Closer to Fine

Last month, I hit the seven year mark with NDPH. I also reached my 40th Birthday.
I didn’t really want to celebrate either of them. Do you blame me? 🙂

I’m still being treated for Lyme (one year and four months). The details of my treatment aren’t important at this point.

I still have pain. I try to deny it. When all the pain seems to go away, I am so happy that I go around telling everyone that I am finally better. Then it comes back and I pretend it hasn’t. I pretend to be fine until I can’t pretend anymore. Then I get so angry that I cry, because I’m not fine.

Today, as I sit here writing this, my head feels like it’s going to explode. I would almost welcome the explosion if it meant the pain would stop.

I’m closer to fine. Really, I am. I’m closer than I have been in years. It’s progress, even if it isn’t a cure. I can’t help wanting a cure. I don’t want to admit that 7 years is a long, long time to feel like hell.  I don’t want to admit that there is a part of me that fears that it will go on forever.

I hate the pain. Sometimes I find myself hating people who have no pain at all and complain about stupid, stupid things. I find myself jealous of what other people can accomplish because they aren’t distracted by pain. And then I feel shame, for feeling hatred and jealousy.

I’m just being honest. Are my feelings so unique?  I think it’s part of the process of learning to live with chronic pain and never truly being fine with that reality.

And now I’m complaining again. I usually try to be upbeat and encouraging for all my readers here, but maybe we all need to vent.

Do you feel like complaining? Ranting? Getting it all out? Has NDPH ruined your career? Your marriage? Your dreams?  Do you feel like less than you want to be? Less than you should or could be?

I do.

Tell me about it, so I don’t feel so alone in this. I will certainly understand.

Wishing you a low pain day, as always-

Amy


Comments

Closer to Fine — 40 Comments

  1. Hi Amy- your feelings are totally shared. I have had NDPH for 1 year now and am constantly plague with feelings of inadequacy. I am frustrated by my inability to work out and lose my baby weight, being able to take my daughter out places (I don’t want to drive medicated), I watch evidence of my disease pile up around me- unorganized drawers, laundry piles, ect. I wonder what this first year with my daughter would have felt like without pain. I am scared of this continuing. I also had lyme disease, when I was younger.I remember how difficult that struggle was, I can’t imagine dealing with both. All of my tests have come back negative but I always wonder if this could be some sort of flare up. I am see a chronic pain pyschologist who helps…somewhat- she tells me not to go to those dark places and to take a good day for what it is, not to over do it. And to stop being so hard on myself.

    • I’m glad to know that I am not alone, though I am sorry that you are here with me. I want to exercise too…and most days I don’t have the energy. I can’t believe how much that upsets me! It’s not like I love to exercise, but I think I would feel better if I could. It seems like a downward spiral – taking meds, gaining weight, not being able to exercise. Over time I’ve noticed how much weaker I am than I used to be, just because I can’t be as active as I once was.
      I remember the type of mom I was with my oldest daughter – and it is very different than the way I am with my youngest (now 5). I feel horrible about it if I let myself go there.
      I guess I agree that we should not go to that “dark place” but I wonder if that is possible or even a reasonable expectation. Sometimes I need to go there, even just for a little while. And sometimes hitting bottom motivates me to make changes or try a new treatment.
      Don’t be hard on yourself. Being a new mom is a huge life change by itself – adding this kind of pain to it is tremendous. Try to find the joy in the small moments with your little one and hold on to it! Those little moments can get you through the day.

      • Thanks- you posting this today actually did help me… I felt like I hit a bottom today just because of in-laws coming into town and I don’t think they quite grasp the magnitude of this. I can’t control how others perceive this and for right now I just didn’t have the strength to hide how dark I was feeling along with the pain and opted out of going to a dinner…in turn my husband and daughter didn’t go too, which was not my intention. It is hard when you don’t “look sick”….I also feel weak and miss exercise even though I wasn’t in love with it…I would give anything just to feel geniunely exhausted…not sick exhausted. I keep thinking I can overcome this as if my mind will do what my body can’t. But sometimes I’m tired of of trying. But tomorrow is a new day and I can not be so harsh on myself or on others, particularly my husband- poor guy- he’s been a gem through this… I am 3.5 weeks into my botox treatment and a 65 pill treatment of steriods which is more than I’ve ever been put on…I’m feeling 10 % better…I guess I’ll take it, but who knows what tomorrow can bring, the mornings have been better, I haven’t been waking with the headache, which is new. While I have your attention, I am working very hard to lose this weight not just for myself but because we want two children and I will not start a pregnancy 20 lbs overweight…So I have been slowly weaning myself off drugs, which is scary as hell…well anyway…did you have pregnancies with NDPH- I have been hoping that it might provide a respite from this mess…might bring me back to episodic. Or if it doesn’t, how did you survive, did you take medication- I took percocet occasionally for migraines in my first pregnancy but very occassionally. My OB says it would be fine even if it became a daily thing after the first trimester, but jeez I wouldn’t want that. I cannot imagine the pain level I would but in pregnant and caring for a toddler with this…but my shrink tells me not to go there and to stop projecting….but please, tell me your story if you can- you can email me separately if you don’t want to share it here. I would appreciate it so much. KristenASCook@gmail.com

        • It is hard when you don’t look sick. I think sometimes people take it personally, like I’m using the headache “excuse” to get out of doing something I don’t want to do. I typically don’t, even when I really need to.
          Regarding dealing with NDPH during a pregnancy-
          I did feel slightly better during my pregnancy. The pain was not as intense as it had been before it. And following an emergency c-section, my head didn’t hurt at all, which was great because my recovery was very difficult. I was also on plenty of narcotic painkillers, so I bet that helped. 🙂 I had to stop all meds immediately when I found out I was pregnant and that was really tough for me – but I realized that they weren’t doing all that much anyway.
          I’ve gone through years at a time being completely free of all meds, because I doubt their effectiveness and the side effects usually stink. I think you will become accustomed to dealing with the pain without the meds and see that they may not be doing much for you either. As time goes by, I have realized that overall I am weaker and that impacted my ability to recover quickly after the c-section, or when I get the flu or even a cold. Try to strengthen your immune system if you can.
          My middle daughter was three when my youngest was born. It was definitely a challenge to care for them (and my oldest who was 7) in the midst of the headache. I don’t know how I managed exactly. I just did. I know I felt a ton of guilt over not doing things with them or taking them as many places or spending “fun” time together. I know that I did my best and I hope that they will understand that someday.
          I hope that helps – let me know if you have anymore questions for me. 🙂

          • Thanks so much- it does help….it’s something that has been worrying me…I also doubt the meds effectiveness. I am slowly weaning myself off of all of them right now and just keeping abortives. I am slightly miserable. I’m meeting with the neurologist tomorrow though to discuss some more options because I’m having trouble making it through the day! I really do appreciate you taking the time to answer my question- this is scary and I feel like a lone soldier and like no one can help…and I know I have to face the pain because, well life is worth living…even with pain. Ideally, I would have been pregnant at my daughters first birthday which was two weeks ago- but we never knew this hell would descend on us. I’m lucky I we started our family young- because of my migraines I went off of bc and immedietly got pregnant (without trying- hahahah don’t worry I’m married, happy, financially stable)…and then this happened..I also had to have a c-sec because she was breach. The docs theory i was so traumatized by her being breach and risks of preclampsia that I developed NDPH. I don’t by it, but something did happen, I think it was more hormonal. Either way, I wanted to be done having my babies by 30- I’m 28 now…so now my goal is get off of meds, stop being scared of pain and lose 20lbs, easy enough right! Thanks again!

          • Hi everyone. I hope you’re experiencing a very low pain day. I had an appointment on Monday to be evaluated for an Occipital Nerve Stimulator. Looks like I’m going to do a trial, but probably not for a couple of months. They said that if you’re evaluated by a “pain psychologist” (who knew there was such a profession?) prior to having a trial, insurance is more likely to cover it. I guess they want to make sure there isn’t something else going on and that you don’t have unrealistic expectations of the surgery.

            Kristen…happy to hear that Tramadol is helping you. I take it occasionally. It doesn’t help me as much as it helps you, but it does make a dent in the pain.

            Zyrtec (allergy medication) has been shown to be effective for chronic head pain. It knocked me out, so I couldn’t take it and work. When I’ve taken it in the past for allergies, I didn’t have that problem, so maybe I had that side effect due to its interaction with other medications I’m taking.

            I joined a club in November and started water aerobics again. I can’t say that it has made much of a positive impact on my head, but I sure feel a lot better from the neck down! 🙂 I have noticed that when I have a bad headache and I swim anyway, it does usually help some. I find that swimming and yoga are the only two things I can do for exercise that don’t make me feel like my brain is banging against the inside of my skull. 🙂

            Hang in there everyone!

            Sending hugs to all! We sure deserve them!!!

          • Julie- I go to a chronic pain psychologist on a regular basis- hope you have luck there. The tramadal gave me 4 really unbelievable days and then I had 2 really bad days, I don’t if it’s because I over did it or if it’s just not strong enough- today is so so….But for 4 days I felt like I had my life back so hopefully I can get back that feeling! I’m going to try and do my “15” minutes of exercise while baby naps 🙂

  2. Amy,

    You have every right to rant. Everyone needs to do that sometimes.
    My daughter has expressed some of the same feelings as you. She gets angry when others complain about feeling bad, sick, or of having a headache.
    Most of the time I just try to be understanding. A few times I tried to point out that it even though their pain may not be as constant or seveer as her own, they still have a right to complain when they arean’t feeling good either.
    But, I always try to remind myself that I really don’t know what it feels like to be in chrnoic pain. And I know that I probably wouldn’t be nearly as strong as she is, if I were suffering from the same thing.

    You are both so brave and strong. I can only attempt to imagine how challenging it is to live your lives while constantly feeling like crap.

    It’s only natural that some days you will have to give in to that feeling of anger and frustation. It is proably best to accept that you will have days like that and go ahead and vent. Then, you can pick yourself up again and keep going. Good luck in your search to find your pain free days!

    • Thank you Wendy! 🙂 It is so validating for me to hear that it’s okay, and that i am not alone in feeling this way. I don’t rant every day or even very often, but it is necessary sometimes. This illness is so, so frustrating.
      How is your daughter doing? Any better?

  3. I just got home from a long night out with my husband and friends and was very happy to read everyone’s posts, though I wish everyone felt much better physically and emotionally. Thank you to everyone who shared.

    I’m glad I went out and really did have a good time, but it was difficult not to think about how awful I felt and how much better it would have been if I hadn’t felt so awful.

    I’m so tired of pretending I’m fine, I can’t see straight. It’s exhausting! On the other hand, I don’t want to bring everyone else down with me and have people not want to be around me if I complain.

    I started to exercise again in November. The only 2 things I find I can do that don’t exacerbate the pain are swimming and yoga since there’s no impact and jarring of the body. It has helped me feel better from the neck down. 🙂

    Fingers crossed that there’s a cure on the horizon.

    • Hi Julie – That’s great that you can do yoga and swim! I love yoga and think I could handle it on low pain days. Walking, hiking and being in nature make me feel better too, but with the kids, it’s not always so easy. And I often don’t have the energy for it either.

      I struggle with not wanting to bring down the people around me. I understand what you mean about that. No one wants to hear us complain. I guess that’s why I did it here! I knew I would be met with understanding.

      Hope you are having a low pain day. 🙂

  4. Hi Amy, I can totally relate to everything you are going through. I’ve survived 37 years so far and I’m so glad to have the “low pain” days when they come. Over the years, I have found some relief in taking the over-the-counter medicine called Percogesic. Most drug stores have it in the aspirin isle. This contains an analgesic that helps me get to sleep when I have an intense headache in the evening. It usually helps to break the intense pain cycle. I find that if I go to bed with intense pain, I wake up with the same pain! Then I’m doomed for the next day. I have no idea how I even get to sleep! I guess I’m just so wore out from the constant pain. Anyway, this was suggested to me on the first day of my extremely painful onset by a pharmacist when I was 20 years old. It’s the only drug that has even helped in any way, although it won’t take the pain away! It just makes you sleepy and then seems to help break that intense pain cycle for the next day. I’m very careful not to overuse this drug since I don’t want to ever lose the effectiveness. I take 2 to 3 pills at the most at bed time and it takes awhile (about an hour) for me to get sleepy. For others, it may be a faster reaction. Hope this helps! Terri L

  5. Hi Terri- I know your reply was to Amy but I just wanted to jump in..I googled Percogesic because I am always looking for a new remedy. It appears to be tylenol with an antihistimine- which is interesting because I do find that benadryl does help me with my migraines, whether it’s nausea or just knocking me out! When I was pregnant benadryl was one of the only things I could take and it helped immensely. Also, I find that Pamprin (when I have my period) really helps- it has basically the same kind of ingredients but also a diuretic, which why it’s for that time of the month. But I find that two Pamprin work almost as well as two percocet! I’m going to go pick up some Percogesic tomorrow and see how it works for me because I am at my wits end right now!

    • I’m so glad you are going to try the Percogesic. Yes, it has some of the same ingredients as Benadryl, but this particular combination allows me to get a good nights rest with no bad side effects. Hope it helps give you some relief when the pain just gets unbearable. Terri L

  6. Hi Everyone- I just wanted to jump in again and let you know that I met with my neurologist yesterday who said that no matter how much pain I was in the best thing for NPDH was exercise. When I was first diagnosed I did exercise and I remember that it was the only clarity I got for the day, perhaps because the blood was flowing, the key was finding what was right for my body. About 3 months ago I started having all sorts of tests and went into denial about my diagnosis and became very depressed and stopped all movement all together. Two days ago I started bringing in just 15 minutes of toning a day…I’ll up in by 5 minutes a week and I’m reinstating my gym membership tomorrow. ALSO, I discussed with the doctor how the only thing that works on the pain is narcotics and how we know they don’t work on a long term basis because your body needs more and more. I explain that I want to be off of all meds in 6 months but I need to lose 15-20 lbs so I can have another baby. We decided to go with Tramadol. I took it yesterday and this morning. Yesterday was amazing. I was very nauseous and had to lay down, which is not unusual (I know the nausea was from the medication because it was severe)…but I the pain was so dull. I could feel the swelling/tightness there but it was numbed…I guessed Tramadol is a non-narcotic narcotic that tricks your brain into how it feels pain. I do get that this is addictive in the long run and that makes me nervous, but I can tell you I went out to lunch with my husband and daughter, ran errands, cooked and cleaned dinner, did laundry and most importantly laughed, sat in sunlight and enjoyed the company of others- WOW, I haven’t had a day like that in about 10 mos. So I’ll take it for now. Who knows, perhaps I’m only day 2 into it so I may not like it in a week or so but just wanted to share. Yesterday was not a high pain day for me to begin with, I know because I started the morning unmedicated so I’m not sure how it will work on more severe days (he told me there are other ways he can give me the meds- time released or other so we can play with it, and I have been on everything and I would put my daily pain on a level 7-8) but it’s a start and if it gets me moving and out even 3 days a week I’ll be a happy camper.

  7. It’s a good feeling to heard that I’m not alone with those dark days. Sometimes I just can’t anymore support the strong pain and I’m crying too. I’m not working as I’m not able due to my pain. We live with my husban”s salary and financery it’s not easy to deal without mine. So it adds more stress. When I have better day, I’m thinking to find a job and be exited about the idea…But the pain always come back…
    Sometime I’m really frustrated because I can’t make plans with friends and family. I have to go day by day so we can’t plan a weekend to go out. At the end of May my daughter has a soccer tournement out of town and I really want to go with my husband and her. I feel sad just to think that maybe I won’t be able. I feel alone at home during the week without being able to go out and do something like even shopping. I always have to do a snap. Are you like me? Do you have energy to do things? Are you working? The pain takes all the energy that I have…

    I have NDPH since 1 year, so I can’t imagine how you can feel after 7 years. It’s not imaginable…

    • Dear Andree’, Your inability to function at normal energy levels is also my own experience. I’ve had NDPH for 37 years and I’ve been around the block with neurologists and drug regimens… all with disappointing results.
      I take NO prescription drugs and keep active around the house to cope. I was a competitive bodybuilder years ago when the meds and pain were out of control. Since I had become suicidal from constant intense pain, my husband encouraged me to quit my job. I started working out at the gym 5-6 days a week. This actually helped me wing off all meds of any kind and did reduce the pain somewhat. I hated the drugs that “mask” the pain because I still felt the pain but had “cotton mouth” or other negative symptoms. Now, I only take a few aspirin in the afternoon if the headache is building rapidly. Then, I take Percogesic if the pain is intense in the evening. I’m off ALL caffine, and I’m not working at this time. I find that I can work a part time job if it’s not too demanding. That’s all I have energy for. Thankfully, I don’t have to work right now since my husband is currently employed and we are getting by ok. Get used to people around you not “understanding” the scope of your pain. I just try not to talk about it and keep my social life at a minimum. I’m blessed with a husband who does understand and that’s all I need for now. Housework and yard work is rewarding and productive so we are happy. Hope this helps. Terri L

  8. Hi

    I’ve had this dreadful thing for 13 months now I’ve just turned 45 . I sometimes hope I break , have a stroke , anything so someone will fix this . The hardest part is seeing your family try to be understanding when really they have no ideas what it feels like . I feel alone , in a dark place with no way out . I’ve had all the tests seen all the professionals chiro , physio , neurologists and nothing I tried Botox , all the migraine meds . The side effects are often worse than the headache . I’m lost I don’t know how I’m going to survive this thing . One faint on a beach in Bali and my life changed forever any suggestions anything I will try.
    Jannette

  9. Amy,

    This is the first time I’ve found your blog, and the first article I’ve read. THANK YOU for putting into words what I’ve been experiencing.

    I’ve had this headache since 27 November 2007, which makes almost 4.5 years. I’m only 19 years old, and I had the headache through almost all of high school (since the beginning of 10th grade). My grades suffered because I only had energy for either extra-curriculars or homework, and my social connections to my friends were the only thing keeping me sane, so homework didn’t happen. I would fall asleep in at least one class a day, often pissing off teachers in the process. I’d had months-long headaches before this one started (I haven’t had a pain-free birthday since I turned 11), but this has been the main one.

    My mother couldn’t understand. She tried to, and she never accused me of faking it (thank Goddess), but she simply couldn’t comprehend the realities of my day-to-day life. In my 11th grade she had major surgery, so I was stuck trying to take care of her, and the house, and myself, and it didn’t work. I was suspended from the most important thing in my life, my high school theatre club, because I failed more than two classes. All because I was being stretched way too thin.

    We’ve tried to find what’s wrong, obviously. I’ve seen over a dozen doctors in three states with varying specialties in the past 5- years.
    I’ve been diagnosed with everything from a patent foramen ovale (or a tiny hole in my heart), a Chiari I malformation (minor swelling in my brain stem), Lyme disease, the lyme co-infections Bartonella and Babesia, (cat scratch fever and a similar infection to malaria, respectively) to elevated lead and mercury concentrations. My menstrual cycle went from being a regular 5 weeks to totally off the wall. (I’ve gone up to 27 weeks between cycles, at this point). And those are just the diagnoses that haven’t proven false!

    I’ve tried
    —Prophylactics:
    ~Topamax (anticonvulsant: worked for 7 weeks, at which point the current headache started; also killed my appetite so I lost 22lbs in the process)
    ~Elavil (antidepressant: no effect other than to give me upwards of 50 radical mood swings a day; made me sleep 17 hours a day)
    ~Cymbalta (antidepressant: made me unable to sleep at all)
    —Abortives:
    ~Zomig (knocked me out for 24-36 hours a pop)
    ~Amerge (turned my brain to cotton candy and knocked me out for 24 hours)
    ~Treximet (caused a burning sensation in my hands and arms; increased sensitivity to heat)
    —High powered antibiotics at insanely high doses for extended periods of time to treat the infections (Rifampin, Zithromax, Doxycycline, Minocycline). These just made me incredibly sick to my stomach, and gave me food sensitivities to animal protein. As a result I was chronically underweight.
    —Alternative treatments including Co-q 10, Boluoke, and HMD (Heavy Metal Detox). Also, accupuncture, accupressure, biofeedback, guided visualizations, and Reiki.

    The only thing that’s helped AT ALL has been the Reiki. And I’ve felt a little better since I gained weight, but not much.

    I don’t look sick. I don’t act sick, because I’m too goddamn stubborn to let it show. But I am sick. I’ve been so tired I couldn’t get out of bet except to eat and use the bathroom for days on end. I’ve missed out on school dances, school trips, my Junior and Senior Proms, piano competitions that I’d planned for for years, non-profit meetings. Hell, I planned a check-in procedure for an event for a non-profit group, and I couldn’t even go to the event because I was too sick and tired and hurting to get out of bed!

    I, too, get furious when I hear someone complaining about puling a muscle or having a cold. I want to bash their heads repeatedly into a brick wall every day for a week, then tell them “This is just a taste, motherfucker. Get over yourself!” Then I go hang my head in guilt, because I have never even subconsciously wished this on anyone. My friends have been amazing. They give me hugs, chocolate, a warm shoulder to cry on, neck massages. But they can’t take away the pain.

    Sometimes I wake up in the middle of the night, and realize I was just having a nightmare of a future where I’m 40 or 50 or 60 years old and still in pain. I think I’ve already forgotten what it’s like to not have a headache. I’m terrified that I’m holding onto the pain, because I’ve gotten scared of the ‘silence’ that would be left. I fear I’ll one day maybe have this headache on my wedding day, or when my children are born. I’m angry, because I’m not even old enough to have a fucking drink, but my life has already been altered by this monster. How dare Fate give me this? Why me?

    So no, Amy. You are not at all alone. We are all of us here with you, in all our bruised battered and twisted glory. And we’re praying for you just as much as for ourselves. May we all find the answer we so desperately need, and so rightly deserve.

    ~Mealla Aói

    • Mealla, I sadly welcome you to this forum. (I don’t wish this disease on anyone.) I think it’s worse to have NDPH when you’re so young as it causes you to miss out on many events that all young people should enjoy. I’ve had my headache for about 4 1/2 years, like you, but I’m much older, 53.

      I’m watching an episode of “The Doctors” right now. The topic is “What’s Really Living In, On & Around Your Body?” They just mentioned that some intestinal parasites can cause headaches. You can have a stool test to see if parasites are present. I’m going to do a little research to see which parasite can cause headaches. Maybe there’s a connection?

      • Thank you, Julie, for your support. I’ll check out the parasite connection, and I really appreciate the reference. I’m sorry I didn’t get back to you sooner.

        My mother took me for frozen yogurt earlier. She didn’t know, and the shop didn’t say anywhere, that it was sweetened with Splenda. Artificial sweeteners of any sort are a HUGE trigger for the worst of the migraines that I get on top of the everyday headache, so needless to say I won’t be going back there again. Thankfully I was able to feel it coming before it got unbearable, and get myself to sleep so I didn’t experience the worst of it. But I was knocked out for about 8 hours this afternoon. Argh.

        Again, Julie, thank you for your support and your welcome to our little community here. Sending healing thoughts and energy your way!

        ~Mealla Aói

        • Oh, no! So sorry about the Splenda debacle. Sending healing thoughts and energy your way too and to everyone else here. We deserve better!

          • We do. And I’m mule-headed and stubborn enough to still have hope that we’ll all get the answers and relief we deserve someday.

            It’s funny, I once had a friend say that they would take the pain from me if they could, and I told them I wouldn’t let them. I know I’m strong enough to handle it (99% of the time, anyway), and I would never want to see someone else suffer this.

            So here’s wishing for hope, strength, and healing for all of us.

            ~Mealla Aói

  10. Hi Amy:
    I’ve been recently diagnosed with NDPH myself. Symptoms began less than 2 months ago. Possbily the complication of recent dental or neck surgery, but who knows? I’ve just started on topamax but after reading some of your posts I wonder if this is the best course of action. Will moncycline & singulair give better results if used this early in the process, or are the complications just too severe?
    Thanks, Ed.

  11. Hi Amy,

    I have visited your blog before, but I don’t think I have ever left a comment. My headache turned 11 years old this year, and this past year has been the worst yet. NDPH struck when I was 23, one year out of university and a newlywed – the start of my “adult” life. I have struggled over the years to keep working and have finally given up and went on disability a year ago. It is hard to comprehend that my career may be over already.

    Everyday is a struggle and I don’t know how much more I can take. The fatigue has gotten so severe that I can barely make it through the day without a nap (apparently the pain causes me to have lots of mini awakenings which prevents me from getting to the restorative phases of sleep). I have 3 children, a 5 year old and 2 year old twins, and I cannot take care of them myself for more than a day at a time. My house is a disaster. I am drowning in things that need to be done, but I will never have the energy to do them. My family is tired of helping me, they seem to think that if I rest one day that means I should be good the next, which is rarely the reality.

    The neurologists and chronic pain specialists have given up on me – I don’t respond to any of the medications. I am hoping I can find a doctor that is knowledgable about occipital nerve stimulators to see if that could help me, but I live in Canada and I don’t think they are approved here so it could be difficult.

    There are times that I wish that this condition was fatal, at least there would be comfort in knowing that an end is coming. It is hard to feel sympathy for people with acute pain problems (such as a broken bone, minor surgery, sprains, episodic migraines) because I would give anything to know that this pain would end soon.

    I wish I had something positive to say, but right now I don’t. I am tired of everything important to me turning to shit just because of this damn headache.

    Thanks for the opportunity to vent, it is hard to talk about these things with people who think this is just a “headache”.

    Jennifer

    • Hi Jennifer. I live in Michigan, but I know that there are at least 2 doctors in Canada who do the ONS surgery. One is Dr. Andrew Parent in London, Ontario. There is also a doctor in Quebec City, but I don’t know who it is. I belong to an ONS group on Facebook. There are a number of people on there who are from Canada. If you’re interested in joining to get some information, let me know and I’ll arrange to have you added to the group.

      I am hoping to have an ONS trial this summer.

  12. Hi Amy,

    I have had NDPH for nearly 3 years now. I’ve been out of work since it started, and am on SSD now. I’m a single parent of 3 children. I’m so sick of medications; none have worked, and the few that help, it’s minimal and temporary; my body quickly builds up tolerance and rejects it. I don’t remember what it’s like to be pain/headache free. That’s my Neurologist’s goal, but they can’t do it. The one I see is the best one in my part of NY state for my condition.
    I’ve tried so many meds, I can’t remember them all. I’ve been through all the tests. I’ve tried chiro, occipital nerve block, massage, herbal remedies. I was told that NDPH is very medically resistant, and there’s no cure unless it spontaneously remits on its own. I’d suffered from migraines for years before getting stuck in this chronic 24/7 state. My baseline daily pain level is a 4-5, which I’ve learned to live with. I can function at that, but the days where it’s 7, 8…or if it reaches 9 and stays there for more than a day, I have someone take me to the ER for relief, which only happens about 2-3 times a year, thank God.
    Some non-medicinal things that have helped are: exercise. My Neuro strongly urges this, if possible, and I do my best to at least 2x a week. Also, as a woman who suffered bad periods all her life, and had menstrual migraines, getting the Mirena IUD was the best thing I ever did (again on the suggestion of my Neuro). It eliminated my periods, and my monthly menstrual migraines.
    I take full advantage of the good days, thank God for what I have. But being in chronic pain for so long (3 years this October), is so disheartening. Family and friends don’t really ‘get’ it. I’m glad I found this blog…I often feel alone and isolated with this.

  13. I want to start by saying I’m not happy that this is how all of us had to come together. At the same time I am relieved that there are other ppl out there that are going though the same things that I am. I just hit my 1 year mark with NDPH of the 25th of this month. The road has not been easy but I am still hopeful. Like many others I had flu-like symptoms for two days then woke up on the third day to my headache that has yet to give up. I am in the double digits in the amount of doctors I have seen. First thinking it was a sinus infection. Yes, I did have one. Ur after treating it I was still left with my headache. Then they thought migraine. I tried nearly every migraine medication available (including imitrex, which I thought was going to kill me) as well as two EEG studies. Neither worked or showed anything abnormal. Then it was post meningitis headache. Then NDPH, then sinusitis, now finally NDPH after my sinuses showed only the slightest inflammation. This is new and scary. No one around me really gets it. I hate it when ppl ask how my “headaches” are doing. I don’t have headachES. I have a headache that is present from the time I wake up to the time I go to bed. My medications work to some point (gabapentin, mobic, tizinidine, and Percocet) but I know they r only semi masking what is really there. My husband wants his happy wife back and I feel so horrible knowing that I do not feel the same way I did a year ago. I do my best to stay up beat but being in pain every day really takes its tole on you. He is supportive thankfully and understands and tries to help when I have a bad day with this. I am so very thankful that I found this site and all of you guys though! After reading through everyone’s experiences I atleast have some new ideas to try as far as medications and treatments. Cymbalta is definitely one that I want to try due to its pain management and antidepressant properties. I could definitely use a little help being cheerful! 8) Being only 1 year into this it scares me seeing how many ppl have gone decades suffering. I have had to go to the er twice and I hate the attitudes from the doctors and nursing staff knowing full well that they just think that I am looking to score drugs. Like there is no way a person can haves continuous headache for this long! I start nursing school in the fall and I’m praying so much that NDPH won’t get the best of me. Its only two years but right now that seems like an eternity! At the very least I just want to find a medication regime that helps so I’m not having to rely on the narcotics everyday. One can hope. Thank you for letting me vent and have a voice. I pray that we all find relief and more pain free days. Right just one would be like heaven. 8) until later…..

  14. Hey! My name is Reed. I am 17 and I have suffered with NDPH for 4 1/2 years, which I understand is nothing near the length of time some people have suffered. I use to search the Internet all the time and read these stories about people’s experience with this horrible and life changing condition. I never really saw a lot of stories of people getting better but I realized that if I ever got better I would not look back and definitely not spend the time letting others know that there is hope, because I would want to start living again as soon as possible. I want to let everyone know that it is possible to get better. I use to function at a level 8-9 constantly. In over the past year I have experienced a great amount of relief. I’m talking I have gone several hours without pain and for the most part I live with a level 4 headache. What caused a significant difference for me was going on minocycline and getting nerve blocks by Dr. Matthew Kline in PA. I want to let you know that I believe with every fiber in my being that one day there will be a cure for this. This is not the end and headaches should not define who you are. Call me crazy, and I know I might regret saying this the next time I have a spike in the pain, and it might be because i am getting better but I don’t think if I could go back and change this I would. There is a reason I was given this burden and I plan to spend the rest of my life helping people who suffer from this headache from hell. I will make sure something good comes out of this if it’s the last thing I do.I have lost a ton in mylife because of this, but I can’t say I haven’t gained a few things too. The people I would have never met unless I was sick have impacted my life in a major way. These comments and most of all this blog is inspiring because I’m reminded how far I’ve come, how I’m not alone, and how badly NDPH needs to be cured. I really wish right now I could tell you I’m 100% better and that soon you will be too, but I can’t. Thank you for your strength and courage, and letting me know that no one suffers alone. A lot of people would tell me that I was so strong and they didn’t know how I dealt with this crap, but the truth was I didn’t have a choice. I could either endure or end it all, and let me tell you that sometimes the second option sounded so good. My headaces did not get the last word. Better days are ahead. Thank you Amy, your blog has blessed me in so many ways!

    • Hi Reed,
      I’m glad to hear you’re feeling better. Can you tell us what kind of nerve blocks you received? Also, did you ever try depakote for your headaches?
      Thanks for your response and thanks Amy for helping all of us

  15. I was just diagnosed with NDPH after 6.5years of symptoms but no answers. It has ruled my life. I was so excited to find your blog. I’ve done enormous research into chronic pain and know a lot about it, but Ive never met a single person like me. Thank you.

  16. Hi there
    II don’t live in the US and I don’t know whether I should Join you or not because I haven’t just been having daily headaches but also vertigo along with them. The doctors I’ve seen haven’t been clear on the type of headache I have: chronic migraines with MAV along with tension headaches? Nevertheless, they never mentioned NDPH. Could it be that?I know what’s it’s like feeling pain every day. The only time I was better (yet not completely pain free) was when I was on Sibellium.But when I stoppped taking it it all started again and my headache became resistant to Sibellium which didn’t work again. Topamax was an unfortunate choice too.Am on new medication now but to be honest have lost hope it will work.I’m thinking of trying alternative medicine or accupuncture. Will it be worth trying?
    Hope you have more free pain days as possible

  17. So many of these comments ring true to me. My headache is 11 1/2 years old now. I’ve been on topamax (stupid-max), several antidepressants, migranol, anaprox, klonopin, flexoril, midrin, had occipital nerve blocks, chiropractic, physical therapy (and a bunch more meds that I can’t even recall right now). I hurt every day. Every few weeks there are the blessed few days where I don’t hurt from the moment I wake up until the time I go to bed. I’ve been to several neurologists who just told me I had migranes and shoo’d me along with a prescription. I’ve paid thousands out of pocket for scans and co-pays and treatments that insurance doesn’t cover. I don’t look sick. I laugh and go to work and try to not pay attention to the pain. No one knows how much I hurt except those who are closest to me. Just writing this I cry becuase this pain makes me feel so helpless. I have never called in to work because of the pain. Its just a headache, I tell myself. If I call in today, I could call in every day for the rest of my life. Sometimes the pain is so bad I can’t remember the names of people I know well. When it’s really bad, my inner ear hurts and i feel like there is a vise around the base of my head. I’ve started seeing the team at MHNI in Michigan, who are apparently world renound for head pain treatment. If a medication works today, there’s no guarantee that its going to work tomorrow. The people I meet offer suggestions but honestly, the more they offer suggestions the more I want to slap them. Its good to know that someone out there is going through the same thing I am.

  18. My headache is now 4 months old as I sit here at work crying and waiting for the day to end. It is all I can do to get through the day and get home to the bottle of vicodan waiting on my cupboard. I only take 1 a day but it seems that I live for that relief when my headache goes from a 9 or 10 down to a 6 or 7 and if I’m really lucky a 4 or 5! I’m scheduled for botox next week and pray that it gives me some relief but I’m not very hopeful. None of the treatments so far have helped for more than a few minutes and I am so tired of the pain. I am so glad (and sad at the same time) to find people that actually understand what I am talking about! I also have tinnitus and a lot of short term memory problems – probably a combination of the topomax and inability to concentrate. Just 5 months ago I competed in a 10K, now I can’t exercise because as soon as my heart rate increases my head throbs so much that I can’t stand the increase in pain! I’ve been through so much testing in the past couple months that I feel like a pin cushion and they just keep coming up with no answers – “probably NDPH – but let’s try…”. I feel like I’m going crazy! Well – thanks for listening!!! Back to work!

    • Kim,
      Have you considered being tested for Lyme and other tick-borne illnesses. My husband started his headaches almost 2 years ago. Though Lyme testing is very inaccurate a good LLMD (Lyme Literate doctor) will make a clinical diagnosis. Antibiotics can do wonders. My husband is about 60% better after 8 months of antibiotics and other supplements. He went to many neurologists, headache specialists, chiropractors, physical therapists, etc. Only antibiotics have helped so far. That includes botox, other injections , and many headache preventative drugs. Fiorocet seems to help his headaches for the most part. That’s only a short term fix though.

      • No I haven’t considered that – we are pretty savy to tics and I am 99.99% sure I haven’t had a tic bite. My husband is a scoutmaster and we are very cognizant of checking anytime we are in an area of concern. I have very short hair so no place to hide there either but maybe you know something I don’t? Is there another source I should look at? I have allergies to codiene and percocet so many of the traditional “migraine” medicines are off the table because of the ingredients they contain. If the botox doesn’t work I wouldn’t mind a suggestion for something stronger than excedrin – which doesn’t work at all – that I can take at work. I can’t take the vicodan because it makes me just a little loopy (for lack of a better term). Anyone have a suggestion? What has worked for you? (That doesn’t have codiene or percocet)

        • My husband has no recollection of being bitten by a tic but many feel that some infections can be passed by mosquitoes. We know a man who has had bad tinnitus for over 5 years and only recalls mosquito bites. Anti biotic treatment is slowly helping him.

          • Interesting – I do get bitten by a lot of mosquitos and they get inflamed quite a bit – I will approach my doctor about this next week at my appointment. Thanks for the information!

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