So last night I went to bed. I actually did the movements the physical therapist showed me to keep my neck and shoulders free of tension. Well I think I am going to make that part of my nighttime routine because I woke up...and felt amazing! When we got up, I looked at my husband and exclaimed "I don't have a headache!" and he was just as happy as I was.
To celebrate, I made us a breakfast my husband has been asking me to make for quite some time, but I just wasn't up to it. I have a recipe for whole wheat yogurt pancakes that are AH-mazing. So I made us breakfast and then we took our little munchkin to the park. We had so much fun!!! She amazes me what she can already do at two years old. She also seems to have an endless amount of energy. She made friends with another little girl at the park and the two were so cute together. She was so worn out she went right to sleep for a nap, giving me a little time to write a few posts :-) Now my husband and I are going to go through some items in the garage since he's been bugging me to do it for so long. I'm hoping this no headache streak is going to go on for a long time!
Having a day where I feel good is like a foreign feeling to me. I had a headache from April 16 until yesterday, May 12. That is just under a month. I feel like I lost a month of my life. But I'm not going to let that stop me now. This headache will not win! I will find a way to be the wife and mother I want to be.
Monday, May 13, 2013
Diamond clinic day 5
Well today is my last day at Diamond. Though my headache is still not completely gone, it has decreased to a level that I can function on. What I really enjoy is that they not only addressed my headaches, but treated the whole body and from any muscle tension that causes headaches, to the mental anguish that comes with having chronic migraines. Before I left, they gave me referrals to a physical therapist who I am to see two times a week for four to six weeks, and therapists in my area that I can see for my mental well being. I got one more treatment of Norflex before I left and took my meds that I needed for the rest of the day (since in my town the pharmacy closes before I would get home).
I must take a moment to show gratitude to my nurses - Mary, Niki, May, and Victoria. They were so wonderful. I never felt like any of them were there for anything but to care for me. I cannot even put into words how much they made being away from my family so much easier.
The first night my husband stayed because we just weren't sure if I made the right decision going there. But on day two I had to kick him out and send him home because I had no reservations about being there with them. I knew I was in good hands. the nurses are absolutely fabulous. They all deserve to be given a considerable raise!
One thing you may not have seen me mention the whole time I was there is the food - it was just god awful. The saving grace was that there was a tray of fresh fruit delivered to the floor every night at 7:30. On the positive side, I did lose eight pounds while I was there! Yay!
Once we got home my mom brought my daughter back and it was just wonderful to see her again. I missed her so so much. I was just sad I couldn't do anything fun with her because I was still exhausted from everything. I think I went to bed before her! And we slept in until about noon the next day. It was great to finally get some good sleep at home.
The next day was Mothers Day, and I was just so glad to be home. I was so wiped out I didn't do much. My mom and dad did come over and we had dinner together, which was really nice. I got to bed at a decent hour and slept great.
I must take a moment to show gratitude to my nurses - Mary, Niki, May, and Victoria. They were so wonderful. I never felt like any of them were there for anything but to care for me. I cannot even put into words how much they made being away from my family so much easier.
The first night my husband stayed because we just weren't sure if I made the right decision going there. But on day two I had to kick him out and send him home because I had no reservations about being there with them. I knew I was in good hands. the nurses are absolutely fabulous. They all deserve to be given a considerable raise!
One thing you may not have seen me mention the whole time I was there is the food - it was just god awful. The saving grace was that there was a tray of fresh fruit delivered to the floor every night at 7:30. On the positive side, I did lose eight pounds while I was there! Yay!
Once we got home my mom brought my daughter back and it was just wonderful to see her again. I missed her so so much. I was just sad I couldn't do anything fun with her because I was still exhausted from everything. I think I went to bed before her! And we slept in until about noon the next day. It was great to finally get some good sleep at home.
The next day was Mothers Day, and I was just so glad to be home. I was so wiped out I didn't do much. My mom and dad did come over and we had dinner together, which was really nice. I got to bed at a decent hour and slept great.
Saturday, May 11, 2013
Diamond clinic, day 4
Today has been one of the hardest days. I am almost finished with my DHE treatments, and they told me I can get worse before I get better. My headache level spiked to a 9 out of 10 on the pain scale. When I was admitted I was at an 8.
They tried a few things-alternating between Norflex and Benadryl given through my IV. It seemed to bring the pain down some.
Today I had diet class where they go over a low tyramine diet. For those who have never heard of it, tyramine is naturally occurring in foods, so you will not see it in a label. From what I understand, tyramine content increases as foods age, especially those with high protein content. So items like aged cheeses, sausages, pepperoni, lunch meats are all items that increase in tyramine. It is especially important to follow a low tyramine diet if you are on a MAOI inhibitor, as the tyramine can impact the medication.
I think what I will miss most about implementing a low tyramine diet is beer from the tap. I know that's silly, but my dad is a brewer and I love trying all of his delicious recipes.
I also had my second biofeedback appointment today, and I felt a little more in control of my body functions this time.
Today I was also told that I would be discharged on Saturday, which I was not happy about. I still do not feel well enough to return to my normal routine, but the insurance company doesn't want to pay for it any longer. So I get to go home. But it will be wonderful to be with my family and not in the hospital for mothers day.
They tried a few things-alternating between Norflex and Benadryl given through my IV. It seemed to bring the pain down some.
Today I had diet class where they go over a low tyramine diet. For those who have never heard of it, tyramine is naturally occurring in foods, so you will not see it in a label. From what I understand, tyramine content increases as foods age, especially those with high protein content. So items like aged cheeses, sausages, pepperoni, lunch meats are all items that increase in tyramine. It is especially important to follow a low tyramine diet if you are on a MAOI inhibitor, as the tyramine can impact the medication.
I think what I will miss most about implementing a low tyramine diet is beer from the tap. I know that's silly, but my dad is a brewer and I love trying all of his delicious recipes.
I also had my second biofeedback appointment today, and I felt a little more in control of my body functions this time.
Today I was also told that I would be discharged on Saturday, which I was not happy about. I still do not feel well enough to return to my normal routine, but the insurance company doesn't want to pay for it any longer. So I get to go home. But it will be wonderful to be with my family and not in the hospital for mothers day.
Diamond Clinic, day 3
So it is now Thursday, and I am feeling slightly better. I was able to get up and shower, as well as attend the pharmacy class. In the class they went over the different types of medications that are used and any precautions we need to take with them. I found this Very helpful, as I don't know much about medications I haven't tried. It really helped empower me to know that I wasn't just going to get what the doctor told me was going to help, but wit explained why it helps too. I'm very much a "why" person. You can't just tell me that I need to do or take something because you're the doctor and you know better. I have to know your reasoning behind it.
I also met with a physical therapist who worked on positioning and posture with me. I found this very helpful. I know my posture is bad, I just don't know how to fix it. She also gave me exercises to do at home daily, and orders for when I return home for a physical therapist.
I also had my first biofeedback session today. Now at first I was really confused by it. They hook you up to a computer using something like an EKG machine. It reads various bodily functions such as temperature and tension in different parts of the body. Once I got hooked up I was to use some exercises to get my body to relax, which would show the level of tension on the screen. At first I had no idea what I was doing, but after a while I got the hang of it. Basically it reads a level of tension and you triangle your body to release that tension.
Today was great because I got to FaceTime with both my husband and my daughter. I miss them so much. I think my daughter is finally realizing something is off because she hasn't seen me in a few days. I do know that she is being well cared for while I am gone, and I am truly thankful for that.
I also met with a physical therapist who worked on positioning and posture with me. I found this very helpful. I know my posture is bad, I just don't know how to fix it. She also gave me exercises to do at home daily, and orders for when I return home for a physical therapist.
I also had my first biofeedback session today. Now at first I was really confused by it. They hook you up to a computer using something like an EKG machine. It reads various bodily functions such as temperature and tension in different parts of the body. Once I got hooked up I was to use some exercises to get my body to relax, which would show the level of tension on the screen. At first I had no idea what I was doing, but after a while I got the hang of it. Basically it reads a level of tension and you triangle your body to release that tension.
Today was great because I got to FaceTime with both my husband and my daughter. I miss them so much. I think my daughter is finally realizing something is off because she hasn't seen me in a few days. I do know that she is being well cared for while I am gone, and I am truly thankful for that.
My trip to the Diamond Headache Clinic
So since the migraine infusion did not work, I searched for further options to help my migraines. My husband and I met with the doctor for about an hour. Let me just first say, at first sight of the clinic I wondered if I was making a mistake. The receptionists were not very welcoming, but I attributed that to having the Chicago attitude. Once they took me back they asked for a urine sample, which surprised me. The physicians assistant told me they always do a drug screening for new patients. This wasn't an issue as I haven't taken anything, but it was still odd.
The doctor came in and did an incredibly thorough history of prior medical diagnoses and current symptoms/complaints. The words from his mouth let me breathe a sigh of relief.
"You have no quality of life."
It was so validating to see that I was not crazy for the way things are. He asked me if I was prepared to stay in the hospital, and I told him I absolutely was ready. The office had to call my insurance to get everything squared away, but there was some back and forth between them to get me admitted. The doctors told me they wouldn't know until the next day if my insurance approved it and it was my choice if I should wait until approved or to just check into the hospital and at least start treatment until it can get approved. I decided that I was going to check in. I came all this way and wasn't going to miss a chance to get better. Besides, it is alwasys easier to ask for forgiveness than permission.
After I got checked in to the Diamond Headache Unit at St. Joseph's hospital they immediately started to try to get me some relief. They shot me full of methadone and an anti-nausea medicine. the medicine made me pretty drowsy, so I don't remember much. They did start the DHE therapy as well. Throughout the stay I got a total of nine DHE treatments which were supposed to break the cycle of rebound headaches.
Now, at first I was terrified to be there, and I am so glad my husband stayed with me that night. The room is incredibly small. It is also very outdated - sometimes the bed doesn't work, and it's just so bland. Maybe I'm spoiled on glamorous hospitals after delivering at IU North (which is nicknamed the Ritz Charles of the hospital world). But it was just scary to be there. I did however get over the appearance. I do share a bathroom with a neighbor, and there is also a shower available in the joining hallway. Side note - if you stay and plan on showering, bring your own bath towel. Their large towels could not wrap around my body!
The next morning my husband and I attended an orientation class that just got us acclimated for my stay. It was very nice to have, because I was nervous and didn't know what to expect. A psychologist also came in to talk to me about my mental health and the toll my headaches/migraines were having. He recommended to go to the support group that was going to gather a few hours later and also some local people I could work with when I returned home. I didn't make it to group therapy because the medicine knocked me out, but I do plan of contacting one of the therapists for more help when I get home.
I spent much of my second day sleeping due to the meds. My husband went home (Although he really wanted to stay, I kicked him out because I wanted to focus on my treatment, and I wouldn't be able to do that with him here.) I continued my DHE therapy that day also.
At this point I was very optimistic about my stay and had very wonderful nurses. I saw a little improvement, and felt like I was well taken care of.
The doctor came in and did an incredibly thorough history of prior medical diagnoses and current symptoms/complaints. The words from his mouth let me breathe a sigh of relief.
"You have no quality of life."
It was so validating to see that I was not crazy for the way things are. He asked me if I was prepared to stay in the hospital, and I told him I absolutely was ready. The office had to call my insurance to get everything squared away, but there was some back and forth between them to get me admitted. The doctors told me they wouldn't know until the next day if my insurance approved it and it was my choice if I should wait until approved or to just check into the hospital and at least start treatment until it can get approved. I decided that I was going to check in. I came all this way and wasn't going to miss a chance to get better. Besides, it is alwasys easier to ask for forgiveness than permission.
After I got checked in to the Diamond Headache Unit at St. Joseph's hospital they immediately started to try to get me some relief. They shot me full of methadone and an anti-nausea medicine. the medicine made me pretty drowsy, so I don't remember much. They did start the DHE therapy as well. Throughout the stay I got a total of nine DHE treatments which were supposed to break the cycle of rebound headaches.
Now, at first I was terrified to be there, and I am so glad my husband stayed with me that night. The room is incredibly small. It is also very outdated - sometimes the bed doesn't work, and it's just so bland. Maybe I'm spoiled on glamorous hospitals after delivering at IU North (which is nicknamed the Ritz Charles of the hospital world). But it was just scary to be there. I did however get over the appearance. I do share a bathroom with a neighbor, and there is also a shower available in the joining hallway. Side note - if you stay and plan on showering, bring your own bath towel. Their large towels could not wrap around my body!
The next morning my husband and I attended an orientation class that just got us acclimated for my stay. It was very nice to have, because I was nervous and didn't know what to expect. A psychologist also came in to talk to me about my mental health and the toll my headaches/migraines were having. He recommended to go to the support group that was going to gather a few hours later and also some local people I could work with when I returned home. I didn't make it to group therapy because the medicine knocked me out, but I do plan of contacting one of the therapists for more help when I get home.
I spent much of my second day sleeping due to the meds. My husband went home (Although he really wanted to stay, I kicked him out because I wanted to focus on my treatment, and I wouldn't be able to do that with him here.) I continued my DHE therapy that day also.
At this point I was very optimistic about my stay and had very wonderful nurses. I saw a little improvement, and felt like I was well taken care of.
Saturday, May 4, 2013
Migraine infusion recap
Today I completed my third and final day of the migraine infusion. I must say I'm not impressed. I'm still in pain and my hips/back/kidneys are on fire. I know I look a hot mess, so please excuse my crazy hair. It's late and I'm tired and in pain.
I'm just looking forward to Chicago on Tuesday and my trip to the Diamond Clinic. I'm really hoping I can get some answers.
I'm just looking forward to Chicago on Tuesday and my trip to the Diamond Clinic. I'm really hoping I can get some answers.
Migraine infusion started
So my doctor finally decided to find a medication that my insurance would approve. It was solu medrol, or a cortosteroid that is supposed to help migraines. I did three days of treatment in an outpatient center. I would get hooked up to an IV each day and would just get the infusion for about two hours. I decided it would be easier to do a video blog and get all my thoughts out instead of writing. Hope you find it informative.
Here is day one:
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