Cushings Disease - Products That Helped Me Cope
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- Опубліковано 23 тра 2024
- Hi, I'm Noura and I have Cyclical Cushings Disease! Subscribe to me for more information on cyclical cushings disease, how to test, how to get diagnosed, and follow my process as I head forward to brain surgery!
Follow my instagram: @chronicallyours_
Lots of love, and good luck on your journey!
Video by Ashley Marinaccio - Фільми й анімація
Yep my largest surge come at 9:45-10 each night and stay crazy high til after 12-1am. And during the day I am so exhausted I cannot physically function. Or even shower. Moon face and buffalo hump since 18 also - why in 15 years 3 states various Drs and an Endo who diagnosed me w PCOS not one tested cortisol? I only got a cortisol test after I demanded one earlier this summer after learning about Cushings online. FML and yes don’t even get me going on mental health. Been suffering since forever. Major depressive disorder, anxiety disorder, panic disorder, adhd, mania, bipolar (bipolar meds made me suicidal) and other meds never helped. Treatment resistant they say. Difficult patient. Drug seeking patient. Psych Patient. Hypochondriac prob suspected too lmao what a joke!!!! Let’s not forget my massive cardiac fistula and massive 2 aneurysms on my heart in 2016.
How
Did
No
One
Recognize
Or
Think
To
Test
My
Cortisol?
W
T
F
GPs, PCPs, family practitioners - these Drs NEED TO BE EDUCATED ABOUT CUSHINGS. If they were, we wouldn’t suffer for years, decades before a diagnosis. Also, think of my heart issues that were found incidentally in 2016, absolutely would have ruptured and ended my life otherwise. How many other women have left their young children orphaned because they died of a sudden cardiac event before their Cushings was ever even recognized!!!!!
UNREAL! Thanks for sharing honey. God Bless you!!!!
Also when my cortisol surges at night (10pm or a little before) I can physically and mentally feel it as it comes on and rises and rises. My entire moon face turns beet red and it begins in my cheeks but flushed out to cover my neck and ears most evenings.
Its been very validating to me, bc I’ve been suffering and going to Drs non stop for 15 with physical and mental and emotional pain, begging for relief and I’ve received none. I’m looked at and treated like a second class citizen.
Before my illness, I was thin and gorgeous too. Just like you. The way in which ALL treat me ill vs prior to illness is obvious, very clear and I’ve recognized it since it began 15 years ago! Strangers, yes but also everyone I love, too!
They all think I’m a fucking maniac, bc I am. But learning my brain and body has been marinating in toxic levels of cortisol helps explain it all.
I forgot also my severe back pain and spine degeneration, stenosis, L5S1 issues, 5 herniations, sciatica.
Prior to illness onset I was 5’8” 145lbs, approx size 6.
Since illness began: first 50 lbs in 18m. 145 to 195. Only change was I began the progesterone “shot” birth control quarterly injection. We suspected this was the cause, then diagnosed w PCOS. Nope. It wasn’t.
Now my jaw and teeth are even suffering, and I NEVER had teeth issues before. Everything has gotten so bad. I am currently today a FULL clinical presentation. Clinical and Biochemical verified just not the source. I suspect possibly cyclical, but unsure still.
Thanks for sharing. It just makes so much sense. I’ve felt so sick for so long. And no one sees me as a sick person. At all. My life has been devastated.
Thanks for the kind words ! I know it’s such a frustrating journey!!
I was just told by a Dr. a few days ago I could have Cushing disease. I was giving the 24 hour pee test & next is blood work. Thank you for all of your videos. This is really helpful & I’m trying to stay positive
Please keep me updated as I want to get tested soon and I’d love to know what your testing process will be like and how things turn out for you! I hope you get a quick diagnosis and treatment for whatever is going on soon
What did you say that the labs should test for with the 24 hour urinalysis? I really don’t want to waste time like you said. I have a 6 year old & his Dad was very abusive. So I’m all he has. My family isn’t very strong as well. I need to get this figured out hopefully sooner than later. Thank you for your help. You are truly amazing for making these videos. My profile pic was taken when I was pregnant & healthy. Now I have gained 50 lbs & everyone is looking at me like I’m a fat pig not ever being heavy & upset because I have no energy. I am so happy I now know why but people will always think that your making excuses.
Wishing you all the best! Have you gotten any results back?
I haven’t done the 24 hour pee test yet. I have a 6 year old & my Mom is in the ICU. She is the only person I trust with him. Hopefully soon.
@@1773lissa wishing you all the luck!
The most painful symptoms for me is the migraines and especially the buffalo hump 😢Thank you for sharing this with us. I would have never thought of the cooling mask.
of course! I hope it helps you
I found having a pet, blankets, and a mask, melatonin very very helpful. I concur. For the nausea I suggest the nausea kit and eating small meals no greasy or spicy foods and I have found that I bought a jar of pickled ginger and eat about the amount of a tablespoon along with my meals and it helps dispel the nausea and for me to keep the food down long enough, I can get nutrients in me.
melatonin i used to love but it can affect your cortisol so i stopped - ginger is my saving GRACE i love ithaha
God love and bless our furbabys yes .❤
For those who can’t take melatonin I like CBD or valerian root, my feet are stiff and sometimes they swell!
Relora can help too. The chills are from Hypothyroidism, which Cushing’s causes or makes worse. A Natural Desiccated Thyroid rx is better than Synthroid/Levo, such as NP Thyroid. Interestingly, although all doctors will tell you to take your thyroid medication in the morning on an empty stomach, it’s best to take right before bed.
I have Cushing's from being on high-dose prednisone (steroid) for a couple of years for Sjogren's Syndrome. I gained 60 lbs in 2 months, going from a size 7/8 to 18. I found anti-chaffing gel by Monistat to be worth it's weight in gold for those parts of you that now rub you raw, like your upper thighs and upper arms! I didn't even know that products like this existed! Or how I lived without it! LOL!
Also...Johnson & Johnson's CORNSTARCH baby powder with aloe and vitamin E!! Really helps under your now GINORMOUS boobs that you didn't used to have, on those hot, humid, sticky days of summer (underarms too)!
Those are 2 products I've discovered on my Cushing's journey that I can't live without!
Thanks so much for giving these tips!!!
Weighted blanket helps me out 💯.
Weighted blankets are the real MVPS
Weird im fairly certain that I too have Cushing syndrome bcuz I literally have everything that you mentioned that you have. The ONLY thing different is I am hot 🔥 all the time. I am constantly trying to figure out how to get cooled off. I cant go outside during certain times of the day and even then I have to be in the shade and then I have 3 fans around my bed, in my room in order for me to sleep with the windows open and sometimes ill even run my A/C if that's not enough.
Question- Has anyone ever told you that they suffer from being too hot when you say that you suffer from being too cold? I'm curious if it is normal for Cushing syndrome to be either/or, ya know 🤔 😉 thanks for being here. I appreciate your story and the inspiration 🙏 God bless 🙏
I will have severe hot flashes and be drenched with sweat. Most times I feel the coldness in my bones almost like when it’s winter but do have many hot flashes that are physically hard to handle throughout the day!
Most of the time, it's feeling hot! I do think the cold flashes are from me being on a low, and then I'm freezing.
I took a saliva test and it came back inconclusive because I had to go off my hydroxyzine and that caused me to itch really bad and I had to use cortisone cream. I did a pee test but didn't go off my hydroxyzine because my doctor didnt tell me to and it came back with no elevated cortisol. How can I go off my medication, do my saliva test, and not itch?
Hi! It says I haven';t responded to this so making sure - (thought I had) - are there any other mediciations you can use instead? You def should not be on something with cortisol if they think you have cushings - or any steroids.
I am getting the test done meaning blood work witch time is best?
11pm
Why do boobs grow? Is it because we are gaining weight. Mine have got bigger in 2 months.
It’s the hormone inbalance :/
I don’t know what you mean by a high and low. Can you explain?
Absolutely - you can also check more of my videos for a more indepth response, but if youre cyclical that means sometimes your cortisol levels are high and sometimes they are low - it depends on when your tumor is secreting. You have a cycle between the two, and its different for each person.
How did it go with the weight loss meds? Did you lose weight? Are you still on the pills?
im on a ton of mediciations, but none are weight loss right now. they're testing me for a possible reoccurance, so that could be why i cant lose weight right now
Why can’t you work with Cushings
Some people can! I couldn't. The fatigue was extreme, my focus was off, I felt sick and achey a lot of the time. It just wasn't possible for me.