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Hi guys... Did any of you suffer being sick in the early days. Feel rotten, so dizzy, headache and the nausea is terrible, had to run to the bathroom earlier and was retching but was only sick a little. It eased and now its back again really bad and I feel like I'm going to be sick. Of course its making me worry because I feel so awful. Had flu jab yesterday and was wondering if that could have contributed. Thanks as always for any replies x

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Hi lisa I defs did have bad sickness I took andrews into work and drank that all day I as you know also had dizzyness and still suffer from both not the sickness as bad. I often wonder if again anxiety is making these symptoms too. I started cbt theorpy again yesterday and the woman is amazing I have faith that I will get sorted. From what I explained to her she said a lot of my symptoms could be anxiety and ptsd but because I dont know for sure whats caused the bleed then it could be my brain too but in jan I am having another angigram (off for pre assessment next wed) so if they dont find anything I am hoping to come to terms with it and move on with the help of cbt,and she says that if I have only been left with spaced out dizzy off balanced feelings after something that could have either killed me or paralyzed me then she will help me to live with these issues. I was yesterday feeling more positive about things but this dreamy feeling keeps rearing its ugly head. Do you see flashing lights cos I do also and how is your eye sight? I have a lot of floaters and fuzzy eyesight! Its never ending lisa I also think the flu jab will have set you back especially if you feel ill to start with x x

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Hi Bev, so glad to hear that cbt is working for you this time. Really hope she can make you feel better. My gp also increased my anti d dosage yesterday so it could be the jab which is making me sick and feel so rotten today. Wish I could get over this fear that everything is going to lead to something serious. I get fuzzy eyesight but no lights etc xx

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Do you think thats the anxiety from the whole experience? I am hyper alert so anything big or small leads me to think its all to do with my head or something serious and something bad will happen! Anything like if I have a cold I think I have something bad starting! I do not trust dr after I saw 6 over three week who all fobbed me off and I knew something was not right for gods sake and no it wasnt my brain had bled and I had a sizeable blood clot so how do I ever ever believe what one is saying again. I totally understand how you feel its awful and never ending x x

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I get anxious when my symptoms get bad which probably makes my symptoms worse so its a viscious cycle isn't it. I too have little faith in my local a&e and Dr as I went the week before with a severe thunderclap headache and they sent me home saying it was migraine never had migraine in my life), then saw gp few days later as it was still there and he sent me to eye hospital to check eye pressure as he thought it was my eyes, then a few days later I got the most terrible pain collapsed, unconscious and when I came round the pain and vomiting were horrendous and paramedic said it was migraine, told me to stop panicking and made me walk to the ambulance. It was all a blood y nightmare xx

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Its terrible lisa its like my story so many dr until one decided to look in my eyes then optition then a and e then ct scan and rushed to lgi after 3 loog weeks of knowing something was not right all clasic symptoms but I would have never thought I had a bleed! your not in yorkshire r you. I feel totally let down so how the hell can I believe what any ever say again,thats why I question everything all the time and its not helping not knowing why my brain has bled. They could still find something no angigram in jan at least I will know once and for all!i dont think I will ever get over it anxiety does make symptoms worse but I dont know how I can stop worrying. Like you going through hell x x

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Just got a fright, got really bad stabbing pains in the side of my head I had the Sah, they were really bad and have really scared me. I'm so fed up of all this. I really hope your angiogram goes well in January. The fact they missed your bleed for so long is disgusting. It seems to be so common when reading people's stories that they were sent home. I'm from Manchester xx

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Hi guys I was reading your post, I do not get nausea or dizzy but am off balanced just now at 14 months out and I have always had floaters in my right eye for many years. About 6 months or more prior to SAH I had what felt like a sparkler light up in my right eye and it was the freakest thing ever. I have some vision lost that was minor in both eyes. Have you had your eyes checked my a Neuro eye Dr? My regular eye dr never sees anything but you need a Neuro Eye person to do some special test. My vision loss is at 10:00 and 2:00 so I often feel like I am going to run into something.

My bleed was missed as well, they saw my stroke but missed the bleed ( unknown cause- NASAH). They also found a little brian tumor next to my brain stem ~ that was a bonus gift I think!! LOL Anyway I use to and still do off and on get those awful stabbing eye and head pains on the right side of my head. It is when I over did it, sunlight or LIGHTS got in my eyes or I read, computer work etc... It comes and goes.

I started being wobblely (SP) a few months back and I wonder if my balance was off b4 and I just was not moving as fast as I am now but I cannot walk and NOT look down at where I am going. If I think I shold look at that cute little bird in the grass it will make me dizzy. If I don;t STOP to look and keep walking same as driving. I keep my eyes on the road.

My neurologist told me a few weeks back that I was having an anixety attack and I politely told him "NO", I have more of a Where am I? & What am I doing here attacks at Malls, markets etc.. I do think I may have a little PTSD at times, not with it happening again. But with seeing head injuries or people playing sports and banging their heads. Thank GOD my kids are out of school and done with sports I would be freaking out.

My neurologist just added a second anti depressant to my Cymbalta for my Fibro. I sleep great and I think it has taken some anxiety away that made me anrgy with co workers etc... . I feel like I am totally on uppers and downers. I take ritalin so I can stay awake past noon everyday and NOT sleep until dinner time. Which does make my quality of life much better, plus it woke up the part of my brain that could not process just getting up and making soup or something I did for a million years.

Early days to me are the first year. My how one changes so much. I do not think I had any one huge issue but a bunch of smaller or medium ones that ended up making me crazy. I was much to brain drained the first 4 months to really care about anything. It took me close to 9-10 months to really begin to wrap my head around all that happened. I say rest rest and rest some more. Drink as much water as you can and do not worry about the small stuff. I kept thinking this is never going to end - it does not at 14 months but it changes. Or at least that is where I am at now.

PS. I was complaining I was ill for 6-12 months or more about being completely exhausted and not feeling "right". I just think Dr know less than we think they should. I knew something was wrong but I was not having headaches yets or anything but exhaustion and not feeling well.

Edited by MaryB
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Oh, gosh....how I babble on and on. I was wondering you eye pain gals if your head ever just feels so tender you cannot find anything soft enough to lay it down on? I cannot even stand to wear my glasses and last week had ot have them adjusted as they felt too tight.

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Hi mary you dont babble on at all. I never have eye pain at touch wood I dont have headache just a few twinges now and again my biggest issue is this spaced out dazed feeling and unbalanced! I just feel like nothing is real 24/7! I wooed if its something to do with damage to temprol lobe and the way a peceive things like the way my brain works stuff out only badly. Its awful but seems to have got worse since sceizure??dont get it. Off on my works do tonight dont drink anymore so bit worried how that will go am shattered too. Oh to be normal again xx

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My eyes felt dry and itchy and when I went to Docs I told her it was like they drilled my head (which they did) and dropped bits of scull

in my eyes lol .(which they never)

She sent me to Optician who gave me drops for dry eyes,

I felt a fraud but at least I know what to do when eyes hurt.

Be Well

WinB143 xx

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Bev, I think I am on the same lines as Mary here.

The spaced out, off balance, dizzy feeling has been a regular feature for me since SAH. I was prescribed anti epilepsy medication after a few events that could have been (but were not) seizure related. After reading all the side effects of the medication, I realised that they would cause or make worse all the feelings I was already struggling with. I'm just wondering if this would be the reason that you feel these symptoms are worse since you had your seizure? I think you said before that you had been put on medication since then? I don't know from personal experience as I never took the medication but is it something that will settle as your body adjusts to them?

It's harder when you don't feel that you can trust what the doctors are saying to you. There are epilepsy help lines & support groups around the country that you could contact. They will have far more experience & advice you can trust as this is their ONLY field of expertise. I had an epilepsy support worker who was amazingly well informed and would have carried on with her help if I had epilepsy, luckily, this was proved (eventually) to not be the case for me. It would be well worth you contacting these people - their help is in every area of life - home, work, benefits, emotional support etc

Michelle x

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Hi guys was put on lamictal and that made me feel even worse than I did then keppra that was an horrendos drug and then back to lamictal but again I couldn cope with the side effects plus bruising on legs so I spoke to my neuro and he said to come off and I go see him next week! I would rather if I can stay med free the side effects of them r untrue even what is written. So no not taking anything ill see what the neuro says on wed I may also ring that epelipsy group see what they say! I went out last night on works do it did me good getting out for sure. I did have a few drinks but went steady x x

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I felt sick, dizzy all the time, and drunk...not just tipsy...24/7...awful. I used to tell my therapists that it was like I was in a gyroscope. I hated the dizziness and I thought at first it was all due to the Keppra...but alas it wasn't. However, I don't feel that way any longer so there's hope! I thought it would lift all at once, but it did it in stages. Now I only feel dizzy occasionally or at night sometimes. The sickness lifted before my dizziness. It was so hard to make myself eat just to sustain myself because I felt so horrible. Now I NEVER feel sick to my stomach.

I had PTSD really bad as well. Since this stems from the mind, it is sometimes hard to tell if the symptom you're experiencing is from the SAH (Primary) or the psychological trauma from it (Secondary). Either way, it is what you're experiencing so it is REAL. It doesn't matter from where it started. This has also gotten way better. I still have trouble with death, but I no longer wake in the middle of the night dreaming of the hospital or persevering on memories. I counted how many times I thought about some aspect of SAH and back in August (1 year for me), it was about every 15min. Now it is about 1/hour or two and sometimes way longer if I'm busy. Before it was all I wrote about in my journal and now I write about other things.

I hope all of you decrease your symptoms as well. My neuropsychologist told me that they don't like to make any judgments until after the 2 year mark...and things do keep getting better for me...so onward!

~Kris

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It really does help when you know you are not alone in your symptoms. Had three days of painful stabbing pains on the side of the Sah which have been scary but seem to have eased (I hope). What confuses me is my Dr says any new symptoms or vomiting, fever etc then phone straight away whereas when I spoke to the neuros assistant, the nurse whose number I was given on discharge, she says I'm fixed, I'm safer than she is, no danger if coils settle as it won't cause rebleed which scares me, they will see it on my checks and it will be fixed. Surely its not all that simple, she makes out as if there is no risk now. Have an appt. with a neuropsychologist today, hope it helps xx

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Thanks bev, do you think if I ask nicely a Dr will move in with me, just until I get the first year out the way lol. I'm like you, would quite happily have lots of scans to make sure everything is ok and coils are still where they're supposed to be etc xx

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Bev, Early on I was pulled off all pain meds because old Neurologist thought I was having rebound headaches- which I think I maybe was. Anyway he put me on a seizure medication & I felt worse than ever. I only took it a week and threw it away.

Glad you were able to enjoy the party.

This is how I cope. I try real hard not to waste my time worrying about things that may not ever happen- I have a friend that worries about everything and makes her life and family crazy - literally. She has real reason for the concern and worry but on the other hand the time she is a constant unhappy nag to her children and husband ~ I wish with all my heart she would enjoy the time and be thankful for what is good and not all the “what if’s” . What I have learned from being close to this situation is to enjoy the good times and be prepared for something beyond my control. I carry a medication list with my Dr.s names and all my freaking conditions in my wallet. I am much older with grown kids and so I knwo this is a bit different for me. I have updated my living will with stronger language and carry that as well in my purse. May sound silly but it makes me feel secure- In my worse case scenario which would be my brain tumor will grown and I will not be able to make decisions for myself and I feel better knowing that in the rare case that happens my family, friends, doctors and lawyer understand my wishes. I feel I can do nothing more than that “just in case”. I tell people freely that I love them and they make my life better, I sometimes get into slumps where I am not as thankful as I should be but it is not pity for me more like being tired of being sick and tired.

One thing I have found to be interesting is the inspiration you give without knowing you do. I have a few that say I am their rock for being so strong & keeping my sense of humor– where as I look to others I love that have gone through horrible & unthinkable tragedies & have to “deal” with their struggles daily they are my rock.

In life I think if we do not learn lessons from observing others etc we are missing the opportunity to find knowledge that is useful and easily stored for when we need it. It is not to say everyday is a bed of roses but so many lesson are out there that we miss tend to not think enough about.

When my children were young and we both were healthy we took out large life insuracne policies. I wanted to my children to have a live in or constant "nanny" that would provide stability to my boys and woudl take some pressure off my husband if God forbid they were motherless. It gave me comfort to know I had instilled basic good values in them and I knew they would be ok as I felt i was a free enough spirit as a mom that spoke about things all the time and was open with them. It is how I am . I like to be prepared for the worst case scenrio (SP?). And when I do not need my plan it was money well spent to give me piece of mind. I often ask what is the worst thing that can happend??? What coudl you do about it?

Sorry for the babble again but this is how I cope......... I have a plan, baby!

XOX maryb

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Ok did not mean to sound GRIM. I trying to make a point that b4 and after all this head stuff I like to be prepared. :wink::oops:

You have your life in order mary nothing wrong with that! I go see neurologist tomorrow to try figure out whats going no with this constant spaced out weird feeling. I dont really want medication after trying the two and feeling worse but ill see what he says. He has access to all scans so am asking him to break them all down. Also got pre assessment for angigram straight after dont know what that involves. Am shattered today didnt get to bed till 3am got cystitis big time am not worried this is connected to my head for once jusT shattered beyond belief. Bed early for me! Lisa how did your appointment go?X

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It was ok, the Neuro nurse came in with me which was lovely of her. They were just asking what my fears were and I said it was the coils moving, having a rebleed and leaving my kids. The nurse explained about the coiling, what happens if they settle blah blah so it made me feel a bit better but it will be a long time before Im not so scared about it all I think. The neuropsychologist has given me a list of what I have to say to myself lol. I have to tell myself that it is highly unlikely I will have a rebleed, my pains and feeling so ill are healing pains and I will have good and bad days xx

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I'm so glad that the doctor helped alleviate some of your fears intellectually. However, I know our intellect and our emotional states don't always match-up sometimes. As time marches on, your emotional state will become more harmonious with your thinking parts. This is why brochures and stuff doctors give you at first don't always hit the mark and you still feel anxious about your condition. Your nurse was right...you are better off than she is, you've had your brain scanned (something that most people never have) and so you know what you're dealing with and the general population may have tons of aneurysms waiting to explode like ticking time bombs only they have no idea it's coming. We HAD the worst already and now you're being monitored better than most people out there for any head related occurrences. We get prevention-medicine now which is the best kind instead of just reactive-medicine as a situation hits out of the blue. We are lucky in this regard.

Take care and do your maintenance check-ups and you'll be monitored the right amount.

~Kris

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