hi all, I am 64 and had my strokes 9 years ago, I lost  the use of my left leg, arm and hand and whilst in a rehab ward I regained partial use of my leg i.e. I can walk with the aid of a stick, however since then I received no medical support at all  indeed wheever I mentioned any problems I had with my GP his stock answer was always "thats to be expectedafter a stroke" I have however learned to live with a dicky leg, useless left hand and arm along with the pain and discomfort from them, and to accept that this is now my lot until I die. however one problem I still have is what is a constant headache and the feeling that my head is in a vice, its difficult to explain but the best explaination I have found is that it is very similar to a hangover headache but it is constant, a muggy feeling with the pain, I have tried taking naps through the day yet it is still there when I wake, after constantly bombarding my GP with this he eventually gave in and I had a CT scan on my brain, which he said was clear, he could offer no further advice and I am still living with these 'headaches' and becoming worried about the number of paracetamols I am having to take, I am on blood thinning medication and tablets for blood pressure and wondered if these could be the cause. has anyone else experienced these 'headaches' and if so did you resolve them?

Hi mate


I had my stroke 17 months ago and have had a headache ever since, I have taken all different nerve painkillers and some were so strong but nothing has ever got rid of them. I wake up with one and go to bed with one no matter what I do, as you due to the fatigue I have to sleep during the day but that does nothing for the headaches. When I told the stroke doctor about these he initially stated that you don't get headaches after a stroke!!!!! Now 17 months later they are just as bad and can't get rid of them, I feel your pain really do 

Hi Dave

I had my stroke last September at 47. I also suffer headaches and I still get Nystagmus in my left eye (uncontrllable eye movement). when I spoke to my stroke consultant on my first review after 3 months, he told me that I didnt have a headache and dizzy spells (Nystagmus throws off my ballance) as they were part of the stroke and that I'm over that now. After a pantomime argument (oh no it isn't - oh yes it is) I was told to calm down (I did start getting shouty) and take some pain killers. As I dont want to be a walking rattle by taking too many pills, I have learned to deal with the pain with the use of amitriptaline, which I was on anyway. The other pain I have is a constant sunburn feeling on the left side of my face. My GP tried giving me pills for trigeminal nuralgia. These made no difference for the pain but sent me back weeks in my rehab. I could barely walk after taking them.

I still have this nerve damage and weirdly when I bump or scratch anywhere on my right side (arms, legs or torso) I feel it on the left side of my face where I have the sunburn pain. Its very odd.

The problem at the moment is the lockdown and isolation. I'm reluctant to contact the doctor because I dont want to be put on more pain meds. I have been referred to a pain clinic by Provide, so hopefully something will come out of that. If and when I can see someone face to face.

If you are still having pain after 9 years I am concerned that this will be the new normal for me. My dad had a stroke 7 years ago and is in no pain, but his mobility is awful. (100 times better than it was) but as he is in his seventies he has basically been left to his own devices. I.e. put up or shut up. I have been given a lot more support than he was because of my age. This seems very unfair.

Sorry, I could go on and on............

I hope you sort your pain issues Dave and take care.

Your GP sounds as though they are out of their depth, and have resorted by being argumentative, instead of holding their hands up and suggesting that maybe you need to see a stroke specialist or maybe neurologist.  Not very professional, and you need to seek a second opinion, there may be something that could help.  Can only suggest being persistent, contact the stroke team maybe?

Best of luck  

It's coming up to 3 years since my stroke, and for most of that time I suffered headaches and fatigue. A few months ago, I read a post on the forum suggesting vitamin B 12 being taken to help with fatigue problems, so I bought some Boots Vitamin B Complex. 

To some extent it's helped with the fatigue, but I'm also suffering far fewer headaches, so maybe worth a try...... at least it can't do any harm. 

Thank you.

Hi Andy thanks for your reply I too do not welcome the idea of too many pain killers but feel I have little option unfortunately I had very little support following my stroke, I had no physio, my OT would call every now and again and bring me yet more plastic implements to replace my useless left hand and my allocated stroke nurse was studying for another role and didnt seem at all interested and my stroke doctor was more interested in telling his collection of jokes about stroke victims in front of the young nurses than sorting out my stroke and I get the impression from my GP that he is not interested either so I am currently trying different pain killers mysef to find one that works

I too hope my situation is not a fore warning of things to come for you

stay well and take care

hi Mike, many thanks for that I will give this a try, as you say it cant do any harm

Hi Daveyt,

Just following up I complained to my GP about the stroke consultant she was disgusted I was sent for a second opinion to another hospital. The consultant there was as straight as a die, he said that they actually understand about 5% of the brain and everyone is different he does not know why I have headaches  but   says its a common symptom following the damage to the drain, it will be a case of trying different meds to get the best one. Wasn't the best news but at least he was honest he did say that there are a lot of professional consultants out there that will not admit that they do not know what is wrong, which I totally agree with. 

Stick with it mate good look cheers