ALS and Headaches

[LittleKnight]

I was diagnosed with ALS about two months ago, and I'm suffering from some of the typical early symptoms: muscle fasciculations, stiff hands, speech impairment, and difficulty in swallowing food and liquid. Despite everything, I've been ambulatory and I felt that I might still have some time to enjoy life. But in the last eight days, I have begun to suffer from a severe headache. Not headaches plural, but a single, unbroken period of pain in the right side of my head. The center of the pain migrates from behind the right ear, to to the right temple, to the back of the neck behind the right ear, and to the top right side of the crown.
This started last Saturday and has not gone away: the persistence is driving me crazy, and making my other symptoms seem minor. My neurologist said my neck and brain MRIs (from two months ago) showed no abnormalities, and so she prescribed Indomethacin, but it had no effect. On Friday my ENT changed that prescription to Prednisone and Naproxen, and that greatly reduces the pain, but only for while: the pain comes back in the evening, about eight to ten hours after my dose.
Everyone tells me that headaches are not a symptom of ALS, and I fully understand that I could be having some condition totally unrelated to it. But I wonder if anyone else has ever experienced this? I'm fearful that I may be having muscle fasciculations under the skull, if there is such a thing-? Any thoughts you can share would be greatly appreciated.

 

[Nikki J]

Hi welcome and sorry you are here. The ALS things that spring to mind are musculoskeletal if you have neck weakness which could certainly be one sided and , less likely, given the one sidedness respiratory issues. Headaches are common with that but I do not think usually one sided. However you should insist that when they check breathing it both sitting up AND lying down. Those numbers can be very different.
Otherwise and unrelated you mention swallowing issues. Consider talking to your neuro about nuedexta. Some PALS have found it helps swallowing. It is not what it is approved for. It is for emotional lability (inappropriate/excessive laughing and crying)
That is what you would need to report to get it prescribed and paid for

Hope you get the headaches under control!

 

[Barbie]

You are under a lot of stress with the new diagnosis...that could also be related. how about getting a massage and try some meditation?

 

[LittleKnight]

Thank you for your replies. Mercifully, the headache seems to have lessened today – finally! I'm told that Prednisone builds up in the system the longer you're on it, so maybe I'm getting a cumulative effect after three days. Still, that side of my head remains tender to the touch and susceptible to twinges of pain when I move. Hopefully it will continue to improve.
I don't think it has anything to do with breathing. The doctors haven't noted any problems there and I don't feel any difficulties, yet. I 've noticed small fasciculations in my neck and I still wonder if they have been causing the head pain. I have to admit, I'm totally scared it will return after I finish my 1-week dosage of Prednisone. I'll be visiting a clinic on Wednesday, and I'll ask them; I'll leave word here about what they say.
For the time being though, I'm going to go with the notion that it's all tension-related. I'm going to try my best to relax - massages aren't helpful at the moment, much to my wife's disappointment, but meditation and prayer are always very good Hopefully the pain will keep diminishing until it's gone. Thank you for the calming words.

 

[Atsugi]

All my tension goes to my neck and head. I've had to wear a neck brace and take narcotics when I had major projects up against deadline.

 

[zoohouse]

Tim's PT is trained in acupuncture and does it on his neck once a week along with massage, and heat packs. He also has a massage therapist come in once a week to work on his neck, and that seems to keep things down quite a bit. He takes a muscle relaxant at bedtime as well.

Paulette

 

[gooseberry]

It sounds like migraine to me.

 

[MaxEidswick]

>Everyone tells me that headaches are not a symptom of ALS, and

me 2

see what pcp says ....

 

[gooseberry]

Migraines can be vaso constricting or vasodilation in cause, change in neurotransmitters or inflammation levels, stress, fatigue, etc can all bring them on. New meds,loud noise, bright lights, the list is endless. They are brutal. Never had one until I was 33. They have been an ugly side kick since. Talk to your neuro...call them if you won't see them soon.

 

[affected]

LittleKnight have you been to see your doctor and had this checked out?

 

[LittleKnight]

Finally getting back to this now, because I've been completely flattened by these headaches: tomorrow night will make two weeks straight of pain. I went to a neurologist; then an ENT; and finally this week I went to my first good ALS clinic. Not only did they give me a deeply encouraging orientation, they also correctly diagnosed my problem. It's shingles.
That's a virus, and if you never heard heard of it before (like I didn't), the key thing to know is: it's INSANELY PAINFUL. The other thing is, it has little treatment available, and no cure. (I'm getting pretty sick of that kind of report, you know?)

Basically it's an adult recurrence of chickenpox. It can last four to eight weeks, or more. It brings swelling, *massive* pain and eventually a bad rash of blisters (those are the actual "shingles"). They say it's actually very common in older people (50+), although they don't know why it just one day turns from dormant old chickenpox into active killer shingles. The most common idea is that the reactivation is brought on by acute stress, physical and mental. I think the people at my clinic recognized it because quite a few PALS, like me, get it post-diagnosis. I hope no one else gets this

 

[ShiftKicker]

This is very interesting, though terrible for you!
I have had two outbreaks of shingles (or, as I call it "ear herpes") on my ear and eye (basically the length of my trigimenic nerve) in the last two months. Though I did not experience the same kind of pain as you, it was deeply irritating and worrisome. Shingles viruses are not eradicable, but you can definitely reduce the severity and length of outbreaks by taking antivirals like Zovirax. The virus lives in your nerves, and, at times of stress and strain on your immune system, will inflame your nerves and cause the pain and blistering. Seeing as how your nerves and immune system are already seriously compromised by ALS, it makes sense you'd get an outbreak if you have the virus camped out in your nervous system.
Shortly after my first outbreak on my ear (which I'd never had before, just the usual cold sores) is when my neuro noticed changes in my jaw reflex and other mild bulbar symptoms. I feel there is a correlation.
If your doctor has not already given you a prescription for something like Zovirax, I recommend you ask. It really does reduce the severity of the symptoms.
Take care

 

[LittleKnight]

Hi Shifty, I was given Valtrex (an antiviral) today, but it's awfully late in the game (two weeks in!) to start that. Still, it *might* help some, so I'm going to use it. I also got Gabaprentin which is supposed to lessen the neurological complications that can arise, so ditto for using that. It's only about six hours after my first doses and I'm actually starting to feel a fair bit better. Thanks for the good wishes: hopefully I'll perk up in the coming days and get over this, so I can concentrate on the ALS (yay?).
Moral of the story, readers: if you start to have a persistent headache and suddenly develop a blister or two in the same area: ask your doctor about shingles immediately. If you begin using antivirals early, they're way more helpful.

 

[lgelb]

Also, a non-commercial message that the shingles vaccine is available at docs and drug stores, including to PALS (very small needle so even thin arms can handle). Absent any contraindications, it's worth getting.