Evening headaches

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blitzc

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Help needed to figure out these painful headaches that have been sucking the life out of me almost (but not every) evening for the past 6 months or more. I used to have severe shoulder, neck pain at the end of the work day when I still worked due to supporting my head and all the daily activity that took energy from my arms, back, breathing, etc. But they mostly subsided when I quit working and got our move completed. The headache though seems to start in my front and moves all around to the back and into my neck but stops at shoulders. My whole head hurts, mimics a severe sinus or migraine. I feel like my brain is throbbing inside my skull. It often is so severe I can't talk, read, move. The interesting thing making me think ALS related is I never wake with it or have it during the day - starts about 7-8 pm. I give in to bedtime at 10.

I checked my pulse O2-always 96-98. I take blood pressure meds in the am (metoprolol and amylodipine) along with Riluzole. Riluzole again in the evening after dinner. Trilogy usage in bed from 10-7 am.

So a problem to discuss with PCP or Neuro? Dehydration? O2? CO2? Neck strain? ???
 

Nikki J

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Although I usually think respiratory / CO2 with ALS headaches it sounds like neck strain is most likely due to timing. Are you limiting fluids in the late afternoon? If so dehydration would be a second guess.

i would ask my neuro first. In the meantime look at better neck support. Do you use tilt during the day?
 

blitzc

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Nikki, I do start to slow my liquid intake about the same time and really slow it down by 9 in order to make it through the night.

I have a lift chair with good head support and a neck support roll that I have tried to use. ( husband's idea to help) I think it helps sometimes. The more I rest my head back into the chair the more the pressure hurts. But it always helps my neck. (Hope that makes sense)
 

Nikki J

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I think you need the support all day if this is the issue. By the time it hurts it is too late. You may need a collar

if you are well hydrated during the day and just beginning to limit fluids at onset of headache you wouldn’t be instantly dehydrated. However maybe you are running dry anyway?
 

blitzc

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That makes sense..."by the time it hurts it is too late". So perhaps a decent neck support.

I try to drink lots during the day since I have help here from 10-2 and then another check in at 4 for toileting. But I am sure it is not as much as I could use, knowing every toilet break sucks up energy.
 

lgelb

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This is metoprolol succinate, yes? Sometimes the pharmacy screws up and you could get a 12h version (metoprolol tartrate).

After checking the drug name, I would start taking the beta blocker at night. Headaches can result from hypotension and usually evening is the best time for a 24h beta blocker anyway.

Your reduced activity level, changes in diet, etc. can easily change how the BP meds are metabolized and by taking them both in the am you are making the evening a potential nadir for BP (which might be a perfect storm with dehydration as well, as Nikki points out). I would also start checking BP, either way, though depending on your body composition, the home monitor cuff may not be super accurate. Some people require a dosing adjustment.

Definitely, try a medium density foam collar or if a collar is too much in the chair, little travel pillows, not rolled up. The thicker/firmer something is, the more pressure it puts on your neck.
 

blitzc

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Laurie, what is meant by "potential nadir in BP"?
Thanks for the information on BP meds and foam collar.

Thank you as well, Nikki! Experts with more experience than I have are needed as this journey continues through new twists and turns.
 

lgelb

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The lowest point that your BP would be in a 24-hour period, which could cause headaches if it's lower than you have been before or your body wants to be, esp. if you're limiting fluids that would normally help you metabolize the meds and of course are less mobile so you need less BP.
 

KarenNWendyn

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To see if there is a nadir in your blood pressure, it is easy enough to check your pressure a few times a day including when you get the headaches. Ideally there should be only slight variation, or at least time the dosing so that the nadir occurs during the night when you’re sleeping.

I think it’s more likely your headaches are related to muscle tension. See if massage over the back of the head or neck reproduces the pain or if you have any trigger points —radiation of pain from pressure over a particular area. Besides the use of neck support, massage and various physical therapy maneuvers can help.

A less likely cause would be variation in blood sugar levels. This would be more likely in diabetics.
 

KimT

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Cathy, When my muscles at the base of my skull get tired, mainly from computer work or being in the pool too long, I get headaches and a fullness in my head feeling that's hard to describe. It's like my head is going to explode. I've even had dizziness from it. I had this prior to ALS and a specialist said it could be vertigo caused by a prior neck injury or even just tension headaches causing the other symptoms. I had to lie flat on my back and let someone put their fingers up into the suboccipital muscles while I relaxed. That always made it a little better. Unfortunately, it usually wasn't enough so I turned to a muscle relaxant to help.
 

blitzc

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Kim, your description is exactly as I experience. So perhaps I need to respond with neck and muscle support and elaxation. I tried using the neck pillow I have yesterday when it started, and I did get some relief after a period of time.
Thank you!
 

blitzc

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Karen, we have a blood pressure cuff here that I plan to start getting periodic readings and see if any patterens arise.
 
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