Cluster Fluster??!!?? (long long long post)

[ Follow Ups ] [ Post Followup ] [ Cluster Headaches Messages ]

Posted by Russ ( on July 09, 2000 at 05:05:39:

Hello fellow cursed ones... Can't say that I am glad to be here, but am REALLY glad that you and your fantastic forum is here for some possible help? This is my first post, although I have been reading the site daily for about 3 months now, ever since 2 of my Doctors suggested that I might have CHs. Here's the loooooong story... hope you can stay with it. The week after Easter I took a trip on an airplane and began sneezing once on board. I sneezed for 5 days straight while in Miami for Spring break. Once I returned home, the sneezing quit, but I soon developed a constant headache on the RIGHT SIDE ONLY. I am a 48 year old male and had not heard of clusters before. I had a headache behind the right eye, the right temple, the right eyebrow, and right cheek bone. After studying your site for several months now, I would say that these headaches or HEAD PAIN as I prefer to call them would rate around 3, 4, or 5 on the Kip Scale. They are constant and have been with me now for 11 weeks. They do not seem to follow the cluster "HORROR" pattern that most of you speak about. They do NOT wake me up from a sound sleep, in fact that is the only time I can find relief? They do not come out of nowhere and then peak and subside after a few hours. Instead they are ever present, only varying from 3-5 on your kip scale. None the less, they have driven me nuts, and I am about at my wits end! After having them for a solid week, I went to my GP, and after hearing my story of the prior sneezing fits, he took the 1 second look up my nose and diagnosed me with Sinusitis and put me on a week of antibiotics (Cefzil). This had no effect whatsoever... A week later, my symptoms were all the more settled in. Pain behind the right eye, temple, eyebrow and forehead. My right temple, right forehead, right eye, and right side scalp was "sore to the touch". They remain that way to this day. My right eye is sensitive to sudden changes in light, i.e., when I first open the door to go outside, I get a stab of pain in the right eye for a second and then it quits. After a repeat visit to the GP, he said that I might have some kind of neuropathy that could cause me to go blind if not treated with steroids, so he put me on a week long dose of oral corticosteroids (Medrol Pack). THE STEROIDS MADE ME A RAVING LUNITIC AND A COMPLETE INSOMNIAC! I was up for 48 hours at a time before I could finally take cat naps. The steroids had NO EFFECT on the right side head pain, but it did help some tendonitis that I had in my ankles from past softball injuries. He then put me on another week of a stronger antibiotic (Zithromax). This too had no effect on the pain. I noticed that my right eyelid was drooping and that my pupils were unequal. I then went to my Opthamalogist, who said that there was no Uveitis or glaucoma in the eye, but that something weird was going on. He sent me to a Rhuematologist to have a blood Sed rate test and check for Temporal Arteritis. The Rhuematologist did the blood work and said that I had NO signs of temporal Arteritis. He said that it sounded like I was describing cluster headaches to him and he put me on Imitrex and Verapamil 240mg/day. At first I thought that the Imitrex helped, but the pain would be right back in 3 to 4 hours. He then switched me to Amerge, which is a longer lasting version of Imitrex while keeping me on the Verapamil. After a week, the "Triptans" didn't really seem to work anymore.. in fact I think they only worked in the first place by causing me to feel flushed and tingly all over which took my mind off of the head pain and facial soreness. He also gave me some Vicodin to take because I had told him that 2 Advil every 4 hours seemed to keep the pain down to a level to where I could halfway concentrate at work. He diagnosed me with painful "HORNERS SYNDROME" and recommended me to a Neurologist. After reading up on Horners Syndrome, I found that I had ALL 3 classic symptoms. My right eylid droops to about 3/4 open, my right pupil was constricted to about half the size of the left eye in dim candle light, and my RIGHT ONLY forehead refuses to sweat! I have had persistent Horners Syndrome now for about 8 weeks. I have read a lot of scary serious underlying causes for this, but I also see it listed as going along with Clusters? I have waited this long to post, because I wanted to jump through all the obvious MD hoops that I could before coming here. The neurologist gave me a chest X-Ray for a lung tumor check as a cause for the Horners. That came back completely normal (non smoker here, whew!). I just had 3 types of a head/brain CT Scan done this past week... One with a special type of dye which supposedly shows artery abnormalities the best. and the other two contrast scans for sinus views, tumors, masses, internal bleeding, etc. I just found out yesterday that they all came back COMPLETELY NORMAL! Whew again! No sign of a dissected caratid artery, no aneurysm, no tumors, sinuses clear. So now what the heck do they call it??? She said that lots of times they never find a cause and end up calling it Raeders Syndrome which is a painful Horners Syndrome associated with "ATYPICAL CLUSTER HEADACHE"... Soooo, at this point, I have been to 4 types of specialist doctors, and none of them can find anything wrong except that I have a painful obvious CLASSIC HORNERS SYNDROME. The Neurologist said that she would start trying different "Meds" on me to try and break the Horners Syndrome/Atypical Cluster... Oh boy, I see myself now as a Guinae pig with side effect city coming my way. I guess I should be REALLY GRATEFUL that they didn't find a tumor or screwed up artery, etc. Thanks for bearing with me... because now comes my question to those of you who have already gone through this miserable trick during midlife crisis... How many of you out there have a PERSISTENT Horners syndrome, and does it EVER go away? Also, would you consider my symptoms to be "Atypical Cluster headache"? I did go through a series of "Ice Cream" headaches more consistent with your descriptions of Clusters OVER 20 YEARS AGO. Back when I was 25, every year around Thanksgiving when the air became dry, I would get these INTENSE ICEPICK headaaches behind ONE eye and into the temple which would last for a few hours at a time and then go away. They would hit every other day or so and last for about a month or two and then go away. I finally had a CT-Scan way back then, which was also normal and they treated me with Fiorinal, I believe. I had them for about three years in a row and grew to become afraid of the Holiday season. Then in 1980 they didn't come... NOW 20 YEARS LATER THIS? It has come in the Spring rather than the Fall. They have not been the insane intense icepick head banging variety (Thank God), instead they are CONSTANT level 3, 4, or 5 type Pain with a tender "sore to the touch" forehead, scalp, temple, and right eye. Also OTC analgesics and/or Pain killers do seem to help with the pain as it is ever present. Alcohol does not seem to make them better or worse. The antibiotics or Prednisone did NO HELP except to DRIVE ME MAD! The Verapamil only seems to keep me in a constant state of constipation. (no pun intended, it's no fun) No other neurolocial symptoms, i.e, paralysis, double vision or blurred vision, drooling, etc. JUST PAIN! The sinuses are clear and I have my teeth cleaned and checked every 3 months. I can't remember if I had any Horners Syndrome WAY back 20 years ago or not. I was just a kid 25-28. But these are different, albeit they are in the same location. Could this latest storm of grief be related to those horrific episodes that long ago? Back then, no one called them clusters, but from reading this and other literature, I think that they might have been. It sounds like I am stuck in a perpetual shadow, as you call them? However, my right eye does not water, my right side nose is not congested, they do not wake me from my sleep (Thank God again), they do not vary much in intensity, INSTEAD THEY NEVER GO AWAY! They are, however, only on one side and do stab like an icepick when I first look at a bright light, and I have facial pain associated with a PERSISTENT HORNERS SYNDROME? Just call me "lopeye". I have gone through all of the tests that the Docs can think of, so they are calling it painful Horners syndrome caused by "Atypical" Cluster headaches. (They are just guessing at this point, I think) Again my main two questions to the fine and kind members of this great support group are.... 1.) What are your personal experiences with Horners Syndrome? Does it only occur during INTENSE ATTACKS, or does it remain or occur with just shadows? 2.) Do I belong here? If so I PROMISE not to make each post this longwinded and rambling! In your collective opinions, does this sound like it could be "Atypical Clusters"? What is an Atypical Cluster? and am I hanging in the shadows just waiting for the "beast" to make me an offical member? Can you have chronic shawdows? Can you have episodic shawdows that will hopefully go away soon for another 20 years? Anyway, MANY THANKS to those of you who have taken the time to read this longwinded flustered person's post! Any and all comments are greatly appreciated! If nothing else, you gotta give me credit for maybe taking your mind off of your own pain for the 2-3 hours it took you to read this message LOL. Thanks again in adavance for the understanding, and I hope you all have a much needed remission or continued peace of mind, Russ. P.S. Has Y2K been an exceptionally bad year for some of you who have my sympathy as long time sufferers? If so, maybe that's why I got snagged this year? P.S.S. GLAD PAULA'S OUT OF THE HOSPITAL! Hope no one else has to resort to that! Yours painfully flustered, Russ

Follow Ups:

Post a Followup




Optional Link URL:
Link Title:
Optional Image URL:

[ Follow Ups ] [ Post Followup ] [ Cluster Headaches Messages ]