I too get very (!) “fuzzy” logic/thinking during a crisis! I’ve learned I cannot trust my mind during an episode. Unfortunately I can sound quite convincing to relatives and friends saying I’m ok when I definitely not ok.
I think that's what I realise now post-crisis after hearing my family talk about it. I sounded entirely in control, but nothing I observed or thought made sense! It's one of the scarier aspects to me because I don't think I can be trusted to entirely advocate for myself because I tend to not want a fuss to be made (like an ambulance etc.).
My daughter has had Addisons for many years . As time has gone on she can quickly recognize the symptoms of low cortisol . For her it is nausea and stomach pain . .Great to hear you had an emergency injection with you . When my daughter feels she is at the point of needing going to the hospital she gives herself the injection first , as so many medical staff don’t understand how serious the condition. She has finally been has coded on her medical records at the hospital to give her IV cortisone . As soon as she enters the hospital , but again that is not always done ! I think in an emergency you definitely need someone with you to advocate what you need . Due to a lack of training and understanding of the condition . When her injections are run out of date , she gives them to family and friends to practice how to mix the injection ,so we are all able to give it . Do you carry an emergency letter to explain your condition ?
You're definitely right about the need to have someone with you! This experience taught me the importance of those things - I would have somewhat not believed how vital communication is! I have an emergency letter with me now!
Thank you for bringing awareness to this important topic! I am in the process of trying to see if I have Addison’s. I have almost all of your symptoms and honestly feel like I’m dying. It’s been 2 months of begging doctors to take me seriously. I’m barely hanging on. I did have a cortisol test this morning but it was a 43 which is high! I’m so confused as all of my symptoms align with adrenal insufficiency. 🤷🏻♀️ I’m so thankful for you sharing your story, thank you!
Oh, bless you. I'm having the hospital test for Addison's in two days time (U.K). Can't wait to get more answers. I wish you well and hope that you get to the bottom of things
I am truly hoping all is going well for you! This road, the road to diagnosis and all the comes after is so terribly overwhelming and demoralising. Thank you so much for using your energy to write your comment 💛
Have you looked at symptoms of Cushing's Disease? That can cause high cortisol. (I'm not a doctor so this is something you can ask your doctor about if you want to). I hope you get accurately diagnosed and properly treated asap for whatever is ailing you. Sorry you are going through this.
My daughter-in-law was diagnosed not long ago with Addisons'...she suffered for a long time, having no idea what was wrong with her...she had an adrenal crisis that put her in the hospital and that's when the doctors finally figured out what was going on with her. I've read it can take decades to get a diagnosis b/c symptoms don't usually develop until 90% of the adrenal cortex has been damaged. She's doing much better now that she is on meds but it's still hard for her..she's in her mid-fifties...has suffered for a long time...people thought she was lazy, unmotivated etc...over the years she'd had a lot of positive tests for TB..was told they were false positives...when she was in hosp. with the crisis and told they were going to test her for TB she told them she'd been tested over the years but they were false positives...the doctor smiled b/c that's when he knew he was on the right track. She is learning as she's living with her disease. I understand how hard it is b/c I've had undiagnosed vestibular migraine for decades..I'm 74 and only found out 2 years ago what had been wrong with me since I was a young child. I'm no exception...I personally know 2 other people with VM and there are millions like us. All the best to you in your journey. Perhaps you can help others by sharing it here.
Thank you so much for taking the time to write that and share it with me. I hope you and your daughter-in-law are doing well, and we can be at any point in our lives when managing such conditions! It's honestly so hard to reconcile the narratives we receive from other people about how we just need to wake up earlier, eat healthier, try harder, etc. It can be equally as hard to reconcile how long a diagnosis took, and all of the time lost. I truly wish you the very best.
Do you have MCAS too? MCAS/EDS/POTS often go together per NORD. I have all three and weirdly have Secondary Adrenal Insufficiency as well. I’m finding more people who have all 4.
I haven't been diagnosed with MCAS, but I do have medication for it as I seem to have a lot of symptoms, though not consistently. It seems to flare when my other conditions do (or when I'm stressed)!
Oh my goodness, thank you for sharing this!
I too get very (!) “fuzzy” logic/thinking during a crisis! I’ve learned I cannot trust my mind during an episode. Unfortunately I can sound quite convincing to relatives and friends saying I’m ok when I definitely not ok.
I think that's what I realise now post-crisis after hearing my family talk about it. I sounded entirely in control, but nothing I observed or thought made sense! It's one of the scarier aspects to me because I don't think I can be trusted to entirely advocate for myself because I tend to not want a fuss to be made (like an ambulance etc.).
My daughter has had Addisons for many years . As time has gone on she can quickly recognize the symptoms of low cortisol . For her it is nausea and stomach pain . .Great to hear you had an emergency injection with you . When my daughter feels she is at the point of needing going to the hospital she gives herself the injection first , as so many medical staff don’t understand how serious the condition.
She has finally been has
coded on her medical records at the hospital to give her IV cortisone . As soon as she enters the hospital , but again that is not always done !
I think in an emergency you definitely need someone with you to advocate what you need . Due to a lack of training and understanding of the condition .
When her injections are run out of date , she gives them to family and friends to practice how to mix the injection ,so we are all able to give it .
Do you carry an emergency letter to explain your condition ?
You're definitely right about the need to have someone with you! This experience taught me the importance of those things - I would have somewhat not believed how vital communication is! I have an emergency letter with me now!
Thank you for bringing awareness to this important topic! I am in the process of trying to see if I have Addison’s. I have almost all of your symptoms and honestly feel like I’m dying. It’s been 2 months of begging doctors to take me seriously. I’m barely hanging on. I did have a cortisol test this morning but it was a 43 which is high! I’m so confused as all of my symptoms align with adrenal insufficiency. 🤷🏻♀️ I’m so thankful for you sharing your story, thank you!
Oh, bless you. I'm having the hospital test for Addison's in two days time (U.K). Can't wait to get more answers. I wish you well and hope that you get to the bottom of things
I am truly hoping all is going well for you! This road, the road to diagnosis and all the comes after is so terribly overwhelming and demoralising. Thank you so much for using your energy to write your comment 💛
Have you looked at symptoms of Cushing's Disease? That can cause high cortisol. (I'm not a doctor so this is something you can ask your doctor about if you want to). I hope you get accurately diagnosed and properly treated asap for whatever is ailing you. Sorry you are going through this.
My daughter-in-law was diagnosed not long ago with Addisons'...she suffered for a long time, having no idea what was wrong with her...she had an adrenal crisis that put her in the hospital and that's when the doctors finally figured out what was going on with her. I've read it can take decades to get a diagnosis b/c symptoms don't usually develop until 90% of the adrenal cortex has been damaged. She's doing much better now that she is on meds but it's still hard for her..she's in her mid-fifties...has suffered for a long time...people thought she was lazy, unmotivated etc...over the years she'd had a lot of positive tests for TB..was told they were false positives...when she was in hosp. with the crisis and told they were going to test her for TB she told them she'd been tested over the years but they were false positives...the doctor smiled b/c that's when he knew he was on the right track. She is learning as she's living with her disease. I understand how hard it is b/c I've had undiagnosed vestibular migraine for decades..I'm 74 and only found out 2 years ago what had been wrong with me since I was a young child. I'm no exception...I personally know 2 other people with VM and there are millions like us. All the best to you in your journey. Perhaps you can help others by sharing it here.
Thank you so much for taking the time to write that and share it with me. I hope you and your daughter-in-law are doing well, and we can be at any point in our lives when managing such conditions! It's honestly so hard to reconcile the narratives we receive from other people about how we just need to wake up earlier, eat healthier, try harder, etc. It can be equally as hard to reconcile how long a diagnosis took, and all of the time lost. I truly wish you the very best.
Do you have MCAS too? MCAS/EDS/POTS often go together per NORD. I have all three and weirdly have Secondary Adrenal Insufficiency as well. I’m finding more people who have all 4.
I haven't been diagnosed with MCAS, but I do have medication for it as I seem to have a lot of symptoms, though not consistently. It seems to flare when my other conditions do (or when I'm stressed)!