While I didn’t go to the psycho this week, something of importance did happen. On 11/Jan, a headache cycle that had been building since Christmas finally came to a head; and what a glorious head it was. On the 10th, the headaches gained intensity, but didn’t really spike all that much. They stayed between a 6/7 for the most part, but the meds weren’t really helping. The next morning, I felt like staying home, but I didn’t want to cancel on the psycho, so I went. I was in obvious distress as the morning started out with 5/6 right off the bat. I had to take a Soma just to get though. (You really can’t do the EMDR with muscle relaxers on board.) So we just talked. I even talked to her about going to the ER. I also had to wait until Safeway came to deliver my groceries. Of course they didn’t come until almost 19:30. By 12:00, the clusters were spiking every 15 minutes at a solid 10 or better. The baseline headache did not go under 8 at any point. It was something like 10 for 5 minutes, fall to 8/9. The day before, they spiked every hour to half hour, but not as badly. By the time the groceries came, I was a hot mess.
I tried to get Major, my friend who lives down here, to come get me to take me to Mayo, but, let’s say, there were issues. I grabbed an Uber and went straight to the ER. I couldn’t tolerate the pain any longer. It had to end somehow. The Uber driver was even nice enough to walk me to the door just to make sure that I was ok. I went through triage, registration and I think I waited painfully for about an hour before they called me back. At first, I was on a bed in the hallway bc all of the rooms were full, but I didn’t mind. They did vitals and all of that. The nurse took my story and then the ER doc came back and asked what she could do for me. I just said to make the pain stop. She called the neuro on call. By that time, I was incoherent. I told her the story as best as I could and she said to let her make another call.
They moved me into a room. (I have yet to have any medication, but they are trying to make me as comfortable as possible without it. They didn’t want to give me anything narcotic that might change my brain chemistry, or something like that. It was 23:30. By this time, I know I’m not going home. The neuro came back with a friend from the headache division to ask more questions. (I’m still fairly incoherent.) I answered the ones about the clusters and about the seizures. I had one while in the ER. They told me that I would be admitted and that they were just waiting on a bed. (Everything is a process there.) They gave me 50mg of Benadryl along with 80mg of Toradol in an IV drip along with saline. I asked them what the 50mg of Benadryl were supposed to do. I guess that the industry standard. They refused to budge. They couldn’t believe I could even tolerate 50mg and n0t be asleep. I finally got to my room around 1:30, I think.
More questions. Similar to DHC, I was asked all sorts of questions by a very nice nurse. The Benadryl+ IV was still hung, so I didn’t mind. I answered as best as my confused mind allowed. When asked my medications, I gave them my phone. There was absolutely no way I could’ve remembered them in that state. After the nurse, 2 more neuros. More questions. I evidently told the same story over and over again. They were satisfied. I must have dozed off somewhere around 4:30 because when I woke, my breakfast was sitting on the tray next to me. The nurse came back in and plugged a couple of leads that had come off of the wireless heart monitor that I had to wear back in. They don’t wake you. They let you sleep.
More questions, more neuros and headache specialists, seizure alarm goes off, between the narcolepsy and that new thing. They did a complete change in my drug routine. They withheld the Provigil completely. (That’s what keeps the narcolepsy at bay.) They wanted me to sleep to try to start repairing 37 years of damage. I was locked in my bed with the little alarm thing and had to call the nurse every time I wanted to get up or needed to go to the bathroom. They were not annoyed. They were happy to do it. I was given special socks to wear that I was allowed to bring home. The only thing I found really odd was that they measure your pee. They don’t test it. You have to pee in a urinal each time so that they can measure it. It was kind of weird at first, but you get used to it. Everyone was happy to do whatever they could and apologized if they couldn’t get to you the second you hit the button. They didn’t ask your pain level every three minutes and they always asked if there was something they could do for you like bring water or snacks, etc. The CNAs are trained to give medications, sponge baths and change your bed every day. Nothing is an effort to them. They are there to make you comfortable. You are the one in pain.
MRI/MRA normal, EKG normal. Team says to start DHE. There was always one doc that showed up in the morning and the head neuro would show up in the evening to explain what was going to happen. Everything was timed around the DHE. A half hour before, I would get the Zofran, Toradol and Benadryl. A half hour later, the DHE, only it wasn’t a bag, it was IV. Two minutes, nothing. I wasn’t laying there for two hours while the stuff turned me into a raging monster as some of you have seen (especially during the second round.) Meanwhile, I’m burning though IV sites. I finally have to get a PICC. It’s done at bedside. I don’t have to go to the Cath Lab. Right after the PICC line goes in, another nurse comes in to do the nerve blocks. They hurt. Super Orbital-both sides/Occipital-both sides. I go for botox tomorrow. All of this is done bedside. The only drawback was that I wasn’t allowed to roam around freely. (Fall risk)
Really, this is a preliminary comparison. I think I’d need another stay at Mayo to really see the difference, but some things stood out that were pretty clear to me.
- The team approach: I was part of the neurological, headache, medical team. They met every day to review my case and decide where to go. They kept me informed of their decisions and allowed me to voice my opinions.
- The team approach, while slow at first, allows them to adapt to situations more rapidly as they have taken more variables into account.
- Bedside care v. going all over the place to have procedures done. At DHC the nerve block and botox aren’t done in the hospital bc St. Joseph’s will not give the DHC docs rights to perform procedures in the hospital, thus emasculating them.
- I was on a surgical floor, but the nurses were cross-trained. Even the floaters knew how to deal with headache patients and would ask questions so that they could learn more. I’ve had to teach floating nurses how to program the IV box, I’ve gotten two fired, two CNAs fired and three nurses/CNAs assigned to other floors. We’re not even going to talk about Team India.
- Transportation to and from different parts of the hospital is much more efficient at Mayo.
- The level of customer care from triage to registration through discharge is excellent. People at Mayo seem very happy to do their jobs.
- The use of IV injected DHE for me was much more effective than IV drip.
- DHC is slow and resistant to change.
- DHC, however, has the different classes and activities.
- DHC allows you to roam freely around the unit. There are units where this is possible. I just wasn’t on one of them.
- Many DHC staff members both at the clinic and inpatient seem to simply be going through the motions. They’ve either burnt out or it’s become too routine for them.
- The food sucks at both sites!
- TV is better at Mayo. They don’t have the religious affiliation thing going.
I was in and out of the hospital here in 5 days and since then, I’ve only had a handful of clusters and migraines break out. I left Mayo with a 3-solid 3. (Maybe even a 2/3 if I’m feeling optimistic) That hasn’t happened at DHC in eons and in less than half of the time. I don’t know how long the blocks will hold, but I’m willing to give this route a try before going back to Chicago.
cazandoconejos 