Off tomorrow for a trip to London to the memory clinic.
2nd. time I've been, they want to do further tests plus I would like them to get to the bottom of why I find myself some nights 'choking'!
In my mind I have something stuck in my throat & I am actually having my last breaths!! I feel the same fear everytime it happens, I have had both son & hubby worried as they have both seen me during the choking moment. I dont always wake up at the beginning of them, its as if I'm in a deep sleep when they happen!! I've even been out of bed & at the top of the stairs & one of them has come to me & cant get me to respond to them as maybe I've still been asleep!!
It really is scarey & I wish they would make it stop
If anyone is in the area let me know & maybe we could meet, we shall be in costa's!!
This was a photo I took as I came out of the hospital!...says it all !!!
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Suzypawz
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Hi Sue Good luck for tomorrow and as sheena said let us know how it went would be really intrested to see if it works
Hi Suzy, Hope it all goes well at the clinic... Could what you are experiencing be a seizure of sorts? Not all seizures are tonic clonic (the major seizure we all think of) and many are very subtle- including just "blanking out" which would be an absence seizure. I ask because I have experienced both grand mal (tonic clonic) and absence seizures.
Dr Hughes mentions in his latest blog that 1 in 5 teenage idiopathic seizures are positive for APLs (I guess I am one of those 1 in 5!).
Please keep us posted and I will pray for good weather and a good result and some answers for you...
hi pawzs - boy it never seems to end does it, hope things go well and you get some possitive results, my thoughts are with you and your family. bfn jet
At first my doctor thought I was having panic attacks in my sleep inducing asthma fits in my sleep and put me on diziapam so that I was relaxed. But then I had to come off the diazepam as it clashed with another med. so now when it happens my husband wakes me, gives me a glass of cold water and we sit up leaning forward doing yoga breaths until it passes. But I often lay awake clawing my throat trying to hold it open so that I can breath certain that if I go to sleep I will never wake.
I have recently had recurrent miscarriage tests which have shown that I am affected by APS only during pregnancy. I have been having occasional choking during the night where I cough n swallow repeatedly for air. I am a little sceptical about the diagnosis only during pregnancy and having read this line of posts am more so now. I am new to the syndrome and a little in the dark. I get the odd dizzy spell, am always tired... Maybe this is common to everyday life!
It certainly is a huge question & an interesting one for many by the looks of things! why do I wake up coughing, sweating, often banging on the floor even before I'm properly awake or waking up already at the top of the stairs & always scared I'm not going to wake from them
Well.....it still hasn't been answered! on another post I did on 'Hughes support' the question of 'may I have fibromyalgia?' was asked quite often by others that have it! & wondered if this may be causing it?.......no doctor in London has suggested this to me yet even though there is a possibility I may have it as I also have other symptoms! my own doc' thinks there may be a possibility, (but I had to bring the subject up!) so he has put me on Amitriptyline to see how I got on. it has helped some of my symptoms but not the choking one, I dont do it as much but it still rears its ugly head every now & then & for no apparent reason. I am waiting for them to suggest it.....as I dont want to & then they say I looked it up 1st....because I did'nt!!
As for the memory side of it....more 'tests' were done where I had to answer questions of words they were showing me or finish sentences they start. The conclusion was what I suppose I knew they were going to say!! it could be down to stress, anxiety or maybe even the mood I may have been in today!!!!
I replied I was in a good mood! & everyone has stress! (but everyone doesn't have what I get!?!)...... I said it nicely
They want me to go & 'visit' ....'shrinks' that will ask me questions about what might be causing me 'stress' including coping with APS.....
I agreed I would do this but also said I felt I had quite a good attitude towards how to cope with things! but ok.
I think I was just hoping they wernt going to reply like 'shrinks' always do by blaming everything on depression or something that may have happened/or happening in your life rather than it could be medical?!! like they did just before I was eventually diagnosed with APS!!
I know they are only trying to help....but it's just in my head all the while....I've been there before!!
Going back in a years time after the visits to who they want me to see & see what happens then.
I just want the 'awakenings' to stop......recently they have been different & even done them with hubbys next to me....which yes.... has scared him half to death!! I thought they only happened when he wasn't there!
pawz they gave me tests when i told them of memory loss- totally lossing phone conversations, then having no problem with the very next [ long ] phone call. one dc. gave me tests very close to what you got, said i did just fine. so i asked -are these tests acurate, because it dosnt happen all the time. i cant pick and choose when i will or will not have trouble. some times i will be talking and lose total train of thought. some times it comes right back, some times not at all. this concerns me as i teach classes 3 or 4 times a season, dont know how i will do this season. maybe i will luck out ???? then i hear the same old [ we are afraid to prescribe you anything ] because the way your body deals with meds. also asked nuero about the zomings and sumatriptan , she was supprised i brought them up , i told her where i had heard of them [ but what do you think i heard ?????? ] you cant take them. ha bfn jet
I know I said the same the last time I went...one day can be totally different to another on how I do things! but what do we know?! shame you cant use those migraine tabs...I find they are the only things that touch my migraines.
I have been told off before now for listening to others on these sites....but without it I would still be in the dark with so much & feel soooo alone with many symptoms...that a lot of us actually get!
These sites are very important to us & keep a lot of us going.
I'm still organizing somewhere in Burton for whoever can come to join me for something to eat & drink & have a good chat, it will be great to hopefully get a few of us together
Hi
Just reading your blog and the following messages I feel that I should share my experiences.
My memory gets confused, usually my memory is fantastic - I have almost built my career on my memory and i practise using it. However sometimes it disappears and I have to make sure that I am carrying a note book at all times! it is so frustrating and makes me panic about forgetting things - which i am sure makes it worse. I have recently had a brain scan and i am still waiting for the results but nothing scares me more than the idea that this could be permanently effecting my brain (the money maker!).
The dreams - I have also suffered with this, nowheree near as frequently as you but i always thought that it was some kind of sleep pararolis or sleep apnia. I have a dream, or nightmare where i am convinced that if i don't move i am going to die, my breaths get shorter and i am convinced that this is it - i am about to die. However, i have come to the conculsion that as i am a heavy sleeper that something wakes up my brain but not my body so i am trying to breathe more deeply to escape (fight or flight) but it is still deeply asleep and breathing shallow sleeping breaths. This explanation is no good at the time but it helps to calm me down once i have woken up. and what's more i do thing it is linked to stress, not sure how though.
sorry, I know that this is no help but I thought that you should know that you are not alone and it is scary.
I hope the demons stay away and you sleep well and happily.
Maybe it is the same thing causing yours, mine, others? I really dont know
I used to think it maybe related to stress, but then I realised I even had it when I've gone bed after a great day, on holiday! all sort of different situations, I cant even pin point it to some food or drink causing it?!
Yes the memory side is frustrating!! sometimes I'll often laugh at it! but other times I feel so frustrated.....in London they said that I may forget things more as I'm trying so hard!?!! .........don't understand how they can come to that conclusion when I'm not aware when it will strike?!!!! I could be just having a laugh with friends & suddenly I'll forget what I was talking about or how to explain something.....so how can they come to that conclusion? hey, they're the experts!
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London appointment today
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