Hemicrania Continua

I found this article and it made me laugh. Humor is a great tool when trying to deal with any chronic illness, but at the heart of what James is saying is good information. If you are having chronic, unrelenting headaches and your doctors have not considered Hemicrania Continua I recommend you check this out. I do not suggest being on Indomethican for longer than a month though, but it's a great tool for diagnosing this condition. 

From http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/
You’ve always wanted to misdiagnose hemicrania continua, but you haven’t been sure how to do it?  You’re in luck!  A recent study is bringing to our attention some of the most popular ways to mistreat and misdiagnose this disease, so you can choose your favourite next time a patient comes into your waiting room.
All right – joking aside.  I know that doctors do not want to misdiagnose, but for some reason with this one it’s happening.  And there’s good reason.  When a patient comes into a doctor’s office with a one-sided headache, it’s natural to think it’s migraine.

So what is it?

But hemicrania (one-sided) continua (you know – doesn’t stop) is different.  You’ve guessed one reason – it tends to be more steady than migraine.  It doesn’t change sides, as migraine pain often does.  Also, it doesn’t come and go like a headache from migraine usually would.  It stays and doesn’t go away, though it can go from moderate to severe.
Like cluster or migraine, it can be accompanied by congestion, and watery eyes.  A shrinking pupil or drooping eyelid is also a common symptom when the pain increases, making it look like cluster.
But, once again, unlike cluster or migraine (usually) the pain is continuous.
And with hemicrania continua, there’s a silver bullet that almost always works:  indomethacin (indometacin).  Indomethacin is a non-steroidal anti-inflammatory drug (NSAID), sold under brand names such as Indocin, Indorchron E-R, and Indocin S-R.
So with such a good treatment readily available, you may imagine it’s important to get the diagnosis right.

Popular Misdiagnosis

The study in Italy on hemicrania continua, published in February, found that all the patients with hemicrania continua had been given an incorrect diagnosis.  Here were the most popular ones:

The reality sets in when we find out what kinds of treatment these patients received.  Remember, treatment with indomethacin would have almost certainly been effective. On average, the patients had tried 3-4 different classes of drugs, most of which were, of course, ineffective.  36% had undergone ineffective invasive treatments as well!
Hemicrania continua is usually listed as a rare condition.  But looking at studies like this, it makes you wonder if more people should be trying indomethacin early on in their treatment.  It has been argued before that, though not always obvious, hemicrania continua isn’t that rare after all.
If you have a headache that tends to be on one side, this is something you should be talking to your doctor about.  An indomethacin trial will rule out the possibility of hemicrania continua, or it might just be the answer.

Vacation and Holidays

So my Disney World trip went pretty well. We were there for 8 days and 7 nights. I did need numerous breaks and couldn't do a full 12+ hour day. It was difficult because I could remember how much easier it was for me 5 years ago before this illness came on, but trying to compare myself to that person is useless. I was very lucky and got a disabled person's pass that basically allowed me to skip the lines and also sit close to the stage for shows (I have some vision loss from Intercranial Hypertension years ago). Technically the pass (called the guest assistant card) is just supposed to give the holder a place to sit while they wait, but it ends up just being a permanent fastpass. Now I say this not because I want people to take advantage of the system (I beg that you do not), however not many people know about this tool and it is extremely helpful to those who need it. It literally allows me to enjoy Disney. My stamina is still not what it used to be and standing for hours is rough. I did notice that my headaches were pretty bad, but I didn't notice them until the end of the day. My stimulator allowed me to take this trip and I am truly thankful.

If you are planning a trip to Disney (land or world) I recommend checking out this website (http://www.diz-abled.com/Disney-Resources/Articles/Disney-Guest-Assistance-Cards.htm). My mom even bought me a book about visiting Disney World with a disability. It helped me plan breaks and showed me good places to rest. Our hotel was 30-60 minutes away from the parks, and I get motion sick on buses, so I had to find alternative places to relax.
Since getting back I have found a pain management counselor. It was something I've been meaning to do for months, but I continually put it off. I knew I needed help dealing with the pain I still have, but I honestly didn't know where to go. I got a referral from my primary care physician and after one visit I'm pretty happy with this therapist. He seems to understand pain. I guess I am resistant to this process because it's not easy. Confronting fears and dealing with the idea that I may never actually be 100% pain free is scary. Don't get me wrong, I am doing so much better than before the surgery, but it's not perfect. I think that before the stimulator I couldn't have even gone to therapy because it was too hard. Now that I am in considerably less pain things are easier to deal with.
I no longer use my stimulator every day. I would say probably every other day or so. I have it on for 12 hours and turn it off at night. When I had the trial stimulator the feeling was soothing and helped me sleep, but more recently it annoys me when I try to doze off. I think this is because I now go to sleep on my stomach and the stimulation is more intense when my forehead is pressed into the pillow. My pain relief is still amazing. I feel like I finally get the hang of how to use the stimulator effectively. I pretty much only use one of the four programs. The others don't offer as much relief. And since I don't have the stimulator on constantly, I don't get headaches from over stimulation (which does happen).
I would like to wish everyone Happy Holidays! If you have to travel be safe!

Disney World

I will be leaving for Disney World this Saturday. It's a trip that my brother and I have been planning for years, but my headaches always got in the way. The fact that I am now able to go is all due to the stimulator (and a very generous sibling). I will write when I get back and share how I was able to control the headaches.

Falling and Fears That Follow

My mom came out to visit me this weekend because I have been feeling so much better and it's been years since she's seen that. We spent hours shopping and having a good time. Our last stop for the weekend was Costco to pick up odds and ends. Wouldn't you know it? I slipped on a liquid substance (maybe jam?) and fell. Hard. At first I didn't know what happened. Then I wanted to get up and leave quickly because I was so embarrassed but luckily my mom had me stay down until we could make sure everything was fine. I was sore but that didn't matter; I was concerned about my stimulator. I know that the wires can dislodge after a jolt (usually a car accident or a big fall) and I wanted to make sure everything was in place. I'm sure the poor Costco manager was wishing it had happened to someone who didn't recently have brain surgery, but that's the way it goes. 

I went to the ER and got X-Rays as well as a CT Scan. Luckily everything was in place and I was discharged after a few hours. My hospital experience made me wish I was back in Sacramento with knowledgeable doctors because everyone at Renown looked at me like I had a second head when I told them about my stimulator. I have been considering finding a neurologist and neurosurgeon here in case I need anything, but so far I do not have much confidence in the doctors in Reno. Perhaps it's worth the two hour drive to visit UC Davis. 

I will need physical therapy because I pulled my back out. I hate physical therapy. I have had many experiences with it in the past and while it does help, I don't enjoy going (especially at this age, I'm too young!). This fall made me even more thankful that I do not have the stimulator battery pack in my back because there is no doubt I would have caused some damage. As anyone who has had this surgery knows, the fear of a revision surgery is real and always looming. Hopefully as time goes on I will think of it less and less. But for now, I am still treating my body with kid gloves. 

I have been trying to taper off the pain killers, but every time I try I seem to hurt myself. I am truly struggling with this and it brings me a lot of shame. I thought it would be easier than it has become. I'm really not on a high dose, and I don't believe I'm addicted because I'm taking less than prescribed. Yet I know that my body is dependent. What it really boils down it is I'm afraid of going off of them because I am petrified of being in pain. The funny thing is I also know that I'm in more pain because I'm on opiates and once I get off I'll be amazed at how good I feel. I'm just scared. I don't want to go off of them and have to go back on. I'm seriously looking into doing a detox program through a local rehab center. I know my insurance will cover it, I just want to make sure I'm not branded an "addict." 

I so wish there were more doctors out there that understood chronic pain and opiate use. Before I came across my correct headache diagnosis (hemicrania continua) and the ONS surgery I applied to go to a pain rehab clinic. It looked amazing: mornings were spent with a counselor that understood pain, afternoons were spent doing exercises and learning meditation. Basically, they taught you have to live a modified, but normal, life without medication. I soon found out they did not take headache patients. I was devastated, which sent me on a search for somewhere that did. To my dismay I could not find any. There were several headache specialty clinics, but nothing to help cope with chronic pain. I suppose that is part of the reason I was so gung-ho about the surgery. I knew that I didn't have many other options and I certainly didn't want to be on opiates the rest of my life. Perhaps one day doctors will stop throwing pills at people and teach them how to deal with pain, but maybe that's just wishful thinking.

I found this website very helpful when trying to deal with chronic pain. The books that they sell are amazing and I highly recommend them. 

http://www.theacpa.org/

And their store:

http://acpa.stores.yahoo.net/

A Month Already?

I can't believe how long it's been since I last blogged. I have done so much! Spent a week at the beach with my amazing boyfriend, a week back at my mom's house in Sacramento, completely redoing my front porch (oh the joys of buying a foreclosed home!), daily walks with my dog and getting ready for school. All of those little things are so much easier to handle now that I don't have horrible headaches.

I use my stimulator sporadically. I will turn it on when my pain reaches a 2 or 3 and generally leave it on for a full day. I notice the stimulation is stronger when I press on my forehead, so sleeping on my stomach can be a little uncomfortable. Usually around hour 25 it really starts to annoy me, so I'll switch it off for a day or two. Then the cycle starts again.

Something I have really been struggling with is getting off of pain killers. I wasn't sure if I should broach this subject, but I think it's important. My use of opiates has been fairly consistent over the past few years. I have never had an addiction problem, yet I often do not discuss my usage because many people do not understand taking them responsibly. I always hear a story about how it's only a matter of time before I become an addict.

I strongly believe that to become addicted to opiates you can't be in pain. At least not chronic, overwhelming pain like many of us are. There are some doctors who do not believe in prescribing pain killers unless a person is terminally ill. This is beyond frustrating to those suffering with chronic pain. To be honest, those pills saved my life. There were days when I was so hopeless and in such dire pain that I was suicidal. However, there are also doctors that will hand out prescriptions like candy, and these doctors cheapen the real pain that some people are in.

What I am having issues with is physical dependence. Much different from mental addiction. I don't think I realized how much my body needs this medication. I've been trying to wean off slowly, but it's easier said than done. I just can't wait to be done with them!

Home at Last

I drove the few hours back home a little over a week ago. To say I was nervous would be an understatement. I hadn't driven in probably two months and I wasn't ready to leave the comfort of my mom's house. I think I was overwhelmed. It feels like I'm mostly out of pain and now I should get right back to my old life- working at least 25 hours a week and going to school full time. I mean, why wouldn't I? I feel overwhelmed. So I'm trying to take things one step at a time and give myself a break.

I am enjoying being out of pain. It's been 4 years, which, at 25, might as well be a lifetime. To say that I'm completely pain free would be a lie, yet it's minimal and I can handle it. Sometimes the stimulator bugs me. I can't exactly explain why, but I just turn it off to give myself a break. I have it on for the majority of my day and I usually sleep with it on. I keep it very low, around 1-1.5. The power goes up to 10 (or so I'm told, I turned it up to 3 and it really started to hurt). I also found that keeping the pulse width low (25-40) gives me more relief than turning it higher. I have 4 different programs I can choose from (A1, A2, B1 and B2). They are all a bit different and I usually stick with the A's. The B's seem to irritate my scalp which makes it itch.

I'm trying a new scar removal patch. I bought Bio Oil and despite the label that told me it was not oily, it really was. I let it dry for an hour then put on a shirt and stained it. So I bought ScarAway silicone patches since they are supposed to work well and they were affordable ($20 for 8 weeks). I know they are not the highest rated on the market, but I couldn't afford the $50+ for the Cica Care which are supposed to be the best. I enjoy the patches since they do not get in my way at all. I put them on at night, leave it on for 12 hours and take it off. Each patch is good for one week and you get eight in a box.

I have been trying to push myself to get out of bed and do something every day. My stamina is totally shot and I get exhausted easily. I know that it's going to take a while until I'm "normal" but it's almost fun working up to that goal. Next week my boyfriend and I are taking a vacation. We'll be going to the California coast and camping. But not real camping, KOA camping with cabins and all since I'm not quite up to sleeping on the ground.

Heading Home

I'm going to be going back to Nevada in a few days. This means I'll have to return to a normal life where I won't have most of my meals cooked for me, I'll have to do the dishes, my dog will have to be walked (I will miss just letting her out to romp on my mother's five acres), and of course, school next month. I have been very lucky that my mom has been so supportive and such a big help during my recovery. Part of me doesn't want to leave, but I'm bored. I personally consider boredom to be a good sign since it means I'm feeling well enough to be somewhere other than in my bed watching tv. My stamina is ridiculously low and I figure it will take a long time to build it up. That task is daunting and I'm not sure what my future looks like. When I was sick I thought getting out of pain was my whole battle, but I was wrong. There are emotional/psychological issues that I need to deal with now that I can.

I finally got my stimulator programmed correctly. I told my rep that I was unhappy with Mike, the rep that was at my revision surgery so she met me at my general practitioner's office. Turns out Mike did not change the programming at all after my stimulator was repaired, despite the fact that I told him before and after the surgery that it needed to be fixed. It frustrates me I was in pain for a week and a half longer than I needed to be, yet there is nothing I can do about it now.

I went to my post-op on Thursday with my neurosurgeon. He took the time to answer every question I had which I really needed. I wanted to know if I am able to get pregnant and have a fairly normal pregnancy with the stimulator (though I absolutely am not planning on children for years) and he said I should be fine. I asked him if I'm going to run into an problems with the battery pack moving if I lose weight. He said it might shift depending on how much I lose and I may need a revision at that point. I've been having some shoulder pain caused by the tight wires in my neck and he suggested physical therapy before it heals. I feel more confident about it all now and I'm ready to be done with doctors for a while.

My stimulator is still giving me great pain relief. It seems I get some soreness if it's turned up too high just because the wires are in a very sensitive area. I get frustrated with it all sometimes though. It's not that the sensation is annoying, it just gets frustrating to need it so often. I am hoping with time I will be able to use it less and less.