CLUSTER HEADACHE FAQ FOR: USENET NEWSGROUP ALT.SUPPORT.HEADACHES.MIGRAINE Section IV of IV, Headache FAQ's VERSION 2.0 Part 2 of 4 Version 2.0 Written/collated by Bob Wold Feb/12/00 Rwold42932@aol.com Some sections Edited by Jack Sandweiss, Research Associate, California Medical Clinic for Headache, Encino, CA All rights reserved and copywrited If you post this to the WWW or Usenet, please inform the author, for the purpose of receiving updated versions in the future. Contents, part 2 of 4 5. Triggers reported 6. Responsive Treatments 7. Preventative Treatments 5. WHAT ARE POSSIBLE TRIGGERS During a series, minimal amounts of some substances can precipitate an attack. During the cycle, the sufferer's blood vessels seem to change and become susceptible to the actions of these triggers. Substances that cause blood vessel swelling, such as nitroglycerin or histamine, can provoke an acute attack during a series. The blood vessels are not sensitive to these substances during headache-free periods, as is the case with some migraine headaches. 5.1 Alcohol Due to the body's physiological response to alcohol, (dilation of blood vessels, in particular in the brain for cluster sufferers) it is a major trigger during a cluster period. During the remission period, alcohol is not reported to trigger attacks. Clear alcohol (Vodka, Gin etc.) has been reported to have a reduced effect towards triggering attacks, although *still* a trigger. 5.2 Other Foods Monosodium Glutamate (MSG) is not a widely reported trigger, but for some sufferers it has proved beneficial to avoid MSG during cluster periods. The physiological reason behind this is unclear, although MSG dilates blood vessels in a similar fashion to alcohol. Sufferers have also reported that cheese, or particular types of cheese are both headache triggers within a cluster period, and cause a cluster period to return prematurely. 5.3 Stress and Strain Many sufferers report that both emotional and physical stress can be triggers. Study and/or work related stress may be a factor, along with neck/back injuries being "stressed", such as bad posture with working with computers, or sitting in bad chairs etc. As much as many of us (headache sufferers) hate to admit it, stress "does" *sometimes* have an adverse effect. I know that we have all heard the comment, "If you'd only *relax*, all your headaches would go away," and this is the reason we are sometimes so sensitive on the subject. Of course it's not "that" easy and it's pretty much impossible to explain, but, we must admit at least to ourselves that this "may" be at the very least, a possible trigger at times. If not to start a singular attack, maybe to start a cycle? Maybe to make each attack a little more intense? 5.4 Change in Sleep Pattern Related is the "weekend" clusters, due to relaxing, sleeping in, or generally trying to enjoy yourself. Either sleeping in late or staying awake for an extended period of time *may* precipitate either additional attacks or trigger a new cycle. This may have more to do with the "relaxation" involved, as well as the REM sleep connection. 5.5 Physical Activity / Exertion Working outside in the sun/heat often triggers an attack for many people. Is it the heat? The sunlight? The physical exertion? A good excuse for not cutting the grass? You'd have a ask a doctor ;-) 5.6 Altitude / Pressure Changes Both airplane rides and slower changes such as driving through the mountains seemed to reportedly cause attacks. 5.7 Other Medications "I have had two cycles triggered when taking muscle relaxers for pulled muscles in my back." Having a "bad back" has left me many times with the problem of having to decide if I was going to chance starting a cycle by taking muscle relaxers to help my back. I ended up using rest, a chiropractor, pain killers and herbal supplements rather than chancing a new cycle. 6. RESPONSIVE TREATMENTS (i.e. after the headache has started) 6. 1 Imitrex® (Sumatriptan) ("Triptan") This appears to be a commonly prescribed drug these days. It has been widely available around the world for several years. It is still fairly expensive, and is not recommend to patients with ischemic heart disease. (Few fatalities have been reported when taken by people with heart conditions, as it constricts blood vessels.) Imitrex takes about 10 minutes to enter the blood stream (hence limited use if cluster headache is not caught quickly enough) and has a ~2 hour half life. The injectable form (6mg dose) is available at even greater cost, though the response time might make it worthwhile. Patients are advised to lie down for 20 minutes or so after an injection and let the "rush" pass them by! It is reported that the injection stops an attack, with sufferers possibly following up with a tablet. Imitrex is available in nasal spray form and this delivery system seems to fit very well as a cluster treatment as it works very quickly and does not necessitate injections on a constant basis. It's hard enough just "seeing," let alone fixing a syringe and stabbing yourself with a needle in the middle of an attack. There are some concerns about the long term side effects of Imitrex/Sumatriptan, presumably due to the blood pressure elevation. The other limiting factor in its use for clusters is whether or not you can use it to treat all of your episodes. If you are experiencing 8 attacks per day, this may not be for you. It may help though to be able to use it on some of the attacks and other medications for others. Alternating medications has been successful for me in several areas. ( See "Tips" ) 6.2 Amerge® ("Triptan") Naratriptan Another of the newer "Triptan" alternatives. Generic forms of the "triptns" are not yet available, and won't be for years to come. The differences between the available triptans is in rapidity and length of, service in your system. As with all the triptans, there is a long list of possible side effects, other drug interactions and warnings. Be sure to go through your entire medical history with your doctor before using this or any of the triptans. 6.2.1 What should my health care professional know before I take Naratriptan? They need to know if you have any if these conditions: Diabetes, family history of heart disease, heart or blood vessel disease, or previous heart attack, high blood pressure, high cholesterol, tobacco smoker, transient ischemic attacks (TIAs) or previous stroke, AND a whole bunch of other things!!!! Naratriptan tablets are taken by mouth, after the attack starts. It is not for everyday use. 6.2.2 What other medicines can interact with Naratriptan? (and other "triptans") -Dihydroergotamine, Ergotamine, Methysergide, or ergot-type medication - do not take within 24 hours of taking Naratriptan. -Sumatriptan, Rizatriptan, Zolmitriptan - do not take within 24 hours of Naratriptan. -antidepressant medication such as Paroxetine, Fluoxetine, Sertraline, Fluvoxamine, Citalopram 6.3 Zomig® ("Triptan") ZOLMITRIPTAN (Zomig®) Generic Zolmitriptan tablets are not yet available. See the information on the above listed "triptans" and follow all warnings. Although this drug is not suggested to be used every day, there have been studies done on the use of Zomig on an every day basis as a preventative for clusters and other headaches. Results are still out on whether or not it's effective as this type of treatment. My understanding is that the side effects have been rather discouraging for everyday use. 6.4 Maxalt® ("Triptan") "RIZATRIPTAN" is taken at the first symptoms of an attack; it is not for everyday use. See all other info regarding "triptans", above. 6.5 Cafergot (Ergotamine with Caffeine) This is normally a migraine treatment, though is useful in treating cluster attacks. Again ingestion time is a factor, there may be some side effects (from the caffeine) and its use is limited to the number of tablets taken (4 per 24 hours or 10 in 7 days is not uncommon). 6.6 Caffeine Straight caffeine in the order of 150-200mg (two cups of strong coffee) was reported to help with the cluster pain within 20 minutes. The person mentioned that Cafergot doesn't do anything the caffeine didn't. Caffeine is also known to aid in speeding the delivery of other medications into the bloodstream and may offer quicker relief which is essential for cluster sufferers. It may be caffeine's effect on nerves and not blood vessels that explains its usefulness with headaches. 6.7 Oxygen Breathing 100% oxygen at the start of an attack is known to abort an attack fully in many cases. It is a common treatment and very often the first one suggested by a knowledgeable physician. 02 concentrators can be rented. Also available in different sizes of tanks, some portable. The protocol for O2 usage is very important for best results. Flow rate, timing and length of use must be controlled. Sit with your face facing the floor, use a mask, and breath "normally." Face should be parallel to the floor. "Oxygen 8 to 10 liters with a face mask will reduce the severity of a cluster. Use it diligently...Am amazed, but it does work." - (SB) "I had initial success, was administering it properly, and it stopped working after about 9 months." This is said to be very rare. [ The fact that it stopped working ] If O2 works for you, odds are that it will continue to work and not become useless, as many medications do, over time. Be careful of the "flow rates" and length of time breathing the 02. Too much can lead to lung damage. In other words, don't borrow your brother's welding tank, without a meter, and leave it on for 4 hours!! ( Welding tanks do not contain U.S. P. grade 02 which means it may not be as clean as need be to meet medical standards for use) 6.8 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), and can 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. "Close" to the rear of the nasal passages lies the Sphenopalatine (Pterygopalatine) ganglion (a group of nerve cell bodies), and it is the absorption into this area which is "believed" responsible for its action. This is a large ganglion, and very complicated anatomical area, which is also near the "second" branch of the fifth (trigeminal) nerve, however it's the affect of lidocaine on the 7th (facial) nerve which courses through this area which is thought to be relevant in this instance. A temporary, chemical nerve block may be the reason for efficacy. Thank you to Jack Sandweiss 6.9 DHE 45 Nasal Spray Migranal® (Dihydroergotamine) Was previously only available from compounding pharmacies. Comes in metered sprays using one-dose ampules. You may still be able to get it from compounding pharmacies. In that case, it comes in a metered spray bottle. The problem had been shelf life. "Very effective for me but have heard that it was much less effective for others. Worked better for me as the pain level of the attacks was lowered by other preventatives. Was less effective during full-blown #10 attacks but still gave good relief and enabled me to get through an attack." "A dose-related response should be mentioned. If one spray doesn't do a thing, two might do the job. Caffeine taken with DHE will make it more effective, as is the case with Ergotamine."(JDD) 6.10 DHE - 45 Injections ( Dihydroergotamine) This medication works by mimicking the effects of serotonin and to a lesser extent, by directly reducing the size of the blood vessels. 6.11 Thorazine® Generic Name: Chlorpromazine HCl Thorazine injections are used to abort clusters. You will also find this medication listed as a preventative medication. 6.12 INAPSINE® INJECTIONS ( Droperidol ) Drug Class: Phenothiazines Others in this class include: Sparine,Compazine,Phenergan and Thorazine Inapsine is a neuroleptic ( tranquilizer) agent available in ampoules and is for intravenous or intramuscular use only. The exact mechanism of phenothiazines in headache relief is not completely understood but is believed to be because of effects on neurotransmitters. Besides effective headache pain relief, phenothiazines can also relieve nausea/vomiting. Phenothiazines have the potential to cause drowsiness, low blood pressure and tremors. 7. PREVENTIVE TREATMENT Episodic Cluster Headaches should be treated with prophylactic treatments as early as possible in the series in order to decrease the length of the cluster period as well as decrease the severity of the headaches. These treatments will also help in preventing or reducing the number of attacks within a given cluster period, and/or lengthen the time between cluster periods. With certain drugs (such as most antiepileptics, lithium etc.) the concentration in the blood required for a therapeutic effect is close to that which produces toxic effects. Therefore the amount of the drug in your body should be measured to ensure you receive appropriate doses. In these cases it is essential that you undergo regular testing to reduce risk associated with the use of such drugs. Be sure to ask your doctor regarding this issue whenever you are prescribed new medications. 7. 1 Verapamil® (Calan®, Isoptin®, Verelan®, Covera®) - a calcium channel blocker. Calcium channel blockers, similar to beta-blockers, help to stabilize blood vessels. Often prescribed in the SR (Slow Release) form Is the first line of defense for many physicians. Often used in conjunction with additional preventative measures. Side Effects: tiredness, dizziness, nausea, Atrioventricular heart block "Verapamil seemed to help the first [cluster period], but was useless the second." -(RP) 7.2 Lithium Carbonate (Eskalith®, Lithobid®) A new study revealed that Lithium is indeed efficacious and reasonably well tolerated for episodic cluster headache. It's use has been round for years for clusters. "Lithium carbonate 300 mg bid or tid can help avert or at least decrease frequency" (MS) "After being on lithium for two and a half weeks, reaching a dose of 600 mg, I had about a 50% reduction in cluster headache pain. Then I said I was going to 900 mg to try to reduce the headaches even further. I've been on 900 mg for two weeks and nothing happened! No side effects and no change in headache frequency or severity."(RVZ) 7.3 Tegretol® Drug class: Anticonvulsant I was up to 400mg per day. It was instrumental in breaking my chronic cluster stage. Blood tests must be taken on a regular basis to test for Tegretol levels to measure for therapeutic levels without exceeding a safe amount in the system. 7.4 Methysergide Methysergide 1 mg (as maleate). Sansert® Indications: prevention of severe recurrent migraine and cluster headache in patients who are refractory to other treatment and whose lives are seriously disrupted. This is a highly effective drug which is not often used because of its side effects. Cautions: history of peptic ulceration; avoid abrupt withdrawal of treatment; after 6 months withdraw for reassessment for at least 1 month prior to reintroducing the medication. Following the "vacation," an IVP test (Xrays with a contrast media) should be taken as a precaution. Some leading headache experts do not feel that testing every 6 months is enough to catch a possible problem with the fibrosis, which can not be reversed once damage has occurred. Side-effects: nausea, vomiting, heartburn, abdominal discomfort, drowsiness and dizziness occur frequently in initial treatment; psychic reactions, insomnia, edema, weight gain, rashes, loss of scalp hair, cramps, arterial spasm, paraesthesias of extremities, postural hypotension, and tachycardia also occur. Retroperitoneal and other abnormal fibrotic reactions may occur on prolonged administration, requiring immediate withdrawal of treatment "I took sansert for a three year period, with the necessary off- periods, and had fairly good results. It didn't break the cycle, but reduced the frequency and pain levels. It stopped being effective following one of my "30 day off" periods, and never regained effectiveness." It should be noted that Sansert is a derivative of Ergotamine and this should be taken into account when using Sansert as a preventative and using other medications, such as the newer "Triptan" class of drugs, to abort a headache. Always be aware of possible drug interactions. 7.5 Neurotransmitter modulators Besides serotonin and norepinephrine, other neurotransmitters may be involved in causing headaches. Medications that help properly regulate these other neurotransmitters can then sometimes help in headache relief. These drugs include the following. 7.5.1 Depakote® (Valproic Acid, Divalproex Sodium) Drug class: Anticonvulsant "I've been on Depakote 1000 mg for three weeks and it's working great. I quit using caffeine and have never used NSAIDS or other pain medications for my chronic cluster headaches. I haven't had any side-effects and have been getting weekly blood tests as a precaution."(RVZ) (from post by L.D.Sitwell) "The hepatitis syndrome can occur in infants given this drug, but adults are rarely affected in this way. I have prescribed it for migraine hundreds of times and it has never led to this complication. The most prominent side effects are weight gain, stomach upset and tremor." Also, vertigo, weakness, fatigue. You should have frequent liver function tests run. "Several recent studies demonstrated again that sodium Valproate (Depakote) is safe and effective in the long-term treatment of migraine and chronic daily headache." ( Dr. L. Robbins) 7.5.2 TOPAMAX® Generic: Topiramate Drug class: Anticonvulsant This is the latest in this class that has shown some promise and is being used by the some of the leading specialists, at the time of this writing, on the more difficult cases...( thats us!! ) Possible Side effects: Drowsiness, dizziness, constipation, loss of coordination, numbness and tingling, tremor, change in speech, or loss in concentration. Abdominal pain, weight loss, vision changes, memory problems, agitation, depression, or mood changes. 7.5.3 Neurontin® ( Gabapentin) Drug Class: Anticonvulsant Normally used to treat seizures associated with epilepsy. Possible side effects include tiredness, drowsiness, dizziness, tremor and upset stomach. Decreased coordination, changes in vision, memory loss or trouble speaking. 7.6 Thorazine® Generic Name: Chlorpromazine HCl I have used Thorazine at night and have found some good results for being able to sleep through the night without getting a cluster attack. It has also been given to me by injection along with Stadol as an abortive in an ER, with very good results. 7.7 Doxepin (Sinequan®) Doxepin hydrochloride, is one of a class of psychotherapeutic agents known as Dibenzoxepin Tricyclic compounds. There are many medications in this class that are tried and sometimes effective in treating clusters. These drugs alter the amount of serotonin sand norepinephrine available for your body to use. Additionally, they can stop the effects of histamine which can result in the swelling of blood vessels and contribute to the pain, at least according to some theories. Due to the sedative effects of this medication and others in the same class, they are often used as a nighttime treatment to help guard against the "REM sleep" induced clusters. 7.8 Methergine® "Similar" to Sansert but in a "milder" form that is used so as to avoid some of the nasty side effects that come with Sansert. Once again, it should be noted that this is a derivative of Ergotamine and this should be taken into account when using Methergine as a preventative and using other medications to abort a headache. Always be aware of possible drug interactions. 7.9 Ergotamine® (Ergotamine Tartrate) Daily doses of Ergotamine Tartrate can be taken preventatively during the cluster period. Ergotamine does not seem to cause a rebound headache with daily use for cluster, as it can for migraine sufferers who overuse it, according to ACHE. Ergotamine suppositories at bedtime can be used to prevent nighttime attacks. The sublingual form of Ergotamine tartrate is absorbed rapidly and is another option. 7.10 SSRI's ( Selective Serotonin Reuptake Inhibitors ) 7.1 Fluoxetine (Prozac®) 7.2 Paroxetine (Paxil®) 7.3 Setraline (Zoloft®) 7.4 Citalopram (Celexa®) These drugs increase the amounts of serotonin available for your body to use. Potential side effects include drowsiness, constipation, insomnia, upset stomach, tremor and sexual dysfunction.