Dam that was a big wall!!!

[Desy]

Well guys I've hit a wall and I mean solid concrete and no sledge hammer is breaking through.

Suppose it all started the day I left hospital after my SAH (for the first time lol) and thought to myself how good I felt, and I did, only physical problem was foot drop and mentally felt on top of the world, can't say I was surprised at how good I felt as I knew no differnt and was shocked to hear some of the stories on here at how difficult recovery has been for most of you.

I've had no headaches, fatigue, tiredness or mood swings every day was just full of smiles and songs and the immense feeling that I was alive so maybe just thought that while at the time it was really bad, maybe everyone recovers differently and I was one of the lucky ones as the only thing I was going through was lack of sleep while never feeling tired and a few memory blips, a wonky foot and lots of pins and needles.

It has been four months now and bar being admitted in again for three days for strange sensations in my head which they had no explanation for and I've since learned to put up with the feelings in my head.

This day last week I was fine and had a quiet day no work just brought the child to school and came home chilled out, made the dinner etc and went to bed and then the wall just lay down and with no warning what so ever started fitting and it scared the life out of me, got sent to hospital and was kept in for five days, had a few fits from that including the latest one yesterday they said they think its non epeliptic seizures and prescribed epilum chorno, form that I have went through hell and back umpteen times highs and extreme lows so low infact that death seems the only escape

My body is going through hell, my skin feels like its crawling and my face contorting, its just pins and needles, panic, hulicnations, sickness very random shooting pains and jerks, one jerk was so bad yesterday it felt like I dislocated my hip as my upper and lower body went different ways so quickly, I just feel so detached from this world and every thing in it, nothing seems real

I have this strang feeling of falling to my death and that after that it will all be over, I also get a strange feeling that I just want to lie down just like the night I collapsed and go asleep and never wake up, that feeling is not new to me as that is how I felt after my SAH that I just lay down and went asleep and someone woke me up when they shouldn't have, just felt so tired after it all.

The worst part was on Wednesday I sat in my car crying while thinking about what I would write on my suicide note for my daughter that was horrendous and the wake up call I needed, I spoke to my other half about it and while concerned I promised her I would not do anything stupid and I think she believes me and is being great about it and helping me but also keeping a slight distance as that is what I need right now, I really need to try and make sense of it and it gets confusing when other people tell me what they think as I'm spinning enough.

Today I was high as a kite while yesterday I was fitting and feeling like an alien with weird moving skin, like come on if this keeps up I'm going to end up in an asylum, my whole body is crawling, tingling and pins and needles, I'm scared, not sleeping and constantly feeling sick with anxiety.

The doctors I've seen cant help and if anything make it worse with there diagoness like non epeliptic seisures, either it is or isn't, so thye are referring me to a physcholigts.

Found this feeling very strange tonight as I was driving back form the pub after watching the footie (off the drink for now lol) was driving up the road and just felt so at peace with my self while one of my fav songs was on and kept thinking how good it was to be alive, the exact feelings I had four months ago when I got out of the hospital and just get the feeling the last four months have been wiped and I'm starting again, but think I need to reevaluate my recovery process.

Guys I know I can't say all this and expect people not to worry about me but the thought of people worrying about me makes me feel worse and please believe me I'm to arrogant, selfish and stubborn to give in, I will not do anything stupid my family need me and I need them, and the only reason I have said it in a public forum is that with all that has happened from my SAH you guys have been the most understanding.

This could also be a warning to others that no matter how good you feel after such a traumatic brain injury, your brain can just switch off or play up at any time and when I hit the wall it happened in the blink of an eye.

Sorry for the moan but you guys are my support.

Ps I said nowt will happen as no doubt you guys would seek out a physic, send her to hell just to give me a kick up the back side

[iola]

Hi Desy,

I am so sorry you are going through this. I'm a praying kinda girl and will pray for you. It is quite a roller coaster ride of emotions. You are a healthy person one day not thinking about sickness or death and the next this awful thing happens and thoughts of life and death can begin to consume you.

The first two months after mine I cried every day and begged God for my life. I went through so many emotions. Dispair and fear were on top of the list. I knew I was blessed to be alive but when you are not well, recovery seems so far away and not reachable. There may've been a time we may all have thought it would be great to go to sleep and wake up healthy.

I do hope and pray that even though you are gong through a very troubling time, believe this will pass and the light will shine on you again.

As quickly as disaster strikes so suddenly can salvation come to our rescue. I believe this with my all of my heart.

Hope you are feeling better.

Iola

[paul99]

hi desy

I am worried about what you seem to be experiencing - should be looked into by an neurologist who specialises in epilepsy at least for an eeg which will highlight the problem - please insist that you be referred to someone soon. or when god forbid when you are taken to a/e insist that you need to see someone - its ok for drs to come up with non epileptic fits they don't exist, ask to see and get an eeg it traces the electrical impulses of the brain and will highlight any crossed wires take care

[Winb143]

Desy,

You are sensible so I know you would never do anything daft.

They are not nice things to have to say the least, I do believe once you are on correct medication you will be

absolutely fine. I am saying this from experience and keep the faith !

Love to You and Family now relax and be well. (easily said ! )

WinB143 xx

Edited August 31, 2013 by Winb143

[julie.1]

Hi Desy,

I'm not surprised you feel scared and desperate with all that going on! It's quite early days for me and I really recognise the feelings of fear and confusion - luckily I am not having horrible seizures like you, but sometimes my legs go, or I feel really low or confused out of the blue. It's frightening when the Drs can't seem to give any advice or diagnose what is wrong isn't it?

I also recognise that feeling of just wanting to lie down and not move again. I had it really strongly when I had my SAH and now sometimes I feel it because I have a kind of sea sick feeling.

I think it is really good you are coming on here to express how you are feeling. I have found some amazing support and advice from other members and feel much less scared (BTG is my kind of security blanket for now). Saying you feel desperate does not mean you will necessarily act on those feelings, and having others who understand and can come alongside you can really help when you feel so low.

Wishing you well for now and hoping things feel better soon,

Julie x

[MaryB]

Desy, Did they not put you on a medication last weekend. I guess not, I cannot tell you how many Doctors I have to search out for the right medications etc. It has been a long 2 years - don't get me wrong but I am better for it. As well as a better person since my SAH etc.

Sometimes I wonder if the question you / we need to ask when they say they have no answer for our issue is WHAT AM I SUPPOSE TO NOW ? What would they do and who would they see? It is like they say something like "ok, mri is fine" and we jsut accept that we are not so we feel empty and don't know what to say.

I also had moments of just feeling like I could drive my car off the bridge - once at about 6 months I had a car in my lane passing 2 semi trucks speeding right at me and he was about one semi away, he had to drive across my side of the road into a field. I never blinked or had once bit of panic I was just driving wondering what was going to happen. Lucky it turned out that way.

I am sure you know you need more testing etc and someone needs to find a way for you to be more comfortable. Like I said I just have not given up on myself and finding a way to feel decent again. I know for me at 23 months I am much further along with healing and that first year is tough as I just think they need to see where things sort out. There is so much more they do not know than they do.

To give you hope I just had a seven day stretch of feeling really good. I have not had one of those since way before my SAH between Fibro and CFS I always felt cruddy. I feel cruddy today but well deserved I did more this week than the last 6 months I think.

Good luck Desy, I have those same feelings but would never act on them but couseling is a gift from God. Everyone needs some even "normals" not just us Abbie Normals

Maryb

[Daffodil]

Desy. That pesky wall. If its any consolation I too was feeling I was doing amazingly well at about 4 months in and then ended up back in hospital for another prolonged stay. I know , and many on here do ,just how it feels to take those hard and painful backwards steps if they come.

The thing I figure is that when we had our SAH it was all so unexpected and beyond our control that all we could do was submit to it and wish , pray hope we would make it through. Also if youre like me i dont much remember anything of early weeks at all anyway, my brain protects me from that.

So we survived what many don't. There's an exhilaration to be found in that so its a good feeling initially after we discharge and then our bodies start to recover physically , we reclain small mundane tasks and we kinda think maybe it's all gonna be ok. You've been dragged back to scarier times over the last weeks and that's very hard.

My experience of that came as a hard reminder that we can't heal like we do from a broken bone and it needs time and acceptance and i needed help with that, still do. Accepting the pain and discomfort that comes from living with a lasting legacy from the SAH that maybe was hidden initially is also hard to come to terms with but you will manage it.

I started writing a blog when I ended up in hospital again. I still write it now but less often but the first post was called one step backwards.. It was my way of telling people around me what I felt but couldn't say about living now with hydrocephalus, the fear of how everything had changed and also just getting some of the feeling out.

I guess do whatever you can to get thru this. Youre never alone in it .Find what works for you and keep talking.

[DawnS]

Hi Desy,

I am sorry to hear that you are feeling this way. I just wanted to mention that with the exception of the body jerks, I experienced the sensations you have mentioned above for many months. I had a very strange twisting sensation to the right side of my face just above my lips which lasted continuously for well over 8 months. As well as this, I had pins and needles in my arms and which didn't go away when I moved so it didn't seem to be related to circulation, crawling skin was regular and also from time to time I'd have the strangest feelings in my fingers as if they were not connected to me at all.

All of these strange sensations disappeared gradually. It's hard to say when they stopped exactly but in my case by the time I went back to work a year later, most of the weird sensations had disappeared. Are you able to book an appointment with your neurologist or perhaps a different GP? While perfectly nice, my own GP doesn't have a lot of understanding when it comes to the emotional side of recovery, but there is a lovely female doctor there who is very empathetic and so for emotional matters I tend to book appointments with her instead. Is there any option like that available at your surgery?

I hope you feel better soon, Dawn x

Edited September 2, 2013 by penny
Quote removed

[Desy]

Well now hello ladies

Sorry for the late reply, been on a few times but just couldn't muster the strength to gather a reply.

Been up and down from the last post but not rock bottom thankfully, only had one more fit from then although have been body popping big time lol

Ach boo still can't string any thoughts togather, will try again soon lol but I'm ok guys. Xd

And gentleman

[liz2]

Hi Everyone

I think I've come up against that wall as well, though not as bad as Desy, but it's very scary. I'd been doing really well (SAH in Jan. and shunt in Feb.) been away on holiday and back to work, doing a lot of walking and feeling great then Wham! since Sunday I've been really dizzy especially later in the day, doctor said blood pressure was OK but I'm going for a blood test tomorrow to see if I'm anaemic but from what I read on here it's more likely to be my brain telling me to take it easy. Work have been very good and said to go back to half days for now, but it's really knocked me back when everything was going so well.

Do we have to accept that this sort of thing's going to happen every so often?

Best wishes to all.

Liz

[kpaggett]

I'm recognizing the volatility in your words. I felt the same. When emotions are a part of your recovery, it adds an extra dimension that is rarely talked about. I like you feel so, so good most of the time. I'd go on to say, my mood is better post SAH even though my emotions deviate from the good mood on a roller coster ride. But once, the ride ends, I go back to feeling in a good mood like it never happened. I often used to have what I call 'existential crises' on a regular basis. These involved feeling desperate, hopeless, or wondering how I was going to continue on living like this. I can say, I only have this about once every couple of months now.

Early on, my husband started timing them and they tended to follow a similar pattern no matter what he said or did. It was all neurological. It is amazing how much of what I felt was just misfiring of my brain...trying to circumvent the damaged areas and making new emotional connections.

Once I realized this for myself, I began to be able to watch the emotional wave come and go...even the complicated emotional states like confusion, discontinuity with reason, or wallowing. It is easy to be happy. Anyway, now I know that it will pass in a few moments if I just go inward and concentrate on detaching from it. The emotion is not me.

I have no idea if any of this makes sense to anyone else, but it sure has helped me deal with both the simple and the complex emotions that don't match my overall mood at the time and realizing that the trigger is just that, a trigger and not what I am really emoting about. I am emoting about anything or nothing because my brain is trying to figure it all out.

~Kris

[Desy]

I'm back!!!

I think lol don't mean to sound rude but just can't be bothered trying to think these days, seems like hard work lol so just a quick response as its not nice to start a thread (chat) then just ditch it, espicaly one like mine.

Have not been to bad the last week if anything just really tired to the extent that I've been taking a nap during the day which is something I never do.

The epilum chrono tablets seem to be settling me down a bit and not just the fits also my moods, mind still get the feeling that I want to lie down and just never wake up again, not dieing just a long deep sleep, which is the exact way I felt about the night I collapsed with the SAH.

Always felt that the night it happened that's how I felt just to tired mentally and physically and that's how I feel now.

Have my six month scan on Monday so should have a bit of good news then, then I can start making plans for the future peteculary with work as I do not want to end up on benefits, enjoy working and learning and earning and well, spending lol.

I've applied for an appernticeship as a gas engineer last week but after spending the last two days painting our bedrooms my foot is really sore and swole now im good at ignoring pain butbthink a five day week on my feet with hard graft might be to much, so don't know how ill manage it, would hate to go through all the training only for my foot and leg to let me down, also have an appointment in the spasticity clinic for either dry needling or Botox injections for the foot/leg and don't know if it will help or keep me of my feet for a short time as I think the Botox can be painful after it and you have to rest.

All in all cant complain as I'm planning my future and not my demise so mentally in a better place and if work does not go the way I want it to go then I can say I've tried and its not my fault and I have a back up plan in place incase it doesn't.

Thanks for the thoughts and replys guys it really is appreciated.

Also thanks to my family and the way they have handled this news as when you feel like that its a fine line between letting there concern overpower me and make me withdraw more and giving me enough space to sort my head out while also making sure I'm ok.

[kempse]

Lovely to hear from you again Desy.

Well done for all your efforts, I hope things work out for you, but don't go overdoing anything and don't forget that brain needs a little tlc:-D

Despite all the problems you've encountered, you are an asset to the 'BTG team' especially with all those lol's - a sense of humour is always a bonus.

Best wishes,

Sarah

[iola]

Hi Desy,

Happy to hear you are doing better. Wonderful news. So glad you are planning for the future. You are an inspiration. Good luck with your foot and hope whatever they decide is best will help ease the pain.

iola

[Desy]

Now kempse shouldn't of said that, tis me after all and god knows what madness will follow...

Our old brains they broke down, they went pop, got messed up too.

Nick nack paddy whack and an lol too, will you laugh out loud with me too.

Our moods changed sometimes good sometimes bad and it was sad.

Nick nack paddy whack just laugh too, it will fix you really good.

Lol can help you through some dark days and scary ones too.

Nick nack paddy whack lol soon its never to late even a giggle will do.

Laughter heals laughter soothes takes away them pesky blues.

Nick nack paddy whack kempse laughs too soon the whole forums in stitches too.

I'm a geg preaching to you about all the good lol's do.

Nick nack paddy whack need my own medicine too Will lift me out of this dark mood.

Nick nack paddy whack stop laughing at me, as I'm just going stir crazy.

Right got to go, there coming for me, in a padded cell ill soon be.

Nick nack paddy whack to my last lol. Only joking they'll be more on there soon.

See see told you didn't I lol