Migraine

Hi all, I have been hanging around since last summer, reading articles and finding answers to my questions through others' posts, putting off getting my own account because I didn't want to be around for long. But now I have a question of my own and as heartbroken as I am about it, I'm not going anywhere.

I don't know how many of us there are around here, but I thought it was worth asking just in case someone else has struggled with this issue. I have recently been diagnosed with having NDPH (by my headache specialist) since 7/13/08, but also have migraine. Before last July my migraines were very sporadic and ALWAYS preceded by an aura - and for all I know they still are, I've had two auras since last July and an NDPH diagnosis, so maybe I've only had two migraines in all that time. If my (theoretical) migraines always came with an aura, or marched along with little labeled flags that said "take abortive medication now to avoid additional pain for today, tomorrow, and perhaps the rest of the week," that would be great. My diagnosis is so new to me that I am still wading through what my increases in pain mean to me. For those who have both NDPH and migraine, is it difficult for you to tell the difference between a migraine and increased pain, or are they distinctly different for you?

First off, hello and welcome out of lurking mode!

My guess is you've already been to our Start Here Folder. If not, please take a few minutes and check out our forum policies and guidelines.

I've not dealt with NDPH before. But I have dealt in the past with various combos of migraine and tension headaches, thanks to muscle spasms related to trying to talk around a deadened vocal cord.

What my interal med doc did for me was to prescribe two different types of meds, one specific to tension (Lodine XL) and one specific to migraine (I tried Imitrex samples, but primariy stuck to Ercaf). I also had muscle relaxants prescribed around that time. She told me I might have to do some trial and error, based on whether it felt more like migraine or more like tension. If I thought it was migraine, or had both in combo, I tried the Ercaf. If I thought it was more tension from the spasms, I tried the Lodine. If one didn't work, it was likely the other issue at play. I also supplemented my meds with comfort measures. Heat, primarily.

Lodine turned out to be a very pricy Tic-Tac for me, and didn't help one iota with the tension stuff, but the muscle relaxant worked very well. It didn't take long before I picked up on little things that told me which critter I was primarily dealing with and I knew which med to throw at it.

Hello, Shulo, welcome to the forum. We're glad you found us.

Migraines are typically worsened by movement and activity, so some people are able to identify them by putting their head between their knees. If that movement worsens the pain, it's a migraine. That actually doesn't work for me, but getting up and walking a few steps does work. If it's a migraine, each footfall hurts.

You might also pick up some pointers from these articles:

Is It Migraine? Tension-Type Headache? What?

New Daily Persistent Headache - The Basics

I'd like to leave you with one more link:

• Learning About Migraines and Headaches - Where To Start

And a very warm welcome. We are glad you joined us.

Hi Shulo, welcome to the forum! I'm so glad you decided to post, it's great to hear from you

Something else that may help you is a Migraine and Headache Diary if you're not already keeping one. It's a great tool to help track triggers, the effectiveness of medications, and any patterns to your Migraines and headaches.

Another thing to be aware of is what actually triggers your Migraines and then try to avoid those triggers whenever possible. Some triggers can't be avoided but being aware of them still helps. My triggers are lack of sleep (that's my biggest), changes in the weather (that's my second biggest), not eating, and some strong smells. Here's some more information on triggers that you can take a look at:

Common Migraine Triggers

Stackable Triggers

Welcome again! I look forward to seeing more of you on the forum!

Hi all, and thanks for the welcomes and links. I want to address your suggestions individually a little later, but I had an experience this morning that helped me figure out one way for me to sift migraines from NDPH pain.

My mom was over helping out today and I had a blessed opportunity to nap, but I found that soon after I lay down I became anxious. I had almost given up on my nap opportunity due to my uncharacteristic anxiety out of the blue, but eventually fell asleep and awoke at one point with numbness on the left half of my face - a symptom that has occasionally accompanied Migraine for me in the past. When I fully awoke I pieced together that anxiety can be a prodrome symptom for me.

Weird, I just now learned something new, thanks to MMC - my numbness was a type of aura "tingling or numbness of the face or extremities on the side where the headache develops," from Anatomy of a Migraine - and then came the pain.

Wow, I feel so ambivalent, on one hand so excited to have identified a MIGRAINE with absolute conviction in the midst of my other ever-present pain! On the other, I'm absolutely helpless to abort it this time, so I'm clapping while my head throbs - air claps!

I just wanted to add my welcome to the others! Dealing with NDPH along with Migraine must be so hard. I'm glad you've found one way that can differentiate between the two for you. Even if it doesn't fix the pain, I find that somehow just knowing what is going on can sometimes be a relief.

Thanks for the welcome Hanako!

Yikes! I just realized that it may seem by my last post that I thought it weird that I learned something here - oops. I REALLY meant that it was weird that I thought I had read every last article that was applicable to me on this site, and it was weird to see something with new eyes, even if I had read it before. I really appreciate all that I have learned here.

Dragondrool, thanks for the trial-by-med tip. Part of how my headache specialist and I arrived at my NDPH diagnosis was after months of thinking I was having daily migraines that weren't responsive to abortives when I (carefully, as to rule out MOH) used them.

When I got my NDPH diagnosis I threw the Migraine baby out with the bathwater and decided all my pain was due to NDPH for a month before coming to my senses and remembering that even if I can manage the pain of a Migraine, it's not good for my brain and I should try to abort them if I can.

Nutcracker, thanks for your suggestions on hanging my head upside down and footfalls - both hurt me when I'm in increased pain. In fact, since this all started in July I have begun looking for my kids' sippy cups under the couches by laying on the ground, because it hurts to hang my head upside down just about all the time.

The biggest problem I have in differentiating types of pain is that my NDPH pain level is not well controlled right now. An average day I wake up with a pain level of a 5 or 6 and it stays with me all day, and a flare-up for me means a 7 or 8 for 4 days to a week. If some of the "flare-ups" are Migraine that I have a chance of aborting, it would be really helpful. It is sort of like trying to figure out how to tell if you're getting a migraine if you already have one. Sort of - only the pain part, not the wanting to throw up, and not wanting to move, and all the other really horrible things that people suffer with Migraine - I don't want to offend anyone.

Thanks for the suggestion on triggers Laura, when this all started last July I worked really hard to eliminate all the triggers I knew about and nothing changed, which I guess makes sense now if it was NDPH starting in July and not Migraine. As for the migraine I had yesterday, I was napping because I had not slept well the night before, so that might be a trigger for me to keep an eye on.

Thanks again all.

It has been bothering me since I posted it that I wrote that my pain is not controlled well. I started taking Topamax in September, and while it has not decreased the number of days I am in pain, it has helped to decrease my daily baseline from a 7 or 8, which feels huge to me.

There was a time when I could not get through the day without my mom coming over to help with my kids, so my pain is managed much better than that now. I have just read about people with NDPH who go months without taking a rescue med (forget about the possibility of being cured for a second), and that's what I was thinking of when I wrote "not well controlled."

With the amount of backtracking and restarting I've done on this one thread, can you imagine having an actual conversation with me? Topamax and pain have made me more dumb than I prefer, and more dumb than my pride can let slide by without taking notice - which is character building and a good thing

Hi Shulo!

Welcome to the forum.

I have NDPH with Migraine (but I have Migraine without Aura). I'm so sorry to hear you are in the same boat, but really glad you have found us and joined in the conversation. I have had NDPH since October 2005. I've also had Migraines since then.

I completely understand what you are saying in that it is difficult to differentiate NDPH pain from a Migraine. It was difficult for me for a long time. They are very similar some ways. And when you have daily pain, sometimes it is hard to figure out, is this headache like the one I've been having daily or is it a Migraine? For me the both put strong limitations on my activity level. As the frequency of my Migraines increased, I discovered some of how they are different. Although sometimes it still is hard to tell.

Like Laura mentioned, keeping an extremely detailed daily Migraine/Headache diary really helped me to learn when I was Migraining and should be taking the abortive medication as opposed to when I could just take a muscle relaxer and find relief or use other "tools" to get through my pain. For a list of my "tools" and lots of other people's, see the thread What's in your toolbox? I don't know what I'd do without my ice packs!

In my experience, through looking over my diary, I've found that my Migraines are accompanied by nausea, dizziness and extreme fatigue Although I do experience fatigue with my NDPH, it is more a needing to rest between activities (i.e. unload dishwasher/rest/take a walk/rest/bathe the dog/rest). I believe the resting gives my head a chance to "calm down" so to speak. Migraine fatigue keeps me to my bed or very minimal activity. I experience daily sensitivity to sound, light and smell. However with my Migraines, these are intensified and I also become sensitive to touch.

I would say, just as finding the right preventative medication is a trial and error/discover process, figuring out which pain is which is also a trial and error/discover process. Sometimes, I think I might be getting a Migraine, but I get up out of bed, do some activity and find out that I'm not immediately fatigued, nauseous or dizzy (which are Migraine symptoms for me) so I treat it like NDPH.

I'm so happy to hear that the Topamax has decreased your daily pain some. Going from a 7-8 to a 5 is a huge difference in daily pain! It is also good to hear that you have your mom for support! We all need a good support system.

If you have any other questions, I'd be happy to answer them. Although I am not happy to hear you are suffering, it is always nice to know that someone else "understands" our situation. Again, I'm so happy you are here.

Kelly

Hi Kelly!
Your name came up when I initially searched for NDPH info on this site, so I am so happy to "meet" you! So much of what you say is resonating with me, which makes me feel a little more sane, so before I go any further I want to thank you for that.

Now I've got a ton of questions I'm really curious about dizziness as a migraine symptom. Is yours accompanied by increased pain? I looked through articles here but didn't find the right ones if you can have a migraine that is primarily characterized by intense dizziness.

I have had some experiences lately that I thought were side effects from a new medication, but I have quit the medication and it should be well out of my system (7 days). I had such intense dizziness that I thought I was going to faint and ended up on the floor because being as low as possible seemed best - and safest. I have several calls in to my headache specialist (the prescriber), I'm just curious whether this is the type of Migraine dizziness you're describing? I thought it couldn't hurt to ask whether our dizzy experiences are similar.

I'm also curious about your muscle relaxers. Do they help your head pain, or just help your neck and shoulders relax - which sounds lovely and I'm sure would help some too. I'm just wondering how direct a connection they have to head pain proper.

When you mentioned giving your head a chance to "calm down," it reminded me of something I say to my husband a lot, usually around our kids' bedtime. We have three boys 2, 3 1/2, and 6, and they all have a ton of energy and opinions. There is absolutely not a mild mannered one in the bunch, so bedtime (our life?) can be loud and chaotic, and depending on how I'm doing that day, sometimes DH will take them all and leave me in a quiet room. But usually we work together to get them bathed and jammied and read to, and at some point I will get "overstimulated" and say good night to the boys and go somewhere quiet to decompress.

I find that it gets really hard for me to communicate and focus when I'm overstimulated, either by pain, emotion, too much going on. I just realized all of this like three days ago! My husband and I knew about bedtime, but I didn't connect it to the rest of my life until now, and now I'm looking ahead to evaluating situations and actually planning to try to not be overstimulated if I can help it. It is really distressing for me, because I feel so much more overcome by this illness in those moments than in others. I vote no!

Thank you again for responding, it really is comforting that someone understands, although I am sad that you had to live through it in order to comfort me today.

Shumanay

Shumanay,

I'm so glad to "meet" you too!

As far as your question about dizziness being a Migraine symptom, in my quick search, I didn't find an article on this site about dizziness being a Migraine symptom. However, I just read a question in the January/February issue of the "National Headache Foundation Headlines" about dizziness. (I have a paper copy, or I'd link you to it.) Basically, what they said was that there could be many reasons for having dizziness and that dizziness can occur with/without headaches, with/without Migraines.

I have had dizziness as a result of medications I take for my Migraines. When taking high doses of Verapamil(a blood pressure medication) for Migraine/NDPH prevention, I often became dizzy and passed out frequently. We just changed the dose and my dizziness decreased/gone away. Also some of my abortive/rescue medications exacerbate the "dizzy" feeling. So it definitely could have been that your dizziness was medication related.

I just re-read Anatomy of a Migraine and it mentioned that dizziness could be part of the Aura phase so I thought I'd mention it b/c you said you have Migraine with Aura. As far as a Migraine being primarily characterized by dizziness, I don't know. For me, it is just part of the many symptoms I get.

Is my dizziness accompanied by increased pain? Hmmm...well, this is a tricky one to answer. Sometimes I get a Migraine without increased pain. I often *do not* get the prodrome phase of a Migraine and I also don't get Aura. So, either gradually or all of the sudden, I feel nauseous, dizzy, feel the need to be flat, fatigue, possible increased head pain ect. So, all this to say that, in general, dizziness could be a side effect of a medication or it could be related to the Migraine. At least, that has been my experience. You could also ask your specialist what s/he thinks.

Another thing I wanted to mention is that sometimes (not always), but sometimes the location of where my head pain is can be an indication to me that it is a Migraine. My NDPH often feels like a vice on my head...although often I have that type of pain when I have a Migraine too. Sometimes, my Migraine pain is only one-sided but my NDPH never has been, so when I get one-sided pain, that has been an indication for me that it is a Migraine. That might be something else to pay attention to, is the location of your pain different with your Migraines than your NDPH? Maybe. Maybe not.

The muscle relaxer definitely helps my head pain! It may not take it away, but it is great for when my NDPH gets higher than I can tolerate. I would consider asking your dr. about it. I take Parafon Forte, but I know there are many other choices and others on the forum take muscle relaxers for pain.

Oh, I think taking "breaks" are my savior when I am around people and I am more active. Wow, 3 kids and a DH! You must be a busy lady! I also have difficulty concentrating when overstimulated. Sometimes we can't "choose" not to be overstimulated. Life just tends to happen and not care if it is overstimulating or not. What has helped me is finding ways to deal with the overstimulating situations when they occur. If I'm with a group of people and it is too much, I might go to the bathroom to be alone for a bit and decompress, taking deep breaths. Sounds like you've found that at your kids' bedtime you need a break afterward.

I think when we get "overstimulated" is a great time to use those other tools. Being by myself in a quiet room is a big help. Also listening to calming piano music can help me calm down. I have a guided relaxation tape that really helps me to relax. Even just breathing deeply and slowly can help. Or even a gentle massage from DH helps me.

NDPH together with Migraine or separately can be very stressful, not to mention facing our lives with them! I don't know what I'd do without the support of other people, whether it be friends I rely on that live near me or the voices of comfort and encouragement that I get here on the forum.

Wow, I didn't realize I'd written so much. Sorry if was too much! I'm so glad you are here and hope we can continue to encourage each other and learn from each other.

,
Kelly

Hi Kelly,
I'm never scared away by a lot of information! Your replies have been helping me sift what might be true for my head based on what sounds familiar in your posts, but also on what doesn't, so when I see a long one I feel like a kid in a candy factory! What might I find?

I would have replied sooner, but I'm in the midst of a really bad pain flare-up and have been in survival mode. I did take your and Laura's advice and pick up my headache diary again, really trying to find patterns, thinking I found some, trying abortives, and having them not work. And right now I am in definite NDPH territory for me, where I feel like my head is on fire. I know it will pass and settle back into my normal pattern, but it's hard while I'm here.

I had a good appointment with my Headache Specialist Thursday. His assistant's voicemail was eating my messages about my dizzy spells, and by the time I left a message that "took" the Dr. had a cancellation, so I went in and discussed everything with him in person, which was fruitful.

It's REALLY nice to know I wasn't being ignored! This illness is hard enough to deal with without adding feeling like my doctor is unreachable if I have a problem. Also, she called me back the same day when I left a message about the dizziness for the final time, so in the future I will leave a second message sooner if I don't hear back and I have a pressing issue now that I know their system has a potential glitch. And it would be *great* if they fixed their system! I always worry about being a pest, so my messages were each about 5 days apart, which prolonged all of us realizing there was a problem.

I went back and looked at my calendar to check on when I stopped the medication, and I initially overestimated how long it had been. It was only 5 days between my last dose and my last bad episode. The pharmacist said it could take up to 4 days to clear my system, but that side effects could take either longer or a shorter amount of time to clear. I have had hints of dizziness since, but it is fading, so I'm becoming more confident that it was the medication. My specialist said that dizziness is not one of the side effects he sees often, but that it is definitely on the list and we haven't made any other changes to my repertoire, so he's confident enough that he doesn't want me trying it again.

He also wants me to have a Lumbar Puncture, to rule out any abnormal highs or lows in CSF pressure if I'm paraphrasing him correctly, and because he's noticed some patterns in his NDPH patients only detected by LP. I'm a little nervous about it, although I've had three epidurals with childbirth. Still, the circumstances were different and I was nervous about those too, I was just willing to endure what seemed like a little suffering and risk for a huge payoff (in my cases). This just seems like suffering and risk, and the payoff is more potential and abstract. Have you had an LP Kelly, or anyone else that's reading the thread? I'm sure I'll get instructions when I call to make my appointment, but I'm wondering if I can drive myself home. That was never an issue with epidural anesthesia!

It is really great to be able to talk about my fears about a procedure like an LP here, because I don't think it will be mysterious and scary to people here like it might be to friends not dealing with an ongoing illness like mine here at home. I'm constantly trying to figure out how to walk the line between blowing friends away with more information than they might know what to do with and not being honest about how I'm doing if they sincerely want to know. I have realized that there are definite areas that I need to improve in in sharing the information, so I bet there's a learning curve in responding also.

I LOVED the thread about toolboxes! I use most of the usual suspects, and actually fell asleep with ice on my head last night. There really is no substitute for cold for me when I'm having one of these flare-ups. It feels like when you've injured a part of your body and blood rushes to it (are there any rushing fluids?! - sorry, couldn't resist a little Finding Nemo humor ), and it feels hot - that's how my head feels, and I've been at an 8 instead of a 5 since Tuesday.

I don't know, it's possible that it is just an exaggeration of the way my pain always is, not a difference. Like at a 5 my head is the sensation of standing too close to a fire, and at an 8, my head is the sensation of standing MUCH too close to a fire.

The interesting thing is that since I have been paying such close attention to my symptoms, I noticed that I felt irritable about an hour before the flare-up pain hit, so I took a Relpax to try to abort a potential migraine because I have noticed such a pattern of irritability before pain and this was my first opportunity to test my theory while awake. It seems like this time I had irritability before my NDPH flare-up. The other option is that I have just been irritable a lot more often lately, and I need to consider that.

I guess it was my turn to write a book!

Shumanay

Usually, they want someone with you to drive you home after an LP. They don't always want you sitting up right after, even for a short trip home. I'm sure they'll give you info on how they want you to do things.

The one LP I had was a cakewalk, and I even let the medical student shadowing my neuro practice his very first LP on me that day. I had absolutely no complications and was up, dressed, and out the door in about ten to fifteen minutes after.

quote:

Originally posted by Shulo:
Have you had an LP Kelly, or anyone else that's reading the thread? I'm sure I'll get instructions when I call to make my appointment, but I'm wondering if I can drive myself home. That was never an issue with epidural anesthesia!

Shumanay

Shumanay,

I'm so happy to hear that some things I've said have helped you. I'm sorry to hear your pain has been bad and I understand survival mode. When we have pain flares, it is difficult. I think pain makes everything harder. It can be so exhausting.

That is great to hear that your specialist visit went well and also good to know that it was the voice mail that was having problems not that he wasn't paying attention to you! I used to worry about being a pest with my dr. too. Over time, I've realized that my specialist didn't know what a hard time I was having b/c I wasn't calling in when I needed to. Now that I call in more, he is more "in the loop" between appts. on how I'm doing and not surprised when I show up for my check-up. It is still hard for me to pick up the phone, but I'm getting better.

Yay that your dizziness has been fading. It is really hard to function when you have dizzy spells.

As Droolie said, I've heard that you need someone to drive you home after an LP and try to stay flat as much as you can. I have had an LP, but it was during my first hospitalization for my Migraines/headaches a few years ago. I was told to stay in bed. But I wasn't going anywhere!

An 8 since Tuesday! Oh no! I think my head must get hot sometimes too. Especially when I'm having a rough time, I rotate through ice packs pretty quickly. My MIL (mother-in-law) jokes that after I'm done with an ice pack it could warm up her hands b/c it is so warm after being on my head!

Did you happen to ask your specialist about a muscle relaxer? Sometimes, I find that taking a muscle relaxer is just the trick to bring my NDPH to a manageable level. Not gone, but manageable.

in looking for patterns. My patterns for both my Migraines and my NDPH have changed over the last few years, so I feel like I'm constantly learning more about myself. I sometimes still ask myself the title of your post...how do I tell the difference?

Hope you are getting some rest and finding some relief.


Kelly

I just wanted to pop in quickly and say that the flare-up seems to be over. Now I'm just exhausted.

I finished a steroid my specialist wanted me to try to break the flare-up yesterday morning - and the funny thing is that I never gave much thought to the "head on fire" metaphor producing actual heat, although your post made me wonder Kelly - and all day yesterday it seemed as if the heat moved from the back of my head to the front, and my face was flushed bright enough that I took my temperature, which was about 100 all day. Then last night I slept through the night without pain waking me up for the first time since it started, and I checked my temp this morning and it is back to normal. I've taken that steroid before, so I don't suspect a reaction, and I'll definitely be sharing this with my doc, but I wanted to share my news about the heat with you all too.

Thanks for the info about the LP Dragondrool.

Kelly, my doc actually brought up giving me something for muscle spasm, but made changes to other meds during my last visit so wanted to take one thing at a time.

Thanks for the encouragement and hugs.