I saw this post, and I would really like any advice you can give on how to treat a spontaneous CSF leak. It took about 1.5 months to figure out what what going on with me, but a neurologist finally did an MRI of my spine and a spinal tap and found that I had a leak, but they couldn't see where it was. I have had two blood patches in 3 week, and although I feel a bit better, I'm not back to my old self yet. Is there anything else I can do or advise my doctor to do? He is having me take caffeine, drink lots of fluids, and rest. What are some other options. I am a 27 year old active female, and I really just want my life back.

I went through various doctors till I was dianosed and finally found one who would be willing to help me and not just tell me to take 2 asprin etc. You may need to seek out a doctor who has delt with this before. I have not had a blood patch but I heard you may need many of them before it actually works. I have had my leaks repaired but now I think I have another one. My nerosurgeon is planning on sending me for a nuclear cystigram which supposidly helps locate the leak as well as determing for sure you have one. Good luck.

Well thought I would throw out and update to everyone. Been suffering with low pressure headaches for several weeks now and slowly getting worse by the day. Also ringing in the ears and slow nose drip. Last Thursday got so bad went to the hosptial ER and you guessed it. Another leak has appeared and this one must be operated on to get my life back. I can not stay out of bed for more than 20 min at any time. Get my leak repaired this Wed and hopefully it will not start up again. this makes 4 surgeries on my head in less than a year.

this condition sucks.
Ill keep you posted.

Well not diagnosed but dr suspects I have a leak... He has me on bed rest, caffeine and steroids & lots of water but there are good days and bad days and seems the bad days are becoming more numerous. Still have to wait a few weeks till I find out what his next step is cuz he also has me on anti-seizure meds for migraines. No way I have a migraine. Tell me anyone you know that suffers migraines that majority of the time can feel better when laying down and gets worse while upright?

After some research I was anxious and excited to take that next step and be over this but now I after reading this forum I am scared!

venusny31 how many times you had leaks and what causes them or at least the first one?

Everything I read online said most epidural blood patches gave immediate relief but occasionally a few more would need to be administered. Someone show me there is a silver lining and something to look forward to please?

Also... I have recently last 5 days had diarrhea and the nausea has gotten alot worse that I have to take meds now, is that normal? I had read that nausea and vomiting are but hadn't heard about diarrhea... on the good side, since this started, Aug 2nd, I have lost 21lbs hehe... just 20 more to go to target weight hehe guess that is a silver lining!