Two and a half years on .

[RB-R]

Hi everyone , two and half years on and still having really bad days . I suffer with dizziness , headaches, nausea that is debilitating , and fatigue . I have a long run of good days then I feel like someone drags me back to square one! Doctors can't give me any answers, just feeling very frustrated! Any advice or anyone else feel the same ???

[amexdm]

Hello RB-R,

Don't believe we've met but it's good to see you posting. I am 1 1/2 years on and have the same symptoms. I have headaches, some nausea but the big killer is fatigue. My legs hurt every day. Fatigue is like a 9 or 10 most days. Working full time doesnt help. I have a few good days but not enough.

I have given up on doctors except my pain clininc because I have found that for me the doctors in the USA don't believe my symptoms. My GP is nice but he doesnt know SAH that well. Not saying anyone should give up on docs thats just me.

If you have time, read some of the posts here, some folks are trying some meds for fatigue that may help. I'm sure others may have answers as well. You're not alone certainly. Follow the advice of your moniker RB-R Rest, hot Bath and Relaxation. Nice to see you.

David

[jord38]

Hi I know its not the same as my Sah was only 3 1/2 months ago but I suffer dizziness 24/7, constant head pain, nausea, heart palpitations, body pain and so tired, its depressing. Must be awful still feeling like that so long after, feel for you x

[Lin-lin]

Hi Rhi-rhi! Nice to catch up with the old gang!

I am no-where near feeling physically fine, but I am able to assess the reasons why.

I had a baby in August and I’ve not been right since. Thankfully I am well supported, but I’ve only been on my own for very brief moments since August because I can’t look after the baby on my own.

I have been very weak physically with stiff joints but my rheumatologist can’t find anything wrong; but I’m still being assessed.

It’s possible however that child birth and the demands of parenting are taking a lot out of me, hence why it appears that I’ve slipped back. In reality, I’ve probably not slipped back, but when I was a single person living alone, I was able to manage my fatigue to allow me to do things on some days and I therefore appeared to be getting better.

I wonder if you can assess anything about your life that may be causing you extra fatigue at the moment? Have you taken on extra commitments?

Lovely to hear from you nevertheless, but I am sorry to hear you are not feeling well.

L xx

Edited January 22, 2013 by Lin-lin

[Gill C]

RB -R nice to see you.

I can only say I have high fatigue levels, days where I am really tired I will feel dizzy too & very ocasionally some nausea.

Are you sleeping ok? bad nights certainly contribute to all the above for me & the longer it goes on the worse I feel. Are you also getting some quiet time during the day to regroup & rest? I still find if I have had a busy time that I need some quiet time on my own.

Are you working too? getting good breaks, keeping your fluid levels up?

Hugs to you as it can be very draining feeling this way all the time xxx

[Sandi K]

Hi RBR I've been wondering how you are. It's been a long time. Are you working full time?

I'm one of the people David wrote about. I'm taking Dexadrine which in Canada is normally prescribed for narcolepsy (sleeping all the time) and ADHD (to help with focusing attention). I've been taking a low dosage since September.

It has definitely helped me. It gives me an extra boost and I'm more productive during the day with fewer neurological symptoms and less fatigue. I can't say it has completely taken it all away though. I can still overdo it and I still feel the effects of overdoing it - but at least I can do more than I could without the Dexadrine.

Sandi K.

[Winb143]

I suffer with eatiing too much j/k !! Not lol

My legs hurt so bad on shins, could be where I was in bed for over a year, ?

We Will make it now sing and smile. when feeling better xx

Love

WinB143 xx

[RB-R]

Thanks everyone, well I have four children and I have taken more work on in the last nine months , it's all caught up with me!! Very depressing to go so for backwards when you think you have turned a corner!

Great news about the baby Lin , hang in there it does get easier

My legs hurt me everyday , and I ache across my chest very day , I've come to the conclusion that it is nerve damage . My GP has tested me for everything. I felt very dizzy yesterday and call into doctors as I nearly passed out , which has not happened before. My GP wasn't there so they just tested my blood sugars which were fine but my blood pressure was up 140/80 which scared me , but GP said he thought it was up because I felt unwell ???? But did I feel dizzy because my blood pressure was up ????? I feel exhausted today and have a headache , but nausea not to bad . Anyway back to GP on Thursday to check blood pressure .

[Lin-lin]

Given that you work AND have four children, I am not surprised that you are feeling somewhat spent. (Blimey, you went through childbirth four times!!! Give the girl a medal!)

Maybe the cumulative effect of increasing your hours over the last nine months has contributed to how you feel.

It’s also very frustrating to receive no diagnosis for your symptoms.

As a diagnostic measure, is it possible to reduce your work hours? (..always easier said than done.)

If it is possible to reduce your hours, you may have a better way of assessing whether your symptoms are owing to brain injury fatigue. A reduction in hours could alleviate your symptoms. This could tell you that you need to assess your levels. If you continue to feel the same on reduced hours, then you will know that this is perhaps something else in conjunction with fatigue.

Fatigue however can manifest itself in a physical way. I have felt physically rotten today by way of example. I’ve a headache, I feel dizzy and I’m very weak. But when you put it in the context that I barely slept last night (Osian is teething!,) then it begins to make better sense! Not being able to give into cycles of fatigue will affect a person; both physically and emotionally.

Continue with the GP appointments and with further tests. I am doing so with my rheumatologist and it is always wise to get things checked out. But I am always mindful that my body was compromised by the SAH and that fatigue may be the underlying cause of why I presently feel unwell.

Hope today was ok for you.

L xxx

[jillbb]

Hi Rbr. sorry you are feeling so rotten, You seem. to have an incredabley busy life, l know how tiring young children can be. The more l read tne posts on this web site, makes one realise a sah is not like a broken leg, it does not heal its self quickly. l keep thinking after a good couple of days l am nearly back to normal but then l have fatigue and head aches. I am also suffering from aches nd sore shins l put it down to having to carry hay to the ponies and sheep, we have a foot of snow here in tne Brecon Beacons. I was explaining to a frie d why l was unable to cope with serving on a comittee, and l said to her that l had an sah, she told me to say l had had a stroke, people understand that then dont expect. so much. l find it so hard saying no l can,t cope. good luck try and get the chi?dren to help you, lv jill

[MaryB]

I often once again wonder about the pain and the fatigue we suffer being similar to Fibro? I cannot stress enough how when I hear your stories it makes me go back to not having a name for my "pains and exhaustion". NOW after the SAH and stroke I am still that way but I believe the medication for my Fibro with it nerve blocking abilities help my overall body pain. My head/ mind are another story.

But the pain you all describe is what my fibro pain was like. My legs were so painful or so heavy I felt like I was walking in quick sand. They just ached and I felt like I wanted to wrap them really tight or punch the pain out of them. My feet hurt so bad it took a good ½ an hour in morning to walk correctly. Sometimes I need to soak in a hot bath with epson salts. Sometimes walking up the stairs I felt so weak that I may have a heart attack. If I over use a muscle it was killer pain like bursitis not muscle pain. It hurt to poke me in the arm – like with your finger.

My diet and sleep also have a giant impact on my pain. I feel so much better if I eat whole foods, fruits and veggies. Anything processed is awful for me as well as soda/pop/cokes, fats etc…. I ache so much more from messing up my diet than I thought possible.

I too take narcolepsy drug I started in Sept at my one year mark as I could not stay awake past noon everyday and it was a 4 hour nap. I take Ritalin and it helped a great deal in the beginning but now even at a higher dose I still am tired by mid day but most days I can stay awake. I wish I could function without medications and maybe I could if I did not have to work and life was a bowl of cherries!!

I cannot imagine working and having a family to take care of at home. That would be asking too much for my body. I worked a long shift and today I was so glad it was my last day as my head was over loaded, I could not read I was just trashed from doing too much. The noise was extra loud, nothing was working well. There is a point I feel like I need everyone to be quite and get out of the room so I can finish my thought or get into balance of what I am even doing.

Good luck, I say over doing it does not pay. I seem to be an “expert” at pushing myself but I am learning slowly.

Maryb

[MaryB]

PS.

I cannot cope with any outside of necessary activies - I go to water aerobics and that is it. WE go to dinner about once weekly I realize I cannot belong to any commitees and ever go shopping like I once did but once again with working or children at home it does not leave much room. Heck a trip to the market is like working 6 hours for me. I just realized I cannot look at stuff while walking so grocery shopping is a high level activity foe me!!

I know we are all at different levels of recovery and had different 'damage" etc. so my HATS OFF to those of you doing both!

PS Going for a massage is one of my favorite gifts to myself.

[KelBel]

Hi RB-R

Sorry to hear you are suffering so many debilitating symptoms. I hope you manage to get through to your GP to find something to help ease your fatigue.

Maybe you could print some of the responses from this thread to take with you, to make them realise that others are suffering in the same manner?

I have lately started to suffer fatigue again, but I do work full-time, I get to the gym 3 times a week usually, although not in the past few weeks due to pain in my arm.

I think my fatigue is from trying to do too much all the time, so I have been trying to rest up more. I have also had some stressful news to take in over the past few weeks too, so that has drained me too.

I do not know how I would manage if I had a family to look after too! It drains me if I spend more than a few hours with my 5 year old nephew... but I do love him!

I really hope you manage to get something to help ease you pain. You've got some good ideas to work with from this thread already

Take care

Kel x

[Teechur]

This post makes me want to hug you and cry for you and for me all at the same time. Monday is my one year "bleed-a-versary" and I'm sitting here with yet another searing headache that no one can find answers to. I'm so so sorry you're still suffering. I sometimes feel like giving up on doctors, then I have a day so bad that I am in bed the moment I get home (I teach and I'm out of sick leave with three left through June so staying home isn't an option). Other days I feel almost "normal" and am so thankful!

Over the summer I learned on an acquaintance ran a 50k on Sunday, had a major SAH on Monday and passed leaving behind two daughters and a wife. I had a lot of survivors guilt (we both are in a group called Marathon Maniacs). I don't have children just four dogs and a husband...no five dogs (good Lord...I can't even count). So unfair. So I try to remember, when I'm feeling despair over headaches to respect the memory of Pete and try to be thankful I'm alive.

Don't get me wrong. I think we have the right to mourn our previous lives, but it's just what I do for me because I don't want to spend two or three days a week in a funk. Maybe there is a way you can pamper yourself. When I had to literally drag myself to work before summer (end of school year), I would stop at Starbucks on the way home every day and get a tart and an unsweetened green tea lemonade. It gave me something to look forward to on the days I was barely able to function, much less teach. God bless my amazing students who were (and still are, even the new group) so patient and adaptable.

[kpaggett]

I find I get dizzy when my sinuses are blocked. I also get dizzy when I do too much. I'm not sure if you can test this for yourself with your busy life, but maybe take some days off and see. I REALLY believe that the slower you take it, the better. If you push yourself or think that you should be able to do something, that's when all the pain starts for me.

I went to the Detroit auto show one day and the lights/stimulation made the concept of 'Arms' feel like it was fading away to be like the concept of a tail...I have no idea what that would be like. All of this happened the following day. I rested and I feel fine now.

The fatigue, the pains, the dizziness, they have all abated for me in stages. However, they return sometimes and then I know I've overdone it.

Keep a time for yourself each day to rest and see.

~Kris