Patc Posted October 5, 2019 Share Posted October 5, 2019 Hello everyone! I’m coming up 3 years post bleed at the end of the month. Other than the usual fatigue, forgetfulness and anxiety - I’m doing pretty good. i’ve made necessary changes in my work life to accommodate my new reality, and I’m good with that! I know we all have different experiences post bleed, but I’m curious if anybody else has had this particular one. Every once in a while, I get this feeling in my head, like there is water pouring over it. There is no pain, just a weird sensation, and it has always happened in the middle of the night. If you are a woman, it almost feels like a hot flush. It only last a few minutes, but then I get the “butterflies” in the tummy and I usually get up for a bit as I’m too anxious to get back to sleep. This isn’t a regular occurrence, in the last 6 mos, it’s happened maybe 3-4 times. My doctor doesn’t seem too concerned about it and I was just wondering if anybody else has had this “feeling”. I decided to keep track of it, just to see how often it happens. Once again, this web site has been a life saver. Happy weekend everyone! Hugs, Pat Link to comment Share on other sites More sharing options...
subzero Posted October 5, 2019 Share Posted October 5, 2019 Hi Patc, you may get some help from this link. https://web.behindthegray.net/search/?&q=tickly sensation&page=1&search_and_or=or&sortby=relevancy Subs Link to comment Share on other sites More sharing options...
Daffodil Posted October 5, 2019 Share Posted October 5, 2019 Yes I have done and still do get it. Makes you feel really out of yourself whilst it is happening and literally feels like trickling sensations. I then get what i call ‘ hot head’ straight after and like you have to get up and just drink cold water and sit upright for a bit. i have annual scans so know nothing is changing which helped me not worry so much but when it first did yes it was a concern now I actually think when I have a significant feeling like that it seems actually a shift in healing. I often notice after I have it, and it’s rare occurrence now, that in the weeks after maybe my cognitive stamina would improve or I would get something back. maybe see if you notice any improvement afterwards? Link to comment Share on other sites More sharing options...
Patc Posted October 6, 2019 Author Share Posted October 6, 2019 Hi i knew I would get some answers here. Daffodil you are lucky you get annual scans. I live in Canada, and even though my hospital care was superb, the after care was non existent. I saw my neurologist 2 weeks after discharge, again after 6 mos. and had a CTScan. That was the last of it. I will check to see if, like you I see some improvement after these weird episodes. I do look at the bright side though, I’m here to complain about it😉😂😂. thank you Subzero, for the references, that did help. Hugs everyone Pat Link to comment Share on other sites More sharing options...
Winb143 Posted October 6, 2019 Share Posted October 6, 2019 I had that after my SAH and a shunt that helped me wake up from cuckooland put in. I still felt a few funny days and was worried. I had an itchy scalp and creepy crawly head felt. When my Mum was alive she always used salt water so I asked my daughter if she would rinse my hair in salt water as good for me. I tried it and was okay for me!! But if you are worried nothing like getting up your Docs and asking him. Hope it goes xxx Feel better soon Win xxxx Link to comment Share on other sites More sharing options...
Daffodil Posted October 6, 2019 Share Posted October 6, 2019 18 hours ago, Patc said: Daffodil you are lucky you get annual scans. I Well yes and no. Mainly it’s cos I have a neck on my aneurism and another small one . Oh and then my Shunt has required the occasional check too....I do think this will Be my last year of scheduled scans, 7 yrs on and it’ll be good not to go in the donut machine each year but they definitely helped reassure in early days after care is so hit and miss. For me I had angiogram 6 months post SAH then annual MRI’s and I will go to Shunt clinic for rest of life I think but know each has a very different experience... Link to comment Share on other sites More sharing options...
CharlieD Posted October 8, 2019 Share Posted October 8, 2019 Hi @Patc I had my bleed May 18 and have been left with much the same as you but headaches are also a real problem for me. I do have the strange sensation at night. I described it as like a wave going over my head and down and usually ends in that feeling in your stomach though sometimes it has ended with burning sensation everywhere. I see a neurologist and I told him it feels almost like a seizure, I feel wiped out after it. He gave me an eeg but said as it only happens at night it is unlikely to show. (The eeg showed slowing of brain intermittently, he said he would expect some damage like this after an SAH) He said sometimes there are different forms of seizure activity and its v hard to know for sure if this is one. He increased my gabapentin at night and it has reduced it massively. I am sooo glad about this as I hated them all the time! Not sure if that's the same as what you have but it sounds like something similar. Good to hear others experiences of these things👍 Link to comment Share on other sites More sharing options...
Patc Posted October 31, 2019 Author Share Posted October 31, 2019 Hi Charlie Our brains are so interesting, and so weird. It fascinates me that we pretty much all had the same medical emergency, yet we’re all left with different after effects. Your sensation sounds a lot like mine, except I don’t get a burning sensation. I do however get that feeling in my tummy. I’m not wiped out afterwards, and end up getting out of bed because I feel anxious. A couple Gravol settle the tummy and have bonus effect of making me drowsy. You are right, it is good to know that other people experience the same things we do. Sometimes I wonder if I’m going nuts🤪I just had My 3 year anniversary since my bleed happened and I am so thankful to be able to say that! Good luck in your recovery, you’re still pretty early in your recovery....get the rest you need and take care of yourself! Link to comment Share on other sites More sharing options...
Todd L. Posted December 27, 2019 Share Posted December 27, 2019 I've had so many weird feelings in my head over the past year and a half, it's comical, but it's not. Of course the anxiety level goes up every time but the feelings eventually subside... Until the next time. I guess that is reality for almost all of us now. Link to comment Share on other sites More sharing options...
Gillian99 Posted January 19, 2020 Share Posted January 19, 2020 Really interesting and reassuring to read these posts! I'm over 5 years post NASAH and 2019 had been my best year by far. However, the last 4 weeks haven't been good, think my head has been irritated by a virus of some kind and I'm back to these weird sensations at night. For me I feel as though I'm pulled out of my sleep and my head does the weird wave washing through it sensation, which is very unnerving. I had such a good spell of feeling like my old self and feeling fairly devastated that I'm back to having an irritated brain again! 😳 Link to comment Share on other sites More sharing options...
Patc Posted January 27, 2020 Author Share Posted January 27, 2020 Hey Gillian, Hope you are feeling better, and isn’t it peculiar that we only seem to feel these weird head sensations at night. I wonder if it has to do with being horizontal !???! Link to comment Share on other sites More sharing options...
Gillian99 Posted January 27, 2020 Share Posted January 27, 2020 Hi Patc, yes I did wonder that too, so have been sleeping with an extra pillow, which seems to have helped a bit. I've been given a neurology appointment for next week, which will give me a chance to chat things over. Seems really strange to have such a rubbish head again, when I had been so good last year! 🤔 I guess our brains are just a bit sensitive and are more easily irritated. Dr has signed me off for 2 weeks, so hopefully things will settle down soon. Link to comment Share on other sites More sharing options...
Skippy Posted January 28, 2020 Share Posted January 28, 2020 Hey there - have you tried a V pillow?? I've had several since my SAH and they certainly help with the head at night - I take mine everywhere when I'm staying somewhere overnight. Link to comment Share on other sites More sharing options...
Patc Posted February 28, 2020 Author Share Posted February 28, 2020 Hi Skippy What is a V pillow? 🥴Pat Link to comment Share on other sites More sharing options...
Super Mario Posted February 28, 2020 Share Posted February 28, 2020 These are examples of v pillows on a UK site. https://www.dunelm.com/search?q=v+shaped+pillow&&msclkid=74751da8fa881d6fed6343f03244a502&gclid=CPC0g_Tj8-cCFdOFhQod61EKnQ&gclsrc=ds Link to comment Share on other sites More sharing options...
Skippy Posted February 28, 2020 Share Posted February 28, 2020 If you use ebay type in V Shaped pillow and cover - not sure how much they'll be where you are but in England they're about £6 x Link to comment Share on other sites More sharing options...
Xamder mom Posted March 3, 2020 Share Posted March 3, 2020 I'm coming up to three years this month as well !! I can say for certain that my brain is always reminding me that it's there. People who have never experienced this do not understand. It seems that many of us do our best to describe what we are feeling and although my buzzing, painful sensations sound a bit different from yours they are very real and annoying nonetheless! I hope you have a good week and get the rest and refreshment you need. Link to comment Share on other sites More sharing options...
Alison2015 Posted April 8, 2020 Share Posted April 8, 2020 Hi Patc I'm in Canada as well. Sounds like you and I both had the same post-care. I saw my neurologist once post-bleed with the MRI results. All was good and he said this will most likely never happen to you again. I just had my 5 year anniversary on March 28, 2020 and all is good I too get the feeling in my head. It feels like water is pouring slowly over the top of my head. It doesn't hurt, doesn't cause me any concern but it is a weird feeling that never happened prior to my brain hemorrhage. Alison Link to comment Share on other sites More sharing options...
Skippy Posted April 8, 2020 Share Posted April 8, 2020 Hi Alison I had this, as have many others. Its apparently the blood dissipating back to where it should be. It is a very strange feeling - almost like a gentle internal massage. Link to comment Share on other sites More sharing options...
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