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Hi I'm Shelli - SAH on 12-6-1995 - I'm 40 now


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Hello all,

First, let me say I wish I would have thought to look for this a long time ago. I had a SAH when my daughter was born on 12-6-95, by C-Section. I was 24 and healthy when it happened. The reason it happened was because I had HELLP syndrome. I had prenatal care, my whole pregnancy and had just had the last weekly checkup before going to the bi-weekly checkups. She was born 5 weeks early and had no problems. I spent two weeks in the hospital, one week in ICU on a morphine pump and also had meningitis because of it. I recovered pretty quickly.

My main goal in coming to this site is finding people who has lived with the consequences as long as I have to see what their experiences have been.

Thanks,

Shelli

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Hey Shelli

I think you may well be the one on here that had their SAH before any other member - I'm sure someone will correct me if I'm wrong.

It would be helpful to others if you could give us more information on how you coped initially after your bleed and how you've improved etc - I had mine in 2006 so a mere newbie compared to you. It must have been quite shocking to have a bleed so young, but you seem (from your post) to be doing OK now.

Look forward to hearing more from you.

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Hi Shelli and welcome! :-D

This website is relatively new (established in July 2006) and came about after my own SAH in 2005, when I was looking for information and support. Therefore, most of our members are post 2005 in terms of recovery, a couple of members are earlier, but probably not as far down the line, as yourself.

I have never heard of Hellp Syndrome, so it's been interesting to read about it and something else to learn .... but, I'm sorry to hear that you had to go through this with the birth of your little girl and hope that she's doing fine now.

Did you have an aneurysm or non-aneurysm bleed? xx

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I think the worst thing I dealt with at first , besides the headaches, was the depression that came from having a new baby and feeling like I couldn't take care of her. I didn't have much time to worry about me, I had to get back on birth control and go back to work, which I did, part time as a programmer, 2 months after she was born. I didn't have a very understanding or responsible ex-husband. I think I was back to work, full time after 3 months. Within 6 months, I was off all medications, except birth control pills. That's when I had the first follow up CT scan, and still had swelling. I had another CT scan at 18 months, and still had swelling. The only problem I have still never recuperated from, is the fatigue.

BUT....

The reason I am here, is not so good..

I had have a lot of good years. I have had my own businesses, and even had another job concurrent with running one of those businesses. Then in 2007, I started getting headaches. They weren't everyday at first. But now, they are are everyday, at the same time of the day. They start around 3 o'clock in the afternoon. I started taking Topamax last summer, and they have controlled the headaches, and I stopped worrying about them, because I thought it was just from stress, because I lost my store and my job. But now, I am virtually stress free, so a few weeks ago, I thought I should be able to stop taking the Topamax. Well, I didn't take the night pill, and then didn't take the pill in the morning and then, by 3 o'clock that afternoon, like clockwork, there it was and it was bad. So, needless to say, I dug out the giant file , that I have already shown to my GP, with a letter from the neurologist, who said I shouldn't need anything unless I start having headaches again. So, I'm planning on going to get setup for a MRI or a CT scan and get an appointment with the neurologist I went to back in 1995-1997.

I really didn't want to get on here and say hey, this is what you have to look forward to. I took the birth control pill YAZ for 3 months before these migraines started, so my hope is that they have nothing to do with the SAH(a far fetched hope). That's actually why I came looking for a support group, trying to find somebody who maybe had been through a good recovery and good years, then had headaches start again.

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They were non-aneurysm bleeds.

I don't remember much about the day she(Kirstin) was born. We went in at 5:30 that morning because I was having burning pains, in what I later found out was my liver(who knows it's your liver:shock:). I go in and lay down and they hook me up and take my BP, and I remember seeing the systolic number was 225 and I passed out. I was unconscious the rest of the day until they took her by Cesarean that night at 8:40, when I told(or thought,I'm not sure) them they better hurry up or my head was going to explode because every time my heart beat, my head jerked. Or at least that is what it felt like.

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Hi Shelli.

You are, as far as I know,the senior SAH survivor on this site.(Dubious honour).

Much of what you say resonates with me , especially the pain in- sync with the heartbeat. That's exactly how I remember it.

I am only seven years down the line, but am also experiencing a resurgence of headaches and fatigue that I thought were in the past.

My Ophthalmic Surgeon says the headaches are related to Third Nerve Palsy and my GP says the fatigue is due to TNP and lifestyle.

Your point about recovering, then sliding back into symptoms, is echoed in my experience.

I do think that when things are going well in your life (my life) that the symptoms recede into the background.

I had a couple of these years some- where in the distant past.

With the new pressures, of redundancy, loss of pension, increased scrutiny from above, the symptoms are returning.(This could be stress).

I think you're right to seek an MRI or CT scan to rule out any physical reason for re-occurrence.

The Neurologists are very clever at repairing the Human machine , but less adept at resolving fatigue/headache /depression or anxiety related issues.

These areas may be the domain of other disciplines.

Welcome to BTG Shelli, I hope you find what you seek, from all the accumulated experience on this site.

My guess, is that we will learn more from you.

All the best.

Bill B. x

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Hi Shelli, welcome to BTG!

I had a non-aneurysm bleed in Nov last year. Im sorry to hear you have recurring headaches again. I was having headaches leading up to my head explosion, almost every day but not at the same time each day. Once my head blew up the headaches stopped. Now I get them sometimes but not like before. They were building pressure like a volcano.

Its my understanding that having another non-aneurysm bleed is very unlikely however, not impossible. You need to havemthe tests to give yourself some relief from worrying about it. No one wants to go through a SAH the first time and certainly not again.

Bill, what is TNP? Sorry, I'm not good with acronyms. I want to know everything about fatigue because it seems to be the biggest problem I struggle with now at almost 8 months post NASAH. We had to leave the Santa Monica pier after supper so I could nap and then I dragged myself back out for a couple of hours but Peter and I were back in our hotel room shortly after 9pm. The crowds of people, the lights, the noise, it all brings on the fatigue. Sore limbs, sore back, sooooo sleepy.

Shelli, I'm very interested in everything you have to say. You've accomplished a lot since your NASAH including raising your child. Would have done anything differently that you think may have helped with the fatigue?

Good luck with your upcoming medical appointments. I hope they are just headaches and nothing more serious.

Sandi K.

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HI shelli welcome to btg hope you get everything you need from here.I still get headaches and dizzyness went to the drs Friday and told them I want an mri scan but I know I am being silly because I have had them on and off for the last 8yrs. However I gave my drs a lecture on how we get no aftercare and they need to start doing it. They need to be more helpful.Look forward to chatting sometime. Jess.xxx

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@Bill,

I spent 3 days in the hospital before they even knew what was wrong. Then one the third day, I had crossed eyes. I've never heard a name for the Third Nerve Palsy, but when I looked it up after you mentioned it, that is probably what I had/have. I also lost some peripheral vision. All of which was regain within 3 months. I had little to no information when this happened to me. What I was told was I should have died. That was nice to hear. :shock: The only thing I can really remember reading about it then was that the survival rate was 5%. I just read it is much improved, now something around 40-50%. The drugs I was given in ICU were to help reabsorb the blood back into my system and antibiotics for the meningitis.

@Sandi

The fatigue kept getting better and better. It seems like I remember it being the worst about the first 6 months for me. But I've never gotten back to the way I was before. I've always told people that this aged me 20 years. When we go out, my family get upset with me that I get exhausted after we do just a couple of things. It's just too bad. That's just the way it is. And I don't notice it so much now, but I used to notice, when I would get tired, there would come a definite time of the day when I just could not think "straight" anymore. Literally, my mental capacities would shut down when I would get exhausted.

Thanks for listening to me,

Shelli

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Hi Shelli.

When you had your episode there was little, or no, information available to access as the www was in it's infancy.

Survival rates have dramatically improved since those days, as we are all here to testify.

My first introduction to SAH was when my 25 yr old sister dropped, face down, into her cornflakes at breakfast in July 1979.

She was rushed to Derby hospital,where she was given a Craniotomy and clipping procedure that she never recovered from.

There was no information or follow up from the hospital, just a black plastic bag with her belongings.

My whole family was damaged by this episode and the effects, still, resonate with all my immediate family.

The common theme, that keeps on surfacing on this site, is the lack of follow up and understanding of the long term effects of SAH.

Minan was right when she said , (her husband said) clinicians should scour the chat rooms to gain a better understanding of the real long term effects of

SAH.

I am in no doubt that fatigue is related stress. My job is under threat and all the symptoms of early recovery are returning pro- rata.

That feeling of shutting down, that you describe, is what I call "Petty- Mal", a distancing from the immediate surroundings and an indicator that sleep is

necessary.

I am giving a talk on Autism to an invited audience tomorrow, and I feel very positive and energized at the moment.

Following this, (well paid ) event, I am out of contract until September, and just know, that tomorrow night, the symptoms will descend upon me

as sure as night follows day. Your a sixteen year and I'm a seven year survivor, and I don't suppose anything is going to improve from here on in. It's

just a matter of managing and accepting all the realities of our new lives.

Keep talking Shelli, we're all listening.

Bill B. x

PS. Sandi....TNP=Third Nerve Palsy.

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Hi Momo.

The genetic link is denied in the UK.

In Norway,Denmark and Sweden scans are offered, in all cases of SAH, to all members of the immediate family, as far as I know.

My cousin, ( Senior consultant surgeon at Warrington Hospital) had all his family screened on receiving news of my SAH.

(All clear, thank whoever is in charge).

The only thing preventing this option being made available to UK citizens, is cost.

There is,undoubtedly,a genetic link.

Breast cancer screening was in the same position as SAH screening fifteen years ago, until public pressure forced the government's hand.

Maybe the survey, just completed, will begin the necessary head of steam required to elevate SAH to automatic screening.

Don't hold your breath!

There aren't enough of us.

It is vastly cheaper to repair the few victims, than screen the wider population.

My sister was a victim of technology.

We, and our families, are victims of expedient, pragmatic logic.

It's just a case numbers.

Sorry, I'm ranting again!

But you know, I'm right!

Bill B.x

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Shelli.

My apologies .

I've just realized, I've said all that stuff on your introduction page. Very bad form!

You mention the tiredness. Well so say all of us!

The only thing I never tire of, is complaining about the lack understanding of these conditions.

Once again, sorry for steaming in, but it's a real help, to let fly every now and then.

All the best,

Bill B. x

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Bill,

Sorry to hear that about your sister. She was the same as as me really. I was only 3 months from 25, but I had an obvious reason. Did your family not find out what hers was?

I'm sorry I have not responded sooner, and don't worry about saying this on my introduction page unless it has been moved and I need to go there. :-D I haven't been on because I had one of my episodes. Thursday I took my mother-in-law, Rosalie to her arthritis doctors appointment in Abilene,Texas. I shouldn't have because I awoke feeling like I had been beaten, but I had already told her I would, so I went. It is an hours drive and we went early to do some shopping. Anyway, it was a 7 hour trip, and I have pretty much been asleep since.

Symptoms like this also started in 2007, and along with the headaches and has gotten progressively worse. My GP claims this is Fibromyalgia that probably came from the Mononucleosis that I don't remember ever having.

This was my fault this time. Rosalie ask me if I felt like going and I should have told her the truth. Since I had already told her I would go, and I don't really want her to know how bad I feel, I sucked it up, and it cost me.

Shelli

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Hi Shelli.

Yes, we were(my family) told what caused my sister's SAH.

They said it was the result of the spinal- cyst that she was born with.

We believed this, until I had my SAH.

I now know that aneurysms are hereditary and families should be screened as a matter of course.

I have read -up on the "Hellp" condition, and you are very lucky to be alive!

You are doing too much for other people. I know it's what we all do, but you need to heed the signs of your own body.

I spent eighteen months looking after my Dad with deteriorating Alzheimer's disease, and that nearly finished me off.

I now care for my Mother, who berates me with her skin,bladder,joint,sleep,balance,vision, hearing, and neighbour problems, whilst,all the time, I am seeing double and and feeling monumentally tired.

But, hey-ho, as the song says, "No Charge".

You couldn't tell Rosalie the truth, just the same as I can't tell my Mum to shut- up moaning, because we love them, and that makes us just carry on ,

whatever the cost to ourselves.

Keep on sucking it up Shelli,

I'm right there with you!

All the best.

Bill B. x

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