Today was my first day on my own in a long day. My girlfriend was with my for the entire day, but I was still sans parents. I got out of the hospital yesterday, the headache has come back, and I am just feeling overwhelmed in general. I have to be going back into the world and I am not exactly sure how to do that.
I felt not great waking up, and I fell back asleep. I felt much better when I woke up. I dropped prescriptions off at the pharmacy and went to the grocery store after I woke up.
I came home and took a bath, to make me feel a little less stressed and a little less agitated. I also took some Benedryl, hoping to counteract the effects of the Compazine I had taken the previous night.
I ran some more errands, mostly looking for things for people for Christmas, since I am behind on that, and I thought getting out might make me feel a little better. It did.
I stopped at the pharmacy on the way home. They were only able to fill two of my four prescriptions, because they don't have DHE or Droperidol. I went to another pharmacy, and they need to order it. So I need to make sure to take it in plenty of time for it to be ordered, and not let it get to low. No calling it in and picking it up the same day for me. This is one of the irritations I am learning about having migraines. A lot of medications aren't particularly common so you need to track them down.
AM vitamins taken, PM meds taken. 2 Benedryl taken.
Tuesday, December 7, 2010
Sunday 12/5/2010
Had some trouble sleeping last night, I think partially from falling asleep so early and partially from thoughts about possibility of leaving today. Requested Ambien to help me sleep and it did, from about midnight to 4:30 this morning, when they came to draw blood, although I was already awake.
I eventually gave up on sleeping around 6, and my doctor came in at 6:30. Since my pain level was still a 0, I was able to go home! I had to wait for a bunch of things, but still, I was able to go home.
The second doctor came in to agree to me being able to leave around 7:15. I was told to call tomorrow to schedule a follow up appointment with my primary neurologist, and that I would probably get an appointment within two weeks. After that I took a walk around the wing, which took me about 15 minutes, but still got me out of the room and moving, and requested to take a shower.
I had to have my PICC line taken out, which the doctor had to do. That really wasn’t too bad though, it was a lot like having a long string pulled out of you. It looked kind of like that too.
My discharge directions are to increase my Topamax by 25mg every 2 weeks until I reach 200 mg. Also, Compazine has been changed to Droperidol, which I am very happy about, and Nabumatone has changed to Naproxen. Other than that my daily meds stay the same and life continues on as normal. I am supposed to take it easy for a few days and not do anything that might bring the headache back, which is what I have planned to do anyway.
So, upon leaving the hospital my newly updated med list, including vitamins and supplements is:
AM Medications
Riboflavin (B2) 2 100 mg (200 mg)
Vitamin C 1 240 mg
Multivitamin Chewable wafer
Omega Fish Oil 2 1000 mg
Vitamin D 1 5000 mg
Iodine Plus-2 1 12.5 mg
Magnesium 1 100 mg
Progest50 2 50 mg days 15 through 28 of cycle
Petoladox Butterbur 1 50 mg
Afternoon Medications
Magnesium 1 100 mg
Petoladox Butterbur 1 50 mg
PM Medications
Lorazapam 1 0.5 mg
Nexium 1 40 mg
Fluoxetine 1 10 mg, 1 20 mg (30 mg)
Topamax 1 100 mg, 1 25 mg (125 mg)
Verapamil 2 40 mg (80mg)
Riboflavin (B2) 2 100 mg (200 mg)
Vitamin C 1 240 mg
Omega Fish Oil 2 1000 mg
Magnesium 1 100 mg
Petoladox Butterbur 1 50 mg
PRN Medications
Toradol (30mg/mL) as needed for migraines
Naproxen (550 mg) as needed for migraines
Droperidol (2.5 mg/mL) as needed for migraines)
DHE (1 mg/mL) as needed for migraines
Zyprexil (2 mg) as needed for migraines
A great list of meds. Thankfully a lot of them are supplements and vitamins that I take. Most of them aren’t prescriptions. Although counting I do have ten prescriptions; that is a lot for one person, particularly a twenty-two year old to have. And all of them are for the migraines, except for the Nexium.
I came home, and was feeling great. I went out with my dad to run some errands, and the migraine started to come back. It was at a one or a two for a majority of the errands, but began to be more like a three as we were at the house having dinner. It felt like the muscles in my neck were tensing and causing the headache.
I did my Posture Pump, hoping that would maek me feel better and that had very minimal results. It was decided that perhaps coming back to my apartment (I was at my parents) would make me feel better, give me something to do, that sort of thing) and so I packed for and went to my apartment. I got everything into my apartment.
Through the course of the evening my headache rose up to a 7. I used DHE, compazine, and nambumatone. I didn't have a chance to go to the pharmacy to get the droperidol or naproxen yet.
I took my PM meds and went to bed feeling utterly defeated.
I eventually gave up on sleeping around 6, and my doctor came in at 6:30. Since my pain level was still a 0, I was able to go home! I had to wait for a bunch of things, but still, I was able to go home.
The second doctor came in to agree to me being able to leave around 7:15. I was told to call tomorrow to schedule a follow up appointment with my primary neurologist, and that I would probably get an appointment within two weeks. After that I took a walk around the wing, which took me about 15 minutes, but still got me out of the room and moving, and requested to take a shower.
I had to have my PICC line taken out, which the doctor had to do. That really wasn’t too bad though, it was a lot like having a long string pulled out of you. It looked kind of like that too.
My discharge directions are to increase my Topamax by 25mg every 2 weeks until I reach 200 mg. Also, Compazine has been changed to Droperidol, which I am very happy about, and Nabumatone has changed to Naproxen. Other than that my daily meds stay the same and life continues on as normal. I am supposed to take it easy for a few days and not do anything that might bring the headache back, which is what I have planned to do anyway.
So, upon leaving the hospital my newly updated med list, including vitamins and supplements is:
AM Medications
Riboflavin (B2) 2 100 mg (200 mg)
Vitamin C 1 240 mg
Multivitamin Chewable wafer
Omega Fish Oil 2 1000 mg
Vitamin D 1 5000 mg
Iodine Plus-2 1 12.5 mg
Magnesium 1 100 mg
Progest50 2 50 mg days 15 through 28 of cycle
Petoladox Butterbur 1 50 mg
Afternoon Medications
Magnesium 1 100 mg
Petoladox Butterbur 1 50 mg
PM Medications
Lorazapam 1 0.5 mg
Nexium 1 40 mg
Fluoxetine 1 10 mg, 1 20 mg (30 mg)
Topamax 1 100 mg, 1 25 mg (125 mg)
Verapamil 2 40 mg (80mg)
Riboflavin (B2) 2 100 mg (200 mg)
Vitamin C 1 240 mg
Omega Fish Oil 2 1000 mg
Magnesium 1 100 mg
Petoladox Butterbur 1 50 mg
PRN Medications
Toradol (30mg/mL) as needed for migraines
Naproxen (550 mg) as needed for migraines
Droperidol (2.5 mg/mL) as needed for migraines)
DHE (1 mg/mL) as needed for migraines
Zyprexil (2 mg) as needed for migraines
A great list of meds. Thankfully a lot of them are supplements and vitamins that I take. Most of them aren’t prescriptions. Although counting I do have ten prescriptions; that is a lot for one person, particularly a twenty-two year old to have. And all of them are for the migraines, except for the Nexium.
I came home, and was feeling great. I went out with my dad to run some errands, and the migraine started to come back. It was at a one or a two for a majority of the errands, but began to be more like a three as we were at the house having dinner. It felt like the muscles in my neck were tensing and causing the headache.
I did my Posture Pump, hoping that would maek me feel better and that had very minimal results. It was decided that perhaps coming back to my apartment (I was at my parents) would make me feel better, give me something to do, that sort of thing) and so I packed for and went to my apartment. I got everything into my apartment.
Through the course of the evening my headache rose up to a 7. I used DHE, compazine, and nambumatone. I didn't have a chance to go to the pharmacy to get the droperidol or naproxen yet.
I took my PM meds and went to bed feeling utterly defeated.
Saturday12/4/2010
Woke up with still a 0 pain in my head. Doctor came in early and was pleased to hear this. She said that likely if I am still feeling well I could be out tomorrow, with my Topamax increased, and another diuretic (I forget the name of it) added to my list of prescriptions.
I got my AM meds, again only a multivitamin and Lovanox, and I have Progesterone that I take on my own.
When I got my breakfast I got for the second day a diabetic menu, and I was not given the apple juice I ordered. It was crossed out and “1800” was written on the top of my menu. So I am wondering if I am indeed supposed to get the diabetic menu.
At around 12:15 my girlfriend got there, and she stayed for the majority of the day. We walked around the floor a couple of time, which getting up and walking around was good and made me feel a little less stir crazy each time we did it. If anyone ever stays in the hospital and has the opportunity to walk around while they are they, I strongly recommend it.
I am not able to shower really because of the Lidocaine. I am not able to be disconnected from it for more than 15 minutes and so showering is difficult. Therefore I don’t know why people are willing to be close to me anymore.
The rest of the day was pretty standard; get my regimen, that sort of thing. I fell asleep early, like 6:30.
I got my AM meds, again only a multivitamin and Lovanox, and I have Progesterone that I take on my own.
When I got my breakfast I got for the second day a diabetic menu, and I was not given the apple juice I ordered. It was crossed out and “1800” was written on the top of my menu. So I am wondering if I am indeed supposed to get the diabetic menu.
At around 12:15 my girlfriend got there, and she stayed for the majority of the day. We walked around the floor a couple of time, which getting up and walking around was good and made me feel a little less stir crazy each time we did it. If anyone ever stays in the hospital and has the opportunity to walk around while they are they, I strongly recommend it.
I am not able to shower really because of the Lidocaine. I am not able to be disconnected from it for more than 15 minutes and so showering is difficult. Therefore I don’t know why people are willing to be close to me anymore.
The rest of the day was pretty standard; get my regimen, that sort of thing. I fell asleep early, like 6:30.
Friday 12/3/2010
I woke up today around 7:00. I slept well, despite being woken up throughout the night for various things. “We needs to take your vitals.” “We need to draw blood.” At midnight I got another round of my “regimen” which is the Benedryl, Driperidol, the anti-emetic, DHE, Toradol, magnesium, in that order. Also someone came in around 4:30 I believe to draw blood for some test. At 4:30 I wasn’t really that aware of what they were drawing blood for.
Lidocaine can make you have very vivid dreams and can make you hallucinate. At this point I was not hallucinating, but I was having vivid dreams that were extremely realistic. Not that it was a bothersome experience though. I don’t remember the dream particularly; just that it was very realistic.
Once I was awake I watched some Charmed. I am able to have my laptop with me in the hospital, obviously, if I am able to type this blog. Eventually my breakfast came; it was the wrong breakfast, but that was okay; there was oatmeal and that was all I really wanted anyway. My am meds were merely a multivitamin and Lovanox, which is a blood thinner so I don’t get blood clots from staying in bed so much and from the IV meds they are giving me,
At 11:00 was a group therapy class. First we discussed what it is like having migraines, just giving us an opportunity to talk with fellow people who know what it is like and share a common ailment. Then we did a relaxation exercise, similar to mediation. I am not sure if it helped me or not, it was hard to tell, there were a lot of distractions in the room so I am not sure I got the full benefit.
My mom and girlfriend came to visit around 1:00. I talked to them and spent time with them. I walked around the floor with my girlfriend, which only took about 15 minutes, then came back, but felt much better from getting out and walking around, not just sitting in my room.
Later in the day I had a lumbar puncture, or spinal tap. My mom and girlfriend had to leave the room, and two doctors came into my room and did the procedure. They were extremely nice the whole time. The procedure took longer than they expected, but really wasn’t as bad as I expected. A lumbar puncture consists of the doctor checking the spinal fluid, and checking the pressure of the spinal fluid (http://www.medicinenet.com/lumbar_puncture/article.htm). Mine was minimally high, approximately 20, and they removed spinal fluid to bring the pressure down to a 12. Twenty is not high enough that they would generally treat this, unless I got significant relief from the lumbar puncture.
I didn’t think I did get significant relief, until about five or ten minutes later, when I was lying on my back (I was required to lie flat on my back for one hour after the lumbar puncture), and I realized my headache was down from a 5 to a 2. My mom ran out and told the doctors and they are going to tell my primary doctor and take this into consideration.
Later, my mom had left, my girlfriend was still here, and another friend was visiting, and I realized, I think I had no pain in my head. I am not sure, as it has been about 10 years since that has happened. But I think for the first time in 10 years, I am pain free!
I got PM meds, Lorazapam, Fluoxetine, Nexium… I think that’s it.
Lidocaine can make you have very vivid dreams and can make you hallucinate. At this point I was not hallucinating, but I was having vivid dreams that were extremely realistic. Not that it was a bothersome experience though. I don’t remember the dream particularly; just that it was very realistic.
Once I was awake I watched some Charmed. I am able to have my laptop with me in the hospital, obviously, if I am able to type this blog. Eventually my breakfast came; it was the wrong breakfast, but that was okay; there was oatmeal and that was all I really wanted anyway. My am meds were merely a multivitamin and Lovanox, which is a blood thinner so I don’t get blood clots from staying in bed so much and from the IV meds they are giving me,
At 11:00 was a group therapy class. First we discussed what it is like having migraines, just giving us an opportunity to talk with fellow people who know what it is like and share a common ailment. Then we did a relaxation exercise, similar to mediation. I am not sure if it helped me or not, it was hard to tell, there were a lot of distractions in the room so I am not sure I got the full benefit.
My mom and girlfriend came to visit around 1:00. I talked to them and spent time with them. I walked around the floor with my girlfriend, which only took about 15 minutes, then came back, but felt much better from getting out and walking around, not just sitting in my room.
Later in the day I had a lumbar puncture, or spinal tap. My mom and girlfriend had to leave the room, and two doctors came into my room and did the procedure. They were extremely nice the whole time. The procedure took longer than they expected, but really wasn’t as bad as I expected. A lumbar puncture consists of the doctor checking the spinal fluid, and checking the pressure of the spinal fluid (http://www.medicinenet.com/lumbar_puncture/article.htm). Mine was minimally high, approximately 20, and they removed spinal fluid to bring the pressure down to a 12. Twenty is not high enough that they would generally treat this, unless I got significant relief from the lumbar puncture.
I didn’t think I did get significant relief, until about five or ten minutes later, when I was lying on my back (I was required to lie flat on my back for one hour after the lumbar puncture), and I realized my headache was down from a 5 to a 2. My mom ran out and told the doctors and they are going to tell my primary doctor and take this into consideration.
Later, my mom had left, my girlfriend was still here, and another friend was visiting, and I realized, I think I had no pain in my head. I am not sure, as it has been about 10 years since that has happened. But I think for the first time in 10 years, I am pain free!
I got PM meds, Lorazapam, Fluoxetine, Nexium… I think that’s it.
Thursday12/2/2010
Can only send mediocre blogs from my phone. Day on at the hospital was long, a lot of waiting. I got to the hospital around 11:00 am. I registered and was admitted. Then I was taken to a room that is on the same floor as the headache wing, but not the headache wing itself. Waited there for a while, answered some intake questions, and then was transferred to my room around 3:30. After waiting a bit, I was taken a couple floors down and a PICC line was put in (http://picclinenursing.com/picc_why.html). This is essentially a longer IV that goes straight to the central circulatory system. It’s a little friendlier to your veins and a little more durable. I talked to some doctors and they want to do a spinal tap. Not the band. The spinal tap will check the pressure of spinal fluid. If there is too much pressure, this could be the cause of the headaches. A spinal tap will both a) tell us this and b) help relieve the headache by removing the excess fluid if there is indeed too much pressure. Interesting.
Through the PICC line I was given continuous Lidocaine, and then Benedryl, DHE, normal Saline to keep my vein open, Toradol, Magnesium, and an anti-emetic that I have not had before and quite honestly forget the name of. But it does not give me the side effects that Compazine or Thorazine gives me (restlessness and that sort of thing, wanting to crawl out of my skin, going crazy).
An amusing story… because my room was changed they did not give me dinner; so the nurse had to track down something for me to eat. She managed to find a turkey sandwich, some pretzels and pudding for me. The DHE was making me feel quite sick so I ended up eating only the pretzels and the pudding. Who can’t eat pudding even if they are feeling sick?
My mom stayed with me for the majority of the day, she left at about 6:30, and I am glad she stayed. My brother arrived to visit at about 6:00 and stayed until about 8:15, which was very nice. He found it interesting how many times they took my blood pressure; at least 5 times while he was here.
Through the PICC line I was given continuous Lidocaine, and then Benedryl, DHE, normal Saline to keep my vein open, Toradol, Magnesium, and an anti-emetic that I have not had before and quite honestly forget the name of. But it does not give me the side effects that Compazine or Thorazine gives me (restlessness and that sort of thing, wanting to crawl out of my skin, going crazy).
An amusing story… because my room was changed they did not give me dinner; so the nurse had to track down something for me to eat. She managed to find a turkey sandwich, some pretzels and pudding for me. The DHE was making me feel quite sick so I ended up eating only the pretzels and the pudding. Who can’t eat pudding even if they are feeling sick?
My mom stayed with me for the majority of the day, she left at about 6:30, and I am glad she stayed. My brother arrived to visit at about 6:00 and stayed until about 8:15, which was very nice. He found it interesting how many times they took my blood pressure; at least 5 times while he was here.
Sunday, December 5, 2010
Friday, December 3, 2010
Day One Down... day one
Day One Down... day one at the hospital is down and it really was not not too bad. it was a lot of waiting.
Wednesday, December 1, 2010
Wednesday 12/1/2010:8.5
~ Happy Birthday Alex! ~
Last night was not a good night. I woke up in the middle of the night a couple of times. The first time was to throw up, which did not make me feel better, like actually vomiting can sometimes do. Because of the vomiting, I didn't wear my bite plate (http://www.doctorsnightguard.com) that I normally do wear, and this risks having a greater headache. I woke up with my headache at an 8, which isn't too bad for not having it in for a majority of the night.
The second time was because of a very bad dream, that I don't remember. I believe it was someone breaking into the house, because then I heard my dog moving around downstairs and was convinced someone was in the house. These dreams are relatively common for me, but my anxiety level is raised these days and I needed to go get my mom like a little kid and have her sit with me. So cool. I woke up every few hours and managed to go back to sleep until 8:15 when I woke up for good.
I am starting a somewhat new regimen today (http://www.progest50.com/superfour.htm). It includes taking
I had a Carnation Instant Breakfast because I wasn't really in the mood for any solid foods, and I took a bath. I packed and got everything ready for the hospital. I got a phone call from the hospital that I should arrive at 11 tomorrow to be admitted. I need to take a list of my current medications, and take medications that the pharmacy likely will not have; I will take all of them just to be on the safe side and my mom can take them back with her when she leaves. I also need to take a headache calendar for at least the last week; supposedly there was one in the admissions folder I got the last time I was at the headache center, however there was not. So it's a good thing that I have been keeping a headache journal that my girlfriend created for me anyway.
I spent a majority of the day on the couch, watching TV. I watched a movie and then watched what was on TV. I ate some rice pudding and some Honeycombs. I took another bath, because I was sore all over, and soaking in the bath helped that.
For dinner I had noodles with turkey gravy. I was coerced into staying up until 7:30, although I wanted to go to bed around 7; I was very tired all day.
AM vitamins taken, afternoon vitamins taken in the evening, PM meds taken with a Zyprexa.
Last night was not a good night. I woke up in the middle of the night a couple of times. The first time was to throw up, which did not make me feel better, like actually vomiting can sometimes do. Because of the vomiting, I didn't wear my bite plate (http://www.doctorsnightguard.com) that I normally do wear, and this risks having a greater headache. I woke up with my headache at an 8, which isn't too bad for not having it in for a majority of the night.
The second time was because of a very bad dream, that I don't remember. I believe it was someone breaking into the house, because then I heard my dog moving around downstairs and was convinced someone was in the house. These dreams are relatively common for me, but my anxiety level is raised these days and I needed to go get my mom like a little kid and have her sit with me. So cool. I woke up every few hours and managed to go back to sleep until 8:15 when I woke up for good.
I am starting a somewhat new regimen today (http://www.progest50.com/superfour.htm). It includes taking
- 100 mg of Magnesium three times a day
- 12.5 mg of Iodine once a day
- 5000 mg of Vitamin D once a day
- 2000 mg of Fish Oil twice a day
- 100 mg of Progesterone once a day on days 15-28 of my cycle
I had a Carnation Instant Breakfast because I wasn't really in the mood for any solid foods, and I took a bath. I packed and got everything ready for the hospital. I got a phone call from the hospital that I should arrive at 11 tomorrow to be admitted. I need to take a list of my current medications, and take medications that the pharmacy likely will not have; I will take all of them just to be on the safe side and my mom can take them back with her when she leaves. I also need to take a headache calendar for at least the last week; supposedly there was one in the admissions folder I got the last time I was at the headache center, however there was not. So it's a good thing that I have been keeping a headache journal that my girlfriend created for me anyway.
I spent a majority of the day on the couch, watching TV. I watched a movie and then watched what was on TV. I ate some rice pudding and some Honeycombs. I took another bath, because I was sore all over, and soaking in the bath helped that.
For dinner I had noodles with turkey gravy. I was coerced into staying up until 7:30, although I wanted to go to bed around 7; I was very tired all day.
AM vitamins taken, afternoon vitamins taken in the evening, PM meds taken with a Zyprexa.
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