Hello all,

I'm 24 and I have had a headache 24 hours a day, 7 days a week for 4 and a half years. It has impacted my life in ways I never thought possible, disabling me and preventing me from doing much.

I have seen every type of specialist, been on about 25 meds, had every diagnostic exam (MRIs, MRAs, MRVs, CAT scans, lumbar punctures etc) and had them repeated, had several types of injections, biofeedback, pain management programs, lots of continuous IVs: DHE, magnesium, depacon, zanaflex, dexamethasone and a few others.

Until a few weeks ago, it had been 2 years since I had an MRI. Until then every type of diagnostic exam I had come back normal. This one showed the I have a cerebrospinal fluid leak and the CSF is accumulating in my lower back. I had back surgery to remove tumors, surgery on my nose and 3 lumbar punctures (spinal taps). I believe any of these can cause a CSF leak. Anyway the CSF leak may be causing my headache; I will see my neurosurgeon soon and learn more. The fact that I have a CSF leak is the best news I've gotten in years.

Here's to hope that the leak is causing my headache so I can get my life back.

ES

I'm so sorry you have been in so much pain and for so long.
Have you had an IV of a narcotic to try to stop this pain?
Have you tried Topamax as a preventative medication? People have had fairly good luck taking this medication as a daily preventative. Sometimes Topamax along with a second daily med makes a big difference.
It's possible that there are a variety of sources for your headache and you will want to tackle each one. But until then, Topamax might provide the best overall relief.

I have tried Topamax and it did not help me. I haven't tried IV narcotics although vicodin is the only thing that has helped the pain. If I did do IV narcotics I would feel relief when the IV would be in place but the pain would return when it wore off.

Let me no what you find out I have had terrible headaches for ever. The dr took all the test they can. I they don't believe it's my shunt, but I've had a shunt revisions and lumbar taps. I will be seeing my neurologist I thought of bringing this up.


I hope your headache are a simple leak they can take care of. Good luck. From someone knows I would not wish these on anyone.

Shelly

Let me no what you find out I have had terrible headaches for ever. The dr took all the test they can. I they don't believe it's my shunt, but I've had a shunt revisions and lumbar taps. I will be seeing my neurologist I thought of bringing this up.


I hope your headache are a simple leak they can take care of. Good luck. From someone knows I would not wish these on anyone.

Shelly

I read somewhere else that topamax did not work for you. My dr. is trying that on me, I was on like the 5 week of higheringit up, and that was 3 weeks ago. My other doctor increased the prssure on my shunt. now the headaches that already had me out of work are worse ever, and I didn't there was a worse then ever. I can't even remember if the tomamax was starting to work. I think the reason it doesn't is because topamax is for migraines. You don't have a migraine, neither do I. I feel the best when I am in bed, on a dose of morphine for someone twice my size, I'm 4'11". I even went to work on a dose like that. . I can't live that way.

Please investigate myofascial pain and trigger points if you have not already done so. I have a similiar situation and have been through the tests, drs, meds, etc. Trigger point therapy has given me relief and gotten the headaches under control!! As to pain meds - Topamax did nothing for the headaches - Ultram (Tramadol generic) has worked consistently.

~ K

Wow I am sorry---I leaked spine stuff---had a headache while I was leaking..

Lord No one should have to go thru that---I ache for you-----


Anything I can be assistance with lemme know

Hi...been there done that. If you have a CFS leak take it from me....the only way out of the pain is.....flat on your back, lots of water & no alcohol (avoid dehydration), NO painkillers (they don't touch it), and time with no stress either physical or mental.
There are some interesting patches available, including something called Fibrin. Keep researching and know that all of us with CFS leaks can feel your pain, and feel the frustration of dealing with the medical community who most of the time pooh poohs us and tells us it is all in our head (DUH!)
They gave me several "anti-anxiety" prescriptions...HAH...which didn't touch the pain or the problem.
My leak is between my shoulder blades and visibly swells when it is leaking, and yet even Stanford University Hospital told me it was unrelated.
So...take it easy and if you find a cure let me know.

I have had a spinal fluid leak for 3 years. I just had a spinal cord stimulator implanted so I have gotten off all my meds and I can really feel the leak again. I feel alot of presure and a slite headache again. When it first happened, due to spinal fusion, I was bed ridden for three months due to headaches. The Fentynal pain patches really helped. Also I went to Shands for it and they said eventually my brain would get used to it. I thought it did until now. After getting off all the drugs I still feel it in my head literally!!! I would lay money down that your headaches are from your CSF. There are things they can try to stop it but none worked for me. My DR gave up. Did all he could. I will pray for you.

Hi there!
I know EXZACTLY how you feel and what you are going threw!!!! I have had MAJOR CONSTANT headaches for a little over 4 years- I have NEVER had headaches before and NEVER took anything for the tiny little normal headaches I might of ever had before the constant big headaches happened. I have been to ALL kinds of hospitals , had all kinds of tests even went to the CLEVELAND CLINIC and had all kinds of NEOSURGENS doctors and IV therapy tests etc there. nothing was found- no one had any clue what was happening to me- they basicly made me feel like I was crazy and used me as a ginny pig for test upon tests. Sleeping in bed is all I ever did- I couldnt work because of the headaches and NO ONE understood! It wasnt til last year I started to fall down alot and not take much care of myself...(that is sooo not me) actually alot of strange things started to happen...then I kinda went blind even...Thats when I went into the hospital and here they found that I had a cyst in my 3rd ventrical of my brain that grew to stop my spinal fluid from going around or where it should be. I had to get ASAP brain surgery of a vpshunt. My pressure is great but guess what? Its only been 6 short months that I have had the shunt and I am starting to get the constant headaches back It was great not to have headaches again that I even forgot what it feels like not to have one. I am sure you know that feeling. I might have some infection brewing or something in me for I dont understand why I am having headaches again...As for you, have any doctors checked your pressure in your brain? that sounds exzactly what had happened to me- I am soooo sorry for I know how you feel and what your going threw-but just know one thing.... YOU ARE NOT ALONE & soon they will find out whats going on and it will all be over with! if you need a friend to talk to I am here Take care and try to hang in there