Jimble Posted November 23, 2018 Share Posted November 23, 2018 I'm 6 years after my first bleed - 2 years after my 2nd. But 2 weeks before my 2nd bleed i had a strange attack a rushing sensation. Just being diagnosed (2 years on!!) that these attacks are more than likely a form of seizures. Just wondered if anyone else had any side effects like this after a bleed and how they coped. thanks Link to comment Share on other sites More sharing options...
CharlieD Posted November 23, 2018 Share Posted November 23, 2018 Hi Jimble, I have had a number of strange sensations but one that does feel like a rushing or wave from my head to the bottom of my spine. I have been to the doctor about them but don't see my neurologist until Jan and GP just say see him. I thought they were a form of seizure but everything I read said not and will not know until Jan. I am on Gabapentin for the head pain and strange stuff so wonder if that's suppressing things somewhat. What do yours feel like? I read previously that you have had two. I don't know how you stay sane. Sorry to hear you are now dealing with this hopefully diagnosis will make life easier. Link to comment Share on other sites More sharing options...
Winb143 Posted November 23, 2018 Share Posted November 23, 2018 Hi Jimble, My epilepsy started at 14 puberty years I hoped against hope that they'd one day slow down. Just got my AED drugs to slow epilepsy down at the age of mid 55's and 9 years approx later I had a SAH and back they came with a vengeance !! I had another seizure, so told my Epilepsy Specialist about it and told him "It was like one I have never had before" He decided to put me on more Keppra which I couldn't take, so he tried me on another AED and been on it since Feb 2018 and not had a seizure since then and not even had the shakes ..Touch wood". Had another small bleed that caused the bad seizure. Good luck on getting drugs sorted out, Wishing you all the best with getting them sorted Regards WinB143 alas Win Remember I had them from 14 not when I had SAH, hopefully yours will go who can say xxxx Link to comment Share on other sites More sharing options...
Jimble Posted February 22, 2019 Author Share Posted February 22, 2019 @CharlieD as both bleeds have been minor I’ve returned to a pretty normal life - the doctors are diagnosing seizures - I have started on kepra - must admit after 2nd bleed it’s bin hard to feel totally comfortable even as I write this has a bad week of mild headaches and stiff necks ( and I’m 2 years on ) which have been unusual - the rush sensation usually stems from my stomach but they do sound similar. Look up focal aware seizures on the net that’s what mine are identified as fingers crossed kepra sorts it - all mri scans and eeg scan were normal - neuro surgeon wants to do an in-depth mri scan now to see if I’m having micro bleeds - as would like an answer to why I’ve had 2 bleeds hope all goes well with you Link to comment Share on other sites More sharing options...
CharlieD Posted February 23, 2019 Share Posted February 23, 2019 Hi Jimble. I have had an eeg, not had results yet but nothing happened during test so am sure was all fine. It sounds very similar to what you have. I was told to keep a diary of when they happen. I am not surprised you worry after your second. I really hope the MRI is clear and you can get on with your life. I have had a few occasions where I have wondered if I have had tiny bleed but decide to wait and see. Did you know when you had the second? Link to comment Share on other sites More sharing options...
Tshiffy Posted March 1, 2019 Share Posted March 1, 2019 Hi, Jimble, Four years ago I suffered a SAH. About six months before it occurred, I would have "chills".and my entire body would tremble and I was very cold. I'd just go to bed with several blankets. Then on my way to the airport for a 4 hour flight I suffered a SAH. I don't remember a lot about the 10 days in Neuro ICU, but i do remember I started "shivering" just as I had in the past. The nurse said I was having seizures. After my release from the hospital I remained on Keppra for six months and I have not had a reoccurrence of the seizures. I hope you are are feeling better. Link to comment Share on other sites More sharing options...
Jimble Posted April 8, 2019 Author Share Posted April 8, 2019 Thank you everyone. @CharlieD yes I was loading a large object into my car it felt as though somebody tapped on my forehead - then a great fizzing sensation in my neck. Although I didn’t expect it to be another bleed - but I new something wasn’t right so I went to the hospital. Since I last posted I’ve had some results back from cognitive testing although my intelligence remains in tact - all problem solving is very slow - if there are any distractions my ability to function goes way way down - and recollection of anything past 3 items is hard - mri done for micro bleeds but awaiting results Link to comment Share on other sites More sharing options...
Mike157 Posted April 12, 2019 Share Posted April 12, 2019 These results are normal for us, I have cognitive, functional and executive function disabilities. We adapt to each disability as we come across it. Practice makes perfect. We adapt in ways that seem strange to others but to us it's another step forward. Lists, reminders a great circle of friends are really good too. As is keeping a diary for yourself. I carry a pocket book to jot notes down as I need to. I also have made friends with various shops, why, they are places of safety for should I have the need for them. I've used them in the past when I mess up. Learning is going to be hard at times, hence note taking and asking for information in smaller easy to handle slots. Weakness in things we used to do but not at the moment are actually strengths, why because you already know it's a weakness and already starting to adapt and to make it a strength. Playing games is good too, as is the Nursery rhyme 'old McDonald had a farm'. Please don't laugh at me for this comment, but given you have to remember animals in an order, it becomes fun learn this new technique. Mike Link to comment Share on other sites More sharing options...
Macca Posted April 12, 2019 Share Posted April 12, 2019 Hi Mike, I'm not laughing - your advice is inspirational to others - we all have to adapt in our own ways, dependent upon how SAH affects us and to what degree. Brilliant advice, and put across in such a positive way. Thank you. Change happens - it's how one deals with it that counts. Well done indeed! I do similar things to help my short term memory. I also find repeated repetition helpful. Best wishes, Macca Link to comment Share on other sites More sharing options...
Mike157 Posted April 13, 2019 Share Posted April 13, 2019 With my epilepsy I'd not had a really bad one for nearly 18 months, as some know I had a really bad one very recently. My warning signs are confusion, dizziness and unsteadiness, it takes a few seconds for it to take effect. I head for the nearest wall, in case I fall over and hit my head. Why a wall? You put your back against it and slide down being supported by the wall, so no falls to the ground. By the time it's over, I'm really tired and very confused. This is why I have my routes around town. I speak to shop keepers and let them know I'm ill. Then if I need help they know what to do. Only a few times have I been caught with an episode out of the blue, then it really hurts. I've now got the Headway brain injury card, it's advertised on this site somewhere. I got mine quickly. It's a nightmare when you're on public transport to have a fit, so notifying the driver is a good idea, as is telling them your stop. It's happened twice on a bus for me, the driver looked after me, kept me on the bus, then dropped me of on the return journey at my stop. Pointed out where I needed to go. Jimble, little and often, slow and safe, repeat steps 1 and 2 very often. Use visual reminders, eventually your mind will adapt to input in a different way, this is cognitive retraining. More later. Mike Link to comment Share on other sites More sharing options...
Jimble Posted July 25, 2020 Author Share Posted July 25, 2020 Just thought I’d post an update - was looking on hear again to see if anybody had commented on pillows to help with sleep and saw my thread. I still get the odd strange sensation nothing anywhere as severe - I stopped taking my medication as it was causing me angst - am I feeling funny because of the meds or am I having issues in my head - questions we all ask ourselves I’m sure - anyways the last time I spoke to neurologist she was happy to discharge me - she never ruled out seizures but agreed could be anxiety . A good pillow helped with my stiff neck ! For 12 months anyway - struggling a little again with stiff neck so on the look out ! Hope everyone is as well as they can be. Link to comment Share on other sites More sharing options...
Xmartz Posted September 21, 2020 Share Posted September 21, 2020 I have had seizures, mostly small, but had a BIG one while home alone and ended up on a ventilator! Make sure you take the meds every day! I've found that a certain drug, investigate all options, helps me a lot with seizures Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.