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New daily persistent headhiche. I feel alone with my pain

Posted by nathalietremblay @nathalietremblay, Jul 8, 2022

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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littlebee | @littlebee | Sep 11, 2023
In reply to @mikaylar "Unfortunately, I need to by laying down. This is making me weak and out of shape...." + (show)
@mikaylar

Unfortunately, I need to by laying down. This is making me weak and out of shape. Boy are we a mess.

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Ditto. Movement aggravates my (not new) NDPH, and exertion really aggravates them! It’s so discouraging.

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littlebee | @littlebee | Sep 11, 2023
In reply to @nicelymanifest "Sorry to hear your plight. I can understand as I have had tension headaches for 28..." + (show)
@nicelymanifest

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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Mine are unrelated to fear. After 40 years, they just are, and relaxation has zero effect. So far, sleep + Imitrex or Reyvow are the only things that sometimes help NDPH. If they are severe, nothing helps.

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mikaylar | @mikaylar | Sep 11, 2023
In reply to @mikaylar "Unfortunately, I need to by laying down. This is making me weak and out of shape...." + (show)
@mikaylar

Unfortunately, I need to by laying down. This is making me weak and out of shape. Boy are we a mess.

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Yes, and my toes tingle now. No exercise makes your glucose level go up too. God help us!

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ocogram | @ocogram | Sep 12, 2023

I also have headaches every day, all day, which vary in intensity, but often are a level 7-8. Stress and too much stimulation make it harder to cope with the pain, so I live a quiet life. I have tried so many treatments and nothing helps. Others don’t fully understand the difficulty of living with these headaches.

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1 reply
mikaylar | @mikaylar | Sep 16, 2023
In reply to @ocogram "I also have headaches every day, all day, which vary in intensity, but often are a..." + (show)
@ocogram

I also have headaches every day, all day, which vary in intensity, but often are a level 7-8. Stress and too much stimulation make it harder to cope with the pain, so I live a quiet life. I have tried so many treatments and nothing helps. Others don’t fully understand the difficulty of living with these headaches.

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I hear yea!

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dlydailyhope | @dlydailyhope | Sep 17, 2023

I had headaches for many years. Would wake up with them. It was hard to get to the bottom of what was causing this and what could help. Taking ibuprofen or acetaminophen didn’t really help much. I now have less headaches but still get them when it is going to rain or it is overcast (barometric pressure seems to affect me). I was diagnosed with iron deficiency, sleep apnea, and cervical spondilytic myelopathy (had surgery on c5c6) and morning headaches and neck/shoulder pain are much less frequent. I also had my thyroid lobe removed due to a suspicious nodule which may have helped (was 2.5 cm and it was affecting my swallowing and speaking so not sure if it was pressing on anything affecting blood flow and causing headaches).

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jalo | @jalo | Sep 17, 2023

I had cluster migraine and migraine for 12 year almost daily. I read about high doses of magnesium for pain and it worked amazingly well. I took 2 x 500mg daily and within a week the intensity of the pain was decreasing and within a month I was having more painfree days than not. Give it a try.

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joan7 | @joan7 | Sep 17, 2023
In reply to @dlydailyhope "I had headaches for many years. Would wake up with them. It was hard to get..." + (show)
@dlydailyhope

I had headaches for many years. Would wake up with them. It was hard to get to the bottom of what was causing this and what could help. Taking ibuprofen or acetaminophen didn’t really help much. I now have less headaches but still get them when it is going to rain or it is overcast (barometric pressure seems to affect me). I was diagnosed with iron deficiency, sleep apnea, and cervical spondilytic myelopathy (had surgery on c5c6) and morning headaches and neck/shoulder pain are much less frequent. I also had my thyroid lobe removed due to a suspicious nodule which may have helped (was 2.5 cm and it was affecting my swallowing and speaking so not sure if it was pressing on anything affecting blood flow and causing headaches).

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I know barometric pressure and changes in weather also affected my headaches. Happy that your morning headaches and neck/shoulder pain are much less for you. It sound like your getting a handle on the overall situation.....that's great!

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