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Irene

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Irene last won the day on December 4 2015

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    North Yorkshire

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  1. 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.
  2. 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.
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
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