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Pixiemog

Anyone else have Neck/shoulder muscle issues?

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Hi there,

 

I'm new to this forum. Initially I wasn't going to look too much into sah recovery, since I didn't want to cause anxiety or fears about what to expect. I know we're all different & I've reached a point where I just need to ask other sah 'recoverers' this question....

 

Have any others found that, since the bleed, neck & shoulder muscles spasm or ache, a lot?

 

I had a coil fitted on the 18th feb this year (2014) & things have been tedious as I'm sure many of you will be aware. However, I've been making strides as much as I can, initially coming off as many of the medications as possible, which has helped me a lot. One of the things that has been the most trouble for me has been the relentless onslaught of neck/shoulder issues, which I never had before.

 

To begin with I actually thought it was one of the meds, so I came off it. There was an improvement for me, but I'm constantly plagued with this neck issue & feel that it must be related to the sah? (Central nervous system and wotnot)

 

I've never been so ergonomic in my life, trying all sorts of things to try & help it!

 

I've also had a constant issue with a "headache" (but its not really like a headache as I'd have known a headache before the sah) that starts in the neck - especially if my head is very slightly down. (Again, I'm suspicious of it being a muscular issue)

 

At this point, I suppose I just want to find out if others have experienced this?

 

I've yet to go for my follow up scan since I got lost in the system & accidentally discharged. My gp sent a letter & I need to chase it up. My reason for delaying is because travelling in a car brings on something I can't even describe, it's a very very weird sensation that starts, I think, where the brain stem begins in the back & travels up into the head. It has improved somewhat over the last month or so, but I have a bit of a fear of it! I feel certain it will go but I'm not sure why I feel so sure of this. (Hopefully intuition & not wishful thinking).

 

I did do a search for muscles, but haven't found any similar experiences from others stories?

 

I hope all who've posted & read are constantly improving. I met a lady a few weeks ago who had a sah over a decade ago, she was a wonderful person for me to meet right now because after about 1+yr, she felt more or less normal and pretty good. She said that in the years since it happened, she is BETTER than she was before the sah because the recovery made her make a lot of good changes! She goes mountain climbing & kayaking & is a true picture of health & vitality!

 

I just thought I'd add that in at the end, since I found it helpful & encouraging. :)

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Hi Pixiemog,

 

I had my SAH in November 2013, and have had headache and neck issues similar to those that you described. For the headaches, I was referred to a headache clinic with the neurologists (as opposed to neurosurgeon! ), and it turned out that I had a migraine related headache - but completely unlike any migraine I'd had before. Although it did mean more medication.

 

One of the hardest things that I've found since my SAH is that my headaches are totally different to the kinds of headaches that I had before. A couple of times, I've ended up at A&E, just to get things checked out. Hopefully I'm now more able to recognise the headaches that I can get now , usually if I've done a bit too much.

 

I also saw my gp about neck pain. I have had neck pain since the SAH, and can't put much pressure on my neck - lying on my back is not fun. My gp got in touch with the neurosurgeon, who added a neck mri into my 6 month head mri. They think that I've got some arthritis, irritated by being immobile and turned in bed (immediately after the SAH - I couldn't move much for about 5-7 days ). But I think there's more to it - like you, I think there's something related to the nervous system.

 

Mine has seemed to ease some with time, but I haven't found a solution yet. Any form of transport (but especially buses, buses are the worst!) does give me a funny feeling in my head, starting around the base of my skull. I often describe the feeling as if my brain were jelly in a bowl that someone is giving a good shake. I'm fine when I'm driving though, which is something.

 

Anyway, I'm not sure that will have helped you very much, but don't think that you're alone in moving forward after your SAH. Good luck!

Fiona

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I had my SAH 7 weeks ago. Compared to others I have healed quite quickly. I had my 5th CTscan and it came back normal. My neurologist said amazing. Its like really bad to normal. I have no lingering headaches. I was taking a lot of Tylenol every 4 hours in the first month. But gradually weaned myself off of it. I was very weak and tired and dizzy. Still a bit dizzy and they say it could be my high blood pressure pills. I had quit taking my pills 3 weeks before the bleed thinking I was so healthy, taking supplements, working out and feeling great. Then kapow

Biggest headache and stiff neck and pain...Thank god I made it 1 block to the doctor's office where they called an ambulance. Almost 2 weeks in 2 different hospitals I went home.

Now I have such a hard time sleeping on my back or right side. It hurts and my head feels like pressure. I put my left arm under my pillow and now it so sore and I wake up with it aching and almost asleep. Does everyone have a sore head and neck after this?

I cannot complain as I have no neuropathy symptoms. I have strong legs and arms and body. Each day i can do a bit more. Never quit driving but took 6 weeks off. I am very aware of all the chit that caused me to have this. Stress I created all the time in my own mind and always having to be busy. I crashed and believe me could do nothing. Life has a way of kicking you in the pants for you to listen. I respect my body and rest and take things slow now.

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I know all about neck pain.

 

I am almost 3 years on and it tends to come and go even still to this day only a lot less often.  It was constant right at first.  I tracked mine and found that it didn't seem to correspond to working out or sleeping long or short or what I ate or what pills I took.  It was just there.

 

Then it began to let up for a few days only to return with a vengeance.  Then it only happened at night when my overall body was getting tired.  I say my body because I wasn't always sleepy.  I still get this symptom at night sometimes, I have positions that I assume that take it away.  I learned them in yoga.  (I can describe them to you if you like).  It seems for me, that if I activate the muscle that is hurting by using it even though it hurts more, it alleviates the pain sometimes.  Either that or I'm stretching a muscle that is the reverse like triceps/biceps.  This is hard to do with the neck, though.

 

Fortunately, if it gets bad, I can just bear it all day and then take a tylenol (US) at night and that helps me sleep.  I used to wake at night in pain sometimes.

 

Mine has substantially gotten better, but it is prone to flare-ups now and then.  I hope yours can get to a even plateau quickly.

~Kris

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Hi Pixiemog I also only come and go on this web site. Not very good on computers so I mostly read the posts. I had my SAH 18mths ago for the past 6 mths I have had increasing neck and shoulder pain. I had slight stroke down my right side which has caused weakness , during the last 6mths I have been looking after my elderly Mum which has required lifting I feel this has contributed to it.

 

Last week I went to the osteopath as it was getting me down head aches just as you so well describe I have also constantly, it has been far worse, although now it is beginning to settle down, in desperation I have booked an acupuncture session this Wednesday will let you know result. I wake as now with head aches and neck pain, just a relief to find I am not alone.

 

I try really hard not to complain. But at times as yesterday I had become really tired and I just did not know how to carry on. The difficulty is unless you have experienced an SAH nothing visibly shows, the fear if one complains is of being a bore so I just keep plodding on, finding my voice goes, ie I start stuttering and getting quite confused. I am sure tiredness contributes to these pains, we are not the same as before, I am begins to start to say I can't ! Sorry a bit of a ramble 4 am, still good to find I am not alone love Jill
Ight

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Yes I have had this ever since my SAH . Shoulder pain under my right shoulder pain, always that one never the other and it radiates up that side of the neck. It's Like a stabbing pain which takes my breath away. No docs think it's connected to SAH or my shunt but I didn't have it before., like you I cut out all pain meds once I felt I could as I felt the amount I was taking and my tolerance to them was hindering not helping me which means when I take one now it does it's job.

 

It has got better with time and the pain is not as frequent and my headaches have really subsided as well in that time but when it comes I have to be still , I rub some medicated gel on it m get a heated wheatie bag on it and then rest, it's all I can do. Like kris I tried to find a pattern or trigger and there just isn't one, I tried to link it to rational reason, failed at that too so it just is and I am learning to live with it and I am much more active than I was.

I do think the weird muscle pain is connected maybe to where we had the bleed but that's just a personal theory I have no back up at all. The other theory from my GP is if the phrenic nerve has somehow been affected it could create referred pain...I guess I will never know ...I hope like the lady you met you will be back doing things in the future but maybe not for a bit. Feb isn't that far away in recovery terms and it was a good while before I had days when pain left me for a bit and I could just 'do stuff' without penalty , even now that's not always true but it's better than day 1, day 50, day 100...you get the idea.

 

Well done and yes don't google too much but the peeps on BTG are pretty safe, non alarmist just keeping it real :) take care.

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Hi there, warm welcome.

 

If your at all concerned about neck/shoulder pain see the GP/Doc it'll put your mind at rest...

 

Get it checked out..

 

Take care, & so glad that you found the site...

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Hi PixieM

 

After my SAH I remember nothing,  I had a shunt fitted for hydrocephalus and I was awake properly.

I had bad heads and I used to bathe scars/drill holes in warm salt water in case of germs.

My Mums old recipe for wounds.

 

See Doc and as my surgeon said to me "Do not Stress as stress is bad for you".

I wake up each morning and think happy thoughts, some mornings are harder.

I sing and drive all mad, even on here lol.

 

 

All the Best

WinB143 xx now head up and shoulders straight !! You will  get there as I did and they said I

would never walk again,  60 yards to 100 so far !! mini steps for some giant ones for me.

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 I cut out all pain meds once I felt I could as I felt the amount I was taking and my tolerance to them was hindering not helping me which means when I take one now it does it's job.

i'm really fed up with the headaches never been one to get them before my SAH. i too have stopped taking pain relief as i found it never touched it and i'm not happy with the amount of paracetamol i was taking.  i've also stopped taking my anti depressant tabs as well, in a controlled withdrawal, i was on 200 mg and took them down by 25 mg a month now off them altogether.  ( this is the end of my first week)   i wanted to be able to cope with the brain changes without chemical attachments. the side effects are bad but it will be better in the long run as then i'll know that anything my brain throws at me is the SAH. 

 

i too am have problems with my neck. i just can't relax it i've tried all the relaxation methods i know and just when i think i've relaxed them i realize they are still tight. i've been reading up on headache clinics and thinking of asking my doc. to recommend me to one.

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I think antidepressants aren't they for pain relieve also!
 
Maybe you should speak with your doc just to get it checked out Ametrine...
 
take care

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I have a lot of neck/shoulder pain and daily headaches. The pain is much stronger when I'm at work and so Occupational Health did an assessment on my desk and computer but all was ok. I recently had 11 weeks off sick and though I still had a few headaches, they weren't daily and the neck/shoulder pain vanished completely and so I assume it's related to using my brain too much and for too long perhaps.

 

The pain starts at the base of my neck and by the end of the working day, it has spread down my back and into both shoulders, though usually worse on the right side. It sets in and nothing shifts it, massage, hot baths - nothing! It also affects my sleep as I cannot get comfortable. I've spoken to my GP and have been given some stronger painkillers as ordinary pain relief didn't help at all. What a difference this has made to my day! It's hard enough getting through a day at work after sah without being in constant pain too. Perhaps you could speak to your GP and see if there is anything they can help with?

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Oh my Gosh! I wake up EVERY MORNING with outrageous head and neck pain.  I'm so tired of it!  I'm taking Oxycodone for post-stroke headache and still wake up wallowing in pain.  

 

Example of my new sleep pattern - Last night I went to bed early as I was bored to death.  I took my medication, read for a bit, and then turned off the lights about 9.  10:30 I was up roaming around in the living room.  11:30 went back up and slept off and on until about 5:00 when I gave up and came downstairs for coffee.  Somehow this last usually stops my head and neck pain for a while.  Now I will be tired around 10 or so and will lose some daylight napping.  Very annoying!

 

Sincerely hope all are doing a little better every day with their pain and sleep problems.

 

Carolynusa

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Carolyn,

 

I fall asleep after my hubby leaves for work, or I sit here doing arm swings as my arm/shoulder joint hurts.

 

it does get better but it's time and we feel like we have had enough of being ill.

 

Remember we can make it now do the smile exercise.   Good luck.

 

WinB143 xx

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Hi,

I hope you are doing better but I have to say after a year and a half headaches, stiff neck, dizziness, and fatigue come and go. If I've done to much my brain shuts down, turns the lights off, and goes nighty night! If I push it, which I do on a regular basis, I get cranky like a toddler and have a full up temper tantrum. I can assure you it's not pretty. I lose focus and cannot think straight. It's tough.

Funny how I've read so many of us cannot sleep on our right side. I still can't. In the beginning I slept holding the back of my neck and rubbing my forehead all night. It took over a year for me to lose the heavy head and dizziness. It was gradual and then one day it was like it just stopped, for the most part.

It still comes and goes but nothing like it was in the beginning. It does get better but for me it has taken a long time to get over the actual event itself. Lots of prayer and these folks helped me tremendously.

"I"

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Hi Iola!  

 

Thanks for your post although I keep wishing you would fall asleep one day and wake up feeling fantastic!  

 

I hope you all will allow me one rant today about my head.  I try to stay positive but, as somebody said once upon a time, "it ain't easy".

 

My head by Carolyn

 

My head wakes up every morning in a great deal of pain which extends down into my neck.  My SAH was on right side but it is my left side that hurts like this in the morning.  Today it was so bad I actually came downstairs and took a pain pill immediately rather than wait an hour or so.  I have to admit it is making me really mad.  I have to admit I am pretty familiar with the "tantrums" you talk about, Iola.

 

I missed the thunderclap headache and the entire month that followed as I was unconscious.  When I awoke and got to look in a mirror I saw my new "head reality".  It was really ugly!  Giant scar from clipping surgery running across my forehead and atop my head where the lovely little shunt was placed; Right eye was drooping quite a bit; head shaved on right side, big lumpy looking things where the shunt was placed, etc.  Just beautiful.  Blah.  

 

Also I had a dental partial that was dependent on teeth on the right and one tooth on the left.  The tooth on the left was knocked out when I was intubated so I can never use the partial again thereby becoming even uglier and hillbilly-ish.  

 

During my waking hours my head does all sorts of odd things as I swear a herd of ants was implanted in there with the shunt.  Suddenly I will feel stabbing pain in my forehead; the ants will go on a field trip and march all around under the skin so no amount of scratching will make it feel better; the ants sometimes spill cold water from their beach pails and it runs down inside my forehead; sometimes they get in fights and just make my forehead hurt for a while.  

 

I hate the shunt.  I know, I know, I know...it is saving my life.  I just really hate it.  It is so hard to get comfortable enough to sleep for the hour or two I get at a time.  I miss lying on my right side.  And so on....

 

Anyhoo:  thank you for letting me get all that off my chest.  I really appreciate all of you being here and it breaks my heart that you have all endured so much.  I wish you all the best.  

 

I forgot to mention that the ants brought in their giant herd of cicada friends and those guys practice their chorus in my head almost constantly.  I can hardly hear anything.  Also my eyes are not what they were.  I am now using 4 different powers of glasses depending upon what I am doing.  Last but not least are my taste buds which alternate between allowing no taste at all or enhancing the taste to huge proportions, particularly if I am eating something I don't much care for.

 

Thanks a lot for listening.  I really do feel better for telling you all of this.

 

Love,

Carolynusa

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Hi Carolyn,

 

I'm in the U. S. As well. Good ole Maryland. I am sorry you are having such a difficult time. I do not have experience with shunts but many on here do and can help.

However, as for your outward view of yourself. Time is a helper. My mother taught me to present myself with confidence and a little makeup helped me feel good. That's my thing and I would put it on every day. It helped me see me again.

 

Your scar will fade and your hair will grow and you will get your teeth fixed. In the meantime do something for yourself to bring that confidence back into your life. It's a struggle but little by little and piece by piece you will start to see you again.

Iola

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Sooo glad to see this here!!!  Currently recovering from intracranial hematoma from a little under a month ago....my neck and shoulders are killing me.....seems like my neck pops and cracks a lot....

 

.I have went from being extremely active to hardly active of course due to my current restrictions so was thinking that had something to do with it....also breaking the whole OTC pain meds cycle and going through some rebound headaches....read somewhere that neck and shoulder pain is common with that too

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I had a lot of neck pain post bleed think a lot if it has to do with the whole trauma of the event. 

Take the pain meds prescribed by your doctor but if they don’t help get further advice. Don’t suffer! 

 

I got back to being active but had a good few months rest first. Take things slowly, you’ll get there. 

 

Clare xx

 

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I get clicks in my spine near neck but told Doc and he said "oh do you" So now I only mention pills and dose .. Had to put dose as couldn't spell doseage ..see lol xx

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