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.
Picnic with Ants 
Hang in there,hopefully the neurologist can find a solution for you. It goes in a circle doesn’t it? One thing stressing another thing until everything is affecting everything if that makes any sense.Hoping for better days for you soon.
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Thank you for sharing. I am not sure I mentioned this before. I do find that the earth and weather adds to vertigo. When we have bad storms or a swift weather pattern change, I may have some issues. Thankfully fewer now, with an increase in a vision migraine which is very scary. I hope you are having a better day today.
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You haven’t mentioned it Patricia, but these crazy storms we have been having have really been messing with me. But as my headache dr says, we can’t change the weather so we need to find a treatment that works all the time. I hope the vision migraines stay away. What are the symptoms? I have an aura sometimes. I’ll see black spots. Sometimes it look like something flashed beside me but when I look nothing is there. Your symptoms are much different right?
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Yes different, It almost feels like the vertigo but in the eye, hard to explain. The vision migraine started about 2 years ago, suddenly I can not see everything, it becomes very blurry and I have to close my eyes. It lasts about 5-10 minutes, seems to be mostly in the right eye where I have a astigmatism. It has happened to me when driving and I need to pull over sometimes. I just recently found I have floaters too. There is no warning it just happens. I have great Dr that watches me closely. It is very scary.
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It sounds scary. I have floaters too, normally they aren’t a problem. I’ve had them as long as I remember. I’m so glad you have a great dr. I hope those stay away.
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This sounds miserable. I hope you get some relief very, very soon!
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That just totally, totally sucks! 😦
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Hello friend… I’m sorry you have to experience all of that pain. 😦
Hugs
-Kelly
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WOW Wendy! What an ordeal. What amazes me is that with all you have going on you are able to post in your blog consistently. What a great example of not letting those ants get in the way of getting your words out. Many, many gentle hugs and oodles of love to you and yours. xo.
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Well Lisa, most of my post recently take almost week to write. If I have good days I may write more then schedule it to post later. On days I can take meds they often worked enough to get the pain way down, but every day for at least part of the day I have been over a 6. It’s the vertigo returning that will stop me from keeping up. Love you. Hugs to you and J.
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I don’t suffer from the same medical conditions as you, nor do I take the same medications (except aspirin, which is also an NSAID). But since we both suffer from chronic pain, I figure there are some similarities.
I don’t suffer from vertigo, but sometimes the pain gets so bad that it kinda feels like I’m on a roller coaster ride, going down very fast. Like in my head and stomach. It doesn’t last very long, but then I don’t suffer from migraines. However, most of my pain is in my head, where there’s a pressure that’s hard to describe. But I think it’s a pressure — caused by chronic head pain alone — that can be part of the cause of vertigo.
Not that this information is helpful in any way, just thinking out loud. 🙂
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I think every bit of information helps us.
I don’t take any NSAIDS if I can help it, I’ve had an ulcer, they tear me up!
I too Tylenol during my hip surgey, but not much. And I do have Toradol injections, those injections don’t hurt my tummy. I can take it by mouthtoo, but I have to of just eaten, and I can only take 1 per day.
I get the drop vertigo. It can last longer than just a bit though. I’ll feel like I’m free falling, scares the crap out of me.
I think intense pain can cause vertigo, just like migraines do…probably for different reasons.
The odd thing, the vertigo only seems to happen when the pain is better recently.
Like on and off all day yesterday and today.
Right this second a better moment.
Thank you for sharing.
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That is odd. Maybe the vertigo has more to do with the pressure in our ears than the pain. The feeling reminds me of this amusement ride that goes round and round and round… and which I got sick on when I was young. 🙂
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Oh yes, the rotational vertigo is the worst. Round and round. I know most of mine is ear related. Meniere’s can be an evil thing. I hope you never experience again.
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I didn’t know there were different kinds of vertigo… how charming. 🙂
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Wendy, Your headache scale is a brilliant visual. I think you could sell it to doctors. It not only shows headaches but could be used for any painful experience. Even though you have suffered with all that has been happening to you physically you are still a talented graphic artist. When I saw it I was blown away.
So hope you find relief soon from those debilitating headaches.
Sending love, judy
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I agree 100% with all of this.
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I had my monthly 4 day migrane with associated vomiting last week. I wish you didn’t have any pains to deal with that are that bad 😦
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I’m sorry either of us have to deal with this pain. There is a drug that my migraine dr used to give me that would help with the monthly migraines. I can’t think of the name of it. But maybe you should mention to your dr to see is they can give you anything that might lessen these. xo
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Topamax maybe??
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Was on it for a long time. They think that’s what caused my seizures. Since I’m off, they stopped.
Who knows what the next step will be.
Seems like every 4 months I go through this now.
Steroids have stopped it, for now.
Thank you for trying.
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I’ve had vertigo for long periods of time, and I get many migraines, but I’ve never had both at the same time. I can imagine what it must be like, but I can’t think about it for too long. I’m so sorry you are struggling with this.
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peanut free migraine mom – I just wanted to put out there in case you didn’t know. You can have vertigo caused by migraines without pain. Crazy I know!! I do have both at the same time, but sometimes when I don’t we have no idea if the vertigo is being caused by Meniere’s of migraines.
I’m sorry you have to struggle with any of it, together or not. ❤
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I have wondered if my vertigo was actually part of migraines. The doctors thought it was BPPV at the time, but after 8 months of doing the Epley maneuver, it still wouldn’t go away. I finally just decided to never sleep on my left side (which is when I would get the vertigo). My vertigo went away after that, but the migraine pain started a couple of months later. Is your vertigo dependent on the position of your head?
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No mine isn’t dependent on the position of my head, unless I’m having BPPV, I have had it a few times, but right now that’s better.
There are other treatments for BPPV than the Epley. If they don’t figure out which one you need, it won’t go away. Many think the only treatment is the Epley, but that’s wrong. I can get you more info on that if you want.
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More info would be great! I never could find a doctor who really helped me with it, so I just gave up. Currently, I sleep on my right side (or a recliner), but my right shoulder and hip won’t tolerate that forever. However, I don’t currently have vertigo either (probably due to not sleeping on my left). Someday, I may get up the courage to try something else (when my hip gives out), but I really avoid the vertigo at all costs for now. I had it from time to time for 15 years, but solidly for 8 months a couple of years ago. During that time, I developed insomnia and anxiety. It was so awful that I eventually collapsed and broke out teeth. It might be hard to convince me to go through something that takes me back to that time.
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I hope you don’t mind but I just send you an email. I thought it would be easier than listing things here. 🙂
Feel free to get in touch with me about anything.
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