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Lizzie2
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Infusion Center and Clusterheads...
« on: Apr 8th, 2007, 12:41am » |
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WARNING: The following story is rather long, but I haven't posted anything super long in awhile so bear with me!! It's a great story that I think most here can relate to!!! Hugz... xoxo
Hi y'all,
First off, Happy Easter to all who celebrate! I wanted to write a post about an interesting experience I had this week which reminded me of how thankful I am that we have each other...and also what a small world it is sometimes! I've been having some really bad times with the migraines for the past several weeks (well...it never goes away, but the average for me has been at high levels and it's been difficult for me to function), and the clusters have continued on my status quo (for the past few months) of 3-6x/day, which I know is really probably average compared to what others suffer. But at any rate, I feel like I've been going to the headache center (at Jefferson) practically every week this month. I went for a regular monthly appt with the nurse practitioner a few weeks ago, and I was having a really rough time - broke down in tears 3 times in the appt, which totally is not like me. Even when I'm in a lot of pain, I rarely let it get to me where I start crying in front of other people! I think I was just overtired and feeling strung out....
That particular appt, she gave me something like 16 nerve block injections in the face and head...and while I've had those dozens of times before and tolerated them just fine, on that day the actual injections seemed like more pain than I could take. Almost like it just sent my pain level over the top just by getting the needles, and that's one of the times I started breaking down. The NP and I had discussed going up on one of my meds that sort of seems to help, but when she discussed it with my neuro, he decided instead that he didn't want me to go up on that until I tried some other things first, just mainly due to side effects and some other reasons. So I felt kinda like I was having to jump through hoops as one of the things he wanted me to do was increase the mexiletine I've been on preventatively, which is sort of like lidocaine in a pill form, but I had tried to increase it for a month prior and it always makes me so nauseous. It always frustrates me when he wants me to do something that I've already tried unsuccessfully to do! He also wanted me to come back for more nerve block injections within a couple of weeks, and he wanted me to come in for 3 days of the outpatient infusions whenever I had a slew of days off work so I wouldn't have to miss as much. I still haven't been able to increase the mexiletine (but not for lack of trying!), and I did go back after about a week and a half and got more nerve blocks. The first time this month, I think they helped some, but the 2nd time, I didn't seem to get any benefit from them - I had terrible attacks that night.
So then finally this past week, I was only scheduled to work Wednesdsay as I'd worked the weekend prior, so I went in for infusion. Normally for infusion, I get IV fluids (for rehydration), reglan (for nausea), DHE (our favorite vasoconstrictor), magnesium, cogentin and ativan (those 2 for the restlessness caused by some of the other meds and to sleep through the infusion), depacon (IV depakote/valproic acid), and toradol (powerful anti-inflammatory that actually does seem to help me on some level). Most other people get the solumedrol, but I can't have that due to the avascular necrosis. I also can't have benadryl since I'm allergic to it - but lots usually get that, too. The other meds they can do are thorazine (ugh....) and/or droperidol, but I didn't get either of those. Never sure exactly how they pick who gets what meds - maybe just by looking back in our charts to see what worked best in the past. But the infusions consist of 3 days (max) of going to this outpatient infusion center mainly designed for cancer patients, and staying there from around 8am-2:30pm or so. The day starts with seeing the nurse practitioner in the headache center to determine how things are going/what meds to receive...and then heading to infusion to get an IV and get started. In the morning, I get all of the meds listed, and then in the afternoon get a 2nd round of the reglan and DHE....I also get zofran for nausea because the DHE makes me sick. I last had the infusions for 2 days right before Christmas.
So I get down there on day 1, and I hear that one of the other 3 patients in the room is also a cluster sufferer. I won't elaborate on his info or cycle-related stuff here because it's not my story to tell, but yet again I was reminded what a small world it is... We talked a lot in the morning because his daughter is planning to go into nursing school. Also exchanged email addresses. He just gets clusters, so he was actually starting his day pain free, whereas I was in the baseline of migraine hell...but cluster free at the moment. I'd fallen asleep midmorning during my infusions, and then I awoke at one point hearing him open a box of the nasal spray DHE.
...continued...
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Lizzie2
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Re: Infusion Center and Clusterheads...
« Reply #1 on: Apr 8th, 2007, 12:42am » |
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...Part 2...
I looked over at him, and I knew instantly...I had this sick feeling in my stomach just seeing it in his face. It doesn't matter who we are, what we do for a living, how old we are, what gender we are, what we look like, etc - the way we look during a CH...I swear it's all the same. His right side of his face was tearing up, and he was congested. And I watched this gentleman who had been chatting with me calmly just a couple hours before, become so agitated he could hardly sit still. I gave him my own personal advice on not snorting the migranal (as it only absorbs through the nasal lining in the nasal spray form), and I suggested he ask the nurse for some O2 or something, since that helps him. I know he had a rough ride with the attack...and I was jumping out of my skin wishing there was something I could do. I think the other 2 patients in our infusion room (who did not have CH - but had other headache types) probably didn't even know what to make of it all. I switched seats with my fellow CH'er because I was sitting next to the only O2 flowmeter in the room...I had chosen that seat when I first walked in because last time I had infusions, I'd gotten an attack and needed the O2.
The best part was once he finally got relief - watching him relax and actually fall asleep with the O2 still on. He and I both discussed how it comes on faster than anything and goes away just as fast. And the pain is just simply indescribeable... Even though I've never met this man before, we bonded because we both knew what that pain was.... I was fortunate not to get a CH hit on day 1. Usually once I start getting the IV DHE, I do okay for a few days, but at Christmas time, I did get hit once on day 2 in the morning.
Unfortunately I was bound to repeat the same issue on day 2. My CH buddy was back again as well as a couple other non-CH'ers in our room. I will say that at the start of infusions on day 1, I was in constant level 9 pain from my migraine. I'm not talking kip 9 - but I'm talking how I rate my constant migraine on a 0-10 scale. (Please don't flame me on this one....it's been too long, and I don't need to be ripped to pieces for a migraine! thx!) By day 2, my migraine baseline had dropped to a 7 for me...so I was happy just to have the edge off it. I think the NP was shocked that I was so happy just to simply have dropped from a 9 to a 7...I guess most people have much higher expectations - but I'll take what I can get...and even just having the edge off is a huge help to me!!
But even as I was walking out of the office down to the infusion center, I felt the pangs above my right eye. I feel like when one starts to come on, I'm almost in denial at first. I will say that because of having such a bad migraine constantly, sometimes the earliest phases of the CH go unnoticed until it blasts up to a higher level and then feels like it explodes out the right side of my face....just above my eye and above the right half of my teeth and down the right side of my jaw. The infusion center opened at 8:30 on Wednesdsay instead of 8, and I got down there at right around 8:00, but had to wait to register. After registration, I had to actually go back out to the waiting room for about 10 minutes or so until they'd allow us to the room. My CH buddy saw how jittery I was getting. I told him that I was feelin one coming - I couldn't hardly sit still...felt my knee just bouncing...trying to burn off some of that energy from the pain. He asked if I couldn't just see if they could get me some O2 or ice - but I knew they wouldn't open the center early...and I got into that part of an attack where I feel like I can't even step outside my pain to ask for help...it becomes all-consuming and disabling. So by the time I got back to the infusion room, I was shaking like a leaf and having a hard time sitting in the chair.
...continued...
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Lizzie2
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Re: Infusion Center and Clusterheads...
« Reply #2 on: Apr 8th, 2007, 12:43am » |
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...Part 3...
My nurse was phenomenal...... She must've had CH patients before - and especially since the infusion center is used for headache patients daily as well as chemo patients. She came in with her pile of supplies to start my IV and get my vitals, and it was all I could do to try to tell her I was a cluster sufferer (she wasn't the nurse I'd had the day prior), and that I could really use some oxygen and ice packs. She immediately left the supplies, asked me what type of mask I use, and went and got the mask and 2 ice packs... After I was on the O2 for a few minutes, she asked if I wanted her to wait to start the IV...I was already coming down after even just 5 minutes on the O2 (thank God for a good response that morning!) though, so I said go ahead and get it started. The sooner she got the IV, the sooner I could get my meds and hopefully get some relief... She did ask if I wanted to lie back, and I said no way...not now - and she didn't even ask again. Even if clusters were slightly unfamiliar territory for her, she handled it so well - got me everything I needed quickly and really tried hard to get me comfortable and not do anything to make me feel worse.
I think there were like 6 patients total for headache infusion that day...they're only supposed to accept 6 on any given day (because of the chemo patient load, too), but I know one of the days they had 7... There are 2 rooms they can use for headache patients...our room had 4 of us in it, and then another room. So mid-morning, well after my attack is over, my nurse and another come in and say they need my flow meter. Wouldn't you know that another headache patient in the other room is also a CH'er and is getting hit and uses O2!! The nurses said they don't even get cluster patients that often - let alone 3 at once and all who get hit within a day of one another! I remarked how I think we're contagious to one another at times!! ha....
The next day, my first CH buddy didn't return for a 3rd day of infusion - he only needed 2 days. But the other CH guy ended up in my room in the chair across from me so we could both be near the O2. So we talked about CH (what little I remember - I was having a rough day on day 3 with nausea and some other side effects), and he said the O2 is a Godsend...
The 3 of us couldn't have looked any different from one another - 2 guys and a gal, different ages, different races, different places in our lives, different educational levels......but we were united by one thing: CLUSTER HEADACHES.... We all understood each other's pain, and without even needing to say a word, we knew what each other was going through....
Once again, it was such a powerful reminder. And I feel so blessed to have this community here. One of the 3 had been on the web before, but I don't think he really was into joining the site here - and the other didn't even use the computer at all. So I felt blessed to have such a wonderful support network of people who understand. As so many of us have said time and time again, there is NOTHING like meeting another clusterhead!!!
I had a rough time with the infusions in terms of nausea and vomiting, and I slept all day on Friday, but I haven't had another CH hit since Wednesday morning. Had a few shadows of one earlier today, but nothing major came. The migraine baseline dropped to a 4 for me by the end of Thursday. It's had a few moments of trying to rise above today as I had to drive from my apartment out to my parents' house to celebrate Easter weekend together, but on the whole, my head is better! Don't know how long it'll last, but it's worth it even to have a few days of reduced pain and no to few CH hits!
Sorry this is so long, but I wanted to share this story... Just a reminder of how lucky we are to have each other, even if we sure as hell aren't lucky to have CH. Hope everyone has a pain free and great weekend and, if you celebrate, a very happy, Pain free Easter!!!
Love,
Carrie/Lizzie2 
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E-Double
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Re: Infusion Center and Clusterheads...
« Reply #3 on: Apr 8th, 2007, 6:59am » |
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You rock!!!!
I hope you catch a break from the party in your brain 
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Sean_C
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Re: Infusion Center and Clusterheads...
« Reply #4 on: Apr 8th, 2007, 8:22am » |
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Things will get better Carrie, they always do 
Cheers,
Sean........................................
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Lizzie2
CH.com Alumnus
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"L'Chaim"~Hebre w Toast~"To Life"
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Re: Infusion Center and Clusterheads...
« Reply #5 on: Apr 8th, 2007, 4:15pm » |
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on Apr 8th, 2007, 8:22am, Sean_C wrote:Things will get better Carrie, they always do
Cheers,
Sean........................................ |
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They already have - that was the point of infusion! Well...in my life, there's a constant level of chaos that I've learned to accept - but then who doesn't put up with a certain level of things they don't particularly care for? I haven't been hit with a CH since Wednesday, so this is already better.
E-dub....Party in my brain... haha Is that sorta like those mucinex commercials where the gross disgusting germs are having a party in the person's lungs? They do have that image of a very similar-looking beast on the imitrex commercials, albeit they are referencing migraine. Now - in the mucinex commercials, the sufferer usually coughs or sneezes the germs out....wasn't Jasper's thought to sneeze the beast out or something like that? He might truly be onto something!
Hugz and PF wishes,
Carrie
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