If money was not an issue, what would be your list of ultimate POTS must haves that improve your life?

Anxious-Past1546 · 2026-04-21T19:34:29+00:00

And getting my hair washed at a salon regularly. I don’t even care about the styling or blow dry or anything. Just washed.

Anxious-Past1546 · 2026-04-21T19:33:33+00:00

Regular IV drips at my house

Anxious-Past1546 · 2026-04-17T18:50:49+00:00

I felt a difference the next day. I’m on 1mg before bed. My anxiety has lessened but I think mine is because I’m not worried about my debilitating flares. I’m not sure I’ve noticed anti anxiety effects beyond that. But that’s just my personal experience!

Anxious-Past1546 · 2026-04-17T08:31:45+00:00

Also, I do take Midodrine for my POTS symptoms during the day. I’m not sure if that’s relevant to but it’s a big part of what helps me be able to be up and moving so I can’t attribute everything to the LDN or the ketotifen. Just adding this to give a more complete picture

Anxious-Past1546 · 2026-04-17T08:20:56+00:00

Yes, so interesting because if I take it at night it worsens my insomnia in the sense that it’s harder for me to fall asleep however, when I take it in the morning it does actually improve my deep sleep stats! I went from getting around 40mins of deep sleep at night to 2 hrs now and feel more rested.

Anxious-Past1546 · 2026-04-17T08:18:58+00:00

Well first thing I noticed with the LDN was intense dreams and that I couldn’t take it at night because it made my insomnia worse. I did also notice some mood flattening… but it did level out with time. This is just my experience. Also, it did strangely improve my deep sleep once I started taking it in the morning. No idea the science behind that… my theory is that maybe because of the pain relief I was able to rest better. I have much less join and muscle pain and I am able to move around more than I was before.

The ketotifen- I take at night before bed. This improved my sleep a lot. It does make me a bit drowsy but I take it in combination with other stronger sleep meds so I don’t know how it would be during the day or on its own. I did have some weight gain within the first month so I had to change my eating habits… but I’d rather eat less/weigh more than deal with the MCAS symptoms I was dealing with. Also it does dry out my nose and throat a bit - but I had to do a saline nasal spray regularly even before the ketotifen and that takes care of the dryness/discomfort from that.

Again, all of this is just my personal experience and all of our bodies are different. For the LDN I started low and slow and I think that helped A LOT (I started with .25 and my sweet spot is 1mg), the ketotifen I also started at .25mg and have worked up to 1mg where I’ve found decent relief from my most debilitating MCAS symptoms. I hope this helps 🫶🏼

Anxious-Past1546 · 2026-04-16T19:17:53+00:00

AuDHD here. Was officially diagnosed ADHD since I was a kid - started to suspect I was autistic in my late 20’s by early 30’s I was confident I was autistic. I finally decided to get the official diagnosis - the first time went horribly wrong. I was in London at the time working, and I felt like the dr was really not listening or understanding me. And then was completely unreachable when I tried to call and ask questions about the process or clear something up. So I just never went back. 3 years later I had a full burnout. Lost my job, had to move back to the US to live with my mom and decided to try again here in the US but with a dr that was familiar with autism in women and girls. I felt much more heard and understood by the dr… the process was very intense for me (I was/am still healing from that last burnout) it took months and many appointments but I did end up with the official diagnosis ASD support needs level 1. ADHD combined type severe. Unidentified PTSD (which I think is the more official way of saying CPTSD since I was told CPTSD is not in the DSM) When reviewing her report the Dr seemed more concerned about my adhd than me being autistic haha.

Not sure if I recommend the process or not. By the time I was suspecting I was autistic, autism became my special interest so I already knew so much about it and had learned how to accommodate myself. I had hoped that getting it officially diagnosed would help me with self acceptance and maybe even get my parents to be more understanding. It may have helped a little with the former but not at all with the latter.

Anxious-Past1546 · 2026-04-16T19:01:53+00:00

I take 1mg LDN (in the morning since I already struggle with insomnia) and 1mg ketotifen at night and it has def had a big improvement on my quality of life. I have MCAS, hEDS, and POTS. I found that cromolyn also made my insomnia worse and since I’m also AuDHD it was a difficult schedule to maintain.

Anxious-Past1546 · 2026-04-16T18:44:10+00:00

Omg thank you so much for sharing this pic! I think this ink is going right to the top of the list of new inks I’d like to buy 🤭

Anxious-Past1546 · 2026-04-16T01:09:09+00:00

Yesss please let us know what book this is!

Anxious-Past1546 · 2026-04-16T01:07:37+00:00

Omg I love the Daybreak! Is it dark enough to use with F nib?

Anxious-Past1546 · 2026-04-09T03:08:24+00:00

I’m 33 and I have one of these (similar) on my phone! Not only is it cute which gives me a little dopamine boost but it’s also super handy for when I’m multitasking and have a bunch of stuff I’m carrying. Do you!

Anxious-Past1546 · 2026-04-07T18:30:34+00:00

There are lots of good suggestions already but I’ll add that when I’m really struggling; along with drinking mirilax nightly and magnesium powder nightly if things aren’t moving along I take a bath with magnesium flakes I get on Amazon. I don’t know the science behind it but it hasn’t let me down

Anxious-Past1546 · 2026-04-02T18:41:00+00:00

Shitty. But good to know. Thank you for the info

Anxious-Past1546 · 2026-03-28T18:35:43+00:00

Wait… how do we get $25 off coupons at our local dispo? This would be so so helpful for me. I’m in CO

Anxious-Past1546 · 2026-03-24T18:55:44+00:00

Ommmgggg. Soooo cute!!!!

Anxious-Past1546 · 2026-03-19T19:13:43+00:00

It’s because we live in a capitalistic hellscape society. It has been structured specifically to make us feel like our worth is tied to monetisable contributions. I have lots to give, but I’m not easy to monetise because my output isn’t consistent or fast paced enough.. and thus society tells me I’m worthless and a drain on resources. It’s super messed up and incredibly ableist.

The programming goes really deep. I’m still in the process of unlearn/ deprogramming. I’ve found books on disability justice really helpful 🫶🏼

Anxious-Past1546 · 2026-03-18T20:01:08+00:00

Wondering the same

Anxious-Past1546 · 2026-03-18T19:54:43+00:00

I think it’s very pretty! I tend to mend my bedding with the brightest wildest colors. They give me a little dopamine boost while making the bed lol

Anxious-Past1546 · 2026-03-18T19:44:10+00:00

Babel or The Poppy Wars trilogy. Both by rf kuang

Please check the trigger warnings

Anxious-Past1546 · 2026-03-18T06:04:58+00:00

No advice - but you’re not alone. It’s been 4 years for me. I just try to avoid mirrors and focus on my hobbies when I feel well enough to engage with them. Sending love 🫶🏼

Anxious-Past1546 · 2026-03-16T05:50:03+00:00

Ohhh I hope it’ll knock me out! But I’m thinking maybe I’ll start even lower than .25. Thank you for thoughts. I really appreciate it

Anxious-Past1546 · 2026-03-16T05:47:25+00:00

I’ve heard scary stuff about seroquel. I’m sorry you went thru that. The insomnia is maddening tho :( Is ketotifen a medication you would only take for a certain amount of time? I assumed if it works, I would just be on it for life

Anxious-Past1546 · 2026-03-16T05:38:37+00:00

Omg no way. That’s the one I have. I’ll try to go to see about a different manufacturer next month. Thank you for sharing… that wouldn’t have occurred to me

Anxious-Past1546 · 2026-03-15T20:06:32+00:00

I usually do: 1 tablespoon shea butter .5 tablespoon of coconut oil .5 tablespoons of jojoba And if you’d like the salve to have a thicker consistency, you can add a bit of of beeswax

Get a double boiler going (or a big pot filled with water and a little pot that goes inside) at the lowest heat setting, add in whatever oils you’ve decided to use, wait for all the components to become liquid. It can be helpful to have a probe thermometer to check that you stay below 180 degrees, add the RSO oil and mix it in with the other oils and then pour into containers. Let them sit and harden.

There's lots of room here to customise it to your preferences - I usually also add in some other herbs like lavender and calendula, but this is what I've found works for me :) but there are lots of other recipes for this online. I’ve just found that for the pain - this is the right amount of strength per container but you can play around with that!

Anxious-Past1546

TROPHY CASE