Hi everyone, since his stroke December 2023 Alan has really suffered with banging headaches and the doctors just tell him to take paracetamol. Are the headaches and also wuzzy feeling normal and of so does it ever subside.
Short term memory will that ever improve? He can ask me the same question many times throughout the day.
The one really positive thing though and yes there is a positive, he is so very cheerful all the time and a pleasure to care for.
Hi Simon,
Alans headaches are every day and last most of the day and night. We went to see his GP this morning, went 2 weeks ago for the headaches and they prescribed Amitriptyline. This morning they have upped the dose but I am not too convinced that it is going to help with the headaches. Poor Alan I had to get him up at 7am to get ready for the gp appointment, he is not used to getting up before 10 ish anymore, so he had a good snooze when we got back. GP has also booked him in for a memory test, so lets see what that brings up and what can be offered.
What I have been doing with Alan is sitting and doing memory stroke books, plus laying down objects and removing some and he has to tell me what is missing. Some days I think I see an improvement but others days I feel as if he has slipped back.
I think that you do need humour otherwise we would all go mad and be depressed.
I work from home (fortunately) and I was speaking to my client today and she asked how Alan is doing and then she asked me do I ever ask myself ‘why me, why us’? and I answered honestly and said that question has never come to my mind and we feel so grateful for what we have and consider ourselves the lucky ones. There are people for worse of than ourselves.
@Sonia158 for the first 9 mo ths or so I had a permanent fuzzy / woozy head & l9ads of headaches. I thought they were never going to ease but they did. That’s not to say they’re gone completely as I still suffer but it just isn’t all the time. Fatigue makes it worse too.
An occupational therapist might be able to help with his memory issues. Sounds like you’re doing some good things to help his memory too.
There will be good & bad days. Fatigue plays a part in that but don’t be despondent as you’re still making progress over all. Progress is more noticeable if you track it from week to week, month to month rather than day to day. A diary might help with that.
Best wishes
Ann
Hi Ann,
I really wished that I had joined this forum months ago but at least I am on it now. The first 6 weeks you have OT’s and physios coming out but the that stops and you feel that you are left all on your own and nowhere to turn.
It is so good to be talking to everyone and I feel no longer on my own.
That is such a good idea to track weekly/monthly rather than day to day.
Did you find anything that you did or took helped with the fuzzy/woozy heads and headaches?
On a completely different subject I have noticed that Alan has lost his confidence which I know is understandable. He has not used the phone since his stroke, his brother offered to take him out to give me a break but he won’t go anywhere without me and yet sometimes on the rare occasion someone visits and chats with him, its like he never had a stroke and he is so chatty.
I had the 6 week initial support too but at the end of that they referred me to an OT. If this hasn’t happened for you then perhaps ask the GP if they will do the referral. They might after he has been to the memory clinic anyway but always worth an ask.
In relation to the fuzzy head. Other than paracetamol which I took for the headaches i didn’t find anything that helped. I literally just had to put up with it & i’d got to the point where I was asking anyone who’d listen how I was going to cope if it didn’t go away. No one could tell me.
My confidence took a big knock too. My hubby stayed with me initially but after a few weeks he had to return to work. He started leaving me for a few minutes at a time, the just slowly extended the time until eventually he left me for hours. When I realised nothing horrid happened when he was gone I started to feel safer and more confident again. Going out for me was (& still is) exhausting so i limited it but i did go occasionally. It’s one of those things that you just have to try.
Using my phone was another thing i found difficult. I had to build myself up to making a call…that took days sometimes & if I could do it another way I did. Conversations were exhausting initially too.
All of these things take time to come back but they should improve. I’m not sure i’ll ever get back to how I was pre stroke but life is definitely much better than it was.
Best wishes
Ann
Hi Sonia, just thought I’d suggest trying Magnesium Glycinate for Alan’s headaches. I’m 3½ yrs post stroke, and for nearly 3 of those years I had a headache/burning pain, at the top of my head and nothing shifted it. It was bearable unless I was stressed or extremely tired. When I learnt about magnesium helping with migraines thought I’d try it first rather than go back to the doctor. Anyway, it worked a treat within a day or two and its now my go-to treatment whenever it comes back. I took 2 x 1500mg tablets each day, I did try switching to Morrisons own brand of Magnesium 375mg for a time but it didn’t do anything for it so switched back to the MG. Initially I took it for a couple weeks but now only for 3/4 days if I feel the pain coming on. Personally, I’d rather take the magnesium than have the doctor prescribe something stronger than paracetamol, which might as well have smarties because they didn’t even touch the pain (which became an intense burning when stressed).
Its worth giving it a try but I’d speak with your chemist or doctor first. Its always good to let your gp know what non prescribed supplements you are taking anyway, just for their records as they can sometimes affect blood test readings.
And you’d do well to have a read through the Welcome post Simon mentioned above, if you haven’t already 
There’s a lot of useful info and insight there too.
For me, the fatigue kind of left sometime in the first 8mths, that or I’m just managing my days better. The fuzzy feeling took longer, more like 18mths; cognition took about 2½yrs to come back on board; and I’ve still got mild aphasia. Everyone is different and I’ve just given my time scales as an idea, this is a lengthy journey and there are no short cuts. The brain gives back what it can, when it can and in its own good time 
Where do you buy your Magnesium Glycinate from and what is the brand? Very keen to try this for Alan I will also tell my daughter about it as she suffers terribly with migraines. Do you only take it when the headaches are bad or do you need to take a dose daily? I will let his GP know once he starts taking them. I will read through the Welcome post as I haven’t done so already.
Hi Simon
I’m just wondering if they prescribe Amitriptyline for everything. They put it on my prescription as I have colitis, hasn’t done anything for me and that is why I am sceptical as what it would do for Alan.
We will try and join you on a Thursday as that sounds great but my laptop doesn’t have a camera and to be honest I am not too sure if it has a microphone. I will try on my phone. I think Alan will be sitting in the background as he has no confidence at the moment.
That’s a really good idea. I didn’t know that there could be a possibility of getting the GP to do a referral, definitely going to ask.
I cannot even begin to imagine what it is like to constantly have a fuzzy head and banging headaches.
As Alan has short term memory leaving him for even 5 minutes is not an option, I tell him if I am going into the kitchen or wherever but then pretty soon after I have left the room he is calling out for me and asking where I have gone. Tried leaving notes but if he doesn’t look at the notes then that wont work. I have to take him everywhere with me now to the hairdressers, doctors etc.
How did you manage to overcome your difficulty of using the phone?
Yes we have a Samsung phone and I think it would be great idea for him to you with me in tow just to build up his confidence.
You can get Magnesium Glycinate from most health food shops such as Holland & Barrett, but I got mine from Amazon. The brand name is SS Sport Supplies, theyre based in Worcester; and its Magnesium Glycinate with with added B6. Its a high strength 1500mg x 2 daily and these days I only take it whenever I feel the pain coming on and I’ll take it for a week.
I nearly cried with relief the first time I felt the recede. The pain was like a skullcap on the top of my head 
and it was a constant thing after my stroke for 3yrs. But when I the pain melting away it was such a relief:smile: And I was literally feeling the pain recede within hours of taking the first dose.
It was investigated, scans, blood tests, eyes checked, ENT…even had a camera up my nose 
They never found any explanation for it other than a post stroke effect which may or may not go in time. On the plus side, I did get a pair of hearing aids out of it which I think are a godsend:blush:…but didn’t nothing to cure my headache:roll_eyes:
Its not a permanent cure though, but at least I can get a couple of weeks pain free. And stress will bring it back quicker. We’ve recently had a couple of bereavements so I’m naturally back on them for a couple weeks now and I dare say it’ll be a couple more before I come of them again.
So its definitely not a permanent cure. And like everything else to do with stroke, no two headaches are alike. So let your gp know if you are going to test this out so that they can monitor the result too. You never know, it might be an education for them too😉
Good luck and do keep me posted, I really want to know if this is just a fluke on my part 
It mainly just got easier over time. If I needed to ring people like the GP i’d write down what i wanted to say first then take some deep breaths and go for it.
If it was to ring family or friends I started with very short calls & built the time up gradually. They knew I was struggling so were ok with me not staying on long.
I also found it easier to use the phone on speaker phone.
To start with if I could do something a different way I did. In time my confidence got better but probably not back to pre stroke levels yet.
Hopefully in time Alan will find his confidence again. Maybe try making the call to his brother on speaker phone with you there as well so Alan can talk as much or as little as he likes. If he hears you having a little bit of jolility he may just start to join in. Temptation might get the better of him.
Good luck xxx
Thank you, I have now ordered this from Amazon and I am so hoping that it works as well for him as it has for you. I will let his GP know that he is now taking them and yes it may well be an education for them as well.
I will definitely keep you posted on how it works for him.
I think also I may to blame a bit as he has become so used to me doing everything for him so in his mind there is no need for him to talk to anyone or do anything. I will definitely start putting the phone on speaker phone and perhaps even then walk away as then he will have to speak. I can’t even get him to answer the door when I am busy. Before the stroke he was a lecturer in Motor mechanics and was used to stranding up and speaking to people, not too sure if he will ever be going back to work.
What you suggest sounds like a good idea. My hubby provided me lots of help initially which I absolutely needed but as time went on I did ask him a couple of times to leave me to try as that’s the only way we can learn it all again.
I wonder if he has a bit of low mood ? That’s common after stroke & takes away some motivation. He might benefit from a chat with his GP if that’s the case. When you feel rubbish all the time it’s easy to feel low.
Best wishes
Ann
He says he is okay but I do wonder if he says that so as not to worry me. I have now arranged through stroke.org for him to have a weekly call from one of their volunteers and I will leave the room so that he can talk freely/ Its knowing what to do for the best for him.
A lot of people day lots of positive things about those calls. It’ll be great for him to speak to someone who has been through a very similar experience.
It sounds like you’re doing a great job for him.
Ann
Sorry to hear Alan is suffering banging headaches - over two years later and I still wake up with banging (back of the head) and splitting (temple) headaches with loud tinnitus. In fact for me the worst persistent symptoms of the stroke. The pain limits my cognitive ability, which slows me down in other areas. After many different medication changes, with my GP we have worked out the statin (I tried many) which I was put on (quite common after a stroke) has not been helping. I’ve just been put onto a statin substitute - Ezetimibe and I am pleased to report the headaches have subsided significantly. The challenge for me has been was it the stroke causing the headaches or the medication. The answer was probably a combination but good luck working it out for Alan. I’ve been assured they ease with time, but from my expectations it might be a while. Best wishes Rod
Hi Rod, I dont know how Alan, you and everyone else copes with the banging headaches. It sounds like you have a good GP which unfortunately I don’t think Alan has, never has time to listen and I feel like they are just hurrying him up so that they can get onto the next patient. Its only coming onto this forum and speaking to you all that I feel we are getting somewhere.
This community is by far the best place for advice and guidance - I have a terrific GP - I know how lucky I am. After writing I didn’t mention that I was at first put on Amitriptyline. Its a common medication for really bad migraine/headaches. I actually saw a Neurologist who told me that because I had suffered migraines before (in my 20’s - I grew out of them) the stroke had thrown them all back in the air again. I wasn’t convinced and she prescribed Amitriptyline. I know a few others have been prescribed that. One of the side effects is however more headaches… go figure - I didn’t get on with it (it makes you very groggy) but that might be worth exploring. For me there is a direct correlation between cognitive overload and headaches. I found that out on holiday where I did nothing but sit quietly for two weeks. No socialising no nothing. It wasn’t functioning normally but the headaches completely subsided. Some more things to perhaps try. Good luck to you both. R