Hi Everyone!

Hi Everyone! My name is Negeen, I am 22 years old and I just wanted to touch base with everyone here at headway. I am currently waiting on the results of my neuropsychological evaluation-so there is no "official" diagnosis yet. My theory is that I am dealing with a histotoxic hypoxia. I get scared a lot and the fear is incredibly distressing, but mostly so when I lose something or forget something. The memory and learning difficulties are the worst to deal with because they so permeate every day functioning. I am hoping to find great support on here and hope for a full future. I hope one day to get married, to have children, perhaps find a fulfilling job, but as of now the idea of even living independently seems like a distant reality. I hope to receive some encouragement and build great friendships! Good luck to you all on this journey.

29 Replies

  • Hello Negeen and welcome. I'm sorry you're experiencing these problems and I hope you'll soon have a diagnosis which leads to suitable treatment. Is your Hypoxia theory based on information from health professionals ? Also, when do you anticipate a formal diagnosis ? Regards, Cat x

  • Hi Cat! No I haven't yet been able to get a health professional to confirm that diagnosis. When I was in highschool I went on a one night extreme drinking binge all on hard liqour. Mind you, I was 90 pounds and 4 ft 11.. I passed out for 7 hours, literally passed out. And when I awoke my teeth were chattering, my whole body was shaking, and I couldn't hold my head up. Since then I have been having these issues learning new material and visual and verbal memory. Every doctor I talk to immediately kind of shuts me up and thinks it's a big joke that I believe the alcohol could be causing the problem. But it is not absurd to think that-it's called histotoxic hypoxia. I'm not sure why the doctors think it's not the problem. I hope it's not really, because I'm aware that once brain cells are gone-they're gone for good. I really hope I can live a normal life. I worry a lot that I won't be able to.

  • Cat, the neuropsychologist should be calling me in in about a week. So hopefully by the end of this month, I will have a clearer picture.

  • Please Negeen let us know what transpires after speaking to your neuropsychologist. x

  • Cat, of course I will. Can I ask you a question? How do you handle the memory loss? My memory lapses are so profound it has placed me in sort of a debilitating lifestyle. Unable to move forward with goals. I feel so desperate, so helpless, it is so inexplicable the array of emotions I currently feel.

  • Are you referring to 'short term' memory loss ? This is what seems to affect most people after head injury ; my long term memory is still in tact.

    I had a subarachnoid haemorrhage in Dec 2011 and for the first year I chose to believe that the forgetfulness was something I could overcome by sheer willpower. Of course it wasn't that simple and I gradually learned that it was a permanent problem.

    I now keep a notepad with me always.........I know that sounds really simple and basic but it's a reliable method of noting names, appointments or any other information which I know I will forget within minutes. I need to note important dates or points the minute I'm made aware of them, then check periodically throughout the day to be sure not to miss anything.

    It can be depressing sometimes but there's still too much value in life to let it bring me too far down. I think the most frustrating issue is when I'm trying to convey something which is important to me but can't find words..............it can be so difficult being lost for words which you've used all your life when you put great value on quality conversation.

    I give my brain lots of exercise with reading, memory games & crosswords etc and, who knows, things might improve with persistence. Cat x

  • Definitely in regards to the short term memory. My long term memory seems to be effected also but more in the sense that all of the short term memory isn't getting encoded and transported to long term memory. I keep my smartphone around all the time and I have a little notepad and calendar for all my important to do's and shopping lists. I'm still really at a point where I feel like this should not be happening to me and by indignantly protesting against it perhaps I'll somehow get my memory back. I know it sounds incredibly dull, but that's my coping mechanism I guess. It must be hard to struggle finding words, I'm sorry cat! I'm not sure how much of a problem this is with me, but it does help to read-even if I forget the book a week later. The brain is so fascinating. I'm glad you're not persistantly depressed about it-I hope that one day maybe I can get to that point.

  • Oh I think you will Negeen. It's a basic survival instinct to overcome anything which gets in the way of our aspirations, even though that may mean some adjustments or sacrifices along the way. I really believe that quality of life can be subjected to enormous compromises, owing to circumstances, and still be good.

    Oh and I too can forget a book's content after reading it but I think the visual & cognitive processing of the written word might well increase the capacity/elasticity of the brain, and so long as it's rewarding at the time of reading then that's a bonus.

  • PS Did your drinking 'binge' include any other substances, besides alcohol, to your knowledge. It sounds plausible to me, this theory of yours, but I would beware of fixing it in your mind; it's possibly something quite unrelated and may need further investigation. x

  • No it was just alcohol, but all hard liqour on an empty stomach of a 90 pound girl. I believe that if my friends would have called 911 immediately after I passed out-I wouldn't have to be dealing with this today. -but they just left me there.

  • i was left 9 days im a mess each hour goes more neuro things are possible mine yours differnt probs tho but after symtons some same a person gives me name on phone ive forgot end of chat there name

  • I don't want my quality of life to be compromised in any way really. I mean that is just awful. I live in the developed world, I should have every opportunity underneath my feet. But I don't. It's just absolutely maddening. I am so sad. The idea of never being able to be independent it's all very sad. I'm sure some people can blame it on me and say I deserve what happened because of my actions. But I was young and incredibly naive, perhaps there should be room for at least the slightest bit of compassion.

  • I believe there will always be compassion for such mistakes...........most of us have made them, especially when younger. But you might be making a bigger one by refusing to accept that health problems often require lifestyle changes and stubbornly sticking to the unfairness issue. This can only bring bitterness, regret and frustration.........no way to make a new start on life.

    But firstly you need to stop trying to pre-empt the situation by reaching conclusions which might well be far from fact. Wait for the diagnosis. It might transpire that you have a treatable condition and all this agonising has been for nothing. Wait and see, lovely Negeen. And afterwards, when you have some clarity, it will then be more appropriate to examine your feelings.

    Must sleep now. Night night. x

  • Thank you so much Cat :) Have a good night.

  • Negeen, when exactly did this incident with excess alcohol happen........was it months or years ago ?

  • It was years ago. But I have been having trouble since then. I just kept attributing it to failing at particular things vs having an actual problem.

  • The little I know of hypoxic brain injury suggests that the two main factors which determine the long term outcome for sufferers are a) the person's age........the younger you are the less likelihood of serious damage. b) The most serious cases arise in those who remain unconscious for 12 hours or more.

    What I'm trying to convey Nageen is that whilst you are completely negative about your future prospects, you're not allowing any room for optimism............something which has an enormous part to play in recovery. Pessimism can be a self-fulfilling prophecy; we really can 'think ourselves ill' and, although I'm not underestimating your suffering, I do believe that your thought processes might be having a detrimental affect on your health and exacerbating your symptoms.

    Does this make sense to you ?

    You're so young and I really do feel for you. x

  • You're right I guess Cat, I will try to be more optimistic.

  • Hey! I'm 22 as well, and I agree with your worries about the future. Finishing university is what concerns me most at the moment...

    You'll find loads of support here, I don't know much about what you have, but let me/us know if you need anything!

  • Has anyone told you that you might have histotic hypoxia?

  • Hi B_S_A! :) The neuropsychologist said it is a possibility, but he doesn't really know anything until he does the testing. For some reason, my neurologist is vehemently denying the possibility, but has not yet given an explanation for why he disagrees with that theory. Would you mind sharing your story with me? It's scary to be so young isn't it? I would love to finish college, I was going to school for a while, but it became obvious that my brain was not storing any of the information learned. How does your prognosis look?

  • I'll send you a message :)

  • Hi! Welcome to the forum. Looking forward to getting to know you. You have come to the right place; plenty of advice, encouragement and support here.

    Take care. x

  • Thanks so much!!

  • From what you've said it seems a likely outcome of a heavy drinking session and lowered levels of breathing and heartbeat. It fits nicely. The neurologists seem reluctant to put their name to it if it hasn't been well documented by medics at the time. My daughter who is a first aider was asked by a neighbours son to look at his friend, mum was away and he had some friends in and some vodka.He was unconscious and unresponsive to pain etc, His heartbeat and breathing slowed and she rang for an ambulance. They put him on oxygen and he was eventually OK. I guess it could have been a different outlook if she hadn't been there and they'd let him sleep it off.

    Have you had much support from people who know about brain injury? Like Headway, other people who have hypoxia?

  • Stardrop,

    Yea I wish my friend would have called an ambulance. But her mom bought the alcohol for us so no one made any phone calls. Actually it is difficult to find many people who have hypoxia who aren't somehow bedridden. The closest thing I'm finding to my symptoms are survivors of cardiac arrest. This is the first forum I've joined. I don't necessarily want to "jump the gun" because I haven't been formally diagnosed yet. But at this point my problems are so perceptible that I don't need a professional to tell me I have a problem. Most people who get alcohol poisoning go to the hospital-which is precisely why there aren't many recorded cased of hypoxia from alcohol overdose. It's so annoying trying to deal with a neurologist who won't listen and won't even explain why he does not think it's the alcohol. I think he may have a hard time also telling someone that whatever they're experiencing is an irreversible condition.

  • Hi Negeen...I have to say I agree with lovely cat...try not to jump the gun, dig deep and hang on until you get the results from the neuropsych evaluation ...and also be prepared that at the end of the day the report may indicate deficits (I will admit I sobbed like a baby when my report included that word) or areas of difficulty but still may not come up with a solid diagnosis or definitive cause.

    This is a frustrating thing for all concerned. Doctors do not want to pin labels on us that could follow us the rest for our lives and they are stuck trying to find a balance between giving false hope and the discouragement that comes with brutal honesty.Reality for most of us is somewhere in the middle and there are no set rules and no definitive timelines...we are all different.

    I can truly empathise over the memory issues - I have pretty much zero short term memory and have had to battle to find ways to manage the issues it brings.

    There are things I can't do since my injury but I have found I can do things I had never previously considered. There are things I can give up and replace with something else and there are things I refuse to give up on...its about picking battles.

    The brain injury journey is definitely a marathon and not a sprint ...but we get there eventually.

    Take care

  • In my opinion medics like to put people in boxes as it suits them and their purpose, not yours? We are all different. Don't think me fluffy fairies, however I do believe if you sit quiet for a while you will get your own answers. Gut feeling/gut instinct avoid at your peril. I do think everything including medicine has its place tho in emergency situations and where proven bones are involved. Keep positive it really is a friend. I know from my own experience of the other way! Take care and best wishes. X

  • Hi, I'm sorry for what you've been through. My boyfriend also has hypoxia ishemic Brian injury. Is this the same as yours? I was surprised as I was reading your post as my boyfriend seems in a much worse condition that yours. My boyfriend was in a veggie state, now they told us he is in a minimally conscious state. Do you have any recommendations pls? God bless xx

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