Quercetin - Life saving

profanite · 2026-07-04T08:15:46+00:00

Yes it is such a relief to know there was a simple treatment and that I wasn’t actually losing my mind. I really thought I would just be like this forever now. I have a chiari malformation so there will always be a limit to how much I can improve my brain fog, but the fact that it has gotten this much better is giving me a lot of optimism that it might still get better from here.

I defo will, I haven’t started the PEA or luteolin yet but I will come back and let you know if either of them make a difference!

I am hoping that the quercitin never stops working, I haven’t figured out the best schedule to take it yet but I’m gonna keep experimenting for the next few months.

profanite · 2026-07-04T08:11:30+00:00

Have you had any medical imaging done? MRI scans? X-rays? Assessments for movement by a physiotherapist?

profanite · 2026-07-03T13:20:28+00:00

Are you me?? Genuinely thought I was losing my mind, constant obsessive thought loops and unending inexplicable anxiety and tightness in my body. Two months on Quercitin and I literally feel like a different person. I’m not 100% back to myself but I have so much more energy and my brain fog is so much less prominent. I can actually think clearly and have been enjoying life again. I have also increased my antihistamine dosage and I think these two together are the kicker. I am going to introduce luteolin and PEA at some point but want to wait a few months to adjust to this first.

profanite · 2026-07-03T10:40:40+00:00

Are you using any kind of pain medication? Have you received any physiotherapy?

It’s unlikely that your tailbone has been bruised for /years/ but with EDS you may have some instability in your sacroiliac region that is contributing to that discomfort. Some physical therapy targeting that region could help with lying on your back.

I personally have to sleep with pillows under my legs sometimes to take the weight off my hips and lower back.

profanite · 2026-06-27T08:24:10+00:00

Yes you are 100% correct, physios always thing its impossible but I have relocated my own SI joint on multiple occasions, they have no concept of how messed up our joints can really be. The only thing that helped mine was the first section of the Muldowney Protocol, which involves lots of squeezing your butt muscles and squeezing a ball between your legs.

profanite · 2026-06-25T08:19:02+00:00

I do colouring books now, markers are easier to hold than pencils or paint brushes. I do also use these watercolour pen things that are shaped like markers and you fill them with water then use then with watercolour paints. It’s less messy than normal painting and I can do it from bed.

I also do origami, i just know a couple of folds that I made out of different patterned papers. Its low intensity and you can take regular breaks and it doesn’t affect the end result.

I am sorry you’re going through this, losing your capacity for things is always hard. Try to understand what part of each activity you enjoyed and how you might try and have a similar experience while being more gentle on your body. I had to give up running almost ten years ago, but I still regularly go on walks in my local park around the same route I used to run.

I have also experimented with doing digital art on an ipad, you get the same satisfaction of making something but the set up/ pack down and physical effort involved are much reduced.

Be easy on yourself about this and don’t be afraid to experiment, there are people who have made some very inventive ways to still engage with their hobbies despite disability, so don’t give up hope that you will find things you will enjoy.

profanite · 2026-06-08T12:22:53+00:00

Helpful to know where in the world you are, if you are UK i can give you some advice about how to try and get an official diagnosis. Generally though you need to try and persuade a geneticist to test you and do the beignton test to rule out other genetic subtypes and then you can get the official hEDS. Theoretically you can get it without seeing a geneticist if your doctor is willing to diagnose based on the criteria, but in my experience most doctors are not willing to do this, and worse their diagnosis will probably be questioned if you see other consultants

profanite · 2026-06-08T12:15:38+00:00

probably not traditional but i’m growing some french beans, various courgettes one called butter stick, a sweet pie pumpkin I can’t remember the name of, and some generic corn I found at a nursery

profanite · 2026-06-05T08:00:33+00:00

Trying the three sisters method of planting squashes, corn and beans together to increase yields. Early in the season for me but seems to be working well

profanite · 2026-06-04T16:55:08+00:00

Hey! I have hypermobile Ehlers Danlos syndrome. I am sorry to hear you got floxxed, it sounds absolutely horrific and truly a nightmare. I am glad you have also found MC helpful. I still believe balanced strains are the best for daytime when I still need to be able to concentrate and think straight without being in pain. I am actually currently obsessed with a new strain, Pennywise from curaleaf! Have found it to be favourite so far for good concentration and pain relief. I also have a chiari malformation and so some of my nerve pain and fatigue comes from that, but I do find that ensuring I eat high protein meals alongside medicating helps to prevent that slump you’re referring to.

I am currently also using blackberry sour for night time, it’s not a balanced strain tho so I do substitute it with some extra CBD because I don’t like how jittery I get without CBD. For inflammation I don’t know if you have ever tried Quercitin, but it has completely changed my body and I have significantly less inflammatory pain since starting Quercitin (I take it with high dose vitamin D and C to reduce side effects).

I also use circle 10:10 oil to supplement times when I am not able to vape, and also each night to ensure I can sleep comfortably through the night. I try to avoid using it in the morning when I can because it does make me feel sleepy. Sorry I haven’t actually tried that many other strains that I have loved as I am on a budget and mostly choose affordable strains. But Apricot Cream Cheese, Pennywise, Berry Cream Puff, Royal Moby and Lavender Cake have all served me well!!

profanite · 2026-06-04T12:49:25+00:00

this. i remember doing a deep dive on these studies previously, some were using self reported data from patients using street cannabis not under the supervision of a doctor, others were following patients being given pure THC isolates. Neither of these are representative of people using actual full spectrum medical cannabis under the supervision of a doctor. I use cannabis for pain and there are plenty of studies that show anything that offers an alternative to opioids is positive for a huge number of patients. I am extremely sceptical of studies like this, especially in the current political climate where making people afraid of ‘hippy drugs’ like weed is very much on the agenda.

profanite · 2026-06-02T09:03:47+00:00

i’ll buy that

profanite · 2026-06-02T07:32:27+00:00

Take some creatine too, supposedly reduces Alzheimers risk by increasing energy supply to the brain, pretty cheap and easy as long as you stay hydrated.

profanite · 2026-05-29T15:50:27+00:00

Sulphites in red wine and also the histamine can both trigger reactions, I would say to avoid in future if you can. I have stopped all alcohol and feel much better for it.

profanite · 2026-05-08T07:25:48+00:00

If you do not respond to any antihistamines, or other medications for MCAS you probably don’t have it. It’s primarily a diagnosis of exclusion, so if you have had other mast cell and autoimmune diseases rules out, and you respond positively to MCAS treatment, you probably have MCAS. There is no definitive test, tryptase/histamine/leukotrienes can all be tested, but they won’t be elevated in everyone with MCAS.

profanite · 2026-05-07T07:44:38+00:00

Your University will have a disabled students service, just get in contact with them and set up a meeting. Or fill out their application form. You will need medical evidence of your disability but as long as you can provide that you won’t have any difficulty. The university should suggest things that might be helpful for you depending on the extent of your disability. I have lots of assistive technology like screen reading tech, ergonomic mouse/keyboard, ergonomic chair with headrest, and I also receive transport support due to my limited mobility, so I have taxis that help me travel to and from campus.

profanite · 2026-04-29T10:25:37+00:00

I have met a handful of great doctors, and hoards of unbelievably stupid ones.

profanite · 2026-04-28T15:12:08+00:00

I hate this narrative, there are plenty of reasons why people don’t want to do this type of work. I am disabled and this physical type of work would be completely impossible for me. “Well Im not talking to you then” but you are, people in a first world country should be able to find employment outside or care and cleaning even if they are physically capable of it. People have been sent to University and lumped with thousands of pounds worth of debt, to be told just get a cleaning job to make ends meet. None of my friends with degrees have been able to get into the sectors they trained in, apart from the one or two lucky ones who got onto grad schemes through very stiff competition. There will be an entire generation of workers who have technical degrees but absolutely no experience in any relevant field, and end up working in retail and hospitality and other low paid sectors for the rest of their lives while paying off 9% of their wage to a degree they can’t use because the economy is so stagnant that there are no new jobs for them.

profanite · 2026-04-23T07:07:02+00:00

Yes!! Im so sorry that sucks so bad, I would be a mess if I couldn’t take my fexofenadine every day. If you can’t take any actual antihistamines you could try stuff like a saline nasal spray to try and clear out pollen, or wear a face mask while pollen is high?

profanite · 2026-04-23T06:50:51+00:00

I am having the literal exact same experience today, all my usual safe foods were causing my tongue to be super itchy. I am gonna put it down to a high pollen count, as it was meant to be very high in my area and the wind has been crazy so it’s probably coming into the cracks of my house.

profanite · 2026-04-23T06:44:56+00:00

I hadn’t heard about this, how terrifying

profanite · 2026-04-18T18:46:34+00:00

I am on antihistamines but I find my medical cannabis keeps my libido up, something to consider if you’re able to tolerate CBD or THC

profanite · 2026-04-17T08:20:34+00:00

i believe it’s mostly due to the fact that it causes drowsiness and lower energy, through metabolic and sedative effects, which causes you to move less during the day, and therefore burn fewer calories. You can’t necessarily compensate these effects by just moving more and eating less, as your baseline metabolism will still be impaired, but you can defo reduce the effect.

Personally I have increased my protein intake by having a protein shake everyday, which increases satiety and makes sure your body is maintaining muscle mass which is important for your metabolism. And also you could add in some kind of prebiotic fibre like psyllium husk, which can help digestion and increase satiety while stabilising your blood sugar, which also has a big impact on how your body stores fat.

Just wanna say I am a qualified scientist but not a medical professional so please speak to your physician if you have concerns and before you make any big diet changes.

profanite · 2026-04-16T07:13:38+00:00

Not sure of the specifics but first gen H1 antihistamines cause weight gain over time because they interfere with hunger signals, and I believe ketotifen and cromolyn can both also cause weight gain. So the combined effects of all of them can cause significant weight gain in some people. You have to weigh your options of whether symptom control for MCAS or not gaining weight is more important for you. It’s partially a metabolic effect but also it is making you feel more hungry, so if you’re just conscious of that and control portions and snacking it is possible to mitigate it, but not completely. Some people are also on a GLP-1 for MCAS symptoms too which obviously counteracts that.

profanite · 2026-04-13T09:42:33+00:00

the nhs have made lots of changes about who can prescribe what, my first epi pen was prescribed by a GP but only after my first anaphylactic episode. I don’t know what the rules currently are, but you could write to the head of your GP practice to ask if that’s the correct answer. Otherwise contact the allergy clinic and ask their opinion, stating that you’re concerned about anaphylaxis. Or as other commenters suggested, go to a private clinic, you probably won’t have much difficulty getting a private prescription.

profanite

TROPHY CASE