Sunday, May 19, 2013

Are my Migraines getting better?

By Missy Morgan Thursday, September 23, 2010

Since I am in between appointments with my Migraine specialist (I currently go once every three months), I am doing a bit of reflecting on just how am I doing? I get asked that question a lot. Just today, someone asked me, "how are your headaches?" Someone else asked me today, "how is your head doing?" It is so hard for me to answer these questions. I mean I could literally take 10 minutes to answer the question, but they really don't want to know all that. I usually decide how to answer the question based on how genuinely interested the person is. I know by now which ones really want to know and which ones are just making conversation. The ones that truly care and want to know get a much more detailed answer than the latter ones. They get very short answers.

 

So tonight, I am searching my heart and asking myself, "How am I doing?" I wrote about my last appointment with my Migraine specialist in my SharePost entitled "My Migraine Journey: Fourth Specialist Visit." I would like to share with you how I think I am doing.

 

Although my next appointment with my Migraine specialist isn't until the end of next month, I've already started my list of questions and my notes that I want to discuss with my doctor at the appointment. Here's what I have so far.

  • I learned pretty quickly that the Pennsaid that she gave me doesn't help with my neck pain, so I will tell her that.
  • I wanted to ask her about taking something to help me sleep. I decided instead of waiting until my next appointment that I would call and ask her about this. My chiropractor had suggested a homeopathic drug so I called her office and left a message for her asking about it. Her response to that question was absolutely not. I also asked her in that message about Melatonin. She said I could take it but that when I came back to her she would take me off of it. Something about it disrupts the sleep pattern. I didn't understand the explanation but if she was going to take me off of it anyway, I didn't see the point in trying it the Melatonin. And since I respect her opinion the suggestion from my chiropractor went out the window as well.
  • I also wrote down to ask her about my neck pain again. I keep wondering if there are more tests that could be done to check out my neck or is all of the discomfort / pain from the Migraine itself. It probably is just from the Migraine based on what I have read, but I will probably ask her anyway.

Now would be a good time to point out that I am not an expert when it comes to Migraines. I may be an expert Migraine patient but that's about it. I am just here trying to share my story in hopes that someone else who is struggling can learn something helpful and hopefully be encouraged.

 

So back to how I am doing. Overall, I really think I am better. My mind is much clearer which I am thrilled about!!! I don't know if it is because the Migraines are less intense or it is because we increased my Celexa from 10 mg to 20 mg / day. But I am thrilled to be thinking more clearly more often. A friend of mine asked if it could be because I am taking less medication.

9/28/10 11:32am

I'm glad to hear you're at least on the road to getting better, if not getting much better.  I personally consider any improvement to be a big step.

 

As for your next appointment, since you experience neck pain and sleep problems, maybe ask your doc about Zanaflex.  It's a muscle relaxant often prescribed for sleep problems (off-label).  Since you have neck issues too, might be something worth trying out.

 

That's weird about the melatonin messing up your sleep. It's helped mine so much.  But admittedly, it won't do anything for you if you don't have a melatonin imblance, which I did.  A major one.   But I'd definately trust your doc's opinion on that.

 

I'm glad to hear your head has cleared up too. I'm sure a lot of that is not being in so much pain.  I know the more pain I'm in the more useless mentally I become.  Plus, if I have a lot of migraines back to back, the cognitive impairment seems to hang around. 

 

Good luck and I can't wait to read about your next appt!

-Kelly

Anonymous
kmacd
9/30/10 8:30am

Missy -

I enjoyed reading your post. I can totally relate to many things you said.

 

I wanted to ask you about/comment on something though. Your doctor has told you not to take the abortive unless the pain gets to a 6 or 7? One of the things my migraine specialist has reiterated over and over is that it's really important to take the abortive early, before the pain gets too severe. If you wait too long, it's too late for the abortive to be able to help basically. It's certainly hard to balance and judge sometimes whether a 2 or 3 is one that is going to escalate and that I should treat or if I need to let it go and just ride it out. I am still at the point where I can't treat every migraine with an abortive (I get more than 6-8 a month still), but I am getting better at knowing when to treat and treating earlier. I do think this has helped.  Just something to think about I guess - we all learn different things from different folks!

 

Hang in there and I hope you have a GOOD day!

Katie

10/ 6/10 8:44pm

Katie,

Thank you for reading my SharePost and thank you for your kinds words of encouragement.

 

You raise a good point.  I'm glad you brought this up.  Yes, it is important to take an abortive early for it to work properly.  And my doctor has said that "when" I have a pain free day from the shoulders and up (a whole day!), the next day she wants me to walk around with my triptan in my hand ready to take it at the first sign of a migraine...the first twinge of pain.  But, I haven't gotten to the point of having a pain free day yet.  But, I'm hopeful that I will get there.  I'm guessing (I don't know this for sure) that for people that don't have chronic migraine they should treat their migraines sooner. But since part of my problem (and how I believe I got to this point) is the overuse of medicine I have to now treat very rarely with medicine if at all possible. I hope that makes sense.  I've wondered the same thing, but at this point I am trusting my doctor and listening to what she tells me.  But I also know this is just my personal prescription for treatment. I wouldn't want anybody to read what I am doing and think they should "ditch" what their doctor has said and do what I am doing.  We are all on our own journeys.  And remember I am a migraine patient like you.  I am not an expert on migriane disease.  I'm just learning as I go along just like the rest of you. 

 

My best to you. 

Missy

9/30/10 11:17am

I am so sorry to read about your daily headaches.  It's like living in a cloud.  I know.  Several years ago I was up to 22 headaches a month myself when I changed neurologists because mine closed his practice.  In the years prior to seeing this new neurologist I was in the hospital on three occasions for 5 days each for migraine drug treatment.  I was disappointed that I had to change but didn't know that this was a blessing in disguise.  My new neurologist had a totally different approach for me which changed everything.  My neck was a problem, like yours, (I have pinched nerves all the way down as it turns out) and he put me on a very mild muscle relaxant, 2 mg, every 4 hours.  I also take two just before bedtime to help me sleep.  He also said I have a daily migraine syndrome which I have had for years and put me on the low tyramine headache diet put out by the National Headache Foundation (www.headaches.org).  I followed the diet religiously and also cut out caffiene and diet coke and within 6 months I had one month that was headache free.  I already was on topamax as a preventative (still on it) and take Relpax for the migraines and an occasional Percocet.  Now I have 3 - 4 migraines a month (mild) because I slip on the diet occasionally and sleep habits are dicey sometimes.  The diet is important for me because foots do trigger my migraines.

 

Regarding sleep.  I had a sleep problem for years - did the sleep study thing and even group therapy to try to work it out without success.  You know what it was?  Well I realized that when I slept in a really good hotel with a pillow-top mattress, I slept like a dream, so my husband and I bought one and that was it.  Now I have no problems with sleep. 

 

I found out that not all neurologists think the same.  My first neurologist was the top guy at a large medical center and he taught all the other neurologists and they all just prescribed drugs.  The second one was from another city and another hospital and he had a totally different approach - one that made more sense for me.  A second opinion might make sense for you, too.  It wouldn't hurt.  I just suggest going to a totally different place where the approach might be different.  I wish you all the best.

10/ 6/10 8:54pm

Hey, Nancy!

 

Thank you for reading my SharePost.  I appreciate it.

 

I wanted to take some time to reply to some of your comments.  At this point, I am not ready to give up on my current doctor.  I am really impressed with her and I think she can help me.  I'm still in my first year of seeing her so I will give it some more time.  I think choosing a doctor...especially a specialist is such a personal decision.  I certainly think we should keep ours eyes and ears open and be "open" to changing doctors.  I have seen a neurologist that didn't specialize in headaches or migraines. That was a joke and a total waste of time!  My first experience with a migraine specialist wasn't a very good one.  Unfortunately, she allowed me to take medicine too often which probably made me worse instead of better. But she had some really good qualities and b/c of those good qualities I stayed with her longer than I should have. And, I didn't want to drive even further away for another specilaist. From my experience, don't let a little distance keep you from changing specialists.  It is SO worth travelling a little further if you find a good specialist. Sorry, I got off track there. :-) 

 

My neck has actually been better this month. I actually think the neck pain is only a problem with me when I am having a migraine or right before. 

 

I have changed my diet drastically during my migraine journey, but I am planning to talk about food triggers at my next appt.  Thanks for bringing that up! 

 

We do have a pillow top mattress. That's interesting that a  little change like that made a big difference in your migraines. Interesting and wonderful!  I've been experimenting with my pillows trying to see if one affects my head the next day or not? 

 

I am thrilled to read of the progress you have made. That is wonderful! Thanks again for reading my SharePost and for your comments.

 

My best to you!

Missy

10/16/10 10:48am

Hi Missy,  Thanks for considering all of my comments.  Just wanted something.  I have a friend who was having migraines and wasn't seeing a doctor.  I gave her the diet and all she did was cut out the deli meat and that did it for her, that was her trigger.  You can go on line all by yourself, be your own advocate, after all, you are the one having the headaches, not your doctor, and get the diet.  Take a look at it.  It can't hurt.  Right now, I haven't had a headache in almost a month.  Wheee.

 

Good luck.

 

Nancy

 

 

10/16/10 8:54pm

Hey, Nancy!

Funny you should write this today. My latest share post was published today. This week, I talked to my Migraine specialist about food triggers and I now have a list of foods that are allowed for me to eat and foods that are not allowed. I have been going over the "allowed" foods and making lists of sample meals. I'm planning to start on Monday. There seem to be several different migraine friendly diets. I wanted to do it under the guidance of MY Migraine specialist, you know?  I've cut out a lot of foods before on my own, but not exactly like this. I'm hopeful that I may learn something!

 

Wow, you haven't had a migraine in a month. That is absolutely awesome!!!

Yay for you!!! Take good care. Thanks for reading and posting.

 

Missy

10/ 4/10 7:01pm

Kelly,

Thank you for reading my post.

 

Zanaflex is actually one of the drugs that I can take for my migraines on the days that I cannot use my triptain.  I can use it up to two days a week.  I use it some times when my migraine escalates in the late evening.  If I have to take something so I can sleep, I do like to take the zanaflex. It is one of very few drugs that actually make me drowsy!  Sometimes that's a good thing. 

 

I've not been tested for a melatonin imbalance.  I wish I remember exactly what my doctor said about the melatonin.  The "jest" of it was that it interferes with your sleep pattern and she didn't like that.  And since she said she would take me off of it at my next appt., I didn't see the point in even trying it, you know?

 

Thanks for your input on the cognitive impairment. I am seeing that more now since I am having some better days. (realizing how unclear my mind is on bad migraine days).  It helps so much to hear from others that know what we are going through and can relate.  That's why I appreciate this site so much.  It's a wonderful tool for information as well as support.

 

Thanks again for reading.

Missy

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By Missy Morgan— Last Modified: 10/16/10, First Published: 09/23/10