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    •  
      CommentAuthorRed
    • CommentTimeOct 23rd, 2017 5:59pm (Oct 23rd 2017) edited
     

    Keeper of the hens

    Today is SUDEP Awareness Day.

    SUDEP is Sudden Unexplained Death in Epilepsy, and 1 in 1000 people with epilepsy will die from this. People who have uncontrolled seizures, who experience a lot of seizures, or who have tonic clonic seizures are believed to be at higher risk (1 in 130).

    There is no way of predicting when SUDEP will happen, it just does. The cause is unknown, but it's believed to be in part with how seizures affect your breathing or heartbeat.

    SUDEP terrifies me, and is just one reason I am so so desperate for the NHS to actually listen to me and diagnose me. Having on average 10-20 or 8-15 seizures a day depending on the CBD oil (but sometimes 60+), I need to know if they're caused by epilepsy, and if so medication to lower that rate...because I don't want to die. I don't want Lyle to wake up next to a dead body, and imagining how soul destroying that would be for him is so painful to me. I don't want to leave him alone :crying:

    The fact SUDEP is so unheard of (I knew so little about epilepsy before I started having seizures, and had obviously never heard of SUDEP) is incredibly sad when so many lose their lives to it...



    •  
      CommentAuthorKateb
    • CommentTimeOct 23rd, 2017 8:07pm (Oct 23rd 2017)
     
    I hadn't heard of this as a condition in its own right - thank you for raising awareness. The more it's talked about the more chance there is of some serious research.
    •  
      CommentAuthorchief chicken
    • CommentTimeOct 24th, 2017 5:55pm (Oct 24th 2017)
     
    Can you find out if there is any research going on and perhaps volunteer for a drugs trial? I'm going to be taken onto an asthma one. The benefit (apart from perhaps being given a drug that will help) is that you're usually seen by top people in the field. Might be worth exploring. SUOEP needs to be wider known; have they a publicity campaign?
    • CommentAuthorLynnW
    • CommentTimeOct 25th, 2017 7:37am (Oct 25th 2017)
     
    I know about the problem, as I have a nephew with horrible seizures that can't be controlled and live in fear that this will happen with him. I hope more people become aware of the problem.:face-sad:
    •  
      CommentAuthorRed
    • CommentTimeNov 3rd, 2017 3:09am (Nov 3rd 2017) edited
     

    Keeper of the hens

    CC they have their own awareness day, a research foundation, and all the epilepsy charities provide information on it too I believe. Lynn yikes, it's an awful scary thought. I hope they find something that helps him soon... What type of seizures does he have? I live in fear that my seizures will progress to tonic clonic, because that can happen with other types of seizures that are left untreated ):

    November is epilepsy awareness month!

    There are over 40 different types of seizures; I have ones where I'm aware but can't move, ones where I lose consciousness but appear awake, and walk/fiddle, and ones where I lose consciousness and fall to the ground. To show how epilepsy affects me, this is an app I started using on the 13th October 2017 to record my seizures (this was after the A&E trip where I had over 60 in one day). Since mid October I've had over 150 seizures.

    Seizures aren't just 'have a seizure then get up and go'; you're affected before and after every seizure, and can sustain injuries during too. After a cluster of seizures I'm usually out of it (talking nonsense, confused, wandering, lost etc) for over an hour, and I can have several clusters a day. My memory is hugely affected and nowhere near as good as it used to be, I forgot my parent's phone number, a number I've had memorised for 15yrs!! You live in fear of where the next seizure will strike and if you'll get hurt, you can't go anywhere on your own, and if Lyle has to leave me we're both scared. I can only rarely have days out with him, even just nipping to town for a few hours, and after days out the next day has to be a 'rest day' due to increased seizures...epilepsy is much much more than 'just seizures', and there are puerile out there who have it much much worse than me. There needs to be more education about epilepsy as members of the public and even medical staff are so uneducated.
      IMG_20171103_011911_888.jpg
    •  
      CommentAuthorchief chicken
    • CommentTimeNov 3rd, 2017 5:50pm (Nov 3rd 2017)
     
    Good grief, Red; you do so well to cope with all this. I do hope they are able to help you in some way. :heart:
    •  
      CommentAuthorRed
    • CommentTimeNov 4th, 2017 3:53pm (Nov 4th 2017) edited
     

    Keeper of the hens

    Thank you CC! :flowers:

    Got some sort-of-really-good-news from our complaint about the NHS today! I think I posted about when I ended up in A&E and the Dr's blamed my "seizures" (air quotes on their part!) on my mental health, and told my mum that no staff witnessed any of these "episodes" whilst I was there?

    Well after a huge battle on my mum's part, we got the results today - and whilst they've covered their own arses (because PALS isn't there to help patients, it's there to protect the NHS :001_tongue:) they have retracted their statement that no staff witnessed seizures AND that my seizures are as a result of MH :bigsmile:

    So this is HUGE! I now have medical evidence stating I have seizures, and that I need an expedited neurologist appt so I can start getting treatment for them!! Obviously it won't happen and I'll still be waiting months and months haha, but the fact it now says on my record that I have seizures is huge (:

    (Oh also I've changed my name, my legal name now is Dallas - Scarlet is no more!! Doesn't really make a difference on here as I'm usually referred to as Red anyway haha, but if you hear my dad or Lyle calling me Dally, now you know why :rolling: )
      nhscomplaint.jpg
      nhscomplaint1.jpg
    • CommentAuthorLynnW
    • CommentTimeNov 4th, 2017 8:09pm (Nov 4th 2017)
     
    OK, Dally it is then.. :face-smile: I hope this means that they are really going to do something to help you.
    •  
      CommentAuthorchief chicken
    • CommentTimeNov 5th, 2017 3:24pm (Nov 5th 2017)
     
    Good news - you're on your way now!
    •  
      CommentAuthorKateb
    • CommentTimeNov 5th, 2017 6:59pm (Nov 5th 2017)
     
    Do you keep a full diary at all? Can you identify the triggers? Take it with you when you (eventually) get seen. Is the hospital doing a direct referral to neurology or are they expecting the GP to psychically know without anything from them?! Something else you'll probably have to chase up.

    You do cope really well with life in general and I am in constant admiration of that. One other question-why Dallas? Just like it or is there some meaning?
    •  
      CommentAuthorRed
    • CommentTimeNov 6th, 2017 12:08am (Nov 6th 2017) edited
     

    Keeper of the hens

    Thank you Lynn & CC! :rowofhearts:

    Yeah, we've identified over ten definite seizure triggers and I have 5 A4 pages covered in notes about how I feel before, during, after, triggers, things that helped, things we've tried etc...all to show some poor Dr hehe. I dunno about the referral, they made it sound like they'd contacted my GP electronically, but it's not like we'd have any way of knowing. I'm in the process of trying to switch to a new GP surgery (out of area application), so I have fingers crossed they'll accept me & I'll get a helpful, compassionate new doctor!

    Hmm. There were so many reasons for Dallas, but I probably won't remember most of them as it was 6 months ago now!! I tried a few name's before finding Dallas, but they weren't right...then stumbled across Dallas and just knew it was the one (: It's unusual and sounds nice, like my birth name was. Dally is a cute shortening. The name's associated with one of my favourite books. It's a boy-or-girl name. AND it's associated with a favoured game character too :bigsmile:
    •  
      CommentAuthorchief chicken
    • CommentTimeNov 6th, 2017 6:13pm (Nov 6th 2017)
     
    Well to us ladies of a Certain Age, it instantly conjures up big hair and shoulder pads...but your generation weren't afflicted with the telly series!! :face-smile: I like Dally, it suits you. I should have changed mine when I got the chance...perhaps when we get to 18 we should all be given the chance to change our names!
    •  
      CommentAuthorKateb
    • CommentTimeNov 6th, 2017 7:48pm (Nov 6th 2017)
     
    Yes I like it too, but then I loved the name Scarlet as well! I saw a film last night called Jupiter Ascending (awful film, left it on for background noise only!) Jupiter was the name of the main female character and I thought that was a great name. People are far more creative now - still like the traditional names, especially for boys. Easier for a girl to carry off an unusual name I think!
    •  
      CommentAuthorRed
    • CommentTimeNov 7th, 2017 3:30pm (Nov 7th 2017)
     

    Keeper of the hens

    Haha, thank you Cc :bigsmile: :heart: Me and Lyle actually talked about that idea haha, getting a chance to change your name when you become an adult :rolling:

    I like obscure names for everybody! I think guys can own unusual names, but I guess I would given I'm dating a Lyle :tooth:
    •  
      CommentAuthorKateb
    • CommentTimeNov 9th, 2017 12:37am (Nov 9th 2017)
     
    I changed my name - I was named after an aunt with a very old fashioned name which was awful. My kids only found out a couple of years ago and none of my friends know my birth name!

    Can we still call you Red on here?! :heart:
    •  
      CommentAuthorchief chicken
    • CommentTimeNov 9th, 2017 5:44pm (Nov 9th 2017)
     
    What was it, Kate? Evadne? Ethel? Euphemia? Go on, spill! :rolling:
    •  
      CommentAuthorKateb
    • CommentTimeNov 9th, 2017 7:38pm (Nov 9th 2017) edited
     
    Nope, I'll share most things, but not this!! Euphemia is great though-lets start a campaign to bring it back! :wink:
    •  
      CommentAuthorDianeonWhidbey
    • CommentTimeNov 11th, 2017 5:45pm (Nov 11th 2017)
     
    Hi everyone. Think of you lots, even though I rarely show up here. Congrats on the new name, Dallas-Red.
    •  
      CommentAuthorRed
    • CommentTimeNov 15th, 2017 10:53am (Nov 15th 2017)
     

    Keeper of the hens

    No way Kate that's crazy!! How old were you when you changed it? My friend's middle name is Petunia and she always hated that :tooth: And yeah of course you can still call me Red on here ^__^

    Thanks Diane!! :heart:
    •  
      CommentAuthorRed
    • CommentTimeNov 15th, 2017 11:03am (Nov 15th 2017) edited
     

    Keeper of the hens

    We rang the GP surgery yesterday to ask if my GP had asked to expedite my neurologist appt, as asked by the hospital. The receptionist claimed that A&E never sent the instruction for her to do it, so it hadn't been done...but idk who's to blame given what a shambles it all is :rolling: Lyle had to fight for the receptionist to talk with him too, despite the fact we've taken TWO signed notes in saying he can speak on my behalf...I was actively having a seizure at the time as well, so good luck talking to me I'll probably either be talking about lobsters or swearing :rolling:

    As a result we have a phone appt with my dreadful GP this evening. Lyle's taken the form in as evidence that says A&E sent her a request electronically, AND a third consent form from me!! Both will be on the system for this evening though which should help.
    •  
      CommentAuthorchief chicken
    • CommentTimeNov 15th, 2017 4:22pm (Nov 15th 2017)
     
    Good luck, Red, I hope they can help you. :heart:I hate all this computerisation; it leads to all sorts of excuses, it seems to me.
    •  
      CommentAuthorKateb
    • CommentTimeNov 16th, 2017 7:07pm (7 days ago)
     
    You should contact the practice manager and ask her why the letter wasn't actioned. If the hospital believe it was sent electronically and they maintain it wasn't received there is a serious risk element that needs to be investigated.
    • CommentAuthorLynnW
    • CommentTimeNov 17th, 2017 7:26pm (6 days ago)
     
    I hope they are going to get their act together soon, Red. This is getting ridiculous waiting all this time to even get an appointment, let alone for them to actually do something to help you.:tearhair:
    •  
      CommentAuthorRed
    • CommentTimeNov 18th, 2017 4:04pm (5 days ago) edited
     

    Keeper of the hens

    Thanks CC!!! Kate, at this point I'm too scared to do anything else that could be seen as complaining...pretty sure they already see me as a crazy, physically healthy busy body :rolling:

    Thank you Lynn, and guess what? I HAVE AN APPT!!!! Hahaha I can't believe it!! It's early next month, that call from my GP really worked huh! :bigsmile:
    :gasp:

    I copied this from my blog and was wondering if anybody had any ideas...

    "Does anybody have any advice for phoning the hospital to ask if they can provide a room with dimmer lighting for me...? If I have to sit in a room with fluorescent lighting I'll end up having back to back seizures, and be unable to talk, think, feel sick, confused etc...any advice appreciated!"

    I feel like they're not gonna be able to do anything :/ It's a hospital so fluorescent lights everywhere, and health & safety doesn't allow all lights off (I know this from benefit assessments)...they refused to put me somewhere dim when I was at A&E, and the result was hours of constant seizures with me bawling my eyes out :crying: I'm keen to avoid that happening again ;)
    •  
      CommentAuthorchief chicken
    • CommentTimeNov 18th, 2017 5:16pm (5 days ago)
     
    Surely the person you are going to see will be well aware of the condition and its various triggers? Just write to or call the secretary and ask the question. Kate is the one to ask really. Good luck, cherub. :heart:
    •  
      CommentAuthorRed
    • CommentTimeNov 18th, 2017 10:28pm (5 days ago) edited
     

    Keeper of the hens

    Thanks CC!! Unfortunately only a very small number of those with epilepsy are photosensitive, and even then it's usually flashing lights or contrasting patterns...It's extremely rare people are as light sensitive as me. I know a few where certain fluorescent lights can cause issue, but with me ANY light causes issue and fluorescent lights render me unable to move. I'm just scared, I don't want the appt to desktop me and if I go in status again I'll probably be sitting in A&E overnight again :angry: Lyle said he's gonna phone on Monday and see what they say...

    Seizures have had me well and truly beat this past week, I feel like giving up...last Sat we had to cut a trip with my parents short, tonight we had to cut a trip with Lyle's parents short, and in the past week I've only been out twice as I've been so off...even then most days have had about 30 seizures, and one over 40. I feel so bad ALL the time, this isn't a life...I just feel so out of it and ill :thumbdown:
    •  
      CommentAuthorchief chicken
    • CommentTimeNov 19th, 2017 6:50pm (4 days ago)
     
    God, poor you. Stupid question, I suppose sunglasses don't help? Or glasses with different colour lenses like the ones that some dyslexics wear?:face-sad:
    •  
      CommentAuthorRed
    • CommentTimeNov 19th, 2017 11:14pm (4 days ago) edited
     

    Keeper of the hens

    Not stupid at all! :face-smile:I wear ski goggles with polarised lenses anytime I leave the house or feel bad at home...and you wouldn't BELIEVE the amount of knobby comments I get, from the public and even two GPs were less than understanding *rolls eyes*

    They've really helped though. With natural outdoor lighting and dimmer lighting settings they reduce my seizures by about 30% of what they would be. Even though I think they do help a little in bright (eg fluorescent lighting, banks, supermarkets etc) places, it's just too much for them and I still end up destroyed haha!
    •  
      CommentAuthorRed
    • CommentTimeNov 20th, 2017 12:18pm (3 days ago)
     

    Keeper of the hens

    Having such a crappy day, had a phone call with my 'work coach' for universal credit (I'm on the 'intensive work scheme', even though I obviously can't leave the bloody house never mind work!!) which was like banging my head against a brick wall - nice guy, just totally doesn't understand at all *sigh*

    THEN we called the hospital to ask about lighting for my appt, and were just told they couldn't dim any lighting and there was nowhere else I could wait before the appt...so now I just want to cry because that day's gonna leave me feeling so ill, and I'll be paying for it for a week after with higher seizures etc...

    To make it even worse the nurse we spoke to said we could have been referred for an appt at the hospital 10 minutes away rather than 70+ minutes, but that if we switch now it'll push our appt back so we can't........like, just why? :(
    •  
      CommentAuthorchief chicken
    • CommentTimeNov 20th, 2017 3:52pm (3 days ago)
     
    ...and why did she tell you, because that's bloody frustrating. How about - and this is weird - holding Lyle's arm everywhere and keeping your eyes closed behind your glasses? Then as soon as you're with the doc/nurse, open your eyes and let them see what it does to you.
    •  
      CommentAuthorKateb
    • CommentTimeNov 20th, 2017 7:57pm (3 days ago)
     
    You are correct Red, hospitals have to cater for the majority and it's very difficult to manage such a large facility for a small minority. However, it is ridiculous that they can't find a room where you can sit in darkness (the problem with that is you'd probably be forgotten)! What you need is an 'ambassador'. Try contacting the PALs team, or (and this is random!) do they have a chaplain that might be more sympathetic. Speak to the consultant's secretary - they must be aware of these difficulties. The complaint department - make it clear you don't want to complain, you just need some help. You just need to find a sympathetic person who will try so ring round and keep asking - I'm a sucker for a "I really don't know what to do I need some help" calls. Sadly it seems I'm a minority. As soon as you get in to see the doctor ask to turn the lights off - when Danny had meningitis, after 4hrs in a windowless room and rolling in agony it was the first thing the consultant did. They usually do understand!

    Everyone is entitled to patient choice. The GP should have offered you options, but TBH if it's a choice between 4 weeks and 70min journey, or 13 weeks and 10 min journey which would you choose? The reality is that hospitals have different waiting times and capacity, and the NHS don't have enough money to make it equal everywhere. Nursing staff don't understand how primary care and referrals work, so she should've either kept quiet or got her facts straight. I suspect her intention was to push a 'challenging' patient elsewhere so that she doesn't have to sort things out.
    •  
      CommentAuthorchief chicken
    • CommentTimeNov 21st, 2017 5:02pm (2 days ago)
     
    Solved it; get an appointment at Kate's hospital and give her an 'I really don't know what to do I need some help' call! But those were brilliant ideas, Kate, I hope Red can use them.