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AVM Survivors Network

At the end of my tether

Last Wednesday I started experiencing worst than normal symptoms, by Thursday they were that bad, after a call to the doctor was taken to hospital. After the usual CT scan and you haven’t suffered a bleed, was free to go home. Since then I have had severe head aches, Nausea, Dizziness, tiredness, can hear the blood rushing in my head, can’t lay down or stand up, very sensitive to light, head feels heavy and feel more confused than normal. After phoning the doctor to explain, was told “your AVM is not causing your head ache” but won’t tell me what is, or seem to want to go any further in helping me. I have been stuck in doors for 5 days unable to do anything and don’t know where else to turn for help…

I’m so sorry to hear this. It seems like you have been put through the wringer.
All I can say is that after my bleed I was feeling ok, not great but ok. After the angiogram and I knew I had an avm, the headaches and weird sensations increased. I really felt that they were avm related.
I wish I had some good insight for you, but all I’ve got is follow your gut, you know how you feel. That and when you do have a bleed there is no mistaking it. Mine was small and felt like nothing I’ve ever experienced before ( and I’ve had migraines for thirty years).
When are you scheduled for treatment. The wait is unbearably frightening

Hey Mickeboy,
If it’s any consolation (and I know its NOT) those symptoms are my ‘normal’. My symptoms fluctuate SO BADLY. Some days I’m lucky enough to only have a couple of symptoms and some days the meds work ok. But some days, just yuck, I got the whole lot and nothing works. My wife has hit the panic button on a couple of occasions and called an ambulance, we go to the hospital have all the scans and test and get told to go home “We can’t find anything…the scans look fine …it’s not your head” Ohh, yes it is. Or get my favourite line “There’s nothing wrong, it’s all in your head…” Well, tell be the damn obvious why don’t you. But they mean imaginary, if my imagination worked that well I should be able to image it all away.

I believe that they are of the thinking that we go ‘PANIC’ with every headache we get, but we don’t. For me things have got to be chronic bad before I’ll even go see a dr, so for me to turn up at a hospital, I am in absolute bloody agony. But they don’t seem to comprehend this. It seems that the patient can be symptomatic but if the scan images are clear, they have very little in the way of treatment options.

I will say at one such hospital visit they did place me on a drip saying that often it can be a matter of dehydration. It didn’t help I must admit and they then decided it probably wasn’t a dehydration issue “So just go home and rest”. REST? What do you think I’ve been doing? Training for a marathon or something?? My balance has been such a mess that I’m lucky to be able to stand upright and their best advice is to rest??? It really can be SO frustrating at times and ten for them to say ‘there’s nothing wrong’ just adds to the frustration. I have actually told one of them ‘well, if there’s nothing wrong then here you have the headache’ but none of them seem at all willing to take it for me, but then I certainly don’t want it either.

We can only manage the best way we can. If that’s by keeping yourself hydrated, do it. If that’s with painkillers, take them. If that’s with sleeping tablets, then take them. But within their recommended dosages and don’t be mixing meds, that’s never a good idea.
Please know that for many of us, we know just how bad it can get and it’s never good.

Merl from the Moderator Support Team

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Hey Mickeyboy,

I completely understand and from my experience, it’s the small things that seem unbelievable that have helped me. I’ve had the exact same thing happen to me a couple times and at first I rushed myself to the hospital thinking it was a bleed cause I just felt so rotten. After the redundant CT scan and the same old excuses with the advice that I needed rest, I was sent packing.

After laying in bed for a week or so, I noticed that I felt better after standing up for long periods of time, even though at first that was one of the last things I wanted to do. I then started sleeping in an upright position and my migraines slowly started getting better.

I guess what I’m trying to say, is that I advise you to cling onto the small things that make you happy or give you some sense of relief, and maximise these things to the best of your abilities. I have absolutely no idea why sleeping upright helped me at that time and yes it was wretched to sleep like that with a migraine, but I just went with what my gut felt was right. I advise you to do the same, even if it’s something very small.

Good luck!
Peter

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Currently in hospital with possible Intracranial hypertension, after finally getting to see a doctor who knows what they are talking about. Awaiting an MRI and possibly a Lumbar puncture…

Mick,

Let us know how you get on. I’m glad someone is thinking intracranial hypertension because I guess it might be a cause. Your gamma knife is going to be the long haul, so to find something like IH could really help get into a better space.

Still crossing fingers for you,

Richard

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