Headache?

[Snow Leopard]

I'm just wondering how many of you suffer from a persistent headache?

By this I mean a persistent headache that never goes away, at the top of the head. Also not to be confused with headache due to neck pain, sinus pain/infection etc.

I've had one for as long as I have been ill and I have forgotten what it is like to be free of pain.

Sadly, painkillers like Paracetamol, Ibuprofen have no effect, Asprin has some effect but the headache remains (so not worth taking every day).

 

[L'engle]

I've usually had a headache at some point in the day or for a large part of the day, the whole 16 years. It goes away more if I rest and comes back more when I do things. (I haven't found any better way of managing it than that so far.)

Edit: Actually I think magnesium helped but it was hard to get a good form with no side effects. No other supplement I've tried helps so I don't take any. Fish oil gives me a headache and insomnia.

 

[PatJ]

This thread may be helpful. Several suggestions are made including the use of fish oil which Valentijn has found to be very useful.

 

[jstefl]

I suffered from horrific headaches on a continuous basis for many years until I started Valcyte. That was in 2008, and I still have a continuous headache, but it is really mild compared to the previous headaches. Tylenol works pretty well now. My really bad headaches started to subside within a week or two after I started the Valcyte.

I have been taking resistant starch for two years now, and I am almost off of the Tylenol. The RS has allowed me to cut back on the Tylenol to the point where I am usually able to get by with just taking it in the morning.

John

 

[Oci]

I have been taking resistant starch for two years now, and I am almost off of the Tylenol. The RS has allowed me to cut back on the Tylenol to the point where I am usually able to get by with just taking it in the morning.
John

Very interesting, John. I will try resistant starch too as it will no doubt improve my gut microbiology. Actually my headache pain is one sided and involves the neck and extends down into shoulder too. I have had a lot of migraines but this may be something structural rather than neurological. It is not feeling like migraine. I'm working on finding the root cause.

I am wondering if anyone as figured out what snps might be involved, what deficiencies in vitamins & minerals, etc. might relieve very tight muscles in this area.

I am glad that you are getting off Tylenol as it is not a benign substance. I believe it also lowers glutathione which we need.

I do take fish oils and lots of magnesium.

 

[jstefl]

Another problem I had was the muscles in my neck getting all tight and knotted up. I finally figured out that this was being caused by my computer use. I went to a neurologist that prescribed massage therapy, which helped some times, and made it worse others. I finally found a pain doctor that injected the muscles with a mixture that included Botox. That worked like magic!

I learned my lesson, and began to use the computer differently from then on. I bought a huge 32" monitor, and moved my chair back so that I wasn't bending my neck to look at t6he screen.

Looking back, I feel a bit retarded. I don't know why it took me so long to figure it out, but life is much better without having my neck muscles all knotted up.

John

 

[Oci]

Another problem I had was the muscles in my neck getting all tight and knotted up. I finally figured out that this was being caused by my computer use. I went to a neurologist that prescribed massage therapy, which helped some times, and made it worse others. I finally found a pain doctor that injected the muscles with a mixture that included Botox. That worked like magic!

I learned my lesson, and began to use the computer differently from then on. I bought a huge 32" monitor, and moved my chair back so that I wasn't bending my neck to look at t6he screen.

Looking back, I feel a bit retarded. I don't know why it took me so long to figure it out, but life is much better without having my neck muscles all knotted up.

John

Many thanks, John. That may very well be a big part of the problem! I have supposedly improved the ergonomics by elevating the laptop and getting a separate keyboard and tracking pad but in fact I often still am craning my neck to see.
Interesting about the Botox. I have had physio and massage and it helps at times.
I still wonder if I am not missing some nutrient however.

 

[SDSue]

I’ve had a bad headache since I got sick. Every day. All day. It’s really getting me down lately. When I do anything, I often end up laying for hours on my bathroom floor, crying because my head hurts so bad and is accompanied by nausea, vomiting, and awful dizziness. At those times, I take Valium, Zofran, Meclizine, and hope for sleep.

I’ve fought so hard for so many years, and I’m tired. I never reported my pain as I didn’t want to be labeled a drug seeker, but screw that. I can’t deal with this anymore.

I’m trying to get a medical marijuana card, am going let the neuro shoot me up with Botox, and recently had an occipital nerve block. I decided there’s no reason for me to gut it out and act brave anymore.

 

[jstefl]

My neck problems started when I was using my computer while sitting in a chair. I wear multifocal lens glasses, and had to tilt my head back to see my little 14" monitor. Things got to the point where I could barely move my head. I could just look straight ahead. The physical therapist I went to helped after some sessions, but made things worse after others. It is possible that the PT guy could have helped me eventually, but I had many sessions without much improvement. I was going to a chiropractor at the same time, and he couldn't help me either, but he suggested a doctor friend of his. This doctor had very long hair and a pony tail, and had spent years working in South America.

During my first visit he told me what he wanted to do, but I wasn't ready for that. I finally felt that I had nothing to lose, and let him do one side. The relief was almost instantaneous! I went back as soon as I could get in and had him do the other side. I have no idea of what he injected me with. I know Botox was one of the ingredients, but I watched him mix at least six or seven other ingredients in.

I now sit in an office chair with my feet up on the desk, and the monitor at least 48" from my eyes. That way, I can put my head back, and not strain my head muscles. I can freely move my head in any direction, and haven't had any reoccurrence of the muscle cramps.

I haven't taken any pain killers yet today. Before I started the Valcyte, I had headaches that ranged from severe to almost unbearable. At times, I could take two Vicodin's and still be in great pain. As I said, the pain began subsiding within a few days of starting Valcyte. I took the Valcyte for 10 months back in 2008. Looking back, I wish that I had taken it for much longer, but back then, who knew?

I am really interested in taking a low dose Valcyte. I don't feel that I need the full dose any longer, but am really wondering if maintaining a certain level of Valcyte in my system would be beneficial. I feel that my headaches were caused by inflammation. I went to a headache specialist at the Mayo clinic in Rochester Minnesota, and he was absolutely no help. He was really surprised that Valcyte helped. I lived through nearly 17 years of the intense headaches, so I know what it is like, and I am so relieved that those days are over with.

I know that Valcyte is not for every one, but I believe that low dose Valcyte may be an answer for those that can't tolerate the full dose.

John

 

[Otaykj]

I’ve had a bad headache since I got sick. Every day. All day. It’s really getting me down lately. When I do anything, I often end up laying for hours on my bathroom floor, crying because my head hurts so bad and is accompanied by nausea, vomiting, and awful dizziness. At those times, I take Valium, Zofran, Meclizine, and hope for sleep.

I’ve fought so hard for so many years, and I’m tired. I never reported my pain as I didn’t want to be labeled a drug seeker, but screw that. I can’t deal with this anymore.

I’m trying to get a medical marijuana card, am going let the neuro shoot me up with Botox, and recently had an occipital nerve block. I decided there’s no reason for me to gut it out and act brave anymore.

I have an occipital nerve block scheduled for next Thursday. I'm like you I just can't stand the pain anymore. I'm trying not to put a time limit on how much longer I will deal with this pain. I started Butrans patch today. As long as this headache and neck ache continue at this pace I don't think the Butrans patch is going to help a whole hell of a lot so I'm counting on it a lot. So, tell me, how did the nerve block work for you?