Welcome Denise!

[Karen]

Hi Denise,

A very warm welcome to the site.....look forward to hearing from you!

Love Karen x

[Guest Denise]

Hi Karen, thanks for the welcome.

I send a reply last night, but don't see it anywhere, so something must have been wrong.

Anyway, I have read some posts here and I am so glad to have a place to go where others know what I am going through.

My family and friends are wonderful, but someone whose actually had or has the same experience is so important to me right now.

I am 46 years old, and I have a wonderful husband, 4 kids and they are all grown and gone. Our youngest is 22. We have 4 grandchildren. Started young.

I live in NY, USA.

My SAH happened to me on Oct. 25, 2006.

Earlier in the day I do remember feeling what I called woozy. But I was busy doing my housework and trying to get things done so that I could give myself a pedicure by 1pm that day. Matter of fact, I had spoke to my best friend that morning and she asked what my plans for the day were and when I told her it was to get my housework done so I can start my toes by 1, she laughed and said it must be nice that getting your pedicure done is your biggest problem.

I did think about that statement and thought wow, I am just so spoiled.

Anyway, when I realzied I felt woozy, I thought maybe it was because I hadn't eaten and I saw it was 12:30, so I ate a sandwhich for lunch thinking that was the problem.

Well, I stayed woozy, but not enough to bother me or stop me from doing my toes.

That night I bent down to kiss my husband good night and it was 10:15, when I picked my head up I had the most painful headache hit me so fast, I coulldn't believe it. My husband told me to take something right away so I headed to the bathroom for tylenol, but on the way I realized I couldn't move my head in any direction. So I headed back to my husband and within minutes, I was throwing up and for 2 hours this went on and finally to the hosptial we went.

We live upstate NY but near the border of Pennsilvania, and their hospital is nicer so we went there. Well, they ended up flying me in a helicopter to Philadelphia, which by car is 5 hours from my house! It was only 1 hour by helicopter.

Like others I have read here, I was in ICU for 3 days, then in a regular room for 5. I had a angio the first day and the day before I left.

The first one was negative and the last one was positive.

I looked for a neurosergeon since I was home Nov 3rd, but until 2 weeks ago couldn't find one in my insurance co network and within an hour from my house. Then I found one but went through so much to get all my films and records from the PA hosptials and this Dr wouldn't see me without everything. I finally saw her today.

She has ordered more tests, a ct angiogram and another mri. She said she has to find out where the bleed came from before she can tell me anything else.

So, tomorrow I will set those things up and get back to her soon as possible.

My question is this, is SAH a stroke?

And what are the chances of having this again?

Like most of you guys here, I am tired all the time, and these headaches, well I feel I wake up with one and go through the day with one and go to bed with one. I did just get over a sinus infection, that was very painful, so it makes the headaches seem bearable.

I also shake sometimes, I didn't see any posts of others who said they shake. I shake worse if I am upset or if I over do something.

At the hospital they said it is normal, it stopped after I was home for a few days, but then it started again.

Oh, and my regular Dr put me on an antidepressant 4 weeks ago. I was having anxiety attacks, still do sometimes but they are small ones.

Anyway, I am going to go read some more posts before going to bed.

I sure do wish everyone well.

Denise

[Louise]

Hey Denise

A warm welcome from me too.

Your question its not a stroke though very similar I think, I cant actually remember what I've been told, my memory was affected by it.

Every case is sooooooooo different.

Wow & some people think our NHS is pretty bad, thankfully I didnt have to go through all that your going through trying to find a neurosergeon... :?

I wish you well Denise & if you've any questions you'll find that someone here will have an input.

Take care

Louise.x

[Skippy]

Hey Denise

Welcome to the site.

From what I can remember an SAH isn't a stroke but can cause one and have similar affects. As for the shaking I find that if I'm upset I shake more than I used to but I put that down to adrenalin more than anything.

You'll find a great source of support here. We've all had different recovery rates and experiences from an SAH but we all know first hand what each of is going through.

Feel free to chat, ask questions, have a moan and most importantly have a lot of fun and a great laugh. I always say it but - welcome to the best virtual family there is.

If I don't get a chance to say it have a great Christmas despite the SAH and take it easy, and Karen's best advice - listen to your body.

Love Sami xx

[rince]

Here we go another opinion!

SAH is a stroke. Haemorrhagic stroke as opposed to the more common ischaemic stroke. Roughly two thirds of all strokes are ischaemic which is where the blood to an area of the brain is either blocked or reduced. Symptons are different as are the methods of treatment (you don't want to be given anti coagulants with a SAH!).

Shame about the disjointed medical care you received Denise, in this country (UK) you would probably still be in hospital until properly diagnosed. I can't imagine having to of chosen a Neurologist whilst in your position. I hope that you get resolution ASAP.

Cheers

Scott

[Skippy]

Right - now I'm confused. Why do they tell you then, when they're coiling etc, that the operation may cause a stroke if you've already had one in effect or are they referring to the other kind of stroke?

I'm telling you Blonde and confused is so not good!!!

Hahahahaha

Sami xxx

[rince]

Different kind of strokes, is what I was told. I had a minor "Stroke" whilst being coiled and caused the usual "Stroke" symptoms.....

try

http://www.stroke.org.uk/information/publications_list/what_is_a_stroke/causes_of_stroke.html

If the link works it explains it quite well.

Scott

[Karen]

Hi Guy's,

My understanding is that a stroke is an interruption of the blood flow through the arteries in the brain.....this can be caused either by a clot or a haemorrhage......due to the interruption of the blood flow that's why some of us end up with brain damage. SAH is classified as a stroke.....unless anybody tells me any different......when I had my SAH I was temporarily paralysed down my left side due to the interruption of the blood supply.

Denise, as far as I've been told it is unlikely that we will have another SAH....for me personally, my aneurysm hasn't been totally occluded by the coiling and therefore I'm presuming that I'll be regularly screened. I think that it takes a great deal of time to get over the impact of the SAH and the life changes......time is a great healer though and listening to others that have been through the same is also great therapy.

There are a few guy's on this site who've had a SAH, but the medics couldn't find the cause etc........I know that they've found this fact hard to deal with....most of us have had the bleed due to a burst aneurysm and therefore we've been "fixed" as such......but the mental trauma is the same for us all.

I certainly had the shakes/tremors after the SAH ....... especially with my hands (better now though!)....I believe that this is fairly common......anxiety can certainly make you a lot worse and sometimes I can be quite shaky (especially my head) when I wake up in the morning. I'm on beta blockers also for heart flutters and anxiety, but I believe that these drugs also help with tremors etc. Stress is a definite factor Denise and your Doctor should be able to help you out with the shakes and anxiety problems.

Love Karen x

[Karen]

Hi to all,

Re: Stroke? ...... I will put some stroke info under the "Articles" section in the next couple of days.. I must admit that it was many months before I realised that SAH was classified as a stoke. There seems to be many different types of stroke and it's probably an article that I should have already put on this site.

Love K x

[rince]

Hi Karen,

Is just another label for what we've been through, if you'd asked me about Brain Haemorraghes 3yrs & 5mnths ago I would of said it was a fatal condition, if you had asked the same about STROKE I would of said that you never recover from it's effects. You'll probably never be able to list everything that people want to know about SAH because it can be so different from person to person. What I like about this MB is that it is not an impersonal list of cause and effect like so many medical sites are. Putting a label on what you've gone through shouldn't be underestimated, I know that I felt a lot better about what I'd gone through when I knew that it was a stroke.

People think they understand stroke better than SAH and it wasn't for me that it was important but it made conversation with others easier. When people ask me now what happened I reply "I had a brain haemorraghe and stroke" they 95% of the time key in on the STROKE aspect of it because they can relate to it better. The standard follow up question used to be "Are you OK now?" and as you understand Karen that's not an easy question to answer. Now they ask about how someone "so young" (ie under 60 in their minds but specifically under 40) could suffer something like that. I also think that generally people don't see STROKE as something you can get better from, personally I think the same about SAH but there is no depth of knowledge about SAH out there. So we are helping not only with public awareness of SAH but STROKE as well, after all if you've had a SAH you've had a STROKE.

I know that STROKE is an emotive term and some people don't want to think that they've had one. The common preconception of STROKE is an elderly person who's lost virtually all their faculties, we know different. As I said earlier it's another label, and I for one like labels as it lets people know what's happened and what the likely after effects are. Also it allows people to show how far they've come and what to expect along the way.

Sorry rant over.......

Scott

X.

[Karen]

Hi Scott,

I agree with you totally.....may be when people ask me in future, I might just say that I've had a stroke. It's probably a lot more easier for them to understand and I for one, won't feel quite so frustrated at trying to explain why I'm like I am.

I've just added a "SAH Information" button and I'm going to put all of the factual stuff that I've gathered from Wikipedia, in one place. It's all very trial and error with the site and that's why it's good for me to get some feedback, whether it be good or bad.

Anyway, must go...been doing the admin most of this evening and my eyes are tired.......you're welcome to have a rant anytime!

[Guest Denise]

Thank you all so much for your reply.

I sure feel much better today. I did make my appointments for my MRI and MRA, they will be done on the 26th.

I saw my regular Dr today, he put me on 30 mg of Cymbalta 5 weeks ago and now he's putting me on 60mg for the next 2 months.

I asked him if I had a stroke and he said it is a form of stroke.

I asked him what my chances are of having another one and he said since I had one, my chances are higher than someone who never had one, but that because I quit smoking, I also lowered my chance, but my family history and that I already had one are still factors.

I remember when I was in the hosptial I would say I feel like I had a stroke.

I've been trying to explain to people that I feel like a fish swimming the wrong way in a fast moving ocean wave and everything I do makes me so tired.

And yes, I do notice that I shake more when I am tired or upset. Sometimes I feel someone might think I am slow dancing with myself.

But I sure have learned to take things in stride.

Today for example, I had to get something from the spare room closet, and found myself standing at my husbands closet wondering what I was doing there, then I remembered and was able to laugh and thought, well at least it was a closet, not the garbage can or the car.

I really worry because my aunt and grandmother both suffered so bad from strokes. My aunt died 2 years ago, so young with Dementia and she had strokes for years.

But it does make more sense for me to call it a stroke. But when I first found out it was a "stroke" I cried for hours and wondered why no one just called it what it was, I thought everyone was trying to keep me in the dark. But I do know I feel I had a stroke.

Well, again you have all been so kind and I come here and read your posts before going to bed at night and it helps to know your here and I am sorry this happened to any of us, but I am glad I found you guys.

Denise

[Karen]

Hi Denise,

Good luck with your scans on the 26th................glad that you've got some answers to your questions and I'm presuming that it's your Anti depressants that have been increased?

I drove myself mad with the question "is this going to happen again?"....... it does get easier with time and I think that it took me up to 12 months post SAH to find acceptance of the fact that I could either drive myself mental with worry over something that might or might not happen, or make the most of life and adapt to who I've become. Stress is definetly not good post SAH and it really does seem to affect the brain. My indicator is normally headaches, fatigue and increased dizziness.

It can be a long journey, but it's comforting to know that others have experienced the same. It seems to be normal to have highs and lows and the journey can be a bit of a rollercoaster ride. It does however, all improve with time, although recovery is an individual thing. I'm 17 months post SAH and I'm still improving......albeit at a snails pace!!

The short term memory problem does get better, but I used to be a bit scatty before the SAH anyway......so some of that was already with me!.....however, my memory is still not as good as it was and I have to write lists. I too often walk into a room and forget the reason why.....I just walk straight back out and then normally I remember again. It is annoying though........if I'm stressed/tired then it's definetly worse.

Catch you later,

Love K x

[Guest Denise]

Hi Karen,

Yes, it is the anti depressant the Dr is increasing. I am a high anxiety type person to begin with, never needed tranquilizing before, but I know that right now I am on edge all the time.

I am trying to tell myself not to stress out about it, but it's easier to say. I'm hoping after these tests next week we will get to the bottom of this and I can't sit around waiting for the next one, but soon as these headahces subside and the shaking I will feel better. Or so I hope.

I don't feel dizzy, actually that might have been my normal state LOL, but I do also feel tired and the headaches and shakes are worse when I am over stressing.

Is there anyone here on this site that has had a second episode?

I just don't want to sound like I am whinning, I know what I am looking for is impossible, and that is some sort of promise that it won't happen again.

Did you guys here smoke and if so have you quit?

And what about family history of strokes?

My sister and my nail girl and a few others who smoke are refusing to believe smoking had anything to do with this. Me, I believe it and I'm glad I am done smoking, but sometimes the thought to just have one cigarette is so tempting. But then I hear my Dr say "only light up if your feeling especially lucky", well that and the fact that my son and husband also quit and I know how hard it was for them and wouldn't risk my health or theirs so just one more cigarette is out of the question.

Anyway, thanks for letting me ramble, I am trying to make my conversations with friends and family less about me and this SAH, so being able to post here can be an outlet.

Oh and one more question for tonight, how long before I should be driving again? I have driven but only a few miles away twice.

When my husband takes me out on the weekend on the highway, it seems I am zooming through a tunnel, so I know I am not ready for that yet.

Anyway, I hope everyone has a great weekend.

Thanks again.

Denise

[rince]

Hi Denise,

My neuro was quite off hand when he asked me if I smoked (apparently I can't remember most of the early weeks) and said that was the number one factor in why it happened to me. Smoking amongst all the other evil stuff it does to your body thins the arteries and venal walls. So despite all the other risk factors (and believe me there were a few) the guy who knows best reckons that it was smoking that was the number one driver behind the why. As he explained to me later it's not the reason why you had an aneurysm but it is why it burst THEN, as opposed to later or not at all. Giving up was easy for me as I was flat on my back and unconcious for three weeks! By the time I was able to smoke I couldn't remember that I had!

As for driving our DVLA (who regulates who can and can't drive in the UK) will take away your license when the SAH occurs and by their guidelines it could be a year before they give back the right to drive. In practise most people will receive it back quite quickly (within months). Personally I didn't drive for over 18 months due to other factors (Hydrocephalus and shunt insertion).

I hope that you can have as normal as possible time over Christmas, get plenty of rest and remember you've had a serious illness so take it easy.

Scott

X.

[Karen]

Hi Wendy,

I think that Scott has covered most of your questions pretty well and my answers are much the same.

I had a probable small warning bleed 4 years prior to this SAH.....but the medics failed to recognise what I had and it wasn't until about 6 weeks later that they actually gave me a MRI scan and the results were inconclusive. I was basically misdiagnosed all the way along, from the initial consultation with the Doctor. I was told that it could be stress, neck problem etc etc. I knew that it wasn't.....it was far too horrendous just for that. It was a mess from start to finish and it was only looking up my symptoms on the internet that I found out what it might be and suggested this to the Doctor, I also had sight problems and pain around my eye. I went back to work after a fortnight, but eventually had to stop working as I wasn't fit enough.

When I had the SAH this time, my Neuro Consultant was appalled that 4 years earlier I had been misdiagnosed and that I should have been given a lumbar puncture as the blood still shows up in the spinal fluid weeks and months later. Anyway, it seems to be pretty common that SAH isn't diagnosed and people are sent away with horrendous consequences, hence the high mortality rate.

The only reason why this happened to me again, was that I should have been fixed the first time around, but I wasn't. The Aneurysm was obviously quite small at that stage and a clot must have formed.....makes me shudder though when I look back.......not sure how my artery held together through the next four years.

I wasn't allowed to drive for 3 months.......but even now I only make very short journeys, as I don't feel capable of doing long drives, especially with my bad eye...........if I have a bad dizzy day, then I don't drive at all. I think that you will know when you're capable of driving again.......if you don't feel comfortable doing it, then don't, there's a few of us on the board that have had problems getting back behind the wheel, so it's not unusual to feel apprehensive.

Catch you later,

Love K x

[Annie]

Hi Denise,

I'm glad you have found some comfort here. I have not responded to your questions because others here are more qualified based on their experiences. My SAH was a non aneurysm, so I was told that the liklihood of it happening again was practically nil. But I still worry with every headache.

I loved your description of the fish swimming up stream!! Perfect! It's still hard to make friends understand that I'm just not the same person stamina wise OR memory wise. The lack of energy and the forgetting can both be read as apathy by sensitive people, so I sometimes refer them to this site so they can read about it too.

I am in Ohio, so it's nice to hear from another Yank. You'll find it interesting to read about the health care that our UK friends have. Even with all of it's problems, at least they HAVE one!! I was really surprised to read thought that your hospital sent you home to "find" yourself a neurosurgeon for follow up! Gee, thanks a lot for your help, huh??

I was fortunate to be online with Karen when she first set this site up. But I can relate to searching for a long time before finding any SAH support. You are so very early in your recovery and I'm sure the questions are overwhelming. But you will see that things settle a bit as you go along. For now, don't try to figure everything out. You should concentrate on your care and rest and give your body time to make some adjustments. As far as reocurrances, I would think that you'd be less likely to suffer another since you are under the regular care of a specialist now. Can't hurt to be positive!

It was also interesting for me to read about "is it a stroke or not". That has been helpful to me since people usually ask. Now I know to say it was a "form" of one. Good answer!

hugs from Ohio,

Annie

[Karen]

Hi Annie,

Great advice!

I hope that you are keeping well yourself......I can sense that by your postings you've been struggling a bit lately. I don't think that this time of the year helps, lots to do and cope with.

Take care,

Love and hugs, Karen xx

[Annie]

As usual, Karen, you are so perceptive! Yes, it's been a rough time for me lately. And yes, too, that the holidays add their own special stresses. It's been mostly fatigue for me. I get frustrated that I'm still dealing with that. Then I read the "letter from your brain" and realized that I STILL have some letting go to do as far as my expectations. I think the hardest thing for me lately is that it's so easy for everyone else to just sweep it under the rug and forget that life is different for me now. Jack, though, is just wonderful. After all, it was very traumatic for him too, and has changed his life as well.

Over all however, I still feel really lucky and well loved. Have a very Merry if I don't talk to you before Tuesday!! Thank you for the gift of this site.

xo,

Annie

[Karen]

Hi Annie,

I hope that you and Jack also have a very happy christmas and all good wishes for a happy and healthy new year.

I know what you mean about the fatigue still being an issue. I have a tendency to have bouts of it as well. The fatigue has improved considerably this month and I'm getting less headaches which is a bonus. Sometimes I try to work through the fatigue and keep going, but it normally catches up with me. Mid afternoon is usually when I start to feel my body draining of energy, sometimes I just put my feet up and have a quiet hour. I very rarely tend to sleep now, but I just need to switch off and re-charge my batteries with some time out.

For me, accepting the person that I've now become, came as quite a relief. I became fed up with fighting against both the physical and mental problems. I think that I felt pressure by other peoples expectations to "get better" and not "give in" as such and the more I failed the more miserable I became. I may not get any better than I am now, who knows, but any further improvement, however small, will be a bonus. I haven't given up hope, but the relief of accepting my limitations has definetly lightened the load.

Anyway, must go, as way past my bedtime now!

Love and hugs to you,

K xxxxx

[Guest Denise]

Hey Scott,

Thanks for clearing that up. I know my Dr said smoking did something to the arteries but I couldn't remember what, and thining them out makes sense. I just know there are some people who want to know how smoking could do this. We all think of things like cancer and such as causes of smoking, but stroke isn't usually mentioned.

Resting is important I gather from all I read here. I don't do enough of it and that might be where some of my headaches come from. Thanks for the info and happy holidays to you and yours.

Denise

[Guest Denise]

Hi Annie,

So are you and I the only people on here from the USA?

I find it hard to believe there aren't more people here. I am going to give my Dr the site to pass on to other people.

I look forward to coming here every night, just knowing there are others who understand out in the world makes me feel better. Maybe its that misery loves company thing, but I really felt all alone until I found this site.

I actually don't feel as miserable anymore. Before I came here, I didn't know if still having the headaches was normal, no one told me much, I was on my own. As with having to find my own Neurosurgeon, that is because I was from out of state from the first hospital. And before coming here, I felt terrible for feeling so tired, and tried to push myself more because I didn't know that recovery could last so long.

On Christmas it will be 2 months since this happened. And I've never had anything that took this long to bounce back from.

I just can't wait to get this MRI and MRA done on Tuesday and get back to the Dr and find out once and for all what to do from here.

I was told at the hospital that mine was a non aneurysm, but now the Dr said the one test was negative and the one was positive, so I don't know what to make of any of it.

Well, I do thank you for your response.

I hope you and everyone else has a wonder holiday. Hard to believe it is that time of year already.

My husband is going to take me to NYC to Radio City to see the Christmas Spectacular. So I am excited about that.

Our older kids and the grandkids live far away so we won't be able to see them, but our youngest son (23) will come with us and we will have a nice time.

Denise

[Karen]

Hi Denise,

I just spotted that I called you "Wendy" in one of my postings, so apologies! I must have been having a funny five minutes with my brain! (I do get quite a few of these!)

I think that we have about 4 or 5 members that post on this site, who come from the States. Like Annie says, it's interesting hearing about the different health care systems between the two countries.

I'm glad that you are able to get some comfort from the site and the knowledge that you're not on you own. I started this site in August 2006, so it's relatively new, but it's gaining strength minute by minute and it's coming fairly high in the search engines now. I haven't found any other site that's specific to SAH and I also wanted not just to make it a medical site, but for people to find friends, hence the "Green Room"....... where we talk about anything and everything, even the weather! There's some very lovely people here and we don't mind anybody having a moan or groan.....I think that we're all entitled to the odd one!

What's the Christmas Spectacular? Sounds like fun! Hope that you have a great time!

Good luck with the scans on Tuesday.....hopefully, it will give you some answers or at least some peace of mind.

Merry Christmas to you and your family,

Love K xx

[Annie]

Hi Denise and Karen,

Thanks for your notes, girls! Denise, some of the other US posters are from Alabama, Las Vegas, and I think Louisiana??? memory!!! :/ I feel bad that the hospital left you with so little information. But it must be common with the SAH crowd. I'm guessing that some of the other stroke victims require so much more attention that it's easy for the hospital to just wash their hands of us and say bye bye. I am very interested to hear what your angios showed if you ever find out. If there was a positive on the second one, then was there an aneurysm that clotted itself?

I remember filling out the questionaire from the hospital a few months after. I hope it did some good. I really stressed the lack of after care and how hard it is to get answers once you're released.

Love and Merry Merry Christmas!

Annie

[rince]

Thing to remember is that having had a SAH we're not best placed to remember what we were told in hospital, well at least I'm not. When I had mine I collapsed and had a fit, but when I came around I was seemingly fully aware and in control of my faculties but the thing is I can't remember a thing about that period of time between coming around and two days later having it coiled (The next three weeks or so are a complete blank as well). So I could of been told lots about my particular condition but I've got no way of knowing. Makes the whole concept of "informed and aware" consent a bit dubious, because in that short period between haemorraghe and coiling I was a completely different person. I've been told I was a nightmare ignoring medical advice, getting up, swearing at nurses and doctors, being rude etc etc All not the behaviour that I would of expected from me but apparently that's one of the symptons or side effects of a ABI (Aquired Brain Injury). (another acronym for you all to get!)

Scott

X.