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  2. SAH/Stroke/CKD

    Hello all lovely people again! Apologies for having gone away for few months now! It was the kids holidays that kept us rather on the trampoline We got an appmt with the neuro radiologist ( after 2 cancellations) and they have started looking into the options the remainder of the partially occluded aneurysm. Coiling/Coiling with stent/Clipping eventually. We are getting the pre-assessment done and the team have mentioned that they will get us a date in October. The doctor told us that the coiling and stent will need 6 months of aspirin and the renal doctor is reviewing how is it going to impact the kidney function! Sandeep and I are both nervous(about the procedure) and looking forward to it, so we can try and start moving as we'd like to. I will post here if i get more info. Hugs Shobs xxxxx
  3. Today
  4. 9 months post SAH

    Hi Everyone Thankyou for all your replies and words of support, it does really help. Macca I wish I could reduce my hours. My boss wont allow an alteration in the shift patterns, it's 12 hours or nothing in that job, so I'd have to find another post. It's either go back to that job or get another one and do shorter shifts but more of them. Ideally I'd like to reduce my hours but as I'm living on my own I'm not sure I can manage financially. It's a massive worry. I think maybe I need citizens advice or something. I'll take a look at the 'back to work' thread though, thank you for suggesting it. Misty, sounds as though we both had the worst new years eve ever! I started to suffer with insomnia and poor sleep patterns about 2 months ago also. I found that I was exhausted in the mornings but could do a workout at 11pm. I seem to have made some improvement by forcing myself to correct my sleep pattern. I make sure I get up about 7am during the week and dont nap during the day so that I am ready for sleep by about 10pm and although I rarely sleep right through, it does help. Are you back at work yet?
  5. Hi, i had terrible panic attacks and terrible headaches and mine would come out of no where. This is not unusual for a person only seven months out. It's not unusual to get tired or frustrated. It's not unusual to feel like you have to push yourself back to normal. I work and exercise and run the roads and I never feel normal like I did before. It's taken me four and half years to realize I can't work back to normal. Just is not gonna happen. Try as you may what was is not anymore. But, we all press on and you will too and see changes that make those early days seem long ago.
  6. Yesterday
  7. Hi Zach, I am a bit surprised you are not being taken seriously when explaining your symptoms and experiences to the doctors. Whilst we are not medically trained on this forum, have any of these doctors actually carried out standard neurological tests ie checking your pupils and reflexes for example? Not all general practitioners or paramedics are clued up on bleeds to the brain and don't always connect the two with the symptoms they present. After all, similar symptoms can be caused by a whole lot of other conditions and I have read many a case where a sah had taken place yet was not initially diagnosed. In fact I was probably one such case. I too felt at the time that I was not being taken seriously and it was only through perseverance after several missed opportunities that I got to have a CT scan. ( I will mention that this was 6 days after the bleed, not years later although who knows, it could have been if it wasn't for me and my family being persistent) I will briefly explain what happened in my case although as you will appreciate, everyone's experience of a bleed on the brain is different. There can be similarities, but it all depends on the area of the bleed and the severity of it. Therefore symptoms at the outset, recovery and resultant problems can vary quite significantly amongst individuals. My subarachnoid haemorrhage was almost 9 years ago. I did not have the thunderclap headache which many sufferers describe, I did however start with a headache at the back of my head. Approximately 10/15 minutes later I experienced the sensation of liquid running under my skull. I don't recall any pops as such, but I do remember that my peripheral vision started closing in - the best way I can describe it is that it was like wearing blinkers like on a horses bridle and they were being pushed together at the front until my vision became such that I could only see a narrow vertical slit of daylight between complete darkness on either side. It was at this point I thought I was going to pass out and die. Thankfully, within a few minutes, my vision corrected itself and being in the UK I rang 999. The paramedic who arrived did not obviously suspect a sah as he left after various checks, leaving me at home. During the next few days I had the most horrendous headache, could not put my chin down to my chest, felt nauseous at times, and just slept for most of the time. I did however ring the NHS helpline, visited a doctor twice and an optician and still no one thought or suggested I needed further investigation. I knew my head was not right, but why wouldn't anybody listen, or understand my concerns and try to find out what was wrong with me - it was like banging my head against a brick wall - in more ways than one! On the 6th day after it happened my dad rang my gp surgery and demanded I get further investigation asap. That got a reaction! I had an appt made at a neuro clinic in a nearby hospital that afternoon. At 9pm, after five hours of waiting, I eventually saw two doctors who said 'before we send you home, we'd just like you so see a consultant". The consultant decided to send me for a CT scan and that hospital is where I stayed for the next 11 days. Since having my aneurysm coiled I have at times experienced numbness in my arms, double vision once, multiple episodes of aura of migraine without the headache, fatigue, brain fog, memory issues etc. I do not have headaches or nausea though. It maybe the stress and worry of it are causing some of your symptoms, but if I were you I would keep on trying to get referred - although I would check if and when you get to the stage of a referral to ask whether a CT or MRI would be more appropriate. It may be worth getting your blood pressure checked regularly if you don't already do that. Wishing you all the best, Sarah
  8. Hi everyone, I have ZERO problem with paying for an MRI or CT scan out of pocket. My only issue is I can't get a doctors referral. I strongly believe that I have had a bleed that started 5 years ago, and the symptoms have gotten more intense since then. I won't sit here and name them all and try to convince you. I'm nauseous for a large portion of the day, have had muscle spasms in various places last for days straight, feels like it takes a few seconds to process whatever I am doing/seeing..change in gaze (the way my eyes look). I have good vision but I have this feeling like "I can't see". A tingly/burning bubble sensation in the right side of my head almost always, a tightness in the right side of my neck that isn't muscular, discomfort swallowing on the right side of my neck. In 2012 I felt a very subtle pop type of feeling in the right side of my head and began to loose conciousness, layed down and didn't go fully unconcious, but thought i was going to die for some reason. Ended up regaining conciousness then as I was walking home I felt the sensation of cool water pouring on the inside of my right head and within seconds the whole perfect right side of my body became numb, but not paralyzed...at this time I saw a very very VERY bright blueish white light FLASH like an aura around me. This didn't hurt but it was extremely peculiar and obviously a serious medical issue. Ever since then I've battled off an on with all the symptoms i've read described by SAH survivors. Most notably Apathy, feeling extremely weak, even trouble breathing, like I'm not getting enough oxygen I have been to two different doctors years apart and have been to the ER (by choice/walk in) 3 times since then and I have never felt I was taken seriously. When the topic of a CT scan comes up the answer always relates to my insurance, which is medicaid. I am still able to workout and I am a healthy looking male, but something is very wrong with my head and I am concerned for my life, honestly. This has been something I have dealt with from age 18- but the numbing event i described happened at age 19 and thats when things got realer for me. I DON'T know what to do. I CAN pay for an MRI/CT scan but I CAN'T seem to get a refferal and I've called centers near me (upstate NY) and they all say I need a refferal...because I guess a doctor knows my body better than I do. This is killing me and im 25 years old. Doctors don't take me seriously. I wait for months to pour out my heart in front of a medical professional. I explain my experience in vivid detail and I haven't been heard. I am more concerned about becoming disabled than I am dying. To wrap this up (and sorry for my frustrated tone) Has anyone here had issues like this? How did you deal with them? I feel unheard, this has affected my life so much. The past two days I feel nauseas almost all day long..and have been having trouble with balance. I feel like I must commit 100 percent of my attention to driving to be safe. However I have no obvious outward symptoms other than my eyes looking distant and the twitching that is sporadic. Thanks Zach
  9. Eye problems?

    Thanks Clare... I definitely agree. I'm calling tomorrow to let them know. It's strange how subtle things have changed but doctors refuse to acknowledge that it was possibly from the bleed. Frustrating!
  10. Last week
  11. 9 months post SAH

    Hi Kathie, Mine was New Years Eve too, and 9 months isn't long at all in the recovery after SAH. You say you don't feel ready to go back to a stressful 12 hour shift at work - and that worries you. I wouldn't be ready either - I think that is far too tough on you right now, and if I were you I would wait until you do feel ready. As Macca says - maybe you should think about reducing those hours, or finding a less stressful job. Stress is bad enough in recovery, but 12 hours of it are asking for trouble. I was told that it could take up to 2 years to recover, I'm doing well but am now suffering with insomnia. There is no way I would be ready to go and do a 12 hr shift. Wishing you well with whatever you decide - but listen to what your body is telling you. X
  12. Quadrantanopia

    My goodness Anne. I have just had my gallbladder removed. I was 34 when I had a stroke. That was two years ago. I had an Heminanopia that improved to a quadrantanopia after a few days. It’s now static. Let’s all keep our fingers crossed.
  13. Quadrantanopia

    Hi Kelly, Here is a bit of back ground to my case. I had the ‘stroke’ under general anaesthetic when I was 39 (gall bladder removal). I was very healthy. When I woke I was completely blind. After an hour or two it cleared to leave me with quadrantanopia. Needless to say I had to surrender my license immediately and have never driven for 18 years. I was a single parent at the time and life was very difficult. I am now 58 and have started playing table tennis, quite well actually, so it got me thinking that if I can do this surely I can drive, so I reapplied - Which I did in early August. They sent me for and eye test (I have 20/20 vision) and a fields test at specsavers, this was on the Monday and on the Wednesday I got the letter rejecting my application. Very quick! So……..I thought I would go down the exceptional case route and arrange the test I have referred to in my previous post. (where I have no missed points within the central area). This will be the extra medical evidence they say they need. I am hopeful they will reply soon but sounds like I might have a long wait. Reading the previous posts I am quite positive but also annoyed that I haven’t done anything sooner. For years I have researched this condition, the following link being a point of reference:- http://www.moorfieldsresearch.org.uk/orntemp/Quality/RGov/Guidelines/drive.htm They say:- ‘Where the driver has obvious field defects such as a homonymous hemianopia or quadrantanopia then no confusion arises and the licence is refused’. This statement is incorrect! Also with modern technology and driverless cars surely there are adaptations that could be made to make driving possible. Another tip is not to use comparison website for holiday insurance. They ask if you have EVER had a stroke but if you go to the insurance company website direct they ask if you have had a stroke in the last 2 years. I only realised this recently. Good luck to everybody Anne
  14. Quadrantanopia

    Hi Anne I see. I waited 7 months and the dvla have said now they want an independent opthamologist to see me. My loss is upper right. I missed this programme. Johnnie mentioned it as well. Goodluck Anne.
  15. Quadrantanopia

    Hi Kelly, I was told that I needed to prove I had 120 degree span. He said to do this do not focus on the orange light, focus on a point to the left and below the orange light. He said this was acceptable . My loss is lower left so that is why I was advised to focus left and below the orange light. I paid for the test, to go private it is only £20 and you get 3 attempts. I sent the results to DVLA last week, don't know how long it will take them to review my case but when they got the original test they were mega fast with the big 'NO' decision. I am on a mission now after watching the '90+ year old driver' program. Fingers crossed. Anne
  16. Quadrantanopia

    Haha. Thanks ClareM I will let you know. Xx Anne - I am interested in your comment ‘ specsavers were great in advising how to take the test and produce a better result ‘ I too took the Esterman visual field test at Specsavers. I wasn’t able to produce ‘better’ results. Thanks Kelly.
  17. Quadrantanopia

    Hi, Is Lynmac23 still around? I also have left inferior quadrantanopia. I have been to Specsavers to get another fields test. They were great in advising me how to take the test and produce a better result. One of my tests shows that have I have not missed any points within the central area. I have submitted these to the DVLA. Does anybody know - will this be sufficient to get my license back or will I still have to fight my corner?
  18. Jan

    "Struggles"
  19. Eye problems?

    I was wearing contacts when I had my bleed and went back to them some time after. My vision had changed and I now have differnt strength lenses in each eye. If they are not right go back, there may be something else they can do. It could be that the 'best' brand is not best for you. Clare xx
  20. Eye problems?

    Something definitely changed but doctors won't acknowledge it because my eyes are healthy and my vision is unchanged. Yet I find it weird that I've contacts for 20+ years before my incident and now my left eye needs a complete different diameter and curve to the contact and they give me major headaches. They changed brands but it's still not helping. So weird and unexplainable I guess. Thanks for your input!
  21. Hi Eric, Before I came on here I worried about my mortality ie would I have another, I think it is natural. As Clare has said, are you worrying about it happening again. I worried a lot about it after my SAH. My Daughter found this site it helped her and she showed it to me and it has helped me no end, as I saw people joking and getting on with life. I love this site as we have all been there and we have survived. So you are a survivor and when down think happy thoughts and I sing happy songs as stress is no good for us !! Poor Family !! Keep well and when you feel a panic suck a mint or drink water. You have had all tests so remember you can stop panic attacks. Neighbour was taken ill and it left him with panic attacks so I gave him a bottle of water and a packet of mints lol (For dry mouth). Good Luck Winb143 xx .
  22. Eye problems?

    Hi there Unfortunately no, I can't help you there. The only change to my eyes has been the curse of old age and I am now getting long sighted as well as being short sighted - in my mind that should mean that my eyes should meet somewhere in the middle and I'll have perfect vision again!. Have you had your eyes tested again for your contact lenses or just had a change of brand?
  23. Im almost 5 months out from my NASAH and have worn contacts for over 20 years. After my incident I found that I could not wear my contacts anymore at all or they would give me headaches and really irritate my left eye. I've been to a doctor and have been checked out. It seems that the left eye now needs a bigger more rounded contact and even though I now now have the prescription for them, I am still getting headaches when I wear them. I don't understand. The doctors say my eyes are completely fine but clearly they have changed. I went to the hospital that day in my contacts and ever since then I do not feel the same in them. They've changed the brand to the best and the fit is different now but I almost feel dizzy with them. Does anyone else have any experiences with eye issues they can share? Thanks
  24. My story up to now - Maria

    Thanks Paul and all for the messages and support. It's the only place where I pour my doubts and what it's going on because it's very difficult to explain to my family and friends what my fiancé Paul and I are going through. I don't want to sound despondent or whining either, you've all been or are going through the same or worse and I have to count as a blessing to be able to talk to my man who, some days, feels like talking and tell me how beautiful I am and smile at the new thing I have every day to explain to him, and other days like today is very busy solving business stuff so he will call me later before I go to bed as he used to do (wishing he could remember to do that.. . I leave my phone by my side all night in case one day he did). But the distance, this not being able to go and spend time with him as I need to do and not being able to get the news even the small ones as they happen is painful and very exhausting. So will keep working on the hope part and the taking care of myself too (I'll have a checking following my loved ones insistence.. Oh well), Take care, Maria x
  25. Quadrantanopia

    I love you two and your banter. Good luck Tuesday Kels, keep us posted xx
  26. Quadrantanopia

    Haha. Everyone calls me Kels I totally get what your saying. I’m probably being way to negative. Driving means the world to me as it does you and I just don’t know what I would do with a No from the dvla. I do know that people with our deficit have their licence and I agree everyone with this should be dealt with the same. I read somewhere that a person had lost the bottom right quadrant which he was told is worse and he got his back. I shall rely on you to keep me sane and positive. I’ll let you know how Tuesday goes. You can always email me if it’s easier. Kels.
  27. Quadrantanopia

    Kelly I note what you say about your Aunts vision but I am pretty sure that you and I have much more visual field than she does, or anyone with only one eye. If I put my hand over my right eye then I can see perhaps 40% of what I can see with both eyes open and therefore my view is that the rules just aren't fair across the board. I try to be positive and at no point have I thought that I wont ever drive again. It may take years but I love it so much that I can't countenance life without a car. If I get a no I shall probably use a lawyer to appeal as the rules have to be applied to everyone the same. It cannot depend on who at the DVLA is dealing with it and which doctors you use. The criteria are the same for everyone and if the criteria are met then the driving assessment should be made available to you. It really is as simple as that! The criteria are set by the DVLA after all is said and done. Chin up Kels!!
  28. Hi Eric I think it would help you to sit down and talk about things with somebody. Your docs are probably right that you are doing to much, but I can understand that keeping busy lessens the attacks. Are you worrying that it will happen again? I think that has always got to be on our minds but we need to try and accept it is highly unlikely. See you GP and see if you can get some counselling. Being able to offload your worries to someone else may help. Take care xx
  29. My story up to now - Maria

    Maria don't you ever give up or think of giving up. You have proved he is fighting his corner and enjoyed your visit so buck up and try to look at the positive side. I did that for lin and never gave up and had plenty of lovely moments and I would do it again if I had been given the chance. So look to a better future and some fun in the sun as time goes on sweetheart. Try and lift your hopes because nothing is final its just the start of the very long road to recovery hugs and cuddles xx
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