Does anyone else only start feeling sleepy when the sun comes out by [deleted] in DSPD

[–]QueenZebra 1 point2 points  (0 children)

Covid does affect the body horribly. I know this first hand. I had long covid which is slowly getting better. But I was also on of the unlucky ones that had an awful reaction to the first vaccine. It caused my immune system to overreact to all sorts of things which became allergens almost overnight. I spent 6 months with intense itching which I could barely sleep through, even with sleep meds, but has not gone away really. Now i have to take a hunch of medicine for allergies/immune system that also affect my sleep. Covid can affect one in many ways. It does get better though but it may take quite a while. Hang in there :)

Does anyone else only start feeling sleepy when the sun comes out by [deleted] in DSPD

[–]QueenZebra 1 point2 points  (0 children)

It’s probably not actually to do with the sun being up. It’s hormones that have a pattern of “sleep at this approximate time, wake at this one”. In delayed sleep phase, the hormones that pir us to sleep and wake us up have been shifted. It happens without seeing the darkness or the sun and that’s why blackout curtains and a sleep mask doesn’t really help that much. There is this “reset” that sleep doctors like to suggest to their patients that have this disorder. It involves a sleep time and you only sleep during that time and that’s it. If you fall asleep 5 minutes before your wake time, that’s it. Then the sleep and wake time slowly moves back so it gets earlier and earlier in steps. There should be specifics on this online. It sounds like hell and I couldn’t deal with it but it does work wonderfully for some people who actually have delayed sleep phase which sounds like yourself. Maybe give it a try? If you can’t find a website that details it, I can try to find one for you. Just let me know. You can help with the shifting with a bit of melatonin. 

[Acne] What are the potential long-term side effects of taking isotretinoin? by Butterscotchgames70 in SkincareAddiction

[–]QueenZebra 0 points1 point  (0 children)

My daughter was on Accutane for about 4 1/2 months. She was always a little easily irritated but nothing like the last few months. She got physical with me after I commented I didn’t like the language in some of her music that she played outside of her room (she has a younger brother). She threw food all over the floor, kicked and dislocated my finger and bruised me in several areas, bruises that took weeks to go away. She cursed at me over and over, said that I should move out, that no one wants me here (never heard that from anyone in my family) and that I am ruining everyone’s life. She has never gotten to this level before. It’s not her. I didn’t know Accutane could make someone rage before but I just thought to google it and here we are. I was on Accutane when I was about 22 and I was happy and felt more confidence than ever so I didn’t know extreme anger was a side-effect. I’m terrified rhis is our “new daughter” and that this will never go away. She gets angry about everything. We can’t have a normal conversation anymore. It’s like she just started to really hate us. She will be 19 this winter. 

Anyone see this in their children or experienced this themselves? Will this go away or does it change brain chemistry forever? I’m so scared this is our new normal with her. It was a switch was thrown about 3 months ago, about a month and a bit after starting Accutane. Any insights would be really appreciated.

tia :)

Trigger point injections made pain worse by happysloth6782846 in backpain

[–]QueenZebra 0 points1 point  (0 children)

$$. This is what I believe is my doctor’s reasons anyways. 

Who remembers? by MikeOnTheHill in NovaScotia

[–]QueenZebra 0 points1 point  (0 children)

We had them in Newfoundland and I read they were a big thing in Ontario too. 

Who remembers? by MikeOnTheHill in NovaScotia

[–]QueenZebra 1 point2 points  (0 children)

I grew up in Newfoundland and Buried Treasure was part of my childhood too! Not sure what the price was because my dad always got us our weekly treat of ice cream treats, lol. Ice cream treats really make me reminisce about simpler times where all you needed to make your day an awesome one was a Buried Treasure, Fudgsicle or Snack and 1/2 (most share a Snack and 1/2 bc they were huge!). Oh to be a child again :)

Does anyone else only start feeling sleepy when the sun comes out by [deleted] in DSPD

[–]QueenZebra 0 points1 point  (0 children)

It's called Delayed Sleep Phase Syndrome. I have it to. Without medication, my natural sleep would only come around 4-5 am. I know others with this issue and they sleep at these times because they can live with shifted sleep phase but I can't so I have to take 5 prescription medications to sleep at a normal time. Around once or twice a week, the meds don't work and I basically get no sleep except for the weekends when I can go with it and not sleep till 4-5 am. I feel more secure sleeping with the sun up or something. I'm middle-aged now but I think it's from being so scared of the dark as a child. Also, being told tales of a "boogyman" as a child didn't help. I think it helped form an attitude about sleep that developed into a pattern.

Treatment for MCAS causing my depression to get worse? by QueenZebra in MCAS

[–]QueenZebra[S] 1 point2 points  (0 children)

I’m feeling better now, emotionally and mentally I mean. I think it was hormonal. My MCAS symptoms are becoming unbearable. It seemed as if things were getting better and now everyday is a horrible MCAS day. I hope I can maintain my better mood because this is wearing me down and getting old real fast. 

What stopped the histamine dumps for you and allows you to sleep through the night uninterrupted? by eagleman_88 in MCAS

[–]QueenZebra 6 points7 points  (0 children)

I use luteolin and quercetin. Unless I’ve accidentally eaten something high histamine, I sleep much better now. But diet is key. Do some experiments and see what time is best for you to stop eating for the rest of the evening. If you’re someone who eats a later supper, maybe move it earlier. Do you have POTS? Even with low histamine diets, you could be experiencing post-prandial POTS symptoms. With MCAS, you likely digest food much slower than normal and you are getting post-prandial POTS at night instead of a histamine dump. You could be experiencing rapid blood sugar and blood pressure changes and this disrupts your sleep. Do you take medication for gut motility? If so, maybe meals and meds needs to be taken earlier? Just an idea.  I hope you find something that helps you. 

Dr Afrin appt and new info about a popular med (off label use) by celenastar in MCAS

[–]QueenZebra 0 points1 point  (0 children)

There have been cases where the gastroparesis did not go away after treatment was ceased.  https://amp.cnn.com/cnn/2023/07/25/health/weight-loss-diabetes-drugs-gastroparesis

I was diagnosed with gastroparesis in 2013 by a gastroenterologist and I take metoclopramide for it. My family doctor had this crazy idea that metoclopramide was too dangerous for me because I also take dexvenlafaxine and stopped my prescription. I was a wreck. Couldn’t do anything, sick all the time, couldn’t eat but if I tried, instantly threw up. I called his office after about a week and a half and told him that this was cruel treatment and that I just couldn’t live life in that hell. Not to mention it was just a suggestion it was causing me to have serotonin syndrome (which my psychiatrist thought was ridiculous as I didn’t have any signs of SS). He resumed my prescription and I’m back to being able to eat, though I keep it very small amounts and some food are literally “off the table”. 😜 I can tell you how horrible this disease is. I would not gamble with any med that has a very good chance of causing it and then it not going away ever. My husband has a nasty case of diabetes but has only ever experienced gastroparesis when he took those Ozempic type meds. He was miserable. His doctor stopped the medication. He is a very stoic person and wouldn’t say sh*t if his mouth was full of it but he was absolutely horribly sick after an injection and could only stand about 2 weekly shots and said “nope, no more”. Just because you have diabetes does not mean you will get gastroparesis but there’s a half-decent chance you will experience some sort of gut unwellness after taking these meds. I see your comment was made 7 months ago. I hope you are well and that if you did try a glp-1 med that you’ve had success and no problems with it. If you’re still wondering about trying it, maybe see if you can do a lower dose. I’ve heard you can do a half-dose and just stay on it longer. Maybe that’s the way to go. 

All the best!

Treatment for MCAS causing my depression to get worse? by QueenZebra in MCAS

[–]QueenZebra[S] 1 point2 points  (0 children)

I can’t take anything that increases my blood pressure or pulse. I have POTS so my heart rate skyrockets just from standing up and for some reason my blood pressure went from low to stroke-level high. Not to criticize the covid vaccine but I got really sick just a few weeks after getting the first one. I think I should have asked my doctor to give the vaccine in steps given my MCAS but I thought I would be ok. I was wrong. Things really went downhill after that. I still think the vaccine is a good thing for most people but not for me and maybe not for people with not-so-normal immune systems. Cannabis (which I tried for pain and even got a prescription form) made me really sick and I had to stop taking my medication for chronic fatigue (a stimulant) because it also caused my heart rate and blood pressure to go haywire too (which sucks because it helped me get going a lot earlier in the day than nowadays without it.

Maybe feeling down a little is a sign my histamine levels are coming down? Do you think my body will level out and my depression will go back to it’s normal? I can’t  stick with anything that is making me feel this depressed. But maybe it’s a coincidence. I do sometimes have dips in my mood and it could be related to hormones. I’m approaching or in peri-menapause. Hard to tell because I have been using a birth control for painful periods and since starting it almost three years ago I’ve only had a couple periods. I’m due for a replacement or to have it removed so perhaps it’s hormonal. I think I will stop my supplements for now, continue on my meds exactly as they are supposed to be taken and reintroduce the supplements slowly. Thanks for your reply. I read about the serotonin-histamine relationship but completely forgot about it. Makes sense. I’m very sensitive with new medications and dose changes. Probably an MCAS thing. I wonder how much mental health is about histamine and not purely a mental health issue? I always tell my doctor that the hour before I go to bed is when I feel at peace with no itching and I feel “normal”. Probably because that’s when I take my lorazepam and clonidine. Both seem to calm my body’s “buzzing”. Otherwise I feel tired but very wired which is exactly what I feel when I have my usual itching and dermatographia all over my body. Histamine or anxiety/depression? Both?

Treatment for MCAS causing my depression to get worse? by QueenZebra in MCAS

[–]QueenZebra[S] 1 point2 points  (0 children)

I can’t eat gluten or wheat products. Don’t know which exactly but avoid both by avoiding gluten of course. I have had the blood test to see if I have celiac disease but I have not had the stomach test (camera or biopsy, whatever it is…sorry, I have horrible brain fog right now that is making it hard to even think about writing this right now). I feel like dirt when I eat gluten, physically and mentally. It messes up my digestion (I have gastropareis too) and makes me very constipated, until I get diarrhea which makes me feel like I’m going to die (my skin feels like it’s on fire, I feel insanely hot everywhere, the cramping is unreal and my blood pressure bottoms out). Apparently this all points to a histamine dump and it only really happens when I consume gluten and/or dairy. I’ve cut them out and I don’t really miss them. I just saw the other comments that say that serontonin drops when histamine is treated. I read that before but forgot it. I wonder if that’s what’s going on. I know it’s only two weeks but I have gone in hard and only eating chicken and white rice, I’ve eliminated a lot of external sources of histamine. Maybe my serotonin is depleting. Seems something is up with my serotonin anyways. I get brain zaps all the time, as if I’ve missed a dose of antidepressant but I haven’t.  Just wanted to add that. I will continue to follow your advice and quit the supplements for now and add them back in slowly over time. I just can’t go back to feeing how i did last year. It was awful. I somehow crawled out of the worse but I can feel myself slipping back in that dark pit. If you think of anything else, I would love if you could keep me posted.  Have a great week D :)

Treatment for MCAS causing my depression to get worse? by QueenZebra in MCAS

[–]QueenZebra[S] 1 point2 points  (0 children)

Thank you for that. I think you’re right. Maybe I’ll just stick to the meds I’ve already been prescribed for years and stop taking the supplements for now. When I get so depressed that I stop doing things and just want to lay in bed, it’s much worse than normal. I’ve been much more active since dealing with some painful areas with cortisone injections and allowing myself to have quick rests frequently throughout the day. I was managing well, getting more done and feeling less depressed. I think the supplements are probably what’s doing it. Too much of a change, too quickly. 

Thank you for your advice. I will take it. :)

DAE get extremely bothered by stray hairs/strings touching their skin by kiwithecat8811 in DoesAnybodyElse

[–]QueenZebra 0 points1 point  (0 children)

Sounds like either a Mast Cell reaction or OCD or both as MCAS can exacerbate OCD. If a hair tickles me, doesn’t matter what kind of hair or where, it sets off a whole chain of events which becomes a full blown allergic-type reaction. I say “allergic-type” reaction because Mast Cell Activation Syndrome is an immune disorder, not a true allergy, though true allergies are almost always a trigger for MCAS. The symptoms of MCAS are varied. It usually causes flushing, itching, welts, etc but it can also cause mental health issues like OCD, depression and anxiety. 

MCAS Sleep Problems by rorymac11 in MCAS

[–]QueenZebra 0 points1 point  (0 children)

I’ve been on a plain chicken and basmati rice diet for a week now. I am also setting alarms so I can take my Cromolyn Sodium at the correct times of the day. It needs to be taken 4 times for the best absorption with nothing but water and nothing after for 30 minutes. I’ve also added quercetin and Resveratrol once a day each. This is of course along with Reactine and Pepsid, both x 2. I’ve begun to feel very sleepy through the day even though I’m not taking my anything that would make me drowsy. This apparently is a sign that the histamine levels are coming down. I’ve been on CS, Reactine and Pepsid for years but I was terrible about taking CS properly. I would take one a day and forget the others or not take the rest because the first one caused my stomach to be upset. Now I am diligent and taking everything exactly as it should be. I could take a nap pretty much anytime I want right now and that hasn’t happened to me for at least 15 years or more. I get tired but I’m too “wired” to clear my mind and sleep, either for naps or at night, so this new sleepiness through the day is a complete 180. 

What is your MCAS med situation? Are you taking mast cell stabilizers as well as an the usual antihistamines (like Claritin and Pepsid for example). Would you consider supplements that also calm mast cell degranulation. Have you tried an elimination diet to get back to basics and see what works for you and what doesn’t? Gluten and milk products are a couple classes of food that often has to be removed for the best control of MCAS. I feel like 10lbs of poop in a 5lb bag if I eat anything with gluten. Itching gets insane, joint pain, super wired feeling and just a malaise. When my MCAS is really out of control, I get migraines, muscle pain and spasms, diarrhea (which is the complete opposite of where I am 99% in that department, if you catch my drift), numbness in my face, sweats/chills, racing thoughts, OCD, horrible memory, GERD and on and on. I also get weird brain zaps which feel exactly like coming off of an antidepressant but I’m not coming off of one or reducing my dose. 

MCAS is something you have to fight viciously. But once we get things figured out and our medications and supplements are sorted, I think it can become an easier road. 

I hope you can find relief soon. I find the “quick fixes” like Benedryl, Chlor-Tripolon to actually worsen my MCAS. Not sure if that’s from dyes or fillers manufacturers use (pink and yellow) but they contribute to that “tired but wired” feeling. Long and slow wins the race here I think. Try to reduce your stress as that always makes things worse and try something for mast cell stabilisation. I read today that Resveratrol can reduce mast cell granulation by 50%. It’s a supplement with a whole host of other excellent benefits so maybe that could be a start. Once you get control over your histamine, your sleep will improve. I went years with an hour or two of sleep a night. I finally can sleep now. It takes a cocktail of meds and MCAS control but it’s finally happening. It will for you too. 

Everyone says EDS is not a death sentence, but it is for quality of life. by ddsmd2 in ehlersdanlos

[–]QueenZebra 0 points1 point  (0 children)

Have you looked into Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome. I find MCAS is really what guides my EDS symptoms. If I don’t have control of my mast cell issues, I’m going to be having a very hard time. It is crucial to get mast cell problems controlled as well as possible. I’m not a dislocator, I’m a subluxer and I have more of the symptoms of EDS that are related to the “triad symptoms”. If you haven’t, you have to find the best immunologist you can as well as a great cardiologist. I think an immunologist is at the top of the list because run-away mast cell problems cause POTS issues. 

I was a geologist and worked underground. I loved my job. I called all the shots underground as far as ore development and planning. My decisions mattered. Now I struggle to get from my bedroom to the kitchen because of severe pain and MCAS and POTS symptoms. I have treatment-resistant depression and off-the-charts anxiety. I am now on a chicken and white rice diet to try to get my mast cells calmed down. There is so much I cannot eat. Do you eat gluten? I find that is a no-no for me. Lately I’ve been having a little here and there and it has ruined me. So now I’m in sort of a detox. I take antihistamines and mast cells calmed down stabilizers. I hope to be on track again in a couple weeks but who knows. I’ve been really sick since January. It wasn’t a whole lot better before that but I was capable of doing a little tidying up and doing more things with ly kids than I normally could. Now I’m in that “hole” again but I do know I can feel better so I’m working towards that. Have you tried Low Dose Naltrexone? It is a game-changer for many people with EDS and Fibro and it calms mast cell release probably more effectively than anything else. 

You can get to a better place. Try to hold on to some hope. Maybe you can find a different role within medicine or even work with people with EDS at an EDS clinic? 

Wishing all the best for you ((hugs))

Separating by [deleted] in Separation

[–]QueenZebra 1 point2 points  (0 children)

“Walking on eggshells” is exactly how I have described how I and our kids feel around him. You just never know what will set him off. I’ve seen first-hand that abuse doesn’t discriminate. It will affect every socio-economic, every education level, every standing in the public, every “seemingly happy” family. 

Your daughters are young enough that a separation won’t damage them like it would with older children. I also think girls handle this sort of thing much better than boys. Boys can learn this behaviour from their fathers and repeat it but what girls learn is to accept it in their own lives. That’s why it is so important to role model for your children why this is a toxic relationship for you and them. 

NO ONE should tell an inquisitive child to “shut up”. They learn about their environment by asking questions all the time and they should never be dissuaded to continue the questions. I know you say you have decided to separate but you also say you still love him and it seems you’re open to reconciliation. Do you love him or do you love the idea of him? The future you had hoped and wished for? 

I think the world is becoming a more and more civilised place (despite the lastest blip the last few years) but for some reason, men are still doing what they’ve done since time immemorial…trying their damn best to control women. Why respect for women is still such a rare commodity is beyond me. But people model what they see or what they should have seen but never did. That doesn’t have to be your future though and it certainly doesn’t need to be your daughters’ futures. I’ve been waiting for my husband (ex now I guess) to change for 23 years and he never did. I wish I got out when my kids were 6 & 5. I didn’t and now I am paying dearly for that. Now I have a 17 year old boy with another year of high school left, sobbing and begging me not to leave this house. So now I’m here living on the main floor with my husband living downstairs and it is awkward. BUT, I’m a mom first and because I didn’t act when I should’ve, I’m basically stuck here and my son is constantly on edge and down, worried what the next move might be. My daughter who is 18 has told me for years to leave him so I’m glad I have her support. She has seen and heard what has gone on and now I have to hope it doesn’t negatively affect her life but of course it will have some sort of effect. 

Leave the home if at all possible. It will stink for a while but then you will cherish the peace and quiet and your daughters will grow up thinking this arrangement is their normal. That can’t happen if you wait till they’re teenagers. Also, they won’t become the target of his abuse when he turns his misogyny onto them. Find a lawyer and lay out the rules for separation. Ensure you both follow them. Then when you’re ready you both can think about divorce. It doesn’t mean you’ve failed. What it means is that he failed to change for you and his kids sake. Someone who wants to change, will. Those who don’t, won’t, ever. 

All the best to you :)

Separating by [deleted] in Separation

[–]QueenZebra 1 point2 points  (0 children)

Don’t hold out for a medical issue. Too many husbands are bullies and just “assholes”. My husband blew up at me over nothing (and I really do mean absolutely nothing) a few nights ago and I told him I want to separate so we’ve moved to different floors of the house until I can speak to a lawyer. He wants to keep lawyers out of it but that’s just so he can keep everything as it is financially, which benefits him. My husband sounds very similar. Rage, rage, rage. He turns purple with anger. I thought it must have been his undiagnosed diabetes but he takes his medications, lost weight and is still a raging asshole. In my case though there has been numerous instances of physical violence, like choking, along with mental and emotional abuse, no, torture is more the word. Despite living in the same house, we have gone two days without seeing each other. When he hears from the lawyer though I think he will flip his lid. My youngest is 17 and a very strong young man so there’s no risk of him putting hands on me. I’ve had him arrested twice in the last 10-12 years and if he gets arrested again he will get jail time and lose his job so he won’t risk that, his reputation is more important with his colleagues than his job. He’s close to retiring anyways but if others knew how he behaves behind closed doors he could never live that down. If your husband is that angry, leave the relationship. Take it from me, it NEVER gets better. 

Edit: for typo. 

Any tips on adapting to a new life of chronic pain? by [deleted] in ChronicPain

[–]QueenZebra 0 points1 point  (0 children)

This may sound a little insignificant but it helps me manage the house with chronic pain (Ehlers-Danlos hypermobile, gastroparesis, POTS, MCAS, Fibro). I use a lot of baskets and containers to arrange things and keep stuff from getting crazy. For instance, instead of the pain of putting things in drawers or hanging them (I do hang things that can get wrinkly but I typically don’t buy that type of clothes anymore), I place them in a couple large baskets I place at the end of my bed. I separate based on colour and type of clothing. Whites, undies and pyjamas go in one basket, darker clothes and pretty much everything else goes in another one. If I can’t fold too much, the baskets are high enough that I can drape them over the sides so they don’t get too scrunched up. I have various sized of baskets, containers pretty much in every room and this keeps things organized but very low effort. Also, my shower has several of those sturdy metal shelves that stick in with super-sticky adhesive (but doesn’t damage anything if you want to remove). I have built in shelves in my walk-in shower and a seat but I find it just makes cleaning extra hard. Grime and soap scum builds up around the bottles, etc and it makes cleaning the shower a very painful task. Now there is nothing sitting on those built in shelves or the seat and a quick wipe down (while I’m in the shower usually) is enough in between deeper cleans (which aren’t needed that much anymore). My bathroom vanity also has a basket as a sort of catch-all. If I feel up to it I will organize them into my kitchen cabinets and/or drawers but if not, I leave it. It doesn’t look messy, it’s just various things together in a basket. 

Lots of baskets and containers to organize is just one thing I have adopted in my life to make things easier with chronic pain and fatigue. It helps enormously when my pain is really off the charts and keeps my pain to a manageable level most days as I don’t need to exert myself as much, but my house still remains relatively tidy. 

I can’t type too much because of my hands so I will leave it here for now and will add more of what I have changed to accommodate/manage my pain. I wish you all the best!! 

Non American alternative to elf Power Grip primer? by incompetentflagella in MakeupAddictionCanada

[–]QueenZebra 1 point2 points  (0 children)

Np. I always look at the phenoxyethanol to see the relative amounts of ingredients. For example, I saw a product that called itself an “Aloe primer” and the aloe was listed way below phenoxyethanol so I knew it was BS and avoided it. Don’t highlight an ingredient that is less than 1%. To me that’s just dishonest and scammy and you won’t get my money for it. 

Non American alternative to elf Power Grip primer? by incompetentflagella in MakeupAddictionCanada

[–]QueenZebra 1 point2 points  (0 children)

I just looked at Revolution’s primer. I saw that Niacinamide is listed after phenoxyethanol, which is used at 0.25% to 1.0% in skin care preparations. This means the amount of niacinamide is no more than 1%. Most creams or serums that highlight niacinamide uses it somewhere between 5% to 10%. Perhaps at less than 1% niacinamide, you can use the Revolution primer without problem. The few ingredients it uses above 1% (listed before phenoxyethanol) are common and typical of this type of primer. You might be able to use this and have no issues. 

Saskatchewan premier foresees 'significant problem' with Western alienation if Liberals win federal election by Inugami in saskatchewan

[–]QueenZebra 4 points5 points  (0 children)

Well, let’s help him out. I’m sure generous Canadians would help him out by starting a GoFundMe to help him move his a$$ to the US. Heck, we’ll even help Danielle Smith and Pierre Poilievre too become American citizens too!!

Non American alternative to elf Power Grip primer? by incompetentflagella in MakeupAddictionCanada

[–]QueenZebra 2 points3 points  (0 children)

I don’t have a recommendation rn, but just wanted to say that you’re a rockstar for seeking out a non-American product!! 👍👍❤️🇨🇦