Irene

Hi Gary, I had my SAH in September of 2015. It is a long time now but I had headaches for nearly 3 years, strangely enough they seemed to be behind my ear and into my neck. I was at the physio with my mother who was having physio on her hip, as we were leaving the physio turned to me and said, "I can get rid of your headaches". I couldn't believe it. I asked how do you know I am having headaches and she told, "By the way you are sitting and the position of your head". I thought I am getting a full check over. She gave me exercises for my neck, after her assessing me and I saw her regularly. My exercises would be increased and more added. Some lying with a towel under my neck, shoulders flat against the floor or bed, and chin to chest. Others sat up and movement left and right and also keeping chin in. The exercises where built up and I would do them 3 times a day. There were a number of them, not just those above. She also told me to drive with my hands at 20 to 4, rather than 10 to 2, thereby lowering shoulders and tension in the neck. I go back to see her whenever I feel my head, neck or back need her and she takes a Pilates class which I have been attending ever since. I certainly am thankful for her noticing. I had other issues with being tired, loss of words, I found making choices hard and concentrating and retaining information still hard for some reason. I have only in the past two years been able to read books again as I was finding reading a few pages was all I could manage. I find I fall asleep at the computer if I am on too long. Do take your time and don't try to rush things. Frustration makes you feel even worse as you feel low. I found coming to this website so helpful and I hope you find that too. All the best for you and have a good recovery. Irene

HI, Keep up the good work. It is so hard to make yourself accept you are not able to do the same as you used to. It is a slow process and only do what your brain allows you. If you feel tired, your brain is telling you it has had enough. One of the registrars in the neuro department told me to accept being tired as you have to remember the brain is actually doing all the work for the body, (making your legs and arms move, your mind to think and eyes to see), it has been injured and is still working but it needs us to allow it to rest. You will look back over the coming months, years, etc and you will be able to see the improvement you have made and be proud. I can look back after a year and 10 months and remember at one point I couldn't even do the shopping or use a bank card as the process was too much for me. I think my husband would be happy if the bank card memory hadn't come back! Look after yourself, we are all with you.

Hi Matjaz, I haven't been online for awhile and just checked in today and found your reply. I was really interested to read what your friend said regarding the headaches. Just recently I was in with my mother who was having some physiotherapy done after a hip replacement and at the end of the session the physiotherapist turned to me and said, "if you book in with me I could sort out your neck and headaches". You could have blown me over! I asked her how did she know I was having problems. I booked in with her two weeks ago and it was then she told me that it was the way my head was positioned and the way I was rubbing the back of my neck at the base of my skull that alerted her to my situation. I have been given sets of exercises to concentrate on adjusting my upper neck and hopefully we will get it aligned. I was a dental nurse for most of my life and I realise that the position I have had to hold my head over that time probably has not helped, but I never had lots of pain, it has only manifested after the bleed, and when I am anxious, stressed, or concentrate too hard it must affect upper neck which in turn creates the headaches. She has explained the artery going up into the brain and if it is deviated it could restrict blood flow etc causing a number of issues. I am pleased she noticed as I think I may have carried on just accepting it. I am correcting some bad habits and aware of my posture now so I will keep up the exercises and make some changes in the position of my head. It is fascinating stuff just hearing how one thing can tip the balance, certainly though the headaches came post bleed and in a whole area and in the exact area where I felt the trickling of blood over the surface of the right back of my head into my neck causing intense pain in seconds. I am still having MRI scans on, I thought it was going to be yearly but have since been told it is still 6 monthly as they found an area showing up on the scan which is not meant to be there, but it is nothing sinister, has nothing to do with the bleed and which they think I have had since birth, a possible hamartoma , which is a collection of some sort of tissue, so the neuroradiologist thinks. They are not going to investigate it, they are just monitoring it. I am not worried about it as the neurosurgeon isn't worried.

Hi Sami, Thanks for your response to my message earlier in June. It is so good to have others who understand, as I type this now I have the ache at the back of the head and as one person has said in a letter on this site, a "brain freeze" type headache behind my right ear. I am not dreaming or imagining it, but just accept it. I wish the consultants, etc would listen and at least accept that it is there post haemorrhage as I am sure others who go to their clinics must have similar issues. I had no post hospital instructions or information regarding the bleed and just found out from other hospital websites some of the after issues. When I mentioned something on the internet to the consultant, he rolled his eyes when I mentioned reading up information on the internet. If I was brave enough I would have said, "i wouldn't have needed to look if I had information at hand to understand I would feel like, this, that or the other. Never-mind, that time has past and we deal with what we have to, but I feel better knowing everyone here is so supportive. Irene

Hi, I am a year and 3/4 post my NASAH. I have had 6 monthly MRI scans to keep an eye on an area of my brain which is showing "high signalling". They say they don't know why it is showing that, perhaps it has been there all my life. I still have headaches at the back of my head where I felt the pain during my bleed and also a pain behind the right ear which as someone perfectly mentioned, a feeling "like brain freeze". The neurosurgeon does not think any of this worrying or a problem and he can't say if this is due to bleed. They are virtual saying they are not and saying it could be my neck. I never had headaches before so know that this is only since my haemorrhage. Just last week I got clearance to have a full year free from my brain MRI scans. I am pleased with not having to go back for a year and I realise I am really rather well, but I am not always happy with the response regarding my headaches and my struggles with finding words when I am anxious. If nothing can be found, age is brought into it. I went to my appointment with a headache and pushed directly on the spot but was told it could be neck and stress. I also mentioned that I get headaches when the weather is rainy or air pressure change and again felt rather silly. Still I have seen my advancement and very happy and grateful so I can't complain and what progress to have a year free from my hospital visits. Does anyone else have any of these issues? Irene

Hi, I am another one here who will say the pain down the spine into the bottom seems to be a problem post haemorrhage. It does go but boy it was painful when it was there. I don't think mine left until around 3 weeks. Never a problem later. Keep being positive, you will see over the coming months how you improve. The headaches change oVer time and you will notice how you are doing more. Rest, rest and more rest. Drink 3 litres of water a day, that is beneficial too. We will all be hoping you see improvements too. Listen to your brain, it needs rest, it is working extra hard just now, so enjoy these moments of peaceful times. love irene xx

Hi, Had good success with a company on Headway. Haven't booked it yet but got a quote in place, and under the right headings for the haemorrhage, also with me still having to have checks to keep surveillance on my area of high signalling, which is stable, I just feel more confident. I wouldn't want to go away with worries of insurance and is it the correct one. Being away from home for 50 days and helping my mother to move is going to be enough to think about. Many thanks for listening to a born worrier, Irene x

Hi everyone, Thank you again for the feedback, it is good hearing the different scenarios. I am so aware of how the insurance companies will want the right information that I am telling them everything the consultant has said and offer them the letters he has written so they know for sure, or I know I am giving all the information that I know. I was told the insurance companies wouldn't really be bothered with what the doctor says in the letters. I went to Canada in the summer and got my insurance so I will get it fine, just going for so long this time that I was checking if others had more information. Clare I will check about the discharge but I think you are correct I am still being seen. I have told insurance that too, I wouldn't hold anything back. I could never be dishonest as it is not worth it in the long run. As I said to my husband if I slipped on ice they probably would still look at my head and scans don't come cheap in North America. I shall continue to speak with different companies and shall see if perhaps one covers a Perimesencephalic haemorrhage. I shall see if Virgin do them for people not on their holidays Gilly. Have a lovely time away Super Mario. I shall let you know how I get on. Thanks again Irene

Thank you Susan and Clare for your feedback. My consultant always classes my haemorrhage as just a Perimesencephalic haemorrhage and not a subarachnoid and yes it was not caused by an aneurysm and my many scans show no aneurysms. I think I will be correct in confirming I had an, "Other", type of brain haemorrhage, for travel insurance purposes. I still have to have MRI scans every 6 months until the end of this year as a review to make sure the scans remain the same due to an "insignificant highlighted area", which the medical team feel is normal to me. I had my haemorrhage in Septemer 2015 and all is going well. Guess I should get my flight sorted then. A long stay in Canada is on the cards to help my 86 year old mother to move. Thanks again, it is good to hear that doctors think the same on that and like you Clare, he wrote the chances of having another one was highly unlikely. Kind regards Irene

Hi, When anyone has gone for travel insurance is a perimesencephalic haemorrhage classed in with the SAH haemorrhage? The people on the phones ask about, "any further aneurysms found", but there were none there in the first place. So confusing. Irene

What great news. Just to know you are going to see someone must be a lot off your mind. Looking forward to hearing how it all goes. What ever they find you are in with the right team now. Irene xxx

I went to Canada for 20 days in the summer and got medical insurance, didn't have an aneurysm, I had a perimesencephalic haemorrhage, (no known cause and chances of another are the same as everyone else). I am still under the consultant for reviews. I went to an insurance broker and he took all my information and he got cover. I was mainly concerned with medical cover and not bothered about cover for loss of goods. I go to my mother's in Canada so didn't need to worry about staying in hotels and travelling around. My cover if I remember was something like £180. I am heading back in February for 6 to 8 weeks so I am really going to have to hunt around for that length of time. If you find any good companies Deb can you mention on here, if we are allowed. I may do some phoning around this time. I always used to have a yearly insurance due to always travelling to Canada but that company couldn't cover me. I only used to pay £120 for the year before the bleed. I mentioned to my consultant, I said I went into hospital with a headache came out with paracetamol and now my travel insurance has tripled. It was the consultant who said to see a broker and take his letter with me to the agent, he always sends me a copy of the letter he sends to the GP. I am very fortunate to have someone who sees my side of things. His main concern of me travelling far was more me getting very tired. He always said tiredness and lethargy were the two things that could linger and that most people only return to 95% of their former self. (Think I am there). Irene

Hi Myra, Wow,3 months and back to work. That is early. I say that from someone who wasn't working and just trying to get on with life. I think you need to be so careful because I found when I tried to do a lot over the summer, I just got exhausted and ended up feeling ill, sickness and gastric problems and I needed to reassess how I did things and that was 11 months post my haemorrhage. Even now anxiety rushes in when a lot is put before me in one go. It is improving but I more aware of things now. I know in the States working procedures are so different to UK, we are very fortunate. Just check out what you are entitled to through workplace insurance, your own insurance etc. It sounds good to cut down your workload if it is possible. Your health is very important and these are very early days, you need time for your strength to build up and that includes your brain which is doing all the work. Take care Myra, Irene

I too had lower back pain, it started in the hospital and I thought due to the way I was lying, I never mentioned it to the doctors in hospital. It got worse when I was home and found even trying to sit was "a pain in the bum". I phoned the GP surgery to get a telephone appointment with the doctor to ask if this was normal after a haemorrhage. My doctor called me but she didn't think it was due to the haemorrhage, but to be honest she didn't,t know a lot about my haemorrhage and asked me about that. She did ask if I needed stronger pain killers and said give it another week. I did and yes by two weeks it was going. I would try to have a walk outside but even to step down from the curb it was painful. When I see so many people mentioning the same thing I think it surely must have something to do with the bleed and the affect it has on the nerves. I was was very fortunate with my bleed being a Perimesencephalic haemorrhage and didn't need surgery, I was able to cope with paracetamol and the odd codeine, but even codeine sends me strange so I took the regular prescription for that and tried to keep breakthrough pain away. Didn't always work I have to say. I hope all starts to correct itself soon and no lingering problems remain. Irene

Hi Sophie, I am so sorry I haven't been back on and responded to your letter on Tuesday. Please keep up with getting an appointment. Do as others say but do contact PALS in your area for help to just ask for any assistance. Explain all to them and your concerns. They are there to help Patients http://www.nhs.uk/Service-Search/Patient-advice-and-liaison-services-(PALS)/LocationSearch/363. In response to insurance. Yes, my perimesencephalic bleed did affect my travel insurance. My consultant told me to offer up his letter, which he sends both to my GP and to myself, so the insurers had the correct information. I wasn't allowed to fly for a short period, then he said just short flights. I was wanting to get to Canada so I needed to wait 6 months and then he said not to the west coast. His concerns were more due to tiredness. Everyone is individual and each have our strengths and weaknesses and depending what is happening in each of our heads the doctors will assess separately. That is why you must get checked out. Hospitals do not like complaints and they would rather try to correct something earlier rather than later, so don't hesitate in finding out where you go from here. One reason Behind the Gray is so good is that everyone has different experiences and outcomes, but we all understand the worries that surface today, tomorrow and for the future. The support on here is tremendous in knowing you are not alone when it comes to your own struggles, people here understand, so keep in touch. Push to get that appointment. I hope for your own peace of mind it will be very soon. Keep us informed. Irene

Sophie, I have just been reading all the posts on here and I just hope all is well with you. I suffered what is known as a perimesencephalic haemmorage, it is a bleed which they tell me has no known cause and no treatment. They didn't get to that point straight away. I got a sudden headache on the back of my head, within a second or two I felt which I can only describe as something like water trickling inside my head. Then pain in the neck and felt ill. I found it hard to walk, sit, stand or lie down, I phoned my husband to ask him to call me every hour to see if I was ok as I knew I was poorly but never thought of a brain haemmorage. He came home, but he was 4 hours away, I thought I would be OK, but I packed an overnight bag, he took me to A&E and got a receptionist who queried why I was there. I waited 2 hours to see a nurse who took bloods, checked my eyes and was so good to me, asking if I had been sick etc. I was beginning to get nauseous, and she said if I felt worse to tell the receptionist. An hour later I was feeling sick and couldn't hold my head up but I was the first person they called out of the 4 people she had checked obviously prioritising who was more in need. I felt awful for others who had been there before me. I saw one doctor, sent for ct scan which was then viewed by the duty neurologist at a different hospital, he said to get me across by ambulance. At that point no specific haemorrhage name was put to it. I was put in neurology high dependency unit and a doctor came to see me in the middle of the night and got me started straight away on nimopodine (? Spelling), just incase I had had an aneurysm. Next morning I was taken for a ct scan with contrast which showed no aneurysm but they continued the tablets for a few days, along with, painkillers every for hours. I was in hospital 5 days and not allowed to drive until the consultant gave the all clear and DVLA contacted them. So a lot of issues go along with any brain haemorrhage. I eventually had an MRI scan later that week which confirmed the perimesencephalic haemorrhage, so no operations, shunts, stents or angiograms. They think it was a venous bleed. But the fact is I couldn't drive until he said 3 months later. Now 15 months down the line I still have neck ache and twinges and continue to have MRI scans as they check something seperate to the haemorrhage but the fact it was so prompt at the start, everything followed through swiftly. I am sorry to ramble, but I think it is necessary to make sure about your condition as it could affect your insurance should you drive. Please follow things through, my family is full of medical professionals but they are none the wiser on specific neurology terms. They all hear of someone having an aneurysm, a stroke, a tumour, etc. etc. but when I mention a SAH or in my case perimesencephalic they have to look it up. I think even to phone PALS (patient advisory liaison services) they will help you take the next step. Please do this as recovery is slow and a tiring process no matter the severity. If it is not a haemorrhage then great, but you need to get to the bottom of this or to us with neurology problems get to the head. Irene

Hi Fiona and also Wendy, Please listen to your body, each of us is different and each of us have different issues, but one thing we all have is fatigue and that can affect your headaches too. Concentration can increase fatigue and also we can feel frustrated with ourselves, which again can increase any of the after affects. Read up as much as you can on this forum, it has helped me immensely in realising that what I have felt or sometimes still go through is normal and that is 14 months on. I said to my consultant on one visit, life has changed and all that seemed was that I went into the hospital with the worst headache ever and came out with paracetamol. (I too had a perimesencephalic SAH). He said that is what it seems like, but they can't say how long a brain takes to get over any trauma to it. He said it is the type of haemorrhage which has a good outcome, in relation to a SAH with aneurysm, but to be aware of fatigue and a person could only get back to 95% and one thing that people need to watch out for is lethargy. To be aware and not to let yourself get down. I hold those words in my head as lethargy can bring you down. I found on Southampton Hospital website some good information regarding SAH, it is a printout they must give to patients, I think it is on their neuro section. My hospital didn't give out any information. It is securing this information from all over which helps. Like yourselves, the GP asked me questions. DVLA are really good in answering your questions, you need to tell them, fill in some forms and they do the rest. They go by what the doctor/consultant say. I kept phoning them up and nothing was a bother. Fiona and Wendy, please try to have some help to get rest. People don't understand the injury to the brain, they can't see it but it is there and it needs its time to heal. You know how you feel, it is real, listen to your body and don't rush anything. Take care, people on here have been great for support, keep in touch. Irene

Susan, you are so right about the Perimesencephalic haemorrhage. The consultant writes up to my doctor that my neckache could be due to degeneration of the neck. Never had neck pain before. My headaches could be related to anxiety over me having to have further MRI scans due to an area highlighted in my original scans, nothing to do with the bleed. I asked him if he could name what was wrong with it and did it have a name, he said no, so I said well I am not worried. He sent in his letters I was anxious. The other thing was my sleep pattern, he put that down to having an hours sleep during the day, when I would drop off around 4pm. I really don't like to say anything, although he never asks how I am other that first greeting, and of course I am fine. The only thing he said was he can't say if the pain in the back of the head is anything to do with the bleed, and if it is how long it will last. He only mention that I should be aware of feeling lethargic, so I am conscious of that. Not complaining, I am here and would rather be the way I am, just think no one is listening. Tomorrow I go for my next MRI and see the consultant about 3 weeks after that, so that may be the last visit if the area has remained the same. That will be a nice feeling. It has been lovely seeing we are all experiencing the same things. We have each other for support. Must be off my laptop battery is close to shutting me down! Good night all, Irene

Hi Graham, i have to say it has been good reading your post and the responses. I had my Non Aneurysm haemorrhage on the 9/9/2015 and although I am managing very well I have this niggling doubt of 'am I just being lazy'? I know I try very hard to do things in a day but then feel tired. Like you and others there are odd pains in the back of the head, forgetfulness and a terrible sleep pattern. I know I have improved greatly but wonder if I am 'normal'. I am am grateful to hear other stories of those just over the one year mark to see that we are all showing more or less the same issues. I feel more at peace. Not a lot of information has been given to me by my hospital, most has been gleaned from this website. It has been a great help to read other people's stories and know I am not the only one who feels this way. I hope you continue with recovery, but if the little disturbances are a vast improvement on the year previous I think you are doing marvellous. Look after yourself, Irene

Hi Katy, I am also having extra MRI scans, I am waiting for my 4th in a year after having my initial one a week after my perimesencephalic haemorrhage. Just pleased they are keeping an eye on what ever they are watching. I have asked him questions and he answers me, he says as far as he is concerned it is ok, nothing there that he is worried about, but the radiologist likes to make sure no changes are shown over a period of time, and that is proving true. So good to know that they are working together. I hope you are reassured from your medical team. Regards Irene

Hi Jackie, I hope Bob is feeling more reassured, of course with any worries he can call his surgery and maybe his doctor will phone back in free time. I called my surgery 2 weeks post my haemorrhage as I had pains from my head and at the past of my spine. The doctor was not able to give too much information, in fact she asked me more questions about my signs and symptoms when the bleed happened. At least I felt I spoken to someone and it would be recorded on my records. The headaches eventually subsided over a few months, coming back whenever I was anxious, tired or just listen to my body telling me to go for a rest, which I needed every afternoon. Often I was found sat on the couch fast asleep! It is now over a year since my perimesencephalic haemorrhage, (one with no know cause), I still have moments where I am completely at a loss. My brain processes things fine but it did take time, and even today when I was trying to deal with a computer banking problem I got to a point where I had to hand over to my husband. Too many questions, too many things they were asking me to do all within a set time was too much. I had a melt down, but those days are months apart now. I look back and see progress and although may never reach 100% I am at least nearly there. As others have said the best thing is to continue painkillers, sleep can be disturbed badly so being able to be pain free will help with grabbing sleep during the day. Drinking lots of water does help, having a small bottle at his side will encourage him to drink it. Little niggles of pain behind an ear, sounds in the ears like an electricity hum or the "sound of the sea" in a shell are common. Odd tweaks of pain, nipping in the head or neck may also happen. These symptoms seem to be what most of us have. I hope Bob will take advantage of just popping in to this forum. It has helped me immensely to know I was not alone, especially in the middle of the night when I couldn't sleep. I hope he take things slowly and even if he begins to feel well always take things slowly and go at his own pace. We will all be looking forward to hearing how Bob gets on throughout the coming months. He will be grateful for the help of the family. Irene

Hi Georgia Gal, Just reading there about how you wonder if your dental implants could have anything to do with your situation. I am interested in that. I was a dental nurse and just take all dental issues as normal but I am going to ask my dentist and my neuro consultant about dental extraction. I had a rather difficult extraction from my lower right jaw February 2015, I had constant pain after and in the end got my dentist, (who had been my employer a few years ago), to make me something to go into the space as my jaw constantly ached. He made me a one tooth denture, which gives me relief when I wear it, but aches in the jaw when I don't. I unfortunately had my Perimesencephalic bleed on September 9th, 2015, prior to the denture being completed, the bleed was on the right side at the back of the head. On getting a dental check up this year I told my dentist that I still had jaw ache where the tooth was extracted and he said I could possibly have suffered nerve damage due to the awkward extraction. I can understand that, but have often thought nerve damaged was usually associated with numbness along the side of the face and it generally comes back to normal after a year. It made me think. I have to have repeated MRI scans due to an area which has shown up as "signalling" in the cerebellum, located around the area where I still get consistent head/neck pain since my haemorrhage. I am now wondering could this possibly all be linked? My dentist did offer an implant but I said I have had enough pain since the tooth started it problems until now that I don't want to put myself through anything more at the moment. It does make you think if anything can be connected. Have you found any good websites to look up information on these matters. I am so sorry to hear about your epilepsy and having to struggle with all of that. It makes life so very hard for you as I am sure you will be off driving again with it all happening. Take care and keep checking in, Regards, Irene

Hi Jen, glad you found this site, you will gets lots of support and information on how a NASAH can affected people in so many different ways and each person is unique with their recovery. I am a year to the day after my bleed and although never needed any intervention I still have tiredness, anxiety attacks when I can't seem to cope like I used to and difficulty finding words, my mind goes blank as I search around inside my head. I am finding, after a very busy summer of travelling, socialising and stress from outside commitments that my head is aching more and I am exhausted and I am reading that as time to adjust and rest. It is listening to the brain and body and giving it time to rest and heal. Drinking loads of water is a must, resting the brain too without lots of activity going on is good. I remember a young doctor in the hospital saying to me rest and rest, he said even looking out of the window is making the brain work hard as it actively processing every movement your eyes are taking in, then add in picking up a cup to drink, adds more to your brain. I made a point of keeping remembering that and to think how much my brain is working without me knowing and realising how hard that must be for the brain and how tired it would get. It is waiting and taking thinks at the person's own speed. For you it is very hard, to watch the unknown and have the reposnsibilities of being a wife and mother. The injured are taken care of, the loved ones need to make sure they look after themselves? Here at BTG people understand, feel free to voice concerns and worries, it certainly has helped me, as I had no information what so ever when I left hospital other than treating the headache, nothing to understand the little breaks in missing words, the frustration of dealing with not driving or just not putting something in the right place. Each day is a milestone for you both. Keep well Jen and hope your husband is home soon. Take any offers up of help to assist you. Regards, Irene

Hi Jimble So sorry to hear of the second bleed and now anxiety attacks. I hope seeing someone will help you and you can return to your cycling. So it seems you must be the one person my consultant who he had heard had a second bleed in all his 25 years! Hmm strange when I am sure we have possibly heard of others ourselves. Just so pleased you are here to tell us about your story. We need each other on here. Such support. The other thing I find hard to take is others telling us they have the same memory problems, getting old, etc and etc. I want to say it is not the same. I feel like it is a physical block in my brain, maybe only over what is a seconds in real time but it is not the feeling of "why am I in this room", or "where I have put my glasses". I have to stop, take stock, rethink what I was saying, then start again. I have found talking on the phone difficult with this as people can't see me taking time out and I then get confused. Maybe that will change, I am sure it shall. In the mean time, just remember we know how you feel and are with you. Hope you get some good results with the psychologist and you can move another step forward. In the mean time give your bike in peak condition for the future. Irene

Thank you Macca. Irene