Comments on: Tell Your Story

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!

By: John Oshel

John Oshel — Wed, 29 Dec 2010 08:05:03 +0000

Hi Hannah, my name is John. I live in Mankato, MN. I am 33 years old and I have had constant moderate to severe pain 24/7 for 23 years. I was diagnosed by the Mayo clinic back in 1988 (before NDPH was mainstream). I went to MHNI in Anne Arbor Michigian under Dr. Saper in 1998. I was in- patient for a month in Chelsea hospital. You have chosen one of, if not, the best places and the first thing theyprobably did was to wean you off of narcotics and stop all otc pills immediately and then educate you about rebound headaches. Dr. Saper discovered that connection years ago. It’s important for you to follow their advice because constantly increasing the level of your pain by overusing otc drugs will complicate the pain process and could make things worse down the road. Also, taking narcotic meds is a very bad idea because over time it actually increases your sensitivity to pain making it worse. It’s not the decreasing narcotic effect of the drug that I’m talking about but an actual change in brain chemistry caused by the narcotics.
I can give you some tips on dealing with people. First, talking about the pain a lot is counter productive and very hard on yourself and your family. The idea is not to get people to completely understand…that is impossible and unrealistic. But you should be able to get validation that they are attempting to understand your situation and feelings. The best thing you can do is educate them. It works best to verbalize your pain and feelings, in an articulate and assertive manner. If someone “blows you off” understand that is normal and natural for most people not to comprehend severe, literally constant, pain. People are typically stuck in their own subjective reality and they project their life experiences onto others….since they are not in pain all the time, it becomes almost impossible for them to comprehend or remember that you are, especially when you are up and about and going to class or otherwise behaving normally.
Think of a way to verbalize your feelings and state it to the appropriate people at the appropriate time and do it in a clear, direct and confident manner. I highly recommend keeping in touch with MHNI after your visit and using the doctors (in your area) that they recommend.
BTW, Mayo clinic and MHNI believe my head pain was caused by accumulated head trauma. I never had any mental impairment beyond a mild concussion and whiplash but the brain is fragile and it’s enough to cause NDPH. There were several people with similar stories at MHNI as well as two people who got the pain after giving blood.
Good luck.

By: Rachel

Rachel — Wed, 22 Sep 2010 00:27:52 +0000

No side effects so far,I’m a little scared that I might gain weight on it,at the moment I’m on 5mg and I’m working my way up to 10mg every evening,Its hard to judge if its working yet because my headaches seem to cycle so much.I’ve just had a bad week but I think I’m coming out of that today,and we”ll see if the headaches come back in a week or 2 on the zyprexa,I’ll keep you updated!!

By: Amy

Amy — Tue, 21 Sep 2010 21:22:01 +0000

I haven’t tried it – please let me know how it works for you. Any negative side effects so far?

By: Amy

Amy — Tue, 21 Sep 2010 21:20:42 +0000

Hi Hannah,
I’m so sorry that you are going through this. It’s true that no one understands unless they’ve experienced it. Eventually, hopefully, you’l be able to let it go when people say insensitive things to you about it. (Though I’m still working on it! ).
This whole thing really will make you stronger. It’s amazing how much a person can learn to tolerate.
It’s still difficult to work and focus, but as the years go by for me, I get better and better at working though it.
Keep taking things one day at a time. In the beginning, I think it’s the only way to get through it.
Let us know how things go at the Headache Clinic. If you have any questions, please don’t hesitate to ask or email me.
Amy