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Margaret

3.5 years out and still have questions

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I have been following this site on and off since the injury. Posted just once, I believe. I had my event in November 2014 and I feel like my symptoms have changed over time. My life is busy with a beautiful child and husband. I have an intense career- which I love but feel I can't do FT due to my health symptoms. These are my complaints: fatigue, headache, new food sensitivities, irritability, anxiety and an inability to exercise hard. My question is really in regards to the last problem. I can't exert in exercise. When I do I am feel very sick and dizzy.

 

Does anyone else have this problem after being out so long? I also just really never feel well over all. I sound like a downer but honestly, I am not. I have learned so much from this incident and I am grateful for that life education. Still, I'd like to simply feel ok once in a while. At any rate, any help would be appreciated. Thank you

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Hello and thanks for sharing your concerns about your progress post NASAH.

 

Can I just reassure you that you are certainly not a `downer`. Confronting life post SAH is a major challenge for most. You have survived a life threatening bleed.

 

I am sure members will share their experiences with you.

 

From following the site for some time, you will no doubt be aware that each recovery experience is different depending on the severity of the bleed, and the age and personal circumstances of those involved.

 

You say that you are unable to return to full time work.  How many hours are you working, and how soon did you return to work? Did your employer help with a phased return?

 

Trying to return to `normal` is a great challenge to everyone, and many of those who have been on the recovery journey for several years would stress that patience is so important. Your body and brain will react against any desire to push too hard to reach that `normal`  Many of the complaints you mention are exacerbated by too much exertion.

 

You mention your lovely family, and they will have been with you throughout your journey willing you to make progress while also affected by the difficulties you have been facing.

 

Advice offered often on this site is to set yourself realistic goals and always be prepared to re-evaluate as your brain and body react to what you are doing.

 

You will also find members who are involved in exercise to various degrees. Definitely not for everyone.

 

I do hope you continue your positive attitude despite these set-backs.

 

 

Subs

 

I meant to ask.... is it almost 3 years since your NASAH?  You mention 3 1/2 years in your `Header`

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Thanks for your response. My injury was 3.5 years ago. My work has been quite understanding even though the focus is on cardiac surgical patients. I went back very slowly over a year and made it to part time but never felt well. Over time, I have decreased to per diem and work once or twice per week. I do get discouraged because I love my career. honestly though, I just don't feel well. I worry there's something more wrong with me than the event. I have made incredible advances and I acknowledge that work. I am in my early forties and realize I have a lot of work ahead of me. I know these struggles are what it's all about. 

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It has been said before time and time again that it is easy to blame ensuing health problems on the SAH and in some cases that is not the case. I would suggest that you get medical advice and a thorough health check.

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Hi Margaret, I'm further on than you but I have not been able to regain doing any high impact exercise. Now I do have a shunt as well so I know I am prone to dizziness and don't have the balance I did but I struggle with anything that really raises my blood pressure too much it seems so I have adjusted how I exercise and now do lots of walking instead.

 

I agree a health check  is important, if symptoms are new or changing then don't ignore them. I have been feeling more fatigued recently and it would have been easy to put it down to the brain injury but in fact I am low in vitamins and iron even despite eating healthily , that said my GP thinks my ability to absorb them may have been disrupted by the effects of the SAH and my hydrocephalus so I need to take supplements.

 

The facts and stats tell us that half of people who have an SAH do not survive and of those that do over half will be left with lasting effects and 1:4 with disability. I think we talk all a lot on BTG about recovery which is brilliant but the bleed in the instant it happened does result in an injury across the surface of the brain "This is due to the damage caused to the brain by the initial bleeding and by the shortage of oxygen to the brain which follows it." Any surgery also cause an  injury and effects. 

 

The effects you describe I think are very usual with brain injury but sometimes are masked at first by all the more physical recovery and healing that is going on. If you like once the big regains that are there to made have been acheived the effects of the injury that remain reveal themselves. 

 

Im not sure the grade of your bleed but the bigger the bleed the more significant some of these can be. Have you ever been referred to a neuro psychologist? I found that very helpful to understand my more lasting effects and how to adapt. 

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Thank you both for your responses. I'm very grateful. I had a small undetectable bleed. I have gotten checked out by my pcp. I have been ruled out for a lot of things. I am going to go see an integrative dr next. Nobody knows why I have these symptoms. Some are new...ie...raynauds. Some have been present since injury i.e...cognitive. I will continue my quest for answers. I took a break b/c I got tired of the lack of answers. The exercise intolerance is enough to drive my quest. Thanks again for responding. 

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Hi,

 

I read your initial entry and it was like reading my own. I get really dizzy when I'm tired, have not eaten all day, or stressed.  Excercise tends to kick in the endorphins and I feel good when doing physical activity.  Only thing is I feel like crud after.  I never feel 100% anymore.  I accept that but it really stinks.   I've learned a lot too but what a way to get an education!  

 

I am a bit over four years from mine and I wish a lot of things but lucky I can still do what I do..  

 

Iola

 

 

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On 9/16/2017 at 21:20, Margaret said:

I can't exert in exercise. When I do I am feel very sick and dizzy. Does anyone else have this problem after being out so long?

 

Hi there

 

Yes I can completely understand where you're coming from.  I used to jog, swim and do step aerobics three times a week - I can't even run now without my head vibrating and starting to feel sick.  I'm 11 years in now and it was the hardest thing for me to come to terms with.

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Hi Margaret, I will also be 3 years in November and feel exactly the same as you. Never feel 100%, head is always a bit off at best and stress, worry or doing too much has a major effect on my rather fragile brain. Tried an exercise DVD on Thursday morning and head's been sore since! It's so frustrating and gets me down as it's so difficult to plan anything as I never know how I'm going to feel from one day to the next. 

 

I'm back to work 24 hours over 3 days but it takes its toll and I usually spend the weekend trying to chill so I'm fit for work again the following week. 

 

It's always with you, the worry that it could happen again and I worry about the effects the headaches will have long term, but it makes you really appreciate it when you do have a good day!

 

Learning how to manage it is key, but it's not easy and I'm still learning!

 

Take it eady and be kind to yourself.

 

Gillian

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I posted about a seminar that the Brain and spine foundation ran earlier this year, one of the sessions it seems is about exercise post SAH and they have made the slides available which may help some of our members. 

 

https://www.brainandspine.org.uk/sites/default/files/documents/Fatigue and exercise presentation_Laura and Matt.pdf

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Hi Margaret,

 

Yes I suffer this with intensive exercise.  I found the only way is to change what I do.  I now exercise less strenuously but for longer periods.  Have a break and then do a bit more.  Intense exercise is not an option anymore for me.

 

I am seven years out and I became disorientated during sessions, and it felt as though someone was popping bubble wrap under my scalp and I still get that now if I do too much.  I use it as my signal to stop.

 

If you do the same as you have been doing, you'll get the same results, so, as you rightly point out, you need to change it and manage it.  You might need to do this by trial and error until you find something that works for you. 

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