Stump BeefKnob

Last night I had the strangest thing happen to me. I work night shifts, and had finished my week up Tuesday morning. Normally I sleep a few hours when I get home so I don't waste the whole day, but because of some things I had on my mind and possibly the new Vyvanse I was put on for my ADD, I didn't feel all that tired. Ended up staying up all day and playing with my dogs and getting some stuff done around the house. So last night around 10pm I decided to go to bed, because I was feeling pretty sleepy by that time. The wife is out of town on her first clinical rotation in New Mexico, so I decided to let my pugs sleep on the bed with me. A few minutes after closing my eyes and starting to doze off, I remember "dreaming" the most horrific feeling dreams about various things. At one point in my dream I had an overwhelming sense of being smothered, and my body felt like it was seizing up. I immediately opened my eyes and my limbs had been flailing around and my body was stiff at that point. I was a little confused what had happened and thought perhaps it was a bad dream combined with a myoclonic jerk. So almost immediately after closing my eyes again, a different sort of "dream" began where I something terrible was happening. Again, my entire body seemed to tense up and arms and legs started shaking. At this point I got a little scared, so I went and got a drink of water thinking that moving around then going back to bed might stop these dreams. However, this happened several more times, some times being more intense than others. If I had to guess, I would say each one lasted only 30 seconds or so, but it is difficult to say with any certainty. Eventually I had to put my dogs in their kennels out of fear I was going to injure them in one of these episodes. All I know is I have never experienced anything like that in my life, and don't know what I should do. I am terrified though Could it be a result of just being too tired? Small seizures? Epilepsy?

I don't even know that I would wish CH on people like Bundy or the Night Stalker. On second thought, I probably would but I wouldn't feel good about doing it. (I am a huge true crime buff!) Everyone has their problems though, and it just so happens that we got stuck with this one. It isn't fair, but it is what it is. Luckily, work is being done to eliminate these bastards. Hopefully everything you need to know in order to knock out your CH will be found on this site! There is hope!

Haha, this thread is killing me! ;D

I also would be interested in this

We also got double beds and you guys are more than willing to crash in our other one, provided you don't mind our near constant raucous, tantric lovemaking. ;D

That is just great! I love this group of people. Seriously I don't post all that often, but I feel so blessed to have read your stories and gotten the support and information that I have over the past few years

Tried online and got the same message. Followed up with a phone call, was transferred to Reservations, then spoke with a gentleman who stated that the rooms available for that price are sold out. So, I ended up getting one night at the CB conference rate, the 2nd night having to pay $139, and the 3rd night $78 (they have some "birth year" special, where you pay the same rate as the year you were born?) Disappointing to say the least, since now in addition to the 70+ mile commute from our selected airport, we are not able to obtain the CB rates for each night.

Booked our airline tickets, got the time off work, and booked the hotel room, all without doing as much research as I probably should have. I got a great price on the airline, flying from Mesa, AZ straight to what I thought was Chicago. As it turns out, we are actually going to be flying into Rockford/Chicago, which I naively assumed was the same as Chicago. So, long story short...we are landing in Rockford on the 15th and will have to commute to the conference. It appears that I will be about 70 miles away from the hotel? I am assuming that the airport shuttle isn't going to take us (or will they ) For for those who may know, what would be the best way to get there? Car rental? Train? Horsedrawn buggy? Is anyone else going to be landing at that airport? Any info would be appreciated! I am pumped!

Excellent! Thanks so much!

My wife is now going too!

I must be the exception, but Red Bull seems to bring on a headache if I am in a cluster

I can't wait to meet you all!

Excellent! It will crazy to meet so many other clusterheads after never having met another one in the past 15 years of having them

Who's going to be at the conference this year? Count me in!

I know, especially since the amount of atrophy seems to correlate to the length of time having CH. I started getting them at age 16-17Â Interesting about their results not showing the same abnormalities in the hypothalamus that were previously thought to be associated with cluster headaches

This will be my first clusterbusters conference, so I just had a quick question. Perhaps you already do this, but is there literature provided at the conference that we can bring home to provide to our neurologists? If not, I think it would be a great idea to help keep our physicians in the know about the latest CH research/studies. The reason I ask, is that I recently went a very highly regarded neurologist here locally, considered to be one of the best in Phoenix, and he didn't seem to know much of anything about the treatment of CH with LSD, LSA, or psilocybin. I just thought it would have been cool to be able to show him research or documentation that displayed the efficacy of these drugs in treating CH. I was thinking along the lines of the chart that talked about the response of CH to LSA http://www.erowid.org/chemicals/lsa/lsa_article2.pdf More stuff like that to educate docs who may not otherwise see this information.

Recently I have been mixing 1/2 teaspoon powdered ginger in some liquid and pounding it right when I feel the shadow. I haven't really noticed any change in the headaches though

http://www.painmedicinenews.com/ViewArticle.aspx?d=Pain+&+The+Brain&d_id=374&i=July+2011&i_id=744&a_id=17470 High-Tech MRI Reveals Brain Atrophy From Cluster Headache by Andrew Wilner Honolulu—Voxel-based morphometry (VBM) of magnetic resonance imaging data revealed multiple areas of gray matter brain atrophy in subjects with cluster headache, according to research presented at the recent 2011 annual meeting of the American Academy of Neurology (P03.044). “Our VBM findings agree with several morphometric studies that have suggested reduced gray matter density in pain-transmitting areas in patients with chronic pain,” said Massimo Filippi, MD, from the Scientific Institute and University Osperdale San Raffaele, Milan, Italy. “At present, however, these findings do not have immediate consequences for treating cluster headache.” Cluster headache is a relatively rare neurologic disease, affecting only 0.01% of the population, but it is the most severe of all headache disorders and, as of yet, has no cure. To determine how the brain is affected by cluster headache, Dr. Filippi and colleagues compared 15 right-handed patients (13 men, two women, mean age 44) with episodic cluster headache to 19 right-handed healthy volunteers (12 men, seven women, mean age 42) using VBM. VBM showed that patients with cluster headache (vs. those without) had significantly more gray matter atrophy in several areas of the pain matrix network, including the right thalamus, bilateral posterior cingulate cortex, bilateral middle frontal gyrus, right middle temporal gyrus and right precentral gyrus (P<0.001). Additionally, the extent of atrophy in the left middle frontal gyrus correlated with disease duration (P<0.001). The researchers found no significant differences between subjects and controls in mean diffusivity or fractional anisotropy of the brain’s white matter. Although prior research with VBM and positron emission tomography found patients with cluster headache had abnormalities in the hypothalamus—proposed as a key component in the pathophysiology of cluster headache—the current study showed no such abnormalities. “Dr. Filippi’s poster muddies the waters a little bit, because his group didn’t find the same abnormalities in the hypothalamus that had previously been reported,” said Stewart Tepper, MD, professor of neurology, Cleveland Clinic, Lerner College of Medicine, Ohio, who was not involved in the study. “The increasing sophistication of brain imaging, however, will allow us to continue to gradually work out the entire anatomy of the efferent outflow of cluster headache and learn how best to treat it.”

When I am in a cycle, heat is a definite trigger. Not only temperature, but when my body overheats from exertion I almost certainly get hit

Got the time off work and my airline ticket today!! I can't wait!

Thanks! I can't imagine a spouse not wanting to learn as much as possible, but it is nice that you are wanting to offer an alternative!

Is there a reason that spouses wouldn't be attending the conference/presentations? Is this just to offer an alternative to the conference or are spouses/companions not encouraged to attend that portion? Sorry if it is a stupid question, but I have not yet been to one of these

I am thinking about going to this one. Maybe I will bring the wife too, if she can make it

I'm not asking for your address Although I certainly can see where you are coming from. I wanted to go to last years conference since it was near my old stomping grounds, but wasn't able to attend. Maybe this year I will be able to BTW, your screen name has nothing to do with beer, does it?

Perhaps this has been done before, but I was curious as to where everyone is from. I have only met one other CH sufferer in my 15 years having them (briefly, it was a patient in the ER I work at), and wonder if there are any others in my general vicinity I am from Eugene, Oregon but currently live in Mesa, AZ Mods: If the topic has been done before or is inappropriate feel free to do with the thread as you like.