My SAH @ 25

[Guest Samijoliz]

Hi, my name is Samantha, people call me that, or Sam, or Sami. I'm from the Washington DC area. I had my SAH on the 18th of April of last year, just before my 26th birthday.

I've had migraines since my teens, often accompanied with hazed vision/tunnel vision/seeing red or green. They were quite painful, and nothing would remedy them. So when I had my SAH, I didn't know what was going on, I just thought it was a migraine.

My case, I guess, is strange, I believed that it was caused by stress, but I cannot prove that. It's just that the health issues and circumstances that led up to it were stress-related. I also have a clot on the left side of my brain, below where the bleed occurred. I'm on asprin-therapy now, but since I've been in and out of work (and hence unable to get steady health insurance), I haven't really gotten a clear picture of what happened to me. Blessedly I have a new and better job, and I have an appointment with a new neurologist next thursday. We'll see what he can tell me.

Prior to my SAH, I had been experiencing chest pains, and my heart rate was about 120bpm resting. It was the chest pains that had sent me to the Emergency Room. The day my bleed occurred, I was in a pretty tense situation at work (long story, another time), and I remember feeling a spreading pain in my head. It was kind of dull, though. I had been experiencing what I thought was the longest migraine of my life, at that time about a month in duration. Apparently I have a high threshold for pain. :? I had been taking about 600 milligrams of ibuprofen three times a day to keep the pain to what I considered to be "bearable", and I was drinking energy drinks like water, because I couldn't sleep due to the pain.

My chest pains started acting up again that afternoon, and I finally gave in and went to the ER. I told the doctor that I was having chest pains, and he asked me if I was having any other pain. I said, matter-of-factly that yes, I had been having this headache for about a month. They did the CT scan, and that was when they found the bleed.

They never found what caused it, and to be honest, those early days were far easier on me than these past nine months have been. I was in the hospital for six days, two of them in the neuroscience intensive care unit. They only let me go home because from what they could see the bleed had stopped, and they had run out of tests to do.

However...

It seems like the blood is not being reabsorbed by my body. THIS is what's painful. When it's the worst, I feel as if there's this vise pressing on the left side of my head, and the only thing that dulls it is if I press against it, and I can't do that for long, because then that begins to hurt. I sleep so much now, trying to get rid of the pain, the only thing that works are heavy sedative type medications.

I was out of work for a month, should have stayed out longer, but I was not financially prepared for that (I should have stayed home, but I feared for that crappy job and begged to be released to work...bad idea), not to mention a single woman with no kids who does no drugs in the state of Virginia can't get much in the form of government assistance. That's pretty sick to me, but what can you do? I've tried so many times. I'm afraid to try apply for disability, because I know they'll probably reject me. So I just go on as best I can. I work and sleep. I work because I need to pay to upkeep the place where I sleep. Outside of that I have no life, because I'm in pain every day and tired. The few days that I'm not in pain are like heaven.

My life is a cycle of pain which causes me to take heavy sedative meds, which take away my apetite, which keep me from eating regularly for a few weeks, which only make the headaches continue, which keep me on the drugs, which continue to take away my apetite. I had my first nourishing meal since before Christmas just yesterday. I ate so much, it was like my body was trying to store up for when this happens again. I've lost 30 pounds, and my hair is starting to fall out now. That might be due to the asprin therapy. I'm too young to be on blood thinners.

I went to the ER this past friday, as I usually wake up with my attacks between 1 and 4 in the morning. They're so painful I can barely lay my head on my pillow. The ER treats them like migraines, because they say I have a "stable bleed". I wish they would not, but what can I do? They almost re-admitted me this past Friday, but pulled back at the last minute, citing the "stable bleed" theory. I do not know what a stable bleed is, hopefully my new neurologist will be able to tell me what that means. They keep prescribing me migraine medications, but none of them work. The only thing that works to alleviate the pain is percocet, and if I'm prescribed that regularly, I might as well give up all thought of extracurricular activities. On percocet I sleep and dream vividly, but that's it. In the ER I'm usually on an IV for pain, and once they give me that, it's off to the house to sleep for the rest of the day, or weekend if I'm lucky and my attack happens on a Friday.

The pain in my head has gotten gradually worse since my SAH. I'm worried, but since I've been underinsured (the insurance I had didn't cover my SAH or the subsequent upkeep, now I have to file bankruptcy), I haven't gotten many answers. I came across this site on wikipedia.

Anyone else out there on a steady stream of painkillers, trying to just keep going? School is on hold, church is most of the time out of the question, I don't even go out anymore. I just try to keep the pain down enough so I can make it to my job. I'm afraid of losing it, but my employers seem understanding...for now.

[Holly]

Welcome to the site Samantha.

I read your story, and I really feel for you. When I hear stories like yours I really count myself lucky that here in the UK we have the NHS, National Health Service. We don't have to pay for private health insurance, although we can if we want to. We pay for Health Care through our taxes.

You will find all of the people on this site very friendly and helpful.

Please take care, loads of hugs,

H xx

[Guest Samijoliz]

Thank you for the warm welcome, Holly. I like your avatar, it's cute.

I wish that I could move sometimes, but at least I'm blessed with good insurance now. Here you have to fight through all sorts of legal stuff if you want to go on disability, or fill out tons of confusing paperwork if you want assistance....but I have a cousin my age with kids who does nothing but have them...and she gets food, had a roof over her head before she tore it up...sometimes I can't help but be jealous. But I have my life. I have to concentrate on that.

Blessings,

Samantha

[Karen]

Hi, I shall call you Sam if you don't mind, as we've already got a Sami on the website....

I also had migraines that started in my teens .... I'm from the United Kingdom, so they started whe I was in Upper School or probably High School in the US ..... think that I was about 14...... I used to get a raging headache and had to lie on the floor .... if I moved, I would vomit or blackout.

After I had my two kids at 24 and 29, my migraines increased and I started to get the type with aura .... mainly jagged lines in front of the eyes and the feeling of not "being all there" or "spaced out" .... these were frightening at first and I did wonder what they were.

I also believe that stress isn't a good factor, when it comes to a SAH and believe you me, I've had my fair share....

I had palpitations pre-SAH, mainly when I was lying down to sleep, but didn't see the Doc about, as they seemed to come and go. However, since this SAH, my palpitations are a lot worse and they can come, when I'm feeling totally relaxed and I often wonder whether there are some heart related issues. My Doc has put me on a beta blocker and this seems to help with the migraines, palpitations and anxiety.

The blood from a SAH can take many months to disappear, but it does get better. I can understand how worried you must be, especially if they haven't found the cause of the bleed. However, a bleed that hasn't been caused by an aneurysm, normally has a very good recovery rate and there's been quite a few people on this message board that have experienced the same. That's not to say that the recovery is any different than a bleed from an aneurysm and you will need support to get through it.

Understandably, your healthcare is a lot different in the US to what we have in the UK and even though we moan about it, at least we don't have to worry about paying for it ..... my heart goes out to you .... stay on these message boards and talk to us ...... I'm still on painkillers for the headaches and I'm 2.6 years down the line, but it does get easier .... if lying flat doesn't work for you, then try propping yourself up and sleeping more upright and definetely get a "V" shaped pillow..... I still get a heck of a lot of pressure in my head when I wake in the morning, especially if I lie flat.... anything is worth trying and make sure that you drink enough fluid.

If you're feeling anxious or depressed, then see your Doc ..... time is a great healer and it will get better for you.....xx

[Holly]

Bless you, Samantha.

Yes we are very lucky to be here, and believe me I hear what you're saying about other people who can get benefits easily and other can't.

But, we are here for another day, and that we can be thankful for, eh? ha! Even though life can be extremely unfair at times, even crappy, but being a part of this site will be very useful to you. I have found it to be a great strength for me.

You are among friends here, so make use of the site if you need to moan, grumble or even scream, ha! We're all listening.....you take care,

toodle loo,

H xx

[Karen]

Holly, I totally agree and talking to others that know how you're feeling is price less ... I don't know how I would have coped without the support from other SAH'ers... xx

[Guest Samijoliz]

Greetings Karen, nice to meet you. It's fine to call me Samantha if you wish.

It's comforting to know that the blood does eventually disappear. Hopefully we can get down to what exactly caused it, so we can know how to treat it. And you are right about sleeping at an angle, I did that for a minute, my mom and I put my bed up on bricks, and I'm going to do that again this weekend. It did help, as I also have sinus problems.

I have about $50,000 dollars worth of medical debt that my insurance didn't cover. I had no idea it would be that much. But I'll get through it.

Today is overall a good day, the pain is minimal, it wasn't really there earlier, the reappearance of it is probably my body telling me it's time to rest soon. But I get off work in about an hour-and-a-half. So I'm doing well overall.

Holly, I appreciate your optimism. I'm so glad I found this site.

Blessings to you all,

Samantha

[Karen]

Well, I shall call you Samantha and it's lovely to meet you too!....

Snap, I also had sinus problems before the SAH and still do ..... but that can sometimes be caused by the pressure from the bleed/the artery that has been affected .... it's well worth mentioning it, to the Doc .... my bleed came from the right post communicating artery and I was having sinus type pain around my right eye ...

Well, try to stay positive and as upbeat as you possibly can, it definetly helps with things .... I know that it's not always possible, but it's always good to talk and a trouble shared etc....

[Louise]

Hi Samantha

And a warm welcome to the site.

I think my SAH was caused by stress, I was going through a lot of stress when it happened to me.

Take care

Louise.x

[Skippy]

Hi Samantha

Welcome to the site and to the family.

I really feel for you hun. True, we moan about the NHS system here in the UK but at least we have one and it's relatively hassle free. I really hope your new Doc can give you more help than the others.

I'm 16 months into my SAH and still have to take painkillers now and again and often wake up with the pressure in the head and vice like sensation at the back - I can imagine it takes a long time to reabsorb blood into the body - I had a 2cm blood clot around my aneurysm and it's taken for ages to reabsorb. It does get easier to cope with the further down the line you are but it is all scary at first.

Like the others have said - feel free to rant, rave, laugh, cry and scream. This site has been a Godsend to me and I don't know what I'd do without the fantastic friends I've made here.

Take care and stay on the site to talk to us.

Love Sami xxx (Great name eh!! )

[Janet]

Hi Samantha

Welcome can only echo what the others have already said and hope that your new Consultant can give you the answer you so desperately need.

Look forward to hearing more from you.

Janet x

[Guest Samijoliz]

Hi Everyone, how have your past few days been?

Thanks for the welcome, Louise, Wilkie, and Rossi. I really appreciate it.

It's been a rough week so far. Sometimes I feel like I've lost my life, since the stroke, a lot has changed. I've lost touch with people that I saw often before I got sick, I've had many fluctuations in my job, and to me it seems that my health has gotten worse, or at the very least, that it's taken more to maintain it. I don't know which it is yet. But at times I feel very lonely. I'm glad I found this site. I haven't often talked to people about what recovery from my SAH has been like, I get the impression that my friends and family don't really know how to approach me. And when I'm in pain, I know I'm not the nicest person.

Right now I'm just tired of the pain, tired of the struggle, and scared.

I woke up around midnight tuesday morning with the typical feeling in my head like someone whacked me with a baseball bat. My mom has the house rigged with a very loud alarm, and she sleeps lightly, so as much as I'd like to walk around the corner to the ER and not disturb her, I can't. I was only able to do that once, and that was because my stepdad was here, and he snores, so mom keeps earplugs in. I had to wake her up this time, and this was the second time in less than a week.

I think the ER doctors here are tired of me, because they say my CT scans show no change, yet I'm always in such pain. Sometimes I get a doctor that is sympathetic, but this past time I overheard the doctors talking about me in kind of a disdainful way, saying that my scans hadn't changed, and the one before that showed the same, and the one before that, and the one before that. I heard them saying this, and it really upset me. Here in the US, sometimes the treatment they give you is based on their opinion of how sick you are, or how much insurance they think you have. If you have none, unless you're on death's door, they give you painkillers and send you home. That's what they did to my dad because he was poor, and it ended up killing him.

It's been frustrating, because so far no one can explain why I'm in so much pain. Louise, I really do think that my stroke was stress-related. And apparently I'm not the only one who sees that this has taken such a toll on my life (my parents are noticing and they're stepping up to help, for which I'm so grateful). It's just that I feel cheated sometimes. I just want a few days in a row without pain...and some doctors who will listen to me. Well, I have an appointment with a new neurologist, I should see him next week. That's a blessing.

I was supposed to get my wisdom teeth pulled Friday, but since my ER visit, my mom wanted me to call my dentist to see if he could do it earlier. Because of my medical history and the fact that I went back to the ER, he got scared and asked for a release note. Here in the US everyone is lawsuit happy, so whenever a situation comes up in the medical field that has a risk like mine, there always has to be someone who puts his signature to paper to say I can do or go somewhere when it comes to medical treatment...so if I die, the person who ok'd it gets sued. It's very frustrating. I don't blame the dentist or my mom (though I was angry at first when he refused...the teeth add to the pain), but I can't be going through all this beaureaucratic red tape over two wisdom teeth. I know that it's abnormal for someone my age to have a stroke, but I still need medical care. Well, due to the fact that I'm just recently under good insurance, I don't have a primary care physician yet, and I haven't met my new neurologist. So I can't get any note.

I'm blessed, though. I have an appointment with a new dentist thursday, and hopefully he'll pull my teeth that day. I'm at the point where I'm willing to take the risks, even if it is my life, because I'm tired of wasting the weekends away sleeping off the pain, I'm tired of missing work and fearing for my job. But you just take it one day at a time, right?

My parents have changed a lot since they married 13 years ago. My mom has changed a lot since I got sick, and I know I have to change too. We've had a rocky relationship. When she and my dad divorced, she couldn't handle the pressure, and for years she abused me. She's changed, and I'm learning to trust her. My stepdad was an alcoholic when he married my mom...only she didn't know. We moved overseas with a man who we really didn't know, and a lot went wrong. But he's changed to. Mom and I both see it.

My mom told me today that when she retires in 3-5 years, the house we're living in will be left to me. It's paid off, so it'll only cost me about $500 to live here each month. That's definitely less than I'd be paying for an apartment around here. I may buy it from them, if they'll let me. They've also offered to let me use the second car (Bill bought mom a new one for Christmas) when I have errands to run. More than anything, I just want to be able to go to my old church again. In a few weeks I'll be able to do that. It helps to have rich parents who are worried about you, I guess. I'm so grateful, but also a little amused at the two of them. I'm glad they're making their marriage work, it's taken a long time. I'm also glad that my mom sees that this is serious. I used to think that she didn't care much, but I see that's not the case now. So I'm trying to open up more, but it's hard.

Sometimes I feel so ashamed, because of the path my life has led me down. It's not only the stroke, it's all of the stuff that came before it. I kind of feel like the stroke was the breakdown I always feared I'd have. I suffer from depression too, and the SAH has complicated that. I'm on an asprin regimen, and due to that, I have to be cleared before I can take any antidepressants. I have what's called dysthymia, which is a long-term mild depression. I've suffered from it for about 20 years, and every so often (I've never really timed it) it turns into major depression which lasts a few months. I'd just like to get to a point where everything was stable, where I'd be able to be creative again, where I'd have a life again.

But at least for now, I won't have to worry about the roof over my head. That helps. At least my employers seem to understand. That helps to. Now to get my bankruptcy done and get to my doctors.

Thanks for listening. I hope that you all are doing alright. Be blessed.

-Samantha

[Blondie]

Hi Samantha - welcome to the site, it's great, as you can no doubt already see

So sorry to hear you've had such a rough time. You get extra sympathy from me today as my teeth are sore - I am due to have 2 wisdom teeth removed in the future as well.

Like you and Louise, I also think stress was a factor in my SAH. Good luck with your new neuro, I hope you get the help you need. Let us know how you get on.

Take care,

Blondie