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Title: Cluster Headache or Sinus Infection?? Please help Post by Talon96 on Jun 18th, 2006, 4:50pm Hello All - My name is Chad and I've suffered from Cluster headaches for approximately 10 years now. Ive been fortunate enough to have a 1-2 year break from the pain, but am now suffereing from some of the worst headaches I've ever encoutered in my life. My question is, could this be related to allergies or a sinus infection (of which I've recently had both). Im a military officer and I fly alot which makes this all the worse. When treated at a medical facility, they have little idea on how to treat a cluster headache sufferer. Ive read and re-read the symptoms and Im pretty sure that Im going through another cluster bout - but wanted to know if anyone had any advice... Appreciate the help or insight anyone can offer. By the way, my headaches all seem to come on when i go to sleep at night (within the first hour or so of sleep). Thanks. |
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Title: Re: Cluster Headache or Sinus Infection?? Please h Post by Charlie on Jun 18th, 2006, 5:29pm Hi Talon: Sad to say that with your being knocked out of bed shortly after falling to sleep.,...1-1/2 hours like clockwork for me, I'm pretty sure you're right. As I've been free of the things since 1991, I'll leave the medical stuff to the youngsters. I seriously doubt you have a sinus infection or allergy. They can be painful but rare like a cluster. Here is something that worked for me: Dr. Wright’s Circulatory Technique: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. Charlie |
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Title: Re: Cluster Headache or Sinus Infection?? Please h Post by Talon96 on Jun 18th, 2006, 5:37pm Thank You Charlie. I will certainly give this a shot tonight as Im sure Im be re-visited by the nightly horror. Its take me awhile to figure this out w/ respect to what was causing the headaches. I was over in England last week and suffered several headaches while there. I thought it was the English country-side that was causing them, but after the night I had here yesterday, Im more than sure the Clusters have returned. Fortunately, I made it through the 8 hour flight back to Washington DC. Your recommendation has to work...I will likely be practicing tonight as I hope and pray for a restful night of sleep. What's worse, I have to travel this week to California...believe it or not, Im a military/motivational speaker (talk about Irony - tough to be motivated when you suffer from CH). I thought about cancelling, but dont want these damn CHs to rule my life and other troops are depending on me out there. Thank you for you kindness and insights. All the best. Chad :D |
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Title: Re: Cluster Headache or Sinus Infection?? Please h Post by LeLimey on Jun 18th, 2006, 6:41pm Hi Chad, its nice to meet you, I'm sorry it has to be here though. What meds are you using? lets see if there is anything we can do to help you. For what its worth I don't think sinus meds will help you but I do sympathise, you've just joined the long ranks of those of us who wish we DID have sinus infections ... BTW, thank you for what you do. We here (ch.com and GB) DO appreciate what all you chaps in the military do Helen |
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Title: Re: Cluster Headache or Sinus Infection?? Please h Post by E-Double on Jun 18th, 2006, 9:36pm Certainly good motivation.... If people know that you suffer from one of the most painful diseases known in the medical community and that you serve our country and live a very functional life then you most certainly can brin inspiration. Get yourself some oxygen if you can to abort!!!! the problem with some of the preventative meds will be side effects that might effect your flying. Meds are great for some and others like me have decided to go med free and to just deal with them the best we can. This is a great resource to know like the back of your hand...print it out and give it to the doc http://www.brightok.net/~mnjday/chtherapy.pdf It will present the appropriate treatments that you should seek and your doctor should know!!! If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!! http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover" http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753 If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep. With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time. Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not... The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern. I stayed with melatonin and have had decent sleep overall. (Maybe I should start folowing my own advice again hahahaha!) It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression..... Like I said we are all different. Here is a link that will bring you to a wonderful letter that explains the disease beautifully to the laymen. http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=knowya;action=display;num=1114467535 Best wishes, good luck & stay as positive as you can!!!! Eric |
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Title: Re: Cluster Headache or Sinus Infection?? Please h Post by Talon96 on Jun 18th, 2006, 11:21pm Helen & Eric - Thank you so much for your responses and helpful suggestions/advice. As of right now, Im not on any medication that is specific to CH's. Ive been pain free for almost 2 years (after reading some of the entries on this website, I realize how truly blessed and lucky I am for this) and as such, haven't had the need to go on anything. I managed to find an old prescription of Verapamil that to my recollection...helped me several years ago. What I do need, however, is something to treat me when I wake up with the painful headaches. Tomorrow I see a regular military physician. Its so ridiculous as he/she won't understand what CHs are and with any luck, they'll refer me to a neurologist. From there, I can hopefully use the info sheets that you all recommended to get the right drugs to treat this horrific pain. Until then, I will have to deal with the violent awakenings. I hate the cliche' that misery loves company, but there is some humble comfort in knowing Im not alone. Thank you both for sharing with me your advice as it will resonate in my mind tonight when Im dealing with the next CH episode. Chad |
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Title: Re: Cluster Headache or Sinus Infection?? Please h Post by LeLimey on Jun 19th, 2006, 3:48am Chad I swear by o2, used at 15 LPM through a non rebreather mask it's simply fantastic. I can abort a hit in around 10-15 mins using a non rebreather mask or, on average 5-7 minutes using a clustermasx (www.clustermasx.com) I love it! Oxygen is a vaso constrictor so it works in much the same way as Imitrex and Zomig which are drugs called triptans and are very effective for CH. Imitrex is available as an injection and is very effective, 5-10 minutes. It's also available as a nasal spray and in tablet form. DO NOT BE FOBBED OFF WITH PILLS!! They do NOT work for CH, they take too long to kick in. They work on migraines but not CH so be firm on that. Imitrex nasal sprays DO work but have a short half life of about 2 hours so if you are given nasal sprays ask for Zomig as it has a half life of about 12 hours. I believe that one kicks in in 10 minutes or so but I haven't actually used it myself. These drugs are both vaso constrictors too but work differently to O2. O2 ONLY constricts the blood vessels in your noggin where as triptans constrict them throughout your entire body so if you have heart problems these are maybe not for you - I'm not your doctor and he/she/it DOES know beston what you should take! That's also why you shouldn't take more than 2 triptans in 24 hours and you should never mix them. IE if you take a imitrex at 9am no zomig until 9am tomorrow. Another triptan you may want to consider is Frovatriptan. This is only available in tablet form so is useless for hits.. it takes up to two hours to kick in. HOWEVER.. it does have a half life of up to 26 hours so it is well worth using as a preventative, take it two hours before bed for an uninterrupted nights sleep.. or flights.. the list is endless! It can caused rebounds if used to often so it's best used no more than 2-3 times a week. If ever you head this way again and need o2 for your stay or anything give me a shout and I'll make sure you're sorted out :) Another thing to try is red bull or any other high caffeine/taurine drink. These can abort really quickly (caffeine is a true friend to clusterheads as its a vaso constrictor! LOL) and are at their best used on those pesky shadows through the day. It all helps to know about though! Let us know how you get on okay? Helen |
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Title: Re: Cluster Headache or Sinus Infection?? Please h Post by Bob_Johnson on Jun 19th, 2006, 7:23am Hardly need to say to you that you can't play with meds on your own when you on flight status. Were you on the ground I'd second the Zyprexa suggestion but I'd not want your flight surgeon to know about it without his O.K. The lack of experience with headache will be the barrier. I'd print this out and give to your doc. Since it's a source of information from one of the better headache docs in the U.S., it will be acceptable to your medical people. Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002) http://www.brightok.net/~mnjday/chtherapy.pdf |
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Title: Re: Cluster Headache or Sinus Infection?? Please h Post by Richr8 on Jun 19th, 2006, 12:45pm It looks like the crew took pretty good care of you. I'd just like to say, welcome, sorry you suffer, glad that you serve (thanks!), and follow the advice on O2 and Melatonin. |
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Title: Re: Cluster Headache or Sinus Infection?? Please h Post by Talon96 on Jun 20th, 2006, 1:00am Thanks to all for you advice and suggestions. They mean the world to me and what's more, make me realize that I'm not alone. I spent most of today trying to explain to the flight doc what it is exactly that I have... I plan on flying (commercial - not me behind the wheel) ;;D to California to give my presentations. Im slightly nervous about the flight out and hope that the CHs will stay at bay until I hit the ground. At least in the hotel room, I can find some refuge. I can't let this stop me from making my appointed rounds... I will certainly stock up on Red Bull (great idea there!) Until then, I was prescribed Verapamil and Indiocin today by the neurologist. Not sure if that will work, but we'll see. I hear so much about the O2 solution such that I want to try it to see how it works. I hope you all are doing well and thank you all your help! Chad |
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Title: Re: Cluster Headache or Sinus Infection?? Please h Post by LeLimey on Jun 20th, 2006, 4:06am Indocin is great for paroxysmal hemicrania (or PH 'cos that is just TOO long to type!) but isn't usually effective for CH. It can be extremely rough on your stomach too so you should really have some meds to protect your tum! Verap is a front line preventative treatment but it can take a while to get into your system. Its often given with a prednisone taper. (look at me - using the US names not the Brit ones, aren't you impressed?! ::) ) The pred will block attacks while you wait the couple of weeks for the verap to kick in. You should also have an ECG before commencing verap and at each increase of dosage. Most people don't start to get benefit from it until about 480mg although there are always exceptions to that! - and alot of people are taking up to 960mg to get relief. Your doctor maybe edgy about prescribing such high doses which is why you absolutely should see a HEADACHE SPECIALIST neuro.. I can't stress that bit enough. A neuro specialising in MS for instance is going to be about as much use to you as a chocolate fireguard. Did you ask about triptans at all? I'm a bit concerned that they have given you ONLY preventative meds - stock up on that old Red Bull or generic equivalent! LOL Keep in touch okay? We'll do our best to help you through this and we'll hopefully give you a giggle once in a while to cheer you up too. There is no better place for a ch'er to be than here! :) Helen |
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Title: Re: Cluster Headache or Sinus Infection?? Please h Post by Talon96 on Jun 29th, 2006, 1:02am Hello Again! ;;D Happy to report that I made it through my motivational speeches last week in California. I felt a pesky Shadow during two of my speeches but was able to keep them at bay with massive doses of coffee and Red Bull (thanks for the advice Helen)! Still suffering every single night, approximately one hour after sleep, with my CHs and I pop an Indiocin in hopes that will provide some relief. It usually does in 15 or so minutes, but the catch is I can't fall back asleep immediately or else the CHs come back. Do these things ever let you sleep?? At any rate, thanks again to all for the advice and suggestions. I am still without my follow-up with the neurologist but Im hopeful next week will bring such an opportunity. Till then, I continue to suffer and pray with you all for pain-free days and nights. Chad |
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Title: Re: Cluster Headache or Sinus Infection?? Please h Post by LeLimey on Jun 29th, 2006, 4:10am Hi Chad I'm so glad the red bull tip worked well for you, that's really put a smile on my face for today. See?!! ;;D I would strongly recommend trying melatonin as mentioned by Eric (E Double) above. Many many ch'ers have found relief using that and you can read more about it here http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Melatonin This is an extremely useful site so bookmark it! It was written and is constantly being added to by a clusterhead who also posts here (Floridian) and his advice and research is second to none. Looking forward to hearing how you get on, be sure and ask your neuro for O2 when you see him. Alot of us swear by it, it's the only abortive I use and I'm chronic. Wishing you PFDANS (pain free days and nights) Helen |
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Title: Re: Cluster Headache or Sinus Infection?? Please h Post by E-Double on Jun 29th, 2006, 8:20am MELATONIN |
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Title: Re: Cluster Headache or Sinus Infection?? Please h Post by ShawnW on Jul 1st, 2006, 7:08pm A surefire way to tell if it's sinusitis or not is through a CT scan. The CT scan is basically a spinning X-Ray machine that captures a 3 dimensional image of your sinuses, and what's inside them. It's expensive, and will expose you to a much higher dose of radiation than a regular X-Ray, but it's the gold standard for diagnosing sinusitis. If you have sinusitis, the doctor would see one of your sinuses as being obstructed. If you had something else going on in your sinuses (cysts, polyps, etc.), the doctor would see those too. If not, the pain is being caused by something else. |
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