feeling like ..... and grateful just the same.

By kja Tuesday, September 16, 2008

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The month of August was so bad for me. I suddenly realized I was really afraid it could get even worse. After 15 some odd days of migraine and changing medications again. I finally hit a brick wall and landed in the ER for the first time in my life. " I kept saying to the ER physician I really don't want any narcotics. My neurologist said no narcotics." In the end that is what I got and I stumbled out of the ER for a short reprieve. By the morning I had to take more triptans. I knew I was at that overuse point. A phone call later after a couple days. I was desparate and my husband thank God! Stepped in and got a hold of my neurologist and my regular doctor to coordinate some other treatment. It was a little complicated because my neurologist is out of state and thankfully my greater local doctor was able to coordinate with him so I could have the inpatient treatment I needed. I had to wait 24+ hours for the triptans to be out of my system so they could give me the IV DHE treatment. Those were the longest hours yet.

I was grateful to have my internist be so willing and helpful in coordinating this treatment and it actually broke the cycle. I still feel very fragile and I am waiting for my consult with a headache specialist 4 hours away. I feel undecided about which one to go to.(There are 2 in this area.) this point I am letting are so up and ups and downs and mixed up.I have been experencing lately are unreally.my husband take charge and help me just make it there. The emotions are so up and down and mixed up lately I just have to let it go.

So despite this horrible disease I am grateful for 2 doctors willing to work together and a husband who cares.

I hope you all have this support as well.

headache specialist visit

Comments (6) | Add comment

Nebula

9/16/08 9:22am

I'm so sorry that you had to go through all of that. I spent the first week of August laying in the dark at my parent's house...trying to break the overuse cycle. It is one of the most awful, painful things. I hope you find some relief soon; good luck!

Nancy Harris Bonk, Health Guide

9/16/08 10:37am

August is usually a hard time for me too. I had an IV infusion in my doctors office that was "sort of" effective.

A Migraine specialist is the way to go. Are either of the specialists on our Patient Recommended Migraine and Headache Specialist list? Have you had a chance to "check out" either of the doctors? HERE is the list, if you haven't already seen it.

This information, Migraineur's Guide To a Successful Doctor's Appointment may be helpful when you get ready to see your specialist. If you can bring your husband, friend or family member with you it is a good idea. It is important to have another set of ears in case we miss something during a doctors visit.

kja

9/17/08 12:05am

Thanks for the advice. I did get Dr. Goldstien's name from your list. I was referred to Dr. Goadsby but have not been able to get an appointment yet. At this point I will take the first appt. I can get. I am armed with my own notes, history, headache diary and questions. I hope they listen well.

What kind of IV infusion did you have?

Kathie

9/25/08 10:07am

I also have been getting much more frequent and worsening migraines and wound up in the ER for the first time in August. My husband has never had a headache and doesn't understand what I'm going through, so has become frustrated and impatient with even the word "headache." I've been seeing a headache specialist/neurologist who hopefully will be able to make a change, so that I can get my life back. You have a good husband who understood the "better or worse" vow.

kja

9/25/08 11:29pm

You are so right. He has been great and thankfully so. .He is probably one of the few people who understands the "silent disease" It has been nice to know as well that there are others through migraineconnection who share similar situations. This has been a support for me as well. This is also how I found a headache specialist. Good luck and keep in touch.

jujuhappybee

9/26/08 12:45pm

I've been in your situation as well. I live alone and I am very depressed. I ended up in the er too and nothing came of it. I live in Philadelphia but i found a Dr. in Ct. who diagnosed the disease as Hemicrania Continua along with two other disorders. I traveled to Ct. every 3 months fro 3 yrs. until the Dr. moved away.His name is Dr. Stewart Tepper. Look him up and fly to wherever he is.It will be worth the trip. I now go to the headache Center here in Phila. which is world renowned and I am getting treatment. They are wonderful. Dr. Wm. Young is a specialist in my rare disorder. I didn't go there before because of previous health insurance issues. I still struggle with this disease and I don't think anyone will understand how horrible and dibilitating it is unless they experience it themselves. Most people think of it as a "headache". That is where the problem begins. It is NOT a headache. It is a disease that doctors around the world are trying to learn about and understand to get us help.

Hang in there and don't asking questions. Read everything you can get your hands on. Also, sleep is the one thing that helps most of all.

I have to stay calm, no stress and take my meds THE SAME TIME everyday.

I know it is difficult but don't miss your life in the midst of this awful pain. I wish you well.

feeling like ..... and grateful just the same.

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