Two steps backwards...

[Nat Baker]

Hi All

I hope you all had a nice Christmas and New Year.

I only recently joined this forum, just before Christmas and already it has been so helpful to read some of the discussions and realise I am not alone in my recovery

I was hoping to let others know what is happening for me at the moment, and find out if anyone else has had experience of this too.

I made a great recovery after my SAH in October 2014, and by Christmas time was feeling a lot better; my headaches had pretty much disappeared and I was feeling much more "with it", I was generally happy and was coping well with my fatigue. My memory was also starting to improve.

However, since last week I have had the same headache return and it has been constant now for over a week. I feel confused, disorientated and "fuzzy" a lot of the time, and like I can't get everything straight in my head. I can't remember what is happening on which days, and I feel very cut off from everyone. I find that I am having trouble sleeping again and also wake up in a bad mood. I also feel sick a lot of the time.

I am so confused and frustrated as I thought that I was getting so much better, and now it feels like I've taken two steps back again. I am concerned as I have read that sometimes people need more coils put in, and I am worried that my new headaches are a sign of this.

I am also worried that this is going to be the permanent state of things from now on, and I am always going to feel confused and like I can't get everything straight in my head.

Any advice that anyone has would be very much appreciated

Nat x

[Louise]

Hi Nat

 

If your at all worried seek advice from your GP honey.

 

Have you been overdoing it (with feeling a lot better & 'with it') can make you overdo things a tad.

 

Keeping your liquid intake up helps with the disorientated & fuzzy head.

 

But all in all it always seems to be so many steps forward and as many if not more back the way, but Oct is still early in your recovery...

 

rest and take it easy and keep hydrated...

 

take care

[marg1]

Hi, I had my SAH in June 2012 and like you got a little better and then started getting constant headaches ,bad tempered and depressed, my first yearly follow up scan showed all was well with the coils, I eventually after another year of constant headaches went to my GP who diagnosed depression and panic attacks ( normal for what I had been through) I had only been taking the tablets for 3weeks when my panic attacks and headaches disappeared , I began to feel more like 'me' again. I do still suffer from some headaches but not too many and have just had my 2yearly MRI scan . I am waiting for the results at the moment so will ley you know how I get on x Hope this helps, and please try not to worry x Good luck x

[Carolynusa]

Good morning Nat!  Sorry to hear you aren't feeling so great.  Really.  I just had my sah in June of 2014 so am pretty new to the healing process myself.  I have been on a "preventive regimen" of oxycodone since I left the hospital and I truly believe it has tamed my headache to a large extent.  I have cut my intake of oxy by half and still seem semi-okay with it.  However, I will be fine for a day and the next my head is driving me nuts!  I get edgy, depressed, disoriented, frightened all at the same time.  To tell you the truth regarding my short term memory problem I mostly feel like it is getting worse!  However - from talking to my neuro people I believe all of the above is part of the healing process that your brain must go through.  

 

I would suggest making an appointment with your physician as soon as possible to discuss how you are feeling - especially regarding your headache.  It's extremely important that you are your own advocate for your health and hound your doctors, if necessary, until you feel like you're on the right track.  

 

Just remember...It's your brain.  I just saw a picture of mine at a doctor's office.  On the right there were coils and clips and the color was slightly browner than left side.  This was bruising and healing, etc.  Takes a while.  

 

Do you live with somebody?  Keep somebody around you?  I hope so!  The people on this site are well-versed in symptoms and I'm sure many have experienced what you are now.  DON'T GIVE UP HOPE!  See your doctor!  Keep in touch here.  I know I won't be the only one answering your post.  Keep reading.  I feel for sure you will feel better than you are feeling right now.

 

Much love and best wishes - 

Carolynusa

[Macca]

Hi Nat,

 

This isn't that unusual!  As Carolyn says above - it's your brain - the engine of your being! Your body has its own way of letting you know you've gone too far, too fast -  and this is it.

 

However. if it is now persistent and/or it worries you, get back to the hospital that treated you - sometimes GP's don't know enough - the brain is a 'Specialism' not a 'General Practitionerism' - so see the people that know about it and they are at the hospital not the GP's.

 

Don't let your imagination run away with you - it will feel like one step forward and two back sometimes.  Yes sometimes people have had more coils put in but, although possible, that's relatively rare.  

 

Don't bottle it up though, share your problems with someone and go back to see about it if the problem is persisting - in the meantime, slow down a bit, rest properly and stay hydrated.  

 

Let us know what you decide and what happens - we're with you!

 

Macca

[Skippy]

Hi there and welcome

 

As everyone else has said, see your specialist.  Where do you live? I know that once I had a specialist assigned to me I didn't have to keep going though the GP (although he was very good and even rang an ambulance to come and get me three weeks after my SAH as I was so worried) I don't know) - if this would be the same where you live though.

 

What you are experiencing isn't uncommon at all - have you read "Letter from your Brain" on here?  Its very good and kind of explains what your brain is going through.

 

It can be a long road to that place called Recovery, but you're allowed to make as many pit stops as you like.

 

Also, like others have said, you must stay hydrated.  This helps the brain with function and repair.

 

Take care hun.

[Daffodil]

Hi Nat, sorry to hear it's all a bit cruddy right now with head pain and confusion and like the others say do go and get checked out, I guarantee a high majority of us get scanned/ checked in the first months after recovery when things just aren't right up top and can't be explained away. If you have noticed a deterioration in sensation then it's something to question and investigate but not necessarily anything to be concerned about but I would phone the neuro team or go to your gp and ask them to phone to discuss,

Don't under estimate the impact of the fear and worry which may only now be making itself known and which makes everything ten times worse , (I know I still haven't got that cracked ), any worry and stress really is hard for us as our brains just can't cope with that chemical reaction I don't think!

Three months in there is a massive amount of healing going on but think whether as you felt a bit better did you start to do more and has more sensory load ? It could be your brain is letting you know it's not ready to shift gears just yet whilst it uses masses of energy to heal so try dialing things down and resting and drinking fluid and regular meals and see how that feels.

Hope it passes and it's just a step back before going forward, often my dips have been followed by some strides in healing and I hope it's the same for you.

[Nat Baker]

Hi

 

Thank you so much to everyone for all your kind replies and good advice.

 

I think that maybe I have been "over-doing" it a bit; when I have been feeling well it is easy to forget that I am still in the early days of recovery, and carry on doing all the things that I might have done before. I suppose over the new year I was guilty of this, and so that might explain why I have had a bad week.

 

I am due back at the hospital at the end of the month for a follow up appointment with my consultant so I will be sure to speak to him about any concerns I've got then.

 

I probably don't drink as much water as I should, or rest as much as I should, so definitely some lessons to be learnt there, I think!

 

I'm feeling a lot better today, much clearer and no headache for a change! It is definitely reassuring to read that other people have felt similar, although I hope that today is a good day for everyone.

 

xxx

[kpaggett]

the setback or the back slide. We've all had them. We've all added to them. We've all seen in retrospect what not to do again and yet we find ourselves still doing that very same thing that brought on the last one we had. It all starts with listening...recognizing the signs. It takes a while to see them. Only with experience can you reduce the number of set backs you'll have. Until then...know that they will happen. Even now, I had one today. I took action only after a little bit, but now I feel fine because I did take the action finally. Yes I wish I had nipped it in the bud, but at least I got the message before I had spent the rest of the day weeping or hurting.

Get curious about the state of your brain. Find out its highs and lows. Find what helps and what hurts. Do the former as often as you can.

~Kris