Hi Nancy,

Thank you for your throughough answer- I am quite aware about medication oversuse headaches, I have been avoiding all NSAID's for well over a month now. I was on topamax for about 4 months, and zonsimide for about 4 months as well. I was on verapimil for 12 months. I have been taking neurontin as needed but refuse to take anything that will contribute to weight gain (depakote/amitrptyline) as right now my goals are to lose the baby weight so I can have another child.My abortive at this point is injective DHE which I use maybe twice a week. I also use muscle relaxers, probably daily but usually not until nightime when the pain peaks and I can sleep. So the way I feel is whatever I'm taking right now is for a short term to get me to the point where I can host a baby basically. I am fully in the grips of NPDH right now and have been in incredible pain- the past three days of taking tramadol 100 mg 2 times daily, I feel like I have my life back. I have been able to get up, go to the park with my daughter, work out, interact with people, go grocery shopping, cook and clean dinner. I am still worried about the addictive qualities but right now I feel like my focus should be on being pain free as well. NPDH is different than other conditions and I'm starting to think may need to be treated differently. I literally have spent the past 10 most, every night, crying from pain and shame in bed and in darkness. If tramadol can get me towards my goals...I'm not sure if I'm really worried about the rebound headache. I did have a headache at the end of each day, but it was the same kind that I am used too. I am going to call my doc after a week on the medication to discuss my concerns, but like I said I feel this is short term and then after my second child, I feel I can really delve into the full spectrum of trial and error of medications. Does this sound insane? I really appreciate your input...Everyone is so happy to have me back. I told them that the med I'm on is supposed have a withdrawal like heroin and no one has even blinked just because they are so happy to see me walking, talking and smiling. I assure you, I don't feel "high" on it either and I am not utterly pain free..I still sense it, I'm just able to function somehow...Oh and yes, I have a spinal, MRI/MRV and bloodwork done- I am fine. I am just a lucky NPDH sufferer.

Fondly,
Kristen 

Oh, as I washing dishes I felt the need to come back and add a little more, because I have read the "Opiods for Migraines"...basically when I was pregnant percocet was given to be, I took it extrememly sparingly maybe once a week but afterwards I realized that it really took the edge of the migraine. My neurologist perscribed it as a rescue medication but he will not give me more than 30 pills a month, and since I take two at a time that is 15 rescues a month...with as severe a condition as I have I felt like I flew through them and just waited for the month to pass...I hated taking muscle relaxers, valium, DHE, ect. and having to sleep the day away when I could take 2 percocet and somehow function. I think it's perhaps because of the way it tricks the brain into "yeah, I have a headache, but who cares..." Either way, I just wanted to let you know that I realize the issues with these drugs and so does my neurologist and he does not hand this stuff out regularly...I definetely think I am a "special" case and after hearing my goals we decided to give the tramadol a try as a "non-narcotic" narcotic...I just didn't want you to think that I hadn't given other options a fair chance and I wanted you to understand the reasoning that had gotten my doctor and I to arrive at this choice. I still have my concerns obviously. 

Hey there,

Thank you for writing back, it is always good to hear what people think. I totally understand, really I do. I was on methadone for 3.5 years so I could live some kind of life. It is good to hear you are well informed, that's all I was looking for, to make sure you had all the information you needed.

Have we had the conversation about Migraine specialists? If so, just ignore this information. 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? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists. Is it time to look for an expert in headache medicine? 

What about caffeine consumption? This is a long shot, but there is a small subset of Migraineurs who are extremely sensitive to caffeine. As little as 1/4 cup  a day may give us -yes I am in that group - can create a medication overuse type headache.  Take a look at this article if you think it will be useful: Caffeine and Migraine.  

Hang in there,

Nancy

Hey Nancy- yes I avoid caffeine at all costs...even before the migraines were daily just because i don't like the way it makes me feel. If I have a migraine, it makes me vomit. I do agree it may be time for a new specialist. I live in Rochester, NY which is an area known for Universities/Hopsitals and the head of of Neurology at one of the hopsitals is one of my father's clients and is ready to take me on as a patient...however I am scared about jumping ship 2 years into my repoir with this doc, even though he has no bedside manner. Also, I am orginally from NJ, a 45 min drive from NYC and visit frequently so I know I could see someone there too.

Again, I feel like my family goals have been shifted a year already and I just want to be back on track. I'm truly thinking that I can dive into this whole heartidly after my second child since I think I will be done having children then. And who knows, perhaps my NPDH will have cleared up as a result of the hormones by then and I could be back to episodic. Last night after reading your emails I went to my husband, who was at the meetings with me. My husband is a very conservative man who does what is best for his family always. He has a government classified job and has never messed with any kind of drug (he wouldn't even take vicoden when perscribed for wisdom teeth). I addressed my concerns about the withdrawals and addictiveness of this drug and for the first time in a year I saw him lose his patience (this has been a long a journey)...his response was "All I know is for the past three day I have had my wife back and for some reason you are continueing to turn over stones and anticipate what could go wrong, just be happy you feel healthy and lets leave it at that". I called my mother afterwards when he was in the shower and her response was similiar, she does agree I am a worrier and always look for what can go wrong next but she does understand what I'm scared of. She was on tramadol shortly for shingles and she did not find she had any issues with getting off of it- but she was not taking it daily. 

You say you were on methadone for 3.5 years? I'm not really familiar with it but did it have a bad withdrawal and was it worth it? Right now, I'm so thankful to have to semblance of myself back. I will call my doc after this weekend to address my concerns, I just want a few more days to confirm that I really am feeling this good on it. NPDH has stripped me of my life and made me scared to participate in regular activities. If children clap, I worry I will get a migraine, my dog barks my anxiety soars...I avoid certain parts of stores and turn off lights immedietly wherever I go. I truly have not left my house in 3 weeks before getting this med, I no longer feel like I am flying without a net. I am just so happy to "feel" normal...I am understanding this is part of the drug- that it has an antidepressant quality and tricks your brain into thining it's not feeling pain. I will do everything in my power to never take more than perscribed and to be honest about how it makes me feel. 

Again, any counsel is appreciated. Like I said, I just want to be back on track, join the living, lose this weight, detox of meds, and get pregnant- those are my goals for the next year so I don't think starting a bunch of new preventives are going to get me there. Also, would the detox be that bad if it was under the supervision of my doctor and I tapered? Thoughts? Thank you, I know this is very personal and specific but isn't everyone's journey....

Just on a side note- the thing with NPDH is one day I woke up and felt like I was in someone else's body and I'm not entirely convinced that it can't unreverse itself but I think I have to get my body and mind healthy first to do that and lying in bed in pain isn't helping...(If you guys every need someone to write or be a support system for NPDH I am willing, it really is a beast and I feel I can relate to every emotion associated with it- I am also seeing a chronic pain pyschiatrist who is helping me find ways to cope- trust me I'll be discussin this on Thurs.!)

Fondly,

Kristen

PS-sorry if this seems loopy my daughter was up all night vomiting and I am a bit tired today!!!!!!! Poor baby!

Hi Kristen,

No, you don't sound loopy at all - I hope your daughter is feeling better too.

I live in Buffalo, NY, a suburb actually, so we aren't that far away from each other! I facilitate the WNY Migraine and Headache disorder support group once a month in East Amherst, NY - just FYI. www.wnymigrainesupport.com 

There is a "true" Migraine specialist in Rochester, Dr. Mann -Greater Rocherster Neurology 2101 Lac de Ville Blvd Ste 1 Rochester, NY 1468 (585) 546-3265 if you want to see a "true" Migraine specialist. I'm not pushing it, just so you know.

So let me understand, you woke up one morning (do you remember the date) and had this nasty headache? That is actually a hallmark sigh of NDPH, knowing the exact day it started, people know exactly when it started. Other things should be ruled out to be certain of this diagnosis.

I'm sure your husband is thrilled to see the "old" you again. As you know, narcotics mask pain, but are currently allowing you to function. Here is some more reading (I know, just what you need!) on narcotics. It was difficult tapering off methadone, but I think that was because I did it too fast, before I knew any better!

Does this help?  

Hi Nancy- small world. Acutally, Dr. Mann is my doctor. He is the one that diagnosed me and since the diagnosis about 5 months ago he has enjoyed weekly sometimes daily calls from me (his practice had been seeing me since I had my baby and thought they were treating my usual migraines, I grew angrier and angrier at my pain level and while they would consult with him I finally caught his attention after the holidays and I felt like it was God calling, I was so happy)....He also gave me my botox injections. My husband was not a huge fan of him at first because of the way he approached NPDH, saying that there weren't a lot of studies done and he couldn't say if I'd get better. I spent the next two weeks in a depression in bed. My chronic pain pysch. the same one Dr. Mann recommended said that perhaps I misread the way that Dr. Mann said that because she has never seen him give up on a patient. Our next meeting with Dr. Mann (I should mention I had been seeing him for a year and half before my husband decided to join us for the meetings and also before I got pregnant), he was much more socialable and I think I knew what I wanted out of the meeting so it was good. I should say that he and his nurse practioner have made every effort to work with me but keep telling me that my condition is "special" and "takes times" and "doesn't always respond to treatment'.  So that brings me back to the last meeting-That was the tramadol meeting. The other doctor I was mentioning is Dr. Ralph Jozephwiz, I may have mispelled...I think my family thinks bc I am not getting better it is the doctors fault...and I don't know how to break it to them that this may be ongoing. I truly feel that if I can get this baby weight off and get my spirits up then I can attempt to go off of meds and see if I am healthy enough to add another member to my family as I so want to. Oh, I am also scheduled for another botox session with Dr. Mann in July and have another meeting with him in May..he is very hard to get in with so you can tell I am truly one of his "special" patients....lucky me :) He also gave me the impression that while tramadol worked on the same principal as opiates, on opiod receptors, that it was not a narcotic, I know that is debatable. Now that I hear you as well say Dr. Mann is the "man" to go to (as several others have also told me), I do not feel he would give me something that was unreasonable, espicially after our long history of trial and error together and him knowing my goals... I would love to try to attend one of your meetings, that would be very good for me. I feel the hardest part of this illness is not looking sick and this has been very hard on me emotionally and physically- I look at pictures of me 1 year ago after my c-sec and I look healthier than now and I wonder, how is this possible?

Fondly,

Kristen