Am I not that bad?

[Gaynor1071]

Hello everyone,

Firstly, thank goodness that I found this site. I had a non-anni SAH on 10th July, which wasn't diagnosed on my first hospital admission but was eventually diagnosed on 16th July. I stayed in hospital until 25th July and have nothing but praise for the doctors and nurses who helped me during my second admission.

My neurologist doesn't want to see me until February 2013 - I know that I should see this as a positive but does this mean that I'm not that bad/ill? I worry that I shouldn't feel as bad as I do given that mine was not the most severe episode that I could have had. :confused:

The thought of going back to work anytime soon seems impossible as I have no energy or attention span at present. My GP is being very supportive and has signed me off until 6th September "as a starter". I plan to take the advice on these pages and take as long as possible - I'm lucky that my wages are not yet affected by my sickness absence.

Gaynor

[Louise]

Hi Gaynor

Warm welcome to the site glad you found us..

First of all your are in no way alone in being tired, with no attention span, I think they leave your first visit for 7/9 months in order for things to settle down..

Dont attempt going back to work untill you feel your ready obviously at the moment your not ready.

All I can add is rest, drink plenty of fluids, & listen to your body if your doing too much 'stop' when you feel your tired....

again welcome...

[Sandi K]

Hi Gaynor, welcome to BTG!

I had a non-anny too, almost 2 years ago. Recovery is different for everyone but it doesn't seem to matter if you have a bleed from an aneurysm or no known cause, a bleed is a bleed and recovery can take awhile. The positive thing about NASAH is that statistically its not likely to happen again. I've always struggled with that concept, wondering how can they be so sure when they don't know what caused it? But all studies show that to be the case.

It must have been awful between the time you had your hemorrhage and when it was actually diagnosed.

I returned to work too early twice and am now off giving my brain the time it needs to recover. I think I prolonged my recovery by pushing myself too hard too soon. Healing the brain is a very slow process. Drink lots of water and allow yourself to rest.

Sandi K.

[MaryB]

Welcome Gaynor,

I am coming up on 1 year next month. Great advice here. I want to add drink water, rest, eat healthy. I am/ was just reading a book - something like 495 tips for Brain Injury Recovery....and one of the things I wished I started sooner was my routine I have always had a rountine and know I am just starting to find it again. Start small but some kind of rountine even if it is for getting up in the morning. I use to spend 15 minutes looking at 25 pair of white gym socks. I had to tell myself "Just socks mary GRAB a pair". Also note sand post it notes are/ were my friend. This may be more for the up coming time depending where you find yourself in recovery.

Good luck, mary

[Janet]

Hi Gaynor and welcome you are still really early on in your recovery and we all heal at different rates only you will know when you feel ready to return to work. The important thing for you at the moment is to get plenty of rest and drink plenty of fluids. The fact that you didn't need coiling or an operation does not mean that the after effects and symptoms from the bleed are any less because of that.

Wishing you well with your recovery and look forward to hearing more from you.

[kpaggett]

Welcome Gaynor!

Me too with NASAH and you are experiencing normal sensations at this time. Sleep was what I needed right at first. Two naps/day. Then just rest periods, but in no way ready to get back to the rat races. Actually, I haven't attempted all that I used to do before my SAH yet. It's still a work in progress, but there is still progress even now. I hope you find your individual way and enjoy this site as I have.

~Kris

[Teechur]

Totally normal. The frustrating thing is, the doctors make it sound like you're "fine" and can just pick up life where you left off. I will be perfectly honest. I thought that is exactly what would happen. Like maybe I'd have to take it easy for another week or two until the medications I was loaded with in the hospital were out of my system. All of the feelings I had in the hospital, I thought, were from the meds.

I have a very very active life; runner, teacher, personal trainer. I tried to go back because the doctor said I was fine, that my headaches would go away within 6 weeks.

I went back to teaching after 4 weeks (3 in hospital). I went back to training too soon and had a MAJOR setback. I then saw another neurologist because my head was not getting any better, I was stumbling, had to walk with a walker or cane. He said "What don't you get that your BRAIN BLED?!" He made me take two weeks off then go back half time. Even that was too much. I managed to make it through the rest of the school year, but didn't work an entire full week. I took summer completely off, sending my poor business into the toilet. But, I built it before I can build it again and fortunately I do not have a payroll, loans, or a location to pay for. I work out of my home and coach running classes, teach bootcamp in the park.

I'm back at work now after a lot of fits and starts. I'm rebuilding my business. I still get nasty headaches, but not every day. I am running, although I ran a marathon today and had to "call it" at a half marathon.

In other words, it will take awhile for your life to get completely back to normal, but it will most likely. You may have some lingering stuff for awhile, but you'll be mostly normal most likely within a year. I'm 9 months out. I have no more neurological symptoms. I do get bad headaches and have tinnitis that gets worse when my headaches are worse. Concentration, problem solving, and even math are all back except when my head is really bad.

I'm on 75 mg Amitryptiline nightly and it seems to have lost its effectiveness. I'll see my doctor this week. Do NOT be afraid to call and ask for an earlier appointment if you want one! I wasn't supposed to see him until next month, but in the last two weeks my headaches have ramped up and I think my meds aren't working as well any more.

I won't lie. This has been one of the most frustrating experiences of my life, but surrounding me with positive people, asking for help when I needed it, and learning to take things a little slower has definitely helped.

Edited October 15, 2012 by Teechur

[kpaggett]

Just to warn you. You may be perfectly normal, but you may not ever again. Acceptance along the way is hard as it is day by day. I was told by different people how long it would take, and it is VERY individual as you will hear on this site. I am over 1 year and still have issues, but they are gradually getting better and better. I hope your recovery goes well and you begin to enjoy life no matter if it is the same as it was before SAH or somewhat different.

~Kris

[MaryB]

I think it takes about a year for them to know/ see how you have "sorted" out from the SAH. This is me talking about what I have read and observed. I am still baffled by the lack of interest on their part. I would think a blood pressure reading once a month would be acceptable at the very least!

I had seen my surgeon 3 months in a row but I had a dissection AND they had not told me about the brain tumor they saw until that 3 month appt. on a follow up MRI with and without contrast. The dissection is neara the tumor near my brain stem.

I believe I CHOOSE to see a neurologist as he visited me in the hospital and said I should follow up with him. That was weird as I do not know what that was about and felt almost sneaky. My surgeon over rode his prescriptions and was really angry with him. I ended up switching to new neurologist, I am seeing him montly now. Still no one ever offers any advice or information. I have an appointment tomorrow and hope I get the time to ask some questions like "so do you guys just wait to see how we sort out about 12- 18 months after this to see how much damaged is permanant?"

[cworden0124]

Just want to say...I feel like I am in the same position. I went back to work this week and my management has NO CLUE what I am dealing with. They seem to think I can just jump back in. And with the reason for my SAH being unknown...I am constantly parinoid about any ache, pain or weird feeling in my head I get. I think we all recover at different rates...but I am working with some great neurologists and they seem to have my best interest at heart.

[AnnieT]

Hi Gaynor

I get your worries about going back to work. I had a NASAH in January this year, had 8 days in hospital and a month off work then back to work gradually over 10 weeks or so. Like you I did not need to worry about pay stopping after a few weeks (I know I was fortunate as lots of people don't have this). For me, it was important to get back to work as I wanted to feel normal... BUT I would caveat that by saying I was lucky as I was able to take as long as I wanted to go back to work and do a really slow phased return. Plus it helps that I'm senior management so they let me dictate what I wanted to do. Despite that, my experience of other people and work, including my managers, was pretty positive. I think as soon as you mention the words brain haemorrhage people suddenly realise how serious it was and how it could have been so much worse for you.

So the only piece of advice I would give is that if you want to go back to work - that's part of your recovery and getting back to normal, but take it slowly and don't expect to be full time again straight away. Better to go back slowly and get it right first time than go back full steam ahead and have to go off sick again.

Hope this helps - don't worry you will know when its time to go back - when day time TV suddenly seems more awful than usual!

Annie

[Gaynor1071]

Thanks everyone for your words of wisdom and support.

I've recently seen the Occ Health doctor who is recommending that my phased return take place over 8 weeks, rather than the 4 weeks allowed under the sickness policy. Fingers crossed that happens.

I honestly now feel ready to go back to work but realise that I will be absolutely shattered for the first few weeks. Fingers crossed if all goes well I should start my phased return by the end of the month.

[Gaynor1071]

Hi everyone

Can't believe what's happened this week. I had a long standing appointment to see my consultant on 26th March 2013, which would be the first time I've seen or spoken to anyone from the hospital since my discharge last July. Have just had a letter to say that my appointment has been cancelled and re-scheduled for 13th AUGUST. It will be one year, one month and 3 days since my SAH by that point. I could cry, not because I feel unwell but I have a lot of questions that I would like to discuss with my consultant.

This thread started by me asking 'am I not that bad?'. I feel that the answer from the hospital is no and that I am being sidelined. I'm not saying that there aren't people who need to see him more urgently than me but surely waiting over a year is just a joke?

I shall try the appointment hotline tomorrow to see if anyone has cancelled. Keeping everything crossed.

[kpaggett]

I can certainly see why you feel disappointed! I thought I'd get answers to questions by seeing my doctor, but instead I was a 'cool case' so she did most of the asking instead of answering. The next time I saw her, I could tell she had read up on it though...not quite as much as I had. I really didn't like the feeling of being in the fish bowl so I'm leery of discussing it with anyone except a neurologist or the like. At this point, no one can answer the questions that plague me. I find meditation lets me ask and be OK with the perpetual questions that seem to have no answer.

Good luck at getting a quicker appointment, if that's what will give you peace.

~Kris

[MaryB]

That certainly is just plain wrong. Can you call and explain your situation? Of go somewhere else?

I would be just dumb founded but sometimes things end up working out for the best. I just do not know what to say. I think things happen for a reason for the most part but jeezzzz. I have been back to work and I just started Therapy! So what can I really say? I cannot cope well after my phase back in and I needed to step back and have someone guide me. Not working is not an option here as I carry the health insurance & I have to work like 33 -35 hours a week. I was doing fine. But I think the better we get or along the road in our recovery we do not realize how much we use our brains & wind up overloaded. SO maybe the cup is 1/2 full and you do not realize it yet??

Sorry your appointment was cancelled. I know how important those appointments are for us to get some answers. good lUCk mary

[kpaggett]

MaryB

I'm so glad you finally started therapy! I think you'll find that this was a good and powerful step. I know it really helped me and I only wish that I had started it sooner. My PTSD is way better for it. I no longer go at this point as I only required a short stint. I went weekly for about 2months, then skipped a week, went back to every week, tried every two again and it was OK, then once a month for 2 months and then done. I hope it helps you as much as it did me.

~Kris