Can anyone please help !!!!

[Gazzer]

Hi all i am Gary's partner I have been reading this forum with Gary since he joined.

I am looking for some advice from anyone that can help us . He has recently seen his consultant who has told him to come of his meds after 8 weeks. He said he been on them to long and should be weaned of them.

The meds he taking at the moment is a mixture of three different types of oxynorm and gabapetin . He cut out all tablets except nightime pills which is five in total. He is now into his second day and seems to have had a massive setback in what he can do and how he feels.

We are not sure if this is symptoms from withdrawing from pills or is that his pills have been masking his symptoms while been on them .chas anyone taken these meds for same length of time and if so how was you told to approach coming of meds .

Also I am thinking Gary's is starting with depression from talking to him last night.. He has told me he has no interest in anything ( including me) he does not stop from waking up he just keeps going telling me he is ok but I can see him slowing down as the day goes on untill he physically can not do anymore then it puts him on a downer as he is so worn out and gets upset as his ability is not how it used to be obviously from his Sah. .

He is is pushing himself to hard and I no this is so wrong which is upsetting him aswell. He has to do things and go out as you all properly no it's hard staying in and you have to have some normality in your life to stay sane.

I no he finds this site very helpful as so do I as he is on it quite frequently .your advice from his last post he found very helpful and encouraging as he got no advice when he left hospital and all his symptoms he got when he left hospital was quite worring untill we found this site so thank you to you all for and replays he has received it is gratefully appreciated and does put both our minds at rest .

Edited May 11, 2013 by Karen
added line spacing/paragraphs for easier reading

[NeilP]

Hi Garys & Partner. 8 weeks after a SAH is still early days. I'm no doctor so and never took those drugs so can't really offer any help there.

It is really hard to tell if how you feel is the drugs, coming off them or the SAH. It's probably a bit of a mixture of all three.

I took Codine for about a year. At this point my wife thought that I should stop taking them. She thought they might be them giving me morning headaches and making me grumpy. She'd noticed the link, but after a year I was pretty defensive of my precious Codine up until the point that I stubbed my toe and reached for a Codine pill!

I'd wake up most mornings with a headache and reach for a codine which always fixed the headache. When I ran out of codine I started using Paracetemol for the morning headaches and after a few days they stopped. It wasn't the SAH giving me the headadches it was Codine withdrawal. I had a touchy couple of weeks but moods got better. I then found a couple of Codines in a drawer a couple of weeks later and took them. Woke up the next morning with a raging headache which gave me the answer. I feel better now for not taking them.

Just looked up the drugs you mentioned and one of them is an opiate like codine which is probably why the doctor is trying to wean him off. Perhaps gradually lowering the dose could be better option than stopping. Does he still need pain relief?

I find Paracetamol are actually a lot better than most people give em credit for.

The wikipedia page for Gabapentin says it "should not be discontinued abruptly after long term use." Pretty sure 8 weeks isn't long term but it could still be better to come off them slowly.

http://en.wikipedia.org/wiki/Gabapentin

I think you should have a chat with the doctor about it.

I honestly feel things will get better for Gary. A SAH recovery will not be rushed. and rushing it only makes it worse.

I still find A letter from your brain helpful.

[Gill C]

Hi Gary & partner

As Neil says 8 weeks is still very early days (insert scream of frustration here!). At that stage I was sleeping in until about 10 am & then having another afternoon nap & going to bed early. I was cooking a meal & partly looking after my then 4 year old but I wasn't doing much more than that!! Just getting out of bed & showering was exhausting. Try googling spoon theory & that might help you both to read it & apply it to your situation.

I remember Lin using the analogy of a broken leg in terms of what you should expect yourself to be able to to. You are expected to stay off the limb for 6 weeks & place no weight on it. Your brain has had a mcuh bigger trauma & is never totally silent so why do we expect it to heal so quickly?

The lack of initiation of tasks is something we've all gone through I think, I found it hard to settle to anything & couldn't concentrate on anything for more than a few minutes. If he sets small daily goals & records them he can then look back & see how far he has come, sometimes we miss the improvements cos they happen so gradually.

I personally had a lot of help from Headway so it might be worth you seeing if there is a branch in you area, they offer social mornings & maybe some course to help with what he is feeling (unfortunately the local one to me doesn't do them any more due to lack of funding). I certainly felt I was improving more when I joined them having thought I could do it all on my own.

I hope some of this helps & my other advise for him is to communicate with you, rest as much as he needs & drink lots of water to help with the headaches.

xx

[Daffodil]

Hi Gary and partner.

It's the most frustrating thing I've ever experienced in my life. The sudden shock of understanding that you can't do what you did. Might never do stuff again like you did and yet you so want to. Feeling youve rocked everyones ( and your own) world. The body and head is not willing to join in especially not early on. but over a year on and I'm doing things now that I though were out of reach but you've got to start small and slow.

The only thing that helps in this equation is time and that's hard when when you want to kid yourself that's you're ok. Pushing through it like we all do with mnor illness is not an option. It's not the flu Gary's recovering from, he survived a major brain event and I really urge him to talk to someone about that. Only once you accept it fully can you reall begin to heal. Headway is good or find a counsellor.

The medication will Have masked some symptoms from him. I think was on pain relief for longer than Gary after my SAH, i was in hospital initially longer though so thats the main reason but then after discharge I slowly extended the time between pills and cut out the opiate ones which was a process the pain clinic talked me through for reducing any reliance on my pain relief . I supplemented this approach With extra rest and sleep mode.

Is Gary having much pain? It's worth asking the doctor if they can look at some other options to help him manage this.

Best of luck. Its so hard for other halfs. Even now my husband looks at me with the ' I just don't know what to do for the best' look. The honest answer that I give him is that I don't know either so we just have to go with the wave and see where it takes us. Each day is an achievement though and brings with it a tiny progress but sometimes they are so tiny you can't tell which is why writing it down is a good plan.

[MaryB]

Hi Gary and Partner!!!

I just want to add coming off meds is a slow very slow process that can make matters much worse. I am not a doctor but in my own experience when I either ran out of meds or skipped a few days I ran into big trouble. I personally would have to wean off one at a time and it would take each one about 2 months I think. I cannot imagine doing it any faster.

I could not imagine weaning off all at the same time. I asked my Neurologist last week if the cymbalta is masking some of the neuropathy issues as I was on it 2 years prior to SAH, he said no. But my gut says different.

I understand we are all at a different place. I had to wean off pain medication about 4 -6 after SAH as I was having rebound headaches from them. Granted I think anyone coming off oxy is needed medical advice on doing it safely. I think I went off Gabepentin slowly and moved right to Cymbalta & I cannot recall how long that all took.

Good Luck, I hope things get better. I think it must be hard for a man to be limited at first but you know I am pretty sure all the woman in here are of the same fighter personality! I find it hard to not over do - I like to work hard. But I am finally getting a bit better at pacing???? Your partner is so early in recovery.

At 8 ish weeks I stood up and my foot broke. Although I am not very religious (more spiritual) I had to tell myself it was God's way of saying SLOW DOWN. I thought I was so strong and special I could beat this in record time.

We cannot rush a head injury - plain and simple. I learn that while recovering I made peace with so much in my life. I am finally at a point that I have no regrets, no remorse etc. I like the new me better and the time I had to BE STILL made me a better happier person and much more thankful for everything and less angry about the situation.

I must add at the time of my SAH I was so deeply sad about horrible events and such in my loved ones lives that I recall saying "Please do not put these people through one more thing!” I feel I took the hit in the old brain so save my friends and family from there constant banging in life. I know it sounds silly and cannot be true for things to work out this way but I am glad it was me and not my loved ones.

My dad was on disability and was given 6 months to live when I was 14. I look back at his life and what a crappy hand of cards he was given since birth but he was such a happy man, good spirit, laughed loud, and enjoyed the small things in life. He did not pass away until I was 35 years old and a mother. The lessons he taught me were that he was a fighter, he did not look back and feel sorry for himself he just did what he could and moved forward. I had time to really ponder that while I was in recovery and it gave me happiness and some peace. I am a fighter like my dad.

Good luck ~ Sorry to babble so much!!

Maryb

[Winb143]

When I weaned myself off pills I cut them in 3/4 then after a week or 2 a half, then a quarter and it worked but did it over a month or 2.

Going to be awkward if he is on capsules though.

Tell him he is better off without them but I guess he knows this already.

Good luck to you both and be happy xx

WinB143 xx

[paul99]

hi Gary and partner

stop what you are doing straight away the drugs were given for a reason its nice for the dr to say stop taking them without thinking of the consequences or telling you how to reduce them

GARY was given them for a reason and as he has been dependent on them in his recovery contact the consultant tomorrow even his secretary and ask how to stop taking them

some drugs have an addictive manor and will play havoc with Gary some drugs have to be reduced slowly smaller dose's until the last dose by your statement I would put Gary back on them until you have spoken to the consultant or your gp do not do this yourself please I know its nice to come off something you don't like taking but be wary of the side effects Gary could suffer .

take guidance please lin had to come off baclofen and it took over a year to reduce and wean her off and that was a small dose it as the drug has some nasty side effects the neurologist planned the withdrawal which was very convoluted believe me and having worked in the nhs for forty years I have seen many who have done the same with horrible consequences please contact the consultant or gp soon as you can please looking forwards to your updates take care

[Winb143]

Of course never stop taking medication without the Hospitals/Docs say so. It was given for a reason.

I assumed your Doctor wanted you off of them as you put it in post.

Always take advice from a Health Practitioner never from the web. It goes without saying always ask Doc/Consultant first.

As you put in your post :~

I am looking for some advice from anyone that can help us . He has recently seen his consultant who has told him to come of his meds after 8 weeks. He said he been on them to long and should be weaned of them.:~

Good luck Both and hope you get off them when told xx Listen to Consultant and Doc only.

WinB143 xx

Edited May 12, 2013 by Winb143

[Gazzer]

Hi its joanne.Garys partner. Thank you all for your kind words It is of great help as its so hard to find answers from anywhere.We will take on board all of your comments so thank you again.

Just to answer some of your questions firstly we are going to ring gp about medication as we are not happy what the consulton has told us about coming of meds as we are hearing some horror story's about these pills he has been told to come off from his consulton.

We feel the way he has been told to come off them is to quickly so we going to get further advice as it is upper most important that it done correctly .

Gary had a Sah 8 week ago has suffered greatly in many ways .Its so hard to come to terms with everything that's going on as he has so many different symptoms and is suffering .

His main question he needs to know is how long will he suffer and will he recover from all his symptoms . We know no one can truly answer this as everyone has a different case and different symptoms etc but if anyone out there can also give there outcome and timescale it might put a little light on this for him .

Gary we believe had a grade 3 Sah and wasn't operated on .THe blood surrounding his brain was in a large area and was told it would heal its self .

Where he had the Sah he was told the vain had completely severed and there was nothing to be repaired.This happenings in one in six people who suffer a Sah.He had four scans and two angiograms so we know there nothing else to worry about.

Is there anyone reading this out there who has had a Sah on same level and not operated on as I have described as he really would like to talk to someone who he could relate to.

Thank you all again and very best wishes to all you out there

Edited May 13, 2013 by Tina
Spacing :)

[goldfish.girl]

Hi, I have no advice on medications, only a GP or consultant can advise the way forward on that.

But, it's important for Gary to know that at 8 weeks into recovery - there is enormous improvement to come! It's easy to look back & see this, harder to see it when you are in that time & desperate to be well again. I think almost everyone on BTG could confirm that at 8 weeks you are so far from being well but that, with time & patience, what you can do at that early stage is multiplied massively as time goes on. If Gary can learn to accept that for now he is not well but that this is a temporary situation & allow himself to go with that & rest for a bit longer he will see improvements.

'Temporary' is the word to remember, it IS going to get better than it is right now. Always keep that in mind so that you can both keep your spirits up.

Michelle x

[Winb143]

I agree with Michelle.

I had SAH 4 I think? I was told I would not walk etc. and had my hubby thought of putting me in a home

thanks OT's! Not

It's a long haul but well worth it.

Glad to say that he never listened to them and I am walking a 60 to a 100 yards before back aches.

I am getting better with the help of my Family and I am pleased with my progress.

Tell him to keep trying and never give up, it has taken me from 2009 to get to here.

Good Luck

WinB143 x

[kpaggett]

Hi you two!

Coming off drugs was very challenging for me. I thought all my symptoms were from the drug side affects...Nope.

I too get slower and slower as the day wears on and can hardly walk to the kitchen right before bed. This time of night makes me very vulnerable to emotions. I cry so easily and get into this existential spiral sometimes. We've stopped watching certain TV shows as they ALWAYS made me cry. Try getting to sleep after all that stuff! I find it helpful that my husband and I both know this and when it happens we can identify it, but not judge it and just go with it. It finally gets over. It used to be 45-1hour now it is usually shorter.

I can empathize with the lack of passion. I still love my husband though, but I did feel that he should get rid of me as I was damaged goods. Now, I am so grateful he stuck it out. As I got more confident within myself, I became more confident with his love for me and mine for him. I still haven't exactly found a reason to live again. I guess that comes form almost dying. I feel it is OK to die equally as it is to live so this is sometimes are hard concept for my husband, but I think he tries to get it at least.

Keep working. Keep living. Keep getting better.

~Kris

[paul99]

hi Gary and Joanne

im pleased you going to see GP but I think you might be banging your head against a brick wall he will probably send you back to the consultant , can you phone his secretary and ask for him to put it in writing to either you or the GP so he is in the loop.

it takes approx. three to four months for blood to be reabsorbed into the body Gary has to learn to pace himself listen to his body drink plenty of fluids NOT booze lol listen to his own body telling him when he is overdoing things sleep when his body tells him you are still in the very early days of recovery you will have good days and bad and you will know when to push the boundaries and when to relax more

take one day at a time and no more slowly slowly catchee monkey and you will get there take care

[Wem]

Hi

Your story sounds oh so familiar. Many on here were released from hospital with either no advice or unrealistic expectations of recovery which, when you are unable to achieve those expectations, depression can very quickly set in.

Recovery is a very slow process and it is important that Gary does not push himself too hard. He is probably trying to be strong for you and he may well have a feleing of having let you down.

I distinctly remember trying to explain to my elderly father that I did not have any interest in anything (including life) when I was 6 months into my recovery. I truly felt that way, I felt completely devoid of all emotions. My theory is that this was partly due to the damage from the bleed and possibly partly due to a coping mechanism that had kicked in. If I remained in this emotionless state then the long, boring, and sometimes lonely days, were easier to cope with.

Never take reactions of this type personally, as he gets stronger and the light at the end of the tunnel burns brighter, his emotional state will improve.

I have always been a coper and protector of my adult children and elderly parents and the only way I could protect them from the enormity of the situation was to push them away, whilst I tried to lick my wounds on my own as an injured animal would. Thankfully they knew me well enough to recognise this was typical behaviour for me and they held my hand from a distance, always ready to run and catch me, should I fall.

This is a whole new expereince for the two of you, it is a very bumpy ride, but you can build a new life together. Different, but just as meaningful.

On the subject of the medications, as others have advised, speak to your GP and agree a witdrawal plan under medical supervision.

Keep posting, and take care,

Wem

[Louise]

Hi there, like Michelle 8wks is not time at all, this isnt like a bone brake its the brain it takes a lot longer to heal, there will be improvements some you wont notice as the days go on you'll begin to notice them more and more.

We all want instant recovery we've all been there believe me I was no different....

Good your going to the GP about it - I got told from the hospital to come off meds too quickly GP was furious..

Sorry i dont think I had the same but maybe someone on here will be able to relate to it hang in there.

I was told I would be 80% disabled but with a lot of hard work I'm not it always seems gloomy when your adjusting to whats happened but fact is every day there is impovements.

sorry rambling on hope you understand tho...

take care both

[MaryB]

Once again I am so sorry this has happened. There is no real time frame and we all heal different. That when will I recover is the million dollar question. I was told by my neurosurgeon it would be 3 months - but that 3 months was for the wound itself to heal.

I went back to work as a phase back at 5 months or so.There seems to be so little answers but we are all so different and no one knows what to expect. I have to say I was still having things come together after a year.

Wish there was a good answer we all ask that same thing. Some recovery 100%, some do not some are ok with disabilities etc. Good luck, you need a sound doctor that will listen and give you good advice. We all have changed doctors more than once!

Mary

[Gazzer]

Hi all

Thank you all for your kind words once again .We are so glad to have found this site as it is the unknown we are going through.

Gary been to doctors and we have sorted out his meds .Doctor was very good and is going to iliminate one thing at a time starting with his pills to sort out some problems he has .

Gary isn't having a good day he has done to much and pushed himself today and now has extreme fatigue headache etc.

We have rang headway today and they was extremely helpful to Gary .

THey explained things once again what were not sure about. They said to ring anytime with any problems .If no one is aware of headway I would suggest ringing as they are trained in brain in jury's and seem very much to no what they talking about .

Gary got answers within minutes about things he has been worring about ( growing hair,sex drive ,body temperature etc) Well worth ringing if anyone is unsure or anything seems to be worring you.They have information on the Internet about it also.

Best wishes to everyone xx

[NeilP]

Gary had a Sah 8 week ago has suffered greatly in many ways .Its so hard to come to terms with everything that's going on as he has so many different symptoms and is suffering .

I remember that! 8 weeks in I spend most of my days on the sofa going through it. Practically bed ridden in the front room.

His main question he needs to know is how long will he suffer and will he recover from all his symptoms . We know no one can truly answer this as everyone has a different case and different symptoms etc but if anyone out there can also give there outcome and timescale it might put a little light on this for him .

I can only give you my recovery. I'm 43 so we're similarly young! . Now the more I read the more I realise I've recovered pretty well but here's a rough timeline...

8 weeks

tough times. Headaches, dizzy, moods, depression, sleep for hours, what the point in all this!

3 months

I can start to read computer screen again without my eyes separating. I can work a little, I can go for a reasonable walk with the dog. Have to have a few hours kip afterwards though. Headaches are still there every day but not quite as bad. I think its a combination of the headaches not being as bad and me getting used to having headaches. I can hold a conversation for more than 5 minutes.

6 months

Fatigue is nowhere near as bad. I down to just an afternoon nap. I'm getting about 4 hours work done a day. Some days I feel like and can do more, but I don't. It'll only all kick off again tomorrow if I do. I get tired after I do things but I'm tired because I did something. I love cricket and luckily for me the Cricket Club were brilliant. I started playing again about this time. I got 'hidden' in the field and no pressure batting but it was marvellous to be back out playing. I'd be completely pole-axed the next day or 2 but it was worth it.

Started driving again.

8 months

Well enough to have a second anni clipped so back to hospital, then had a few months recovering from that. Symptoms kind of got worse but got better much quicker.

1 year

Nearly Christmas, head is settling down from operation and fatigue is lessening. Starting to be able to work 5 or 6 hour days. Had a bet with my Son that I'd loose 2 stone before the start of the cricket season!

Lots of parts off normal life returning. Can go out and have a game of snooker, the odd beer (only if the head feels clear and I've got nothing to do in the morning), doing a three mile walk everyday and eating well, trying to get the weight off. Even did the odd bit of jogging. I can now manage to work nearly whole days, walk the dog, not notice headaches and not even need a siesta, although I have become quite partial to a siesta!

1 year 5 months - now

I work around 35 hours a week. I play cricket every Saturday, I've managed to get a few rounds of golf in with my dad.

Try and get out to have a game of snooker most weeks.

I still get fatigued, I still get dizzy, I still have a headache at some point most days. I still have days/hours where the world can f-off, and I mean everyone, wife, kids, friends the lot of ya! They've got used to that, they know the angry monkey will be gone in a while and I'll be back. Oh and I lost the bet, I was half a stone short and we went double or quits for the last half stone for another month, lost that as well!

For me it really has been a case of understanding my new limits and pushing them back just a little little bit at a time. I learnt that the hard way! Enjoy and celebrate the successes but take your time. Did I mention take your time...

Will he recover from all his symptoms? Who knows? What I think he will do is learn how to cope with and manage the symptoms.

A symptom you can cope with is no longer something you suffer.

[Gazzer]

Hiya.neil Thank you for them words.Gary seems to be suffering the same as you once did. He was a very active person doing gym,jetsking ,running

And had a good social life so as you will well no this has hit him quite hard.Reading your progress is very humbling and very encouraging. Although we no recovery is different for everyone it is still encouraging so thank you again and am so pleased your progress has given you back your independence

Sending you very best wishes

Gary and JO