Undiagnosed and rare conditions
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Living with a rapidly worsening medical mystery and need help

boyofwonderboyofwonder Member Posts: 1 Listener

It has been a long and mystifying journey and after six years of trying desperately to get to the bottom of my condition with no shortage of helplessness, finally it has lead me here. I want to first say that I am aware of how unusual the initial cause of this will sound. It was my birthday of 2015, I was just turning 16 when my life was altered by the sudden onset of symptoms that followed smoking with a group of friends. For reference, I was a teenager who had no prior experience to smoking weed or getting high, I was someone who wasn't too keen on it in the first place, but I was with a group of peers who recommended it to help me take an edge off. I didn't think too much of it other than this is what teenagers do and I felt comfortable knowing that it's considered a safe experience by most people. What I can dig up from memory is that the kids were smoking either a blunt or a bowl and trying to show me how to do it correctly to get a proper high. I wasn't too concerned with the whole how to smoke or what I was smoking stuff, so I just took their advice and listened to their suggestions. To make a long story short, I smoked well past my limits for a first timer and took an inhale that instantly made me feel as though I couldn't breathe and was going to choke to death. I felt fuzzy and extremely scared. I triggered the first wave of symptoms that I've been dealing with ever since. The first of which being something that causes me to feel a frequent hollow feeling in my airway that almost feels as if the smoke caused some damage to it. I don't know if that's possible or how to prove that it is, but all I can say for sure is that even though I breathe normally, it still feels like there's some sort of affect it had. Then there's the daily episodes fear, fatigue, panic and uncontrollable fight-or-flight symptoms like profuse sweating, a sensation of heat, a fast heart rate and intense trembling all over my body. In the six years since this incident, I have been in and out of emergency rooms and as with most medical mysteries, all my regular tests come back normal but the symptoms remain and don't cease. Sadly they have gotten so much worse with time. I have taken steps taken to treat it on my own with herbs and lifestyle changes to no avail. I feel malaise every day. The sad part is no one in my family believed me when I told them what I was suffering with, forcing me to live with it. For the first year or two after the incident and the symptoms developed, I began to adjust and live with them as best as I could seeing as no doctor could properly diagnose me and my family was fed up. I didn't want to burden them and I stopped fighting for an answer, accepting that whatever was wrong with me was not going to be known. With each passing year the symptoms have only gotten more pervasive and intense to the point where I am currently disabled because of them and unable to lead a quality life. It was such an unusual set of circumstances to have developed a condition like this from that for the longest time I was simply afraid to share my story and reach out to as many people as I could for help because I was deeply afraid of being invalidated and disregarded. Many doctors I went to were only addressing it as an panic/anxiety disorder and simply shrugging it off as a psychiatric condition, which only cemented my feeling of hopelessness in ever finding the help I desperately need to understand what really happened to me that day and why I deal with all these progressively worsening uncomfortable symptoms. What happens to me now through the day is I'll have rises and falls of the symptoms, my breathing will feel funny, I'll start to sweat and feel heat all over my body, I'll tremble and then I need to take a walk and give one of my close friends a call for comfort until it starts to subside. If anyone on here could help me investigate what the medical anomalies I have might be or point me in the direction of where I could more options to diagnose or treat it, it would be so greatly appreciated. I need so much support. I have not been able to live a single day in six years without thinking that this condition will shorten my life. Even though nothing came up from standard tests at the emergency room I know for certain that something is amiss and that the majority of these symptoms have some underlying physical factors that no one has been able to diagnose yet. To anyone who reads this, thank you for taking your time out to. I look forward to hearing from anyone with a new perspective or guidance on my condition. 

Replies

  • underdiagnosedunderdiagnosed Member Posts: 27 Courageous
    hello i'm sorry i can't shed any light on what may be wrong with you, but i know from experience how hard it can be when your family don't believe you. it doesn't mean that they don't love you. its possible that in time they may grow to accept it. i guess it may be hard for them to accept that there's something wrong with you, especially for a hidden condition without a diagnosis. i react to cannabis too. i had a neighbour with a serious habit, the fumes from his drugs infiltrated my home and made my condition worse. i kept having breathing problems and had to leave my home. it has a happy ending because my new home is so much better. i too have had problems getting medical professionals to take me seriously, but there are also some very good doctors out there. don't give up there are lots of good people out there who will believe you. its just a matter of finding them.
    its easier said than done but worrying won't help. distracting yourself with something you're interested in can help, as can talking to people and trying to look for the positives
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    If I have read your comment right you were smoking drugs 

    Do you know what your smoking  from what you have said  may be nerve and tissue damage and maybe damage to the sensorys in the brain that can cause panic attacks  memory loss fatigue  and feel like you don't want to do anything 

    If you know what drugs you were smoking then you will be able to look it up  and see the affects it can have andxwhat can happen to your body and brain

    This is from experience at working in boots pharmacy and my advocacy work  and experience of supporting a friend 
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    @boyofwonder I don't know if you have this in England  but you can ask for an appointment with a boots pharmacist  that you can talk to you about what you were smoking  it could of been cut with something as well 

    Also you can talk to a drug rehabilitation  center  who would also be able to help you concerning  the affects it could have on you 
  • Mia17Mia17 Member Posts: 1 Listener
    Look into 
    Low iron 
    low cortisol 
    Low blood sugar 
    dumping syndrome 
    vagus nerve damage 
    POTS 
    -to add these could be really long shots, but some of your symptoms match and it really could be it. Good luck! 
  • mikehughescqmikehughescq Member Posts: 6,574 Disability Gamechanger
    No-one on here can give medical advice as it breaches the terms of the site. So, my advice would be to go back to the beginning and review what you do know. 

    However, I have come across exactly these symptoms previously with several clients and, whilst you may be reluctant to accept the diagnosis so far, it matches cannabis psychosis in almost every respect. Most young people think physical symptoms must mean physical condition but that simply isn’t true. You shouldn’t feel invalidated or disregarded by this but it’s worth considering whether medical professionals really dismissed it as mental health related or whether it’s you that’s struggling to accept that and maybe want a physical diagnosis no matter what. Physical symptoms are not directly linked to CP but they do fall out of other aspects of it such as anxiety/depression etc. and thar lung feeling you describe also fits the latter. It’s very easy to dismiss medical professionals as disinterested or incompetent when all they’re really doing is waiting for you to catch up so they can start to have serious conversations about drug use; treatment; prognosis etc. 
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