Migraine

I'm planning to post here as well as in the medications section... I'm trying to get ready for my next neuro appt on Monday, and I'm still lacking what I feel is a real definitive diagnosis. At my last appt my neuro started out saying CTH, then ended the appt saying it sounded more like mild migraine... while I fit more of the symptoms of NPDH. I'll be pushing him more for some definitive answers at this appt, since I've had the chance to try Topamax and a handful of abortives. I'm also planning to ask about some possible "rescue" meds to try. I feel like 1. I'd really like to experience some pay free time 2. Maybe if I could break the cycle, things might change.

I'm confident that I've experienced some migraines, I just don't know that that's my real/constant problem. My question is this, for those of you who aren't struggling with migraines, or for whom that isn't your primary headache problem, do you use "rescue" meds? If so, what types tend to be more common? I've not have success with any NSAIDs I've tried... very little with Darvocet... none with Codeine. Is the rescue med thing just for use with migraines?

Candace,

What a lot of good questions you are asking.

First, have you seen the article on NDPH ? It is really informational if you haven't.

I have been diagnosed with NDPH since Feb '06, but I've had it longer. I also have migraine without aura. Since I've seen my current headache specialist, he has always prescribed at least one preventative and a couple of rescue meds. I've tried several. When my NDPH was worse, I didn't find a rescue med that "broke" the headache per-se. I've taken rescue medications that decreased the pain's intensity (i.e. muscle relaxers, NSAIDs), but not totally take the pain away.

My NDPH didn't start to decrease until we found a preventative (this past Aug.) that helped it. This preventative didn't affect my migraines at all, only my NDPH. Go figure.

It seems to me that in order to get a handle on what you're dealing with it would be good to start with a diagnosis. Then you could go from there. Are you seeing a migraine/headache specialist? Not all neurologists are created equal and may not be up to date on diagnoses and current treatments.

I hope this helps. If you have any other questions, ask away.

Kelly

quote:

Originally posted by Candace:
Is the rescue med thing just for use with migraines?

Oh, I just realized I didn't answer this question.

Here is a good article on Preventative, Abortive and Rescue Medications -- What's the difference?

It talks about rescue meds in reference to migraines. But, rescue meds are basically pain medications. So, no, they are not only used with migraines.

Kelly

Hi Kelly,

I've noticed by browsing the boards that you seem to be the only active person with a NPDH dx. I asked my neuro about this and he seemed to shrug it off, I think maybe he doesn't use the same dx sets as whatever that exists within? That's what he sounded like. I'm not thrilled with him, but he is supposed to be a headache specialist...

http://www.headachebalance.com/

I have another appt on Monday and I'm trying to push him for a definitive dx... I'm going to ask him again about the NPDH, because I've been doing the head between the leg test more often now since Terry and others mentioned it and most days, it doesn't make it worse, unless I stay like that. Now, when I've had an definite aura, or crazy sound sensitivity and really horrific pain and getting up to walk hurt and I wanted to crush my head every time I moved at all.. I feel confident those were migraines... but I feel more and more like that's not what's happening all the time. I just don't quite feel ready to take the leap to going out of network with my health insurance.. traveling so far... taking such a chance with a doctor I don't know to do the same thing, trying meds I don't know will work... it definitely seems like I don't have the right doctor, but I guess I'm just not ready to take the leap to go through so much for a better doctor, because I'm not sure that a dx will do so much for me.

I'm trying out Topamax, which is the drug I wanted to try after reading about NPDH on this site before my last neuro appt. While I don't feel that a dx would help me get better any faster, it might help me feel more sane... that I'm not an anomaly. It was nice to read the article (it's actually how I found the website in the first place a few months ago!) I've figured out that I have to know what I want in my health care, because no one else is going to look out for me! It's disappointing to hear that the rescue meds aren't more helpful for you... but I still feel like it's something that's missing in my treatment plan. I'm hesitant to be hopeful about them though, since I've not had good luck with pain meds lately. So far my theory is that I haven't been on any muscle relaxants, so that might be a logical direction to explore. ??

Hi, Candace,

NDPH is relatively rare. It seems to me that we have more than one member with the diagnosis, but remembering who they are is another matter entirely. Sorry.

You commented, "think maybe he doesn't use the same dx sets as whatever that exists within?" Do you mean within this site and forum? If he's a headache and Migraine specialist, he certainly should use the same dx sets as we do. We follow the International Headache Society's International Classification of Headache Disorders, 2nd Edition (ICHD-II), which is the gold standard for classification.

I've never heard of your doctor before, and I'm NOT saying anything negative about him. Still, you need to be aware that there are, unfortunately, a few doctors out there who call themselves specialist when, in fact, they know little about headache and Migraine. You might ask if he's a member of the American Headache Society and if he has taken the exam to be certified in Headache Medicine.

I am not impressed by his description of Migraine. He has indeed started with the IHS criteria, BUT he has changed it. His repeated use of the term syndrome is unusual for anyone who is a specialist in the field.

Specialists differ in their theories about head pain. I always thought I had two types of headaches: tension-type and migraine. My new specialist thinks that all my head pain is migraine, and I'm to treat all my pain as migraine.

I used to figure that pain below a 5 was "background pain," to be tolerated. She wants me to treat when the pain is between a 1 and a 3, with a muscle relaxer. When it gets between 4 and 6, it's a triptan and an NSAID. Of course, the triptan/NSAID cocktail is limited to 3 days a week. The more aggressive treatment is helping. Don't try this without talking to your doctor. He may have other preferences. There are many ways to treat the same symptoms.

You'd be surprised who might be in-network for you. I have Blue Cross Blue Shield of Mississippi. My specialist is in Nashville, but she's a Preferred Provider for BCBS of Tennessee, so she's in-network for me. All I pay is my "specialist" co-pay of $40.

There's a quiz on the site to help figure whether your doctor is right for you. Go to the home page. In the Manage orange box, click on Working with Doctors. Scroll down to the last link. It's the quiz. It doesn't take long, and I think it's pretty good for evaluating your doctor. My current specialist gets a 9 out of 10.

Hang in there!

Gretchen in Mississippi

Well Terry, you don't have to say anything bad about my doctor, I can do all of that for you... I'd say straight out, I do not like him. I was so excited to see him the first time, after seeing his website... just hopeful because it said "headaches"... and hoping someone, anyone would help me, but he is the king of the five minute appointment. I took my husband with me last time, he guarded the door and we squeezed 12 minutes out of him. I took a list of questions (which he stole from me, but I had it memorized, and rehearsed). Gretchen... I think he scores about a 3 or a 4, but honestly I don't know how to answer most of the questions, because we haven't discussed so many of the topics.

I have a long list of neuros to choose from, but none of them are the recommended ones from this site, and I've been hesitant to just start choosing from the list... I have an HMO and everything takes a million years... and like I mentioned before, it kinda feels like everyone's just doing the same thing, here, try this preventative... oh, that doesn't work? Here, try this one... now this one... now this one...

Which is why I've taken it upon myself to educate myself. I figure if I've predetermined what path I want to try next it doesn't really matter if my doctor is so egotistical that he can't listen. I don't know that if he listened, it would make a difference in the headache... I realize it would make my appointment nicer... but since it might take 3 months to get to that appointment and that would mean three months without meds... does that make sense? I feel like I sound so negative, but I also feel like this opinion has come to me through a very logical path...

On the topic of rescue meds though... does it seem logical considering what I've tried in the past that a muscle relaxant might be a good direction to go in?

{{{{{{Candace}}}}}}

Bless your heart! I've been where you are. I got special approval from our insurance company to go to Dr. Young in Philly. They paid for a while; then they quit paying, and we paid out of pocket. Paid the appointment fees on top of a hotel room and driving 8 hours to get there. It's a royal pain, but it was so worth it. Dr. Young helped me get my life back. Took me from five nasty Migraines a week to getting up to three months between them.

Muscle relaxants can play many roles. Some are pretty effective for some people as preventives. Yes, some people use them as rescue meds too.

You're going a great thing for yourself by educating yourself. I truly believe we do far better when we take charge for our health and our care. Here's my summary...
Optimal health care can be achieved only when patients are educated about their health, and patients and physicians work together as treatment partners in an atmosphere of mutual respect.

I really applaud you, Candace. We'll be right here to do anything we can to help you on your journey.

quote:

Originally posted by Candace:
Well Terry, you don't have to say anything bad about my doctor, I can do all of that for you... I'd say straight out, I do not like him. I was so excited to see him the first time, after seeing his website... just hopeful because it said "headaches"... and hoping someone, anyone would help me, but he is the king of the five minute appointment. I took my husband with me last time, he guarded the door and we squeezed 12 minutes out of him. I took a list of questions (which he stole from me, but I had it memorized, and rehearsed). Gretchen... I think he scores about a 3 or a 4, but honestly I don't know how to answer most of the questions, because we haven't discussed so many of the topics.

I have a long list of neuros to choose from, but none of them are the recommended ones from this site, and I've been hesitant to just start choosing from the list... I have an HMO and everything takes a million years... and like I mentioned before, it kinda feels like everyone's just doing the same thing, here, try this preventative... oh, that doesn't work? Here, try this one... now this one... now this one...

Which is why I've taken it upon myself to educate myself. I figure if I've predetermined what path I want to try next it doesn't really matter if my doctor is so egotistical that he can't listen. I don't know that if he listened, it would make a difference in the headache... I realize it would make my appointment nicer... but since it might take 3 months to get to that appointment and that would mean three months without meds... does that make sense? I feel like I sound so negative, but I also feel like this opinion has come to me through a very logical path...

On the topic of rescue meds though... does it seem logical considering what I've tried in the past that a muscle relaxant might be a good direction to go in?

Thanks for the kind words, Teri. I guess it feels like finding the right doctor is just as much of a lottery as finding the right preventative! I'm lucky enough to have a fantastic primary care doctor who I *love* and who goes above and beyond every time... so I take solace in that and try to learn as much as I can from him, and from places like this board.

Can you give me a little bit more background info to take to my neuro? He talks pretty fast... and very briefly on most everything... I'm trying to remember how he brushed me off when I asked him about NDPH last time. I think he mentioned something along the lines of like, oh yeah, that's within this classifications of headaches (ICHD-II rings a bell) but it sounded to me (a lay person) like he was saying it wasn't what he went by. Overall, I got the vibe that he didn't want to pin down a dx, or that it wasn't "important". For that appt, I was content to try the Topamax, since that was the plan of action suggested for NPDH anyways. I was planning to push him again but feel unsure of how to do so. I generally find that feeding the ego works better than just challenging... but since he doesn't seem to want to give me a dx anyways??

I think I may ask him about his certification. I've been pondering bringing it up in the past, but haven't yet.. and I'm not sure he's put two and two together yet, as I'm married... but he has actually seen my mom. There are only so many people out there with EDS... so he might remember... She was having seizures after her heart surgery a few years ago, along with a lot of other problems. After a 15 minute review, he told her none of her problems were neurological, but psychosomatic. Now, every doctor has a right to his own opinion, but she's since been to The Chiari Institute, dxed with Tethered Cord and Cranial Cervical Instability... making *all* her problems neurological... so it's always in the back of my head that I know he made a big mistake with her... although I'm not sure it would really help me out.

Ok, I may be a bit blunt, and I may get up on my a little, but that's only because I was struggling with this same question not that long ago and I want to share my experience with you. In fact, I just fired my latest HA specialist (doc #3) and am in the process of getting in with a new specialist (doc #4). It can be a LOT of work to find the right doctor.

But here's the thing. The right dx may not seem like a big deal if you're coming in with ideas for your doc and he's agreeable to them. And it may not be at first. One of the reasons I just fired doc #3 was because I felt I was doing *all* the work in researching and suggesting treatments, then she would say yes or no. It's not supposed to work that way, really. I don't mind doing research about my disease and treatments, BUT I expect my doctor to put in his or her fair share of work. That's what I'm paying them for.

And here's where I'm going to be blunt. Any doctor that I knew to have misdiagnosed someone as having psychosomatic problems would be fired by me, and fast. That is a big mistake, coming from a neurologist. It's one thing to come from a psychologist, whose background is in psychology and tends to think in that mindset. But a neurologist should be thinking in the context of neurological diseases FIRST. Life is too short, and pain hurts too much, to put up with that from a doctor. (This is how I feel, mind you, but I don't think I'm alone in my opinion.)

Here's the other thing. Your doc may not be telling you what your dx is, but he's still giving you one. He has to in order to bill your insurance (which I'm assuming he's doing). Whether it's the *correct* dx is a different matter, and honestly not one that any of us can tell you. But, in your shoes, I think I would be looking for a new doctor.

Finding the right doctor can feel like it's just too overwhelming, but you've got a great head start with our list of specialists here on our site. That list is based on patient recommendations. It's not a guarantee, of course, but it goes a long way toward weeding out the turkeys. I know Cindy on our board is also in the Bay Area and sees someone based out of Berkeley. We also have Dr Jerome Goldstein at the San Francisco Headache Clinic and three other specialists in southern Cali. This is a great place for you to start.

Like Teri says:

quote:

Optimal health care can be achieved only when patients are educated about their health, and patients and physicians work together as treatment partners in an atmosphere of mutual respect.

Is your doctor holding up his half of the partnership? If not, I think it's time to move on.

I'm not trying to be mean about this, I'm really not. I've been where you are. I still am, somewhat. I have a neuro who is excellent, but I've exceeded his knowledge. He referred me to a specialist that I fired. I'm working on getting in with another specialist who may or may not work out. His name is on our list though, so I feel more confident in that recommendation than any other.

We're here for you no matter what you decide to do - and we can help you make the decision if you need us as a sounding board.

MJ--

Ugh. You certainly make a lot of good points... and I think I know that you're right. I guess where I've been at is that I've poured everything I am into learning for the last six months... into being a patient. I've made all the phone calls, kept track of my records... faxed forms and charts and tests and everything I can imagine. I didn't know anything about my health and now... I can hardly believe how much I've learned. It hasn't just been a headache for me of course... as a lot of my health has declined, and I received my Ehlers-Danlos diagnosis and began having a lot more all over joint pain as well during the last six months.

In the last month and a half I've actually thought about quitting doctors for a while... because it just took so much out of me, and looking back it hasn't really helped me at all. I've gained a few things, but they've been minimal and I can take them with me (physical therapy has been the one really helpful thing for me... and now I can do everything at home!). I had three appointments in one day a month ago... which I thought would be no big deal... and I had five other appts stuffed into that same week... I figured I'm 23 years old and it's just an appt (you sit there, right!?!). But it almost destroyed me emotionally and I didn't learn anything useful. I'm in the same place I was before... it's 8 months on Friday for this headache (which I know is nothing compared to a lot of people on the board...but it has changed my life drastically) and I'm starting to think I should just accept it as what *my life* is now, instead of filling my life with appointments! It's hard to think of consuming myself with yet another huge mountain of overwhelmingness in finding a new neuro... facing the referrals dept to try to get the appt in network--or worse... out of network... learning a new doctor... talking them out of repeating tests I've already had. I don't know if I'm emotionally equipped to take on the task. I agree that my doctor should do the job--but even my PC that I love doesn't do that job... I know far more than he does about my health, EDS and what my health plan is. It's something I don't know if I can find out there. I feel I may be too complex for someone to "take on" and "figure out" Although, I admit... I have thought about trying to send "my story" into House and seeing if they at least make into a show... maybe I'll find some answers in my TV character?? I feel like I just puked my guts here.. but I didn't really know how else to respond... I want to take the step necessary... but I don't really know how to do so and still hold on to my sanity...

Honestly, as you guys have probably figured out, this site probably isn't the ideal locale for me.. I've just been trying to learn more about migraines, since my neuro mentioned them and I didn't really know much of *anything* about them. I came here just because I already had Teri's name flagged because of the NPDH article... I'm still not even convinced that my head pain problems aren't a lot more complex than they appear... as in some of the problems my mom has had. .. tethered cord and cranial cervical instability... which just gets so difficult to diagnose... or understand! But I so appreciate the warm welcome, and all of the information you've offered. I continue to try to learn everything I can.

I've looked at the specialist on the site several times.. especially Dr. Goldstein. I still don't really know what they'll really offer me that will be so life-altering that it would be worth all the trouble? Question though... do you know who at Berkley?? Do you mean UCDMC? I was looking at seeing Dr. Moghadam.. a geneticist there... I don't know why I continue to do this insane combo appt thing, but I do... maybe I should try to see someone at Berkley at the same time.

I'd say I was feeling less emotional about it--but I'm probably not... I called my neuro's office to see if I get an extra long appt... my list for him was a little longer than last time and I had so many med questions I wanted to get more than what I was told I was slated for last time (20 minutes)... only to be told I was scheduled for 10 minutes... which was all I could get scheduled for unless it was a first time consultation, which warranted 30 minutes. I could come and sit in the waiting room in case things went quickly, but I couldn't schedule myself a long appointment. I couldn't be more livid. I did ask the receptionist if she knew if Dr Helm was a member of American Headache Society (he is) and whether or not he took the exam Teri asked about (she didn't know for sure, but thinks so). I guess it kinda closes the deal for this guy... I *know* I can't win. It took me forever to change PCPs... and in the end, I wondered why I waited so long... but with 10 minutes, it wouldn't matter if I was seeing Houdini--it's just not enough time! Begrudgingly I begin my search. Have you guys found that it's totally fruitless to bother with in-network people? It's not so much that I'm totally opposed to paying out of pocket or traveling... I just know that it will be twice the bother... if I *could* find someone here who could meet my needs.

Candace,

I hope you can find someone close and in your network. I chose to see a migraine specialist that doesn't accept insurance but I'm so glad I did. After my first appointment with him he was able to reduce the length and severity of my migraines. So, while I fly to see him and pay out of pocket, it's the best decision I've made regarding my migraines in a long time.

All my best

quote:

Have you guys found that it's totally fruitless to bother with in-network people? It's not so much that I'm totally opposed to paying out of pocket or traveling... I just know that it will be twice the bother... if I *could* find someone here who could meet my needs

Candace, it sounds like you're doing all the right things on your end. You're becoming a very well educated patient willing to do the legwork required to stay on top of your multiple conditions. You're absolutely not alone in this, BTW - many of our members have multiple chronic ick. So please don't feel out of place here. You are always welcome to come visit here and post as much as you like or need, even if it's not strictly about migraines or headaches. (That's one of the reasons we have the off-topic folders and such.) And don't feel the need to compare yourself to others here, either. Headaches really can be brutal, even when they're not migraines, especially when they become chronic and constant like what you're describing. Pain of any kind is hard enough to deal with on its own, but add all this other stuff in and it just gets to be a lot. Especially when you're young like we are and you're not "supposed" to be sick.

It makes sense that you're feeling emotional about this. I had a total breakdown the same week I had my second appointment with the doc I just fired. Docs are such an essential part of our treatment, yet they're often one of the hardest parts to find. They really can be the difference between success or failure in treatment. And when you look at the long list of docs, knowing that so many of them could be turkeys, or may be totally useless, or arrogant, or rude, or egotistical, or anything - it's completely overwhelming. I think we've all been there, and that's a big part of the reason Teri and the others have put so much work into assembling the specialist list we have on this site.

I'm very glad to hear you're beginning your search. That takes a lot of courage. Here's my take on the in-network thing. Headache treatments are tricky, and require a lot of "wait and see" - try this drug, wait for a few months. Adjust the dosage, wait for a few months. It's potentially a lot of time commitment into your treatment, so I want to start that treatment with the best doc recommendation I can find. The docs on the list on this site are on there from patient feedback and because they specifically specialize in headaches and migraines. That means they stay up to date on the latest treatments and research - so *you* don't have to do all the legwork you were doing with previous doctors.

None of this is a guarantee, of course, but it at least takes some of the guesswork out of picking a doctor off the insurance list. I hated doing it that way - how is that any better than picking one out of the phone book?

And you're right, it may be an insurance nightmare. But most docs are willing to work with you to get the most out of your insurance or work out payment plans. And you can ask that upfront.

There is always the chance you may be missing a doc in network who can help you - but is it worth the effort to go through a whole list of docs who can't? Only you can answer that question for yourself.

As for who Cindy sees at Berkeley, I'm honestly not sure. She posted about her recent visit HERE. You can ask her and she'll probably share that with you.

Also, if you're interested, I'll link you to my post about deciding to change doctors. You can find that thread HERE.

to you, Candace. I know you're in a tough spot right now, but we're all here to help you as much as we can.

Candace,

How did your appt go on Monday??

I've been reading your posts here and I just wanted to send out some hugs. I feel for you and how this headache has changed your life. I can identify with you because mine started out when I was 25 and it has drastically changed my life too.

It is a long time for you to be in so much pain. It is exhausting.

You are working so hard towards your better care and you should be proud of yourself. Every step you take, every doctor you see, every med you try is a step closer to managing your pain. That is what keeps me going sometimes.

and

Kelly