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machine6
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New to this site but not to clusters
« on: Aug 21st, 2004, 2:19am » |
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Well I have just within the last few days figured out that I have clusters. From what I read I was cronic for 4 yrs and then I went into a dormant phase for almost 1 year. Now they are back and worse that ever unfortunatly.I am 28 yrs old and now fighting up to 7 a day at all different times. Alot are at night which is becoming a problem as im getting no sleep. I have been to my medical doctor and never been to a neurologist or even asked if I was interested in going to one. I have been taking Zomig 2.5 mg tabs but they are sooo expensive that I cant afford them as I work for myself and have no insurance nor can I afford it. So I go to the old faithful headache powder and take 1200 mg's of asprin in powder form. I have also been given nortriptylin 10 mg tabs but they do nothing except make me drowsy as im having a cluster.
I am at a loss with what to do and I know I take way too much asprin and its going to eventually cause me more problems than the headaches. My symptoms are shooting pain in my left eye, runny eye and nose on my left side. I only get them on my left side and have never had one on my right. They have been back for 3 wks now and I almost forgot how bad they really felt until 3 wks ago. I dont know why they all of a sudden have started to re-occur but im starting to get alittle agitated as im getting almost no sleep at night. The one thing that seems to have helped some is the chiropractor. I dont know why but it seems to help for a couple of days but then thet are back again. I went thursday and did great for the first 20 hrs with 0 clusters but then today at work I got another one. Well atleast I got 1 full nights sleep to make up for the 6 that were on and off. Sorry to rant but not even my wife understands what I go through and she thinks its all in my mind and im just thinking my headaches are there. But I tell ya if im thinking the pain is there im doing a really good job at making something up I didnt even know existed until yesterday. I thought I was just having Migranes until I read a piece of material at my chiropractors office and then I decided to do some research on it and I found this site. So my name is Chris and im in North Carolina and im a cluster sufferer. I dont really know what else to say but it felt good to finally air my problem to some people who know what im going through.
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pubgirl
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Re: New to this site but not to clusters
« Reply #1 on: Aug 21st, 2004, 4:11am » |
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Hello Chris
And a very sad welcome to the land of cluster headache sufferers. We do know how you feel, better than anyone else in the world 
May I just ask a couple of questions before we all launch into a string of advice about abortives, preventives etc.
Have you ever had an attack you allowed to run its course without drugs? If so, how long did it last and how did it end.
Failing this, how long do your attacks last on average when you use the aspirin?
Wendy
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judyw
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Re: New to this site but not to clusters
« Reply #2 on: Aug 21st, 2004, 8:12am » |
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Sorry to say welcome Chris...but sounds like you are in the right place for support, information, and, a place to vent...Read all that you can to the left side of this screen and encourage your wife and doctor to check out the information here...There is a support corner for your wife...she is welcome to check in anytime...Many here do not like the Chiro, but through the years I have found some relief even if just for a relaxation in the neck for a few hrs...I agree on the aspirin concern, have you tried some of the Ibuprophens for less stomach disturbance...also, sometimes taking so many can bring on rebound h/a's...check out a neuro to make sure nothing else going on in the head and then try some of the suggestions here for relief...O2 sounds like a good try for you...keep us updated on how things are going and know that there are several in your area for closer support and information on medical care, etc...wishing PFNAD's...PPP
judyw 
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judyw143
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machine6
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Re: New to this site but not to clusters
« Reply #3 on: Aug 21st, 2004, 11:25am » |
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well pubgirl I have let the monster run its course and without asprin they last anywhere from 30 min to 2 hrs. With the asprin they last about 10-30 min depending if I catch it shadowing. Also to Judyw I have had a CT scan and all came up negative in that and said there was nothing in my head to explain my headaches. About the Ibuprophen,I have tried 2 800 mg pills but they take soo long to take affect that its hard to wait for them to work. My doctor is pretty good about helping me with free samples of meds but he can only give me so many freebies and for 65 bucks a visit id hardly call them free. Its one thing to have insurance and have a prescription plan that helps knock down the cost of meds but im not that fortunate. I have printed off the medical page from the link on the left and I am going to show it to him and maybe see if that helps him understand what I have and how to treat it. Thank you for your support and it would be cool to meet someone im my area that goes through this everyday like me. I also dont know what I would be considered cronic or episodic since my cycle started 3 wks ago after 1 yr from having none. But before that had them steady for 3 1/2 - 4 yrs and no there was no break in the 4 yrs of having them. I worked every day with them and just toughed it out so I could work. That was hard but now im back at it again only this time they seem more intense and more frequent . Thanks for the support again.
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pubgirl
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Re: New to this site but not to clusters
« Reply #4 on: Aug 21st, 2004, 3:35pm » |
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Hi again Chris
I suspect this may be impossible if you haven't got insurance (don't really understand your system over there) but if there is any way you can do it, it would be a good idea to see a neuro who specialises in headaches who can give you a confirmed diagnosis and recommend the right treatment for you. Self diagnosis is a game most of us have played, but there is no substitute for an expert opinion.
Usually cluster attacks are not touched by aspirin or ibuprofen, and as you have already identified yourself, taking large quantities of either is not good anyway, and may also be creating even more headaches.
I also personally couldn't contemplate 'toughing it out' with a CH attack and no proper abortive.
Is there any way while you work out how to get to a neuro that you could come of the OTC painkillers and try oxygen (there are quiet a lot of posts on here about people getting welder's 02 cheaply)
That may give you some idea whether all your headaches are primary headaches, or if any of them are being caused by your other drugs. It might also be a good indicator of whether you have Ch (although 02 works for my migraines as well)
If I can think of anything else I will post again, and hopefully a 'local' will be able to help more than I can
Wishing you a short cycle and pain free times ahead
Wendy
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| « Last Edit: Aug 21st, 2004, 3:37pm by pubgirl » |
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machine6
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Re: New to this site but not to clusters
« Reply #5 on: Aug 21st, 2004, 4:36pm » |
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yeah this is tough with no insureance. I have been using Zomig but its getting so expensive with the ammount of clusters im getting. The asprin is such a high dose that it does touch the headaches but im sure it causes alot of rebound headaches too. I had a rough night with 2 monsters through the night and then 1 this morning at about 11am. so im just running out of energy to even fight. The toughing out part is not easy by any means but as I have no choice and I have to work I see no other alternative. It hurts like hell and I feel like im going to die alot of the time but I continue on knowing that they will subside at some point. My wife is going to look into getting insurance through her company even thought its expensive it will be alot less going with that then trying to pay specialists and meds out of pocket. Im trying to do the best I can with them but its really becoming a problem with out my zomig.
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machine6
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Re: New to this site but not to clusters
« Reply #7 on: Aug 21st, 2004, 9:16pm » |
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Hey thanks Don that looks like it may help alot.  I really appreciate everyones help and its nice to get somewhere where prople know what you are going through.
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IndianaJohn
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Re: New to this site but not to clusters
« Reply #8 on: Aug 21st, 2004, 9:43pm » |
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Hi Chris, hope things are going better for you. I bumped up a thread about not having any insurance. It contains a link for a program that may help.
Best Wishes
John
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Did my brains fall out or is this headache over?
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Gator
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Re: New to this site but not to clusters
« Reply #9 on: Aug 22nd, 2004, 7:13am » |
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Welcome to our little corner of the net. Sucks to see someone else getting hit, but it is great that you found this place. Tons of info and lots of very supportive people.
Whew! Man that's a lot of aspirin. I'd almost be willing to bet some of the h/a's you get are rebounds. You are probably also welcoming ulcers and a host of other problems on top of the headaches. Have you tried using ice or some people use bags of frozen peas? A gallon sized ziplock baggie with dry beans kept in the freezer until needed might also be a good substitute. I would at least check into O2. Welder's O2 is often a less expensive route than Medical O2, but it is all the same stuff. Several people here can help you with the info on rigging a welder's O2 tank and bubbler if you go that route.
Here is another link to info on preventative, abortive and transitional meds and some surgical alternatives. Print it out and take it to your doc as well.
http://www.future-drugs.com/admin/articlefile/ERN020304.pdf
I definitely understand not being able to afford meds. If you don't have insurance in this country you are screwed. Hell, sometimes even with insurance you are screwed. There is a very real possibility that even if you do get insurance, they won't cover your headaches as it is a "Pre-Existing Condition." Flipping insurance companies take your money on a gamble that you won't get sick and then try to welsh on the bet when you do - bastards.
I'd better quit for now before I ramble more than I already have. Again, welcome to the website.
Gator
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Bob_Johnson
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Re: New to this site but not to clusters
« Reply #10 on: Aug 22nd, 2004, 7:43am » |
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You are getting the message that these quantities of OTC pain meds not only do not help cluster but are setting you up for rebound headache and serious gastric problems.
Ask you doc for samples of this med. Even having to buy at full cost will be less than the triptans and some of us have had excellent results.
--
1: Headache 2001 Sep;41( :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.
==============================
Then buy either the second or third title. A good book will give you an organized treatment plan and outline the major treatments in a systematic fashion.
HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Bob Johnson
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machine6
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Re: New to this site but not to clusters
« Reply #11 on: Aug 22nd, 2004, 11:22am » |
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Thankyou for all the great info guys. I tried something different yesterday and the beast has not come around since I did it. I have a med that I took about a yr ago maybe less. Its called Effexor xr. It says its equivelant to 75 mg venlafaxine HCI. It seems to have worked and I dont know why but if it keeps working im going to keep taking it. I finally got a full nights sleep in over 3 wks and no beast so far. Man I feel great but I know sometimes it works for a short time and then works around the meds so im going to cross my fingers. All I know is I got 1 good nights sleep and im sooo happy right now. Thanks again for all the great info guys and I am going to look into all that you have posted.
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| « Last Edit: Aug 23rd, 2004, 1:31am by machine6 » |
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crazy_mj
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Re: New to this site but not to clusters
« Reply #12 on: Aug 22nd, 2004, 11:42am » |
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 Rebound headaches suck!! Stay away from the Tylenol, it's just like throwing fuel on the fire!
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BlueMeanie
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Re: New to this site but not to clusters
« Reply #13 on: Aug 22nd, 2004, 5:08pm » |
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Hello Chris and welcome to Clusterville.
Sorry you don't have insurance. The Beast can be a real killer and it sure sucks to not have a weapon to fight it off. Hope you check into getting 02. It is alot cheaper than most other drugs once you get the tank and regulator paid off. Looks like others have already given you some good advice so I'll stop at that and just say hello and sending PF vibes to ya.
Take care.
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Kris_in_SJ
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Re: New to this site but not to clusters
« Reply #14 on: Aug 22nd, 2004, 8:40pm » |
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Hi Chris,
Welcome .... sorry you have to be here, and so sorry about the insurance. My husband and I are both self-employed, so I certainly know about the expense - our monthly health insurance bill is way more than our monthly mortgage payment!
Follow the links. Print them out for your doc. Beg him (or his nurse) for free samples. I can honestly say that I didn't pay for one single injectible dose of Imitrex (my abortive of choice) during my most recent cycle. I'm the only clusterhead my GP sees, so I get all the freebies he gets from the drug reps.
Also, for the record (many thanks Gator - I've been waiting to see this link again) the future_drugs link is one of the best I've read regarding medications and cluster treatment. Take it to your doc and see what he can do.
OTC meds aren't going to help and will most likely make you more miserable in the long run. While I agree that an MRI and other tests (as well as a neurologist visit) would be ideal, I also know you'd probably be facing medical bills way beyond your ability to even think about (let alone pay)!
In a nutshell ... work with your GP, but work toward relief with the appropriate meds.
Sending hugs and many PF Vibes!
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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machine6
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Re: New to this site but not to clusters
« Reply #15 on: Aug 23rd, 2004, 1:29am » |
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well guys the effexor XR seems to be warding them off for now. Its been 36 hrs since my last showing from the beast. Im hoping that this is a positive and that the effexor is working as I dont even remember why is was given to me all I know is its working for now. I dont believe that this is a break period but its hard to tell if its the meds or they are just gone. Ill keep everyone informed but this might work as a preventive for me. I have about another 14 days of supply left from the doc and im going to call about getting more. Thanks for all the help and support guys as I really needed to talk to someone that knew what I have been going through. Ill keep everyone informed on how the Effexor XR works for me and if it keeps the beast away. I am also going to look into the oxygen for an abortive measure as it sounds like a better way to go for me.
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| « Last Edit: Aug 23rd, 2004, 1:32am by machine6 » |
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