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Please Read!!!! CSF leak more and more likely

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Migraine Headache
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Posted 3/5/2009 6:25 PM (GMT 0)
I went to Georgetown to get a second opinion on my CSF leak diagnosis. For all those who don't know my symptoms started out as tingling and numbness in face and arms 4 months ago with accompanied dizziness. I new something was wrong but had no idea what. Most of the doctors I went to told me stress could do this. Okay I thought they are the doctors they should now what they are talking about. Well I guess this newest finding proves they have no clue what they are talking about. Since this incident I have had constant head pressure except while sleeping. It starts as soon as I get up and lasts throughout the day. The only thing that helps is loads of caffeine. No painkillers, muscle relaxers, migraine medication nada. So after meeting with this latest doctor at Georgetown he was unconvinced that this was anything but a tension headache but told me he would give my MRI's to a radiologist team. Well i got a call today that they found engorgement of nerves in my cervical spine which again is more evidence of a csf leak. Again my headaches are nopt debilitating just extremely frustrating. I have constant pressure at the base of my skull and sides of head. It has also caused some tightness in my jaw. Please I urge all of you that have had a constant headache or head pressure(there are a lot of you) please do more research on csf leaks. I guarantee this is what many of you have. I was lucky to have a neurologist who was smart enough and open enough to look for this diagnoses. I didnt even believe him when he first told me. The doctors reccomendation now is to get an epidural blood patch. Here are twogood sites for you all to research more on this starting with a forum like this one with loads of people explaining there symptoms. Again these headaches can vary but are usually made worse by upright position. But not always. Here are the sites. Please look at these and inform your neurologist about this not so rare condition. Thanks for reading and good luck!

http://brain.hastypastry.net/forums/forumdisplay.php?f=126

http://jama.ama-assn.org/cgi/content/full/295/19/2286
Posted 3/6/2009 7:15 AM (GMT 0)
Cheers mate, but what about for those of us with inadequate or no insurance?

How am I gonna get to the neurologist, get the dx of of CSF leak (if that's what I have), and then the epidural blood patch..?

I thought I would also mention that my head pressure tends to get worse when lying down, at least most of the time; caffeine and other stimulants make it worse, too.

Thanks so much for keeping us posted!

lemme know,

Batman

Posted 3/6/2009 11:11 AM (GMT 0)
There have been cases of people getting worse while lying down but caffeine pretty much works for everyone although sometimes nothing works. When i say caffeine i mean like 3 shots of expresso all at once. For me it doesn't kick in right away pressure will be reduced after a couple hours. Batman, have you ever tried a drug called amytriptiline? Im not sure how expensive it would be without insurance but it is usually very succesful with these types of pressure headaches. Im on it and while it doesn't help my head it allows me to keep my mind of the pain and not get frustrated and anxious. I think it would help you.
Posted 3/7/2009 8:03 AM (GMT 0)

Rooster427 said...
There have been cases of people getting worse while lying down but caffeine pretty much works for everyone although sometimes nothing works. When i say caffeine i mean like 3 shots of expresso all at once. For me it doesn't kick in right away pressure will be reduced after a couple hours. Batman, have you ever tried a drug called amytriptiline? Im not sure how expensive it would be without insurance but it is usually very succesful with these types of pressure headaches. Im on it and while it doesn't help my head it allows me to keep my mind of the pain and not get frustrated and anxious. I think it would help you.

I'll look into it, thanks.

Actually I find if I have really concentrated caffeine drinks--like the 3 shots of espresso--my head pressure gets so much worse, the worsening effect can last for 1-2 days before going "back to normal."  I get around this by just drinking more of the regular strength stuff, while avoiding smaller amounts with more caffeine.

I haven't been able to have caffeine pills or anything "concentrated" like that for years, because of this, and other strange symptoms brought on by that.

Curious, does alcohol make your pressure worse or better?  It used to make mine less noticeable for a few hours--granted I drank enough--possibly because of the painkilling action of ethanol.

Posted 3/7/2009 2:59 PM (GMT 0)
Well I would think that alcohol would make anything feel better but I am not sure ifn that points to anything specific. I haven't had a drink since this happened b/c I was terrified that I had brain damage or something. Do you have a stiff neck constantly? Also i am sure you looked into this but if you had a long period of addiction, Im not sure if you mentioned which drug, than you might want to look into the effects of that drug especially if it is of the "homemade variety" as these can contain random crap in them. Good luck and keep me posted.
Posted 1/26/2010 9:33 PM (GMT 0)
For Rooster 427. I am new here. My symptoms seem to be exactly the same as yours. I get up and feel pressure, numbness in my face and teeth, tingling. I showed your post to my radiologist today. My latest MRI does not really show a leak but the symptoms are clear. Here are some tricks. Try lying on your back with your head over the side of the bed so it is below your chest (supine position) for maybe 10 minutes. Try chewing gum as soon as you get up. Try an ice pack that straps to your forehead. All these things have made a vast difference, particularly the gum. My radiologist is willing to do a blood patch even though they actually did not find a leak because the symptoms are so clear. The lying down relief is the real key.

Buster 595
Posted 1/29/2010 12:12 AM (GMT 0)

Batman55 said...
Cheers mate, but what about for those of us with inadequate or no insurance?

How am I gonna get to the neurologist, get the dx of of CSF leak (if that's what I have), and then the epidural blood patch..?

I thought I would also mention that my head pressure tends to get worse when lying down, at least most of the time; caffeine and other stimulants make it worse, too.

Thanks so much for keeping us posted!

lemme know,

Batman

Ya batman.

If your head gets worse when lying down for an hour, your chance of this csf leak are like 1 in 1,000,000

If caffine makes it worse, same thing.

Your symptons are not likley of a leak at all. A doctor wouldnt even suspect it.

Now, maybe intercranial HYPERtension, but no way on HYPOtension

 

Posted 2/3/2010 7:37 PM (GMT 0)
If your head gets worse when lying down, this is not a CSF leak and you need to keep on looking.  The classic symptom is that all the symptoms go away when you lie down, particularly with you head below your chest like lying off the side of a bed.  Any numbness or discomfort should disappear even with a short nap.  Try my gum or ice chewing.  It really works.  The pressure is also reduced with a strap on ice pack they sell in drug stores.  Put it on your forehead and you will be amazed at the results almost right away.
Posted 2/6/2015 12:27 AM (GMT 0)
When you have CSF, are you also having some back pain?
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