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It's not coming back , is it?


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I have been feeling so much better over the last few weeks. I have made some big steps this year like starting back at work and back driving and I feel I have been managing my pacing well. Things are on the up.

Then yesterday I woke with a heavy, dragging head. Really nasty one that made it hard to lift my head up. I dropped all my plans and did very little and went to bed last night and that's when my worry set in. I went off to sleep fine but woke with a start around midnight and an absolute fear of dread and a really stiff neck.

I got myself up slowly and went to the bathroom. Felt very dizzy and after a few hours of this broken pattern I took some nausea and Dizzyness medication that I have for such cases which were very common in early months. My hands and feet were absolutely freezing. these are all symptoms i remember from immediately post discharge. My sleep was broken and horrid.

This morning and I have that hangover feeling and a very stiff neck and lower back and there's a horrible niggly thought that says what if the coil has shifted and I've got a small leak? My rational head keeps saying its ok, my emotional one is not joining in, how do I get it to?

I read the ' what happens to us' thread today and know that the sudden return of a symptom is probably going to have set off some deep anxiety. I have been planning to go back for some counselling as I really want to not get panicked by symptoms rearing their ugly head and I never was an anxious person prior to SAH. Thing is I don't even know I am worrying, does that make sense? Then boom it just takes over. But it's been a while since I have felt this bad.

Thing is I have so many unknowns that are pretty scary. A neck on my coiled artery which they can't add more to, it would need stenting. Another berry anneurism. A VP shunt that could block. Managed high blood pressure. Most of the time I try not to worry about this, so was last night just my sub conscious kicking me?

. Need my BTG friends advice.

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Daff,

You my darling have done so much in so little time. I am amazed that you do not have this happen every other week. Honestly, I am surprise. Most of us are on a roller coaster ride and it is bad and forth. I am often delighted by my young co worker with a 2 & 3 year old - and she has not slept in years now- that she has many of the same slurring of speech etc. and does similar things because of her fatigue.

I would mention it to your doctor but in my case I have just crashed and need to rest for several days. I cannot like you get my pacing down. I almost have to use it when I have it or it is a day I can get much done wasted. I worked too hard the past several days and several days last week. Yesterday I was mean, tired, I could not comprehend my husband’s medical issue as my memory of that was purged out of my brain at some point. I mean I was think I lost my memory on this giant issue and not sure I did not. I was really freaked and yesterday he sat me down to explain it to me and I still have no memory of going to the doctors with him knowing his only kidney is only 45% healthy. *&*(^)% think I would of known this?

I think you are doing great. Also I asked the girls the other day if they ever have cold hands and feet. I swear I if I am tired they are freezing and I am wearing fleece socks right now. If I am colder than my thin fit husband I know it is me and I was seriously wishing I knew exactly where my mittens were last night while watching TV. If I had the energy I would of gotten up and looked for them.

My life for years has been a roller coaster and it continues make me ask if this is normal? I think you have been a wonderful student of recovering from all of this. You seem to have done everything perfectly. It knocks you off your feet when you have a spell but I think it is normal. I think I would at least follow up with doctor just to have it recorded in chart for future if needed.

Hope your day gets better today. Rest up today. XOXOX maryb

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Hi Daffodil, get it checked out. If its all fine you will feel better just knowing that.

You are doing wonderfully with your pacing and you've added some big stuff to your routine. I found it helpful to see my psych while returning to work the second time. She was good at helping me recognize symptoms that were slowly coming on but I was ignoring them while taking on more at work. It's not that you are doing that same, but your thought of seeing your counsellor is a good idea as you've got so much more added on now.

Sandi K. Xoxox

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Hi Daff, we are all so proud of you here. I think we all ride those waves, the physical and the emotional ones.

I am starting to think more and more that our bodies and brains are like a car.

Once you get a car repaired you listen for every slight noise and feel for vibrations and hesitations. Often they were there all along but now that one thing is fixed they become more apparent.

There are many words of wisdom posted on the site. I often come here to prove that I am not alone, still sane and to see if others experience the same things I do.

Other than the sane part I am fitting in quite well :crazy:

You are doing amazing!

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Hi Daff,

I feel this way often. I know sometimes I get the cold feet and hands .It's just part of the roller coaster of recovery. Hopefully just a down turn of the coaster.

I have to say, it took me about 18 months to learn pacing. So you are way ahead of me. Sometimes the mind plays tricks on us. Even more so with a brain injury.

Hope you are feeling better today.

David

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Hiya Daff,

Not been on but been looking in, now listen to me my Shunt Pal xx

I have had the dizzy/giddy spells and decided to rest my brain (What brain Win ).

Instead I have been mean to Al and Sarah, started feeling sad for myself.

So I have decided to go to Wales with Al to see his pal, I am so scared but he has promised plenty of stops.

I told him that I don't want wheelchair but I need it.

Now Mrs get to Docs and tell them how you feel and put your mind at rest xx and rest as much as you can.

We cannot have the shunt club being down xx

Be Well Daff

Love to All

WinB143 xx xx

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Hi Daff,

You have done remarkably well so far, so well done! I have similar feelings of anxiety sometimes, you know, 'I know there's something wrong, is this the one that's gonna get me?' type feeling. Then you realise it's rubbish and you then feel daft for having been so worried! I have been overdoing it at work, and because of changes and unreasonable demands, I have now come under such pressure that it is affecting my health. I can't remember the last time I slept properly, I am nearly 58 and I have two years to go until I collect my occupational pension - I could take it early, but it would be reduced and that would last for life. So tomorrow, after 39.5 years, I am handing in my notice and I am going to live of my capital until I hit 60 in 2015. I want to see my grandchildren grow up and if I carry on as I am, I dread to think what would happen. So pace yourself, your health is more important than anything. I can't take the pressure or the mental anguish any more so I am going to relieve the pressure by getting out. Yes it will mean lifestyle changes for a while but I have to do what is right for me and my family.

Good luck Daff, you are doing just great.

Best wishes too to you David, Carl, Sandi and anyone I missed, I can't remember and I was only looking two minutes ago! I should've written everyone's name down!

Macca.

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Thanks everybody. Had another crummy night but not as bad as the previous and i have taken things down to my lowest gear today. Drunk lots more water too.

Your kind words really helped me. That you're proud of me means a lot. The fact I am able to do so well at this point is pure testament to this site and my putting into practice what you have all shared and taught me. And I should say I am very up and down mostly it's just this is a bigger dip than usual.

Macca, you summed it up so well, that, its that what if this is the time I should check it out feeling. I am notorious for ignoring things and hoping it'll get better. When I went back to hospital last July and got my shunt it was after ignoring symptoms for quite some time. Well i thought i was supposed to have a bad headache after SAH. And they were like ' don't worry it won't be hydrocephalus ' and then you should have seen their faces after they scanned me. Panic stations or what. Apparently I had left it so long there was no room around my brain at all. Yikes. So I have learnt that I shouldn't ignore everything but equally don't want to do the opposite and panic at everything.

So I will be seeing the GP tomorrow to discuss the tingling, the cold feet, stiff neck ,the anxiety. Thanks from bottom of my heart. And Win , enjoy Wales. It'll be awesome.

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Hi Daff,

I would always advise that you get yourself checked out, for peace of mind if nothing else and don't worry about feeling daft going to the Doc's or A & E with your worries.

I ended up in A & E about a year after the bleed - nothing was found, but I felt like something had kicked off again and felt like I was back to square one again, especially with the fatigue.

However, I've had many "blips" along the way since then and the anxiety returns big time....I personally think that the mental torment is worse than the physical side.

You need to ask yourself if you're doing too much?

I have a neck left on my coiled artery and am still being monitored for it. I also have an infundibulum (spelling) on the opposite artery. None of this stuff helps, when things kick off, but at nearly 8 years on, I'm still here, but still have the odd time when it kicks off.

Wishing you well Daff and hope that you're okay...xx

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Good luck Daff. I think it is so wise to get yourself checked out. Also you must realize you have jumped many hurdles recently and our bodies do not adjust as easily as they did before. Hoping it is just a dip for you. Good luck! Maryb

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The saying two steps forward, one step back applies here. It is so hard to see when you're in the middle of it as you can in no way be objective and only in hind sight can you reflect on it. But then you will reflect and then prepare yourself for the next back slide. I only hope this one is short for you. I've had them and I think it will only last a day, but then I find myself finally coming around on day three. Then I have a fantastic day 4.

The psychological worry is so hard to confront. I know you meditate so here's what I do... Medicate on the concept of self satisfaction. Acceptance of what is at the moment. Not what was yesterday or I wonder what will be or when will this be over, but I accept myself as I am. I am my own master of this acceptance. I am the master of my own contentment and I alone allow discontent within me. I no longer choose this way.

~Kris

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Kris, I laughed there. Did you mean to put medicate? I think both medicate and meditate could equally apply. But wise words again from you all, thanks.

So I went to my GP who is very amazing. He said we can't ignore any pain that wakes you up from sleeping so phoned my neuro team, who in turn arranged for me to get scanned at local hospital. They wanted to check that my shunt wasn't acting up. Anyway after a long day of scans, bloods and very high BP( no surprise there) I am home happy in the knowledge that all my unnormal head remand just as unnormal as last time.

The doc at the local hospital made me laugh though. He said " your scans seem normal, no I take that back, they are amazing and full of hardware but normal for you" . Nice guy.

So I chalk this up to another unexplained recovery moment and Kris I will be takin your advice. I think I've been using parts of my brain I haven't in a while and they complained in a misdirected way.

Typical though..it's half term here and kids to entertain.....:shock:

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Good news Daff, I am so happy for you. I do recall when I worked for peditriacn that any pain that wakes you up is more serious is their eyes.

Glad your news is good, onward and upwards...I confuse medicate and meditate and LOL at that too - sort of the same for me. :)

Maryb

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My little saga continued yesterday. Sitting quietly at home after my few hours working yesterday I received a phone call from my neuro team wanting to know how the scans the previous day had gone.

They then said, ' did you have an LP?' , ' no ' I replied. ' ah, well we want you to have one to be absolutely certain the other anneurism is intact'....so that was my fun day yesterday. I got to spend another day with the fine folks of the local NHS. Everyone was superb. LP was awful. I won't go not graphics but let's just say third times a charm.:shock:

Then after a time spent flat I finally got home near midnight last night and they will phone today with results.

The hard part folks was the anxiety that came with the procedure, with the thoughts that race around. It's been horrid to be honest and I am sat here , pretty achey, hoping that this is the end of this particular episode as I don't feel strong enough to face any more shocks right now.

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The hard part folks was the anxiety that came with the procedure, with the thoughts that race around. It's been horrid to be honest and I am sat here , pretty achey, hoping that this is the end of this particular episode as I don't feel strong enough to face any more shocks right now.

Hi Daff,

I know how you feel and it's absolutely horrible when all of those thoughts come rushing back to you.

After my first scare post SAH, I kind of felt as though I had gone back to square one again and when I was in hospital, I couldn't stop crying, felt so depressed. The good news was, that nothing was found ... but why had all of this stuff happened again? I didn't have an answer for it, but felt rough for quite a while afterwards and had to try to re-build some confidence again.

I think that I said on here, it was like trying to re-build a brick wall over the months, only to have it kicked back down again and having to start over. Horrible times!

Take care Daff and hope that you get your results soon. xxx

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Thinking of you today daffodil, Hope it all is ok and you are feeling better very soon. I know last December when the surgeon said he could take out my brain tumor I was so freaked that I would have to start all over and frankly with only you guys that understand what it takes I was mortified. Ihope you get great news today. maryb big hugs

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