What type of migraine do I have?
I've had migraines for 35 years, but they've changed over the years. At first I had pure migraines and when imitrex came on the market, it worked for my migraines. But imitrex and maxalt and relpax quit working. So then I started on fioricet. This was around the same time I started at least monthly visits to urgent care (cheaper and faster but they give me a bad migraine the next day and makes me throw up a lot) or the ER (better meds, but the old cold Drs and long lines. Last time I went my whole care was done in the waiting room until four hours later when they decided to admit me).
Two years ago my headaches turned chronic. My neurologist at the time had tried everything and gave me stadol. It made my life come back again. I could go from dying on the couch to eating with my family in 15 minutes.
But now I see a headache neurologist and he keeps asking me about my pain. In ways I've never been asked before. I thought I had headache pain of varying times per day cluster into groups of headache days consecutively with a day or two between. Sometimes as long as five days. But he didn't agree with this (told me I was wrong and lying, but I let it slide - this dr is very black and white, no grey. He said I either had to have some sort of headache pain, even mild, every day, or i had a standard flow of migraines where the migraine only lasts 1-3 days and then several days or even weeks between migraines. And I have to figure out which one it is because the treatments are different. So I said every day. I'll describe my pain and see what you think.
I will have days where I get stabbing shooting pain in my temples or a general pressure around my whole head. And when I can lay down on my special pillow, the pain slowly goes away. Also my scalp, especially the occipital area, is extremely sensitive. I Can actually start a headache by slightly looking down at my laptop or propped up on pillows to watch tv. And they are full fledged migraines.
My headache pain can be anything from feeling like my head is being stuck in a vice to pulsating throbbing pain on one or both sides of my temporal bones. When this happens, the eye on the side of the pain years and closes from the pain. Then i can have all over head hurting and slight pressure. In February I had a migraine that made my left arm almost completely paralyzed for quite awhile.
So what kind of headache do I have (besides chronic)? Is it in my neck? Is it traditional migraine? Is it tension type? Is it something else or a little of all of them? Right now I'm on depakote, lyrica, and verapamil. Yesterday I got occipital nerve injections, which hurt like hell because he actually did more of a TPI/NB. He injected the needle halfway between my shoulders and neck and moved the needle around in the muscle and nerve, injecting lidocaine and methelprednisolone.
I guess what I'm asking for is advice or stories of what could work based upon my symptoms and your experience.
Thanks,
Michelle
Hi Michelle,
I'm sorry you are having such a difficult time right now. Let me see what information I can give you that may help. How does that sound?
As much as I'd like to tell you want type of migraine you have, only a qualified doctor can do that. It sounds like the doctor is asking the right questions trying to narrow down what may be going on. Some of the symptoms you describe can be experienced during a migraine attack, but getting the correct diagnosis is important so we can get the proper treatment. It's unfortunate, but many of us have had to wait a number of year before being accurately diagnosed. Let me share with you our information on doctors and diagnosis; https://migraine.com/blog/migraine-management-essential-diagnosis-and-doctors/.
By any chance are you taking something on a daily or near daily basis to help relieve your pain? One problem we can unwittingly get ourselves into is called medication overuse headache, or moh. Moh was formerly called rebound and can occur if we take pain and/or migraine medications (Maxalt,Relpax, etc) whether they are over-the-counter or prescription, more than two to three days a week. If we are in an moh cycle our migraines will be more difficult to treat and we can end up in a daily cycle of pain that too is hard to treat. Take a look at this information when you get a chance; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.
Let me know if this helps,
Nancy
Michelle- you can also be experiencing more than one type of migraine. I think Nancy will agree with me that it is not uncommon for migraine sufferers-particularly women-to experience more than one kind of migraine and often not realize it. I had the unfortunate experience of dealing with a MOH cycle headache that lasted approximately 3 years. It was literal agony at the end and resulted in a 10 day hospitalization, so I do not recommend it!
The first year after my hospital stay was the most difficult because I pretty much had to give myself IM injections of Droperidol when I had a migraine which meant a 2 inch needle syringe in my thigh. I had to do it because my husband couldn't stick that long needle into my leg. It was kind of daunting! (Which was the point-no pun intended!) I also had to give myself shots of Benadryl at the same time using 1inch 22.5 gauge needles. They were monsters! I am not squeamish., fortunately. You really can't be and be one of us. Oh, and as luck would have it, I have rotten veins too, which makes my life even worse! My little MOH resulted in a 5 day DHE treatment to "break" the headache. Oh my word!! Next time I will just remove my head. After my veins tried to survive that.....well, let's just say we were not on speaking terms.
We are taught that if something is good, then more must be better, right? Well opiate based meds are not. They just push the pain down and then it comes back stronger. Many meds that they thought were so good for us are really bad about it. OTC meds can even be really really bad! Actually practically any medication taken daily can do this. Mine was Soma. It helped me sleep, but it made my head hurt too. So in the end, not worth it. Sleep has always been a double edged sword for me. I either get too much or not enough. Finding the right balance is a crap shoot. When I sleep, everything else works great. When I don't then my entire world starts to crumble. Sleep will stop a headache in its tracks usually, but getting me there, now that's the real trick! I have light auras. Unfortunately, I don't notice them until I walk into a darker room and by the time I have one it is usually too late.
My headaches feel like an ice pick through my eye. For the most part, They are on my right side. I get nauseous and have diarrhea. Sometimes I even lose my balance. I will have the distinct impression that there is a hand over my left eye when I am in the dark unless I look directly at something. My hair follicles on my scalp are extremely sensitive-I can not stand the slightest touch. Light is physically painful. Certain sounds are painful-(my husband has a deep bass voice and I can tolerate his voice if he speaks softly, but my sister who is a soprano I can't because her voice is too high. We have a clock that plays melodies every hour while it is light and it drives me nuts but our grandfather clock has a deep voice strike and it does not bother me. The temperature is very important-it can't be too hot or too cold. I can't tolerate motion. If someone else moves the bed when I am nauseous, well that is an act of treason. I can tolerate my dog cuddling with me, but not my husband or the cat (unless the cat is being sweet which for him does not happen often-he is more inclined to nip my toes.)
Do you keep a regular wake/sleep schedule? Have you kept a diary of all that you eat and drink and also when your headaches start, what they feel like, the pain level etc.? I had to do all of this to determine what was going on with me. I realized what my food triggers were this way and how much my coffee actually helped me. I also identified aged cheese as a trigger, MSG, anything with high levels of iodine, certain types of red onions, and most soy sauces. Even with my neurostimulator I don't eat most of this stuff. I have gotten by without it this long, no need to start having it now! I am not great at having a regular schedule unless it is staying up late and sleeping late. I am by nature a vampire.
So, I hope this is helpful. Keep advocating for yourself and asking questions. Your doctor is asking you the right questions! The more information you have, the better prepared you can be. Oh, and just remember, YOU are always going to be your best advocate! Migraines are NOT easy to deal with. If we all walked around with casts on our heads people would take us more seriously. So, hang in there!
Let me know if you need any more information,
LisaThanks ladies for all the great information. I wasn't looking for medical advice; (I know you can't provide it) I was just hoping that I could hear some stories from other people with migraines. Even though I live in a city of 2 million, I know of only one other person that has migraines, and she's a lightweight compared to me). I was just looking for someone to say, "Yes, I've experienced too and you're not alone."
As for MOH headache, I'm really careful about that. No more than two meds in a week. I was broke of a MOH in 2013 and that wasn't pleasant. That's one of the main reasons I chose alternative pain theories. I don't take opioids except for stadol once a month when I get a namst headache and my headache dr's office is closed. And then I get dilaudid. Which breaks the pain cycle.
