painful pulsing pain! Please help...

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painful pulsing pain! Please help...

Postby AlishaDiane » Wed Jan 11, 2012 1:44 pm

I am experiencing painful pulsing pain radiating from my lower spine to the base of my skull like a heartbeat... Not all the time, it comes and goes... but when it happens it is almost unbearable. I just try to slow my breathing and wait for the storm to pass. Have you ever experienced anything like this?
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Re: painful pulsing pain! Please help...

Postby gunflint » Wed Jan 11, 2012 5:24 pm

What meds are you on?
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Re: painful pulsing pain! Please help...

Postby AlishaDiane » Wed Jan 11, 2012 7:16 pm

Effexor 75mg
Restoril 30 mg
Synthroid 150mcg
Metoprolol ER 50mg
Celexa 20mg
At times you take the simplest things in life for granted until you no longer have them. Cherish every moment of everyday for you never know when you can't.
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Re: painful pulsing pain! Please help...

Postby AlishaDiane » Wed Jan 11, 2012 7:21 pm

It happens mostly when I change positions suddenly... like standing to sitting or lying down. The pulses of pain gets so bad that it makes my back spasm with each pulse. Lasts usually only 30 seconds or so, but really hurts.
At times you take the simplest things in life for granted until you no longer have them. Cherish every moment of everyday for you never know when you can't.
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Location: Central Mississippi

Re: painful pulsing pain! Please help...

Postby pseudotumor » Wed Jan 11, 2012 8:58 pm

I've had this, and due to the changing position part, I would guess it's a CSF flow/pressure issue like mine. For me the fix was getting a lumbar puncture to immediately drain some of it followed by being on diuretics for a while. I haven't experienced this since my PFD in august.
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Re: painful pulsing pain! Please help...

Postby AlishaDiane » Thu Jan 12, 2012 1:27 am

Yes, I had severe trouble with the csf leak after surgery and they performed a lumbar puncture to "fix" the problem... two days later I could barely stand upright or walk the pain was so severe. I had developed a spinal fluid leak and had to have a blood patch. But, surely I can't still have a csf leak now... my surgery was in 2009. Can I?
At times you take the simplest things in life for granted until you no longer have them. Cherish every moment of everyday for you never know when you can't.
AlishaDiane
 
Posts: 26
Joined: Fri Dec 26, 2008 11:31 am
Location: Central Mississippi

Re: painful pulsing pain! Please help...

Postby zenkeeper » Thu Jan 12, 2012 9:23 am

I get a modified version of this. I do not feel it going down to my lumbar spine but get it in my base of skull /head and sometimes travels into my neck area. I had a leak after my surgery 1.5 yrs. ago and after a CT Mylogram for which I had a blood patch which took ALL my symptoms away temporarily.

Now I get these painful pressure pulsations when I stand from a seated position but not standing from a lying position. I have them off and on and they get worse after lots of activity or exercise. My NS is SURE I do not still have a leak..I do not believe him. Just a few days a go I got what felt like a CSF leak headache that lasted for a couple of days - only thing that helped was lying down.

I think you could still have a small leak anytime after surgery if it was never completly fixed/healed. All you need is a small area of your patch (assuming you had PFD?) to be compromised. My patch has a small "bubble" in it....Anyway, for me a second opinion with a CM expert is the path I have chosen because my NS thinks everything is perfect, yet I have different and worse symptoms then before the surgery - the type of pain you describe is one of those symptoms.

I sometimes find upping my sodium and fluid intake helps and also a soft cervical collar worn backwards to support more of the back of the head. I also get those Thermacare heat wraps but the kind for the lower back and wrap it gently around my neck - this gives me some gentle support and long lasting heat. Sounds a bit wierd but it helps take the edge off. Hope you find some answers. ZK
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Re: painful pulsing pain! Please help...

Postby gunflint » Thu Jan 12, 2012 10:32 am

AlishaDiane wrote:It happens mostly when I change positions suddenly... like standing to sitting or lying down. The pulses of pain gets so bad that it makes my back spasm with each pulse. Lasts usually only 30 seconds or so, but really hurts.


I have been having the exact same thing for a few years. It's worse early in the day and later in the evening. In other words when my meds have worn off. I'm considering printing this thread and showing to my GP.
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Re: painful pulsing pain! Please help...

Postby tennesseewalker » Thu Jan 19, 2012 9:45 am

I have a spinal cord stimulator, and the stim signal also pulses with my heartbeat. Hard to get used to, but well worth the effort.

Have you tried changing positions ? Is it worse when you breathe in or out ? I ask because these things affect my stim signal.

Oh yeah, my PFD was in 1996. Symptoms stable until 2006 when I was diagnosed with RSD.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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