Constantly searching for an answer...

[Bev897056]

Hi everyone

So I think some of u know my story but I can't seen to get my head around why my bleed has happened, with no apparent cause, will it happen again? Why have I been left with so many neuro symptoms if the blood has nearly absorbed???? Why why why??? I wake up every day asking the same things? I think If I knew The cause I may be able to settle more, or maybe not, coz there would still be the fear of if it would happen again, but will this constant questioning last forever???

Is it just me that feels this way?

Also do u guys still enjoy a drink or 2??? I love my water like but also enjoy a glass of wine or 2 on an evening which I always did before this stupid head thing!!!!

Love 2 u all

Xxxx

[MaryB]

Bev, I read as much as possible about the bleed over and over again, I even ended up making my own personal pamplet so I could maybe "get it". I never really question it happening again as it would be really rare. I had a NASAH as well.

I had a 4 Corona night and my 6 month headache ended - I am thinking I need another one. I have not had wine in 100 years but I did have a beer or two within in a few months. Maybe 3 months? You are still so early on- are you able to talk to your doctors about your fears? I loved my neruo psycholgist. I cannot spell or care to today. But he was so kind and made me feel so at ease with my million and one questions. Maybe you can request a consult?

XOXOX maryB

[SarahLou]

Hi Bev,

Ahhhh... That question 'WHY?'.

Have you spoken to your neuro surgeon, or a consultant, or a neuro nurse specialist? Maybe there are some answers to your questions.

Honey you have to accept the fact though that sometimes there just aren't any answers.

When my hub was first taken ill I wanted answers and it was really tough not to be able to get the answers that you want. You do find an acceptance and understanding about things though.

I personally have never ever worried that SAH will happen again to me.

If it does it does, some of lifes journeys are beyond my control.

As for the drinking, gosh what I wouldn't give for an archers and lemonade with lots of ice!

No, I don't drink anymore.

Take care,

SarahLou Xx

[Sandi K]

Oh that question of why... Yes I still zone in on that almost 2 years after. Not knowing why is frustrating and I know what you mean about wondering how they know it won't happen again.

Statistically, it won't happen again.

I've searched all over the Internet and still do occasionally, searching for reasons why. I've read my medical reports and looked at online medical dictionaries to figure out what it all means. There really isn't enough research on SAH.

I know I have twisted veins going up my neck to my brain. This is not common but not life threatening. I wonder if my twisted veins caused the bleed.

I found some info on copper deficiency through childhood causing malformed or weak blood vessels. At times growing up we didn't have food in the house. Was it copper deficiency.

I've read that women who enter peri-menopause early have a stronger tendency to have an SAH. This could be me.

High blood pressure and stress. I was in a stressful meeting and I'm sure my blood pressure was through the roof at the time.

I was also taking loads of ibuprofen for headaches, sometimes 6 a day along with Cold FX to keep colds at bay. I wonder if the combination of the two caused it or if too many ibuprofen caused it.

Or was it truly just like being struck by lightening? I don't think so. Something caused it and not enough research has been done to be able to pinpoint why.

Sandi K. Xoxoxo

[Shawcar]

Oh, I so do these very same things! I'm just 6 weeks out from my NASAH (love the acronym) and everyday I wonder, why? And, more often, will it happen again? I saw my PCP/GP today and she gave me some literature on PTSD. One symptom is obsessing about the traumatic event. If you haven't already done so, you might look into ways to handle PTSD symptoms. I'm going to a guided meditation class this week - I will see if that helps. Something will have to relieve all the questions and fears in my head! Good luck.

Shellie

[Bev897056]

Thanks for your replies! I suppose its one of those things then, but never stops u wondering why! I swear myn was due to stress, always been stressy & then had a little boy which is quite stressful, as well as working and moving house,but then people say, well I have a child and work full time and my brain hasn't bled, so I don't know! & i did drink quite a bit,not like an alcoholic, but maybe all this contributed!?

Im glad that the stats r low for another bleed. The consultans G.P was convinced that they would find something once the blood had absorbed like an AVM or a small tumour or a cavonoma,because he said im so young (30)-but they dont appear to have,and i notice that most of you are still young...!Im still waiting for my consultation for him to defs say that im all clear as he was waiting for the report to go with the MRI!-so im waiting till Oct.

I do wanner try Meditation, something that i have never thought about,but maybe this will chill me out!

There has never been any support from the hospital, they just sent me home and said take it easy and inform the DVLA and thats it, so i have been left wondering from day 1! I am starting CBT Counselling in a month - there is a mega waiting list so they dont exactly give u it when needed, but for now, im just trying to get on with it all!

xxx

[Gill C]

A month or so ago at the Wessex support group we had the wonderful chance to question a nuero cons & we did grill him about why things happened & what links there were to genetics & stress etc.

I had suffered from migraines since puberty & when my anni inflated I had 4 migraines on the same day one after the other. The anni was on my right posterier communicating artery & I think a weakness there caused my migraines cos the ones I had after my anni inflated were exactly the same in aura & pins & needles. I asked the question but was told there is no link, several people also reported that they had had migraines before but not after. Strangely I have not had a single migraine since being clipped. We also asked about high blood pressure & stress, high bp is a factor but not everyone is stressed at the time. On saying that I don't think the links are fully explored.

The highest risk factor that is researched is smoking & he was most adamant that if you smoke the risks are far higher.

Like the other ladies say then internet is a great tool but sometimes it can make us worry more. I googled lots after leaving hospital & frightened myself too much so now I don;t google sah at all. It does come a time when you have o accept the chances of it happening again are so slim its not worth wasting your life living in fear. I think for me it was a good 6 months before I stopped praying to wake up the next day.

Time really is a great healer so take things at your own pace & you will come to accept that this was a one off incident & not going to happen again any time soon

take care hon xxx

[Winb143]

My Dads Sister, Nellie, really Ellen had an op when I was a little girl, my Dad said her husband hit her (wicked minded my Dad)

When her sons got older one died of head complaint..dunno what they called it but

I think it was same as his Mums. All Aunt Nell remembered was going to turn the light on, she had a deep dent in her temple

She used to run her own business and was never the same as she used to swear at people in the street. Shame really xx

Anyway, I have smoked, drank wine and enjoyed life. I no longer drink or smoke - talk about bolting stable door lol I still enjoy

myself and am grateful to be alive. I look at every day as a blessing. I'll never take my family for granted as some were soooo

good to me. Be happy and Love all those who love you, show them how much you care and live every day with love in your

heart xxxxxxxxxx Preacher Winb143 (joke)

Be Well All xxxxxxxxxxxx

[cathmat]

Hi all hope you are all well ,I had to comment on the thread what I wouldn't give for answers !!! Not just about my health but about work as well . I wishihad a crystal ball to see my future because it feels so bleak at the moment . My vertigo is so bad I feel it's ruling my life, is 9 months still early days ?

[MaryB]

Cathmat, I am in the same boat. not with vertigo but jsut tired of beign sick and tired..ready to change the book and read something new! Sorry you feel so bad. I understand. I am pulling at my boot straps as hard as I can and they won't comeeee up!

maryb

[Shawcar]

Again, it just helps knowing I'm not alone! I'm VERY new in my recovering (just over 6 weeks). I went to work today - I kinda' forced my doctors to sign off on max 2 hrs and only lite duty (I'm a nurse). Have to say, it sure felt good being out of the house and somewhat productive, but it does drive me crazy how get this (false) hope that I'm miraculously cured because I feel decent then...boom- another headache or vertigo or extreme fatigue. But, I can come here and see that others who are much farther along experience the same or similar symptoms. Helps me to remember to patient and gentle with myself. Cathmat...have you read the letter from your brain postd here? While it didbn't give me answers, it did help me feel, well, grateful. Good luck (again)

Shellie

[marycharisa]

I agree with all of you. Today is has been 3 months since my NASAH, and I feel better, but still have pressure in my head, nausea, and headaches. Oh, and my neurologist went missing! I have tried to get in to see him since Aug 6th and have left many messages, regarding the head pain and pressure. The office staff is clueless and I cannot believe an MD would only be in 2 times a week, then have 2 vacations, and leave no covering MD! And use an answering machine! I have only seen him one time, and never have pestered him or was a jerk. I cannot figure out what happened, so I found a new neurologist, who seems very nice, but wanted to put me on Pamelor, and I just am afraid of TCA's. So she gave me Robaxin which made the headaches worse! I am also a nurse who is back to work full time in a New York City ER, and am getting upset about the headaches and nausea. It seems like there is no good literature out there about recovery. I keep returning to this site for answers and support, it helps to know I am not alone. Thank you.

[MaryB]

Hi I am coming up on my 1 year anniversary and I am a mess. I really thought I would so much further along and I am so full of self doubt. Do I have more headaches again because I am thinking more? Why can’t I get pass a ½ a day? Will this ever even out?

I watched a TV show tonight- I would tell you the name but I cannot remember about a live hospital cases, a man was given a new heart from a jogger that “suddenly clasped with the worse headache of his life”. I was so taken back when the surgeon said that, I cannot explain the new set of emotions I am going through. I certainly feel as if I have a clearer mind. I watched Oprah Sunday Show with Jill Bolte Taylor, although I have seen her on TED TV, this was a different interview she had on Oprah. I get angry that people don’t want to educate themselves and be enlightened by this. It is not just because of our own brain injury but what about a loved one with a stroke would you not want to be better educated to understand what that stroke survivor is thinking?

http://www.oprah.com/own-super-soul-sunday/Full-Episode-Oprah-and-Dr-Jill-Bolte-Taylor-VideoI

I don’t know maybe I am depressed more than I think? I have been given a second chance to live – to be reborn in a sense but why am I still asking so many questions? Why can’t I just go with it? IS it because you never feel well? Can’t make any real plans? You have to be strategic with your energy? That in itself is exhausting. Spelling is exhausting, yea that is why I have more headaches- spelling. I do not even come close to getting it right if I am taking notes. I should have shown the Dr. my notes I took while he was talking. I did not even come close to spelling one word correctly.

As she bangs her head on table……….LOL

[Gill C]

Mary I was a mess on my 1st anniversary too. I think its because its the first big milestone we reach & we expect to be so much better cos no one told us it would take more than a year!! I was told 6 months for recovery & after my clipping my Neuro said there was no reason we couldnt fly to Turkey 2 weeks later!! I very unrealistically thought I would be ok to fly because he said it was ok, I couldn't even walk upstairs or have a shower without shaking with fatigue afterwards never mind climb the many steps to the apartment we were in!!

I think when a neuro tells us 6 months or that we should be normal we believe them cos after all they are the experts & have seen this many times before. But hell no we are the experts in what recovery is like, most of them dont see us again or have any idea what life is like post sah so I think they should be careful in what they say.

I can say from my point of view the headaches are generally better 2 years on but my fatigue is still pretty high. I know now this is due to suffering vasospasms during & on 3 occasions after the op but I didn't have a bleed so its not really right to compare.

Hugs to you Mary, you are wonderfully strong woman & things will get easier I'm sure, sooner rather than later for all of us xxx

[jillbb]

Dear Mary So sorry you are feeling so bad, since I have joined. BHG your messages and courage have really helped me. A few days ago I never thought. ICpuld find my way round this web site, but now I am actual.y writing messages even though they zare in the wro ng forum at times. My sony tablet is not as easy to type with. and I cant fi nd. how to correct words. So please ex cuse mistakes, I know one should not blame ones tools! !keep going. Love Jill

[kpaggett]

So before my NASAH I was a neurophysiologist. Even I don't know exactly what happened and I reviewed my scans over and over and the hospital notes over and over. Blood was where it wasn't suppose to be...no one knows how it got there. No aneurysm. No arterial/venous malformations. What Happened then? I'll never know, BUT I can take comfort in the statistics for our NASAH group in that the likelihood of it happening again is so minute.

I also suffered from PTSD and relived things over and over or thought about the event over and over. I cried over and over. It is getting better, but there's still so far to go yet. I was first told that I would be fine in a week. !!!!! Then I was told that 90% of the recovery takes place in the first 3months. I was so depressed at 3months because my vertigo was so bad. Then I heard two years before anyone would want to say. I am 1 year and I doubt that the two year thing is right. I am grateful to hear the senior members' posts as they give me a since that I will be OK and I will move on and I may still have deficits but I can be stronger than them and they don't have to define me.

I hope, Bev and Mary that you both feel better as I write this. Mary, I'm so glad you decided to see the neuropsychologist! Mine really helps me

~Kris

[marycharisa]

Mary, I was watching the same show! It was NY Medicine, and the part about the jogger took my breath away, as well! It is so scary how fragile life is.

[Louise]

12yrs down the line I still wonder 'why' still have no answer, but now I dont let it bother me because lifes too short to wonder worry 'why'

I got to my first ani and thought 'is this it' but pleased to say that no there were still lots & lots & lots of more healing even now I still feel Im improving so never think 'is this it'

dont try to work it out just get on with living - you've been giving that chance....others arent so fortunate

ok off the soap box Im off...take care all.