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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

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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? 

 

 

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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

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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

 

 

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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...

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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👍

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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!

 

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