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AVM Survivors Network

Scared for my life

#1

Woke up this morning with severe headache, took the usual painkillers to no effect. Done my bp which was getting on the hich side 140/90 even though i take medication to keep it down. So phoned 111, who e-mail my doctors surgery to suggest I get seen within an hour. So no one comes and I start getting worse, bp is now 160/100, with irregular heart beat. So I phone 111 again as I start having a seizure, they say they are sending an ambulance. Then I get a phone call from ambulance control asking my wife if I have stopped shaking etc. Then suggest my doctor should deal with it, and they were going to contact my doctor. All this was 6 hours ago and no one has been. I still have severe headache and feel very anxious. I live out in the countryside and can’t drive. I now feel even more anxious about my condition than ever…

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#2

Call a neighbor or somebody and get a drive to the hospital!

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#3

The headaches are so frightening. I’m no expert, but when my avm ruptured the headache was unbearable and I had some other symptoms. In my case my legs were wobbly and I was dizzy.
Keep us posted. I hope it ends up being a false alarm, but definitely get it checked out

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#4

Mickeboy, hope you’re doing better. I had a year or so ago tremendous headaches so bad that I thought it was another bleed. But after MRI/CT scan, the doc suggested they were microbleeds possibly:

Not saying that’s what you have/had but that is a thing. Definitely follow up with your doctor!

#5

Mick,

You’re definitely having a hell of a time!

I agree with Mike: if you’ve got a neighbour who will help, definitely enlist help next time. Otherwise if I started going into a fit, I’d be getting someone dialling 999 not 111.

I am astounded, if that helps.

Very best wishes,

Richard

#6

I think just given the scenario you described, there were a multitude of problems on all sides (yours and theirs). I know the great majority of people prefer to be polite and patient. BUT sometimes the need to raise hell arises. From your description, that time was when you first called for help. Never wait for someone to help, get someone to help you now. As for the parties that you called for help that didn’t even try to help you, they should be now looking for new work. I don’t want to sound to bossy, but hey it’s your life, protect it.

#7

Mick: I totally agree with LESR! Don’t wait for help to eventually arrive. Enlist somebody, a neighbor, a friend, or even the Police to help you as soon as you need it. I’m so sorry you had to go through this awful ordeal alone. My best to you.

Sharon D…

#8

Thanks for all your replies 111 actually phoned back and sent an ambulance, which arrived within 15 minutes. I am feeling a bit better and was suffering a failed weening. I am taking 500mg of phenytoin and doctors wanting to get me on lamotrigine, which they were doing by starting the new one, whilst still taking the phenytoin. Then upping one and downing the other. But it seems it didn’t work and gave me a seizure, high and low blood pressure, irregular heart beat and even more severe headaches. Thanks for all your support and next time it is definitly 999!!!

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#9

I am so glad you are doing better and that the cause was determined and apparently fixable! I just wanted to mention for the record that I had a sort-of similar thing happen a few weeks after I went home from the hospital after the brain bleed and embolization.

What happened with me, I developed a headache, really fast heart rate, and alarmingly high blood pressure, like 190/110 in spite of fairly aggressive blood pressure medication. I got a neighbor to drive me to the hospital since my husband wasn’t home, and I got the fast track admitting, believe me! Imaging showed no bleeding and they got my BP down and I was admitted overnight.

They did find a cause for my symptoms - I was having a thyroid storm. About six months before my stroke, I’d had a complete thyroidectomy (benign, but due to previous cancer radiation it was not pretty). I was still in the course of getting my Synthroid doses calibrated when I was hospitalized for a month after the stroke. In fact, about a week before the stroke, I tested quite low. (And by “low” I mean that the dose was too low, not the TSH test, which is high if you’re low and vice-versa.)

While I was hospitalized after the stroke, I was getting my thyroid medication every morning and I was tested once or twice to make sure I remained in range. But they were actually pretty inconsistent about when and how I got the medication. At home, I take it by itself first thing in the morning, and then wait an hour or two before I get up and have breakfast and my heart medication. But in the hospital, they’d have me take it with other medications, including the antacid they’d make everyone take even though I absolutely didn’t need it, and sometimes it would be late and I’d have to eat right away before physical therapy started.

Back at home, I went back to my normal way of taking it, alone and without food. That apparently increased the absorption rate quite dramatically and it got high enough that I became symptomatic.

Easy fix, but boy was that a scary evening when I thought I was having another stroke.