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  4. Swishy

    RIORITA says oooops!

    Hi, I think many of us, perhaps most, had someone who was helping them as they navigated this crazy illness. I will say for me I think it is awesome to have carers as part of this site. Without those that helped us and loved us..well...for me...can't imagine...xoxo
  5. Johnnie M

    Medical Driving Assessment

    Fan bloomin' tastic Karl! It is such a buzz to read all that. I relived my own assessment of 2nd May as I was reading your excellent summary of events. Mine was slightly different in that I had to do a 'reaction' and 'decision making' tests on a driving test bed. Hitting the brake when you see a red lights (that was difficult because, like you, I don't have a full field of vision!) and hitting either brake or accelerator when certain combinations of green or red lights flash up. Reaction times were critical and a graph was issued to the DVLA of my results. I was surprised when told that the only real test of any importance was the on-road test. I am not quite sure that this is the case but I certainly started it with some trepidation and felt super confident when I got back to base. I was told I had done well and that it was a 'nice drive'. They seemed particularly impressed that I knew the meaning of a road sign (National speed limit on a single carriageway) but more so that I knew it was 60mph speed limit. I was told that most people don't answer that! Oh well. I also managed to spot a 20 mph speed restriction, which went down well. I am pretty sure that in a week or two you'll be back on the road again without restrictions. It's a life changer. I have been out pretty much every day since I got my licence back. Can't help myself!! Well done!!
  6. Finollie. If I now reading things correctly, you have had your licence revoked AFTER you had the Esterman test at Specsavers in May 2018? If that is the case then you need to get on to the DVLA to let them know that you would like to understand if you will be able to apply for your licence back under the exceptional case rules. I have already posted what those rules are in my last post but you wont be able to apply using these rules until you are 'event' free for a year. Since you have already been event free I would suggest that you call DVLA and find out what it is you can do to get your licence back. I never passed the field of vision test to get my licence back and probably never will; hence the need to jump through the exceptional case hoops! So long as things are done methodically I was always of the opinion that I would get my licence back. And I did! I wish you all the best with it. Always ask more questions if you need to. Keep us informed!
  7. Winb143

    RIORITA says oooops!

    Hi Rita, A trouble shared etc. Hope hubby is well xxxx and you keep strong xx
  8. Last week
  9. Tina

    Jase Webber. New member.

    Hi Jase a very warm welcome to BTG. Some great posts above from Clare, Daff, Win & Chris. At 18 months i felt very much like you do now. It does get better, just takes time to adjust to such a life changing event. There will still be good days and bad days along the way, but you survived and sounds like you are doing really well. Be kind to yourself and be proud of how far you have come and all you have achieved. Take care and let us know how you are doing. Tina xx
  10. Jan congratulations on your 3rd anni-versary I wish you all that you wish for and more lovely lady xx Love Tina xx
  11. Tina

    Ups And downs

    Hi JC I would definitely go and see your GP regarding your work situation , they should help and support you with your ongoing recovery in between your follow up scan with your Neuro. My GP has been very supportive and understanding. He had never come across a patient that had survived. Please let us know how you get on. Happy Birthday to you, hope you have a wonderful day celebrating xx Love Tina xx
  12. Missjc1986

    Ups And downs

    Thanks everyone - it's really reassuring to hear from people who have had experienced similar situations and realise that rest will be crucial to my recovery. I think I've been so focused and desperate to return to normal I probably haven't taken in the severity of what has happened to me and also portrayed to many around me that I am fine (coz I've wanted to be fine!). I guess I need to come to terms that I'm not 100% yet and probably won't be for a while... it's just so hard when you were a high-functioning busy person beforehand to be reduced to this. That is my biggest struggle. Clare - you noted that your emotional resilience has changed, this resinated with me. I was someone that NEVER cried previously and now I often find myself upset and feeling helpless in situations, when I'd normally just be mad or angry. Off the back of this forum, I had a chat to my work today about my regression in recovery and that I probably need to take a step back if I want to keep moving forward. Explaining that while I look well and at times can function well, I'm not there 100% yet and probably won't be for a while hopefully will help them understand what is going on (they were really good about it). Can I ask, do you think it's worth checking in with a GP on my situation? My nuero said I only need to go back in a years time for a follow up scan.
  13. carolann

    Thanks for being here

    Hi again, appreciate all of your encouraging words here. My second scan was clear all good! It’s a strange occurrence though huh? My doctor says your good to go! But I still am so tired all the time. It’s been almost three months. Although, I do see a lot of improvement. My all day head aches and the noise in my ear is gone. Now I’m having sharp pains running down the left side of my head and in the bone behind my ear. Any ideas on what this is? It happens when I lay down to sleep. I do have TMJ from clenching my teeth. .......But I do realize how lucky I am in the overall.
  14. Chris G

    Three Years!!! Still here!!

    Congrats Jan. I too hope things just continue to get brighter for you. Chris
  15. Chris G

    Jase Webber. New member.

    Another runner here, but not marathons. Hang in there! The new you is every bit as special as the old you. Chris
  16. You concerns will get better with time. Hang in there. Little things become big things, like blowing your nose. But with time, the anxiety should get better. Chris
  17. Chris G

    Struggling

    I send you best wishes for a continued recovery. It takes time and patience. Please hang in there. You are a survivor! Chris
  18. KarlM

    Medical Driving Assessment

    Hello again and sorry it has taken a while for me to respond to your kind wishes and useful information. Well, after waiting a year and a half I finally got to do my driving assessment. I had mixed emotions leading up to the day as driving is so important to me; I've realised just how important since my licence was revoked. I was both nervous and excited as I knew the assessment would ultimately determine whether or not I'd get my licence back. I arrived at the assessment centre around 20 minutes before my appointment. All of the staff were very friendly and the receptionist even made me a cup of coffee. I was eventually called in where I met an occupational health specialist and a specialist driving assessor. They explained the reason for the assessment and what I would be doing. They already had all my medical notes from my doctors so they had a good idea how I had gotten to this point. The assessment was split into two parts. The first part was a mental stress test. This is designed to determine how well you cope under pressure and how you process visual and audio information. It consisted of a set of small tasks which I had to completed as quickly and as accurately as possible. These included things such as reproducing a diagram of a cube, memorizing and recalling lists of words, marking all occurrences of a particular letter in a grid of letters, etc. The difficulty of this task ia determined by your age and level of education. It was actually quite tricky and I felt like I'd been tested after it, even though I felt I'd done well. Then it was onto the actual driving portion of the assessment. They offered me a choice of cars and in the end I went for a 1 litre manual ford fiesta. I started off in the little test track they had on site. I did a few laps and they asked me to do a hill start and an emergency stop to make sure I had full control of the car. Once they were happy we went onto the proper roads. They explained that it wasn't a driving test and they would not try to catch me out. I would be driving on a pre set route (about 12 miles in total) and they were not wanting me to drive like you would in a test (hands 10 and 2, not riding the clutch, etc). As long as I safely navigated the route within the speed limits they would be happy. I was guided along the route; told where to turn, which exit to take at roundabouts, etc. I made a point of over emphasising my looks in the mirrors and over my shoulders. I also said out loud when people pulled out in front of me so that the assessors knew that I'd seen everything going on. Half way through my drive they got me to pull over. They do this for everyone as a little break as they're aware you haven't driven for so long. At this point they give you some feedback. I was told I was driving very well by both of the assessors and to keep it it up for the second half. The second half of the drive included some independent driving where they ask you to follow the road signs to a certain location. This was absolutely fine and I made it there with no problems. I was then directed back to the test centre. After I pulled up I went and sat back in the room where I did the first test while they had a quick discussion between themselves. They were only gone 30 seconds and when they came in they said straight away "Congratulations! You've had an excellent drive and we're happy to advise the DVLA to reissue your licence." I was over the moon and I couldn't thank them enough. They reminded me that the decision is down to the DVLA, but they do tend to go with their recommendation 99.9% of the time. I'm convinced it's just a matter of waiting now - I've even been to look at cars! I'm going to ring the DVLA this Friday and then ring them every day after that until they've made a decision. As soon as I know I'll let you know on here.
  19. PJ-ND

    Struggling

    I had very poor treatment from a lot of specialists. I was basically dismissed from the neurosurgeon because there was nothing to surgically fix, and also from the neurologist because I didn’t have any identified deficits in the ICU, and a neuro-psychologist because he basically didn’t know what to do with me. I have found I receive better help from the lowly physician's assistants and family nurse practitioners for a general practice doctor I see than I did from the highly educated, specialized doctors. Don't be disappointed if you get little help from the neurologist. It has been very difficult to get any medical professional to believe I could have memory issues, the headaches, fatigue, low tolerance for chaos or stress, from my SAH or that the symptom are real, and that they actually might interfere with my ability to work full-time at a highly stressful job. I swear this group could quite possibly have saved my life. The depression and frustration I had in the early days when most doctors treated me like I was exaggerating the symptoms almost drove me over the edge. I stumbled on to this site, and although I don't post much, I read a lot. To know I am not alone, and that I am not experiencing anything different than most people with a similar medical conditions to what I had? It has helped me stand up for myself, not be ashamed of the ongoing issues I have, and I don't ever let anyone tell me that I am not having the problems I am having as a result of my SAH! I hope you get help from your visit to a neurologist, but if you don't, keep on trying to find a doctor that will listen. Don't give up advocating for yourself and your care! I live where few doctors have had the opportunity to take care of a SAH survivor. I believe many are just not all that educated about what the true outcomes are. I am almost a year and a half out from mine, and I finally do have good days. However, I have a lot of not as good days. When I push too hard or work is stressful, or I don't get enough sleep, I generally pay a big price by not feeling well for days on end. It has been very difficult for me to accept that I might not ever be the person I was before. To see that many people here go through the same things I am dealing with makes me feel like it is OK to say “I need to take care of myself, even if that doesn’t fit into your agenda for me”. The reminders from people on this site that I could be so much worse off, or that I could have died, well, they help me look to the positives in life. As much as I want to get hung up on all the things I can't do or that I can't just push through a day because I am(was) a strong person - people here help me remember that I have so many good things happening in my life too. I have a husband and my adult children that help me so much. When I get down on myself, they are quick to remind me how happy they are that I am still here with them. They remind me it is OK that I am not super woman anymore. In spite of how good they are to me, I still let my frustrations boil over and get short and cross with them at times. But they hang in there with me and cheer me on to embrace the new me and be OK with it. I don't know yet if this is all the better I get, or if my brain is possibly still healing some. But no matter what, I take a stand for myself, I speak out about my symptoms each and every time I see a doctor. Any kind of doctor - so they can learn about a survivor of a SAH like me. I may look perfectly normal, the same as before, but I have real, not imagined, brain issues and physical limitations that are not gone yet. Maybe the next survivor to walk into their offices will benefit because that doctor has heard from me that not all is well on the inside just because I look fine on the outside! It has been life changing to know that I am not alone. There are a lot of survivors here, and while everybody has a different course through the aftermath, many have the same issues I do. It does get better. Even though I might not ever get back to who I was before, I do see big improvement from those first difficult months after being discharged. Listen to them. Take all the time you can get to rest and heal. I wish I had been given the opportunity to do the same.
  20. Thanks for your advice Johnny- I must say that your story is absolutely inspirational and has given me a glimmer of hope in this seemingly never ending battle. Yes it was the Dvla who revoked my license at the end of May- a truly devastating day as I’m sure you understand only too well. Following my one off isolated ‘event’ with an Audi Q7 in May 2016 I suffered two brain injuries along with a number of other injuries which I felt overjoyed to have survived! In critical care I noticed that I had lost some peripheral vision in my right eye but in time this disappeared ( more likely my brain adapted to it as it healed) I felt lucky that I had not lost my sight but my reading was affected ( acquired dyslexia) - now much improved.! Anyway, after this head injury I had to surrender my license and was unable to drive for 9 months. It was an amazing day when I got my license back in March 2017. No mention of having to have a vision test from the DVLA because it wasn’t a symptom of the brain injury that I was aware of even though it must have been there all the time. In October 2016 , before I got my license back, I had to go to Specsavers to get new glasses so I had a sight test. It was at this point that they told me that there was right sided periferal loss but I wasn’t told to inform my Gp or the DVLA so I had no reason to worry about it. In February 2018 I had an appointment with a neurologist as part of my personal injury case and I mentioned that this vision loss had been found ( silly me!) - he referred me to an ophthalmologist who tested my eyes and promptly told me to stop driving and inform the Dvla! I did so and my license was revoked after taking the Specsavers esterman test in May. Devastating. Im slightly concerned that in my letter from the Dvla there is no mention of trying to get my license back via the exceptional rules route? I feel that I should have a good case - it’s just getting the evidence. Ive contacted my case manager who has been in touch with the neurologist to try and get back to see him hopefully to get some evidence from him? I’ve got to see the ophthalmologist again in August so I will present all the Specsavers field test printouts from the last 18 months that show no change in my vision and hope he agrees. What else can I do? I did have an occupational therapist who has discharged me - perhaps contact her? I also have a clinical neuropsychologist who has one last appointment with me next week- ask him too!! Amazing how many ‘ologists ‘ I have working on my case!!!! sorry that this is a long rambling reply- one last question- did you ever manage to pass the field test? I know I will never be able to pass it - my injury is permanent now. Thank you you for giving me and my family a bit of hope. D
  21. Chris G

    Ups And downs

    Certainly sounds like you are doing more than your body is ready for. I suggest rest. Please remember that this is not a steady recovery process. It ebbs and flows. Up and down. One of the concerns is when you feel better and let everyone know you are doing ok, they think you will just continue to improve. And they may not be patient when you hit a wall. Please rest as much as you can and listen to your body. It will tell you when it's too much, as it seems to be doing now. Best wishes, Chris
  22. Johnnie M

    infundibulum

    My wife has one. She is 54 and has known about it for over three decades. She has been told not to worry about it.
  23. Thank you for your kind words. Yes, Hopefully in time the fuzziness will go. Each day I wake up hoping that it's not there. One day I will and it'll be gone xx
  24. Had mine coiled so I am no help at all, sorry you had a rough time of it. My head played me up for a while, hope they can sort it out soon xx Good Luck and Hope you feel better soon xxxxxxx
  25. Welcome Finollie. It sounds like a right old muddle to me. You must be so frustrated, not surprisingly in the circumstances!! Specsavers are the people that DVLA revert to for the initial visual field test (called an Esterman test) after the loss of vision. If it were me I would be hanging my hat on that test and applying for a new licence using, as you mentioned, the exceptional case rules. I attach a part copy of the letter (inc the exceptional case rules) that were issued to me when my licence was revoked in November 2016 following a poor result with Specsavers. If you apply the DVLA to have your licence reinstated then the first thing they will do is to send you to Specsavers for a test. This may result in you getting your licence back without any further ado and the licence will come back to you within a couple of weeks. If the Specsavers test doesn't do the trick they may well put your through the 'exceptional case' criteria; at which point there are some hoops through which one must jump. See attached list of criteria, all of which must be passed. Item 1 you have already passed so this is merely a date which you'll have to inform them in the accompanying letter. Item 2. You will need a letter from your doctor/consultant confirming that the 'event' was an isolated incident and there are no other reasons why you should have a similar 'event' in the future. You may already have a letter that shows this. Items 3, 4, 5 and 6 can all be dealt with by way of an appointment with a neuro opthalmologist. The DVLA will send you a letter asking you to make an appointment with such a consultant (they will choose one in your area - it may take 2 - 3 months to get an appointment!) and they will cover these areas and report back direct to the DVLA (they will do another, perhaps more rigorous, Esterman, field of vision test). Item 7 requires a letter/report from your doctor and/or an occupational therapist that confirms that you are able to do everything in your everyday life without the loss of vision causing an issue (getting dressed, cooking, going shopping, crossing the road etc etc). Once you have passed all these above criteria the DVLA will ask you to attend a driving assessment. It sounds like you'll pass with flying colours. I am pretty sure that the DVLA will let you have your licence back but you need to apply for it back. Out of interest, who revoked the licence? Was it the DVLA? If so, have they not issued you with a letter revoking the licence? If not, I would call them directly and speak to someone about it. If you have a case number then have that to hand as you'll need to quote it. If not then just tell them what you've told us. It all seems a bit of a nonsense to me. The DVLA is the ONLY arbiter of whether you can drive or not. Call them on 0300 790 6806. Good luck and let us know how you get on!! JM scan.pdf
  26. Swishy

    Ups And downs

    Hi, Happy you found this site. There are so many helpful people here and we can all relate to what you are going through. Your friends are right you are a very strong person, you survived a brain bleed. Please don't be so hard on yourself. This is a big deal and as you have learned often what we struggle with is invisible to others. I found I had to go slow, much slower than i wanted to. I wanted to get over it like I had gotten over a bad flu, but, it is taking much more time. i am one year one month out and am beginning to really learn to pace myself. Be very kind to yourself, and learn to say no sometimes...It is hard when those around you don't understand how you feel, but not having experienced it makes it very difficult. Take care Jean
  27. CharlieD

    Ups And downs

    Hi I know how you feel as I am only 5 weeks post bleed and am already finding the ups and downs difficult. I have yet to return to work and 'normal life' but have had times of feeling well and positive only for it to be followed by feeling very low, ill and scared of the future. I have however read lots on this site from a range of people and there seems to be such a strong pattern of needing to slow things down in the first year and even then having a different approach to life. I am hoping that this might make me slow down and take in all the things that while I have always been grateful for but I was always so busy and planning the next thing. I always said yes to everything I think I have to change that now. Sounds like you are doing so much for 10 weeks, I hope I am capable of all that, you should see the positive even if you do need to rest more than you used to.
  28. ClareM

    Ups And downs

    Hi welcome to BTG, glad you have found us but sorry to hear of your troubles. Everything you report sounds very similar to my NASAH journey and I think you know the answer to your question. I think you have definitely overdone things. To be back at work full time after 6 weeks is amazing and very brave. But then to make that huge trip to Spain on top was possibly just a little too much. It takes time to get over this type of event injury and maybe you need to step back and take more time. I think your Neurologists prediction of 4 months to 100% recovery seems a little optimistic. I’m 3 years down the line and have accepted now that I will never be 100% as I was before. I don’t have the emotional resilience I had before and work less hours as stress affects my fatigue. It is a bit of an ‘invisible’ recovery that takes time. Other people don’t understand as you look so well but it’s there all the same. Listen to your body it’s telling you to slow down. I hope you manage to get some time to recover. Clare xx
  29. Hi all I’ve been reading for a while but only decided to join today. I’m a 31-year old female and before my NASAH, I had generally very good health, non-smoker, am not over-weight, eat well and was physically active. It’s been 10 weeks (2.4.2018) since my permesencephalic venous subarachnoid haemorrhage. It was a small amount of blood in the interpeduncular prepontine and right ambient cistern. During at heated phone call at work, the 'thunderclap' headache came over me and my neck instantly stiffened. I have suffered from migraines most of my life but knew straight away this was different - I was very distressed. I called my partner, and luckily, we were in a place that had paramedics onsite. They clearly were worried about a stroke or brain related issue after they quickly issued morphine and with no relief (the pain actually got worse) got me to the hospital ASAP. I spent 12 days in hospital - after the bleed diagnosis, I had a cerebral angiography which ruled out an aneurysm and other abnormalities. They said rest would be the key. I generally felt quiet well in the hospital beyond low-blood pressure and boredom (no screens) but then struggled with the flow on effects with my body as the blood dispersed into my spin and caused pain/spasms walking and moving. I spent another 2.5 weeks at home resting and getting moving again, then returned to work part time and graduated to full-time about 2 weeks after that due to work pressures. I still feel like I struggle at work with afternoon "brain fog" - normally something you'd get up from your desk, have a coffee and re-group but I often just can get past it now. At this point of returning to work almost full time (about 6 weeks out) I was feeling good, not taking pain killers and saw my neurologist where I received a positive outlook with the aim of approx. 4 months to be feeling 100% again. He even cleared me to travel to Spain (I’m from Australia so 30 hours of travel) for a friends wedding at the 8 week mark. I’ve just returned from the trip to Spain - the travel was very long and the week there (while lovely!) was very busy and I didn’t get much rest. I flew in a returned straight to work on the same day. Now, 5 days later (10 weeks post NASAH) I feel like I am struggling again both physically and emotionally. I haven’t gone to work today and spent the day on the couch - I’ve been exhausted, irritatable, emotional and generally just feel unwell. I didn’t sleep well last night (first night no sleeping tablets since I’ve been back) and woke at 3.00am adding to my tiredness. Do you think I have overdone it and gone backwards in my recovery? I was feeling good (well much better) but now am upset, frustrated and a little ashamed that I feel weak and emotional again, that I've regressed. It’s so hard to explain these feelings to the outside world, especially friends and colleagues who view me as a very strong person. I feel like I’m letting people down. So many of these symptoms are invisible and people have seen me to what looks like I've returned to normal. I also feel bad for my fiancé, who is riding the emotion of this all as well with my ups and downs. Has anyone had similar experiences?
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