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Title: The Monsters Have Returned..Anyone Else Notice? Post by JohnMcCloy on Aug 25th, 2006, 12:06pm This is my first time here.Im glad I found a place to talk & Tell my story and hopefully get some thoughts from fellow sufferers. Well After a nice Year and a few months the longest interval i can remember since i was a child the Monster have returned.Im a 25 Year old Male living in Manhattan and i have been afflicted since i was 13.I was diagnosed by myself early because my mother has Clusters It took the Doctors 10 years to diagnose.That shows us just how much progress they are making with treatment if they cannot even diagnose in some case. Anyway they began last Week exactly ironically enough on the highway to drive up to go camping for the weekend.Does anyone else notice that you can sense when they are coming even if you have not had a a headache yet.You can feel it in your skull bones and nasal cavity and your eye even though there is no pain but just a sensation.I LITERALLY FELT MY NASAL CAVITY AND OPENING UP AND CRACKING FOR 10 MINUTES GETTING ME READY FOR THE HEADACHES.I usually have very very mild clusters in the beginning.Sometimes they last for a few mins sometimes they do not even come i just have the sensations.Then they become more frequent and more intense.A Few years ago i was able to abort an entire cycle by steadily taking a daily regimen of a concotion of pills i had read about on some sites. I was Taking Melatonin,GNC Chinese Way Nasal Herb remedy Pills as well as Energy Rush from GNC loaded with Caffeine & 1 Herbal pill.would take 2 each of the melatonin & Energy Rush and one herbal pill.I could not believe after all these years i had stopped them.Sometimes it would feel like i was having the headaches but i stopped the cycle to one every few days and when they came it was either very very short or hardly any pain.I was thrilled. I was clear for about a year maybe.Then they returned and i tried the same concotion bout i could not find the same herbal pills and was bombarded with pain but it was a quick cycle & Then in the spring of 2005 I had the worst headaches i can ever remember and nothing was much of a help.Anyone sometimes forget you have CH & say to yourself thank lord i dont have them now they ruin weeks of your life sometimes more. Anyway i came here mostly for advice and telling of my latest concotion. New GNC Bio Remedy Pills,3 mg Melatonin,250 mg Magnesium & 500 Mg Taurine.Coupled in with cessation of Alchohol which i found to be a Main trigger for me & This new Sinus Buster Spray i have coming And some Redbull/Rockstar Energy drinks. I have heard mixed tales about Sinus Buster but ill give anything a try it was pretty cheap and i have also noticed eating spicy food & Cayenne has aborted some attacks in the past so im pulling no punches every little bit helps. The only step i have not gotten to yet was Imitrex Injections which i will try to avoid for as long as possible. I look at this way if i can abort 50% of my attack or lessen the pain thats about 40 hrs worth of sever pain I can do without. Anyway any further suggestions that any of you have found helpful would be appreciatted.I wish everyone short cycles and long intervals. |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by brewcrew on Aug 25th, 2006, 12:16pm Welcome to clusterheadaches.com. Ever consider seeing a neurologist? Bill |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by nani on Aug 25th, 2006, 12:21pm Hi John, welcome. I wonder if the Chinese herbal had kudzu in it? It would explain those attacks that didn't really hurt much. Taurine is showing promise as a prevent, too. Read about kudzu here: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362 It wouldn't hurt to see a neuro... pain free wishes, nani |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by georgej on Aug 25th, 2006, 12:25pm Oh yeah, I can feel them coming. I know when my dread familiar is in town. That's when I circle the wagons. I'll third (or fourth) the idea of seeing a neuro. Best wishes, George |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by JohnMcCloy on Aug 25th, 2006, 12:41pm Wow good call on the kudzu I bet it was in there.You know what the only other time in my life I was able to abort attacks was when i was 15.I recieved a random set of Herbal pills from a family friend used to treat sinusitis.I was just beginning to have the CH again and i took these for the entire 2 months and had only one more. Ill bet there was Kuzdu in the herbal pill as well.Im going to get some right now.Have you guys had success with this as well? Can i get it at GNC or Vitamin Shoppe? Also I always felt that the key to these Clusters was our Sinus Cavity.Perhaps im wrong.I hate that Hollow cold agitating feeling in my Sinus. Thanks for help guys.I have never seen a neurologist I always assumed they really had no treatements as of now that were entirely effective against CH. |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by Yorky on Aug 25th, 2006, 12:43pm i can relate to the cracking sensation(i get mine at the back of my left ear)seems to let me know hes back,within 2 days of the crackin...wallop. but this time after my cycle i got the cracklin(letting me know he was going?) but this time hes hangin around you sound like you need some o2..... ps i call the cracklin sensation...a type of constricting/deconstricting sensation. good luck.. |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by BlueMeanie on Aug 25th, 2006, 12:55pm Welcome John, Sorry to hear the Beast has returned. Read up on medicine for CH's. Most of what you are trying will not work for CH's. It's not like a regular headaches, as I'm sure you know. Those herbals and such might work for regular types but not Clusters. on 08/25/06 at 12:06:23, JohnMcCloy wrote:
Why ? [smiley=huh.gif] In 26 years, I've found that it's the only thing that does work besides 02. Good luck to you. Hope it's a short cycle this time around. PF vibes |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by JohnMcCloy on Aug 25th, 2006, 1:02pm To be honest I would love to be able to give the O2 & Imitrex a shot i just cannot afford it.I have no medical im a Independent Contractor. |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by seasonalboomer on Aug 25th, 2006, 1:16pm Hey John, Welcome to ch.com! You spend a fair amount of time and money on all of the herbals and alternatives in your efforts so far. If you spend a little time here you will realize there are some treatments that many of us have success with. Time and money spent on mysterious herbal supplements can quickly add up to a couple of Imitrex injections. I've used Kudzu as well, and had success with it. So, i'm not saying that alternatives are bad. I'm just saying that by painting so called "conventional" approaches as too expensive or bad for you you are missing about 80% of the progress that sufferers have access to. Oxygen: Call your local home medical supply outfit. Find out if they supply O2 for anyone with Cluster Headaches. Maybe they can recommend a Dr who has given those prescriptions and you can get him to write you one. Know any welders? There are more than a few ways to find access to Oxygen. No side effects and works for so many, EFFECTIVELY. I could not eat out one night a month to cover the average monthly cost of my O2. Don't miss the obvious things in front of you in pursuit of a magic answer. And by god, don't waste time, money and PAIN on Sinusbuster. It's snake oil with regard to Clusterheadache. Read up here. It's a site with a lot of truly useful information. And there are ways to manage CH with some of the treatments available. Particularly for episodic suffers like you. Scott |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by Charlotte on Aug 25th, 2006, 4:00pm http://www.papanature.com/store/Search.aspx?c=Herbs&kw=kudzu Hope this works. PapaNature kudzu page. Charlotte |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by Sandy_C on Aug 25th, 2006, 4:24pm Hi John, and welcome. I'm sorry you're back in the clutches of the CH beast. You are not alone. Many of us here are trying to combat CH without using the high powered prescription meds. We rely on things like Kudzu, Melatonin, Red Bull, ice water/ice packs (bags of frozen peas), 02, and alternative treatments that we've learned about from Clusterbusters.com. If you don't have insurance, you can use welder's 02. Get your tank from the welder or from e-bay, regulators and non-rebreather masks (better yet, look into Clustermasx) are also available on e-bay. The cost is low, and well worth it if it knocks back your CH. Just read these boards. You will find many ideas for treatments that might help you - not all will work - hopefully some will. You've got nothing to lose and everything to gain. Best wishes for PF Sandy |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by JohnMcCloy on Aug 25th, 2006, 9:17pm Thanks for the Advice I will really Consider getting myself some o2 if i cant bring this cycle under control.Thanks to you guys I just ran out and picked up some kzudu Root. So right now my regimen is going to be: 2 Magnesium 250 mg Daily 2 Melatonin 3mg 1 Mid Day and one Evening 2 Taurine 500 mg Morning & Evening 1 Herbal Bio Remedy Sinus Pill from GNC 2 Kzudu Root Capsules maybe 3 ill see how it works out I also have 16oz Rockstars standing By in case of a hit to attempt to Abort. I wont be drinking any alchohol because for me that is a big trigger.Anyone else ever just have one drink and regret it within an hour? I have been dealing with these for over 13 years so im fairly accustomed to them however I never knew there was a Pain rating scale but after reading it over man have I been on the receiving end of a KIP 10 sometimes. I thought i was crazy and the only one who cursed myself and god & fought my furniture...lol |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by brewcrew on Aug 25th, 2006, 9:24pm John - I haven't had a drink since the middle of January because I'm deathly afraid of what it'll do to me. But, I just had two back to back pain free, sleep filled nights thanks to my new Rx of Sansert. Started last Saturday, and once I got past all the side effects, I've been sleeping like a baby. People without CH just don't realize what a godsend a full night's sleep is. Anyhow, I might just get the cajones to have a drink sometime soon. Best to you, Bill |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by Charlotte on Aug 25th, 2006, 9:28pm Yep. I thought I was crazy too. If you don't get relief with your regimine, you might up the kudzu and magnesium, it looks like as good a plan as any. You always have to tweak 'em some. Is exercise good for you or does it make your headache worse. You know, sooner or later, you may need to see a doc. Charlotte |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by JohnMcCloy on Aug 25th, 2006, 9:33pm LOL Man i wish they would do a documentary on Clusters..Actually not a bad idea i always wanted to do a film.Maybe it would bring some attention to those who do not fully understand the suffering we all go through. I CONSIDER MYSELF LUCKY I AM NOT A CHRONIC SUFFERER.Those People should be on disabilty because how can you function like that and live a life its terrible. As for the drinking i think we have all been to the point where we have 6-7 days of pain free excellent nights of sleep except for maybe a baby cluster and we say well were in the clear.And one drink gives you a Kip9,10. You spend the whole night cursing your self while you writhe on the floor in pain.With me i find that beer is the biggest trigger over anything else.I wonder why. Glad your having clear nights.I dont think we are far away from managing these for good. |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by Charlotte on Aug 25th, 2006, 9:35pm Well, I'm a workaholic so I have to figure out how to keep working. It is hard but doable. I have a life, it's just not the one I used to have. Charlotte |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by JohnMcCloy on Aug 25th, 2006, 9:37pm Your not a chronic are you Charlotte? |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by Charlotte on Aug 25th, 2006, 9:38pm Yes. But the neuro dosen't think it is clusters. I get hit every 2 hours. I have some meds that are helping. Charlotte |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by JohnMcCloy on Aug 25th, 2006, 9:44pm Omg im so sorry to hear that.So he does think you have Clusters even though you have the Cluster Symptoms with one sided,Doppy eye etc? |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by Charlotte on Aug 25th, 2006, 9:53pm The droopy eye is missing. Pain but no droop. That, and the frequency. He thought it might be chronic paroxysmal hemicrania but decided it wasn't that either. He did me a big favor by deciding it definitely wasn't migraine. One doc kept insisting it was migraine and told me I wouldn't have a problem if I did what he told me to. My friends here said they would help me get through it, no matter what it is. Charlotte |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by JohnMcCloy on Aug 25th, 2006, 9:57pm Well i hope it is treatable and they soon have something to cure or make your ailment something you can cope with. P.S.- Im starting to get shadows..lol Damnit |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by Jonny on Aug 25th, 2006, 10:02pm on 08/25/06 at 21:57:31, JohnMcCloy wrote:
LMMFAO [smiley=laugh.gif] |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by JohnMcCloy on Aug 25th, 2006, 10:09pm In due time there will be a cure or something relatively close so that people do not have to suffer.May not be for 2 more decades but it will happen. |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by Fredmyyster on Aug 25th, 2006, 10:09pm Guess i got lucky, i didnt even know i had had CH till 7 weeks ago. All the while i thought it was sinus. ( 25 years ) duhhh Anyhow, the Dr gave me Fioricet and it worked perfectly ! He gave me Replax if needed and thank Buda and everyone else, i didnt need it. I hope you get your meds right so you can be PF soon. |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by Charlotte on Aug 25th, 2006, 10:10pm ROTF&LMFAO about "cure". Sorry about the shadows. Slam your rock star. Charlotte I was busy rolling on the floor laughing and when I posted it was no longer appropriate. I wish you the best. |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by JohnMcCloy on Aug 25th, 2006, 10:12pm I think most people think it is sinus because that it what it feels like at first.I would have thought it was sinus all this year if my mother did start getting Clusters when she was in her 40's. Shes taken everything under the son and her cycles went from every year to every 3-4 years. |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by Ree on Aug 25th, 2006, 10:39pm on 08/25/06 at 22:09:39, Fredmyyster wrote:
Fioricett is a mild barbituate and those can actually cause some rebound headaches so be very careful... Also without the huge cannon ofa flame heading toward my cranium.....if your headache was taken away or aborted with Fioricett I doubt very much if it was CH...actually I have Migraine and Fioricett does nothing but make the Migraine pain dull..... Relpax is a good med if ever your "Clusters" get worse..... ree |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by Charlie on Aug 25th, 2006, 11:28pm LOL too on "cure." While this is not a cure, it made my life better most of the time: 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: The Monsters Have Returned..Anyone Else Notice Post by Charlotte on Aug 25th, 2006, 11:35pm Charlie, I hurt myself trying this. I tried to visualize and mentally redirect the blood flow, but found out I was also shaking my arm. When I am not so hyper, I found some relief doing what I think you are saying. Can you simplyfy the idea so I can see if I am doing it right? Charlotte |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by Charlie on Aug 25th, 2006, 11:55pm I've been trying to explain it for years. That description is the best I've been able to do. I can't seem to do better but... I hold my left arm....makes no difference I suppose...a bit away from my body pretend to drain blood down my neck into my arm. It feels odd doing so but it's like an internal push that makes my arm and hand very warm quickly. You have to keep up this thing during the hit. It's the only way it will work. Once it shortens or modifies the hit, you'll get the idea. It's not easy but nor is it something impossbile. I'm sorry but I can't seem to relate what the neurologist made me understand. He just put his arm on his desk and asked me if I could do it. I could. I just wish I could get inside your head to show you. Keep working on it is all I can say. It works, it really does. Charlie |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by Charlotte on Aug 26th, 2006, 1:21am Thank you, Charlie. I understand something, and it does work. Thank you, again. Charlotte |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by Carl_D on Aug 26th, 2006, 2:47am Hi John. Like everyone else, I'm sorry you have to b here but glad you found us. Yes, the beast has returned here as well and is being a little bitch (actually, a pretty big bitch). You mentioned a documentary on CH. It is actually in the works. It is called "Clusterheads" and has been in the making for awhile, with alot of footage shot already of folks here who deal with the beast first-hand. I get the popping in my ear, jaw, and my sinus snaps, crackles and pops like I have it stuffed up with Rice Crispies during a CH. Hope your cycle breaks soon. Peace, Carl D |
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Title: Re: The Monsters Have Returned..Anyone Else Notice Post by JohnMcCloy on Aug 26th, 2006, 2:53pm Thanks for the thoughts I definetly look forward to the documentary.I just got this Sinus Buster stuff in the mail so im trying it out today. I began taking the Kudzu and saw some mild changes like you guys said. The sharpness of the pain dwindled a bit however i was left with a haze of shadows while i was working all morning which you guys also said happens. I pumped 2 shots of the Sinus juice up nose and within 5 mins the shadows were gone for the first time in 3 hours but lets see how they stand up to the wrath of Full Blown cluster. Im also downing taurine 500's like they are stopping production. As of now i am in my cycle one week and i began my first times CH's at 1030 in the morning the past 3 days. When i started the kuzdu I actually added an early morning CH to the Cycle it was the most painful yet but When i got the 1030/11 AM cluster it was a flutter really more like a bad shadow. So far i have had clear evenings and clear sleep until this mornings 6am hopefully with all these diff pills i can keep that.Good to everyone dealing. P.S.- My mother used to get CH worse than I did but she had her thyroid burned out by radiation unrelated to CH and has not had them since. |
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