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.

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Comments

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  • mikayla-rose
    12 months ago

    HI! I am going for my first appointment at Jefferson in March and will also be seeing Dr. Young. I have been reading through your posts and have found them very helpful (but make me very nervous! haha). I was wondering what you though of Dr. Young? I also have chronic migraine. I started with normal migraines that I would get here and there, but for the past 6-7 years I have had one every single day from sun up to sun down. I’m hoping to find some relief here!

  • Katie M. Golden moderator
    2 years ago

    Painwontgoaway- I can offer a series of stories I have written about my time at headache camp. Shere list below. There is also a thread in the forum where many have shared their experiences. I wish you the best of luck!
    -Katie
    Migraine.com Team

    https://migraine.com/?s=headache+camp&submit=Go
    https://migraine.com/topic/jefferson-headache-clinic/

  • lhcoastal
    2 years ago

    Katie, I have a few questions about inpatient at Jeffs. Can you bring food that needs refrigeration? I eat tons of yogurt. Can you order food in from restaurants? Street clothes or PJ’s all day? Can you walk around by yourself for exercise? Is it generally safe to bring a laptop? Can you shower daily? I’m going in at the end of the month. Any tips would be appreciated. I don’t eat processed foods so I am concerned about the food and if there is a patient fridge.

  • Maureen
    2 years ago

    I, too, am a patient at Jefferson. I see a different doctor. The first visit is very long. Bring snacks. (The fire alarm went off while I filled out my registration form…not kidding!) Do not assume that the first treatment offered to you will be in-patient headache camp. The doctors are specialists. Be your own advocate, but let them do their specialty. They have the great reputation they do because they deal with the most difficult cases all of the time. You might want to take someone with you to help process all of the things you will learn (maybe take notes) and to figure out how the office works (who do I call, when do I call, how long can I expect to wait for a response, etc.). It is hard to remember to ask all of these things when your most urgent question is, “Can you make it stop hurting?!”
    Best wishes for a pain relieving outcome.
    Maureen
    P.S. I feel like the lights in the office always make me sick, but I have gotten so much better overall since starting treatment there. I hope you find success as well!

  • organizedcarbon
    2 years ago

    Hi there, I am being seen by Dr. Young for the management of my migraine. I had a 4 month long chronic migraine that we were finally able to break.

    I am so sorry you have been suffering, you are so immensely strong.

    I was ale to break it and actually cancel my infusion therapy. From what I remember, they wanted to do 3 out patient visits, but all day visits. For me this was difficult because I live in the Philly burbs and I don’t have anyone to drive me. I was not confident about how the infusion would affect me (as my ER visits had me have full on panic attacks with the reglan they administered and I get bad restless leg. not fun) so i didnt want to drive (to $20 plus/day in that area of Philly) or take the train then the hospital shuttle. (Or taxi at easily $30 each way for 3 days) For me, the logistics of trying to negotiate all of this was a disincentive to take them up on this camp.

    Other than that, things have been fine. The office people are sometimes really kind, sometimes super rude, I have not figured out how to unlock their kindness. The waiting room invariably have really thoughtless people I feel violent toward as they are talking on their phones IN the waiting room and being loud in general, but there are more quiet/dark spaces you can escape to if you need to.

    Dr. Young is kind, very knowledgeable, but expect to always have an audience, I have never seen him alone as there is always an intern or underling or whomever at his side when he sees you.

    In my experience, the nurse practitioners who are there are the best, I have had great success with using them.

    Despite my complaints here, this place broke my migraine when no one else could, this as my third neurologist and contemplating suicide by the end of it.

    I hope you get what you need and I hope this has been helpful.

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