Constant headache for 8 weeks. This is the 3rd time this has happened

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Specialk97
New Member


Date Joined Feb 2012
Total Posts : 8
   Posted 2/21/2012 7:53 PM (GMT -7)   
I am just joining this forum as I am having the same symptoms as other people. So far, I'm still on my first neurologist. He is very smart, a headache expert and seems to really care about my pain, although he does through pills at me. I think I have a low pressure CSF leak, as I have a lumbar puncture 12 years ago and had a blood patch that never really worked fully and continued to have ongoing 24/7 headache for a few months, then just went away. Thought that was the end of it until 2 years later, it started again, except this time, I had no lumbar puncture. All tests negative and no medication would control my pain. Lasted about 2-3 months, then went away. Then again in 2005, same scenario. Many MRI's and other tests all negative for anything and I was told that There was no evidence of a CSF leak. As a last resort, I tried Botox,a nd it worked within a few days, my headache was gone. Then on Dec 22nd 2011, 6 years later, it started again and is still going on. I am convinced that I have a leak that never fully healed and for whatever reason, it opens up sometimes and causes theses headaches. They usually do disappear with time, but it is so hard to be patient. He is now sending me for an MRI of the brain w/ contrast as well as an MRA with contrast to check for vasculitis. He said that if I have a leak, it needs to be fixed with a patch, but I vowed that I would never, ever, have another lumbar puncture for any reason, cause chances are, it will make it worse. He is convinced that this is being caused by something else, and wants to give me piece of mind by doing the scan. He said that he will have a pretty accurate scan to give me an answer if I have a leak or not. If I do, I want it fixed with surgery and no other way so it will be permanent. He wants to wait on Botox until the tests come back. He is also concerned about vasculitis in the brain since my protein levels have come back elevated twice, as well as my platelets. I am very scared. This is consuming my entire life. I go only where I need to go and do what I have to do. I have no other life outside of doctors and work, groceries and laundry. I cry everyday and don't even want to get out of bed in the morning. My headache is better than it was a month ago, but still not completely gone. I am so scared. It is nice to be with other people in the same boat. Thank for listening. Please posts if you have an thoughts or suggestions. I'm open to anything. Thanks everyone.
confused confused confused confused confused confused confused shakehead shakehead shakehead shakehead shakehead

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15857
   Posted Yesterday 3:51 PM (GMT -7)   
I am really sorry you're going through this. I can tell you're stressed and it is understandable. It sounds like you're in the hands of a good neurologist and the best thing you can do is wait and see what the tests show. I am a big believer that a 2nd opinion is generally a good idea, you may want to see if there is another specialist in the area and get another opinion. Try to stay calm, things will get better.

I hope you're able to get some feedback.

Welcome to Healing Well :)
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: Asacol (2800mg) + 6mp (25mg) + Pristiq (50mg) + prilosec (40mg) +Canasa (1g PM) + cerazette

Specialk97
New Member


Date Joined Feb 2012
Total Posts : 8
   Posted Yesterday 4:27 PM (GMT -7)   
Thank you so much for your support. I went today for my MRI and MRA and the doctor already has the results and called me to let me know that there is no evidence of anything. No CSF leak(which is what I was most afraid of)because these headaches mimic exactly the headaches I had when I had a leak. No evidence of tumors, lesions, or vasculitis. He said the vessels are draining great. He thinks that it is just a real bad migraine that is not responding to medication. I don't know where I go from here, but at least I have some piece of mind that I don't have a leak. I'm just frustrated and I don't know where I go from here. He wants me to continue the Pamelor 95 mg daily and try to stay off the Duragesic patch if I can. I have already been on it for a month and it didn't completely help, but did a little bit. He is sending me for more bloodwork again to check for other things this time around. My neurologist is really good, he specializes in headaches and most his patients have headaches.  I feel like there is no end in site to this horrible tunnel I'm in. A second opinion might not be a bad idea. But I don't want to upset him though and have him think that I don't trust him. shocked   

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15857
   Posted Yesterday 5:39 PM (GMT -7)   
That's great that your results were positive but it's unfortunate that you didn't find any answers. Have you ever tried an antidpressant for your migraines? I started taking Pristiq daily as a preventative and I haven't been having migraines at all. I also use Zomig if I have a break through. I used to take an NSAID called ponstel that I found to be extremely helpful but I have a colon condition and NSAIDs are a no-no. It would be so simple if I could just take the NSAID here and there but Pristiq has provided relief and I am thankful for that.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: Asacol (2800mg) + 6mp (25mg) + Pristiq (50mg) + prilosec (40mg) +Canasa (1g PM) + cerazette

Specialk97
New Member


Date Joined Feb 2012
Total Posts : 8
   Posted 3/14/2012 3:04 PM (GMT -7)   
Update: I had botox injections on March 8th, 1 week tomorrow. I pray it works. It did last time. He gave me 31 injections across the front, side and back of my head. It is no instant, sometimes it takes about 2 weeks to feel the effects. My headches seems a little better, less intense, and more in and out, as oppossed to constant nauing, achy feeling, but still there none the less. I'm still pretty scared. If this doesn't work, I don't know where to go from here. My husband is not very supportive and he thinks its just going to go away and I should just go on with my life, cause it is "just a headache". He has no idea. He has never experienced this and has never had chronic pain. The doctors and my family want me to just "hurry up and wait". That is why it is so hard to treat this as an outpatient. Going to the ER does no good, so the only way to get real treatment is to go to a headache clinic with real neurologists and teams of doctors and this is all they do. 23/7. I pray I don't end up there and I pray this botox works. According to my records, It took about 10-25 days to work last time. We have some good friends coming to visit us from Chicago at the end of March and I pray this is gone by then. I'm still pretty anxious, which I know does not help matters, but I keep trying to explain to people that is what chronic pain does to you, especially when you don't know how much longer you are going to have it. cry mad

Post Edited (Specialk97) : 3/14/2012 4:42:54 PM (GMT-6)

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