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  1. Yesterday
  2. Colleen Lyons Colleen Lyons changed their profile photo
  3. Mandie Young Martz Mandie Young Martz changed their profile photo
  4. Gill Jenkins started following Did anyone else lose their appetite post SAH?
  5. Gill Jenkins
    Hi this all helps me I had a SH in September and my appetite is no existent
  6. Gill Jenkins Gill Jenkins joined the community
  7. Xmartz Xmartz changed their profile photo
  8. Last week
  9. Daffodil
    Roberta I self studied as an aromatherapist just out of personal ambition when I was in my twenties alongside a very different career and I used that from when I discharged after my SAH and Hydrocephalus. I had a grade 4 and also a Shunt placed. I have to be very careful with oils, i know the ones I can use and to avoid. if I have a massage even now after nearly 8 yrs I can’t have a full body without it effecting me greatly, but light touch and arms and feet are a great relaxation I found. I wasnt offered any alternative therapies, I used to use a lot prior but not all sit well with brain injury as over stimulate sometimes..now just meditation, occasional massage and regular use of oils and mindfulness. I think .you will be an insightful practioner I am sure due to your BI so go easy and be kind, it’s hard work studying for everyone. You’ll get there, no prize for rushing it,
  10. Roberta
    Thank you so much , I have only done 2 and 1/2 years to date , I have loved every minute of it even the times I spent in tears thinking I was incapable. having one of those moments now but I know it will pass. one day at a time is my moto right now. what did you study? if you don't mind me asking. well done on being a survivor and a fighter, and wish you well with your recovery, as it is an ongoing struggle for us all. Staying positive, meditation, massage and reiki have all help me a great deal though, I still struggle daily with my memory and cognitive problems. Be well, Roberta
  11. Louise
    Well done on your 2nd year anni-versary, yep being kind to yourself and onward and forward you go..
  12. Louise
    Hi there Warm welcome. I went to college after the SAH, was there for 7yrs but didn't work out for me so well done you on doing what your doing.. I was in rehab for I think 2 months but didn't have any of thetherapies you mention. Take care.
  13. Tina
    Hi Sarah Congratulations on your 2 year anniversary xx Wishing you well xx Take care Love Tina xx
  14. jess
    Congratulations on your anniversary xxx Hope you have many more xxx
  15. ClareM
    Congratulations on your anni-versary, glad to hear you are learning your limitations. I think that is one of the hardest things post bleed particularly with regard to work. As Michelle says be kind to yourself, it’s a long road but hopefully not as lonely knowing you have people here on BTG who understand. take care xx
  16. Chelle C
    Hi Sarah, Congratulations on you 2 year Anni- versary, After all the stress of last year it is good to know that you have made some progress, it's not always easy to learn what your limitations are, it's good to know that you are finding it easier now, the headaches and fatigue do get better as with everything else to do with recovery from SAH it takes time. It's lovely that you have found BTG such a great support, I think we are all so grateful to have a place to come and to know that each and every one of us can support each other through this journey. Keep on being kind to yourself as you continue along the recovery road. Sending love and hugs to you Love Michelle. Xx
  17. subzero
    Sarah ... well done two years post SAH. Great to hear that you are positive about your progress. With such a traumatic time back then it is good that you have felt BTG and it`s members have been such a support in your recovery journey. It is also encouraging when you realise that recovery is gradual as the brain continues to heal and adapt. Best wishes as you go forward into another year. Subs
  18. SarahLS
    Two years ago today I had a dental injection which caused the first of four thunderclap headaches. I didn't discover for another month that I'd actually had a SAH. It has felt an odd day, last year at this time I'd just been threatened with redundancy and so the anniversary passed me by in a haze of stress and fear about my job, this year I've felt just how lucky I am despite everything. I'm definitely learning my limits, and learning to say no more (especially to work) but I am fed up with having a two year headache and also with the fatigue. Knowing there are people here who "get it" completely is wonderful, especially as I have learned exactly who my real life friends are. Thank you all for listening, and supporting during my journey & here's hoping that things do improve some more, however slowly.
  19. Bri
    Hi Daffodil. Thanks for your response. Sounds like you were put through the mill. I will chase up my specialist for a copy of the report, just to see if there are any other possible issues that might arrive from the DVLA. Unless she has suggested there is a problem with my field if vision(which she checked in her office to her satisfaction) I don't understand why they are insisting on this extra test. It does seem that there is little actual, careful consideration made to an individuals situation. More of a general tendency to err on the side if caution. I will sit and wait for the DVLA to move at their glacial pace to the next chapter of this saga. Bri.
  20. Daffodil
    Hi Bri, Try and get hold of your neurosurgeons PA and ask if she / he can email a copy of report to you to then send to DVLA. Tbh if they have cleared you neurologically that’s all they are looking for. I had an EVD and then later a Shunt...15 months no drivingafter being revoked !! Some of that down to DVLA and consultant delays but it took a letter from consultants finally get the yes from DVLA. I never had to take an eye test. but more recently had an over eager locum decide that a short bout of blurring which was full investigated by emergency ophthalmic consultant m full eye and vision test and no issues but he decided in his wisdom ( or lack of it) that it meant I couldn’t drive ( basically he was annoyed because I didn't agree with his assessment that I should have an LP, i pointed out Had he ever had one and that I’d had at least 10 so I would have to decline as hospital was happy ) but he informed DVLA anyway! I was floored and very distressed, I actually paid to see a neurologist privately,cost me £100 , he tested me, reviewed my latest notes and sent report to DVLA confirming my fitness to drive and I was immediately told I could continue without it being revoked and they would confirm in writing. Good luck. But yes patience is key, that And dogged pursuit of anyone who can influence !
  21. Bri
    Thanks again Johnnie. It is frustrating to have to wait for a pointless test, and no doubt at some cost to the DVLA. My Neurosurgeon did a quick test in her office at my final check up. All fine, thankfully. I have asked for a copy of her report, to confirm that this test is needed based on its contents. I know we have no choice but to let the wheels of bureaucracy turn. But I feel that the system at DVLA is prehistoric, no emails or website access to update documents. I was told by a rather unhelpful chap there, when I asked for a likely time scale, that there are 3million medical licenses and I can't expect there to be 3million doctors to review each one. Rather daft and unhelpful answer. I will sit and wait, hopefully as you say, Specsavers will get onto it fairly quickly. It is the snail pace, and unhelpful attitude of the DVLA that causes me heartburn. Thanks again for your straightforward, and no doubt, useful comments. Regards Bri.
  22. Tim 60 Tim 60 joined the community
  23. Johnnie M
    The field of vision test (esterman test) at Specsavers seems, in this case, to be a formality Bri, unless you have experienced a loss of vision since your 'event'? It's quite a simple test and involves pressing a button when you see a light come up. You focus on the centre of the screen and it checks your periphery vision to see if there are any missing sections. I had loss of vision after my stroke and it shows up on the test. If you have been shown to have 20 20 vision then it sounds like you'll be fine but please be aware that being able to see letters on a board does not mean you don't have loss of periphery vision. Having said that, I suspect you would know about such a loss already, if it had occurred. This is what makes me think they are jut trying to cover all bases. Specsavers will get the results to the DVLA within a couple of days and if it is all clear then, hopefully, the DVLA should decide quickly. It is unlikely that Specsavers will give you the test results or even discuss them with you. I am sure it will be fine. Good luck.
  24. Bri
    Hi, The saga continues. Having just spoken to the DVLA medical department, hoping to be given some good news, as my application has been with the doctors panel, 3 weeks tomorrow. I have been told that a letter has been sent to Specsavers, asking them to arrange a field of vision test. The results of which will be sent back to the panel. I assume this will now add a number of weeks to the process. I had an eye test a few weeks ago, to confirm that my sight is still 20/20. I did explain to the lady I spoke to that my sight is good and that as per my legal duty I would inform them if I was aware of any issues that would make me unfit to drive. ( I am getting desperate to have ny license back). I even offered to go straight to specsavers to get a field of vision check done asap at my own expense, then fax the result to them. All to no avail. I appear to be getting drip fed info from them and would love to know if there are any likely "hiccups" on the way. I would love to hear the experiences of anyone else who has had a 6 month medical ban after having an EVD or shunt fitted. Regards Bri.
  25. Bri
    Thanks Johnnie. I will try to be patient, as you suggest. It's coming up to three weeks since my application went to the medical panel for assessment. Fingers crossed that it re-appears soon. Regards Bri.
  26. Johnnie M
    Hey Bri. Sorry to hear of your DVLA traumas. It is not entirely surprising though! It took three weeks-ish for me to get my licence back after the information had been passed to the doctors. So long as they have the information they will eventually get to making a decision. They are not picking on you; it's just that they have to do this for many people and their workload is considerable. Also, it is a very serious decision to make to allow someone their licence back. I'm afraid, in this, and all cases with the DVLA, patience really is a virtue. Keep phoning them fella. They are always happy to let you know what progress there is, if any but the people answering the phone don't necessarily have the ability to call the doctors to ask how they are getting on with a particular case. Chin up. Hopefully you'll be fully mobile again before Christmas and you can give the Evo triangle a bit of a go! 😉
  27. Karen
    Admin note only: Content Approved/reinstated - 3/12/19
  28. Bri
    Hi, Having recently gone through my 6 month post bleed "red letter day" in the calendar, I was hoping to celebrate by driving my wife to a planned celebration with friends. Unfortunately, although I sent of the appropriate forms and application, 8 weeks before the date my ban finished (24 Nov) There is still no sign of my license. I have been ringing every few days for an update. but it is rather pointless as the medical application help centre, will not give me a timescale, even a ball park estimate. Apparently the application has been "with the doctors" since 14th Nov. Having had the all clear from my Neurologist in September, with no outstanding medical issues, I naively assumed my six month ban would be simply and speedily honoured. (My licence was taken away speedily and efficiently) Can anyone who has been through the DVLA system give me an idea of what to expect from them? I am sure that there are other posts covering this topic, but I can't find them. I feel lucky to be as well as I am, but for mild headaches and occasional bouts of tiredness, I am almost back to my old self. Living in Rural Mid Wales, without being able to drive is becoming a real limiting factor in my return to normal life. Sorry for the whinge. Bri.
  29. Catwoman23
    You know I can’t give you med advice😿 but everyones different and I have seen many react differently to same meds. I have taken them long ago for my back. Sometimes it makes me feel dizzy and sleepy. And it can be due to interaction with other meds. Goodluck. You can talk to the doc.
  30. ClareM
    Casey I suspect it was a side effect of the medication. Anything in that line of drugs always leaves me with a massive ‘hangover’ effect the following day. As Macca says read the patient info leaflet and speak to the prescriber. It may be that if you took in earlier in the evening that the effects the following day would not be so noticeable. Good luck clare xx
  31. Earlier
  32. Daffodil
    Hi Jenni Please believe me when I say that your daughter will not care about missing outings to shops and for now you need to give yourself permission to heal, slow everything down and just be here enjoying the now as best you can and to take each day as you can. Explore different ways to share Christmas with your daughter,go on short frosty walks to get the fresh air and winter sunshine when it fleetingly appears, make mince pies together, make old fashioned paper chains, get partner to drive around looking at xmas decorations and counting trees... these are all things that will still take you effort, still use your energy but won’t have the same cognitive overload that Christmas shopping will take from you early in recovery. If you do venture to shops avoid weekends, wear sunglasses and ear plugs and limit your time there and rest after. Everywhere will Be busy and noisy an each is an assault to the brain whilst it heals. Do your shopping online!! Better yet give someone else the list this year! i understand entirely, you feel you should be able to do this after all it’s so easy right? but try please to see that right now everything that used to happen previously without much thought and effort has changed as the brain ability to proceed and filter stimulation is a bit bruised and altered from blood going where it should not have been. Invest your time and energy wisely now and it will pay healing dividends. Post mine, I had to contend with further surgery , couldn’t drive for 16 months,there was no way I could shop unaided for even longer, absent from work for longer still and That was with me Being rushed into hospital within one hour of mine...and surgery within 3 , that said I was working on what was usually a day off. For sure Had I not worked that day I would not be here. Look for the positive if you can, yes you were seen, you were helped and thankfully you are here and home. 2 out of 3 sadly do not make it home. Of the 1in 3 of us that survive a SAH 1/3 of us live with lasting deficits or disability from the bleed and that is going to take adjustment and it won’t happen fast . You can’t change the past, you can only count from now, onwards with curiosity about the possibility of a slightly altered course. Go steady , we are with you.
  33. Errol Errol joined the community
  34. Macca
    Hi Casey, As you know we can't give medical advice. However, I would say to you first - read the literature that comes with your medicines and look for the side effects listed. Then go to your doctors and ask their advice. That's the reliable and best way to deal with the condition you mention. Good luck my friend. Macca
  35. CaseyR
    I have a question. My nasah occurred in 2012 and I have not had any alcohol since. Recently I was prescribed muscle relaxers for my cranky old neck. I took one before bed and woke up during the night drunk as a skunk. I was out of sorts all the next day. I’m in no hurry to take another one. Has anyone had similar experience? I understand alcohol seems to have an increased effect on us with scars on our brains. I’m thinking maybe this muscle relaxer does too?
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