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Hoofbeat

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Everything posted by Hoofbeat

  1. Good luck Win - keeping my fingers crossed for you
  2. Teecher, thanks for your response - it's given me lots to think about! I've now been on the atenolol for almost a month and I have to admit the difference has been amazing! Whether that's purely a coincidence, I don't know but (touch wood) I haven't had a single migraine or a bad headache at all. Furthermore even my mild headaches have been virtually non-existent - I feel so much better despite being so much busier. However, like you I enjoy exercise (though the distances I run are significantly shorter!!!). I've found even running to the gym (1k) to leave me feeling very worn out, whereas I could quite happily run 6k before. I haven't even tried going for a longer run as when I slow to a walk I do feel slightly light headed (I also have to be careful as being asthmatic the atenolol negates the work my inhaler does!). I have been managing to work out at the gym doing plenty of weights without feeling any different and I can still ride my horse fine, so if it turns out that I have to choose between headaches and running, then I'll definitely choose to end the headaches and forego the running! I'm seeing my GP next week anyways so will chat to them about how I'm feeling on the atenolol (I was originally on one a day, but increased to two a day as recommended by my GP, but maybe I'll see if we could try one a day instead). If I do start getting these 3day blinding headaches again, then I'll certainly see if I can get referred to a specialist headache clinic. However, at the moment I do really believe they are migraines - the blinding pain is always the exact same side of the head, the pain is always predictable (as soon as the pain starts at the base of my skull I know it's a migraine and soon the pain has spread to my left temple), it is persistent, I feel sick with them, bright lights make my head worse and cold/ice seem to make it better. I did have a few similar bad headaches in the months leading up to my bleed but at the time always put them down to something else (e.g., I'd not been drinking enough water, or I had done >6hours of driving and was just tired), but now that I look back they seem to be the same. Also, my understanding is that migraines do often develop in women in their 20s, so I do believe there is quite possibly a chance that they are completely unrelated to the bleed (I understand my cousin used to suffer a lot with them when she was younger too).
  3. Hi Jan Welcome - I hope you find the site useful. I'm another person who just "happened to have a bleed" one day! I don't know whether it was from a vein/artery, but no explicit cause has ever been found for my bleed and no treatment was required - just rest. In my case the bleed was intracerebral rather than subarachnoid (which I think means mine was more serious as it was actually inside the brain rather than in the space around the brain), but there was no aneurysm found and the doctors have told me that we will never know for sure what caused it. They think it was likely I was just born with a deformed blood vessel (known as a cavernous angioma), but we can't prove that as all my scans are now clear. Like you I've just been told rest is all that I need - I'm at no greater risk of having one again and it will just take time for my brain to recover. Unfortunately my bleed was in the visual processing part of my brain so I have been left with a small loss in visual field, but other than that they are hopeful I will make a full recovery. I've just reached the 6month mark and am still suffering with tiredness and headaches, but I definitely feel like I'm now really starting to improve every day. What I've learnt most from this site, is that even if all the doctors tell you that you will be fine, recovery is slow. I kept thinking, I'm going to fight this and in 1/2 months I'll be back to my usual self and ignored the stories from others on here about how long it takes to feel more normal. Now I look back and realise I should have listened more - the recovery is slow, but we'll all get there eventually
  4. Hi all Just wanted to post an update. So I've had a few migraines the last couple of weeks and I still can't find a common cause (other than maybe doing too much!) so I spoke to the GP on Wednesday (a different one as my usual GP wasn't available). He suggested I be put on a preventative migraine medication to see if that makes any difference. He then checked the letter they'd received from my neurologist and this was also what the neurologist recommended if I didn't have much success with Paramax. Both the GP and neurologist thought that we should try me on Atenolol, which is a beta blocker (like what you suggested Karen). He's hoping that it will reduce the chance of the migraines occurring in the first place, but we have to be a bit careful as I'm also slightly asthmatic and beta blockers can set asthma off. However, we're hoping on a low dose we'll be safe and I'm to continue taking Paramax if I do still get any migraines. So I've just picked up my Atenolol prescription and taken my first tablet. The pharmacist assumed I was taken them for panic attacks, but when I told her my history she was rather shocked - not sure she's seen a 27yr old female who's had a brain haemorrhage before! Anyways, she's warned me that the medication will slow my heart and I might end up feeling very tired, so she's going to ring me in 1-2weeks to find out how I'm getting on with the medication. Fingers crossed! Win - I'm sorry I never replied to your post, I mustn't have seen it. I think Migraleve is basically the equivalent of Paramax + Codeine which I've tried but sadly it doesn't always work for me. I'm so pleased they help your daughter though as migraines are so horrible! I never really suffered with headaches until my brain bleed and I don't think I ever fully appreciated how ill my friend's must have felt when they said they had a migraine! I try really hard to stay relaxed and not panic (I'm not too worried about the bleed happening again as all my scans have come back clear now ) but it's definitely easier said than done!
  5. Karen, I'll speak to the GP about propranolol. Iw as just worried as it lowers the BP it might have a blood thinning property, which is something my neurologist is keen to avoid. Jess, I've already been on 10mg of amitriptyline since December to help with my sleep (initially 20mg), but I've been weaning myself off it as I don't like how tired it leaves me in the morning if I try and wake up early (but after 8 hours sleep). I'm starting a phased return to work and am trying to increase my hours slowly so have been trying to come off the amitriptyline (was down to taking it every other day). I did however start taking amitriptyline again on Sat and Sunday night to help with sleep and the pain.
  6. Thanks everyone, I already keep a diary of my life (I'm the sort of person that maps out their every move in a day in advance, so I can always look back at my calendar and see what I was doing before the migraine started) and other than the fact they seem to occur when I'm trying to do more, I can't see a specific cause. None of the usual food/drinks are the cause; I also don't think it's related to hot/cold (e.g., I never get them after going in the sauna at the gym!). I will definitely speak to my GP about migraleve as that doesn't appear to be an NSAID, but over the weekend when I took Paramax with codeine, which I presume is a similar effect to migraleve, it didn't make any difference. I'll ask my GP about propranolol but I wonder if that is a drug they will want to avoid (I have never had high blood pressure, in fact even during my haemorrhage it remained normal).
  7. Does anyone else out there suffer with migraines? Since my bleed 5months ago today, I've occasionally had horrendous headaches that last 3 days and do not respond to the usual paracetamol/codeine (both of which I very rarely take at all now). My GP and neurologist both think these are migraines as they always occur in the same location and only ever on one side of my head (the left). I also generally feel a bit "yuck" with them (sort of nauseous but it doesn't stop me eating and I'm never actually sick) and prefer to lie down somewhere in the dark. My neurologist isn't sure if they're directly related to my bleed or not - apparantly they're common anyway in females of my age but equally he has had patients who seem to develop them after a bleed (mine always start at the back of my head where my haemorrhage was). I was recently started in Paramax and for 6weeks or so this was great. I would start to get that migraine feeling, quickly take 2 of the tablets and thankfully the headache would ease before it developed into a full blown 3 day headache. However, Saturday am I woke up with the symptoms, took the Paramax and it didn't work. All weekend I had a horrendous headache and felt unwell and I still had the headache this morning, although it is finally now starting to ease. As we were away over the weekend (visiting our wedding location and doing the food tasting), I wasn't able to rest either which didn't help. I was just wondering if anyone else out there now suffers migraine and what you have found works for you? I'm booked in to see my GP at the end of this month, but I know she (and my neurologist) are reluctant to put me on triptans as I believe (like NSAIDs which I am also not allowed) they thin the blood. Given we don't have a 100% cause of my haemorrhage (it was thought to be a cavernous angioma), they don't want to give me any drugs that will make my blood any thinner. I've done some Googling, but I'm fairly sure that my migraines aren't related to food (I can't ever find a common factor) and the only thing I can think of is that they do seem to come after I've had a busy few days. I'd appreciate hearing from any other migraine suffers - have you found a cause for yours and have you found something that works to take the pain away?
  8. Hi Joanna I was taken ill abroad with my intracerebral haemorrhage, although the doctors did speak English and I didn't actually require any procedures being carried out, so my situation is quite different from yours. I was in St Lucia in the Caribbean when I suffered my bleed, but whilst the doctors did speak reasonable English, there wasn't a single neurologist on the island! As a result, I ended up being flown to Miami, US on a medical flight, where they had a lot more experience dealing with this kind of thing! I'm now at the 4.5month stage and still suffering with occasional headaches/migraines and fatigue, although I'm definitely improving. I've just started doing a bit of work from home a couple of days a week (my longer term outlook is a bit uncertain as the bleed was in the visual processing part of my brain so I have lost some of my vision leaving me currently unable to drive!). Have you managed to get yourself referred to an English speaking neurologist in Japan? That might be a good idea so you can at least speak to someone who can help with any queries you may have? Good luck with your recovery.
  9. Thanks both Daffs I've just read the thread you linked to. Was reassuring to see lots of you have had NPT, even if in some cases the results were not always what you had expected. It sounds like most of you have found it very useful, with it giving you all some tips on how to improve yourself etc Iola, I hope that I pass the testing as well as you did! I don't really feel like my bleed has changed my ability to think or process. It's more the headaches which lead to tiredness which in turn makes it harder for me to concentrate when my head is pounding! My neurologist has faxed all the information to BUPA, so fingers crossed they will authorise my NPT appointment soon!
  10. Hi When I saw my neurologist a few weeks ago, he gave me the all clear and confirmed that my bleed was resolving itself and there was nothing sinister responsible for it (he thinks it was most likely caused by a cavernoma). However, we discussed my headaches and tiredness, along with my return to work plans and he suggested I get referred to a neuropsychologist for testing. He said he felt I would ace the tests, but the results might give me some reassurance. Since then, I've also started taking migraine medication for the headaches (on his advice) and my head has felt better. As a result I've also started to have more energy, and I have started doing very small amounts of work from home ! I've just had the appointment come through for the neuropsychologist but have been told it's 3 hours long and its going to be a bit of a trek for me to get there. Also, I've just been speaking to BUPA and have discovered there are a few hoops to jump through to get this appointment covered on my policy (I can't afford to pay for it myself and I've heard the wait on the NHS is a while). I'm now in two minds whether to have the appointment or not - I know that my memory is fine and I'm pretty sure my only issues with concentration are a result of my tiredness (it's only when I'm tired that I struggle to concentrate). The fact my neurologist seemed to think I'd find the tests easy also makes me question how useful this appointment will be, especially as I have now started back at work and am increasing my hours slowly. Has anyone every had neuropsychology testing done, and did you find it useful?
  11. Have you tried American Express? I don't have a shunt but they were happy to give me a quote. Otherwise if you contact The Stroke Association they have a list of recommended insurers
  12. Hi Paul I've just gone past the 4 month stage after having an intracerebral bleed. I found the first 3 months hard with regular headaches. I kept being told to take codeine and paracetamol (I was already on Amitriptiline for sleep). However a couple of weeks ago I was chatting to my GP about my worse headaches when she realised I was now suffering from migraines rather than normal headaches! A chat with my neurologist the next day confirmed he thought they were migraines too. I've now got migraine specific medication and wow it makes a difference. Apparently a number of people do develop migraines after a brain injury (although they're also common in women of my age anyways so it might be a coincidence). Obviously we don't know whether you have migraines, but what I'm saying is don't be afraid of hassling your doctors about your headaches. Try and be really descriptive in explaining your pain to doctors - is the pain in one location? does it move? is it only one-side of your head? how long does it last? do you feel sick when your head hurts? Another useful piece of advice I got from Headway was to take regular 10 mins of lying down in the dark to let my brain have some quiet time throughout the day. Try and have a rest before you do anything too intense. Also, as hard as it seems some very gentle exercise is good for you - try going for a gentle short walk when your head hurts. And like others have said, drink lots of water, avoid caffeine and try to eat a, varied diet (but make sure you are also eating enough). Hope you feel better soon - everyone recovers at a different rate, but we all know that at some point we will feel better!
  13. I had an intracerebral bleed rather than an SAH but I asked my neurologist the other week if I could still have children in the future and he said sure! I did some googling and found various people who had had their children after their brain haemorrhage (sometimes they had a c-section to prevent them having an exhausting labour if fatigue was still an issue for them, but many had a natural birth). However, given everyone is different, I'd suggest you ask your neurologist for his opinion
  14. Hi Jill, I'm afraid I can't comment on my eyesight deteriorating, but I couldn't read your post and just run - I'm a fellow horse enthusiast too! I had an intracerebral (not SAH) in my left occipital lobe just over 3 months ago, meaning my bleed occurred in the visual processing part of my brain. As a result the bleed has left me with visual field loss on the right hand side. Whilst it doesn't affect me really on a day to day any more, I am currently battling to see if I can keep my driving licence. I have a vision test for the DVLA tomorrow, but won't get the results for a while. I am worried I will fail the test and they will take my licence off me. Currently I'm not allowed to drive under doctor's orders which means it's difficult for me to visit my horse (who is 18 and I have had since he was 4!). I can completely understand your frustrations with the long-winded DVLA process (it's taken thm 3 months just to decide to send me for a vision test!). I'm glad you are at least able to still participate in the pony driving trials - horses are great healers! Sadly I can't ride mine at the moment due to an unrelated wrist injury, but I've had the go-ahead from my neurologist to ride and have had a few sneaky sits on my horse! Try and enjoy your pony driving
  15. Hi Glyn I've hit the 3 month mark today and I'm still struggling to get back to work and back to much physical activity. I used to be very active (gym several times a week and horse riding the other days) but at the moment I can manage a 30minute walk, or 0minutes pilates, or a short gym session (20mins on treadmill, 15mins on exercise bike at very gentle speeds/resistance). Last week I felt stronger and started doing more but then this week I've had a horrendous headache for several days because I clearly pushed myself too much. If you'd asked me last week I would have seen myself going back to work quite soon, but the 3 days headache I had this week was horrific, and proved that I'm clearly not ready yet. Only you will know how you feel, but don't let anyone push you (especially yourself!) into doing too much to soon. I know it's hard when you don't have the money coming in, but in the long term you want to be able to get back to full strength sooner, and lots of the experts I've been speaking to say all too often they see people go back to work too soon, only to then burn themselves out. I found in the early stages that I thought "ah, I'm one of the lucky ones, I'm going to bounce back quickly", but 3 months in I've learnt the hard way that isn't the case It's great to be motivated, but I've found my motivation has just let to agonising headaches! I had a great session with my support worker from Headway yesterday and she basically explained I was doing too much even when I thought I was resting. I said to her I'd had a restful day today in front of the tv and she told me that whilst it might not feel strenous that really isn't that resting for my brain at all. Whilst watcing tv my brain was trying to listen to sound, watch the basics of what was going on (and I unfortunately have visual issues as a result of my haemorrhage), trying to interpret any emotions/body language in the tv characters whilst still looking after the rest of my body (breathing, metabolising, digesting etc!). So whilst I thought I was resting, my brain was thinking otherwise! She's suggested I try and take more actual breaks - only needs to be 15minutes or so sitting quitely with my eyes closed with no other distractions. She told me there's no reason to try and stop doing some of the things I've been doing to, as it's great to challenge/push myself (to an extent), but that the best thing I can do is incorporate more short rest periods. She also told me to be really strict about timing and think, right I'm going to do this for 2hours, but at that 2 hour mark I will stop and take a rest. I'm even going to set a timer to go off after 2 hours to make sure I'm strict with myself!
  16. Hi Glyn Welcome I still don't have a cause for my bleed yet (mine was intracerebral rather than SAH), so I can sympathise with the feeling of not knowing. As the others have said, take it easy - time and rest are a good healer
  17. Thanks Alison. I use a very similar approach to my pain killers too - my head feels so much better today which is nice. Am trying really hard not to overdo it because I feel better though! Sadly I'm not seeing the horse a great amount at the moment as we have flooding in our region of Oxfordshire so lots of the roads are closed. I was supposed to go to the opticians this morning but had to cnacel as the buses weren't running because the road out of my village is closed. Luckily my mum took me to saw him the other day and I will see him again at the weekend even if the roads don't open (we can take a much longer route). Hopefully seeing my lady from Headway this afternoon if she can make it through the floods (had to cancel 2 other dates in the last week because of the weather!) and have just heard from my neurologist's secretary that the hospital is going to be in touch shortly to arrange my follow-up MRI! Am absolutely terrified of having it done (I hate having MRIs!) and worried about what they might find, but it will be great to make some progress!
  18. Hi Kelly, Sorry to hear of your experiences - how scary! I'm glad you're on the road to recovery now and fingers crossed you continue improving. I'm afraid I can't help with the driving situation in the US as I'm from the UK and I suspect it's very different here. Hope you feel stronger soon x
  19. Both, thank you for taking the time to reply. I wasn't aware that codeine could excacerbate headaches. That is certainly going to make me more cautious about using it in future. However, I don't think that it's responsible for my recent headaches. During the last 3 months I have mostly only been taking paracetamol. I got prescribed codeine when my GP sent me to A&E just after Xmas when my headaches were unbearable (she was worried I was having a rebleed). They tried giving me tramadol but it did absolutely nothing for the pain whereas the codeine did help. Since then I have only taken about 2/3 codeine doses (again when I had a horrendous headache) until the other day when I began to get another horrendous headache (and have since been taking it for a few days). I'm fairly sure the horrendous headache was a result of doing too much (I felt so much better last week I started doing more). Finally this morning the pain has started to ease and I haven't yet needed to take the codeine again (just paracetamol). Thanks for the reminder about making sure I'm drinking enough. I've been trying very hard to drink plenty of fluid and I do think I've been drinking enough (I fill up a large bottle and make sure I drink all of that in the morning and then fill it up again for the afternoon). Wem I agree completely about taking in everything the "officials" say. I don't think my OH nurse had enough experience of brain haemorrhages (particularly in younger people), so I won't consider her comments as valuable as those of my consultants and my advisers from Headway/Stroke Association. Headway in particular have been great in their support and reminding me to not push myself beyond my limit, whilst also encouraging me to make progress
  20. Hi everyone Thought I'd do a little update. I had been making good progress (other than my vision) - my headaches were beginning to ease and I felt like my stamina was slowly improving, but then BANG yesterday I felt horrendous again I've clearly been overdoing it and now paying the price with a horrendous headache since yesterday morning (despite taking paracetamol and codeine). If I still feel really yucky tomorrow I'm going to go and see my GP and see if I can get any other painkillers as last night I was really struggling to sleep with the pain. I've also just had a meeting with an occupational health visitor and she's left me feeling a bit confused and annoyed! She was a former IC nurse and was shocked at the fact I'm still suffering with headaches and fatigue at almost 3 months! She kept saying you need to speak to your doctors and get them to investigate as it's not normal to have headaches and fatigue this long after a brain haemorrhage! I was so shocked - everything I've read and everyone I've spoken to (Headway and Stroke Association) said it's completely expected, but she was telling me I should ask my neurologist about them. Luckily she did however agree that I wasn't yet ready to return to work and has said we may have a better idea in 6-8weeks if I will return to my current job (as by then I should have had my follow-up MRI). In other news I feel my vision has improved a bit (but in the area not tested by the ophthalmologists visual field test) but its still an issue. As per my other post, next week I have my DVLA visual field test at a nearby hospital, so keeping my fingers firmly crossed for that.
  21. Thank you ever so much for all the responses - you have definitely made me feel a bit more calm about the whole thing! I have the test next Wednesday so please keep your fingers crossed for then!
  22. Hi SarahLou Thanks for taking the time to reply to me In actual fact the test you've described with the eye patch are the ones I've been having with my ophthalmologist, but according to the DVLA letter I received and information I've found online (along with what my ophthalmologist told me), the test I will do will be with both eyes simultaneously. I don't expect there will be any difference with the test being done at a hospital - I think that just happens to be the nearest place to me that is approved by the DVLA. I realise that I won't get a verdict on the day, but am I allowed to obtain a copy of my results (I'd be interested in seeing them and also showing them to my ophthalmologist)?
  23. Hi As a result of my left occipital brain haemorrhage it has caused me to have issues with my right peripheral vision. As a result the DVLA have summoned me to have a visual field test (at a nearby hospital optician) to determine whether I can still keep my licence. Has anyone ever done the visual field test for the DVLA? I understand you do it with both eyes and they test quite a wide field. The only visual field tests I've ever done are with one eye at a time. I'm really nervous about the test because I really really don't want to lose my licence (I've not been driving since my haemorrhage but my vision has improved slightly since it happened and I'm hoping there is a tiny chance it may still improve further).
  24. Penny - I completely agree and understand. I'm just interested to find out what others have either read about or tried so I can quiz my doctors about them when I next see them Mary - really interesting to hear your story
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