Spinal headache and spinal tap?

[abporter]

Greetings,

This is my first post in this forum. I've had fatigue for 3.5 years and have had a SPECT brain scan, QEEG, and MRI done as well as many other blood tests. I get a tension in my head at times which increases to a headache and body contractions if I don't lay down. I saw a neurologist last week and she mentioned the possibility of spinal fluid leaking which can cause certain symptoms like these. A way she said to find out is to have a spinal tap and measure the spinal fluid pressure. The treatment is then injecting blood to clot the leak. For more info, I researched it and found this website: http://www.spinalheadache.org/patientinfo.htm

I've noticed the past 3 days that when I lay down or put my head on a decline below my waist the headache or brain fog goes away very quickly. Don't know if this is due to spinal fluid, blood, or something else, but I have an appointment with the neurologist again tomorrow afternoon to discuss this and figure out if I should go ahead and have a spinal tap done. Since I don't know how knowledgeable she is of CFS, I am wondering if anyone has any recommendations, if I do get a tap done, of the things that would be also good to test for in the spinal fluid related to CFS.

Thanks for your time!
Brent

 

[*GG*]

I saw a Neurologist for 2 years due to my headaches and back pain but he was rather useless in helping me. My bias, I guess. I would say check out the co-cure site for good drs!

I think if you get a spinal tap done you might want some rather extensive testing done if you have CFS?

Check out this thread and article: http://www.forums.aboutmecfs.org/sh...l-Tapping-For-ME-CFS&highlight=spinal+tapping

 

[dsdmom]

I don't know much about testing fluid for CFS, but I did have spinal tap a few years ago in the ER and the stupid drs never told me to lie down for a while or drink fluids or anything. They just sent me on my way...well you can probably guess what happened. the WORST headache I have ever experienced and it lasted a full week. I never thought it would go away! We talked about injecting to clot the leak but that in itself can cause problems so I just sucked it up - so I am so sorry if that is the type of headache you are having!

 

[abporter]

Thanks

Thanks for your responses! I haven't had the LP done yet, but I had a headache today and it gets better or goes away when I lie down. I've heard there can be complications with the high volume blood patch if they find a fluid leak, but it seems worth it to try if there is a chance of repairing it.

 

[Stone]

I had a spinal tap and I didn't lay down right away but went to breakfast with my dad and then went home. Big mistake. I couldn't tolerate my head being higher than my heart for days because of the headache...crawling to the bathroom and making accommodations for my...uh...needs...will not be described here but suffice it to say it was not as fun as you might expect. All in all it wasn't the worst. they were looking for MS but the results were inconclusive.

 

[markmc20001]

I would get another opinion on this one. A spinal tap is a major procdure in my mind, I had one and it went bad.

I can;t see how adding an extra hole to your spinal cord would do much good for pluggin holes in your spinal cord. (I had to have the blood clotting procedure after doing a spinal tap that left a hole in my spinal cord) Headaches and lightheadedness and stuff is common in CFS. I would seek out a good CFS doc to rule out infections and such before doing a spinal tap.

 

[forgottenstar]

Just a follow up, have you recovered yet or recieved the clot?

I had a spinal tap done in the ER before being admitted for a day and then sent home. The next morning I woke up with the worst headache known to man- it actually felt like my brain was bouncing around in my skull. My mom rushed me back to the hospital to find that the tap did not close correctly and I was leaking spinal fluid- my body was trying to close the hole itself.

17 needles later (I was dehydrated from being severly sick and my veins had collapsed at this point), they had pulled out enough blood from my arms to inject into my back to clot it. A cup of apple juice and a 20 minute wait, headache was gone.

 

[JMK]

Abporter, please keep us posted on how you are doing. Sorry to hear of your headaches! I've had a spinal headache twice. Terrible! Both times were after I received a nerve block in my back. I was down for 3 days each time. They were the worst headaches imaginable and I had to lie completely still, for any movement would cause my head and face to feel as if they were being electrocuted.

 

[Stone]

Headaches are so common in CFS as you know, I'm sure. And there are different types of headaches associated with CFS too, so it's challenging to figure them out. I did think of something when reading your original post. Your headache goes away when you lie down. If your blood pressure isn't high and you're not on a salt restricted diet for some reason, I wonder if increasing your salt intake and your fluid intake could help. It's a simple thing to try and shouldn't hurt you if sodium doesn't constitute a risk for you but of course check with your doctor to make sure.

I get a lot of headaches of different types: muscular tension, intolerance of light, stress, food sensitivities, the 'mystery headache', and so forth. I can even get a headache from low blood volume. I remedy this by eating potato chips and French onion dip (the extraordinarily salty and delicious kind you make yourself with a packet of Lipton Onion Soup mix and 16 oz. of sour cream). If this isn't something you would eat or you're watching your calories or fat, there are other very salty foods with little or even no fat or calories that work well like pickles for instance. And I greatly increase my water intake. The salt will do no good without increasing the water intake. The salt helps you retain the water and sort of fluffs up your blood volume temporarily. I have absolutely no idea if this will help you, but it helps me when I get that type of headache from low blood volume. I can usually tell it's that type of headache because it goes away when I lie down, and I don't feel well in general when I'm standing up, and I have a strong urge to lie down whenever I'm standing up. I hope you get to feeling better very soon. Good luck to you. And again, make sure your doctor says it's not dangerous for you to increase your salt and water before trying this. It can be hazardous for some people.

 

[ScottTriGuy]

fyi:

Spinal Fluid Leaks...

http://forums.phoenixrising.me/index.php?threads/spinal-fluid-leaks-dr-ian-carrol-stanford.43359/