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Newbie, any thoughts GREATLY appreciatd

First of all thanks for reading, this is the first forum I have ever joined and I have been on here over an hour already reading different stories. The love, compassion and support that I've seen on here is amazing.

Sorry this is so long, and maybe I am in the wrong category, but I am still learning.

Ok here is some background. I am a 30 year old female, had a hysterectomy 2 years ago, suffer with severe depressive disorder, OCD, and generalized anxiety disorder. I've had 6 suicide attempts since age 16.
HOWEVER, the current medication regimen I am on has kept me "stable" and symptom free for almost two years which is an amazing feat in itself. I found a psychiatrist who is amazing and have been in tons of counseling-I tell you all of this so you can get a mental picture of where I am, and know that the mental issues I have have all been addressed and are in control.

Ok enough background, onto my current issues.
About a year ago I got the first migraine I have had since I was in my very early 20's. I had 8-10 nerve blocks and went to four neurologists, none of which were willing to help me explore my options. Basically they didn't know what to do therefore I "couldn' be helped". I have been on Neurontin, Topamax, and many other maintenance drugs with a whole other army of rescue drugs. I finally quit taking Neurontin and Topamax because I was having MAJOR cognitive side effects, I was losing words, and everyone around me knew something was major wrong. I would know what I was trying to say but couldn't find the words.

Now finally my question-how many major headache days are "acceptable" My migraine is always there, but stays at around a 4 on normal days and that is something I can learn to live with, however I am having approximately 2 episodes a week that last between 2 and 10 days. I realize the length of mine is not a typical migraine, however that's where I am at right now, and was just curious what other's thoughts were regarding am acceptable number. At this point if I could get to having one headache per week I would be more than ecstatic!!

Thanks for any and all thoughts/advice!!

  1. Welcome to our forums and thanks for the great introduction. You've come to a great place to get support and learn more about migraine.

    Let me start by stating that daily pain, no matter how mild, is not acceptable. Your doctors did you a disservice by giving up just because your case is complicated. Shame on them! In order to get the best treatment (and the best results) you need to see a true headache specialist. Not all neurologists are headache specialists, even if they have a lot of headache patients. Some headache specialists are actually primary care doctors, psychiatrists, ENTs, or pain management specialists. The difference is that they have been specially trained in the diagnosis and treatment of all headache disorders, not just migraine. This is important because many patients (like me) have more than one headache disorder. That can make the successful treatment of migraine a lot more complicated. Also, these specialists know what comorbid conditions to look for that can make migraines more difficult to treat.

    For example, I have sleep apnea and I didn't know it until just a few years ago. Once I started using a CPAP at night, I stopped getting most morning headaches. I still get migraines and cluster headaches, but I rarely wake up with head pain anymore. Treating the sleep apnea helped me with headaches.

    Depresssion and anxiety often occur in patients with migraine. The neurotransmitters responsible for affecting our mood also affect our pain perception and contribute to the brain disruptions that start the migraine process. It is great that you are already being treated successfully.

    Here are a few links related to what I've written that will help you understand better:

    https://migraine.com/page/2/?s=headache+specialists&submit=Go
    https://migraine.com/blog/what-is-a-comorbid-condition-a-bulleted-list-for-patients/
    https://migraine.com/living-with-migraine/migraine-and-sleep-disorders/
    https://migraine.com/pro/pathophysiology-of-migraine/

    Please try to find a better doctor and refuse to accept the answer, "you' just have to live with it." That's a cop-out and we all deserve so much better.

    Tammy

    1. Hi Tammy, thanks so much for your response to my post. I didn't make myself very clear when talking about which doctor I am currently seeing, I am now a patient of the diamond headache clinic in Chicago, IL, and they have been wonderful. I guess my main question is what is acceptable in others opinions regarding headache days per month. I completely understand that they are not "curable" only "manageable" I started on Keppra about 3 days ago, and while this medicine is the only one so far that has given me any hope at all, the side effects are still pretty major-heart palpitations, very tired and some confusion, however I am hopeful with time my body will adjust

      1. Sorry for the delay in my response. I've been having a bad round of migraines and clusters for most of October that have kept me offline more than I'd like. In the blur, I misplaced the location of your post and just found it again. I'm doing better now.

        I think the level of "acceptable" is different for every person. The experts say that any more than 2 per week and you need a preventive. We also know that treatment "success" is when a preventive can cut the frequency at least in half. That's a pretty wide range for someone with chronic migraine. If you are getting 15 or more days of headache, then 50% still means you get 2 attacks each week. That may be great if they are mild and can be stopped quickly with abortive meds so you don't lose the entire day. But if you are down for the entire day twice a week, migraines are still interfering with your life quite a bit.

        For me, a successful treatment would be one that keeps the attack frequency down to fewer than once a week and quickly aborted with medication. I get those weeks every now and then and really enjoy them. To see that happen on a consistent basis would be amazing. So that's what I'm shooting for. I will keep pushing my doctors until I get to that level or better as "baseline" because that's a level that would allow me to function best and make solid plans.

        Hope that helps.

        1. Hi, Tammy hope you're doing well, and thank you for responding again, can't tell you how much it means to me. I agree with you that everyone's "normal/acceptable" is different. Since my last response my medicine have been changed again and I am off Relpax as it had some really bad side effects for me. I am still trying to find one that works well, as for abortives the Migranol nasal spray and baclofen work better than anything else, therefore those are what I stick with. I am currently still having 3-4 days a week that I am completely down (vomiting, aura, dizzy, ECT), and my headache never goes away but it does lessen to where I can function. Still learning my new normal and get frustrated as does everyone, but I'm working on it 😀 have a great day/weekend and thanks again for replying to me.

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