This post is personal. No links to studies to back up what I’m saying. Nothing more than what is happening to me.
On March 22nd I had a migraine. Every day since March 27th, except 1, I’ve had a migraine. Yes, I’ve had a migraine for 43 days out of 44.
This is not a medication rebound headache. I have not taken medication for more than 15 days in a given month.
Can you imagine the days I haven’t used medication?
When I use medication I have Maxalt, Toradol, Toradol injections, …and well that’s about it for my rescue meds. I am on others that are supposed to help keep these buggers away, but as you can tell, it isn’t working.
I’ve gone through a DHE protocol of 3 shots for 3 days. During this time was the day I didn’t have a migraine. I still had a headache, but it wasn’t a migraine.
Why is this happening to me. Well I have a guess, but I don’t really know.
After I had my seizures my Neurologist told me that Topamax can cause seizures in some people. This medication is used to prevent migraines, but it is also used for seizures. So the thought is that the seizure drug I was on actually caused my seizures. I was on it for a long time before I got seizures, but there was this little hiccup problem with that medication right before I started having seizures that probably caused it to go crazy. Our mail order pharmacy didn’t fill my prescription on time. They had a problem with the prescription and didn’t tell anyone. Things got so crazy I was off of my med for over a week, it may have been close to 2, when I finally got my prescription I just started taking the full dose, I didn’t think about ramping up.
So I ramped down and got off the Topamax and the seizures stopped. I was off of the Topamax for less than a month when these migraines started. I normally have about 15 migraines a month, some months a little more. Very few months have I had less than 15. I used to think the Topamax didn’t do a lot to prevent my migraines, now I am pretty sure it did. Right now I’m so ready to go back on this drug. If I have a seizure I’ll stop it. (I wouldn’t say this if the seizures had been hurting me, but from all the tests, the only harm they cause if the twisting of my body.) Unfortunately, I kinda doubt my doctor will be willing to take this risk. Maybe there will be something better.
Today my neurologist called in another medication for me. I’m to have 2 more DHE shots and take this new medication right before I go to bed for 3 days. (I’m sorry I don’t remember what the medication is, I’ll find out when Stuart gets home with it.)
If this new medicine regimen doesn’t work I don’t know what the doctor will do. I’m lucky that my neurologist specializes in headaches. She actually runs a Headache Clinic. I’m confident we will be able to get these migraines under control. She won’t give up.
During this past month the vertigo has showed it’s ugly head again, but not as often as I would have thought. I do question if this vertigo was Migraine Associated Vertigo (MAV) . I’ve had a couple of attacks of rotational vertigo (where I see the world spinning around), most has been motion vertigo (where I feel as if I’m moving but I’m not). Rotational vertigo is by far the worse. I had a bought of that yesterday, but it wasn’t too bad. The world would spin for a few seconds then for hours I’d feel like I was moving or that when I moved I had absolutely no balance what so ever. Yesterday could have been MAV, I just don’t know. It was a very bad day. I woke with a Migraine at 9.5 on a 0-10 scale. This causes me a lot of stress, stress causes a Meniere’s attack, of course that causes vertigo. I’m leaning toward Meniere’s because my hearing was way off all day.
Most of the month I’ve been having motion vertigo, this was only the 3rd time I’ve had rotational vertigo. I’m not sure why the rotational vertigo has calmed down, but I’ll take it.
I haven’t been around so much this past week, because the pain is getting to me. I’m falling into Migraine Madness.
So, all my ramblings lead to one thing. My head HURTS.
As I’ve written about before, I have vestibular migraines, with Migraine Associated Vertigo (MAV). It is hard to diagnose this type of migraine,it’s also very difficult to figure out if your vertigo is coming from MAV. I came across this article the other day and thought it was worthy of sharing.
Following are the Symptoms they talk about, please go to the actual article to read about each of these in detail.
1. You have a personal or family history of migraine.
2. You experience vestibular symptoms in the presence or absence of a migraine headache.
3. Your vestibular symptoms vary in their severity over time.
4. In an episode, you experience other classic migraine symptoms.
5. Your symptoms increase with exposure to known migraine triggers.
6. Your vestibular symptoms significantly reduce your quality of life.
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.
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.