Drugs, drugs and more drugs

Plavix is another blood thinning drug, often used in conjunction with aspirin. After being on Coumadin for two months, I was switched to Plavix and aspirin after having surgery. I stayed on that combination for three months (which is standard for people who have the surgery I had). A follow up MRI showed my dissection had healed and I was allowed to go off Plavix, but I must stay on baby aspirin for life.

Here's some info about Plavix:

http://www.drugs.com/cdi/plavix.html

Painkillers are another category of drugs that I became all too familiar with after my dissection. One of the odd things about carotid artery dissection is that it can cause tremendous pain — or no pain. There is a condition called Horner's Syndrome that is associated with carotid artery dissection. I had a classic case of Horner's Syndrome, which caused severe pain on the left side of my face and neck and — worst of all – behind my eye. The pain I experienced was as bad as labor contractions. One of the worst moments of this whole experience was when I had to convince a neurologist to give me something stronger than Tylenol for the pain. While he admitted there was "some pain" associated with Horner's Syndrome, he was skeptical that it warranted stronger drugs. Eventually I wrangled 20 Vicodin out of him. Then I got another, more sympathetic doctor, to give me other drugs (Percocet and Oxycontin) since the Vicodin made me sick. I hated being on the drugs but they gave me relief from that stabbing pain. Although it has addiction potential, I would recommend Oxycontin because, unlike Percocet, it took care of the pain without turning me into a drooling zombie.

To read more about Vicodin, Percocet and Oxycontin, look here:

http://www.drugs.com/cdi/vicodin.html

http://www.drugs.com/cdi/percocet.html

http://www.drugs.com/cdi/oxycontin-sustained-release-tablets.html

Xanax is an anti-anxiety drug which I had no experience with prior to having a stroke, but I am so glad my doctor prescribed it for me. It got me through the first few months of this ordeal. Like a lot of people who go through a traumatic health crisis, I got walloped with a major case of anxiety after I had the stroke and then again when I had surgery. The Xanax also helped me cope with another side effect of this experience: insomnia. Xanax is supposed to be highly addictive but I never took more than 2 a day and I did not have any problem going off it.

Here's more about Xanax:

http://www.drugs.com/cdi/xanax.html

The last thing I want to share about drugs is: be aware of drug interactions. If you are taking multiple drugs you need to check with a pharmacist to make sure there are no dangerous interactions. You should also find out about mild or annoying side effects of the drugs (such as constipation) so you know what to expect when they happen to you.  

Drugs

After I was diagnosed with carotid artery dissection, I was put on Coumadin (also known as warfarin) with a "Lovenox bridge". 

Lovenox is a drug you inject into your stomach twice a day that provides blood-thinning effects while the body adjusts to the Coumadin. I was terrified when I learned I would have to inject myself in the stomach, but was pleasantly surprised to learn it barely hurts at all. Here's some info about Lovenox:

http://www.drugs.com/lovenox.html

Coumadin (sometimes referred to as "rat poison") is a drug you take in pill form. When taking coumadin, you have to have your blood checked regularly to make sure you have the correct "INR" level regulating "thinness" or "thickness" of the blood. The foods you eat have a significant effect on how the body metabolizes Coumadin. It's easy and painless to get your blood checked, although slightly inconvenient since you have to go to a doctor's office or clinic to be tested. Learn more about Coumadin here:

http://www.drugs.com/mtm/coumadin.html

Future posts

I plan to post information and links about:

coumadin vs. plavix

Horner's Syndrome

conflicting advice from doctors about activity allowed during recovery

dealing with the psychological fallout 

CT scans, angiograms, and MRI/MRAs

pain management

Support groups on the Web

I found two support groups on the Web that have been really helpful. I learned a lot about my condition through the people in the groups, and the psychological benefits have been wonderful too. It helps a lot to know other people who are going through exactly the same thing as you, especially something as rare as carotid artery dissection. Also,  I believe that what I learned from people in the support groups actually saved my life because I was able to identify a new symptom (pulsatile tinnitus) as a red flag. So if you have carotid artery dissection, check out these groups:

http://health.groups.yahoo.com/group/carotiddissection/

http://www.facebook.com/group.php?gid=47265659349&ref=ts

Stroke and carotid artery dissection

At the hospital after my stroke, I was questioned repeatedly by various doctors, residents, medical students. Their goal was to figure out why I had a stroke. An MRI showed I had experienced acute ischemic stroke on the left side of my brain, though luckily I had no visible lasting effects from it. I had just turned 40, was very fit (I had gone for a long run right before I had the stroke), and had no health issues. Despite all this questioning — even by a neurologist — no one figured out what was actually wrong with me and I went home from the hospital with a diagnosis of "migraine brain." This same scenario has happened to many people with carotid artery dissections. It is a difficult diagnosis to make.

In the hospital, I noticed that on every wall in every room I was wheeled into, a bright neon "stroke protocol" sheet advised medical personnel to check for various symptoms of stroke and take appropriate action. Yet carotid artery dissection is a common cause of ischemic stroke in people under 50 years old; in fact it causes up to 25% of ischemic stroke in that age group. And the condition most often strikes people in their 30s and 40s. For more about the condition, see:http://emedicine.medscape.com/article/757906-overview

About a month after my diagnosis, I went to see a lecture by a leading stroke doctor. I asked her after the lecture why the "stroke protocol" sheet doesn't include a simple tip such as "check for carotid artery dissection in stroke patients under 50". She said her colleagues are working on building visibility for the condition within the medical community. 

Pressure from people like me can help make this happen, so I will be doing some lobbying around this issue. 

My story

In October 2008, six weeks after completing my first triathlon, I had a minor stroke caused by a tear in my left internal carotid artery. This condition, called carotid artery dissection, is a common cause of stroke in otherwise healthy adults under age 50.  Like many others who have a stroke caused by this relatively rare condition, I was initially misdiagnosed at the hospital. Once I was correctly diagnosed, I was put on blood thinners (Coumadin) and was told the dissection would heal on its own over the next six months. 

Thanks to the research I did on the Internet, I found a community of people with the same condition. Their stories gave me valuable information about what kinds of symptoms were red flags. I developed one of those symptoms (pulsatile tinnitus) about two months after the dissection occurred, and called my doctor to ask about it. A CT scan showed I had developed a rapidly growing "pseudoaneurysm" that was blocking 90% of the blood in that artery. To fix that, I had a metal stent and coils inserted in my carotid artery through the femoral artery in my groin. 

My research and the connections I've made with others who have this condition showed me that there are few resources available to people who want to learn more about carotid artery dissection. I also learned that very few of us get the same advice from our doctors and there is no one method doctors use to treat this condition. That's why I've decided to post all the research I've done on this blog, so that others may benefit from what I learned.