It’s very hard for me to start writing again after I have been away for so long. Especially after I wrote 2 posts that I am very proud of right before I had to go away. Why did I go away? Because my symptoms have been worse than usual. Specifically my migraines.
I won’t go into a lot of detail about what happened to me specifically. Let’s just say, my migraines have been off the charts. Lights hurt, Sounds hurt, Smells hurt….yes – Smells Hurt! I’ve spent many days in the dark, without my cochlear implants on, filled with medication to make it so I wouldn’t throw up (it didn’t always work), and some days I had to wear a mask to help keep out any smells that were coming in (and we keep our house as scent free as possible). I’ve also had a lot of Migraine Associated Vertigo (MAV), or Vestibular Migraine, during this time. (you can read more about MAV on the Vestibular Disorders Association Site…just click here.) I have chronic migraines. Having chronic migraines means you have at least 15 migraines a month for at least 3 months a year. (normally, you have migraines more days than you don’t)
A lot of people think migraines are “just a headache”, they aren’t. So I’d like to take a little time to talk about migraines.
Headache migraines are moderate to severely painful, get worse with physical activity, are throbbing and often worse on one side, cause a sensitivity to light, sound, smell and last 4-48 hours (or more) without treatment. If you have any of these symptoms, please talk to your doctor. You do not have to have all of these symptoms to be classified with migraines, you can have a few. There are also different types of migraines. You might want to learn a bit about the different types of migraines…there is a list..here…with definitions and all that kind of stuff.
- Migraine is an inherited neurological disorder.
- One in 4 households has a member with a migraine disorder.
- Migraine is 3 times more common in women than men, and will affect 30% of women over a lifetime.
- The World Health Organization places migraine as one of the 20 most disabling medical illnesses on the planet. Chronic migraines are even more disabling. Yet it is almost impossible to get disability due to migraines. If you have another condition and you can add migraines to it, they might listen to you, but when I filed, they were hesitant to even mention my migraines, even though they are extremely disabling.
- Those with migraine are more likely to have depression, anxiety, sleep disorders, other pain conditions, and fatigue.
- There is no cure for migraine. Treatments are aimed at reducing headache frequency and stopping individual headaches when they occur. And constantly trying to find the right medications with the fewest side effects to help with this goal.
- Prophylactic treatments (to reduce headache frequency) may include avoidance of migraine triggers, medications, physical therapies and behavioral therapies. This is great if you can figure out your triggers. Also, if your trigger is weather related, how are you going to avoid that? I can’t stop the weather from changing.
- Abortive treatments (taken when a patient has a headache) include over-the-counter pain relievers and prescription medications. This is great, but you can’t take too many of these because they will cause medication overuse headaches (rebound headaches). See more information below. I am constantly aware of this and often afraid to take medication even though I’m in severe pain because I don’t want to go through withdrawal symptoms.
- Prophylactic medications reduce headache frequency by 1/2 in only about 40% of patients who take these medications. And the 60% just suffer??
- Medication side effects often limit the use of migraine medications. Oh yes. I know this very well. Severe itching, causing severe stomach pain, heart palpitations, constipation, diarrhea, tingling in my extremities, a change in what things taste like (the last two I put up with until the medication stopped working), Rocesea, low blood pressure…..It’s kind of scary sometimes isn’t it?
I only just touched on the surface of migraines. There are many different types of migraines. I haven’t even talked about all the symptoms I have.
I would like to talk a little bit more about the treatments.
Many of us cannot get the amount of medication we need each month because our insurance will only cover a certain amount. Insurance companies will often only allow only 9 pills of triptans per month, this is an abortive medication. Sometimes I have to take 2 when I have a migraine. That would only cover 4.5 migraines. If it covered 9 migraines that wouldn’t be as bad, but if you need to take 2 for a migraine, you are in big trouble. This medication works best if you take it as soon as you feel a migraine coming on. Everyone I know always waits until they absolutely have to take it because they don’t want to waste those pills. This is so sad. Ideally we don’t have to take more than 9 abortive medications in a month, but that is in an ideal world. Of course, taking to many will cause medication overuse headaches….discussed below.
It’s best if you have a preventative medication, this will reduce or eliminate most of your migraines, if it works. Unfortunately, we haven’t found a preventative medication that works for me. I have had some work for a while, then they stop. We are constantly trying new things. Until then, I’m afraid to take my medication, until I know my migraine is to the point I can’t deal with it on my own. And that is often too late for the drug to work properly. It’s a Catch 22.
We also have to worry about Medication Overuse Headaches, formerly known as Rebound headaches. Defined by the Mayo Clinic “Rebound headaches (medication-overuse headaches) are caused by regular, long-term use of medication to treat headaches, such as migraine. Pain relievers offer relief for occasional headaches. But if you take them more than a couple of days a week, they may trigger rebound headaches.
It appears that any medication taken for pain relief can cause rebound headaches, but only if you already have a headache disorder. Pain relievers taken regularly for another condition, such as arthritis, have not been shown to cause rebound headaches in people who never had a headache disorder.”
For extensive information on Rebound Headaches, The Migraine Trust has a great article titled Medication Overuse, it if very informative. If you have headaches of any kind, and find yourself reaching for medication more than 10 days a month, I encourage you to read this article. This can also include the use of caffeine.
Another issues migrainers face is that we are often labeled drug seekers. I can’t even take narcotics. I have had a migraine that has been so bad I couldn’t see and was throwing up, but would not go to the ER, because I know how so many friends have been treated so poorly there. They have put them aside and just tell them they aren’t going to give them any drugs. I don’t want narcotics. There are specific migraine medications that I want. Luckily, my doctor has taught my husband how to give me those shots so I have them at home. I’m in the minority, I’m a very lucky patient. I am able to see a neurologist who specializes in headaches. There are very few of these doctors. Most people with migraines have to go to a neurologist who see people with many types of neurological conditions, my doctor is very specialized. All she does is headaches. It’s great. She is working very hard to get my headaches under control.
That’s all I have to tell this time around. I have a lot more I’d like to share….not about migraines, at least not right away *smiles*, I hope I can come back very soon.
If I don’t get back before tomorrow…oh who am I kidding, I’m not going to get back before tomorrow….
I wish you all a Happy Thanksgiving! And I want you all to know how very Thankful I am for you. You are pretty darn special to me.