I'm not convinced that I like it. I have statis migrainosis, and haven't had a moment without a migraine in 8 years. I get bad spikes, but never get below a 6/10, so I'm not really sure how to utilize the migraine tracker.
When I first saw the migraine tracker, it seemed like a good idea and I planned on using it. The problem I had with it is when I have a migraine I am in too much pain to use it and couldn't care less about the tracker - just want the pain to stop. I thought maybe I'd update it after each migraine, but mine are so frequent they seem to almost run into each other, and when I don't have a migraine I have to use that time to catch up on every responsibility I missed while I was down, and the tracker just wasn't priority. So it just doesn't work for me. I have complicated migraine syndrome: what is statis migrainosis?
Best wishes to you.
statis migrainosis is basically the same as CDH, only with migraines, and it doesn't go away, even in your sleep. .
What kind of migraine syndrome do you have, if I may ask?
I get classic migraine with aura, but in addition to the usual migraine symptoms of excrutiating head pain, nausea, vomiting, and dizzyness, I also get numbness, tingling, and what feels like electric shock sensations throughout my body. My symptoms don't ever go away completely either, even during sleep.
What is CDH?
that doesn't sound like fun. Is it Alice in Wonderland Syndrome? Or something else?
Chronic Daily Headache
I was simply told it's called complicated migraine syndrome.
What is Alice in Wonderland Syndrome and CDH?
I do find the migraine tracker helpful. I had trouble tracking my headaches using the traditional pen and paper way and my doctors would get very upset with me... and the neurologists wouldn't even treat me if I didn't have good migraine journals filled out for my appointments, they would say "well I have no information, no data, book another appointment for 2 months from now and FILL OUT YOUR JOURNAL" and i would cry and sometimes not even book another appointment...
The migraine tracker on medhelp has been a life saver because I use computers better than I use traditional pen and paper stuff. Now I always can remember to fill out my migraine tracker online since I always will check my email or facebook or medhelp account daily (or at least, daily when I'm not completely out of it) and I can remember roughly when I've had my migraines... it has taken me almost 5 years to get good at keeping at migraine journal, but now I know how to remember and what I need to remember. I also know personally what I count and what I don't count... and it has taken some trial and error to figure that out too...
I used to not understand the 1-2-3 pain level that all the pen and paper trackers that the neurologists use because... severe for me means me thinking I am going to commit suicide because the pain is so bad. For a long time, 3 meant something other than "severe" because "severe' meant something other than "severe" in my mind... "3" or "10" meant "more than 10" in my mind because, I had such horrible debilitating headaches all the time that 10 developed a new meaning to me and so "severe" meant "more than 10" or "a headache that's worse than any headache I've felt so far" or "a headache where it gets so bad that I think about self harm or suicide". It was recently that I understood that wasn't what "3" or "10" meant to the neurologists... "3" just meant disabling... a headache that prevents me from going to school or hanging out with my friends, or a severe headache. Now any bad migraine gets the "3" level, and any painful migraine at all, even if it;s not bad, get's the "2' level... and any uncomfortable head pain gets the "1" level. It took awhile to remember that a person who gets a normal amount of headaches would probably see it that way... and that's how the neurologists wanted me to record it, and they'd only take me seriously if I recorded it that way.
I also don't put down every headache anymore... I don't put down every ache in the back on my neck or every ache in my forehead. I only put it down if I think it's a migraine or if I think it was a migraine. Which requires both reflection on my part... and probably leaves out a lot of headaches too that maybe should get recorded, but I want to make sure that the most important headaches are the ones that get recorded. I always record a headache if I take medication for it. If I don't take medication for it, then I think to myself "is this a migraine or is this a low-grade medication rebound headache or is a tension headache?" if it's severe then it's always recorded. If it is not disabling and I don't take medication for it, then it is often not recorded.
Then, before my appointments, I get out my pen and paper tracker and I transfer the information from my medhelp tracker to it. Anything that is "blue" turns into a "1" anything that is green turns into a "2" and anything that is orange or red turns into a "3". They only want to know if it was a morning headache, an afternoon headache or an evening headache, so I just put the number in those boxes for the right day. Then I check off whatever meds I took on those days. I also look at how long the headache lasted and that is how I tell if I got relief or not. If the headache went away within in hour, I will say that I got "3" relief (complete relief) if the headache lasted a few hours I got "2" relief some relief, if the headache lasted all day usually "0" relief, etc. I also look at notes and journal entries to see anything important, and triggers that I mentioned because the doctors want to know that too.
At the end of the month, I look at how many acute attacks I got as well, because I am always looking to see if I fall under 15 a month... which would place me as NOT a chronic migraine sufferer anymore... which always calls for celebration! It's happened a few times before, usually once a year I'll go through a brief period for a month or two where I don't get as many headaches, and I will always celebrate that. So, I always look for successes in my migraine diary too. I think that anything to celebrate is ... well.. something to celebrate!
I can understand the frustrating with feeling like the migraines never go away so when do you track? In your case I might suggest making a note on your tracker that you are only tracking the migraines that go above 6/10. In my case, I often have lowgrade headaches... before those low grade headaches were often at around a 5/10 but the topamax I think brought them down to float around a 1/10 to a 3/10 for me (i am very lucky, i know) so... for me, I just don't count those headaches anymore and I only count the "acute" attacks of migraines that reach above that level.... or, migraines I feel the need to take medication for. so, that is what I would maybe suggest for you, use it to track taking migraine medications, and the really BAD migraines.
at least then you have something to give the neurologists... because, i find neurologists can be very rude if you don't follow their rules... and most neurologists are all about data data data! (actually though, my current neurologist is amazing and not rude at all... but, he still thinks that trackers are very important and i always bring my tracker to him and it's the first thing i give him!)
Oh! I just had an idea for you! Maybe the "Pain Tracker" would be a more appropriate tracker since you have statis migrainosis, which is also a chronic pain condition.
I use the pain tracker as well as the migraine tracker and I find it very helpful...
With the pain tracker you can track where on your body you are feeling pain and the over-all level of pain you felt that day... so, that might be more appropriate in your case, as you might have 6/10 DAYS and 8/10 DAYS as opposed to 6/10 HOURS and 8/10 HOURS.
It might also be helpful to you because you can also "Add a point of most pain" on any given day which is good for tracking what side the migraine is on the day if your migraines tend to be one-sided (mine do). I will usually place the "point of most pain" over the eye that the side of the migraine headache is on. If your migraines do change sides, then it can be a helpful tool in tracking when you have different migraines (as you always have a migraine, sometimes the only way to tell between different migraines is when they switch sides for people who always have a migraine).
With the pain tracker you can also track some common migraine symptoms such as: "Vomiting", "Visual problems", "Nausea", "Headache", "Fatigue", "Dizziness", "Appetite Changes" and "Anxiety".
With the pain tracker you can also track medications. You can track daily medications for migraines such as "Anti-depressants" and "Anticonvulsants". You can also track acute migraine medications such as "Triptans", "Antiemetics", "NSAIDs" and " Opiates". You can also track things we do to make our migraines less intense such as "Ice" and "Rest". And you can track treatments as well such as "Injections" and "Acupuncture" and "Physical Therapy".
Let me know if you think that the "Pain Tracker" might be more useful than the migraine tracker. I know that I find it more useful for my chronic pain than my acute pain. Hope that helps. :)
I have been using the Pain Tracker, and do find it a help, that's why I was looking at the migraine tracker, to see if it was in any way better. But I think for me I'm going to stick with the Pain Tracker and use the Point of Most Pain.
Well, I have trouble with the pain tracker, as I am too tired to pick all the body parts that hurt. LOL :) I do use the Migraine tracker even if I put the same thing in every day, as I too have complicated migraine/silent migraine, so I have been told that is what they are. What I like is that I print it out for my Dr and they seem to get the impact of how this is disruptive it is in functioning. Also I have been told it may be Hemiplegic migraine as I have stroke like symptoms.
Hope you find what works for you. :)