New Daily Persistent Headache Support Group

I've just been recently diagnosed with NDPH and have been living with the headaches for 3 months. I'm on a low dose of topomax and hope to be bumped up on dosage next week. I'm wondering if anyone has had any connections between sudden allergies to foods they were unaware of ( like wheat) or clenching problems causing the headaches, or any other problems I should ask about to be tested for. My headache specialist said that I have been clenching at night, which the ENT said could be contributing to my headaches. I'm on muscle relaxers for that during the night, but as of right now, the headaches are a bit less severe than when they started months ago ( thanks to the topomax) but they are still occurring nearly everyday.

I think the hardest part of this is watching the people around me that I love so dearly not understand what I'm going through and sometimes it seems like they just expect me to shake it off and like I should be able to be the old me again, the day before I woke up with the headaches.

My doctor put me on hydrocodone(vicodin) for the pain, which I was taking all the time, and now I'm only having to take every few days if that, but could this be adding to my headaches?

I'm so glad I found this forum, and right now I'm just looking for answers, and for support as I'm sure all of you are, and anything I can do to manage the pain and get my life back on track. Any advice for a girl who is just now starting to deal with these things? Anyone out in the Northwest that know of any specialist or doctors to see?

my best and warmest wishes to you all!

MissLundin,

Welcome to the forum. We have another from the PacNW! Topamax can take a while to begin working so I hope as you gradually increase your doseage, you begin to feel even better.

As the spouse of someone with NDPH, it takes a while to really understand the gravity of what you guys are going through. Your friends and family are used to people getting headaches, but not used to people gettting A headache. Give them some time to understand and you will see who your true friends are.

It sounds like you do have some days without the headache? If so, that's awesome and I'm suprised you got the diagnosis, not that it really matters. Hopefully they are on the right track treatment- wise for you to be getting some breaks in the pain.

Early on my husband's headache he was also put on vicodin (and other narcotics) and with those he ended up with rebound headaches. He also experienced that with muscle relaxers, the nights he took them he would wake up the following morning with an even worse headache.

The only Dr. I can recommend in the NW was the 2nd neurologist my hubby saw, he's in Kirkland, WA (eastside of Seattle) and that's Dr. Singer. Since you already have the diagnosis and it seems your Dr's are on a good treatment route already for you, I'm not sure what more you can do.

One thing I encourage is that since you are "fresh" into your headache.... ask for every possible test you can come up with in case something was missed. After your headache gets too old, they move to treating rather than trying to find the cause and that got upsetting and frustrating.

I wish you luck and once again, welcome.

Although it seems that there have been days where the severity of the headaches have been less than others, especially since I've started the topomax a couple of months ago, I cant really recall a day where I've been headache free completely- although the last three months or so have all begun to blur into each other a bit. I'm calling some other specialists to look at some other possible causes.

I'm also a long time sufferer of battling depression since I was about 14 ( I'm 26 now) I was put on a few different meds that never totally worked for me until I found wellbutrin and within a few months I felt like myself again and was able to use it short term along with counseling.

Over these past few months I've found that I've been trying desperately to be okay with this situation even though I'm really not. I thought that I was stronger than the pain of these headaches, but before I get to a really dark place I know the signs and patterns of when I need to seek some help. So I started back at counseling and I am talking to my doctors today about going back on the meds for a while. I'm hoping that there will be no drug interaction between the two and I'm hoping that by increasing my dosage of topomax shortly the pain will lessen over time also.

Thank you so much for the support and the warm welcome, in this early stage of having this I'm finding it really difficult to understand and I dont really know what to tell the people in my life, but I hope as they run more tests and I do more research and talk to more people out there with the same thing, I will understand this more and thus find ways to manage it better.

warmest wishes,

Miss Lundin

Hi Miss Lundin,

I'm also in the PNW (Seattle area; I see Dr. Singer as a consultant). That's great you are on Topamax and see some effect. As drmeows said above, it can take a couple months at a full dose to see help. You're off to a great start. Just do the dose increases very slow. This will help minimize side effects, in addition to drinking water.

Pain killers, muscle relaxers and similar (even caffeine) can all cause rebound headaches for some. If you think there is ANY chance you have a rebound headache after reading up on it (try a Google search; reputable sites like Web MD and About.com have some good articles on it), then you should go off the Vicodin for at least a few weeks to see what happens.

Typically, if you stick to less than 2-3 days a week of the same pain killer, you can avoid rebound. If it's already started, it doesn't matter if you've dropped down to less frequent dosing, it's still there. Just a thought. You definitely want to avoid those as well because you wouldn't see the full benefit of the Topamax.

I'd save the Vicodin for only the absolute worst days. If you don't absolutely need it to stay out of bed, don't take it. You build up a tolerance very very quickly, especially at your young age. Most doctors won't give you anything stronger than that, so you can get quite stuck. I'm 23 by the way so I can relate to how much this affects your life just a bit...

For you to already have a diagnosis of NDPH and on a preventative that even might help you is HUGE. It took me over three years to get to that point! This was after thousands and dollars, over a dozen doctors, and dozens of meds.

If it would put your mind at ease, you could get tested for Celiac's disease. They have shown that for the common public, going gluten free doesn't help. I have never heard of NDPH being causes by any food allergies. Some people do have a migraine component to theirs, and some migraine patients have food "triggers". Look those up if that sounds like a possibility, especially if you get sensitivity to sound or light, or nausea.

If you have been clenching (and this is confirmed by a dentist), think about getting an NTI device fit by your dentist. Muscle relaxers aren't the best long-term unless you see a huge difference (it is that way for me, and I have continued on them nightly). I'd personally try things like physical and/or massage therapy, a NTI device, or similar first. The less meds the better because after awhile you just get caught up in them, and before you know it you are on a dozen meds and the pharmacists all know you by name (me!). Some people also get dependent on them, and can't sleep without them or similar (or worse).

Please keep up with your treatment for depression. There is quite the link between headache conditions, chronic pain, and depression. This can sneak up on you and it's better to treat it early than wait. I'm glad you found something that has helped! Some of the antidepressants can also help with pain.

Are you still able to work?

At this stage of the game, I'd suggest you keep a daily diary of pain level, if you took any as needed medications, what daily medications and doctors you are seeing, etc. This is really great to look back upon. I wish I had done this because about all I've kept is a long list of meds taken (and had a bad reaction to) and procedures done. Not much else.

You need to be able to gauge your progress on Topamax and any other preventatives you may try. I personally like the 1-3 or 1-5 pain scale better than 1-10.

Best wishes. Hope to see you around here more posting. You're really on the right track so early in the game.

Hi and welcome. It is really good that you have found a med that is showing promise already! Topamax helps keep my pain level down, though it doesn't get rid of my headache completely.

I have not taken wellbutrin at the same time as topamax, but I did take Cymbalta for a while with it and now take Seroquel with it for my headache without any interaction problems. Antidepressants are often used to treat the headache so hopefully you won't have any problems taking them along with your other meds. It is very good that you are catching the depression early and getting it treated. That may end up helping you keep your headache from getting worse too (pain and depression tend to get into a downward cycle).

It is really hard to understand NDPH. I have kind of learned things to tell people, and come to terms with how things are day to day, and how to minimize my pain level, but I still don't understand the WHY part. It is quite mysterious.

Hi Miss Lundin, welcome to the group! I'm not sure how much time my little ones will give me, so please forgive me if this ends quickly.

I have also struggled with depression prior to developing NDPH, and wanted to pass along a couple things. I found that Topamax increased my depression - so noticeably the first time I tried it that I quit after a week. I mentioned this to a neurologist that I had a consult with, and he suggested that I quit Zoloft (which I had been on for post-partum depression and had been tapering myself down already because I felt mentally quite good - I had had what would be diagnosed as NDPH for 3 months at that point) because even though I was on a small dose (25mg), it could be exacerbating Topamax side effects (I also felt impulsive and very nonchalant about my impulsivity - this was at 25mg of Topamax). I finished tapering Zoloft and tried Topamax again, and didn't notice the side effects I noticed before. I was surprised by how little I seemed to be affected this time around.

I was having so much pain (the majority of my days were 7-8:10) that my PCP and Headache Specialist decided to increase my Topamax dose by 25mg each week until I reached 200mg. Topamax has been shown to have added benefits for up to about seven months after a dose increase (in headache frequency anyway - for example, the number of headaches a patient has will continue to decline during that period and not just immediately following a dose adjustment. That is what studies have shown (Dr. Singer showed me a chart, so I'm trying to remember specifics off the top of my head - mostly I'm trying to convey the principle), I'm not sure if it translates into a continued pain decrease over time in patients like us that don't have a reduction in headaches. At the time my doctors thought they could get my headaches to go away, so increasing the dose quickly gave me immediate benefit and theoretical increased-over-time benefit. I'm explaining all of this to let you know that I increased my Topamax dose quickly and didn't notice another feeling of increased depression like I had on the Zoloft, but it snuck up on me.

After I had been on Topamax for about two months, soon after I hit 200mg, I developed a dark depression and even had fleeting suicidal thoughts, like I would see a butcher knife and have a mental flash of cutting my wrist, and then think WHOA! - where did that come from? "New or worsening depression or suicidal thoughts" are warnings listed in Topamax side effects - as in "call your doctor if you have..." - and I called my PCP - but I wasn't convinced that mine were caused by the Topamax because I had had deep depressions before, particularly during winter (I'm in the Seattle area). I had started to see a reduction in my daily pain, (but never a reduction in my headache), and also had weight loss, which I liked, so I didn't want to throw the Topamax out since I wasn't sure it was causing my depression. My PCP put me on Wellbutrin (which I had used before and I found made me hyper, and Topamax was making me drag, so it seemed like a good choice).

Initially, my PCP put me on 100mg SR once a day, and I did that for a couple weeks, then moved up to twice a day. Throughout this month, my Topamax seemed to be giving me my best relief yet, and I had about a month of 5:10 days. My depression wasn't responding as well as she liked, so she increased my dose to 150mg 2x day. On the way home from that appointment, I got what I thought was a migraine (I hadn't been diagnosed with NDPH yet, and now believe it was a pain spike) that sent my pain back to the 7-8-9:10 range again and it stayed there for a week, then dropped down to 5:10 for a day or two, then bounced back up, and it has been doing that since (This was the beginning of February). I'm not sure if the addition of Wellbutrin contributed to my pain spike or not. As I mentioned above, it started after my doctor increased my dose, but before I actually took it. The month that I had the best pain level was the first month I was on Wellbutrin, my pain levels were decreasing before then, but hadn't been for very long before we had to address the depression. I asked both my PCP and Neurologist (Headache Specialist) whether there was some cumulative chemical reaction going on in my body that would account for the delayed increase in pain after I started Wellbutrin. Neither knew of any chemical reactions between Wellbutrin and Topamax that would explain my increase in pain (or actually, just reverting *almost* back to where I was before - making the decreased-pain month the anomaly), but because my Headache Specialist felt that a less excited NDPH brain is generally better off (he diagnosed me at this point), he bumped me back down to 100mg 2x day. I was not in a dark depression or having the disturbing thoughts anymore, so I felt fine with that.

Fast forward to now, SPRING! in Seattle, when I am not normally depressed, and I AM. All the side-effects that I was carefully watching for when I started Topamax are suddenly here in full-force - with no change in my dose. I feel impulsive and detached, depressed in a weighed-down trying to live life through a thick fog - almost a spectator - sort of way, flat AND angry, irritable, very, very STUPID. I just started seeing a new Headache Specialist, and he very tactfully asked me whether I'm noticing any cognitive effects, and after I said yes he pointed out everything he noticed and told me he wanted to get me off of it right away. So right now, I'm almost finished with a quick Topamax and Wellbutrin taper, and he wants me to try Effexor for depression/headache preventive when I'm done tapering because he finds it more helpful for headaches than Wellbutrin.

I know I've written a lot about myself Miss Lundin, but I wanted to share my experience with you so you can file it away and add it to any information you use to base your decisions about your care on if you find it helpful.

Writing it all out just now, it sounds really aggressive and like a bad idea for me to jump up on Topamax so quickly. But I'm pretty sure if I had the decision to make over I would do it the same way if I had all the information I had at the time. I have commitments and responsibilities (I'm a stay at home mom) that don't go away or slow down (or scream and fight with each other less) when my pain is bad, so I think my decisions will be more aggressive because of that. It's probably not the best decision for most people though.

Miss Lundin, I just want you to know that I know all about wanting to be stronger and able to "handle" the pain, please keep in mind that there may be a chemical factor making "handling" it more difficult, and making your depression worse.

Post edited by: Trillium, at: 05/12/2009 11:19 AM

Thank you drmeows, tortoisegirl ,MaryR and Trillium for the warmest welcome, support and information! As far as the narcotics go, I've decided to go off of those for as long as I can handle it- before the pain was too much to function and I was basically feeling like a pill doll every day for almost a month and a half. So we will see in a week or so what happens I suppose, right? I'd rather deal with the pain as it is now than create a cycle like I've read about.

After reading so much about rebound headaches I dont want to create a cycle- the pain has lessened some days definitely over the past month since I've been on 100mg of Tomopax everyday, but I go see Dr. Peterson the headache specialist next week and she mentioned bumping up my dosage again.

There have been other symptoms I've had along with the headaches that seemed to start around the same time- it could be coincidental, but I'm going to talk to the Dr about it more because as drmeows said my headaches are still "fresh" so I want all the testing I can possible have. Things like tingling in the fingers that led to numbness and tingling in the wrists and now has led to throbbing and numbness in the forearms that is worsened when my arms are in certain positions. The first neurologist said it was carpal tunnel, but Dr.Peterson was not convinced that it was.

I have a concern about caffeine- i am a one cup in the morning person and that's usually about it- maybe one in the afternoon that is half decaf- i used to have a lot more caffeine in my life at a younger age, but i knew that wasn't good for me so i took the bulk of it out. Should I be taking it out of my life completely? I know if i stop drinking my one cup in the morning I will have a horrible headache ( I've tried that) but I'm just not sure if it is something that I need to eliminate or if anyone with headaches has any use for any amount of caffeine.

I wanted to thank you again for all the great information, advice and support.

I have all sorts of uses for caffeine! I am a two cup a day girl, actually half milk/half coffee, so more like one cup total caffeine. I have talked to every neurologist I have seen about it (3), and they all seem to be fine with a moderate, consistent amount per day (if I am remembering correctly, I have been advised against more than two cups per day). Drinking a ton is horrible for your health (as you noted), and drastically changing the amount you drink each day can cause many people to have caffeine withdrawal headaches. There have been many seasons in my life where I have been totally decaffeinated, now just happens to not be one of them. Interestingly, my brother was having daily headaches and his doctor had him eliminate all excess sources of caffeine (Excedrine was a big one for him) and stick to a very regimented amount daily - like medication, and I think it's been helping him. It is up to you of course, but there is not a no-caffeine policy for headache sufferers among the Headache Specialists I've seen.

The numbness and tingling in your wrists and forearms is something I would recommend discussing in detail with your doctor, and it's great that she sounds like she's not writing it off. Do you have any neck pain? I think having the same symptoms bilaterally narrows down the list of suspects. I have been having weakness and numbness in my hands, forearms, and now shoulders which is why I've been thinking of the list of suspects, and Google has been making me nervous about MS (although this started for me AFTER Topamax, so I need to finish tapering and let my body return to normal before I will know if it's just the medication - I assume this started for you before Topamax?) - that seems more related to weakness and headaches than numbness though (as far as Google is concerned ).

My new neurologist AND a pain specialist I just saw want me to have a neck MRI (both suggested it independently) to rule out a possible cause for my headache, speaking of checking things out while you're "fresh." I am ten months into my headache (eight months with my last Headache Specialist), and it took a couple of new pair of eyes to make a pretty common sense recommendation to rule out another primary cause of my headache besides NDPH. You are your own best advocate! That is another reason to keep on top of your depression, in addition to what Mary said about pain and depression being a downward cycle, you need to be able to make good - sometimes assertive decisions, which may be more necessary now as you are establishing your health care team to see you through this difficult illness, but also may pop up when you're not expecting it.

I have been on and off caffeine in the course of my headache and it really didn't change the underlying headache. In a pain spike I use caffeine as an abortive medication (with sugar if I can...it is more effective that way), it isn't all that great, but nothing else is either and it is very commonly available without a prescription.

If you suspect that it is contributing you can always wean yourself off the morning coffee and see if over time your headache does anything different. It was worth the experiment for me to prove that it doesn't, especially since I have a lot of migraine symptoms, so I was checking migraine triggers.

The tingling in your fingers and wrists is very interesting. I only had the hands falling asleep pins and needles from Topamax, but nothing at all in the wrists or forarms. If yours started before the Topamax that may be even more of a clue. Very interesting that you might have the same symptom Trillium.

Hi Trillium,

You should def. pursue the neck MRI because more knowledge is always better. However I want to share my experience with you. Please take away only what is helpful, if anything, for you. I began having daily headaches in Nov 2007, along with neck and shoulder pain, all on the right side. My neck always feels like something needs to pop and I have constant muscle spasm and tension. I went through a round of physical therapy for the neck/shoulder pain to see if it and the headache improved. It did not.

About eight months in my neurologist ordered a neck MRI (previous brain MRI's showed nothing out of the ordinary). The neck MRI showed four bulging discs. This was supposedly now the primary cause of my headaches. At that point I went through two more rounds of PT. (Finished last round in Feb 09.) I went for the PT, three different places, all of which practiced different approaches. I was very dedicated to the appointments and the home exercises. Unfortunately none of the PT improved my symptoms. I also tried much chiropractic during this timeframe too - again with no relief. I also tried botox in the neck/shoulder - no impact other than increasing my pain on the other side as well. (I later learned this can happen sometimes when they only shoot it in to one side.)

If your doctor finds something on the neck MRI I hope your experience is different and that you are able to relieve your headache pain by treating the neck. BUT . . . I wanted to share my story so the doctor's or PT's don't set you up to believe that it will definetely change your situation. That is what happened to me. For over a year I was told that the headaches had to be coming from my neck and that each round of therapy, massage, myofascial release, etc was going to fix my problem. When I tried so hard and it did not, it really impacted me negatively. I felt like somehow I wasn't trying hard enough or that if I just went back for one more appointment or found the "right" therapist all my pain would be resolved. I had such high expectations and wanted to get well so bad that each time it didn't happen the fall and toll on my emotions and spiritual well-being was worse and worse.

I have seen some new doctor's since who confirm that the neck MRI do show bulging discs but they feel that the bulges may have nothing to do with my head pain and that the chronic muscle spasm/tension is actually from the headaches - not the other way around. I may never know which opinion is right. I just keep trying new things and hope something will work along the way.

Please don't think I'm trying to be negative or discourage you in anyway. I realize the caution I'm expressing may be unecessary b/c most likely you are already much better than me at managing your expectations regarding new possible causes and treatments. I tend to get my hopes way too high and become too disapointed with the outcome if it's not positive.

Wendy