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Looking for advice...reassurance?


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I'm not sure how to ask this because I feel crazy even trying to describe it. I am 42yo male and now just over 2 months from PMSAH. Although I have been back to work, I still have yet to feel even close to recovered. I have to stay seated and can't move around for very long or my symptoms dramatically increase. My headaches are better, but I have a constant 'pressure/swimmy/dizzy' feeling....not exactly dizzy as if I want to fall down, but very uncomfortable....like the worst hangover-type of feeling. I also go through episodes where it feels like someone is pouring hot water inside my skull, especially around my ears. Sometimes I am a little nauseated but more often just uneasy. In addition, I have constant ringing in one ear.

I am hoping someone can chime in as to their experiences and let me know how they have recovered and how long it took. I have been trying to keep my mind distracted so that I don't focus on my discomfort....but I had another setback this weekend....and finally started crying in front of my wife. She has been through so much with this and I really don't want to add to her pressure. I know she is sad because she cannot relieve my misery. I know that I have to deal with it. I am generally a very positive guy and always thought that I could endure a lot but I am very discouraged this weekend and have no one to talk to that can relate to my symptoms, and I don't want to sound like I am just complaining....but I go through episodes where I am just miserable.

Wade

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HI Wade welcome to our forum there are alot of warm great people hear who have lots to share.First let me say hang in there i realy think if you can find a way to stay home for a few more months that would help a great deal since the more you rest yourself the better your gonna feel.I just want to share with you that my first 6 months where mandatory house rest and believe me every month i would feel a little better a little more stronger and have a little bit more stamina.i takes time so hang in there.Relax your mind as much as possible having to work is stressfull try not to let it be stressfull.relax your mind.hope this helps my fellow survivor.Take care go slow.Danny.

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Hi Wade

I could have written the same story about myself. I tried to go back to full time work a few weeks after my bleed which was way too soon. I was unable to do a full day without falling asleep and my head pain escalating significantly so I took the doctor's advice and stopped work for a few months. The pressure, fuzziness, hangover feeling is exactly how I try to describe what is happening, and the constant ringing in one ear is also the same for me. I have tried to get back into my fitness training but it is a slow road. I managed 4 days in a row a few weeks back but crashed and had to take 3 days off. The message for me has been listen to my body and don't push too hard because it does not work, i always end up paying. My advice is be kind to yourself and be patient, and try to enjoy the good things that come from your current circumstance.

Best wishes

Tony

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hi wade

welcome to the site you have all the symptoms of going back to work to early and you are over doing things your brain has gone through the mill big time and its going to take some time to recover

the brain takes its own time in recovery as there is such a lot to repair as such recovery can take up to three months before you see the light at end of the tunnel so back off take some time off work please recovery is a partnership with the missus let her come on as well and we will help you together though this hard time keep up the fluids as the brain needs more fluids to flush the blood from the brain it takes three months to dissipate and the body to reabsorb it back into the body take one day at a time because there wil be days to you need to take a step back sleep when you feel tired listen to your body there is a letter to your brain in the inspration page read and digest take one day at a time please regards to you both

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Hi Wade,

It's okay to cry, we all do it, especially me the biggest howler on line.

You are here and that's the first step over with, now step 2 then 3 and 4 and so on.

Look back over the next month and see if you have got better be it small steps.

Bet the answer is "Yes I Have", it is a long haul but we can do it now cheer up, passes Wade a tissue Blow !!

I put my hubby and daughter through hell when out of it. Still do as walking is difficult for me.

So give Wifey a hug and cheer up if poss. Welcome to BTG

Good luck Wade and Wife

WinB143 xx

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Hi Wade, welcome to the site, glad you found us.

2 months is very early in the recover & to be back to work too hope its on phased return if not its way to quick obviously.

Knowing that your not alone we've all gone through this helped me hope it helps you a bit.

take care

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Hiya Wade. Glad youre doing ok and that youve found us. Im a firm believer in the power of tears, like Win, so let those emotions out youll feel better for it. Your wife will be pleased you're not bottling it up.:-D

Wow , you're doing well to be back at work but but i think your brain is sending you all your horrible symptoms and saying "let me rest a little longer".

It's really hard adjusting to the fact that you can't do things the ways you used to do them. We all have this in common to varying scales. So I'm not saying you shouldn't be at work , only you can judge that, but I think you need to adjust how you are doing it, maybe take more breaks and make note of what makes your symptoms worse and don't expect to do things the same and as quickly as you used to. Not yet anyway.

Accepting and adjusting is important. Your brain has been through a massive shock and it's trying to run all your everyday actions and heal. That's a lot of work it's doing. Think of how long a footballer rests his metatarsal before he plays a full match again...:lol:

Anyhow What I have learnt in this first year post my SAH is I have a lower speed that I need to sit at most of the time. That way i can still do most things, (not all) but slower. If I get it wrong and head out in my top gear then I quickly hit the wall. I did that last week:roll:

Take care. Come and ask anything, someone will help. You can see there are lots of newer members who are experiencing what you feel. You're not alone.

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Hi Wade,

Welcome,

Have you told your Dr. about this? I did not return to work for 5-6 months phase back after my NASAH. I can imagine how you must be feeling! Poor thing. I am glad you found this place as it is the only place that made it ok for me to recover. There is so much they do not tell you and so much you don't understand. The fatigue and headache early on are horrible and you must rest and drink pleanty of water.

We all have different areas of injury etc and recover differently as well. No one could ever imagine how much effort it took to think! I was amazed!

Good luck - stay in touch. maryb

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Wade,

I'm over a year and I don't feel 'Back to normal' yet. That's what the doc's told me I'd be. Rest works for me if I get a increase in symptoms. Not sleep mind you...just rest. I too was very heavy with that dizzy feeling of vertigo and still get it if I have an allergy or exercise too much. It is the worst feeling to have, I think. I cry so much. I figured out early on that my crying centers were damaged...like when a baby cries, not because of emotion, but because of the stress of waking or being hungry or whatever...that's me. I also cry about normal things on occasion too and if I'm in one of those release times, anything can make me cry. Literally, anything. Living with that is way harder than any physical symptom for me, but I'm not sure if this even applies to you, so...

Great to have you posting. Let us know if you need anything more. We're all here.

~Kris

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Wade,

Hope today is a better day for you. I know it must be hard on your wife as well and you feel that burden. We did not ask for this to happen, it is not our fault and we cannot hurry up a brain injury. It is not like a broken arm. I am over a year now - although working with barking animals just about kills me......at home I do what I can. I simplified my life a great deal. My real problems areas are reading, words, fatigue and memory loss, headaches are not nearly as bad anymore. But I have learned to listen to my body and do not push it too far.

As hard as I try to explain my symptoms to friends and family most just cannot understand it. And you know unless you have been there/here we would not either. I am well supported but much of my true lifeline is this site and these people that make it ok to need time to heal. I just thought I could hurry it up on my own.

If you asked most people here if they like their new self most would say yes, even the ones with some major handicaps. I would not change a thing as I am more enlighten, and feel more grateful as each day passes. I struggle but I am proud to look at obstacles as challenges. I see this as our cross to bear but also we are not like the only people out there struggling so I remind myself of that when I get feeling a bit cheated! I have to say it gets much better and it will take some time, no one knows how much time but it does get better.

Hope you had a good day.

maryb

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Hi Wade,

welcome to BTG! I'm glad you have found us, most of the things I now know about SAH have come from this site and having people here who understand how strange this can all feel at times is invaluable. I'm not sure how well I'd have coped without it. For example, you have discribed thet weird 'hot water' feeling in your head, it was such a relief to me to read that it was a normal sensation and it was also a relief when it stopped happening.

It might be worth it to record some of how you are feeling. That way, as the months pass you will have your own record to look back on. I wish I had done that myself, but to begin with I had difficulty in writing and even now, 19 months on my handwriting is completely unrecognisable and it takes much more effort than it used to to write.

I had 54 weeks off work and started back on a very gradual phased return, beginning on 8 hours per week. I was lucky enough to have accumulated so much holiday (if 'lucky' is the right word!) that a long phased return could be planned. I started full-time hours at the beginning of December last year and had to change roles in order to do that as my original job involved far too much multi-tasking - an ability that is very challenging after a bleed. If I am over-doing things, my brain soon lets me know. I get a high pitched whine in my head and if I keep going, a metallic taste in my mouth and I've learned at that point to STOP. Try to view your week as one single unit of time, don't arrange lots of things on consecutive days if you can help it. Space things out and give your brain time to recover in between events.

I wish you all the best,

Dawn x

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Hi Wade,

I am not able to offer you advice since I am at an early stage like you, but I can share some thoughts, based on what I have read and what I have found myself.

It seems to me that you have gone back to work much too soon, now I don't know what pressure you are under to do this, but if you can I think you would benefit from longer off.

I had my SAH three months ago, and haven't had any headaches for about 6 weeks now, so I feel I am making excellent progress. However I have had a lot of "tiredness", although that is an inadequate word! I have started to learn what brings this on and what doesn't. Initially any activity had this effect, but after a little while I found I could cope better with physical exercise than mental. I therefore focused on building this up to start with, just by walking to start with. Initially with someone else, then on my own with the dog, and gradually building up the distance, speed, and frequency. I have only started cycling in the last week (before the snow came!). I limited the mental stuff to very simple tasks, and kept them as short as possible. I certainly wouldn't have been writing this much in an email, a month ago, or if I did I would write a few sentences at a time over a few days.

I found by staying away from overdoing it as much as I could enabled me to avoid those exhausted, wiped out days, I had at the start. Now I feel I am ready to start very gently at work and build it up.

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I want to agree with Dawn that keeping a diary of how you feel is a great idea. I wish I had done one. You can just do one in words and add to it everyday. ALSO foudn some interesting reading on recovery that would help.

Develop a routine and stick to it.

Advance planning can help reduce the risk of forgetting.

Create a place for everything and store everything in its place.

Get Organized

Utilize a Tote Bag or back pack. Plan ahead place things in the

tote bag of Back pack that you will need for the day's activities.

Use a to do list.

Use a Journal to keep track of important plans, impressions,

ideas, appointments.

Use a planing calendar

Use a system of reminders.

Use cross references.

Use highlighters, margin notes and tabs.

Use repetition.

Make notes and use tabs.

Focus on one thing at a time.

Understand that your sense of knowing might have become

impaired by your head injury -- Learn to trust your instincts

Live in the moment

A few months after my SAH I had goen to get hair down and carried my calender and a pile of papers with me, next it was a yellow legal pad, than it was 50 post it notes ( most say the same thing!LOL) than a few post it's on my iphone as I could not recall how to use the phone calendar finally I got to the point I could just be given a card with my next appointment on it. My hairdresser pointed this out to me last month and it was nice to hear how far I had come.

mb

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Hi wade

I haven't been on here a while but u will find lots and lots of people with exactly same as u!

It's totally normal- if u look at my posts in the months after bleed I was freaking out about the titinus swimmers in eyes n swim my head - I still get it all a year out- yes made it- but it does lighten a bit! I think in the few months after anziety can also make its 100 times worse. You may want to try cbt therapy to help.

They finally found a cause for my bleed-an avm - and I have a meeting soon to discuss further management- and when I was told why the bleed had happened I found it a bit easier to handle- I was never happy been told it just happens it drove me mad.

Keep on at the consultants to get an answer I say and if they offer you another angiogram take it because like me your cause could've found and dealt with.

I wish you well for the future and give yourself time - you have been through a tough time but I promise it does get better.

Bev

X

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Thank you all so much for responding. It is helpful to hear from people who understand. It is just difficult to explain to anyone what this is like and very hard for me to accept that you can't just push through it. I had to take off work this week and it has been a tough setback. I went back into the ER and they did an MRI which was normal. Its so amazing how fragile the brain is. Anyone else get the shakes or chills? I have these episodes that start with a warm liquid feeling inside my head, especially around the ears, then my whole body gets hot and I start shaking profusely and I sweat all over. I had this in the hospital right after the heme but none since until this week and have had 3 days in a row. It flattens me and I can't function and is quite miserable. I've checked my blood pressure and pulse and temperature as all this is happening and it is totally normal! I just try to relax and breathe my way through it. Anyone else?

Wade

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I cannot remember much about early days but a memory I have is of going to my hubby and telling him I can feel

water running inside my head, down by cheek/ear.

He said well tell surgeon this (This is all a false memory I had as I was out of it).

I then got Hydrocephelus and had shunt fitted, no more false memories ~ I hope. lol

Good luck

WinB143

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