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Title: God Help me this never happened Before. Post by JohnMcCloy on Sep 1st, 2006, 8:33am Starting Last night @ 10:30pm I began betting blasted by Kip 8 & 9s. 10:30 pm till 12AM (Right Side) 3:30 am Till 5am (Left Side) 6am till 7am (Right Side) 7:45 am Till Now (Left Side) I cannot take it.Am i getting 2 cluster cycles at once? P.S.- im doing this all without meds i have no insurance. Can this happen where you have 2 cycles at once? |
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Title: Re: God Help me this never happened Before. Post by chopmyheadoff on Sep 1st, 2006, 8:36am im not the best person to advise on cycles as my life is one long cycle :( however, it is quite common for me to get a belting left sider and as soon as this subsides get a killer right sider. it has never come back on the left again after that though. sounds aweful. do meds work for you if you can get hold of them ??? dont despair mate - things can only get better |
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Title: Re: God Help me this never happened Before. Post by JohnMcCloy on Sep 1st, 2006, 8:41am I actually have never been on meds.My whole life I just dealt with it like i moron.Main thing was i never knew what meds to take when i was in my teens. I went to a doctor when i was 20 and told him i had clusters & after about 20 mins he realized i do have clusters and was actually looking it up in a book because he had no clue. He prescribed me so silly nonsense that did not do a thing for me.Yeah this is strange for me its never occured.Scary thing is i always get a 10am CH. This one will prob end in a few minutes but now im afraid im gonna get hit with a 10am CH. Thanks for help. |
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Title: Re: God Help me this never happened Before. Post by chopmyheadoff on Sep 1st, 2006, 9:17am dood, get yourself back to the doctors and ask - no - DEMAND a referral to a neurologist. preferably one that specialises in headaches the meds that you should be asking about , the ones that have worked for me after 7 years undiagnosed are :- imitrex (sumitriptan) injection kit - this has been my life saver. when one of the bastards rears its ugly head - quick shot and its pain free - IN SECONDS !! Verapamil - this is a preventative - this stuff taken every day has made me go from 2 headaches a day, to 1 a week (which i can then kill with an imitrex shot) there are other meds but im sure your neurologist will advise on which is best for you you dont have to suffer with this mate, lots of people use oxygen very successfuly as an abortive although iv never bothered . good luck and i hope you are pain free at the moment andy |
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Title: Re: God Help me this never happened Before. Post by Bob_Johnson on Sep 1st, 2006, 10:03am Two approaches which are not expensive: Cephalalgia. 2005 Jun;25(6):403-11. Links Melatonin, the pineal gland and their implications for headache disorders. Peres M. Brain Research Institute, Albert Einstein Hospital, Sao Paulo, Brazil. Melatonin, the pineal gland and their implications for headache disorders. Cephalalgia 2005. London. ISSN 0333-1024There is now evidence that melatonin may have a role in the biological regulation of circadian rhythms, sleep, mood, and ageing. Altered melatonin levels in cluster headache and migraine have been documented. Melatonin mechanisms are related to headache pathophysiology in many ways, including its anti-inflammatory effect, toxic free radical scavenging, reduction of proinflammatory cytokine up-regulation, nitric oxide synthase activity and dopamine release inhibition, membrane stabilization, GABA and opioid analgesia potentiation, glutamate neurotoxicity protection, neurovascular regulation, serotonin modulation, and the similarity of chemical structure to that of indomethacin. Treatment of headache disorders with melatonin and other chronobiotic agents is promising. A double-blind, placebo-controlled trial shows melatonin is effective in cluster headache prevention, other studies also show benefit in other disorders. Melatonin plays an important role in headache disorders, offering new avenues for studying their pathophysiology and treatment. PMID: 15910564 [PubMed - in process] ============= Folks here have been using doses in the 9-12mg/day range and a number of them are reporting good results. Relatively inexpensive; no Rx required; in any drug store. ==== If you have access to an M.D., even though you don't have insurance for meds, ask the doc for a sample of this med. Several of us have had excellent results and the cost per dose is not bad (but shop around). Print this out and give to your doc: Headache 2001 Sep;41(8):813-6 Olanzapine as an Abortive Agent for Cluster Headache. Rozen TD. Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa. OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache. -------------------------------------------------------------------------------- Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ. |
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Title: Re: God Help me this never happened Before Post by starlight on Sep 1st, 2006, 1:18pm John--wow that is REALLY weird. I have been getting episodic clusters for 18 yrs. Never felt any pain on right side until this cycle I had 2 occassions where the pain "tried to switch sides"--first time was the first night I was on melatonin and woke up with HA coming on--within the first minute or so the HA tried to switch sides and then quickly subsided. Again later in the cycle when the cycle was peaking pain got really bad one HA and "flooded" into other side of my head very very briefly--while also staying on left side --whacked. Anyway, what you are describing does almost sound like having two cycles at one time. And you know, these headaches are so strange that I wouldn't doubt that could be possible. Every time you think you have them figured out they do something freaky. John, you need medication. I'm paying out of pocket for 02--$150 bucks a month for unlimited refills. Try melatonin. I really wish you could get checked out by a really good neuro with what is happening to you with the both sides. You need to get these checked out--go to the emergency room. They have to treat you. Maybe they can give you some med samples like imitrex, etc. or some kind of information about free care. I am sorry I wish I had more advice. Please let us know how you're doing. Starlight |
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Title: Re: God Help me this never happened Before Post by starlight on Sep 1st, 2006, 1:23pm John, I was getting many HA's a night during part of cycle (6)--it sucks--the O2 helps (most times not all), the melatonin helps me sometimes--also the Imitrex (I only had a couple lying around) seems to prevent the next HA for me--I go into deep sleep. Also try benadryl--if you're getting wailed at night it can't hurt--might buy you some sleep. Good luck man. |
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Title: Re: God Help me this never happened Before. Post by JimH on Sep 1st, 2006, 2:04pm If you live near Mexico you can buy 5/100mg sumitriptan pills for $30. If not, ask your doctor if he will at least give you some Imitrex samples. I've even called a few online places on the internet who offered Imitrex. The Oxygen companies will charge around $10 for a tank with no insurance. Best of luck to you! Jim |
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Title: Re: God Help me this never happened Before. Post by JohnMcCloy on Sep 1st, 2006, 2:27pm Thanks for all the advice.It seems like im just torturing myself with these.I have never had them so bad.Im only 2 weeks in so im hoping that its at its peak but im really missing out it seems.I have been dealing with these raw for years suffering but it seems like Imitrex injections & Verapamil are the way to go. I had success in the past buy taking Melatonin,Herbal Sinus Pill,Magnesium.Now i even through in the Kudzu & Redbulls to try to abort.Redbull did abort one attack and Kudzu im not so sure on.I have only had 2 pain free days so far. Your going to laugh at me but last night after getting bombed with these things and being up all night I was finally fed up and when i got the 5th one I screamed and went into my bedroom and shadowboxed like a madman because I know sudden strenuous exercise can alleviate pain.Well I just pretended i was fighting the Cluster itself and it was gone for the most part. I would rather not have to embarass myself like this on a daily basis. I cannot afford to go to an emergency room i have children i have to pay for Etc.I already missed 2 days of work because of these badboys.What are the typical prices for Imitrex injections if you have insurance. |
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Title: Re: God Help me this never happened Before. Post by Katherinecm on Sep 1st, 2006, 3:46pm I think the emergency room suggestion was in the event that you need treatment, the ER has to treat you, even if they know you will never pay your bill. If you can't afford a doctor you can always go to the ER. Some people take advantage of this and ruin their credit, others talk with hospital billing staff and settle to pay for a much smaller portion of the bill. I wouldn't feel too guilty about settling to pay a smaller portion- working in insurance I have seen hospitals charge up to ten times the amount that is the "reasonable and customary" allowable amount. If someone has insurance, that means the hospital writes off 90% of it as a discount. If they don't, the patient is responsible for the whole bill unless they are savvy enough to settle. If you live in a medium sized city or larger there are probably a couple of free clinics in town that may be able to give you free medications too. Free clinics are a better option because they free up hospital emergency rooms to treat real emergencies (not that a hit isn't sometimes a real emergency). Drug companies donate their expired samples to the free clinics, most expired medications are good for one year. If they don't have trex, etc at the very least can help you fill out the paperwork to get free meds from the drug companies. You can find information about these free programs here: https://www.pparx.org/Intro.php Also, many people without insurance have luck with oxygen. You can buy welder's oxygen pretty cheap. I don't know much about this but there have been many posts on it and someone who is an expert on it will probably be along shortly. You might also try melatonin. It's a pretty cheap supplement that seems to help a lot of people. 3 generic benadryl just before bed might help you get some rest- at least for 4 hours until it wears off. It prevents you from getting to the stage of sleep where you get hit. |
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Title: Re: God Help me this never happened Before. Post by JohnMcCloy on Sep 1st, 2006, 3:52pm Im poppin Melatonin like its candy.Not helping unfortunately.I had success with it in the past however no longer.Thanks foe the ER advice. The only other thing im considering is having my mother Fill Scrips for what i need. She has clusters as well but she is also a very difficult person so we shall see. Im trying to purchase welders O2 today however i need help on setting it up. |
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Title: Re: God Help me this never happened Before. Post by vietvet2tours on Sep 1st, 2006, 4:16pm Don't buy the tank lease the tank.It's a lifetime lease.you can sell it give it away or whatever.If the tank or valve need upgrading it's on their dime. |
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Title: Re: God Help me this never happened Before. Post by walkertexasranger on Sep 2nd, 2006, 11:10pm Where are you located?? |
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Title: Re: God Help me this never happened Before. Post by TxBasslady on Sep 3rd, 2006, 12:48am Sorry you're having a rough go. Was wondering how long you've been taking the Kudzu?. I took it for 10 months....and it really made a difference. The only thing about it is you need to take the recommended dose...I took Nature's Way, 2 capsules 3x's a day. You need to take it at the same time each day. If you vary the dosage...and forget to take a dose...it's not as effective. It takes a week or so to get in your system. I wish you lots of luck..and PF time. Let us know how you're getting along. Jean |
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Title: Re: God Help me this never happened Before. Post by unsolved1 on Sep 3rd, 2006, 12:58am Screw all that sufferin'. Find some help ! If all else fails, head to the ER for some Solu Medrol IV. (That should give you a break) Look for patient assistance programs (free drugs) Goodluck UNsolved |
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Title: Re: God Help me this never happened Before. Post by StressFree on Sep 11th, 2006, 5:10pm I've never had the attacks switch sides, but almost every cycle mine seem to increase in frequency and intensity before the cycle ends. Some cycles have ended with attacks that were several hours long or even most of the day with only slight variation in pain intensity. You know it's bad when dropping to a KIP7 for a while seems like you are getting a break! I sure hope your cycle is at an end. Hang in there in any case. I'd definatey hit the Emergency Room if it doesn't let up. Prayers for you, Rich Edited to add - Sorry I didn't check the date of your message. Just read of your ER experiance. As suggested by others, Oxygen would give you some relief. I'd get the right mask that's mentioned on this website to try and avoid returning attacks. Otherwise you may need to hang out with your tank for a few days to have a good break from the pain! |
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Title: Re: God Help me this never happened Before. Post by kcopelin on Sep 11th, 2006, 6:14pm Check your PMs kathy |
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Title: Re: God Help me this never happened Before. Post by wam on Sep 12th, 2006, 11:52pm Ice packs and stand under the shower head if you cant get any meds.Also a little trick I learned is I put on my headphones,sound on low with Bruce Springsteen's "The ghost of Tom Joad" cd in it.Its real relaxing folk music about the south-west.Always takes my mind of the damn CH's.I hope this helps. -William. |
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Title: Re: God Help me this never happened Before. Post by chopmyheadoff on Sep 13th, 2006, 8:37am on 09/12/06 at 23:52:50, wam wrote:
wow - that would be worse than a ch !! lol |
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Title: Re: God Help me this never happened Before. Post by Phil L on Sep 13th, 2006, 1:11pm Bob, I just read your September 1 post on this thread and want again to say thank you for your most informative and thoughtful contributions to this site. I seldom post myself, but am a frequent "reader" and have come to appreciate your insightful comments. Phil L. |
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