I have (assumed HyperPOTS) really doesnt like me taking testosterone.
Im not in danger taking it per say, or they wouldnt let me have it. But it does make me physically feel like shit often.
Im not in danger taking it per say, or they wouldnt let me have it. But it does make me physically feel like shit often.
April 20, 2025 at 1:09 AM
I think one of the hardest things personally about my transition journey, is that whatever chronic illness I have (assumed HyperPOTS) really doesnt like me taking testosterone.
Im not in danger taking it per say, or they wouldnt let me have it. But it does make me physically feel like shit often.
Im not in danger taking it per say, or they wouldnt let me have it. But it does make me physically feel like shit often.
All good. Totally fine. Definitely not about to pass out.
#pots #hyperpots #dysautonomia #chronicillness
#pots #hyperpots #dysautonomia #chronicillness
November 18, 2024 at 1:00 AM
All good. Totally fine. Definitely not about to pass out.
#pots #hyperpots #dysautonomia #chronicillness
#pots #hyperpots #dysautonomia #chronicillness
I also made a massive thing about having ME... and not having it (for now), just a VERY severe form of hyperPOTS secondary to mast cell stuff from a billion food allergies and GI issues is just, not fun to explain to a mass audience. Nobody cared when I thought I had ME. I can see why.
August 19, 2026 at 1:44 PM
I also made a massive thing about having ME... and not having it (for now), just a VERY severe form of hyperPOTS secondary to mast cell stuff from a billion food allergies and GI issues is just, not fun to explain to a mass audience. Nobody cared when I thought I had ME. I can see why.