Bridges

A brief timeline of recent events:

*Now Updated!*

May 19 - received Botox injections

May 20-23 - increase in head pain due to Botox shots

May 25, 27, 28, 30 - Migraine

June 1-2 - Migraine

June 3-5 - Haldol/Cogentin bridge, temporary pain relief

June 6-7 - return of Migraine

June 8 - call nurse's line, receive call back in afternoon, migraine continues

June 9-11 - Infusion (see previous posts for information)

June 11 - book inpatient stay at Methodist for first available day (June 30)

June 12-16 - Naproxen/Compazine bridge, migraine continues

June 15 - call nurse's line

June 17 (today) - call nurse's line, receive call back in afternoon, start new Haldol/Cogentin bridge

June 18-19 - migraine continues, sleep most of the day/night

June 19 - call nurse's line, receive call back. Start new bridge of Haldol/Cogentin and Sulindac

June 20 (today) - migraine continues

Bridge - taking a medications or group of medications as prescribed by a doctor for a short period of time in an attempt to break a cycle.

Cycle - a migraine or headache that does not end and resists medical intervention

I am currently in the middle of my forth bridge in less than five weeks. This particular bridge is aimed less at breaking the cycle (though it would be wonderful if it did) and more at keeping me somewhat comfortable until I can go inpatient at Methodist. It seems that, for me at least, IV lidocaine is the only thing that can break a bad cycle.

Which means...I will be writing a blog post about what a stay in Methodist is like!  Keep your fingers crossed that there's a cancellation and I get in earlier.  In the mean time, I will continue posting because I find it relaxing (and isn't that incredibly strange?) and it distracts me temporarily from the pain. Unfortunately, I can not write long posts and I must take breaks, because my eyes are not cooperating and my ability to focus on something for an extended length of time is nonexistent. 

On the plus side, I have several posts lined up to be written and since I'm currently hiding indoors away from the heat and the sun/rain/thunderstorms in my area, I'll have plenty of time to write. And sleep. To be honest, it'll mostly be sleep.

Meanwhile, I leave you with a quote that helps me through rough times like this:

June is Headache Disorder Awareness Month

In honor of Headache Disorder Awareness Month, I thought I'd share some information about migraines. Because they are much more than "just a headache". 

*Update*

For those interested, I get all four stages when I have a migraine. During prodrome, I get excessive yawning, food cravings, and occasionally neck pain and mood changes. During the aura stage, I get allodynia and occasionally tinnitus and visual hallucinations. Unfortunately, I cannot use these as signs of a migraine and pretreat myself, because I get these symptoms very frequently and at least 50% of the time, I don't get a migraine.  I would be using up precious medications treating nothing half the time. 

I get a range of symptoms during the headache phase, including moderate to severe head pain, made worse by physical activity, nausea/vomiting, neck pain, photophobia, phonophobia, osmophobia, dizziness, confusion, and eye pain. My migraine symptoms during the headache phase can range from one or two of these things, to ALL of these things.

During postdrome, I have everything listed - fatigue, brain fog, and depressed mood.  These usually last a few days.

Sleep

Sleep is a precious commodity when I have a headache or migraine, especially when I'm stuck in a cycle like I am right now. It is currently 3:37 am, and here I am, writing a blog post instead of getting the sleep I know my body needs.  Why am I awake, then?

1. Medication side effects - currently I am suffering from heart burn, a side effect of Naproxen.

2. Insomnia - I've been sleeping so much during the day, that I can't always sleep through the night properly.

3. Head pain - sometimes my head hurts so much that it wakes me from sleep and keeps me awake.

The unfortunate thing is, there isn't much I can do about it. Sure, I could take medicine for the heart burn. It might not work though. And sure, I could try not sleeping during the day. But when you're taking multiple medicines that all cause drowsiness, staying awake isn't always an option, no matter how hard you try. And as for the head pain, if anyone has an idea how to fix that so I can sleep, I would love you forever.

I did, in fact, take medicine for the heart burn and I'm waiting for it to kick in. But there's nothing I can do about the insomnia and head pain. So instead, I do my best to distract myself, hoping that, with time, I will fall asleep again. 

I sincerely hope that everyone else stuck with a headache or migraine or any kind of pain is getting a good nights sleep tonight. They say misery loves company, but, in this case, that's definitely not true. I wouldn't wish my problems on anyone, and I think most people with any type of chronic pain would agree. Not to say there aren't times when I think, "If only they knew what it was like" about someone. Who doesn't? But I truly wouldn't wish this on my worst enemy. Because even though I can find humor in my life, it also takes a great deal of strength to persevere, strength that I'm not even sure I have sometimes. But I always manage to find it somewhere, whether by myself, or from the support of my family and friends. And I will continue to do so.

It is now 3:56 am, and I'm still awake. 

I think my heartburn is gone, though!  Here's to small victories!

Infusion Day 3

Yesterday was my third day of infusion. Unfortunately, I started the day with my head pain at a 7 on the pain scale. To make things easier on myself, I took notes through the day and since my head still hurts, I'm going to copy those notes here, rather than writing something new.

5:30 to 6:10 am - wake up, get dressed, eat breakfast, take morning medications

6:15 to 7 am - travel to Jefferson

7 am - check in at the Headache Center. Waiting room is empty because, once again, I'm super early!

7:15 am - waiting room still empty

7:18 am - other patients being to arrive. One woman walks around the waiting room checking every chair before choosing one to sit in.

7:40 am - get called back to meet with nurse practitioner (Jen). Some of my meds for the day are changed (switch Zofran to Compazine, remove magnesium because it burned badly the day before, remove Benadryl due to possible adverse reaction causing me to be agitated). Also, since I've not been responding well to the infusion, Jen perscribed me a "bridge", which means I will take certain medications for several days to try and break the cycle. For this bridge I will be taking Naproxen and Compazine twice a day for five days.  In addition, I've been put on the waiting list for inpatient hospitalization at Methodist. The first opening is June 30th. If I feel better before then, I can call and cancel.

8 am - taken to private room (the same one I've had the past two days). Vitals taken.

8:10 am - IV placed

8:15 am - Ativan given

8:40 am - Compazine given

9:20 am - D.H.E. given

9:30 am - Toradol given, blood pressure taken 

??? am - fall asleep, remember nothing for rest of infusion

2:15 pm - leave infusion, head pain at 4 on pain scale

This morning when I woke, my head pain was back up to a 6 on the pain scale. I started my bridge, but so far it hasn't made a difference.  Here's hoping tomorrow will be a better day!

Infusion Day 2

I dragged my self out of bed this morning and prepared for my second day of infusion. We (my mom and I), left early, because I always fear we'll get stuck in traffic. We didn't, of course, and I arrived at the completely empty office at 7am (I was supposed to be there between 7:30 and 7:45am). Eventually,  the waiting room began to fill and I was called back by the nurse practitioner (Jen).

Since I wasn't feeling nauseous this morning, and I managed to not throw up during the exam, Jen decided to increase my D.H.E.  She also increased my Benadryl when I mentioned that I had slept very little during yesterday's infusion.

Shortly after that, I made my way over to the infusion unit.  Within seconds of entering, I was called back by a nurse. She offered me the same room I had yesterday, or I could chose a bigger room. Since I am a creature of habit, I chose the same room. Perhaps tomorrow, I'll chose a different room so I can compare them.

Since I still had bruises from the IVs from yesterday, the nurse studied my right arm and hand for a good place for the next IV. I mentioned that I generally get IVs in my hand and she replied that she could feel the scars from all those IVs. Despite this, my hand was the best option, so that's where my IV went.

Things went fairly well at first.  The first dose of D.H.E. made me nauseous, but that went away after half an hour.  About half way through the magnesium running, I told my nurse that it was burning my hand, so she stopped it there and moved on to the next med.  By the time it came for my second round of D.H.E., I was quite woozy from all the Benadryl, so the nurse talked to Jen and they decided to skip the rest of the Benadryl.  The nurse then gave me the D.H.E.  I was fine - at first.  After about five minutes, I became extremely nauseous and a minute after that, I was throwing up my lunch.

My nurse quickly set up a bag of zofran to take care of my nausea, and as soon as the bag was finished, she set up a second one.  By the time I was done, I was an hour later than they had predicted I'd be (luckily, my mom didn't mind waiting), and I was no longer nauseous, although I was still quite woozy.

The only other things of note that happened were that I discovered a small lump in my left arm and was told to keep a watch on it, in case it was a blood clot (it is now 8:33pm and the lump is barely there anymore.  I think I can safely predict that it is not a blood clot).  Also, my right hand is still swollen and cold from the IV,  which made typing this a joy.

That's it for day 2.  I'm hoping day 3 really kicks butt, because when I left this afternoon I was at a 4 pain wise, and now I'm back up to a 6.

Fingers crossed people!

Infusion Day 1

It is time to take another little break from my origins story to update you guys on what's been going on in my life.  I am currently on a new combo of meds and procedures (info on them will be in upcoming posts).  Unfortunately, while I think my doctors and I are on the right track, I've hit a stumbling block. That stumbling block is also known as this ridiculous weather.  Over the past two weeks, I gave myself two shots of Toradol IM (which helped temporarily but did not end the headache cycle I'm stuck in). So next, I tried D.H.E. IM, which I haven't taken in years, because it tends to make me extremely nauseous.  I took a zofran first, to try and prevent the nausea, then an hour later took the first D.H.E. shot. An hour after that, I didn't feel any better, so I took another shot (as permitted by my doctor).  Another hour passed, and not only did my head feel worse, but I was hot and cold at the same time, I was sweating like crazy, and my legs felt like they were being stabbed by knives.

Needless to say, I have no intention of taking D.H.E. at home in the near future (oddly, when it is administered to me via IV, I just get nauseous and nothing else). 

At this point, I called my doctor's office and left a voice mail for the nurse. I got a call back only a few hours later and was told to try a haldol bridge.

Haldol is a pretty strong antipsychotic that was given to me for the off label use of calming head pain and migraines. I have to use it in conjunction with cogentin, or else I become extremely jittery.  The dose I usually take is 2 mg, 1-2 times a day as needed. Occasionally I will use it as a bridge, and I will take one tablet, twice a day, for three days. When I informed he nurse that I had tried haldol the week before and it hadn't worked, she told me to double the dose. So I would be taking 4mg, twice a day, for three days.

I spent those three days in a drugged up stupor, barely awake.  On the plus side, my head felt much better. So on the last day I took the haldol, I spent four hours helping my sister clean the house as a birthday present for my dad, then I went shopping with my sister, then I stayed the night at her house and woke up early to go with her and my brother-in-law to the Rittenhouse Square Art Festival in Philadelphia.  Doing all of that turned out to be a huge mistake. My exhaustion came back and punched me in the face, followed by my head cranking up the pain again.

Yesterday, I called the nurse again, and this time she suggested I come in for infusion. For those unfamiliar with infusion, it is where you come to the office early in the morning. You see a nurse practitioner, who discusses what cocktail of meds you'll be receiving. Then you go to the infusion room, get hooked up to an IV, and chill for the next 4 to 5 hours getting drugged up.  You then repeat the process for the next two days, making it three days of IV medication in total.

Luckily for me, the was an opening in the infusion unit for the next three days (today, tomorrow, and Thursday). When I arrived this morning, I felt odd. Slightly nauseous and my head hurt, of course.  I was also very jittery. I paid it no mind and waited for the nurse practitioner to see me.  When she called me back, we went through the routine questions, took my weight and blood pressure, and then she started doing some basic neurological tests. At this point I had become very hot and began to sweat heavily.  I asked her to stop for a minute and she suggested I head to the bathroom. I sped over to the bathrooms, which were thankfully open.

I made it to the bathroom just in time to vomit up my breakfast.  After a few minutes in the bathroom, I felt much better, and headed back to the exam room.

Once I returned to the room, the nurse practitioner quickly went over what medications I would be receiving: Toradol, D.H.E. (only a small dose, to prevent nausea), Zofran, Benadryl, Magnesium, Ativan, and Keppra (because they were out of Depacon, which is what I usually get).

Then it was time for me to go to the infusion unit.  Until recently, the infusion unit at Jefferson was in a different building than the headache center. After receiving your paperwork, you had to travel three blocks to register and then be shown into a tiny room that held four chairs for you and your fellow headache/migraine sufferers.  Now, however, the infusion unit is in the same building, on the same floor, in the same office as the headache center!  After receiving your orders, you check out of the headache center, go down to the first floor to register (which you only have to do the first day), then head back to the second floor and walk right in to the infusion center.

Since it is brand new, it is much nicer than the old one was. In fact, I was immediately shown to a private room where I would get my infusion. 

Then I was hooked up to my IV. 

The rest of the day was relatively uneventful. At one point, the IV kinked and had to be taken out and switched to the other arm. I didn't get nauseous again and I even managed to sleep, if only a little bit. And my head, while not pain free, has definitely improved since this morning.

Now to wait and see what day 2 brings me!

Origins - Part Four (Or "What Caused Me To Want To Strangle An Old Lady")

So it's been...over a year since I've least written.  And I have no excuse other than - life happens.  Moving on.

After my surgery, I saw a great improvement in my symptoms for about 3 months.  Naturally, I was thrilled.  Unfortunately, it didn't last.  Slowly but surely, my symptoms started coming back, and by my one year post-surgery check up, I was back to feeling the way I did pre-surgery.  So, I decided to check out a place in Long Island that was known for treating people with Chiari Malformation, to see if they had any ideas (this is the Chiari Institute, where I saw Dr. B).  It was while I was there that the possibility of my having Ehlers-Danlos Syndrome (or EDS) was first mentioned (EDS is a connective tissue disorder that, in my case, causes the joints to be unstable; for more information, please visit the Ehlers-Danlos National Foundation).  And while I opted not to stay with the doctors in Long Island, I did follow their recommendation to find out if I had EDS.  I ended up visiting a geneticist (Dr. F) located in Maryland who specializes in EDS and after some testing, she confirmed Dr. B's suspicions.  Which meant I had another chronic disorder to add to my list.

I decided to stay with my doctors at Johns Hopkins and we settled into a routine of looking for a combination of medications that would work for me, with medications being rejected continuously either because they didn't work, or the side effects were terrible.  And I continued to have terrible migraines and on-and-off joint pain (thanks EDS!) for about 2 years.

Then, in December of 2011, I found myself suffering from one of the most intense migraines of my life.  I was completely miserable.  I couldn't eat, I couldn't sleep, I could barely function.  I ended up staying in the local hospital for a few days on heavy duty painkillers before I was transferred to the Jefferson Neurosurgery Unit, where they did numerous blood tests, a spinal tap, and had a neuro ophthalmologist come in to test my eyes.  In the end, they concluded that I had viral meningitis.  I was transferred to the neurology section were I spent a delightful few days getting to know my roommate (a heavily medicated old woman who kept turning on her light and screaming for her husband, which did not help my migraine at all - even just thinking about her now pisses me off, though I know it wasn't her fault) before I was sent home with a bunch of painkillers and a referral to the Jefferson Headache Center.

If you recall, I had been to the Jefferson Headache Center before and had left because I had issues with the doctor.  However, the doctor in the neurology unit at the hospital assured me that Dr. A, who I had previously seen there, was no longer with the Headache Center (in fact, he was no longer in the country!) and he strongly believed they could help me.  Since Johns Hopkins wasn't helping me much anymore, I decided to give it a try.

Coming Soon - Part Five