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Title: Can't Take It really need help and Support :( Post by brdygrl35 on Jan 14th, 2008, 4:15pm Hi, my name is Amy Lipman. I am about to be 24, and I have had cluster headaches since I was 15 years old. Today was the first time I have had one in over a year and a half. I woke up with it (as usual), and it became so bad I thought about smashing my head in. Since I haven't had one in so long, I did not have ANY meds available. I also do not have insurance right now so I was wondering if anyone could tell me some non prescription ways they get rid of these? The last episode I had lasted over 2 months, but started out gradual...eventually I was having 9 a day with a 10 on the kip scale. I was taking so much narcotics I thought I might have done some serious damage to my liver. This one was only about a 7, but usually the first one is not so bad (this was)...so I'm getting scared this might be the worst episode yet...it hurts so much I don't know if I can take it. The last Doctor I saw about it thought I was just fishing for drugs and told me flat out that I was lying about the pain. I have had EEGs MRI's...I need help I don't know if I can survive 2 more months of this when it started out so bad... |
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Title: Re: Can't Take It really need help and Support :( Post by LeLimey on Jan 14th, 2008, 4:26pm Hi Amy I'm sorry you're struggling but there are ways you can fight it without meds. First of all hve you ever tried ice or heat? Using icepacks on the affected side of my head and the back of my neck really helps. For others taking a really hot shower with it directed right onto your face is the way to go. I expect you know which would work best by you already depnding on how you feel in hot/cold atmospheres. Strong coffee chugged at the first twinge can help alot as can high energy drinks such as red bull/ rock star etc. They are useful as you can carry them around with you. Have you ever tried Oxygen? I know you can't get a prescription but someone will be along in a minute to tell you about welders O2 and how that can help Hang in there hon, we'll help you get through it. Helen x |
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Title: Re: Can't Take It really need help and Support :( Post by brdygrl35 on Jan 14th, 2008, 4:37pm Actually this morning I submerged in a hot bath and it helped a little, but it also might have been the 5 Excedrin migraines that I took (worried about my liver and stomach). I have been reading about oxygen, and I would love any help I can get. I also read on this site about drinking water, so I have been drinking large quantities all day today. As for coffee and red bull, sometimes caffeine helps, but most of the time it triggers my headaches. I have a whole list of food that I have found triggers me when I am in a cycle...citrus, onions, cheese, chocolate, alcohol, some dairy, tomatoes, coffee...there are others too but I can't think of them. I can't be on birth control because my doctors think the estrogen levels trigger them too. I was on Maxalt for awhile but you can only get 4 pills a month and it knocks me out for like 25 hours. I am so upset I thought I wouldn't get them again because it was so far in between, but here they are and this is only the beginning. |
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Title: Re: Can't Take It really need help and Support :( Post by LeLimey on Jan 14th, 2008, 4:40pm How long does each attack last Amy? |
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Title: Re: Can't Take It really need help and Support :( Post by brdygrl35 on Jan 14th, 2008, 4:47pm If I take medication mabe like 20 min(the worst 20 min EVER)...but sometimes I get like 7 in a day...every day for as long as my episode lasts. Usually I only get a few to start off with, then as the episode progresses, I get more and more in the day and they get more painful. If i take meds, sometimes it feels like the medication is just masking the pain, but when the meds are gone, another one comes on full blown. And then just as suddenly as they start, the cycle ends and I wont have one for usually about a year or two. |
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Title: Re: Can't Take It really need help and Support :( Post by LeLimey on Jan 14th, 2008, 4:51pm Hang in there kiddo. I'm going to pm a friend to talk to you about O2 asap. Helen |
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Title: Re: Can't Take It really need help and Support :( Post by brdygrl35 on Jan 14th, 2008, 4:52pm I'm also afraid to sleep for fear that I'll get one. |
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Title: Re: Can't Take It really need help and Support :( Post by LeLimey on Jan 14th, 2008, 4:56pm Oh I recognise that feeling too. I think just about all of us do. A lot of people get good relief from using melatonin which is OTC in walmart for instance - people vary from 6mg right up to 12/16 mg. It's well worth trying for night time hits though. |
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Title: Re: Can't Take It really need help and Support :( Post by Jonny on Jan 14th, 2008, 5:02pm To get welders 02 you need to go to a welders supply joint and rent a tank (never tell them your going to breath it). Its better that you have a man do this for you, not many chicks are into welding. ;) You also need to go to Ebay and buy a medical regulator with a CGA-540 connection on it. Think you can do this? Edited to correct info, its all good now. ;;D |
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Title: Re: Can't Take It really need help and Support :( Post by imfareware on Jan 14th, 2008, 5:03pm Hello, hang in there!! Melatonin, hot baths, ice on the head, they all helped me. |
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Title: Re: Can't Take It really need help and Support :( Post by brdygrl35 on Jan 14th, 2008, 5:06pm Honestly ANYthing is better than this and thinking about dying for 2 months out of the year. I am willing to do about anything that might help. thank you so much. its nice to have people who know what I am going through... |
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Title: Re: Can't Take It really need help and Support :( Post by brewcrew on Jan 14th, 2008, 5:13pm Even if you don't have insurance, you might want to have your doc prescribe some preventatives. They are usually generic and don't cost a whole lot. A 10-day prednisone taper, verapamil, possibly combined with lithium carbonate. The prednisone gets you through the first 10 days while the verapamil (and possibly lithium) build up in your system. Even if you have to pay full price, these are relatively inexpensive drugs. Also, my favorite abortive for when you first feel one coming on (when I'm not near oxygen) is to slam an energy drink like Red Bull. If you don't like the taste, try some of the others. They should have around 80-100 mg of caffeine and 1,000 mg of taurine per serving. My new favorite is NOS. It tastes like passionfruit. Good luck and hang in there. Just remember that cluster headaches are not fatal, and that they end almost as quickly as they start. |
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Title: Re: Can't Take It really need help and Support :( Post by George_J on Jan 14th, 2008, 5:16pm on 01/14/08 at 16:15:43, brdygrl35 wrote:
Give some serious thought to staying away from this route. Narcotics don't help most of us (sounds as if you've discovered this on your own). Normally, people have much greater success aborting the headaches, or preventing them. Narcotic painkillers don't work well, if at all, on this type of pain. Oxygen, at 15 liters per minute with a non-rebreather mask (listen to Jonny) will likely help a great deal more than narcotic painkillers. Ice wrapped in a sopping-wet cloth can diminish the pain of an individual hit, and melatonin at night can reduce the number of hits that many of us get during sleep. We'll do all we can to get you through this, kiddo. Some of us have been fighting this thing a long time, and we know and understand what you're feeling. Stay in touch, okay? Best wishes, George |
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Title: Re: Can't Take It really need help and Support :( Post by maryo on Jan 14th, 2008, 5:30pm You live in a cold climate. Sometimes I have paced outside here in Maine, wearing only my bathrobe, and that drove the headache away. Some people say a fast jog has broken a cluster. Too bad coffee is a trigger for you. You can also try benadryl with your excedrin migraine if it's a time when you don't need to be alert. I use cafergot which is an old drug and quite cheap. For it take effect faster, I have actually at times ground it up and had it bedside, then with onset of headache mixed it with juice and downed it. It can bother your stomach but I was only mildly bothered (lesser of two evils). My previous doc informally collected unused meds from patients and passed them along to people who needed the meds and couldn't afford them. Plead your case with whoever is caring for you. Often they have samples. My first neuro charged me $99 for the appt. and gave me $100 worth of imitrex. An ER visit when things are bad may prove to be a segway to better care and additional resources. I notice you live in Newburgh NY. According to the website of St. Luke's Cornwall Hospital, " In emergency situations, every patient is treated, regardless of the ability to pay. Care first is at the core of our SLCH philosophy. In non-emergency situations, we are committed to working with patients so that quality care comes before finances. For patients without health insurance or those that may not be able to pay in full for their health care, we offer a charity care program. SLCH provides financial aid to patients based on their income, assets, and needs." I also discovered that the $60 the O2 company billed my insurance costs $16.90 if I pay myself. In fact a lot of medical agencies get reimbursed by insurance companies far below what they charge self-pay patients. Again, plead your case. I hope you find some things that offer relief soon. When my clusters appeared, at age 28, they occurred only every other night. What you're experiencing is horrific!!!! |
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Title: Re: Can't Take It really need help and Support :( Post by Annette on Jan 14th, 2008, 5:45pm Zyprexa tablets work well as an abortive too and its relatively cheap compared to imitrex. You get a months worth in a box. It can work to abort a headache if taken early in as quickly as 5-7 mins. If your cycle tends to be really bad and you get as many as 9 high kip hits a day then try to get prednisone and do a taper as that will help dampening down the cycle a fair bit. The earlier you can start prednisone taper with some preventives like Verapamil the easier the cycle tends to be. Its much harder to control things when its in full swing. Once the preventives kick in there will be less break through hits which can be dealt with with oxygen or zyprexa if you cant afford imitrex. That way you wont need pain killers and please stay away from narcotics, they do more harm than good in the long term. Hang in there and painfree wishes to you. |
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Title: Re: Can't Take It really need help and Support :( Post by Charlie on Jan 15th, 2008, 11:33pm Welcome but I'm sorry you have to deal with this horror. Lots of good ideas here and here is my technique that costs absolutely nothing and brought me back many times. 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. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. 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. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments. 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. I used to try to imagine I was pushing blood away from my neck 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. Sleepinig in a recliner helped with them now and then. These things are vascular and sometimes standing on a cold floor will affect circulation too and knock the things out. Give it a shot and good luck, Charlie Charlie |
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Title: Re: Can't Take It really need help and Support :( Post by BarbaraD on Jan 17th, 2008, 8:18am Watch the Excedrin -- they can cause rebounds.... they're good in a pinch but if taken regularly can cause more harm than good. Use the Red Bull instead.... Try the water treatment - Lots and Lots of water - it's proven to be effective in a lot of cases.... Melatonin at night (takes a while to get in your system). A pred taper helps also while the prevents are getting into your system. Take the advice about the ER and get something working. O2 has proven to be the most helpful to the most of us (not all but most). It's relatively cheap (as are a lot of the prevents). Cafergot is cheaper than Imitrex and I, for one, swear by it as an abort. A lot of us are in the insurance-free boat along with you, so we DO understand that predictament also. Keep us informed. Hugs BD |
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Title: Re: Can't Take It really need help and Support :( Post by Bob_Johnson on Jan 17th, 2008, 9:01am The first and most critical question: are you working with a doc who has skill and experience working with complex headaches? If not, that is the starting point. 1. Search the OUCH site (button on left) for a list of recommended M.D.s. 2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice. 3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate. 4. http://www.achenet.org On-line screen to find a physician. 5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician. |
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Title: Re: Can't Take It really need help and Support :( Post by hotprestwich on Jan 17th, 2008, 11:20am Check out the cluster busters web-site, they have alternative ways for dealing with the devil, just make sure your in a fit state of mind before you use anything there suggesting, and detox, those pain meds may be causing you to have more attacks than normal, hope you get some rest soon, i feel like i havent slept since christmas, im going to try clusterbusters alternatives they sound like they make a difference for some pain free time, i think its better than dealing with each individual attack plus there all natural |
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Title: Re: Can't Take It really need help and Support :( Post by Gavinouch on Jan 17th, 2008, 12:51pm Chug 3 glasses of water This has worked for me about 80% of the time Sorry hun I know this is a raw deal But try to gain strength from this we know pain like no outhers----and we are still here That must count for somthing GAVIN ouch |
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