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As fella' said in his first post, there are some things you can try right now to stop an attack or at least make it so it's not so bad. Later (as soon as possible), a doctor can prescribe you some things that are will help more reliably, but for right now . . . 1. Drink down an energy shot such as 5-Hour Energy at the first sign of an attack. Don't wait -- just do it. Many people prefer them very cold. The ingredient in these that helps most is caffeine, but many people think the taurine and maybe the B vitamins also help. If you don't have an energy shot handy, try a very strong cup or more of coffee. (For a large proportion of people, taking this caffeine during the night doesn't keep them awake.) 2. Drink ice water through a straw aimed at the roof of your mouth. A lot of it. Your goal is to create "brain freeze." 3. Very hot water, however it helps you most. Some people find that standing in a tub with your feet in very hot water helps them. Some have said that alternating between the hot tub and some relatively cold room air helps. In addition . . . Some people find that it helps to deeply breathe cold air, from an air conditioner if you're inside or outside if the air is cold where you are. Some people find that vigorous exercise helps. Vigorous exercise outside in cold air can be beneficial for some. Melatonin taken at night can help. The body gets quite low in melatonin during cluster headache periods. Many start with about 9mg and some work up well into the 20-plus mg range. Some people find that their CH periods coincide with times of high pollen or other kinds of allergies. One expert recommends taking 25mg of Benadryl every 4 hours, and 50mg at night. If you do take this Benadryl dose at night, don't also take the melatonin. Two people here have said that they got benefit for stopping or reducing an attack from combining the juice of one or two limes with a teaspoon of baking powder in water, preferably bottled water. They both took this along with an energy shot. As fella' and Denny also said, the vitamin D3 regimen described in the ClusterBuster Files section of the board can help a lot, although it probably won't help immediately. See what you can do to get started with that. There are a lot of videos on youtube of people having CH attacks. Maybe your mom would be willing to watch some to see what this condition can do to people. All the things you are experiencing, from the willingness to harm yourself to make the pain go away, to the dread of when another attack will come, to the lack of understanding from people who should be more on your side, are things many people here have gone through. It's a terrible condition to have, but you can manage it so it doesn't wreck your life. You are at the worst of it now, but it will get much better. AND there are new medicines on the horizon with great promise. You have one very important thing going for you: You have what seems to be an accurate diagnosis. Most people go through years and years of misdiagnosis and mistreatment -- teeth pulled, sinus surgeries, medications that don't help, being told that there is something wrong with them mentally -- before they somehow get a correct CH diagnosis. You are on what seems like the right path to get needed treatments pretty quickly. Do read the numbered files in the ClusterBuster Files section to understand about another option, "busting," that has helped many.

I agree with Denny; definitely sounds like clusters and definitely need to see a doctor with information about CH as soon as possible. High flow oxygen will help you abort attacks and control your pain and then you can start worrying about what to do long term. I understand how you feel with your mom. I used to tell people I'd jab a syringe full of heroin in my eye if I thought it would help. That brings up an important point: opiates do not help cluster headaches. Many well-meaning doctors and people will offer them to you but I would advise you to turn them down. They aren't worth a damn for a cluster attack and you could get addicted (also, constipated). I can't tell you how many doctors whipped out the script pad and asked me if I wanted narcotics for my pain. If your mom is someone you can rely on, tell her "mom, this is kicking my ass and I need your help. I need you to: 1) help me schedule a doctor's appointment, preferably with a neurologist or neurology PA 2) help me when I have an attack to do things I need doing (like watching the baby) 3) understand that I can't control when this happens" And if your mom can't help, don't despair! Everyone here will always respond and help you. You can always improve your situation, and there are always things you can try.

Welcome to the community Melissa....sorry you needed to join us! Your last post does indeed sound like classic clusters I'm sad to say! Your priorities should be getting a confirmed diagnosis.....with the diagnosis, if the doc is worth a crap, you should be able to get a script for high flow oxygen, and read up on the vitamin D3 regimen in the files. Dallas Denny

Hi Melissa, I'm sorry this is happening to you. are your headaches spread out over your head? Or are they concentrated in one area? Where are they? what does the pain feel like, specifically? Does your nose run or your eye tear up on the side of the pain? Do your headaches tend to happen at the same time of day? We are not doctors and cannot diagnose you with cluster headaches; however, there are some tell-tale signs to look for, which is why I asked you those questions. To get a diagnosis of cluster headaches, you will need to see a neurologist. Preferably one with a headache specialty. The ClusterBusters and ClusterHeadaches.com maintain a list of medical providers that are familiar with CH. In the meantime, we have some techniques we use around here that may help you with the pain: 1) keep a large glass of ice water on you at all times with a straw and buy some 5 hour energy drinks. When you feel a headache coming on, IMMEDIATELY, drink one 5 hour energy in one go, then suck the ice water into the back of your throat on the roof of your mouth on the same side as the headache. This can sometimes abort a cluster headache attack (but it is not a guarantee). Keep sucking on that water until the headache feeling passes. If it comes back, keep sucking on it. Watch your caffeine intake when using this method 2) there is a tendon under your ear lobe on your neck. Sometimes you can ease the pain by pressing on this tendon on the CH side hard (it will hurt), and holding the pressure for a slow count of 30. 3) my go-to in a CH attack is to run an extremely hot shower. I sit in the shower, in the dark, and run the piping hot water right on my face. This sometimes eases the pain for 45 seconds at a time. It's not a solution, but can help weather the storm. For a long attack, it gets old though. Some folks around here prefer ice. There are many other treatment options available: if you have cluster headaches, the standard medical practice is to use: 1) Imitrex to abort acute attacks. 2) Verapamil long term to disrupt your cycle. 3) Steroids short-term to give your body a jolt and hopefully shake up the cycle. A doctor can tell you more about them if you like. More than anything else, the use of oxygen to abort attacks is indicated by the medical literature. You can find more information about oxygen in the ClusterBuster Files section of the forum. While you are there, read up on the Vitamin D method as well. Last, there is the ClusterBuster method, which involves taking certain psychedelic substances to stop a cluster headache cycle and prevent future ones. There are many knowledgeable people around here who can answer your questions about that should you choose it. finally, start keeping a diary of your headaches. What time are they? How bad are they? Where are they on your head? How long did they last? What made them feel better? This is important to help you plan what to do about them. again, I'm sorry this is happening to you, and I hope you find some relief soon. People here will answer your questions and you have many treatment options available. Stay positive !!!!

Hey Melissa, We know what you're gong through... and if it is cluster headache (CH)... the good news is it doesn't need to be that way. You're likely vitamin D3 and magnesium deficient and these deficiencies are contributing to the frequency, severity and duration of your headaches. See your PCP for lab test of your serum 25(OH)D. This is the serum level metabolite of vitamin D3 that's used to measure its status. The normal reference range for this lab test is 30 to 100 ng/mL. Data from the online survey of 215 CHers taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 indicate they had a mean baseline 25(OH)D serum concentration before start of regimen of 23 ng/mL. As a CHer, we need our 25(OH)D serum concentration in a range between 80 and 120 ng/mL in order to remain CH pain free. Download a copy of the anti-inflammatory regimen CH preventative treatment protocol from the following VitaminDWiki link and take a copy with you when you see your PCP for the 25(OH)D lab test. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and please keep us posted. V/R, Batch

It can be frustrating to try to get a CH diagnosis, as I've said. Most doctors just aren't familiar with CH. If your doctor insists on treating you for migraines, that isn't completely bad news. Two standard treatments for migraine are also treatments for CH. One is a preventive, verapamil. It probably won't help you much in the beginning, unfortunately, because it has to be started at low levels and monitored for its effects on your heart. But it might help. An abortive often prescribed for migraine is sumatriptan (Imitrex/Imigram). This also works to stop CH attacks. BUT the most helpful kind for CH is injectable sumatriptan. That's what you want. At the very least, you want the sumatriptan nasal spray, which helps most people with CH. Pills will probably not help you. I just don't know whether a steroid taper is a migraine prescription. With CH, people often go on a steroid taper of about ten days or two weeks at the beginning of their treatment, at the same time as they start verapamil. Usually the steroids eliminate or reduce the pain while they are being taken -- and that gives more time for the verapamil to take effect as a preventive. Your doctor might typically prescribe other things for migraine. If you can, you should try to get those migraine meds I just mentioned prescribed if your doctor insists on a migraine diagnosis. The bad thing about being treated for migraines instead of CH is that oxygen, which is a very effective abortive for CH attacks and has the added benefit of not having the side effects associated with the other medications I have mentioned, is not prescribed for migraine. You should come as close as you can to begging for an oxygen (O2) prescription because it's the thing you want most. Your doctor has probably never written a prescription for O2 for a "headache" condition. I can tell you that the prescription should read something like this: "Oxygen therapy for cluster headache. 12-15 lpm for 15 minutes. Non-rebreather mask." (A doctor might use abbreviations for some of things.)

Wow Melissa...we really are sorry you need to be here...but you sure found the right place. Been doing this dance for over 35 yrs and the series of replies you got were as BRILLIANT as I've ever seen...starting with an awesome post from "fella"...................MY OH MY! My salvation was a forum like this (talkin to folks who KNOW...and will not tell you it's all in your head (even tho ironically it IS....sorry ch humor)), OXYGEN OXYGEN OXYGEN, verapamil on occasion, energy drinks, Zomig nasal spray (5 mg) for the breakthroughs)...which probably are contraindicated for a nursing mother...but keep in mind for later.....much less weird side effects (for me) than imitrex, AND the D3 regimen which Batch has developed and is cheap, easy, no script required, beneficial to overall health, and highly successful for a number of folks. Best Jon

To the best of my recollection, we have only had one other nursing mother here. She was permitted to use oxygen and verapamil. She was probably already using oxygen, which would have made it easier than trying to get a new oxygen prescription from a doctor who already doesn't know very much. I don't know what it was about verapamil that made it permissible to her doctor. The Facebook group "Cluster headaches" has quite an active membership (it was founded by some folks from here). You might be able to get some answers there about nursing mothers and meds. It's a closed group, so you have to ask to be accepted, but usually that doesn't take very long. Be sure you go to that group (there's a photo of three smiling people at the top of the page). There are several CH-related groups at FB, and some are a little fishy.

Nothing to add to fella's great post, except two questions: How long do your attacks last; and are you able to sit or lay still during them, or do you feel agitated and have to move around (or rock back and forth)? Mostly, I wanted you to know that there are many of us here ready to do our best to help you.