Or should I say morning? It's just past 4am and I'm back to being propped up in bed. It's so silly but I just feel scared. The 'laying down horrible feeling' has noticeably increased over the last 2 nights especially tonight. My whole body actually flinched with the jolt in my chest. Heart is pounding.. feel like I've got vibrating bubbles doing through parts of my legs, it feels horrible. I wish I could just ignore it but its stopping me from sleeping. Hopefully soon I'll just be so tired that I'll doze off sitting up.
I spoke with LBH last week as they called up about an appointment. The only drawback is that the next available appointment is (privately) in August. Apparently he's the best person to see so it will be worth the wait. The lady on the phone said that usually the case would be delegated to other members of his team but because my case is as it is, he wants to see me himself. I just wish I knew what to do in the mean time because I'm beginning to worry that it's building again. What do I do about work? I have no idea what's going on and there is no one at the moment that is going to make any difference as it all hinges on the August appointment. I think its clear to me that I can't smoke because it seems I go a bit strange close'ish to when I've had one. It's all so frustrating and I wish this bloody tinitus would shut up!
27th:
Loss of voice (24hs ish).
Pains in knees, legs, feet, hands, back.
Consistent pain on inhale/exhale ribcage and in upper back after laying.
Cold!
Strange circulation.
Problems laying down - horrible feeling.
Feeling of tongue swelling.
Patches of forgetfulness.
28th - 29th:
Worse problems on laying down - cannot sleep laying.
Pain in feet, back, ribs, legs and hands/fingers - seems to be getting worse.
Tired and cold.
Intermittent voice throughout day (voice seems to go when cold?).
Ache and sore.
Pins and needles in left toe (morning).
Dizzy.. headache.
I'm getting to tired to even think more at the moment..
Friday 27 April 2012
Wednesday 11 April 2012
April Update
It's been ages since I wrote. I guess I've been putting it off as so many things happen that at the end of it, I don't really feel like sitting here going over it all again.
In the end I didn't send the letters... yet. It's probably for the best while we're still trying to get to the source of the problems as it has the potential to cause a lot more stress.
Since my last update I've been back to Dr C (neuro) and Dr B. Dr C listened as usual but was unable to pin point anything specific based on the scans of the head. Even though on the previous visit he talked of testing the nerves (for numb patches and loss of mobility in foot/toe), testing the blood pressure and getting a recent MRI of the neck. None of that happened, so instead I had an angiogram done of the head. I know the head ones are fine! It's the neck I have the issue with, it's the neck that was the problem in the first place and only sorted itself out when the thrombolisis happened. Doctors don't seem to want to investigate it though. All I am thinking is that -if- something got clogged up in the neck, could it then lead to blocking off or limiting blood flow to the head and would therefore not show on scans of just the head? His suggesting was to go to the 'activation' clinic at KCL and see if one of the episodes can be triggered.. I'm not keen on this at all :(
Dr B (neuropsych) seemed more intersted in finding out what was going on and was trying to look at the bigger picture. He explained some things about my scans and letters which was really helpful. We talked over everything that's been going on and he began looking things up and asking me more questions. He believes that the cause is not pyschological and in light of that is referring me on to the Lupus and Rheumatism clinic in London to have that checked. It makes me feel so much better just to have something official that says 'no its not anxiety, you're not mad or making it happen in your brain'. So I guess, in a way I was lucky to see him but on the other hand, surely these checks should have been done at the hospital in the first place? Something like 15-17 attacks and 4 collapses in the space of 2 months and I have to wait this long just to be told that I'm not making it up in my head..
I'm glad to say that I haven't had any 'episodes' since that last collapse. The day to day symptoms are still there but I can put up with those now. My legs hurt.. I don't know why though, maybe from under use? Strangely enough, the voice problem is back again. I feel like a ballooning pressure in my neck and then try to speak and ..nothing comes out but a strained squeek. Lost the voice again for about two days straight and since then its been randomly coming and going.The circulation to my hands and legs is still wonkey and my heart rate still seems to be going nuts. It's worst really early in the morning or when I try to lay down. My ribcage hurts like it did when I had pleurisy years ago, but only on the left side. I know I shouldn't worry but when my heart is banging so hard and hurts, and the ribcage is hurting too, I get scared that it's just going to go 'pop' and there's nothing I can do about it. In my sensible non-paniced head I know it won't. So so so cold too. Last night was the worst night I've had in a while. Heart going so fast I didn't know what to do with myself, freezing cold no matter how many things I piled over myself and everytime I started to fall to sleep I'd be woken pretty much instantly with voilent muscle spasms - even whacked myself in the head haha. I think I've had about two hours sleep maybe but luckily I have audiobooks :D.
Going to try and go out for a walk later on. Might even be brave and go walk down to the garage to get the car back. I'll be so sad to see it go.. but with things the way they are at the moment I think it's safer that I go with an automatic.
In the end I didn't send the letters... yet. It's probably for the best while we're still trying to get to the source of the problems as it has the potential to cause a lot more stress.
Since my last update I've been back to Dr C (neuro) and Dr B. Dr C listened as usual but was unable to pin point anything specific based on the scans of the head. Even though on the previous visit he talked of testing the nerves (for numb patches and loss of mobility in foot/toe), testing the blood pressure and getting a recent MRI of the neck. None of that happened, so instead I had an angiogram done of the head. I know the head ones are fine! It's the neck I have the issue with, it's the neck that was the problem in the first place and only sorted itself out when the thrombolisis happened. Doctors don't seem to want to investigate it though. All I am thinking is that -if- something got clogged up in the neck, could it then lead to blocking off or limiting blood flow to the head and would therefore not show on scans of just the head? His suggesting was to go to the 'activation' clinic at KCL and see if one of the episodes can be triggered.. I'm not keen on this at all :(
Dr B (neuropsych) seemed more intersted in finding out what was going on and was trying to look at the bigger picture. He explained some things about my scans and letters which was really helpful. We talked over everything that's been going on and he began looking things up and asking me more questions. He believes that the cause is not pyschological and in light of that is referring me on to the Lupus and Rheumatism clinic in London to have that checked. It makes me feel so much better just to have something official that says 'no its not anxiety, you're not mad or making it happen in your brain'. So I guess, in a way I was lucky to see him but on the other hand, surely these checks should have been done at the hospital in the first place? Something like 15-17 attacks and 4 collapses in the space of 2 months and I have to wait this long just to be told that I'm not making it up in my head..
I'm glad to say that I haven't had any 'episodes' since that last collapse. The day to day symptoms are still there but I can put up with those now. My legs hurt.. I don't know why though, maybe from under use? Strangely enough, the voice problem is back again. I feel like a ballooning pressure in my neck and then try to speak and ..nothing comes out but a strained squeek. Lost the voice again for about two days straight and since then its been randomly coming and going.The circulation to my hands and legs is still wonkey and my heart rate still seems to be going nuts. It's worst really early in the morning or when I try to lay down. My ribcage hurts like it did when I had pleurisy years ago, but only on the left side. I know I shouldn't worry but when my heart is banging so hard and hurts, and the ribcage is hurting too, I get scared that it's just going to go 'pop' and there's nothing I can do about it. In my sensible non-paniced head I know it won't. So so so cold too. Last night was the worst night I've had in a while. Heart going so fast I didn't know what to do with myself, freezing cold no matter how many things I piled over myself and everytime I started to fall to sleep I'd be woken pretty much instantly with voilent muscle spasms - even whacked myself in the head haha. I think I've had about two hours sleep maybe but luckily I have audiobooks :D.
Going to try and go out for a walk later on. Might even be brave and go walk down to the garage to get the car back. I'll be so sad to see it go.. but with things the way they are at the moment I think it's safer that I go with an automatic.
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