2 years post NASAH and need help

[Megan Erickson]

Good day my fellow SAH survivors;

 

I am fast approaching my two year anniversary from suffering my NASAH.  I was 37 at the time of the event and was in very good health, overweight but nothing too serious.  Unfortunately work was my life at the time - as could be witnessed by being on my blackberry during the first few days of my hospital stay.  I was in hospital for 2 full weeks until the vasospasms subsided and was deemed safe to go home.  It took me another 3.5 months to return to work only to be let go upon my first day.  I have since found other employ and totally love my work.

 

I suffered short term memory loss at first, but that has since corrected itself.  I am now a sonic listener as I call it.  Very sensitive hearing but that is slowly getting better as well.  I get easily tired and moody - much to the annoyance of my family.  I find keeping hydrated and rested helps but I am very rarely able to sleep more than 3 hours at a time (habit formed by regular stat checks in hospital 2 years ago).  I find I'm afraid to fall asleep in case I don't wake up.

 

I suffer daily headaches.  I have tried various pain medications from my GP - gabapentin (allergic to it - I would swell up badly), trazadone (don't like the lingering feeling the next day), and now propranolol.  It seems to do the best but still have daily headaches and sometimes they are debilitating.  Each new day that I am suffering the throbbing pain I find that more of me disappears - being eroded away by the pain.  No one around me seems to understand what it is I am going through.

 

I feel trapped in this torture chamber of my life and I need to get out of it before it becomes the new me.  I have been afflicted with depression and anxiety since I was a teenager, but now it is getting worse.  I am currently dealing with a new found food allergy and the prednisone the doctor has me on not only makes the depression worse but makes the headaches almost as bad as the SAH pain - yes that bad!  Unfortunately it's the only choice I have for the rash so I'm hoping it heals soon so I can discontinue taking it as well.

 

I live in Alberta, Canada and I would very much like to get in touch with ANYONE that may have any suggestions on what I could try or who I could see in order to lessen the grip this daily pain has on me.

 

Any help or guidance would be greatly appreciated.

[Skippy]

Hi Megan

 

Welcome to the site and to the family.

 

Although we help with the experience that we have had, we are not able to offer medical advice on conditions or medications as none of us on here are qualified.

 

Maybe you should go back to your doctor and talk about the symptoms and reactions you are having to the meds that you are on and see if he recommend an alternative.

 

You are in the right place here to vent and know that you are not alone in your recovery.

[Winb143]

Hi Megan,

 

I found BTG via my daughter as it helped her understand what was wrong with me, She knew I had an SAH etc. but I was in cuckoo land until shunt was fitted.  Almost 6 years down the line I can honestly say my headaches have got better but as Sami has said always see Doc. Put your mind at ease.

 

When I came on here I was like so down and it was the end of me as I knew me.  But a few chats with people who know how we feel is a good thing.  

 

We are different and cannot take noise and sometimes our head feels all creepy and itchy and we get good days and bad days, but life gets better,  well okay I still shout at him indoors ha,   but he has been a real good hubby and my daughter also a great help.  xx

 

Get to Docs write down what you want to tell him/her and don't be fobbed off, my Surgeon said to me  "No Stress " so I am passing it on. 

 

Just sort yourself out with pills and headaches and anytime you feel down come on here.  I came on here and the amount of times  my Hubby looks at me as I am laughing  at posts and replies. 

 

Good Luck and relax and no Stress !!  hope you feel better soon. 

 

Be Well

 

Winb143  xx

[Daffodil]

Hey Megan. Welcome and I sympathise with your pain levels. Not good at all and so dehabilitating

My hospital had a pain team, seriously, and they always talked about getting in front of the pain, managing it so you can then see and understand the root cause. I had challenges after I had my shunt and we tried some really innovative things to break the pain cycle. Sounds to me like with everything else going on your doctors need to take stock and see what they can do to help you break the cycle if possible. Talk to them. Also have you tried regular breaks in your day when you just have silence? I meditate in tiny bursts and the peace really helps my brain cope I think.

Glad work is good but that effort will always leave you frazzled. I know how you feel with all this as I was 39 when I had my SAH. Busy working mum but now I can't do what I did, just can't, so my life is adjusted and I am happier if poorer for it.

Go back and talk to them. There will be a way through.

[Megan Erickson]

Good evening,

When I was asking for advice or suggestions I wasn't meaning medical - I was looking for alternative ideas - meditation, yoga, etc.

I am finding the silver lining is harder to locate these days. I have found comfort in a number of posts/topics here and appreciate the kind words in previous messages too. The talk of "new normal" makes me feel slightly resentful but I understand that I just have to let the past go and look forward instead of backwards. Not always easy.

Luckily I have gotten most of my memory issues sorted out. I had a photographic memory prior to SAH and just after I had no short term memory at all - I lost my cell phone a total of 75 times in one day it was so bad. It's not 100% back to the level it was but its very good - better than what most people have I believe so I have learned to cut myself some slack in that aspect.

I find the idea of meditation difficult - not sure I could actually manage to sit still long enough to do anything for 5 minutes never mind longer. However maybe that's a sign I should work on it? Anyone have any pointers on where to start with this?

I located a chronic pain clinic as well as Calgary Headache And Migraine Program (champ) so will discuss being referred by my doctor to this and see what they can do for me. The idea of having to rehash the entire history with someone new frustrates me but that is what I'm going to have to do in order to get the help I obviously need.

Thanks to all for just listening and understanding. It's nice to not have to validate my feelings because you understand.

[Daffodil]

Megan, not easy at all I i too resent the loss of memory. I have forgotten to do so many things and lost others but equally I now try to see that it's a little like Groundhog Day and give myself a break. It's not I don't remember it's just my ability to file the memory is broken.

I have learnt and use mindfulness, I had actually start prior to SAH and then made it part of my day as part of recovery. It's not for everyone but I would strongly recommend the practise of stillness and silence for a damaged brain. Whatever helps you right? Find sonething. Meditation, yoga, just walking and looking at the skies, just sitting outside and turning everything off, finding quiet and bring kind to yourself.. Whatever you call it I think our brains have more need for that time out so if you can try I really think it helps.

We all rush about, society celebrates the achievement of action, activity, busy busy but through my SAH and enforced slowness I realise we are more peaceful if we are able to live a pace more gentle. I just don't think brains can run without proper and frequent shut downs, and if they're bit damaged like ours it needs more frequent attention.

Here's my analogy for today. My daughter complained her iPod ( yes spoilt brat!) wasn't working, was frozen. I asked when had she last shut it down properly and cleared the cookies , turns out not for ages ,so it froze . Did that, left it off for 10 minutes . All fine. My point is you can't leave things running up top all the time without switching off completely, we aren't designed that way and our brains now emphasise that.

It takes effort to learn but then it becomes a habit but don't beat yourself up if you can't do it, so what if your brain wanders, it will, just bring attention back to just bring still. It takes time. I think it has really helped me and also when my pain notches up , as it is wont to do depending on weather etc the ability to take myself off, do some gentle breathing and relax rather than stiffen against the pain just helps me. To give you a view I now rarely take any pain relief so then when I do need to it works, but everyone is different.

The book if you are interested and I really recommend is "finding peace in a frantic world" by professor Williams. I met him through work prior to SAh and I love the scientific slant to it and credibility of the Oxford centre It also has a cd of meditations that guide you including a 3 minute one!!

[Winb143]

My memory was good before SAH also.

 

Names were my downfall this was me...I know these were my bridesmaids,  so they said "Hi Aunt Win what's my name?" ..they meant well but What on earth were they told about my illness.!!  arghhh  

 

I couldn't remember my nieces names , so I said "I know who you are" (thinking time) and they said who? I went Your my bridesmaids".

 

Gave me time to relax and remember their names..my memory is much better now days although I do repeat myself a lot.  ha xx

 

We will all get there eventually,  I read if you feel angry or stressed imagine you are exhaling red air and inhaling blue air calm and nice air.  I tried it for a while but I have a busy brain lol

 

I will be thinking of of one thing and my mind jumps to another thing.   xx

 

Win xxx  Passes Megan a smile as it is good to smile try it after you've read my daft post xx or you feel you need to smile xx

[kpaggett]

Embracing the new you is a process that is ever changing.  It gets still sometimes.  One week, I am totally focused on my left neck pain, and then it disappears, but then wham, I can't navigate with a set of printed directions.  It is all so variable.  I try and tell myself that whatever I am experiencing now is just a phase in my recovery...this puts it all into perspective.

It is hard to get out from where you are and just observe it as if it is happening to someone else, but it does make it easier.  Also, pretending a friend has the same complaints and what would you say to her?  Say that to yourself. Meditation.  It really helps.  I know that crazy ever chattering mind.  The ADD mind.

 

I started by just counting my breaths from 1 to 10.  If I got distracted, I started over again from 1 to 10.  After I could complete one round...I couldn't at first, I added 1 to 10 twice then three times.

I had to count both on the inhale (1) and exhale (1), inhale (2) and exhale (2), etc.  Now I can just breathe without any counts and my mind stays focused if that's the type of meditation I am doing that day.  There are many ways to sit quietly alone...these are all meditation and you're ALWAYS doing it right no matter what happens.  Unlike our daily judgmental ways of the rest of our lives.  Take a moment for yourself.  You'll be a better you for it.

 

Good luck,

~Kris

[Frank French]

Hello my fellow canuck!    A fellow Albertan here as well.

 

I sympathize with your frustration.   I suffered my SAH November 13th 2014.  And like you, I was always on the go.   Working 2 jobs  as well as having somewhat of an active life before my SAH and dropping down to being on disability for almost a year now.  (Thank god for good insurance.)

 

I pushed myself hard to get back to work and back to "Normal" afterwards.   And that in itself proved to be a bad idea.   This thing takes time to recover from.   As much as I hated hearing it myself I find myself offering you the same advice I had to eventually accept.   You may just need to slow down a bit.   Look into some sedatives to help you sleep.   I find that if I don't get enough sleep (And we're talking 9 - 11 hours here)  my headaches return with a vengeance.   I mean BRUTAL!  

 

I wasn't much of a fan of meditation either.   But there are other means of meditation.   Simply sitting on a river bank and watching the water flow by seemed to work a bit for me.  

 

Good luck on your recovery.   I hope this helps.

[iola]

Yep, I know this story well. I am two and a half years in and just get angry sometimes. It's not a why me thing it's a when is this gonna stop thing. I still get headaches and live on Tylenol. I've tried it all and what helps me is a simple massage. It really quiets my mind and relaxes me and helps my head feel better.

Lack of sleep is the worst and stress from work does not help. No, do not expect anyone to understand you. They cannot until they experience this. They see the same you. What you feel inside is not the same you. You but different. I was told I was much more introspective these days. True statement. We are what we have to work with.

[Macca]

Don't apologise for being you, even if you area bit different than before.

 

People have to accept you as you are now, not as you were.  Although they can't see the injury, your behaviours mark you out as not quite the same as you once were.

 

So explain it to them and keep on explaining so they don't forget and then let them get on with it.

 

It is then their problem.

 

You have enough to contend with, without them adding to your problems.

 

Keep chillin' by the river Frank!

 

Iola, nice to hear from you again - keep your chin up!

 

Macca

[Winb143]

I am sad that my back really aches and stops me walking very far.

 

I am Happy that I never died while having SAH/Ventriculitus and Sepsis while in hospital.

 

So apart from putting on weight and not walking very far.   I am so, so,  pleased that I was saved to just tell Hubby and Daughter how much I love them and then sing and get them at this stage "Alright Win you don't have to sing to me anymore"  ha ha

 

Poor things they are and all on BTG have had a dose of my songs but I cannot help it ..I feel like I have been so Lucky to still be alive.

 

So when down try and think about happy times, if possible.  I know there was a time I was down and BTG saved me honestly !!  Along with Hubby and Daughter of course xxxx

 

Good luck All 

Win xxxx xxxx 

[Chelle C]

Hi Megan,

 

I`m sorry you are having so many problems, headaches can be very debilitating

as I know from my own experience, they don't just affect your head but your whole

body,

 

My short term memory is very bad and I took the advice from Macca to write things down,

 

It can be very frustrating trying to come to terms with the new you, yes people look at you

and because they can`t see your brain injury they assume you are ok, they don't understand

what has happened to you, like Macca said explain it to them, then let it be their problem, 

 

I am 16 months into my recovery and I spent a lot of time saying sorry to people for not being

able to remember things, I don't have to say sorry for being the new me, I am just really coming

to terms with this new person, I did like the person I was before SAH, I am now beginning to accept

and like the new me.

 

Quiet time to yourself is very therapeutic, I like nothing more than sitting alone in a quiet place, 

it`s amazing how the brain responds to that, I also drink a huge amount of water which I also find

helps with the headaches, don't be so hard on yourself it takes time to recover from this trauma,

give yourself that time, you deserve it and so does your injured brain.

 

I do hope things start to improve for you very soon,

Love

Michelle x

[Susan McGoldrick-Meerdink]

Hi! I am like you too! Daily headaches. I expected them however. The doctors told my husband while i was still in ICU that was expected for the rest of my life. Mostly now, at almost 3 years post SAH, I don't notice them as much. But it is draining. I was a type A person and am now finding I am the person who needs the most help. The fatigue is just part of having a TBI. I am extremely fatigued. But again, you have to find ways to manage it. 

 

I can say now I take very little medications for the headaches and for the lack of sleep. 

 

During the first year, I was on a TON of pills. Migraine meds, pain meds, sleeping meds, nerve pain meds....  I felt the result was I became a zombie. On TOP of the brain fog already there from the brain injury. I stopped them all. My doctors were not happy as I didn't do the right way with their monitoring but I found after a detox period.... I wasn't as foggy and could get more accomplished. I also began sleeping better and letting go of the "sick" me.

 

The fear of it happening again.  My husband and I went through a script when I would feel that way. I would tell him my head hurt and I was scared. He would talk me through the night of the emergency room and what followed that I wasn't awake for. He reminded me that if I was having this conversation and thinking about it, then it wasn't happening again.  This is similar to Cognitive Behavioral Therapy. It worked to alleviate the constant fear in the back of my mind that death was still coming for me. It took a while but I think it was the 2 year mark where I started not thinking about it all the time. 

 

For sleeping, I have found I can't sleep flat with my head down on one pillow. I MUST have my head propped up on an incline. If I am flat on the bed, I still get a massive headache. Try sleeping up on an incline. IF the pressure/pain in your head is lessened, you might get sleep without fear and then eventually without drugs.