Headaches

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KarenNWendyn

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I’ve been waking in the mornings more and more with a dull headache. It usually improves as the day goes on. I know that can be a sign of CO2 retention, but I don’t feel short of breath and my most recent FVC was 75%. I do sleep lying flat, and it feels comfortable.

I’ve also considered the possibilities that I could be clenching my jaws or having tightness of neck muscles, or that it could even be a slight allergy to my dog who sleeps in the bedroom. My dentist didn’t see signs of tooth grinding at my last exam.

I don’t sleep that great after about 4-5 AM, so perhaps sleep deprivation is also contributing.

Just curious what people here think about the headaches, especially if they could be respiratory in origin.
 

Nikki J

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If you have not recently had your breathing tested while lying down that would be my first action. Unfortunately your numbers can be a lot different when you are flat.

You can look at measures to improve sleep. How is your pillow? My pillow needed changing possibly because I move less in my sleep. i have no neck issues that I know of. I have had surprisingly good results with magnesium topical spray for sleep ( quality and quantity)
 
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Karen I'm afraid that sounds like typical CO2 issues. As Nikki suggests having your breathing tested laying flat would be the first important thing to do.

Remember ALS breathing issues are about breathing out enough to expel CO2 effectively rather than about necessarily 'feeling short of breath' which is more an O2 thing. hugs
 

KW1234

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I had headaches every morning but they went away when I started using the AVAP. Perhaps it is time...
 

KarenNWendyn

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That’s kind of what I was afraid of. I’ll first try elevating head of bed. Then I’ll see if I can get the PFTs lying down. I suspect AVAP/ BiPAP coming soon to a bedroom near me :-(.
 

Nikki J

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They can do the svc lying in the clinic. That is all my sister did to get her bipap. You could always get the full pfts if the svc is ok to make sure.

Wish they always screened both ways. It would only take a couple of extra minutes
 

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Karen,

I made it easier on myself and ordered a professional grade field spirometer. It's called Spirodoc and has calibrated mouthpieces that are disposable. Since I'm the only one using it, I get about 10 uses out of each one. The company threw in 100 free ones when I ordered the equipment. It is hand held and very accurate. I tested it against my RT's equipment. It also has computer software and tests everything except breathing muscle strength. This is how I found out that my FVC was the same, and sometimes better, laying flat. I'm long legged and short waisted and I've always thought doing a FVC sitting up wasn't the best I could do.

I brought it to my pulmonary doctor's office and it matched his results on FVC and MVV plus all the other measurements.

I was so pleased with it I bought another piece of equipment that measures SNIP, MEP, and MIP.

The ONLY drawback from the Spirodoc is that the mouthpieces are round so if you can't get a good seal with your mouth, you'll have to hold it differently. This hasn't been an issue for me yet.

I'll never get another PFT but did decide to get ABG twice a year at my local hospital. They're quick and easy.

The reason I bought my own equipment was because I've had full PFTs at three "Centers of Excellence" and they all used different reference ranges, different heights for me (some with shoes off, some on) and different methods of testing. I decided that my relative numbers were more important than the fancy equipment they used at Johns Hopkins, Mayo, and University of Florida.

I tested the Spirodoc with two people with known COPD. Their readings were very close to what they had from their pulmonary doctors. I had my doctor write Rx for both pieces of equipment and wrote them off the same year I had major medical expenses for the van conversion and remodeling.
 

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Karen, I did not realize that I was having breathing issues at night either. My fvc was 85% and I had not noticed anything. Doctor ordered sleep study and ordered bipap immediately. She is big proponent of early breathing intervention. I had more energy right away.
 

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Karen,

Agree, respiratory compromise + pillow (synergistic) is most likely explanation. You might think about your sleeping position -- supine vs. side, and consider more of a shoulder pillow with a cutout (which will also help the PAP hose stay out of your way). And, of course, a hospital bed as a flat position can seem comfortable but exacerbate any impairment.
 

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Karen,
Here's a typical printout from the Spirodoc.
 

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KimT

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The only other thing I have to add is that I do have neck and shoulder problems and my neck does give me headaches. I went to a concert last night and the band was slightly to my left. This morning I woke up with a headache but, after using THC cream on my neck and a little ice, then heat, the headache was gone.

Getting your Trilogy now cannot hurt and may help. Using extra pillows is great but an adjustable bed won't give you the neck pain that pillows might. I've suffered for years with neck pain from a c5/c6 herniation so I could never use pillows and get restful sleep. I will try Laurie's suggestion for my shoulder because the torn rotator cuff is giving me more trouble lately. Right now I sleep on my back and on my right side. Good thing the bad shoulder is on my left side. I cannot sleep on my left side because it causes SVT and PVCs.
 

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Neck muscles pain often gives me headaches,I use mj and sometimes Tylenol

Yes Karen “ trilogy 100 coming to a bedroom near you “

Get it before ya need it not need it before ya have it. Just saying

Good luck
 

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Are you taking any meds at night for pain or spasticity? Could they be affecting your breathing?

I agree with everyone telling you to start early on the breather. Get used to it well before you seriously need it! Even if it turns out a position change or new pillow/sleeping angle will help for now, a BiPap could be on the horizon. If the headache issue is related to breathing issues while asleep, you will feel much better.

A sleep study could identify what could be contributing to your morning headaches if all else fails. My breathing is still excellent during the day- however, I apparently frequently stop breathing for concerning periods of time while asleep- there's a signal issue somewhere. I had no idea! It might be a good idea to subject yourself to one to see if there are other contributors to morning headaches if you still feel bad after all the suggested adjustments.
 

KarenNWendyn

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Than you everyone for your wonderful ideas and suggestions.
 
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