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Cluster Headaches–Questions

Question:

Well, they aren’t 2mg vials. The vials still come with a 6mg dose inside (0.5ML) but you can then choose to only use 2mg at a time.(1/3 of the contents of the vial) (BTW, the 6mg dose is presumed to be the best "migraine" treatment dose. I have no idea if less of a dose works for migraines) I would think your doc can write the script for you for the vials rather than the stat-dose injectors. He may not even know about them. You may want to call your pharmacy ahead of time to see if they stock them or they have to be ordered from their glaxo supplier. Also may depend upon your insurance, if you have it. I wouldn’t necessarily let the insurance co know you’ll be getting 3 for one on the doses. They may want to cut your allowed amount by 66%. 6mg is the standard dose and they probably allow you a set number of doses per month, not a set number of MG’s. You can check Glaxo’s website. I imagine they may have some more info on the vials. If you don’t have insurance, you may also want to check out their site with regard to special rates for assistance. Here is one site if you order online… http://www.drugstore.com/qxn00173044902_333181_sespider/imitrex/imitr… On a side note, if imitrex injections are getting you down, or if they seem to be making your clusters come more often, more intensly or making your cycles last longer than they used to, pre-imitrex, you may want to check out the following shameless plug… www.clusterbusters.com good luck Dennis, BobW

– Hide quoted text — Show quoted text – … If you get a script for imitrex, ask for the vials instead of the auto-injector. That has 6mg of imitrex and most clusterers only need about 2mg to do the trick. Saves a lot of money and uses a lot less of the drug, which is a good thing. I can find no reference to 2mg vials of Imitrex for injections, only the 6mg injectors.  Can you supply one? Dennis

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Here is a recent Lyme/Migraine article: http://msnbc.msn.com/id/5706979

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… If you get a script for imitrex, ask for the vials instead of the auto-injector. That has 6mg of imitrex and most clusterers only need about 2mg to do the trick. Saves a lot of money and uses a lot less of the drug, which is a good thing.

I can find no reference to 2mg vials of Imitrex for injections, only the 6mg injectors.  Can you supply one? Dennis

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I used to take Midrin years ago.

Well, that’s pretty useless against clusters. I know it was prescribed quite a bit a long time ago when it first came out, for clusters and other headache types. Sort of like Neurontin was after that. I do have some Maxalt samples that I am trying. But for me things to take within onset is difficult since I wake up with a headache.

Typical problem with clusters. Some people take their triptans before they go to sleep or set their alarm for about an hour before the expected arrival time of the attack. At this time, I go to my hematologist (my lyme dr) and he pretty much knocks me out.

Hope it’s not with a punch in the nose. If so, I’d see someone else. ;-) Try the Over-the-counter 5-hydroxy triptophane (5-HTP) Do not take within 12 hours of a triptan. Is this carried at a pharmacy? Never heard of it.

Should be able to find it at the pharmacy, Walgreens, CVS etc. BobW

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Hi Kara, Hadn’t heard of any Lyme Disease/cluster connections. hmmm. Maybe I’ll have to research a little on the subject to see how they might effect one another.

There is… as a symptom of Lyme. But I am the first person (that I know of) who actually had headaches stop when I was infected. Other things worth mentioning off the top of my head. Since I don’t know what you’ve used in the past to treat your clusters. feel free to post or write to me.

I used to take Midrin years ago. I do have some Maxalt samples that I am trying. But for me things to take within onset is difficult since I wake up with a headache. At this time, I go to my hematologist (my lyme dr) and he pretty much knocks me out. Try the Over-the-counter 5-hydroxy triptophane (5-HTP) Do not take within 12 hours of a triptan.

Is this carried at a pharmacy? Never heard of it. Some of the following might help during an attack… Ice, cold water, cold air — Clusterheads have thousands of preferred methods of using cold to help ease attacks: Ice packs, cold towels, sticking your head in the freezer, standing with a cold shower blasting on your head, pressing your eye against air-conditioning ducts, going out in subfreezing weather in your pajamas…

doing a headstand… BTW, the percentages of men vs. women with clusters seems to be changing all the time. It used to be about 8:1 but I’ve seen many reports of late stating its really only 2:1

Yeah. Statistics dont tell the whole story. We go through this all the time with Lyme. Kara

Response:

Hi Kara, Hadn’t heard of any Lyme Disease/cluster connections. hmmm. Maybe I’ll have to research a little on the subject to see how they might effect one another. As far as whats new in the last 4-5 years….not a whole heck of a lot that helps much. Other than the link Kadee gave you which discusses a new treatment that has had such good results that there will soon be clinical trials at Harvard Medical School. Step one in a long process. Other things worth mentioning off the top of my head. Since I don’t know what you’ve used in the past to treat your clusters. feel free to post or write to me. about the best abortive around IMHO would be pure oxygen dispensed at a flow rate of 10-12lpm with a non-rebreather mask. Works for the majority of people within 10-20 minutes to stop an attack. Cut the strap off of the mask so if you fall asleep, you won’t damage your lungs by breathing it too long. You need a prescription and unles you’re seeing a headache specialist, he may not want to write one. Press the issue if need be. If you need data to show him/he, let me know. Verapamil is about the least caustic prescription drug used to treat clusters. Not too many side effects and many people get good results once they get up to a therapeitic level. This level may need to be as high as 800-900mg a day. If a 240 Slow Release dose doesn’t give you any positive effects, try increasing….everyone is different. opiods in pill form are of little or no help and may make things worse over time. Stadol spray (or injection if you end up in an ER) can help but isn’t offered very often. Ergotamines are often helpful. Imitrex (injections work the fastest and there is a spray version) and the other triptans are probably the newest source of relief for cluster people but they’ve been around for a while. Are quite effective for many but you just can’t take 4 or 5 shots of it each day if you get that many attacks. There is also new research that is beginning to lead everyone to believe that the triptans will make matters worse over time. Turn episodic cases into chronic cases. Turn 2 attacks a day into 5 attacks a day. Look for more research on this as time goes on. If you get a script for imitrex, ask for the vials instead of the auto-injector. That has 6mg of imitrex and most clusterers only need about 2mg to do the trick. Saves a lot of money and uses a lot less of the drug, which is a good thing. Topamax is a newer treatment for clusters (and migraines. I heard it was just approved AS a migraine treatment, officially). It has some nasty side effects for some people. If you start it, be sure to very slowly increase the dose to a level that helps. Some have to start as low as 25mg a day. If you get your first script of it and it says 200mg a day to start….be VERY careful. I’d go onto the following asap in hopes that some of the following helps control the cycle somewhat…. magnesium Studies vary but most people that have reported that 400mg per day shows positive results. If you decide to stay on the magnesium for an extended period (month(s) you should consider adding calcium along with the magnesium. This will conteract some of the side effects of magnesium and will add calcium back into your system. Magnesium is a calcium blocker and adding calcium will help keep your levels where they should be. Again, studies and theories differ but it’s suggested that you add between an equal amount (400mg) of calcium and double the amount.(800mg) Teri R. may be able to lend a little more info on this (and probably all) of this subject(s) More Info: "Magnesium Oxide: It has been shown that magnesium levels are low in the brain of migraine patients. 400 or 500 mg. per day as a preventive; however, GI side effects may limit use. Mag Ox (400 mg.) is a good brand that is well absorbed. 250 mg. tablets are found in most pharmacies. " Even MORE Info: Contraindications and Precautions Caution is advised when considering Mg with other medications that may impair Mg absorption, thus decreasing its effects. These drugs include allopurinol, tetracycline, digoxin, iron salts, penicillamine, and phenothiazines. Mg supplementation is safe during pregnancy, but it should be started in consultation with and under the supervision of the patient’s obstetrician. Unless it is severe, diarrhea that is not induced by Mg supplements is not a contraindication to Mg supplementation. Patients with renal disease should avoid magnesium supplementation. Long term consumption of magnesium may require the addition of calcium to your diet to remain within a healthy balance. Calcium channel blockers, sometimes used for cluster headache prevention, can cause additional problems in acheiving a balance. Consult your physician. Add Vitamin B2 to your diet. Adding between 200 and 400mg per day of Vitamin B2 has shown some good results in cutting down the frequency and the intensity of clusters for some people. Some people have had positive results adding Melatonin to their diet. One study showed very good results when 9mg of Melatonin was added at bedtime. This dose is high for some people as they have side effects such as being very tired all day. You may want to try 1mg to start and build up to where you see some positive results without the side effects being too uncomfortable. Some people have reported using up to 12mg at bedtime. More Info: In one study, 10 mg of melatonin was administered to half of 20 cluster-headache patients in a double-blind controlled study that lasted 14 days. Headache frequency was significantly reduced in the melatonin treatment group. Five of 10 people in the melatonin group reported that their attack frequency declined after only 30-35 days of treatment. No patient in the placebo group responded." Caphalalgia (Vol 16, Issue 7 1996) Additional studies have shown similar results. Try the Over-the-counter 5-hydroxy triptophane (5-HTP) Do not take within 12 hours of a triptan. Some of the following might help during an attack… Ice, cold water, cold air — Clusterheads have thousands of preferred methods of using cold to help ease attacks: Ice packs, cold towels, sticking your head in the freezer, standing with a cold shower blasting on your head, pressing your eye against air-conditioning ducts, going out in subfreezing weather in your pajamas… Heat — On the other hand, some cluseterhead need heat. Hot packs, hot towels, hot showers, heating ducts…but please don’t stick your head in the oven. Water — Instead of pouring cold water over your head, you can try drinking it. Some have successfully broken cycles by drinking large amounts of water throughout the day. Drink at least X….. This writer swears he has aborted two out of three attacks by drinking at least a quart of cold water in two minutes at the first sign of an attack. Drinking large amounts of water over time may deplete vitamins and minerals, and supplements may be needed. Exercise – Some have reported that 10 to 20 minutes of intense aerobic exercise can abort an attack. Clusterheads have been seen sprinting around the block in otherwise respectable neighborhoods in the middle of the night. Carry identification; you may meet the police. An exercise bike will do the trick, but you have to pedal hard… Caffeine Straight caffeine in the order of 150-200mg (two cups of strong coffee) has been reported to help with the cluster pain within 20 minutes. It may be caffeine’s effect on nerves and not blood vessels that explains its usefulness with headaches. Lidocaine application This treatment was first discovered by Lee Kudrow, MD. Still remains a very good treatment for many, and is probably the least expensive "prescribed" treatment you can find. Use 4% topical Lidocaine HCL, Brand name Xylocaine (Astra), also available as a generic from many manufacturers (Roxane). It is OLD, NOT compoundable, (as it is a "single, diluted chemical) and cheap–approx. $20/50cc, but some pharmacies make a big deal about it and charge outlandishly. It is off-the-shelf (not OTC), andcan be ordered easily by ANY U.S. pharmacy. It should cost about $.05/treatment. Do NOT use Lidocaine with epinephrine added,(which is what most dentists use for local anesthesia). Use a nose dropper, preferably graduated, and draw up .5ml or .5 cc or 20 mg. (all the same thing if it’s 4%). Dose is NOT that critical, but administration technique is! An older method using cotton-tipped swabs soaked in lidocaine is no longer used. Lie supine (on your back) on a bed or bench with your head "hanging off the end", and lowered about 60 degrees from the horizontal. Tilt head about 30 degrees TOWARD side of pain. Insert dropper with lidocaine "in it" in the nostril on the side of the pain until it is "comfortable"–not a critical distance. VERY SLOWLY, squeeze dropper bulb and instill lidocaine so that it "pools" at the back of the nasal passage (which is the WHOLE idea) and doesn’t go down throat. Try to take about 1 minute to instill the .5cc and then stay in that position for 1 additional minute. Get up slowly. 4% Lidocaine is somewhat bitter and, some may run down your throat or out your nostril when you arise. It "numbs" any mucosal surface it come in contact with, so do not eat or drink for 30 minutes as you may have a transient swallowing problem. You may also feel numbness in your nose, or some localized burning sensations, and you may also feel numbness along the second branch of the trigeminal nerve including the upper teeth, gums and tongue on the side of instillation. All of these side-effects should go away within about 30 minutes. This may be repeated in 2 hours, and, although the amount of Lidocaine used is small by comparison to its other medical uses, the safety window for repeating this treatment has NOT been established. Massage Therapy This may help relax the muscles in the neck and shoulders and may help keep the cluster activity in check a little. This isn’t going … read more »

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I used to have cluster headaches and then they went away when I was infected with Lyme Disease. So I did have some relief for 4 1/2 years. Now that I am rid of the Lyme, they are back (I am ok having the headaches back). I am sure things have changed a great deal in this area in the last 5 years or so. If anyone could fill me in on new drugs, ect. in the area of cluster headaches it would be much appreciated. I usually wake up with a headache if I am going to have one. I have always heard that more men have them (I must have gotten them from my dad). Thanks in advance, Kara Tyson Lyme Disease Support Group of AL Director

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