Tell us about your symptoms and treatment experience. Take our survey here.

Thomas Jefferson In-Patient Program "Headache Camp"

For over 20 years, I have suffered from episodic migraines, but almost a year ago, these episodic migraines turned into a chronic migraine that is hard to describe. The pain is always on my right temple from my eye to about 2 inches to the right and is very localized. In the past, sumpatriptan has always wiped out the migraine completely but since it turned chronic, it only seems to cover it up for a few hours and then when the medicine wears off, the migraine just restarts.

I have been diagnosed with everything from neuralgia (which I had temporal nerve surgery for), to nummular headache (which it still may be) to just an intractable stubborn chronic migraine that refuses to go away. The migraine just feels different in a way than it used to be. It feels as though it is deep in the brain to where nothing seems to be able to cure it. The best analogy I can thing of is like where you put a sticker on a wall and then come back a week later and try to take it off and you will find it very hard to peel off off. This migraine is very hard to peel off. It has literally not gone away in a year and a half. I am literally not exaggerating. 24 hours a day, 7 days a week. I go to sleep with it and I wake up with it. I've had to see a psychiatrist about it because the pain was so bad at times, I was punching a wall so hard, my fingers would be bloody. Just harming myself anyway I could. I can barely function in the day with it and when I get home, I go straight in bed. No social or active life whatsoever because working out only makes it works and I have also gained about 50 pounds. This is really sad because I used to have a very active life and ran about 4 miles per day and had a very healthy lifestyle and also a very social happy life. Now my life quality is 0 and my depression level is a 0. I tried anti-depressant amitriptilyne which is supposed to help but it actually made the headache worse.

I have had an MRI/MRA done in the past but was thinking about doing another MRI with contrast. I also had about 5 Botox treatments and 5 nerve blocks and a magnesium infusion as well and nothing worked. I've been on over a dozen medications and nothing has worked. I am currently on Topomax but its really not doing anything except giving me joint pain.

Usually people have migraines a few times a week and take medicine that goes away. I have never heard of a person having a headache in the same stupid g-d damn spot (excuse my language) for a year and a half without even an hour of relief. This is compete torture. Sometimes I just go to sleep praying I do not wake up in the morning.

Current medicines I am on: Topomax, Valium (it helps ease the pain a little and helps with the anxiety), sumatriptan (helps bring the pain level from a 9 to a 5 but only for a few hours) and I take heartburn medicine.

OK sorry for the long story.... anyway, after 2 months of trying to get an appointment which is practically impossible, Thomas Jefferson Clinic, finally called me back and I made an appointment with Dr. William Young on May 17th. Dr. Young is supposed to be one of the best there. Apparently first they do a very long psych evaluation and then determine whether the in-patient stay is necessary. I'm guessing from my long history, it will be. Has anyone been to the Jefferson Clinic that can offer advice? I heard that if there is a place that can help me, it is this place. If there is anyone that has any tips, please reply/comment because I would love some advice. I will keep everyone updated on how everything goes after my initial consultation. I know people are wondering about this "headache camp" as they call it.... Any type of information anyone has, or if anyone has been to Jefferson before, please let me know how it went. Thank you.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Do you feel comfortable advocating for yourself to your healthcare provider?