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Autonomic Dysreflexia Headaches


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#1 Apparelyzed

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Posted 28 July 2011 - 06:19 PM

Odd one this ...

... So, since April, I've been having Autonomic Headaches, with no apparent causes.

Bladder and bowel are fine, skin is ok, toenails are ok.

The only symptom I'm getting is a pounding headache and stiff neck.

The headache starts around 4.00am, lasts all day, and part of the following day. I'm taking Coproxamol to control the headache, but they're probably just masking the symptoms.

When I'm in my chair, the slightest movement will trigger the headaches.

Oddly, there is no sweating, goosebumps or flushing above my level of injury.

The headaches have no apparent pattern to them, and I've never had these symptoms before.

There's not much point in going to the spinal unit, as unless I'm actually having the headaches, I don't see how they're going to diagnose the cause.

So, any ideas?

Simon :)

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#2 Trinity

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Posted 28 July 2011 - 06:46 PM

my first thought is are you sure it's AD, especially if you are not getting your normal symptoms?
If you are getting the headache and a stiff neck maybe it's actually a problem with your neck or maybe it's actually a banging headache? Neck problems can cause some seriously bad headaches, although if you get the BP rise then clearly I am wrong!

As for the causes, it's clearly not position or posture, especially if it happens in bed as well as when you're up (Assuming you are in bed at 4am..) you have ruled out all the main causes, maybe get your bladder and kidneys scanned to make doubly sure there are no stones, maybe even you gall bladder.

My bet is still that the problem is with your neck rather than something below your injury

And please just give your SIU a call to ask their opinion, they are the experts and may actually be able to offer some decent suggestions.

(as for the co-prox....tut tut tut! Have you tried an anti-inflammatory alongside it? next time take some ibuprofen, or if you can get it, some diclofenac (Karen maybe able to "borrow" some!) would be even better!)

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#3 Valo

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Posted 28 July 2011 - 06:59 PM

If the usual AD suspects are checking out ok, then it's an interesting one. When you say the slightest movement sets it off is that pushing yourself around or moving side to side when pressure relieving or a mixture of everything? Does touching your stiff neck set it off/make it worse? Do you have any tender spots that intensify the AD headache (when I had a kidney stone I was fine both in bed and sitting up but if I just touched my right side I would go instantly into AD.)

I would also want to get a Kidney/Bladder ultrasound/xray just to make sure everything is ok down there.

I would contact the spinal unit if it's been going on since April for no obvious reason as living with that would drive me insane!

Edited by Valo, 28 July 2011 - 07:08 PM.


#4 Apparelyzed

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Posted 28 July 2011 - 07:20 PM

Yeah, my though was my neck, as I noticed some slight pain around C7. The last couple of times, when putting my chin on my chest, it triggers spasms in my abdomen. Also, when going down a slight drop in my chair, I get a bit of pain in that area of the neck.

The headache feels the same as an autonomic headach, really throbbing, head exploding type.

There is no tenderness around the abdomen when the headaches happen.

I did have a slight temperature this morning, around 38c, not sure what it is now.

I'll take a rummage through the drug cabinet, see what I can find! :crazy:

Simon

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#5 Trinity

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Posted 28 July 2011 - 07:38 PM

I wouldn't read too much into the temperature unless it's a common occurrence as it's been really quite hot and muggy overnight and you know as well as anyone that your body doesn't deal so well with the heat!

Maybe you need to ask for a scan of your neck? could be syrinx, arthritis, disk problem, trapped nerve, any of these could cause a headache. Can you measure your BP next time?

Whatever it is you are too important to be ignoring this!
x

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#6 jules

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Posted 28 July 2011 - 07:51 PM

Simon,you have got a bacolfen pump haven't you? The reason I ask is I found that an AD headache and a low csf pressure headache are almost the same, it could be that you have had a csf leak around the pump site in the intrathecal space. low csf pressure will get worse the longer you are sat up, therefore it coming on the same time of day could be linked to how long you have been sat up, when the pressure gets low enough then it will bring on the headache.

Just a thought.

Jules

#7 Valo

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Posted 28 July 2011 - 07:57 PM

After reading you saying you get pain dropping in off kerbs at C7, I was also thinking that it could be a trapped nerve/disk problem. The constant AD headaches need to get looked at as that's not healthy feeling like that constantly.

I agree with Trinity you need to get this investigated at your spinal unit ASAP.

#8 Apparelyzed

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Posted 28 July 2011 - 07:59 PM

Hi Jules,

A CSF headache was my first thought, as it's very similar, however, I discounted it as I couldn't find any noticable swelling around the pump or scar site.

Also, the fact that the headache only lasts for 48 hours lead me away from this thought.

The headache is pretty constant once sat up, and does not reduce when getting back into bed.

Simon

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#9 curbyi

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Posted 28 July 2011 - 08:11 PM

You know the drill Simon get yourself checked out ASAP.
If it don't make sense I blame the voice typing software misunderstanding me not my failure to listen in English classes!

#10 Trinity

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Posted 28 July 2011 - 08:28 PM

View Postcurbyi, on 28 July 2011 - 08:11 PM, said:

You know the drill Simon get yourself checked out ASAP.

I completely agree, if anyone else was posting this he would be thinking "go to your siu!" Unfortunately it's not as easy to practice what you (or other on your website) to preach

Maybe if we nag him to death he'll actually do something pro-active about it, to be fair Simon, if it has been going on since April it's not going to go away suddenly, do something about it!

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#11 greybeard

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Posted 28 July 2011 - 10:28 PM

THREE MONTHS and you are only just getting worried about it? Blimey. I thought I was stubborn!

Be a good lad, and do what Nurse Trin tells you - or we'll send the boys round. :emoticon-0165-muscle:

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#12 pistol_pete

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Posted 29 July 2011 - 02:27 AM

Heres my nag.

Go to the bloody doctor Simon, get a full check up, blood tests , kidney scan.
The headaches are happening for a reason.
Why are you still sitting there, I said go to the doctor.



:nono:




Go on!!!!.







Now!!!!!!!!!
Todays greatest labour saving device is tomorrow
My spine is all wrong but my backbone is strong.

#13 Apparelyzed

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Posted 29 July 2011 - 07:10 AM

I know, I know!

I guess the reason I haven't had it checked out is because I'm trying to pin down a pattern as to when it happens.

I woke up this morning, and the headaches gone!

It's happened 5 times now, and as it only lasts no longer than 48hrs, I tend to forget about it afterwards.

I guess I'll make a call.

Simon :)

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#14 Edinburgh Colin

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Posted 29 July 2011 - 09:36 AM

Good Call Simon,

We spend enough time nagging others about getting medical help, why should you be immune.

Check it out, it might be nothing.

EC


Impossible only describes a problem that needs viewed from a different perspective

#15 Smileyblue

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Posted 29 July 2011 - 09:57 AM

Better safe than sorry.. :hug:
What's important is not what happens to us, but how we react to what happens to us..

God gave us two ends, one to think with, n one to sit on.. Success depends on which one u use.. Heads u win, tails u lose..

#16 Jeanette

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Posted 03 August 2011 - 05:40 PM

Simon,
Did you go to the doctor?

Jeanette
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because "God only Gives us what He knows we can handle"

#17 my-sister

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Posted 04 August 2011 - 12:56 AM

perhaps temporomandibular joint problems? are you clenching your teeth in your sleep? or trigeminal nerves are being bothered in some way? both cause radiating pain and spasm in the head, neck. and if you are waking up at 4a.m. with the head ache, it could be a possibility that you are clenching. good luck in finding out the cause. hope you feel better soon!




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