Hi everyone,

Yesterday i had a headache that was so bad i almost blew chunks. My whole head and neck hurt on the left side of my face, eye, and the pain even traveled down my left shoulder and my left arm as well. Even my left leg and foot were in pain. This is not the first time this has happened, when it does it seems like the whole left side of my body is one big aching nerve. I do have full body RSD, but it seems when i get a flare up, it's usually on one side of my body that's affected! My meds don't seem to help much either when the monster hits like this!
I was wondering if anyone else has experienced this kind of pain, and if you have any suggestions please let me know?

Thanks,

jmac50

Great question...
I get headaches just like that... I even get fuzzy/numb skin feeling in my face/neck and my eye will twitch and droop. It effects my whole left side which is where my RSD is located. Last week though, it happened on my right side (weird). Doc said he thinks it is just a reaction to stress. I take migrane meds (Imitrex) when I feel it coming on but the last two times it didn't even touch it. I put ice packs on my head and eyes and stay in dark cold room and it seems to ease it up some. Any ideas out there?

Methadone has been the only med so far that really helped diminish my head pain. I started taking 5mg 3x a day 2 weeks ago and it has made a significant difference in my pain levels and my quality of life.

I also take Topamax and Percocet, both of which were prescribed a while ago. But they stopped working for my severe headaches when my RSD spread during the winter.

Can you determine what the cause of the head pain is and try to eliminate it? For instance, my head pain flairs whenever I do something strenuous with my arms. Or if I am forced to listen to loud noises for too long. I've stopped using my arms to rake or vacuum or pick up anything too heavy (I TRY to make my kids do it instead).

Many of us can feel bad weather coming, my head pounds during bad storms. I take more percocet when I have to, sometimes that helps. And sometimes it just helps to walk a lot. It takes my mind off the pain and helps loosen up my muscles.

I hope you get some help soon, I suffered from unresolved head pain for a while and it was really awful. Sandy

Can you folks get to a good headache clinic? If not, a Neurologist that specializes.

I suffered with migraine and headache almost all my life, and of course these injuries just put them over the top.
Get a book on the subject.
Read up on "HA Triggers", foods, drinks, lights, tension, soon, you'll learn your own triggers.
(For me, nitrates in hot dogs and cheeses, aged cheese, meats, red wines, any wine, beer, and even some "scents" can set you off). A good HA book is priceless! Check the library or Amazon.

Prevention is the best!

On that order, some meds are used to prevent migraine.
Usually the anti epileptic or seizure meds. Topomax, Zonegran, like that. Your doctor has to help you.

The migraine meds, are trial and error too, Imetrex being the "big boy", but, if you're nauseated, the med is going nowhere, so they now have different delivery systems.
Melt on tongue, nasal spray, injections. It does no good sitting in your stomach, or worse, vomited out.

Ice packs are great, you can buy ones that stay flexible, keep them in the freezer, a good medical supply will have them, so does Amazon.

A "killer" HA event will pull so many muscles tight in your body, that it becomes a major "RSD ATTACK". Your pain will flare everywhere, places you didn't know you have. Migraine is different than an "occipital" HA, and I find methadone does no good for Migraine. (Occipital yea). Occipital refers to the occiputal muscles in the neck, and are sometimes called tension headaches, because those muscles, "tense." There are quite a few different kind of headaches, classic migraine is nausea, sensitivity to light and smell,
and a throbbing pain, sometimes on one side of the head. There are "Vascular" HA, also. This is where a good HA clinic or neurologists comes in.
Identifying the type, first.

I have, (and you may too) have more than one type, but for me, the others "trigger" the Migraine or Cluster. I think the migraine or cluster is the worst.
They can last for weeks, or longer.

Talk to your doctor!


I hope this helps somewhat...
I feel your pain, every week!


Pete
Asb

I have migraines too. They started from puberty, and my mom also had them. When she hit menopauze (in her early forties) they stopped. Thank God I haven't had a migraine in quite a while now, they seemed to have lessened. I am going to be 37 this year, so maybe age is a factor, I don't know.

When I do get one (and this I have had to learn with time), taking 800mg Ibuprofen *very* early on mostly helps. I take it as soon as I see the aura (I have warning signs, visual disturbances). If it's not early enough, I will start to vomit and I have to suffer through it. The vomiting, the pain and sick flu-like feeling is absolutely awful. Sometimes my left eye (it's always the left one) hurts like hell, this is when I have a very heavy attack. If that happens, I can't move the eye even a small bit or it feels like an icepick is shoved through the socket all the way to the middle/back of my head.

I am sorry that each of you have these horrible HA. I have only had 5 in my 50 yrs. Dark room, and complete silence is the only measures that got me through. My grandmother called them "puking" HA. I did feel nausea, and also had vertigo.

When my muscles spasm, the chill is penetrating my bones, and I feel as if my body will fold in on me, I take a hot Epsom salt bath, with scented candles,and meditation music playing. While in AZ, we purchased 3 CDs that are flute/natural sounds/Native American music. It relaxes me, and Epsom salt also gets rid of toxins in the body. I feel like a new woman..human again..once out of the bath.

Hi Jmac,

I also get really bad headaches and migraines that can travel down into my shoulders. I never had headaches before RSD but now I seem to get them all the time.

I mentioned it to my Pain Management Doctor once and he said that it was probably a tension headache or migraine from the pain. I seem to be really tense when I am in a lot of pain and that is why my doctor thinks it could be a tension headache.

I haven't really found anything that helps with the headaches. My PM Doctor told me to lay in a dark room and it helps a little.

If you are on any medications, it might be worth looking at the side effects. I know lots of meds have migraines and headaches as side effects.

Sorry that I can't help you that much. Just know that you aren't alone and that I understand what you are going through!!

I hope you feel better soon!

Alison.

I have developed migraines/face pain/ear and eye pain. I feel mine may be from my eye condition but have had so many tests like mris and since the 2 pain docs I saw who deal with rsd said that it can't be in my eyes I have no idea. Especially since I know people with it in their eyes. Anyhow you said your meds don't help but maybe you need to try a new one specific for the head pain if it continues. Feel better

Hijmac50, So sorry about your terrible headache. I've had bad headaches for the past 30 years. A particular bad headache I learned from my Neuro Doc is called Trigeminal Neralgia. The Trigeminal Nerve is at the temple on both sides of your head. It usually just hits one side of head at a time. Three nerves come together at that temple area. It's a piercing pain, like an icepick is being drivin in your temple. The pain, for me goes down one side of my face, There is a Trigeminal Nerve site here on this forum, just scroll to the t's. This may not be your case, but I know it's one the worst ha pains like migraines. Ii've got to migraine support group meetings and that was helpful, just knowing some of the triggers for them and learning what they are for you as an individual. The only thing for the TN headache is a surgical procedure that I personally would never risk. I met someone on the other forum that had the surgery and his life was never the same, kinda like rsd is for us. I personally like a heating pad, dark room, quiet house, warm bath,epson salt, meds. Hope the best for you. Take care, loretta