My diagnosis is Chronic Migraine. I have been told that in order to be diagnosed with Chronic Migraine one must have more than 15 days per month (for at least three months) with migraine. I have also been told that most of “us” with this diagnosis have far more than 15 days per month with migraine. That certainly is the case for me!
I wonder if there are others who share this diagnosis?
I have worked with a number of neurologists over the years and been on just about every prescription medication used in the treatment of migraine (preventative & aboritive). None of these really seem to be effective for me.
The latest treatment is Botox injections. I am two weeks out from my second series of injections. I think there was some improvement (lessening of intensity and frequency) after the first series. I am hopeful I will experience this again after the second series.
I would loev to hear others’ experiences related to Chronic Migraine!!
Welcome to the discussion forum! Please forgive us for not getting in touch with you sooner. Let me see what information and support I can help you with now. How does that sound?
Many people here are diagnosed with migraine that has become chronic. You’ve got the “lingo” down pretty well and as you will find it is very important to become an educated patient. The more we know about our disease, the better we will be able to manage it and find treatments for it.
I do want to tell you not to give up on migraine prevention medications just yet. There are over 100 different medications that can be used to treat migraine disease and it would take about 25 years to go through them all if we were to try them at the correct dose and in the right manner. Here is information on migraine prevention medication; https://migraine.com/blog/migraine-management-essential-4-preventive-treatment/.
First, let me talk just a bit about the experience of the actual injections. Honestly, both my first and second round of injections were not that bad. After having nerve blocks and other invasive procedures these small injections seem pretty minor (especially in comparison to the pain of migraine). Yes, there are a lot of injections, but each is very small. Of the whole round there are one or two that seem a bit more tender and sting a bit more than the others, but nothing significant. I have not experienced any negative side effects like muscle weakness or droopy eye lids.
I am about four weeks out from my next round of Botox injections for Chronic Migraine. This will be my third round of injections. I can say that I have experienced more positive change from the Botox than from any other treatment I have tried to-date. I will not go through my whole list but let’s just say that over the last twenty years of working with neurologists and other healthcare professionals I have tried many, many treatments (lots and lots and lots of medications).
Here’s what I have experienced with the Botox. For me it seems to take two and a half to three weeks from the injection date to see real improvement. This improvement usually eases in gradually over a couple of weeks. At its best I do see a reduction of both intensity and frequency. The greater reduction is in frequency. I would say at the best I see something close to a 40% reduction in frequency. There is a reduction in intensity as well, but that is not as significant. At its best it may come close to a 30% reduction. Don’t get me wrong these are great numbers, especially considering that all previous treatments have had no impact.
So, starting at about three weeks out I start to see improvements. The decrease in frequency and intensity carries for maybe four weeks at its greatest. At that point things start to slide backward with the improvements eroding away as frequency and intensity start to ramp back up. This trend continues as I move toward the three month mark (when I can go for the next round of injections). This is the hard part. Having experienced some relief makes sliding back into a greater state of sustained pain all the harder to deal with. This is where I am today. The effects of my last injections have significantly eroded at this point and my pain is increasing, as is the frequency. I find this draining, frustrating, depressing…
I know that relief is about six to seven weeks out at this point (four to the injections and another three for the improvements to show up). Honestly, that seems like too far away as I sit here, today, with another migraine.
My current research and efforts at finding complentary treatments are focused on something to supplement the Botox. I would love to find something that could help the Botox at the best times and help to control things between the injections. So far that eludes me. I will also add that my current neurologist is very compassionate and, importantly, is board certified in headache medicine. I definitely see this as important when dealing with Chronic Migraine.
I am sure to post another update after my next Botox injections in August. I have read that some people experience greater benefit as they continue with the injections. I truly hope to see even greater gains after the thrid round!
I am anxiously awaiting news on this rounds of your Botox injections. I have also been diagnosed with chronic migraine. I am having a difficult time finding a good specialist. She actually became upset with me when I told her topamax was not working!
Good luck with this treatment!