Thursday, August 16, 2012 justinewest asks

Q: Hi, I'm new on the boards and I need help! Here and in life.

Hi, I'm new on the boards. My name is Justine and I am a 37 year old woman livning in Los Angeles. I was trying to introduce myself on the forum but I couldn't figure out how to do it. I have a terrible headache on top of it which is making it harder to figure out what to do. I need help

Teri, I am reading your book and it is really inspiring to me. I have been a lurker on headache boards for the past year and now it is time to join because I am getting frustrated by the medical care I've had and I feel very isolated with my daily headaches and migraines. I am also not confident in my diagnosis which is chronic migraine.

I am working with Dr. Graff-Radford in LA but I am at a point where I want to see the best possible doctor I can and I will get on a plane and go anywhere. I have a four year old daughter and a one and a half year old son and I feel like I am missing out on their lives. My headaches started after the birth of my second son so it has only been a year but they rapidly became a daily problem due to many stressful situations.

My main questions are: does my headache pattern sound like chronic migraine? And is it time for me to find a new doctor? Again, my headaches started a year ago after I abruptly weaned from breastfeeding and with compounding stressful situations went from once or twice a week to daily in a matter of 3-4 months. I have tried topomax and notriptyline and am currently on cymbalta. Topomax worked for one week and then stopped working. Nortriptyline did not work. Cymbalta seems ok. The severity of my head pain has decreased overall but the frequency is still daily. Also, I was in a deep depression and full of panic when I first had the headaches - from November through March - and now my depression is stable but I still feel much distress and lonlieness and fear.

I just tried botox - it's been 10 days - and I have had worse headaches for the last five days. I just don't know what to do next. Sorry for the rambling post. I hope someone can help guide me in the right direction.

Thanks so much, Justine

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Answers (6)

Teri Robert, Health Guide

8/20/12 11:23am

Hi, Justine,

Sorry it's taken me a bit to get here and reply to you. I was in DC doing a show on NPR when you posted last week, but I'm here now!

Chronic Migraine doesn't mean Migraine every day. It means 15 or more days a month of tension-type headache or Migraine, at least eight of which must be Migraine. You can read more in Chronic Daily Headache - The Basics. Maybe that will help you with your quandary over whether your diagnosis is correct.

With your Migraines starting after you ceased breastfeeding, it's entirely possible that your main trigger is hormonal. Stressful situations can add to that, BUT please do yourself the enormous favor of looking for underlying triggers in stressful situations before assigning the blame to stress itself. Look for things such as not drinking enough and becoming dehydrated, irregular eating schedules, messed up sleep patterns, disrupted sleep, and crying. I'd have swork that stress was a trigger for me until someone else gave me this advice, and I found those triggers during stressful times. The good thing is that those are mostly avoidable triggers, so I now have far fewer Migraines during stressful times.

Do you mean that Topamax worked the first week you took it? That's really rare. I generally has to be taken for a while before it begins working; sometimes for three months. In fact, many preventives need to be taken for about three months before we can really judge if they're working for us or not.

If you don't feel you're making progress with your doctor, or you don't have confidence in him, yes, it's time for a new doctor. You can find a listing of doctors who have been recommended to us by their patients in Patient Recommended Migraine and Headache Specialists. There are several excellent specialists who aren't very far from you.

I know how frightening these Migraine can be and how lonely and isolated they can make us feel, Justine. Let me just say to you that you're not alone. You have us. We don't have all the answers, but we can look for them with you. We can be here to support you while you look for your answers. OK? I'm also going to send you a private message through your profile.

Best,

Teri

justinewest

8/20/12 2:55pm

Hi Teri!

Welcome back. I wish I could have heard you on NPR. Next time.

Thanks for getting back to me too. The other replies have been so helpful as well and I really do feel better already being on this site (mentally at least). I love your book. You are a great writer and I feel very hopeful and comforted reading your words. Last night I read the chapters on support and I do feel that my friendships have shifted but the people who are there for me are wonderful and our relationships have deepened and I am so appreciative for them.

As far as your topomax question, it started working exactly one month into taking it. I got up to 100mg fairly quickly as the only real side effect I experienced was horrific nightmares. The week it worked (if it was the topamax - my doctor thought placebo) I experienced parathesia as well which I read online was a good indicator of the drug working for someone. After that week I got a really bad cold. I had about five over the winter and spring - a nice side effect of living with a first time preschooler - and each time my migraines (as I do feel confident from your replies that it is migraine and not NDPH) would go to a 8-9. After this cold the migraines went back to daily and it seemed the topomax was not effective any longer. My dr increased me to 125mg and I stayed there for another month and then he decided it wasn't working for me and wanted me to try cymbalta. I was weaning off topomax and nortripyline at the same time while starting cymbalta and also taking 75mg of klonipin each night. I had some good days in there - my headaches improve when I start or increase an anti-depressant but then they level out again once I level off on the dose. I was at 90mg of cymbalta but now I'm at 60mg because I had nausea on the 90mg - more than normal for me.

And thank you for your words on stress. Last summer when the headaches became chronic I was literally not sleeping and just filled with anxiety and clenching constantly. My youngest was four months at the time and he was waking up five times a night and my older child gave up her nap. Our backyard was getting redone and my neighbor was harassing me. I was barely eating and my schedule was all over the place, not sleeping, crying and then I'd have a drink to relax, yeah right, and then I'd have a huge headache. My primary care physicial gave me ambien, xanax, and muscle relaxants (not to take together) and each one made the headaches worse and really didn't help me sleep. I get frustrated when people now tell me I need to work on my emotional stress. I feel like I'm doing pretty well considering I am raising a four year old and 1 and 1/2 year old in chronic pain. There is no way to not have some stress. But I am sleeping and eating well and exercising now so I feel better than I did last summer overall.

Okay, sorry to write so much. Thank you so much for letting me know you and this community are here to support me and help me along. I'm going to look into new doctors and appointments this week.

Take care,

Justine

Nancy Harris Bonk

8/16/12 9:19pm

Hi Justine,

Welcome to the site! Teri is out of town, but will be back over the weekend and be in to answer you directly. In the mean time, let me see what I can do for you. And please don't worry about rambling, you aren't, and if you were, that would be ok too!

Take a deep breathe and try to relax. We have lots of information and support to lend you so please don't feel alone - we all know how you feel, really. Migraine disease is a genetic neurological disease that can isolate and frustate. Hang in there with us.

To answer to some of your questions, chronic Migraine is described by the International Headache Society's International Classification of Headache Disorders, 2nd Edition or ICHD-II as tension-type headache and/or Migraine on 15 or more days a month for a minimum of three months. You could very well be chronic, but that of course is for the doctors to decide. If you are there are things that can be done other than what you have already tried.

I don't think doctors spend enough time with us discussing trigger identification and management. We all have Migraine triggers, which just need to figure out what they are, easier said than done, I know! Have you ever kept a Migraine diary or know what any of your triggers are? When working to identify triggers one of the best tools is a good Migraine diary. You can read more about this and download a free diary workbook in our article Your Migraine and Headache Diary. Some of us have food triggers; some of us don't. It's advisable to determine if your daughter does, and an elimination diet is the best way to do that. For more information and a workbook on this, see Managing Migraine - Migraine Trigger Foods.

It may very well be time to see a Migraine specialist. You see, neurologists may be fine doctors, but have a hard time being experts in one area. This is because they treat so many conditions like MS, epilepsy and stroke. A Migraine specialist is just that, an expert who treats one condition - ours - Migraines and headache disorders. When you get a chance, take a look at article Migraine and Headache Specialists - What's So Special? When you get a minute, take a look at our listing of Patient Recommended Migraine and Headache Specialists. I'm not sure where you live, but you may have to travel to get to a specialist. Let me know if you need help with this after you look over our list.

Topamax works wonders for some and not so much for others. Please take a look at our full Topamax profile for information on dosing, potential side effects and more. The thing about Topamax is that it needs to be started at a low dose and tapered up gradually. There are now over 100 medications and supplements that can be used for Migraine and headache prevention. The frustration of trying to find what works for us can make it seem as if we’ve tried it all, but with so many possible preventives, it’s literally impossible to have tried them all. See Migraine preventive medications – too many options to give up! for more information. So please don't give up!

Do you have anyone you can talk to on a regular basis? People with chronic illness can at times, experience depression and it is a good idea to talk with someone who can help with coping skills - it's hard to cope with Migraines! I have a counselor I speak with who has helped me tremendously.

The forum is a great place for support. To get there, go to the Migraine home page and look on the left hand side where you'll see a row of boxes. The Forum box is at the very bottom. Click on it and scroll down all the way to the bottom of that page, and you will see the log-in spot. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

I hope this helps, and Teri will be in to answer you as soon as she can.

Nancy

justinewest

8/17/12 3:23pm

Hi Nancy,

Thanks so much for your response.

I am seeing a headache specialist currently but he is not a neurologist. He is actually a dentist and I think his main specialy is trigeminal neuralgia but he heads up the whole headache and facial pain department at the Pain Center at Cedars Sinai. I saw another headache specialsist before him (Dr. Chang in Santa Monica) and she diagnosed chronic tension type headache and said my headaches were from clenching my jaw and told me I would 100% be better after a very expensive botox procedure to the jaw joints. Needless to say the whole time with her was not a good experience. I was severely depressed and in level 7-8 pain at that point. I would have done anything to be better.

Is there a migraine specialty within the headache specialty? I read about people getting IV treatment and trying new medications and these protocols are not being offered to me.

I am currently on an elimintion diet - the one in the Heal your Headaches book by David Bucholz. The only thing I have not eliminated is caffeine. So far the diet has not helped much. I normally don't wake up with a headache but it comes on very shortly after I awake. This plus the rapid onset have made me wonder if I have NDPH and not chronic migraine. I don't want this diagnosis but I want the right one of course. I have neck and shoulder pain as well and jaw and teeth pain at times and even pain in my nose and face at other times. This feels more like migraine.

I do need to start keeping a diary. I have attemtped it and then get frustrated and give up but I know it is helpful for doctors to have and if I see a new one I should start one up.

I am seeing a therapist which is helpful but I'm not sure she is the right one as it is more body centered therapy and I'm not getting a chance to talk about my experience with this chronic, every day daily headache.

Thanks again for your response. I am researching new doctors. There is Dr. Kudrow here in LA who I haven't seen, then Dr. Cowan who I think used to be in Ojai but I think is at Stanford now, and the the Anodyne clinic in Dallas. I've kind of zeroed in on these as my next step. The program at Anodyne with the IV outpaitent treatment sounds very interesting to me and maybe could be something that could break this cycle that nothing else seems to be able to.

Any other suggestions from anyone are appreciated! I'll go to the forums too.

Thanks again,

Justine

Nancy Harris Bonk

8/17/12 5:04pm

Hi Justine,

If a doctor told me I'd be "100% be better after a very expensive botox procedure to the jaw joints" I would head for the door as soon as possible. No one can say that about any disease.

One thing to keep in mind is that there are only 290 Migraine specialists in the U.S. who are certified in headache medicine. Other doctors may say they are 'headache experts' but may not be true experts. That's where our directory comes in. Dr. Cowan is wonderful and yes, at Standford, and Dr. Krusz at the Anodyne clinic is also fabulous. I don't know Dr. Kudrow, but he wouldn't be on our list if he didn't "fit the bill." I think any of these doctors would be great for you to see. Call when you can as you may have to wait for an appointment. If that is the case, ask to be put on a cancel list.

Do you remember the exact date your head pain started? That is one of the hallmark traits of New daily persistent headache or NDPH, which is no fun at all.

Sounds like you are on the right path. Keep me posted, oK

Nancy

justinewest

8/18/12 10:40pm

Hi Nancy,

Yes, I can look back now and see that I should have run out the door but it was so early in my journey and really I was in a major depressive episode with post partum PTSD too from an incident with a neighbor so I should have probably been hospitalized at that point. That doctor's office was terrible. I tried to cancel the appointment a the day before and they told me I could never come there again if I cancelled. Then this statement and pushing me to get the botox and then the receptionst made comments about my weight that were rude. I feel I was taken advantage of in my state of mind and it makes me angry if I go there so I try just to let it be. Maybe I'll write a letter or post a review somewhere one day.

Thanks for your feedback on the doctors and who and who isn't a true expert. It re-confirms my gut feeling that even though I like my doctor I don't think he is right for me. Plus he actually said to me that I am an unusual case in that I'm not getting better or I do for a week and then I'm back in the throes of migraine again. I felt confused given that the only thing I had tried at that point was topomax and then lifestyle changes like exercise. Anyway I am going to call both those offices on Monday and see when I can get in. Stanford is closer for me and right near my in-laws so that might be the better step unless I can get in to see Dr. Krusz sooner. Plus I kind of like the idea of being away from my in-laws who seem to be a migraine trigger themselves.

And no, my headaches definitely started episodically. But it was when I tried Zoloft that they switched to 24/7.

Thanks again for all of your help. I guess the forum is the better place to start communicating with others, right?

I'll keep you posted.

Justine

Horse-and-Carriage

8/18/12 10:07pm

Have you experimented to see if light is causing your headaches/migraines? I have migraines caused by my photophobia (sensitivity to light) and, before treatment, I wouldn't have them upon waking, only within minutes of opening my eyes (i.e. I could lay there for a half-hour before opening my eyes and be fine). Your similar statement is why I bring up light as a trigger. Fluorescents (including compact fluorescents, or CFLs) are the biggest trigger of all the types of lights. We have a yellow filter in our eyes that helps keep the harmful blue wavelengths of light from entering. The filter is made of lutein and zeaxanthin, which is found in foods such as spinach, kale, orange juice, grapes, and certain other fruits and vegetables. Supplements of them are also produced (usually touted as being for macular degeneration, as lutein and zeaxanthin also work with that part of the eye and can slow progression of dry MD). My treatment is wearing tinted glasses called TheraSpecs and taking the migraine preventive nortriptyline (not every med works for everyone, so don't get down that it didn't work for you). I tried a supplement of L and Z, but unfortunately it interfered with my preventive, so I had to stop taking it. Because of another health issue, I can't eat most of the things that have L and Z in them, but I can eat/drink a couple, although they're not as high in amounts as things like spinach and kale and other greens. So, I will try making them part of my regular diet, though I don't know if that will help. Hopefully, light is not your trigger, though! Have they looked at your hormone levels? Did you start or stop any supplements, vitamins, foods, etc. around when your issues began? Does anyone else in your biological family (if you know them) have migraines?

justinewest

8/18/12 10:51pm

Hi - thank you so much for this comment. You know, I've never thought that light could be my main trigger and I've never experimented with it but this makes so much sense to me. I have always needed my sunglasses all the time even in overcast weather, this for years before I really got bad headaches. We moved into a new house right before I had my second baby and we had florescent lights in the kitchen and track lighting throughout the house. All of it bothered me tremendously. We've sinced moved because of terrible neighbors and a horrible incident and I do feel better in our new house that has zero of that kind of lighting and I thought it was just from being away from those neighbors. Hmm. Also using the computer and watching tv can trigger headaches but I always thought it was my position or posture.

Another thing is that I recently bought polarized sunglasses (thanks to Teri's book) and they have helped a lot. I always wear a hat outside but that is one thing I have never eliminated - I am in the light or sun every single day. This is really an interesting concept to me and I am excited to look into it further and experiment.

And my headaches peak in the afternoon and then seem to calm down in the evenings.

My hormones have been checked and everything is all normal. Same with all my bloodwork, iron, etc. As far as biological family, my aunt has migraines and started getting them in her late thirties (which I guess I'm in now at 37) which is another reason my doctor diagnosed chronic migraine. She is now in her late sixties and rarely gets them. She never had them daily though and immitrex worked for her which it does not for me. However Zomig seems to help but I rarely take it because then I'm afraid it won't work if I really need it (an event like a wedding or something).

I didn't change anything except of quitting breastfeeding cold turkey and I had a lot of milk. That's a whole other issue but long past. Right at that time my sister went into the hospital and the ongoing neighbor incident started which caused me a lot of stress. So much so that I really didn't even pay attention to the headaches for six weeks or so. And then from there I went from bad doctor to worse and all the medications (none for migraine) I was given plus the stress I was under caused the headaches to become daily.

Anyway, thank you so much for sharing. I'm going to look into those glasses now.

Justine

Melanie Jane

8/19/12 1:53am

Hi Justine,

Just throwing in my two cents. Dr. Cowan was my doctor for a number of years while he was in Ojai, and I have nothing but good things to say about him. He is at Stanford now, which could mean a longer wait to get in to see him, but I don't really know. I've also heard very good things about Dr. Kudrow, but have never been his patient myself.

Since your constant head pain started after you stopped breast feeding, I'd wonder if there could be a hormonal component involved. I started having more severe and frequent migraines after I stopped breast feeding, too, and when I entered peri-menopause, developed a constant daily headache from low estrogen. The migraine specialist I see now is Dr. Susan Hutchinson in Irvine, CA. She specializes in women's mood, hormone and headache issues. She's also one of the "physician experts" who contributes on migraine.com. You can read more about her practice there.

Sounds like you've researched a lot of good people. I hope some of this information is helpful!

Melanie Jane

8/19/12 2:11am

Oh - and just thought I'd add my hormones checked out "normal" too - but that means little if you are a migraineur who is triggered by hormone changes.

justinewest

8/20/12 2:42pm

Thanks MJ! You know I forgot about Dr. Hutchinson. I went to see her for a consultation back in January and she was actually the first person to say that she thought I had a migraine TTTH combo. I read her entire webiste and remember she did specialize in chronic daily headache and hormones and mood disorders too. I really liked her but I felt like I should try the doctor at Cedars first since he was closer to my house and he was highly recommended by the therapist and psychiatirst I was seeing at the time. Now I know migraine is not his focus and he is definitely not a sufferer. Not that this is necessary but I do feel like he gets frustrated with my lack of improvement and probably would have more empahty if he had experienced the pain.

Can I ask how Dr. Hutchinson treats your hormones and migraines? She thought the birth control pill might be something I should try.

Anyway she might be a good person to go back to since Orange County, especially Irivine is so close. I grew up in orange county so my family is there too and i can always drop the kids off with my mom.

Thank you for bringing her back into my memory which has become terrible with migraine.

Take care,

Justine

Melanie Jane

8/20/12 10:12pm

Dr. Hutchinson also sees my daughter and has put her on BCP as a preventive for her menstrual migraines. It has definitely helped her a great deal. She used to be completely disabled by her migraines and other menstrual symptoms for 3-4 days every cycle. Now her migraines are far less frequent and severe, and she no longer misses school or social events because of them. She generally takes some ibuprofen if she needs to and "carries on." I rarely even know if she has a headache or migraine these days unless she says something.

In my case, since I'm peri-menopausal, I use supplemental hormones in the form of an estrogen patch and both oral and cream forms of progesterone, and an SNRI to stabilize mood. I started on a hormone regime under Dr. Cowan and my gynecologist, but Dr. Hutchinson has since helped me navigate changes in the levels, types and timing of what I take as my body's own hormone levels have shifted with time. I still get about three mild migraines a month, which I can usually abort with triptans, but it is way better than where I was when I first saw Dr. Cowan about five years ago. Back then I had a constant, daily headache interspersed with 12-16 days of severe migraine per menstrual cycle.

Personally, I think Dr. Hutchinson is really sharp and knows her stuff. My only frustration is that she only gives you 15 minutes for a standard appointment. I have to make sure I've got my list of questions ready and don't waste a second and take notes on the major points she makes so I won't forget anything!

klgm326

8/22/12 2:39pm

Hi Justine, Just to say, I hope you find a headache specialist that you really like. I'm on the other side of the country, so not much help there. But I have learned quite a bit from the two specialists I've had. My headaches started at around the same age as yours--37-38. I had them earlier, but they became more chronic. As most of us have done, I spent thousands on various therapies that worked and that didn't. My current specialist told me that she has had the most success for her patients with hormonal headaches (and it sounds like yours could be) from beta blockers. We added that to me cocktail. I was already on zonagran (an antiseizure like Topamax) and amitriptyline (a tricyclic antidepressant often used for chronic daily headaches). Interestingly, each doctor has tried to wean me off the amitriptyline and each time, the daily headaches return. This is why keeping the diary is so important. This last time, I was able to look back three years and communicate to my doctor what I'd discovered. She agreed to re-up my dose and for the first time in years, I've gone almost a full month headache free! I write all this to tell you, help is coming for you. In my case, I need one med from each category! Who knew!!! And this info could help you talk to your doctor. We're all different, but it's not always one med-it's a combo that finally hits the jackpot! I'm hopeful your pain subsides quickly! My docs also give me a prednisone taper to break a cycle! Works great for me! (when nothing else does)... Best of luck!! Kim

PCPerson

8/22/12 3:51pm

I took the National Migraine Foundation's, now National Headache Foundation's great paper newsletter since probably the 80's. Now they have it online and it's a little harder to use. But in it they have experts talking from the various headache clinics around the country, and Chicago had the most famous one where Dr. Diamond is located. I saw Dr. David Pursley in Lexington, KY and liked him--a neurologist. I knew someone that was going to Mayo Clinic but not sure her outcome.

National Headache Foundation does have a list of clinics they can tell you about. I've tried preventatives: beta blockers which haven't helped. Topomax gave me small daily headaches and messes up some people's memory.

Sumatriptan helps mine go away fast these days.

Good luck.

mom-of2&grad-student

8/30/12 5:44pm

Hi Justine,

I'm sorry you're having to navigate this and I hope you get some relief soon. Please consider finding a neurologist who is a headache specialist. The book you're reading is good and diarying is invaluable to ID your triggers. I have to watch my diet seriously and diary b/c I have tons of dietary triggers. I used to get @4 migraines a week (some lasting 3 days) but they are more controled now with Zonisimide (a whole 400 milligrams-they've worked me up to; which is like Topamax but has less memory-loss side effects), Nortripiline, Wellbutrin, and magnesium taurate. The Zonisimide significantly reduced the severity of my migraines as well as the Nortriptiline...so when I'd get them they were not as severe. My headache specialist wanted to put me on hormones too but I'm close to menapause so I chose not to do that in hopes that when menapause does take place that naturally I'll get a reduction of migraines. I have also had two rounds of botox injections and have had very good results from those. There was a time when I thought I'd have no relief. You will get there and some combination will be found that will help you provided you get to the right doctor that understands how to treat this. Hang in there...and hope you feel better. -Margaret

justinewest

9/ 1/12 3:00pm

Thank you all again for your help and your answers. I had my first round of botox (minus the procedure in the jaw that was not helpful and a big waste) four weeks ago and I think it has helped lower the intensity of my headaches. I haven't had any migraines that have kept me home or away from my normal activities. It's the daily minor headache with jaw and teeth pain that comes and goes that is so bothersome recently and so hard to get under control. I had a good appointment with my doctor yesterday. In two weeks if I don't have more relief we are going to try a new preventative medication. And I have an appointment with a neurolgist headache specilaist in five months if things don't improve with my current doctor. I am still considering Dr. Hutchinson in Orange County as well and I'm still on the fence about whether I should buy the theraspecs - I guess they can't hurt right?

I really appreciate all the help and support.

Justine

Q: Hi, I'm new on the boards and I need help! Here and in life.

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