Head/neck ache, is this normal?

[ClareM]

Hi

I am sure there is a thread somewhere on this site about this but I can't find it!

 

I am 7 weeks post NASAH and progressing as can be expected. However the last few days I have experienced a lot of pain in my neck at the base of my skull. This is the area I felt pain in when I had the original bleed after the headache hit me. It seems to happen when I have been out and about so is most likely a symptom of fatigue. I am a bit worried though and wondered if anyone else had this.

 

It's like a dull ache in the centre that radiates up into my head. I can usually control it with Paracetamol but today it came back before my 4 hours were up so I had to take Ibuprofen. Does anyone know if Ibuprofen is ok as the hospital never gave it to me.

 

Any ideas gratefully received!

 

Clare

[Skippy]

Hi Hun

 

We can't advise you on the meds you can and cannot take - you need to speak to your GP.

 

I got pains in the same place after my bleed and I was told it was the blood dissapating back into the body.  My SAH wasn't at the back of me head though.  Please seek professional advice is you're unsure or worried about anything.

[Macca]

Hi Clare,

 

Good advice from Skippy above.  I'm sure others have come across this problem, but the advice from here is always the same.  Go back to your doctor or the hospital.  Just because it might be ok for someone else doesn't necessarily mean it will be ok for you.  You don't want to take chances.  Russian Roulette is for Russians, not us! (and not Russians who have had a SAH, I might add).

 

If it is causing you trouble, go and see them, don't be shy, just get there and get the problem identified, or the worry will get to you as well!

 

Good luck, let us know how you get on!

 

Macca

[Karen]

Clare, I didn't take Ibuprofen in the early months post SAH. I can't advise you on medication as you will need to check with your GP as each patient case varies.

 

However, are you sure that you're not doing too much and if it's happening when you're out and about and not at home then perhaps you're overdoing things, maybe a little anxiety kicks in and it's your brain's way of telling you that you need to rest? 

 

I would also suggest that may be a scarf around the neck and keeping your head warm with a hat may help with the wind and cold weather.

 

Also, keep yourself well hydrated with water .... I always used to carry a bottle of water with me to stave off the headaches. 

 

I was told that it can take 3 months for the blood to fully dissipate down the spinal cord.

 

7 Weeks post SAH is so very early in recovery terms, go gently and be kind to yourself. xx

[Winb143]

Hi Clare,

 

I have overstretched myself today not physically but mentally and my neck aches and my head aches. 

 

I have been up since 6am and do not feel right and head is thumping.  So I hope you feel better.

If not as others said see Doc as you will stress yourself.

 

I am going to have an early night.  Perhaps you need a sleep also ?

 

Hope we both feel better tomorrow and relax  and no stress. xx

 

Love

 

WinB143

xxxxxxxx

[Jcmatson]

Clare,

 

Sorry to hear your ache and am right there with you...I had a tough day yesterday after several good days strung together.  My NASAH was  a little less than four weeks ago and yesterday I had to get quickly to the ER when I suddenly began feeling woozy and light headed.  It was an odd sensation I had not felt in the past 3 weeks.  

 

At first I was embarrassed and wanted to sit home and "ride it out", but my wife was insistent that I should go to the hospital and get them to see me.  It turned out that my blood pressure did suddenly drop due to a overlap in pain meds that only occur when I put on a new pain patch.  I did not have any headache so I was not worried about another SAH, but I was unsteady.  

 

I now understand better when many of you have described the recovery process as "lumpy".  I sometimes simplify the fact that my brain is healing to be similar to a sprained ankle healing - each day it should get a little bit better.  But instead I am experiencing a string of pretty calm days interrupted by a new or different recovery sensation.  

 

One good thing that came from my ER visit was they were forced to take a CT Scan which I had been trying to get them to schedule for a week.  The CT Scan results came back encouraging - showing that the NASAH is healing.  I go see my neurosurgeon tomorrow to finally hear his prognosis and recommended longer term drug/recovery plan.

 

Hope today is good day...

 

john

[jess]

Hi there clare xxx

Ibuprofen I would strongly suggest speaking to your doctor and my reason for that is a few years ago they used to say that you could take them with a gap of about two hours between however new guidelines (from my doctor) states that you shouldn't actually mix those medicines unless advised by a doctor xxx

So don't panic but please speak to a dr xxx

[Carolynusa]

Hi Clare and the rest of you - Add me to the list of people who think you need to see doc.  Please.  I'm not embarrassed to keep asking question after question after question.  We need a professional and reassurance, help with meds, etc.  and will for a long time.  

 

JC - So sorry for your scare.  Good deal that you went to hospital.  Your wife is great.  Keep her to remind you that you are not superman.  

 

Take the best of care.  Love to you all.  Carolyn

[Jules]

I cannot take ibrufen since SAH but I thought in general you should not mix paracetamol and ibrufen so agree with above refer to your gp to be on the safe side

[Winb143]

Jules I couldn't take codeine after SAH.

 

Came out in a rash weird isn't it.

 

Hope you are on the road to recovery

 

Good luck

 

WinB143 xxxx

[Carolynusa]

Clare- my husband did look up your medication in relation to your illness and it seems not crazy at all.  I'm not encouraging you to not go to doc though.  You should always go to doc if you have concern - but wanted you to feel a little better about prescription.  We always look up our prescription when we get a new one.  Then ask doctor.  

 

Good luck feeling better and keep nagging those physicians until you feel more comfortable.  That's why they're there.  To help you.

 

Much love - Happy Holidays - and take care.

Carolyn

[misskdk]

Hi Clare,

 

I hope you are doing better and were able to see your GP. Let us know how you're faring!

 

 

Take it easy and stay "tuned in" to that spot in your head. Any noticeable change in pain is your body telling you that something is different.

 

We have all gone through so much and fought so hard to be where we are now, our lives are far too precious to simply sit back, wait, and leave up to fate.

 

I'll be sending many good vibes your way. Best of luck to you right now!

[kpaggett]

Normal, normal, normal.

 

I still get occasional neck aches and I am 3 1/2 yrs post NASAH.  And today, I got a bad headache brought on by several factors.  I take only Tylenol now...no Ibuprofen because it can produce thicker blood and it does in me.

 

I found that my pains gradually got further and further apart and reduced in severity.  Now I only get them when my brain decides that I've overdone things.  I sometimes have no clue until they hit.

 

~Kris

[Teechur]

John and Clare

 

You are very right that you cannot compare brain healing to any other type of healing. It's like a roller coaster, only with no rhyme or reason most of the time. Some days you can feel like you're finally getting back to normal, only to have three days of needing to be in bed or even UNDER the bed. Nothing is normal, but everything is not abnormal, if you know what I mean. You will sometimes feel like your skin is crawling with spiders, or not.

At times it might feel like someone is pouring water over your brain, or not. You may find yourself fatigued from a simple phone call to a stranger where a visit with a friend that is three times as long is fine. A "quick run to the grocery store" in your old mind is nothing. To your new brain (or new for now) it is a bombardment of colors, sounds, feelings, tastes, smells, and people that simply won't compute.

 

It's also multiple decisions that must be made that may take much more time than it used to. This will pass, but for now don't fight it, give into it and let it wash over you because adding frustration to the frustration only makes it worse. For me, I can run a marathon and feel great but have a conversation with someone on a stormy day and be slurring my words and have to hang onto walls. On a stormy day on Saturday where we literally had every type of weather except snow, I ran with a headache for 11 miles Saturday (I'm a running coach), but as soon as we finished I went home to bed. It was horrible.

 

As for doctor's plans, listen and take notes. Write down questions (or have someone do it for you) and take them with you. Remember, though...YOU ARE THE ONE WHO HAD THE SAH. With very very rare exception, your doctor has not.

One time my husband said to me, "But the doctor said your headaches would be gone by now" and I finally had enough of hearing that and said "Roy, the doctor has not had an SAH. She has only treated them and let patients be discharged. I have had one and am living with it. It doesn't matter what she's said or not." They can tell what to expect, in general, but since the brain has a (har) mind of its own, it will do what it will do. 

 

For most of us, life gets almost back to normal. I have a few deficits after three years of a minor bleed. I have a rough time with math, when it used to come easy. On a very clear head day I can do math in my head, but not most of the time. No big deal. I'm better off than most. I also still have a headache. That's worse, but it is what it is.

[Mandy Wright]

Brilliant post Teechur. That first paragraph sums up e situation perfectly. Thank you!

M

[Macca]

Teechur,

 

Great analogy and succinctly put!  Especially about the doctors!

 

Macca

[ClareM]

Teechur

 

Thanks for that, very well put indeed.

 

I spoke to my SAH nurse regarding the headaches and Ibuprofen in the end. The GP I saw soon after my hospital discharge was hopeless, kept me waiting  for and hour and then asked me why I was crying - by that point I felt like my head was about to fall off, a good enough reason to cry in my book - as well as being only 16 days post SAH!

Anyway the nurse specialist said the headaches in that area were normal and I was not to take Ibuprofen until I had had my last scan as it can cause bleeding. As soon as she said that I realised I should have known, I am a pharmacy tech! Makes me even more sure I am not ready for work!

 

As the time moves on and I recover from this 'event', I am beginning to wonder if things will ever be the same. 

I am doing more, even back to running with my dog even if it is only for half a mile. People ask how I am and I have difficulty answering that! I feel ok a lot of the time, get tired easily but it is so long ago that I was totally well (9 weeks today!) that I have forgotten what my normal well state was. Does that sound strange?

I recognise when I have done too much and stop and rest. But I am doing a lot more physically even if not mentally. I only had a bleed and hydrocephalus, not the clips and coils a lot of you have suffered. I feel lucky in that respect but still wonder what effect that bleed will have long term, or is this the long term now?

 

Rambling now but interested in any comments

 

Clare

[Daffodil]

Clare 'I only had a bleed and hydrocephalus' I had to smile at that as you play down a complication that in its own right could also have seen you off.

I learnt The procedure to place an EVD is considered by brain surgeons to be amongst one of the most complex because of where is has to pass to be placed in the ventricles so its amazing you are back running 9 weeks after surgery and so be proud of your progress.

Don't forget that in addition to the bleed you are dealing with healing from pressure on the brain from the hydrocephalus so just keep going gentle, there is no race, and you'll find your new normal in time.

[iola]

Hi,

I just hit my two year mark and I still have head and neck pain. Mine was an NASAH as well but you are the first, I believe, I ever met that also had hydrocephalus too with a Non aneurysmal SAH.. Wow! I've read about it but never met anyone. You are truly a miracle! I was told to never take any kind of blood thinner so I only take Tylenol.

I have learned the hard way that you will jump forward at some point and feel so much better and believe this must be it, the time has come, and I have crossed the bridge, and I will finally feel better forever now. Then, it rains for days or some funky weather system comes through and lays you out! You feel like you have just regressed six months. So, you pick up the pieces and start over. Frustrating.

Then there will be days you wonder what you did to deserve this? At least I did. Ugh. You push through and hope for better days and they do come and they go and come again. I am blessed beyond measure but Teechur is right, it really is a roller coaster ride.

I

[Teechur]

Yay Clare! I'm a runner too. I have found my times have slowed dramatically and I can't seem to figure out why. Headaches get in the way of my runs, but not so much that I can't run marathons. I am up to 109 marathons or ultra marathons. My headache doctor (she is a neurologist with a specialty in Headaches) prescribed running as part of my treatment plan because of the way it helps to release serotonin and dopamine for natural pain relief.

 

It also exposes us to Vitamin D, which we need for healing and more help with serotonin creation. (Well exposes us to the sun which allows the body to make Vit D.) When I run I feel like the real me. I actually ran with my walker. (I always worried that someone was driving by and thought, "That lady stole a walker from some handicapped person!" Haha!) I love nothing more than getting out in the woods with my dogs or with them and my friends. I actually feel like I think clearer when I'm running.

[Winb143]

Kris and Clare,

 

I was told I would never walk again by Physios and I today walked out of the garden centre.  No stick just pushing my chair and it's taken me since 2010 to walk. First small steps then longer  and then on my own, (I only use chair on long walks as back aches so bad.)

 

We will all get there and we all do it at our own pace as best we can.  Never give up as it's a long haul but we can all make it.

 

I think we have all come on leaps and bounds so lets all keep going xx

 

WinB143 xx

[ClareM]

Thanks for all your advice everyone, I will try and take note! Teechur I cannot believe you have run so many Marathons. My running cannot compare, my max is 10k which I did a couple of years ago dressed in a Santa Suit! 

 

I had an MRI scan yesterday, spent nearly 90 minutes in the scanner, think they must have had difficulty finding my brain! Seriously though has anyone else been in one for so long? They had to do 3 'special' scans on my upper neck any ideas what they were for? They only had to repeat one scan as I moved and I must admit I did not realise how long it was until I got out and my husband told me - I thought it had taken half an hour!

Getting up early for the scan absolutely wore me out for yesterday and today (had to be there for 8.15 and it's an hours drive!).

Will get the results on 28 April when I have my clinic appointment, hopefully as with all the other angios I had, it will be clear and I can go on holiday with a clear head - lol!

 

Clare

[Mandy Wright]

Hi Clare, I think at Wessex Neuro must book appointments for SAH sufferers, especially those of us from further afield, deliberately early as it reminds us we aren't really as well as we may think! This happened to me when I had my 3 month checkup too.

I haven't had an MRI since the original bleed and am due one at 6 months, so around June 16th I think. I hope everything comes back clear so that you can relax and enjoy your holiday.

Mx

[SarahLou]

Hi Clare,

I had MRI in March, I was in scanner for 1hr 10mins plus extra time for contrast to be administered.

I had neck scans, brain scans and brain scans with contrast. Have to say I wasn't expecting the contrast ones so that came as a bit of a shock. I would have preferred to have known before due to other health issues but they knew what they were doing and they talked through my concerns.

I had clipping surgery at The Wessex Neuro in August 2010.

I got my results a few weeks later.

I hope all your tests come back clear and you can cherish that much needed holiday.

Take care,

SarahLou Xx

[ClareM]

Just thought I would post an update  on my MRI scan and progress.

 

Scan results were clear no aneurysm or anything untoward so discharged and told to get on and enjoy life. Feel relieved though a little cut adrift. Apparently I had a large bleed that would usually be associated with an aneurysm, this in turned caused the blockage that caused the hydrocephalus. The reason I had 2 angios and and an MRI was to make sure there wasn't an aneurysm lurking behind it all!

 

I am feeling better, not so headachey and physically getting fitter. Back to running with the dog, still only 1.5 miles but getting faster. Did a Bodyjam class at the gym the evening after hospital results, quite energetic! Got a bit emotional at the end of it as I did wonder if I would ever get back to doing anything like that again and felt very grateful that I survived the 'pop'.

 

Off on holiday in a week and then back to work on a phased return. All seems like a very long time ago that everything happened and still feeling very emotional about it all. Hopefully that will pass.

 

I will keep looking on BTG, keeping an ear out for how everyone is doing, especially in the Green Room this weekend! (may have to make an appearance on the dance floor now I can Bodyjam!)

 

Thanks for all your support

 

Clare xx