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Title: Started a Journal - Please Read?? Post by Hai on Oct 16th, 2003, 1:25am Quick History – I have been suffering with headaches on one side or the other part of my head since I was in my late teens. I saw many doctors who ruled them out as sinus, teeth, and other various oddball diagnoses. It was on one night in an emergency room with my mother that a doctor came in and right off the bat stated “You have Cluster Headaches”. From that day forward I at least was able to name the beast that came to visit me a few months every year. During that time Imitrex had just come out in emergency room injections only. Through the years I was visited with one or two episodes a year that lasted between 2-5 months at a time. I found a doctor who was listed in the Headache Foundation, he got me in right away and started me on a Taper down dosage of prednisone, and a medicine called Doxepin. Within weeks the clusters vanished, only to come back in a few months or a year later. We stuck to this treatment during the episodes that came back along with Imitrex pills. After that they just vanished in 1997 …….until THIS YEAR (2003) As far back as May (2 months into being un-employed, and on a late night/early morning sleep schedule) is when I can remember my headaches beginning. At that time my primary doctor was treating me with Loratab, and Soma. I had muscle spasm like feelings in my neck, and at night would wake up with what I would consider a minor cluster headache. It was like a small amount of pressure in my head, that I could plug my nose for 3-5 seconds every 30 seconds to relive the pain until it went away. Alcohol also triggered these attacks earlier, thus if they passed while awake, I had a full nights rest. If any medicine had to be taken at night for the pressure/pain it was naproxen/Aleve. My doctor in the meantime was working on getting an M.R.I approved for me. He also scheduled me with a PAIN SPECIALIST. It took about a week to get in to see the pain specialist; his approach to treating cluster headaches was steroid injections in the neck, shoulder and head. He swore that he was 95% sure that my muscle spasms in the left neck, was triggering the headaches on the left side of my head, however he would not begin the process until my MRI’s came back, which was still in the approval process. So for the meantime, he put me on Loratab, Soma, and a drug I never heard of before called “Neurotin”. It had something to do with helping for seizures but also had results in pain treatment of the nerves/blood vessels as I was told by a pharmacist. Recently (starting around the very end of September), my headaches started to worsen, however were intermittent in severity. One night I could have an attack, before bed (usually while drinking beer) that would hurt, but I popped 2 Aleve and the pain subsided usually in 30-45 minutes. However as the days progressed, I started getting woken from my sleep in a lot of pain. I started taking Excedrin Migraine, and drinking caffeine. This helped, and I would eventually go back to bed and sleep the rest of the night. However there was one Saturday night that was un-bearable, and I called my doctor the next day through his answering service to see if he could prescribe me some prednisone and/or Imitrex in case the same pain came back to visit me that night. He was rather angry with me due to the fact I had missed the MRI that past week, due to a job interview I could not miss (and this after months of waiting on approval anyhow), and admitted right there and then on the phone “I DON’T KNOW ANYTHING ABOUT CLUSTER HEADACHES!!!. He then said that I better get my M.R.I. done soon, and if I had another cluster of that magnitude to go to the emergency room and get admitted. The following week on Wednesday the 8th of October I got my MRI performed on my neck and head. I called my doctors office to see when I would be getting the results, and was told he would not schedule me till the 29th of October to review so they could give it time for the charts to arrive. <Continued next reply> |
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Title: Re: Started a Journal - Please Read?? Post by Hai on Oct 16th, 2003, 1:28am Here is where the true nightmare started ………. RECENT EVENTS Monday the 13th of October, 1:30 AM I was awake late that night drinking beer (hoping I would catch the headache during this period before I went to bed) I did get a Cluster Headache while awake. However this time it was so severe I ended up having my wife drive me to the Emergency room. About 10 minutes after arriving at the hospital the headache was starting to wear off. I left due to overcrowding, and the fact it was early in the morning, wife needed sleep, and I would follow up with my Primary Physician in the morning. (Note: The Dr. was not in the office the next day.) Monday the 13th of October, 5:00 PM I had just finished eating a Mexican Dinner, went shopping with the wife. We came home and 30 minutes later the migraine started. I could tell it was starting by pressure in my left nostril. It then began to spread from front to back of head. I had taken within a matter of 10 minutes from the start of the pain 2 Excedrin Migraine, 2 Loratab’s (10 mg), and Soma. I took a hot shower, and then came out dried off, only to be dripping in sweat 2 minutes later from the pain. I was pacing the house in agony, and groaning very loud. My wife was scared, and made me go to the hospital again. The doctor in emergency room prescribed a 5 day supply of prednisone, 3 x 20mg tablets per day (taken all at once). I was given 6 doses of Imitrex nose spray, and given a shot of demoral (it did not much effect on me). Tuesday the 14th of October, 4:30 AM My wife and I left the hospital and finished with the pharmacy around 12:30 AM. Although I had a shot of demoral, and felt a small effect of drowsiness, it had little effect on me. I could not sleep, so I ended up going to bed around 3:00 AM. At 3:45, I woke up in the same agonizing pain as I had earlier that day. I did the Imitrex Nasal dealio, and stood in my restroom pacing for about 20-25 minutes before the pain went away. OHHH how I wish they had given me the injection as a prescription. I went back to bed about 4:15. Tuesday the 14th of October, 11:30 AM I awoke from my sleep with yet another terrible headache. I was dreaming, and during that time in my sleep tossing and turning plugging my nose to push the pressure out my ears. I finally got up and took yet another Imitrex nasal spray. 20 minutes later the pain was gone, and I was basically already worn out from the pain my body went through. Tuesday the 14th of October, 8:00 PM A friend of mine was over, and we were in my room chatting when all of a sudden came that feeling of pressure in my left nostril again, and soon after a small pain, followed by the rest of the triggers that end up wrapped around the left side of my head. I had already taken 2 sprays of Imitrex in under a 24 hour period, and was told not to exceed that. So I broke out the Excedrin migraine, 600 mg of motrin, 2 Loratabs , and 1 Soma. Then grabbed an ice pack and wrapped it around my head. The pain was kept under control. Of course I was still doing the nose plugging trick for about 30 minutes to get the pressure out the left side of my head. Personally I think this attack was not a heavy one to begin with, since later that night I had the same sensation about 12:30 AM, and again at 4:00 AM. I stayed up most the night, not being about to sleep until 6:00 AM. Wednesday the 15th of October, 7:45 AM I awoke with another pain on the left side of my head. Runny nose, and eyes tearing up. I had passed the 24 hour period upon which I could now take 1 dose of the Imitrex nose spray (which I did). 20 minutes of pacing, groaning, and ice packing my head in the bathroom …pain gone. Yet today was the day that I finally got to see my old doctor at his headache clinic. I called to confirm the appointment and he said to come in at 11:45 that day. I stayed awake till appointment time. Wednesday the 15th of October, 11:45 AM Arrived at the doctor’s office, and he seemed to be in a rush of sort. I recalled he was fitting me in right before he had to leave town. Since we had not seen each other for almost 8 years he asked if I remembered the treatment he gave me that seemed to work. I recalled “Prednisone taper for 1 week, and Doxepin increase from 25mg a day till I maxxed at 125, five days later. He was not so keen on the Doxepin at this time, but like I said was in a rush. He also gave me a prescription for a medicine called Zomig 5mg tablets. I can only take a maximum of 3 tabs per week however. I did not have a chance to discuss “What about the fact I get this pain every night” dealio with em. I would say the visit lasted maybe 3-4 minutes max, before I was pushed out the door, and told to come back next week for an appointment. <continued next reply> |
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Title: Re: Started a Journal - Please Read?? Post by Hai on Oct 16th, 2003, 1:29am Wednesday the 15th of October, 10:38 PM (Random Thoughts) I am now sitting here typing what you have just read so far. I am rather concerned, and confused. On one hand, the clusters have now broke pattern and can occur at any time of the day. However I can guarantee (unless the man upstairs takes pity on me) that when I go to bed, there will be an attack (usually the big baddie). I will wake up, take 1 dose of the remaining 3 Imitrex, and then go back to bed. What I have done for the last 2 days, during the day, is when I feel an attack coming on is dropping the narcotics cause I am awake and can catch the pain quick, BUT what am I going to do with only being able to take 3 doses of Zomig a week? How am I to know that this terrible pain one night will not be worse the next. More bad news also, I am trying to get a job, and there is no way …I mean NODA that I would be able to maintain even a 9-5 with these attacks. My body is totally drained after a cluster attack, and I usually end up sleeping 9-12 hours after hit by one of those bad boys which is abnormal for me. I am about to lose my un-employment checks, and my wife’s income alone will not support this household, without those checks, and on top of that the money that we have been saving to try and make it from month to month just to keep a roof over our head is being drawn out from savings now for this expensive care, and medicine. *cry*. On a positive note, once before when the clusters broke pattern and went crazy like this it was the end of my cycle, yet on other occasions that was not the case. I hate taking all this medicine. I HATE IT! I especially don’t like playing with the dangerous Imitrex / Zomig due to the fact I have high blood pressure (however it’s been down to normal lately). I am putting my faith in the power above now. Asking him what I did wrong to deserve this nightmare and for his forgiveness at the same time, and also hoping this Doxepin theory of mine WORKS! Oddly enough it had been used during my last 3 cluster cycles and at that time they ended within 2 weeks to a month (however it was always prescribed 3+ months into my cycle already, so the CH could have just played its course by then). *Sigh* This is going to be my journal. I have shared everything I can think of with you in a slim chance that maybe I mentioned something that caught your attention, that you could respond to with advice or to inspire any ideas, alternative treatments, etc. As for my stress level, it is being maintained by Anti Anxiety drugs, and maturity. I will take a shot guess and say that maybe the problems going on in my life, are getting the best of my subconscious thus the wake up calls 30-45 mins into sleep cycle usually when REM kicks in. I have not yet seriously thought about taking the risks by following the procedures given at www.clusterbusters.com , it scares the hell out of me that I could take a bad shroom, and die a slow painful death, due to having ZERO connections with people who know the substance well enough to help me out with the procedure. Plus I get paranoid smoking marijuana; imagine what effect the Psilocybin/LSD might have on me. #To be continued, but for personal use, or with my doctors from here on out. Thanks for taking the time to read. Larry 32 Years Old Smoker Computer Engineer (Unemployed) |
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Title: Re: Started a Journal - Please Read?? Post by ave on Oct 16th, 2003, 2:29am Dear Hai, we on this site are not doctors. We can tell a few things though. First off, drinking alcohol is a trigger for most of us. So don't do it. REM sleep (some 2 hours into sleep) is a trigger for most. There is a range of meds that you can read about under the buttons to the left, that you might want to discuss with a doctor, preferably a good neuro who knows about clusters. Read all there is under the buttons on the left. print it out and take it with you. What you mainly need is a combo of a good preventative and a good abortive. Check out what is most used (buttons left) and try and get yourr doc to prescribe it. Go to the OUCH site and check out cluster resources. The cluster is a wily beast and can behave differently each time. Meds that work will loose their effectiveness next time around. On this site you will find most of what you need to at least keep the beast at bay - if only a little. But educate yourself - Most doctors don't know enough so you'll have to do it for them. |
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Title: Re: Started a Journal - Please Read?? Post by Dave_Emond on Oct 16th, 2003, 3:38am Hi Larry, Now that's what I call info! Usually, we barely get much background from new visitors and it is tough to help them out. So anyway, welcome to Clusterville, sorry for the reason you have to be here though. Keeping a log is a good idea, I do the same, comes in handy as the CH tends to make me forget many details. A few things stand out in your log that raise a few questions and a few words of advice or opinion. First off, you must understand that you did nothing to deserve this, and are therefore not being punished by God. I'm a man of faith myself, and I can assure you that you need to change that train of thought. You are not being punished. You'll cope much better without thinking you brought this on yourself. It does sound like you do suffer from CH (Have you taken the "Cluster Quiz" on this site?) I find a few areas that seem somewhat strange, keeping in mind we all haves some differences, so this is not any type of judgement. I don't see any mention of you seeing a neurologist. This is the first time I've ever heard of a doctor immediatey diagnosing CH on the spot. An MRI should have been done in the beginning! You could be dealing with something much more serious. CH won't show up on an MRI, but must be done to rule out other possibilities. You should also get a referral to a Neurologist who specializes in headaches. Don't tell him/her that you have Cluster Headaches at first. Describe your symptoms in detail and wait until he/she suggests a diagnosis before you mention what your family practioner is treating you for. You seem to get a lot of sleep for someone in cycle with CH. Some can, don't get me wrong, but the amount of sleep you mention is quite high for a CH sufferer in cycle. 9 -12 hours of sleep after an attack? Most would beg for just 4 hours. You do mention waking to pain during REM at times, which is consistent with CH. Plugging your nose for 3-5 seconds at a time to relieve pressure is a new one for me, especially if it works. Once you get your MRI back, I suspect you'll be advised to see an ENT. You mention pain in various ways, even migraine in one area. Can you describe exactly what this pain feels like during an attack. The runny nose and tearing eye are consistent with CH, but something seems to be missing in the rest of your pain descriptions. I'll admit that was a lot of reading and maybe it is I who missed something. Please tell us exactly what you would tell a neurologist what the pain feels like during an attack. After reading through the whole log, I found myself saying "Hmmm ... that's odd?" quite a few times. This doesn't mean I don't think you have CH, but possibly CH and another disorder to accompany it? For a doctor to say you have CH so quickly and at such an early age with no MRI, no neurologist could quite possibly tend to make one believe that is what they have and assume it is so. Thereby associating your pain over time to try to fit the mold of a CH sufferer, when you might indeed have a serious neck or brain disorder that could be fatal if not checked. I sincerely hope the MRI comes back with the chart reading "normal" although this would tend to lean towards CH which I wouldn't wish on anyone. I highly suggest you see a neurologist and an ENT. Not because I don't think you have CH, but more for your own safety. And, who knows, you may even find you suffer from something there is a cure for! Hope you post again, if you're a Clusterhead, you're in the right area and we can offer much advice and support to help you cope. Talk to you again soon? Thanks, Dave |
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Title: Re: Started a Journal - Please Read?? Post by Patrick_A on Oct 16th, 2003, 3:52am Triggers are defined as Headache starters. #1 trigger for me is alcohol #2 processed foods, ie...Mexican food is full of the presrvatives that trigger the CH #3 REM sleep #4 Stress All of those are while in cycle. My neuro put me on a high dose of Prednisone and verapamil and broke my cycle. Good luck, Patrick |
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Title: Re: Started a Journal - Please Read?? Post by Prense on Oct 16th, 2003, 7:20pm Welcome aboard Larry! That was a very nice and informative post. I was also diagnosed with CH by the first GP that I saw for HAs. I had them for 7 years prior to seeing a doc. Personally, I would avoid the OTC meds and definately not sleep so much. Sleeping more than 8 hours will almost certainly guarantee an attack for me. As far as alcohol goes; beer and rum trigger an attack for me about 80% of the time. I am very cautious with any other alcohol I may attempt to drink. Prednisone may help you, but many times, it is accompanied with a longer term preventative like verapamil until the cycle is over at least. I have no experience with imitrex NS. I can tell you that imitrex injections work in about 10-15 minutes for me. Even if I allow the attack to progress some, the trex takes care of it most of the time (only 2 times it did not completely kill the attack). I have 100% success with it so far when I catch the attack early on. O2 is used as well as an abortive. It is key to catch the attack immediately for success with O2. As Dave previously said, get to a neuro and make certain the diagnosis is correct. If CH is the culprit, you will more than likely have to demand trex in injectible form if that is what you desire. In my experience, docs seem hesitant to offer it up as a viable option. If you can score the trex shots and a preventative that at least reduces the frequency of your attacks, you should be able to handle a job. Stabbing in stall #2!! No one else needs to know what you are doing... just a 15 minute dump. ;D Chronic's point of view. Best wishes man! Chris |
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Title: Re: Started a Journal - Please Read?? Post by Hai on Oct 18th, 2003, 9:27am Thank you very much for your kind replies. The last two days the headaches have been less. I however am on my final day of taking 3 prednisone doses. The night before this I had 0 CH (however did wake up to what I thought was the start of one in the morning after a full nights sleep) however it went away once I was up and moving around. Right now, I woke up to pain on the left side of my head, and took some of the nose spray (was glad I got to avoid it for 2 days). I am keeping track of the meds I am taking now in a quick .doc file. Trying to take less pain meds, by the day. Once again thank you guys for the advice and It was definately taken. I see my head doc (the mean one) this week. He is not a neurologist but does specialize in headaches. He is GOOD, real GOOD. I have in the past seen a neurologist (in fact she is the one here in Vegas who was Mike Tyson's fight neuro, and part of the Headache Foundation?). This was the Neuro I had to beg for doses of doxepin for 2 months before she prescribed it. 2 weeks later ...no headache. I am now finally up to 125 MG of the stuff again, starting from 25 mg a few days ago and working up the scale per day. I am hoping the last few times I took it, where the CH ended within a few weeks to a month, was not a fluke (end of cycle),a nd this stuff does kick in again. Thanks again Everyone. Larry |
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Title: Re: Started a Journal - Please Read?? Post by jonny on Oct 18th, 2003, 12:35pm MAN!!!.....What is this the battle of posts on tape...LMMFAO ;D Its not fair...you guys started without Carl....ROTFF ;D ;D .........................jonny |
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Title: Re: Started a Journal - Please Read?? Post by cathy on Oct 18th, 2003, 2:03pm on 10/16/03 at 03:38:55, Dave_Emond wrote:
Hi Hai.....great post .....welcome to the board and sorry you've had to find us...I sincerely hope that maybe you don't have Clusterheadaches but either way I think Dave has given you some great advice here and you should read it..... Good luck with the future wishing you PF times.. Cathy |
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Title: Re: Started a Journal - Please Read?? Post by Charlie on Oct 18th, 2003, 4:48pm Welcome aboard and that was a lot of information. The information you'll find here is damn good stuff. This place is the real deal and we all know exactly what this horror is like. For me, headaches that wake one out of a sound sleep, usually after about 1-1/2 hours or so, are cluster headaches. Your other descriptions nail it down too. You'll find a ton of medical information and other ways to deal with cluster attacks the more you read. My advice to you is to see a neurologist if you don't have some success. They usually have some knowledge of clusters and maybe he will consult with your current MD. Keep in touch and let us know how you're getting along. I know this thing can tear into bank accounts and aggravate things. I hope you get some kind of break though. Don't throw in the towel. Stick around, Charlie |
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