Comments on: Tell Your Story

By: strongcook

strongcook — Wed, 23 May 2012 17:38:21 +0000

Hi there, I feel so bad hearing you go through this. Your sound exactly like me about 5 months ago. I went into despair and thought that everyday I woke up with the headache was another failure. I am now being treated with tramadol and methylergonovine and am doing about 70% better. My pain definitely escalates during the day, but through knowing my body and reaching out to a support system, I am doing much better. I also see a chronic pain pyschologist to help me deal with all the stress this causes as well as working on biofeedback (which has helped immensely as well). For some reason accepting my condition and acknowledging that I am sick has helped in someway, now I look forward to the good days. I still get very frustrated and look at healthy people and wonder what it is like to wake up and feel fine. Just this past weekend my husband and I took a trip to my hometown, which is a 5 hour drive, and we had to pull over often for me to vomit. Somehow though, I have found a way to keep living. Keep working with your neurologist. There is hope, people do get better from this, they just aren’t on here writing because they are out being healthy. Lucky ducks.

By: Kaylie

Kaylie — Wed, 23 May 2012 16:51:23 +0000

I have just been diagnosed with NDPH by my neurologist, but we are still looking for a lesion just in case, and I think I may be one of the few people who actually want a brain lesion, just so I have a cause of action. I have only had this headache for 53 days now (it began on April Fool’s Day, which is a source of amusement for everyone but me, apparently). Reading all your posts just makes me cry in despair, I can’t deal with this for another month, let alone a year, 5 years or a decade! I have had to suspend my university classes as I can’t even leave the house most of the time, and studying has now become the most excruciating task I set out to do. Even reading this, I feel like someone is crushing my eyeballs, and I have the screen dimmed all the way down. I have had some success with endep, but it makes me sleep for about 17 hours a day, and about 5 of my awake hours I only have a pain level of a 4 or 5, but after that it’s invariably 7-8.

Do any of you get vision problems when it gets bad, accompanied with very severe tinnitus? I went to an ophthalmologist and after they shon their torch in my eye I immediately went to an 8 and couldn’t see on my left side. I can’t think properly anymore and I’m so angry and exhausted.

I hate the way everyone around me treats this as though it’s no big deal. It’s ruining my life.

By: strongcook

strongcook — Thu, 03 May 2012 22:16:01 +0000

Hi everyone, a follow up- I’m going to put this post in two places since I sort of started to mention it on another thread. Basically, I have tried all sorts of medications and IV’s, ect. had every test done…I went to my neurologist two weeks ago and told him the only thing that gives me any “relief” is the occasional percocet, which is not a daily option. But I couldn’t continue living in this fashion. I hadn’t left my house in 3 weeks. He put me on tramadol, 50 mg, two tablets three times a day. Would I say I’m totally better, no. Would I say my quality of life has increased dramatically- YES. I have been out every day. I can drive and not be drowsy. I know this is an addictive medication and it’s “tricking” my brain into thinking it’s not in pain. Basically, my plan is to wean from all other meds, work off the 20 lb extra lbs of baby weight and hopefully wean from this drug so I can get pregnant again. Some days, it is like NDPH never happened to me. I just felt like I needed to reach out and tell you all about my positive experience.

By: strongcook

strongcook — Wed, 28 Mar 2012 23:59:31 +0000

Post Partum Headache…..It has been a year for me since I developed NDPH. The headache started at 38 weeks of my pregnancy. They thought I had preclamsia…no it was just a migraine. Either way, I delivered via cesarean (my baby was breech) and continued life as a first time mom. I wanted desperetly to breastfeed so I did for about 7 months and during that time just took the occasional percocet for the pain. I thought it was going to stop. Soon I realized I wasn’t doing my daughter any good sleeping all the time and being in pain so I listened to neurologist and started seizure meds as a preventive. Now here I am 6 months later on 3 different epilespy meds and enough other drugs “to bring down an elephant” according to another doctor. I have decided to slowly wean myself and face the pain because I am in pain anyway. Last week I received my first round of “botox” injections and I have to admit I feel some relief. I will post and let everyone know if I feel more relief as it sets in more. The doc said it would take 2-3 weeks for full results. My hope is to continue to wean from drugs. First is the blood pressure meds, then the seizure meds, then the anti-depressant. I haven’t taken an NSAID in a month. The pain is always there though. I have found that DHE can help sometimes and the occassional muscle relaxer. Percocet makes life manageable but that’s addictive and not a full time option, only a rescue med. During this time I have felt like I have jumped into someone else’s body. To go through this post partum and not be able to work out and lose my baby weight has made me incredible depressed. I also want to have more children and don’t know how I can do that with extra weight on my frame or with this condition. All I know is somehow I need to get off of these meds and lose 20 lbs. I know this could all be hormone related but any stories of people going through pregnancies with NPDH would be comforting. I feel like I’ve started to live in fear, fear of pain. I know that I know what the worst feels like so I know I should move forward. I’m also praying that the botox injections will give me some relief for the next few months. I am trying to act like my old self and pretend like the pain isn’t there and at the same time not overdo it. I have faith that this is not a permanent condition. I am glad a found this site. I have read all of your stories a bunch before I chose to share my own. I have been in too much emotional pain to share but now I am ready, ready to move forward, accept my condition and hope for the best.

By: asigsilver

asigsilver — Tue, 17 Jan 2012 19:12:44 +0000

I am back again and excited that I may have found my cure! I have started a blog also to help others like me, like all of us! headachesruvival.wordpress.com
I encourage all of you to check it out as my answer may be yours as well!
I still have my daily headache but the severity level has become much more doable! There is a major controversy in the medical field regarding Thyroid levels. Hyperethyroidsim has many symptoms, one can me a severe daily headache! My levels kept testing “normal.” However, I fought it after realizing how many other symptoms I had for hyperthyroidism. I am now with a endochronologist whe believes in treating the PATIIENT not the numbers!
PLEASE…ALL OF YOU HAVE THIS CHECKED OUT! It might be your answer as well. Also please check out my sight as it can offer support to all of us. I welcome suggestions and comments! Thank you and God bless you all! Angie

By: Amy Goldfarb

Amy Goldfarb — Tue, 15 Nov 2011 17:34:16 +0000

Dear Amy,
I just had a fascinating phone call with Dr. Shevel in South Africa. I am eager to speak to a fellow sufferer about what i am learning, and what I am considering doing. Would you ever talk to me on the phone??? 978.314.0373

By: Amy Goldfarb

Amy Goldfarb — Mon, 07 Nov 2011 16:06:18 +0000

Hi Amy,
My name is Amy too. I am sorry to say that is not all we have in common. This damn unremitting headache is so depressing.
I got it on March 18 2008 when I was at the gym on an exercise bike. It started with an aura (which I had had a few times previously, with no monstrous headaches attached) and was followed by a terrible headache. It worsened and worsened until I was in agony 24/7. I won’t go into all the specific details because they are probably similar to everyone else. At this point I have tried:
Topomax, Lexapro, beta blockers, calcium channel blockers, NSAID’s to beat the band, nerve blocks, botox, amitriptyline etc… I even went to Houston to the good doctors Perry and Blake and had Occipital Nerve Decompression surgery (Which helped, but did not cure). I have done acupuncture, cranial sacral, myofacial release, massage, chiropractics, dietary changes and I am sure I am forgetting a few things.
The weather (changing barometric pressure) is the worst thing for me. Other than that, I live with a level 3 headache (Having done natural childbirth twice I use this scale conservatively) with a bi-weekly classic migraine. I have seen Dr. Elizabeth Loder, Dr. Carolyn Bernstein, and Dr. Todd Rozen. I am hoping Dr. Rozen, who I just began seeing in July will provide some extra help. My current drug regimine is: Flunarizine (cc blocker not available in the US), Salsalate, Wellbutrin, botox every 2 months.

I also am the mother of two beautiful daughters, and after taking one year off work, I have been back about a year and a half. I am able to do much less than before. I have very little energy, and feel like I live with Morning sickness or altitude sickness…not so much the nausea but the full systemic response to SOMETHING BEING WRONG.
I am both discouraged and trying so hard to stay positive. Your website helps. thanks. Amy

By: refractoryme

refractoryme — Sun, 16 Oct 2011 04:10:57 +0000

A new daily persistent headach blog for your blogroll.
http://refractoryme.wordpress.com/

By: thunderlovenlightning

thunderlovenlightning — Tue, 19 Jul 2011 08:59:59 +0000

Just stumbled on this doing some research. 2nd of August 2009 was when it all began. I turn 18 on Sunday (24th of July) and my headache’s 2 year anniversary is not long after. I’ve been told it’s all in my head, depression, stress, anxiety. Because i generally do well at school easily (only way im kind of keeping up, with 40% attendance in my final year) i was told i was stressed and i should put less pressure on myself. Neurologist sent me to a psych, who i only saw to prove the neurologist wrong. The psych promptly told me it was not stress or anxiety or depression and that all things considering i was extremely mentally healthy, almost abnormally so. Neurologist still insists that it is stress and will stop as soon as i finish year 12. I have seen nearly 15 doctors/medical professionals (multiple GPs, paeditrician, paediatric neurologist, osteopath, physio/acupuncturist, psychologist, hypnotherapist and a whole lot more) been on countless medications and have not had a diagnosis. I do not think that NDPH is much known in Australia.
On Friday my parents are dragging me back to the second (read: 10th) opinion doctor, and Mum’s pushing for an MRI. I’ve had a CT and my normal GP thinks that an MRI is not suitable. He has recently told me that he thinks it is something that the medical world simply doesn’t understand yet. It was a relief to have him say that he believes me, after being told so many times I’m making it up, or that i can’t possibly be telling the truth. It’s such an impossible thing to fathom. My parents don’t accept this answer and at the moment I am just so so tired of chasing for an answer, being poked and prodded, having to explain, and not being understood.
I had a small amount of success with Topamax, until it both stopped working and made my lose nearly 15%of my bodyweight, when i never really had any to spare.
It has flared up very badly in the past few months, and after a slightly better period of nearly 4 weeks it’s back at full throttle.
If you have any questions, let me know.

By: Angela

Angela — Sat, 14 May 2011 19:40:16 +0000

Oh, how sweet it is to be vindicated! Thank you Amy and I thank all of you, for your posts. I have not been diagnosed with NDPH rather just found out about it today after researching, yet again, unusual causes for SEVERE, CHRONIC, Headaches! My first one hit when I was 26 and lasted for 3 months. My second one came a few years later and lasted for 2 years, this last one hit over 7 years ago and it is still here. I am now almost 44, on depression medicine, anxiety pills and have had numerous tests and treatments done. The verve blocks made it worse, the botox did nothing…etc. I don’t know if I could be suffering from NDPH or something else, but it is so nice to prove to myself that I AM NOT CRAZY! The headache is not just “in my head”, which is the way other people (have seriously, no lie) worded it. The pain gets me so down sometimes, but it is worse when I feel that other people are judging me because of it. I am me. I am not a headache. Unfortunately, just like others, I even sometimes confuse the two. I have to stay strong and be thankful it is not cancer, it is not terminal. I need to remind myself often to count my blessings. But after suffering so long with this amount of pain and knowing that some doctors and even past friends have given up on me, it gets difficult. Please Amy, write that book!