4 year anniversary.

So the day has come around again. 4 years ago to this day I developed a severe headache which never left. Who knew people could suffer from never ending headaches, I never knew New Daily Persistent Headache existed until I got hit with it 4 years ago. But the condition effects hundreds of people worldwide, yet has very little research, or funding for research, and very little treatment. There is no set treatment for NDPH, you just have to dip in and out of medications used for other conditions in hope that they will help. But NDPH is the most resistant form of headache condition to treat. It often doesn’t react to the medications which are trying to help but most of the time don’t. In my case I have tried all the available medications none of which made an impact. I’ve tried more aggressive forms of treatment, nerve blocks, botox, DHE; no impact on the pain. I’ve tried alternative treatments, acupuncture, osteopathy, massage, acupressure, hypnosis and rekei; and none of these had any impact on the pain either. I’ve now got to the point where I have tried absolutely everything there is to offer for this condition and there is nothing more my neurologist can do to help me. I’m on the waiting/funding list for occipital nerve stimulation surgery, though due to funding issues with the NHS this surgery is under decision about whether or not it’s going to be funded by the NHS at all. If it is the wait is going to be about 2 years before it’s done, if it’s not well then there really is no hope at all. 

It’s been 4 years, which if you think about it is a long time to be in pain for with no relief. Over 4 years ago now I was a normal happy care free teenager, now I’m in pain, depressed, miserable and have had most of my teenage years taken away from me that I will never get back. I’m feeling very miserable today because of it’s anniversary, the day just reinforces everything bad, reinforces that I’m helpless, that I feel alone, that I don’t have much of a future to look forward to as all it is going to consist of is more pain and the misery that comes with the pain. It’s been 4 years and there is nothing stopping the pain from continuing on another 4 years, 10 years…forever. I struggle to see the point in doing anything, because seriously what’s the point in anything if all I’m going to be is in pain all the time. I’ve been suffering with no relief for 4 years now and I don’t know how much longer I can cope with the pain. I’m fighting it and fighting it but the pain is always there and I’m tired of fighting, I’m exhausted from being in pain all the time. I just don’t want to have to do it anymore. And I don’t understand why this happened; what did I do to deserve all this pain?! 

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7 thoughts on “4 year anniversary.

  1. Please know that many prayers go out for you. My 16 year old daughter has her 5th anniversary Feb 3rd. Her HA started in 5 grade. Like all sufferers of NDPH we have tried it all. The only treatment that has offered her relief is neuro feedback. It does not relieve the constant HA but gives her coping skills and has trained the brain not to concentrate and focus on the pain. She gets treatment 2x week and when we take a break for holiday she feels a big difference so it works. Please see if there is neuro feedback available to you. She was at her breaking point too before we started this treatment that was suggested by our headache neurologist who specializes in functional medicine. Also, diet plays a factor too. Limit or cut out gluten and dairy. Avoid processed foods and nitrates. Drink from glass not plastic. Try not to use microwave for cooking. Try to eat organic. This has helped tremendously. You can do this.

  2. I’ve had chronic migraines most of my life. My only suggestion is to be careful you are not taking too much or many pain meds because they can result in rebound headaches. I have also found that icing my head, if the headache is on one side, helps. 20-25 minutes on and 20-25 minutes off. If you leave the ice on too long without the “rest” period I was told it will have the opposite effect from what you want. You can buy reusable jel-filled compresses. I keep two in my freezer. Good luck.

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