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New daily persistent headhiche. I feel alone with my pain
Hello, my name is Nathalie, I am 54 years old. I live with the new daily persistent headhich since June 24, 2010. I live in Quebec, Canada. It took several years to get the diagnosis. Digging for the cause of my headaches. I was also found to have a tumor in the pituitary gland. Which put the doctors on the wrong track. The tumor was not the cause of my headaches. I had to stop my job and I haven't worked for 12 years now. I've seen great headache specialists. I tried many medications, without success, including botox. The only thing that has helped me so far has been changing my pace of life.
Fortunately, I have disability insurance which allowed me to stop working. I walk regularly, I avoid sulphites, MSG and processed products. I try to avoid stressful situations and I set limits. But every day since 12 years the headaches are there. They increase with temperature changes and in Quebec the temperatures change every day. What did me a great good is to read by this blog that I am not alone. Yes there is not much research. Yes I have the impression that the pharmaceutical companies are ignoring us, but reading you, even if I don't know you, I feel understood. I am no longer alone with my pain and without medication to relieve it. Thank you for reading me and sorry for my English which is quite average.
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Sorry to hear your plight. I can understand as I have had tension headaches for 28 years now - but probably not as persistent each day as you.
A key path to take is what you are already doing - calm the mind and body. When in pain, the sympathetic nervous system dominates - the parasympathetic nervous system is slowed down. The former can trigger adrenaline and cortisol which, if sustained, are toxic to the body. The parasympathetic system enables digestion, calms the mind and body. And pain. If we dwell on the pain, the mind can catastrophise and thereby amplify the pain.
Mindfulness and meditation are key tools for calm. Just sitting in nature with no reminders of urban life is very calming. Equanimity is vital as is acceptance - they are linked - we accept and observe the pain and not buy into any narratives the mind might want to add to the pain as explainer. Often these are false narratives.
I can awaken in the small hours at night and have the terrifying feeling of a panic attack. For hours. Dying can feel like a most welcome relief. I observe and relax - as much as the pain permits. Invariable, when I finally awaken in the morning, I feel to have slept well. There seems to be no residual effect of the attack.
A super important factor here is that the body tends to manifest the mind's perception of how life is. So if we relax and do not create a feeling that we are deeply struggling with pain AND that we create a feeling that the pain will pass and we are therefor on top of things, pain can calm down.
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4 ReactionsNo you are not alone. I have had this NDPH for 3 years every day/all day. I just had my 5th spinal blood patch and going for another. Nothing helps and I have tried everything. I treat at Jefferson Headache Center in Philadelphia, PA. And now, dizziness is added to the mix. I feel your pain and I pray for all.
Mikayla
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3 ReactionsThank you! It is exactly the path that I follow. Mindfullness help me. Like you, relaxing life and knowing that I am not a headhiche. I am me and life can be wonderfull. Again thank you! It is so good to read .
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1 ReactionThank you Mikayla, keep positive and if praying can help it is like méditation. In my case when I have dizziness is because I am doing to much or because my headhiches are strongers for few days. So I know to take less in my agenda. I am with you to.
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1 ReactionThanks - you are kind!
All the best!
I have at last found a place where the bird feeder under my garden tree is now used by streams of little birds. Sitting watching them is a relaxing way to allow time to drift and ourselves to calm.
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1 ReactionUnfortunately, I need to by laying down. This is making me weak and out of shape. Boy are we a mess.
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4 ReactionsHello Nathalie. I just wanted to let you know that there is a New Daily Persistent Headache private group on Facebook that you may want to join if you use Facebook. It might be helpful to you.
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3 ReactionsThe best way! Thank you to be there. Reading your story I see that you have done a lot of research on the subject. I read your text twince and I took notes.
Nathalie
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1 ReactionThank you , I will look for it.
Ho la la! Yes we are a mess. Dizziness is not for always fortunately . One time I had dizziness that was, that time different and it was Vertigo. Take care. Nathalie