When you sick all the time it's hard to tell what is an emergency and what is not an emergency, so don't beat yourself up about not going to the hospital earlier their was no way of knowing until you get tests
Completely agree. I too have had headaches on and off from various things, latest was needing neck and back realignment and I put it off for over a year cuz it would go away (and come back). I would just blame myself and poor posture and vow to do better.
That np sounds down right negligent I had a similar experience with my own primary telling me it was just my asthma and checked nothing besides my o2 sat and, when in reality it was a massive blood clot in my lungs progressively blocking off my ability to breathe, when we finally called 911 i had an o2 of 88 the paramedics were surprised i wasn't totally unconscious. I ended up in cardiac icu for a month and my surgeon was astounded that it wasn't seen until now. Obviously not going to that office anymore but still super angry even a year later while still trying to rebuild my strength and living through ptsd.
Please don't be too hard on yourself for not going to the doctor earlier. We all have internalized ableism that lies to us. I hope you are able to do better for yourself next time. Hope recovery goes well!
Fyi, not boring. We might have different conditions but I still find it really interesting to hear about it and see how you still live your life and find smiles along the way.
My mom's friend has that from her EDS and ends up in icu about 2x a year here in the USA. Hers are also spontaneous. I'm so sorry you had this experience 😔
I had a really slow recovery from a lumbar puncture due to EDS and its the most pain I've ever been in. I also thought I was going to die at one point, I was throwing up, shivering violently and my head was excruciating. I managed to recover on my own with enforced bedrest and IV fluids but they still don't know why I had such a poor recovery process because the LP was very straightforward and smooth. EDIT : basically also had a CSF leak, it's the most horrendous pain I've ever had. I've never watched anything I relate to more. You describe it exactly how I did back then.
A gp spoke to me like that when I was younger and as a result I have never been back to the doctors even though a couple of times I really felt like I needed help but after that experience I didn’t think they would believe me. It’s unacceptable for them to treat people like that!! People go in all the time for no reason but some people only go in a serious situation and they shouldn’t just assume we’re faking it
You are truly so inspiring to me. I started to follow you when I got very sick last year to show me you can get through anything and to find someone who understood how I felt. I’m finally coming to the end of a long road by getting my life back, living again and thankfully my medical conditions I can live with. You really are inspiring and amaze me every time I watch your video’s! I hope you feel much better soon and continue with the amazing positive attitude you have ❤️
Girl! Tell your body to knock it off and be nice to you! So glad you're doing better and I hope you can have some calmer days soon. Sending you love and hugs.
I was literally said csf leak when you said my headache is better laying down and my neck hurts. I had 2 csf leaks (4 blood patches: last one was with tissue glue and blood) last year. I pray to never have another blood patch but I saw the symptoms and your speech was how I was while sitting. I now have high pressure (idiopathic intrathecal hypotension) but most likely had it before and just didn't know it. I am currently on that med as well and it draws off extra fluid in your eyes to reduce the amount in body
Along with my FND I have IIH (the raised pressure) so sleep raised every night. I once had low pressure after a lp and it was awful so feel your pain for that and glad the 2nd blood patch worked for you. Keep up with the videos, only just found you but catching up and enjoying them x
I have IIH and papilloedema, IIH affects my optic nerve, my sight is deteriorating. Waiting for another LP. I understand how your both feeling. Take care ❤
Lucky that they treated you with respect because my nan was in my perspective the hospital killed my nan in my perspective but I'm so happy that you're doing so well xxx
Amy, sorry for all your pain - but you will feel better soon, because you are a strong fighter ;-) and Bob is on your way, and your family, and your viewers. Wish you all the best :-D
I have hydrocephalus born with it but was never treated as was a premature baby ( high csf pressure ). I have an untreated csf leak caused by a lumbar puncture so know how rough you would have felt I genuinely thought I was going to die when mine first happened as my head was literally pulsing and was violently sick, I have had one failed brain surgery to treat my hydrocephalus an etv they basically make a whole inside your brain to try and make the fluid drain better, try the medication you where given which is supposed to reduce how much csf you are producing didn’t work and felt even more awful with it , currently waiting on a date for surgery to get a shunt which drains the excess fluid away at a hospital in England under a world renowned neurosurgeon as I am too complex for Scotland 😢😂❤xx
I know exactly how you felt. I have Spina Bifida and I'm also in a wheel chairI I had lower back surgery and when recovering in a rehab place next to the hospital it looked like within 2 days I would go home but then all he'll broke loose I started to not feel well and during this time they though I was constipated and were making me rake all sorts of softeners to make me go. Nothing did anything so they gave me more .. this was around Thanksgiving by Christmas eve they were letting patients go home for the day so somehow with the way I was feeling and how numb I was I got into the car and went home for the evening when I came back to the hospital I found out while getting ready for bed that my back leaked on the bed from my surgery and you could see the leak dripping. The next day my doctor came in and put a few stitches in only to do it 5 more times until they had to take me back in and do more inside of the area they cut in the beginning. After 2 weeks from going back in I was able to go home finally 6 months later I woke up with meningitis and was in another hospital for another month .
You highlight one of the biggest problems with the way the NHS (UK) is heading re GP's and so called PRIMARY care etc.. I know and believe me Amy... lot of love coming your way because I KNOW how bad some things can get when some suffer auto immune issues / necrosis / statin related myopathy, polymyositis.. dysphagia.. Sjögren's syndrome ? Hypertension coupled with tachycardia.. blood clot on left calf ... swollen hands... C6/C7 compromised.. Ah yes Amy.. as for that GP ... the one who comes out to visit.. the one who called an ambulance but deemed it was NOT an urgent and anytime over 4 hours if they could take me into A and E... non urgent... the one who thanks to his 'wisdom' or as some would say '.. apparent lack of judgement'.. had me in A and E for over 5 hours whilst they did blood tests / ECG etc etc to discover to their horror that my situation was anything BUT URGENT.. borderline critical.. two hours on a trolley in a corridor before admission to the hospital ward... CK levels of over 11, 000 rising to up to 32,000 not forgetting blood pressure of 240/120 I kid you NOT... So, when you are in pain.. I feel for you because I know what that pain can feel like.. be so hellish.. let alone the most hellish of all when you suddenly realise that you have no choice but to rely on others.. even if they are good... its the moments when you realise that that SIMPLE task ... is now.. ?! Stay strong !
I really look up to you! I’m going through some stuff definitely not to your extent but you keep me going. I really really think your so cool! Keep it up ❤
You will get better soon Amy and I know what it is like to be in hospital for ages I practically live there. We had to go to London 😅to go to a hospital 😂❤❤❤❤ get better soon Amy you p are so strong 💪
I’ve had 3 cfs leaks and 5 blood path he’s and I’m allergic to anastetic it’s so painful bless u been through so much glad to hear your recovering now I love your RUclips videos Amy ur amazing from a fellow pots and EDD warrior ❤❤❤❤
Omg! Ok so i have an issue with my blood pressure as well! not the same issues but i had the same symptoms! The only difference is that my blood pressure dropped too far too quickly, so i immediately got nauseated and dizzy and then i was going blind (like TV static taking up my vision) and my hearing was becoming really muffled lreally quickly like i was being submerged under water. That all happened in a matter of a minute or two and then i had a full blown panic attack bc i thought i was dying LOL. Typically thats a sign the brain isnt getting enough oxygen. The only way i can fix it is by laying down, so gravity will get the blood to the brain since my blood pressure isnt high enough to on its own!
i really hope you put in a complaint about the nurse. that is appalling behavior. be kind and gentle to yourself it takes time. 1 year in my little boy is still getting the pressure issues. he had a vp shunt put in his skull to regulate. he was diagnosed with a brain tumour and had 1.5 litres of csf fluid on his brain. worst headache ever! not taken seriously by hospitals for 6 weeks till he was diagnosed with it and 48hrs to live.
Have you looked into cci/aai I'm not diagnosed yet because I live in the most underfunded county in Wales but I finally discovered it and it sounds alot like what's going on with me and possibly some of what's going on with you not saying it is I'm not a doctor or anything just of you want to look into it since I hadn't heard of it before
Why do they gaslit us like that though. If you ever get into a similar situation with that nurse, download a call recorder to you're phone before you call them. I follow you because Jenny shared you on her IG xx
That nurse practioner should be fired AND have her license pulled. If you would have listened to her she could have killed you. I'm not a health care worker and I know that. She was being lazy and didn't want to get off her ass and come in. If your facility does nothing to punish her you should sue. At the very lease turn her in for abuse because that is what ignoring you is. Stand up for yourself love. The next patient she ignores may not be as lucky as you
When you sick all the time it's hard to tell what is an emergency and what is not an emergency, so don't beat yourself up about not going to the hospital earlier their was no way of knowing until you get tests
Oh I agree with this totally.
Exactly
Completely agree. I too have had headaches on and off from various things, latest was needing neck and back realignment and I put it off for over a year cuz it would go away (and come back). I would just blame myself and poor posture and vow to do better.
That np sounds down right negligent I had a similar experience with my own primary telling me it was just my asthma and checked nothing besides my o2 sat and, when in reality it was a massive blood clot in my lungs progressively blocking off my ability to breathe, when we finally called 911 i had an o2 of 88 the paramedics were surprised i wasn't totally unconscious. I ended up in cardiac icu for a month and my surgeon was astounded that it wasn't seen until now. Obviously not going to that office anymore but still super angry even a year later while still trying to rebuild my strength and living through ptsd.
Please don't be too hard on yourself for not going to the doctor earlier. We all have internalized ableism that lies to us. I hope you are able to do better for yourself next time. Hope recovery goes well!
Fyi, not boring. We might have different conditions but I still find it really interesting to hear about it and see how you still live your life and find smiles along the way.
My mom's friend has that from her EDS and ends up in icu about 2x a year here in the USA. Hers are also spontaneous. I'm so sorry you had this experience 😔
I had a really slow recovery from a lumbar puncture due to EDS and its the most pain I've ever been in. I also thought I was going to die at one point, I was throwing up, shivering violently and my head was excruciating. I managed to recover on my own with enforced bedrest and IV fluids but they still don't know why I had such a poor recovery process because the LP was very straightforward and smooth.
EDIT : basically also had a CSF leak, it's the most horrendous pain I've ever had. I've never watched anything I relate to more. You describe it exactly how I did back then.
A gp spoke to me like that when I was younger and as a result I have never been back to the doctors even though a couple of times I really felt like I needed help but after that experience I didn’t think they would believe me. It’s unacceptable for them to treat people like that!! People go in all the time for no reason but some people only go in a serious situation and they shouldn’t just assume we’re faking it
You are truly so inspiring to me. I started to follow you when I got very sick last year to show me you can get through anything and to find someone who understood how I felt. I’m finally coming to the end of a long road by getting my life back, living again and thankfully my medical conditions I can live with. You really are inspiring and amaze me every time I watch your video’s! I hope you feel much better soon and continue with the amazing positive attitude you have ❤️
Girl! Tell your body to knock it off and be nice to you! So glad you're doing better and I hope you can have some calmer days soon. Sending you love and hugs.
I was literally said csf leak when you said my headache is better laying down and my neck hurts. I had 2 csf leaks (4 blood patches: last one was with tissue glue and blood) last year. I pray to never have another blood patch but I saw the symptoms and your speech was how I was while sitting.
I now have high pressure (idiopathic intrathecal hypotension) but most likely had it before and just didn't know it. I am currently on that med as well and it draws off extra fluid in your eyes to reduce the amount in body
Along with my FND I have IIH (the raised pressure) so sleep raised every night. I once had low pressure after a lp and it was awful so feel your pain for that and glad the 2nd blood patch worked for you. Keep up with the videos, only just found you but catching up and enjoying them x
I have IIH and papilloedema, IIH affects my optic nerve, my sight is deteriorating. Waiting for another LP. I understand how your both feeling. Take care ❤
Lucky that they treated you with respect because my nan was in my perspective the hospital killed my nan in my perspective but I'm so happy that you're doing so well xxx
We love u so so much hope u get better
Omg bless you I hope has been said to that nurse that first dealt with you as it’s medical neglect Hope your feeling better now xx
I hope your feeling better❤️🩹
That NP who spoke to you sounds incredibly unprofessional! Glad to see you getting slowly back to normal.
Amy, sorry for all your pain - but you will feel better soon, because you are a strong fighter ;-) and Bob is on your way, and your family, and your viewers. Wish you all the best :-D
So scary! Glad you’re recovering though
Hope you continue to feel better!
Omg you ok now. I hope ur alright get better soon 💓
Wow what an emotional time Amy ❤❤
I'm just so glad your ok now ❤️
I have hydrocephalus born with it but was never treated as was a premature baby ( high csf pressure ). I have an untreated csf leak caused by a lumbar puncture so know how rough you would have felt I genuinely thought I was going to die when mine first happened as my head was literally pulsing and was violently sick, I have had one failed brain surgery to treat my hydrocephalus an etv they basically make a whole inside your brain to try and make the fluid drain better, try the medication you where given which is supposed to reduce how much csf you are producing didn’t work and felt even more awful with it , currently waiting on a date for surgery to get a shunt which drains the excess fluid away at a hospital in England under a world renowned neurosurgeon as I am too complex for Scotland 😢😂❤xx
I know exactly how you felt. I have Spina Bifida and I'm also in a wheel chairI I had lower back surgery and when recovering in a rehab place next to the hospital it looked like within 2 days I would go home but then all he'll broke loose I started to not feel well and during this time they though I was constipated and were making me rake all sorts of softeners to make me go. Nothing did anything so they gave me more .. this was around Thanksgiving by Christmas eve they were letting patients go home for the day so somehow with the way I was feeling and how numb I was I got into the car and went home for the evening when I came back to the hospital I found out while getting ready for bed that my back leaked on the bed from my surgery and you could see the leak dripping. The next day my doctor came in and put a few stitches in only to do it 5 more times until they had to take me back in and do more inside of the area they cut in the beginning. After 2 weeks from going back in I was able to go home finally 6 months later I woke up with meningitis and was in another hospital for another month .
OMG?!? I hope youre doing better now! Jesus thats a lot!
God you never get a break. Hope that’s the worst over ❤
You highlight one of the biggest problems with the way the NHS (UK) is heading re GP's and so called PRIMARY care etc.. I know and believe me Amy... lot of love coming your way because I KNOW how bad some things can get when some suffer auto immune issues / necrosis / statin related myopathy, polymyositis.. dysphagia.. Sjögren's syndrome ? Hypertension coupled with tachycardia.. blood clot on left calf ... swollen hands... C6/C7 compromised.. Ah yes Amy.. as for that GP ... the one who comes out to visit.. the one who called an ambulance but deemed it was NOT an urgent and anytime over 4 hours if they could take me into A and E... non urgent... the one who thanks to his 'wisdom' or as some would say '.. apparent lack of judgement'.. had me in A and E for over 5 hours whilst they did blood tests / ECG etc etc to discover to their horror that my situation was anything BUT URGENT.. borderline critical.. two hours on a trolley in a corridor before admission to the hospital ward... CK levels of over 11, 000 rising to up to 32,000 not forgetting blood pressure of 240/120 I kid you NOT... So, when you are in pain.. I feel for you because I know what that pain can feel like.. be so hellish.. let alone the most hellish of all when you suddenly realise that you have no choice but to rely on others.. even if they are good... its the moments when you realise that that SIMPLE task ... is now.. ?! Stay strong !
Thank G-d you’re still with us, sweetie xxxxx
I have no medical training I heard headache stiff neck and I thought meningitis. I can't believe the nurse didn't take you seriously
I really look up to you! I’m going through some stuff definitely not to your extent but you keep me going. I really really think your so cool! Keep it up ❤
Hope you're ok 💖
3:14 haha me literally every time someone’s talking about egypt😂
You have so much strength 💪 ❤ 💛 💗 💖 💙 💪
I can't sleep upright either. Not even on an incline when i have a cough.
Some nurses practicner was so horrible I think ❤❤❤
Hey I have a cast too! I broke my wrist a few weeks ago but it is better
You will get better soon Amy and I know what it is like to be in hospital for ages I practically live there. We had to go to London 😅to go to a hospital 😂❤❤❤❤ get better soon Amy you p are so strong 💪
HOLLUP..
I HAVE EDS TYPE 3 TOO..
I’ve had 3 cfs leaks and 5 blood path he’s and I’m allergic to anastetic it’s so painful bless u been through so much glad to hear your recovering now I love your RUclips videos Amy ur amazing from a fellow pots and EDD warrior ❤❤❤❤
Omg! Ok so i have an issue with my blood pressure as well! not the same issues but i had the same symptoms! The only difference is that my blood pressure dropped too far too quickly, so i immediately got nauseated and dizzy and then i was going blind (like TV static taking up my vision) and my hearing was becoming really muffled lreally quickly like i was being submerged under water. That all happened in a matter of a minute or two and then i had a full blown panic attack bc i thought i was dying LOL. Typically thats a sign the brain isnt getting enough oxygen. The only way i can fix it is by laying down, so gravity will get the blood to the brain since my blood pressure isnt high enough to on its own!
i really hope you put in a complaint about the nurse. that is appalling behavior. be kind and gentle to yourself it takes time. 1 year in my little boy is still getting the pressure issues. he had a vp shunt put in his skull to regulate. he was diagnosed with a brain tumour and had 1.5 litres of csf fluid on his brain. worst headache ever! not taken seriously by hospitals for 6 weeks till he was diagnosed with it and 48hrs to live.
Strong and gorgeous girl hope you are a lot better now ❤
Have you looked into cci/aai I'm not diagnosed yet because I live in the most underfunded county in Wales but I finally discovered it and it sounds alot like what's going on with me and possibly some of what's going on with you not saying it is I'm not a doctor or anything just of you want to look into it since I hadn't heard of it before
i hope that you are alright now
i am getting there thank you ❤
@@amyepohl 💖
Sending prayers your way ❤️❤️
Why do they gaslit us like that though. If you ever get into a similar situation with that nurse, download a call recorder to you're phone before you call them. I follow you because Jenny shared you on her IG xx
NPs are either amazing or terrible. No in between.
That nurse practioner should be fired AND have her license pulled. If you would have listened to her she could have killed you. I'm not a health care worker and I know that. She was being lazy and didn't want to get off her ass and come in. If your facility does nothing to punish her you should sue. At the very lease turn her in for abuse because that is what ignoring you is. Stand up for yourself love. The next patient she ignores may not be as lucky as you
Is there any way you can add captions? Auto or not?
comment: I would be scared of having the chair lean so far back- I hate rocking chairs bc I'm scared they are gonna fall over
Have u found through fnd that you can get more I'll through stress? X
Hope u get more awners aswell xxx
Be honest, it was interesting it wasn’t boring
🤗🤗🤗🤗