Sunday, May 27, 2012

My Loooong Story

By Sugar9486 Friday, February 22, 2008
I'm twenty-one years old and I have been suffering from chronic severe migraine headaches and daily tension headaches for almost three years now. At the time they started things were great, I was going to school for Criminal Justice and all of a sudden it hit me. They started with dizziness/lightheadedness and I was tired ALL of the time. None of my doctors could figure out what it was that was wrong with me. I had ALL kinds of tests done... Blood work, CT, MRI, Tilt Table (That one was interesting), EKG just to name a few. Everything came back normal except that my blood pressure was usually low. I was told to add more sodium to my diet. I put salt on EVERYTHING I could think of, I even went so far as to shake the salt shaker in my flavored drinks. My blood pressure went into normal limits, but still lightheaded all the time. I contacted a few neurologists, but none of them could see me for six weeks to two months. At this point I had taken a semester off from school because some of my teachers were not as understanding as they should have been. This whole time I didn't have a headache at all so it was hard to diagnose. Finally after a few trips to three different emergency rooms, I passed out on a doctor and they finally admitted me into the hospital. This day was by far the very worst up to that point and my head had started to hurt. They gave me some medicine for the pain and some fluids and some reglan for my nausea which had popped up here and there the whole time, and I actually slept GOOD all night long for the first time in a while. The next day I saw a neurologist and was diagnosed with migraine headaches. When he took my history I told him I had always gotten frequent headaches (for as long as I can remember really) and that I saw Sparkling floaty thinkgs and sometimes zig zags. So I thought things were finally looking up I found out what the problem was, I found someone to help fix it, and I wasn't in pain or dizzy anymore. At this point I was discharged from the hospital and sent home with many prescriptions. For a preventative I had topamax, and as an abortive I had imitrex pills, and for breakthrough pain I had vicodin and some reglan so I didn't feel even sicker. This worked for a while. However then the headaches seemed to come quicker and stronger and more frequently. At this time I was given a few different kinds of triptans to take, I tried maxalt, relpax, and a few others and none of them worked any better then the imitrex, but we knew that it was because I wasn't taking the medication fast enough. My problem was I woke up in the middle of the night with a full blown migraine by the time I got the medicine in me it was "past the point of no return." The next step was trying the migranal nasal inhaler because that delivers the medication faster. At this point I was also taken off the topamax and changed to Elavil and they gave me Fioricet to take for pain. After that I had many more appointments and was hospitalized a few more times. At this point I was having a constant daily headache and I was getting migraines 2-3 times a week. Some of them lasting up to 26 days. Things weren't getting any better, in fact they were getting worse so my neurologist told me he didn't think he could give me the help I needed because he was running out of options so he refered me to the Jefferson Headache Clinic that is suppose to be the best in the country. The doctor I saw there changed my Elavil another antidepressant that is almost the same thing called pamelor. He also added Zoloft. Well this combination didn't work so I went back and told to doctor this and he said to keep trying it and gave me a nerve block and he said if I got a bad headache to call him and we'd try infusions. At that appointment he told me that I was using too many over the counter medications and I was getting headaches caused from that. I laughed in his face. I guess he thought I said that I was taking 1-2 pills of advil a day, but I had said a month. I am not a big fan of taking medicine at all and I am very stubborn about it, I would never take that much advil! So I explained to him that I got a bad headache and he told me there was nothing he could do for me beacuse I take too much medicine and thats causing all of my headaches. That was the last time I saw him. I went back to my normal neurologist who was in the process of establishing a headache center of his own. I was very happy with the progess we were making. It was kind of ironic that the reason that i went to Thomas Jefferson was to try something new, but they didn't, when I went back to my Dr.'s office they did and it work.. go figure. My meds were changed to Welbutrin and the Topamax again, this combination was great! I was also given Ultram, Zanaflex, and Fioricet for the pain. I also saw a physical therapist that only works with headache patients. I have also seen a TMJ doctor and now have two mouth guards one for during the day and one for night, so my tension type daily headache has gotten much better! Then the problem I had was with my Doctors office. The reason I really pushed for Thomas Jefferson in the first place was because the office staff at my doctors office was HORRIBLE. They are mean and nasty in person and on the phone, they never return phone calls, the doctors say to set up appointments and then you go to do that and "the calendar isn't open" is the answer you get. I was suppose to be seen in the first week of August, I told them this in the end of May. I put my name on a list so that they would call me as soon as the August schedule was open, well I never got a call. So then I made an appointment with another doctor.. that was no good either. I got to the office and the Dr and her Receptionist were talking (Loudly with the window open) about how "funny" it was that one of the local hospitals had admitted one of her patients with a migraine. She was standing there in front of me LAUGHING about someone being admitted for a migraine.. that was strike 1, then the receptionist asks who one of the patients on the list are the Dr replies, "oh thats not a patient, thats my lawyer, I have a malpractice suit up again, oh is there anyone in the waiting room? There is? We should shut the window" yeah thats professional, so she didn't work out. So now I am with a new Dr out of Lehigh Valley Headache Center (It's a small HA center in PA) and I haven't gotten much help, but I guess at least their trying. My Welbutrin and Topamax have been increased and I'm now on DHE, Percocet, and Zofran Prn, but I'm still in horrible pain 90% of the time. Hopefully sometime soon I will find my cure!
Nancy Harris Bonk, Health Guide
2/22/08 1:57pm

Hello, and welcome to MyMigraineConnection.com!

 

Migraine is a genetic neurologic disease, a condition that is currently managed, but has no "cure."

 

Trigger identification and management can play and important role in our Migraines. Have you tried keeping a Migraine diary? We did this with our son and found he has a few triggers. They include chocolate, dehydration and changes in his sleep schedule. We have a diary you can download HERE.

 

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information on the main page of our site, http://www.MyMigraineConnection.com. You can also sign up for our free newsletter about Migraine disease and headache disorders on the home page in the upper left hand corner.

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,

Nancy Bonk
MyMigraineConnection.com Expert

PS: If you receive this message from more than one of us, please excuse the overlap. Thanks!

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By Sugar9486— Last Modified: 09/06/11, First Published: 02/22/08