New drug for cluster headaches

Chronic cluster sufferers may benefit from sodium oxybate (Xyrem), according to a report in the leading neurology journal,Neurology. Xyrem is a drug approved for the treatment of narcolepsy but it is also being evaluated for the treatment of pain of fibromyalgia, chronic fatigue, and other conditions. It is well established that patients with cluster headaches often suffer from sleep disorders and cluster attacks often wake patients from sound sleep in the middle of the night. It is logical to consider drugs that affect sleep in the treatment of cluster headaches. However, traditional sleeping medications do not help cluster sufferers. Approximately 10% of patients with cluster headaches suffer from chronic clusters, which means that they have headaches for years without a break, while the other 90% have cluster periods lasting a few weeks to a few months every year or every several years. The article in Neurology describes 4 patients with chronic clusters who were treated with Xyrem with excellent long-term results. In one patient relief lasted 8 months while in the other three for up to two years. Side effects consisted mostly of dizziness, some memory difficulties, vomiting, and weight loss, however they were not severe enough to stop taking this medication. Xyrem is a controlled drug with potential for abuse and is dispensed only through a single centralized pharmacy.

  1. HC Holbert says: 08/22/20142:34 am

    I am 56yo and have sufferered from CCH for over 35 years in 1992 I had a stroke the verapamil caused CHF and imitrex sumitriptan caused heart attack and the steroids messed heart up even more. I am currently on 60mg ms sr every 12 hrs during cycle,oxygen and cannabis enables which help me eat,sleep and stay as calm as possible as I refuse to take xanax etc,I even tried the neuro stimulator but it didnt help at all. CCH stole my life and ruined my physique. I am a 56 yo train wreck that without my loving and understanding wife of 36 years would have killed myself long ago

  2. Dr. Mauskop says: 03/22/20138:20 am

    Kyle, you should ask your neurologist about Botox injections, and if those don’t help, about getting vagus nerve stimulator implanted. I’ve had two patients with cluster headaches as bad as yours who failed every drug I could think of, including high dose verapamil, prednisone, and Botox injections who responded to vagus nerve stimulation (VNS). Here is a link to the article for your doctor. Admittedly, it is only two patients (I also had two out of four patients with severe chronic migraines respond to VNS), but the stimulator is FDA approved for epilepsy and depression, when those fail to respond to drugs, so it makes it easier to get insurance to pay for it. And here is my post about a sphenopalatine ganglion stimulator device developed in Europe. The very last resort treatment that has been used extensively in Italy, but it also available in the US is deep brain stimulation.

  3. kyle morgan says: 03/21/201311:33 pm

    I have been to Mayo Clinic,-all 3 of them, along with 24 other “Special/top-rated” hospitals and clinics for HELP with chronic cluster headaches. i have seriously thought of suicide many, many times because the pain is SO VERY BAD. People, the internet is full of lies and CRAP! Prednisone, 80 mg per day and EXTREME HIGH DOSES of verapamil are the ONLY treatment for clusters that works–and the prednisone side effects are pure and total hell! 14 years, 5 months EVERY year, 8 to 10 cluster headaches per day–I KNOW this stuff front to back, and there is NO GOOD TREATMENT out there, period! Imitrex stops them–the injection, and ONLY take 2.5 units of the 5 units prescribed or they will rebound and FAST. That’s the sad news, folks. If these pharmacies and doctors don’t come up with something soon to help cluster headache sufferers, I am sure many of you will do what I plan to SOON—blow your brains out with the .357 mag I have already loaded. Goodbye.

  4. Dr. Mauskop says: 01/16/20137:21 pm

    Oxygen helps about 60% of cluster headache sufferers. It is very important to use 100% oxygen through a mask and at a rate of 10-15 liters per minute. The headache usually subsides within 5 to 10 minutes.

  5. bronwyn hawkes says: 01/15/201311:57 am

    How effective is oxygen in the treatment of cluster headaches. Any advice would be appreciated.

  6. Dr. Mauskop says: 01/05/201310:50 am

    Have you tried Botox?

  7. Annie says: 01/05/201310:39 am

    I started getting Clusters when I was 18, at that time they came once every 9 months or so. In 2001 I became incapacitated and unable to work due to the frequency. In 2002 I went to the Diamond Headache Clinic in Chicago and got
    the Histamine drip; it was not effective at all. The last couple of years have gotten worse and in the last couple of weeks, they’ve hit once or twice a day
    (level 10). I am 55 and desparate for something that works; my quality of life
    is miserable and I call my bedroom my ‘living room’. I have tried all the above mentioned drugs; the Imitrex worked for two years, then quit. Any Ideas, I’d sure appreciate….

  8. Dr. Mauskop says: 12/29/201212:13 am

    I cannot give anyone I haven’t seen specific advice, but can suggest checking with your doctor that you’ve tried increasing the dose of verapamil to 480 mg, 720 mg, and even higher, unless you had side effects (the most common are constipation and leg swelling). You also need to have an EKG (electro-cardiogram) before each increase of the dose. Botox injections are approved for chronic migraines, but not chronic cluster headaches and unfortunately it is very unlikely that Boox will be ever tested and approved for chronic clusters because it is a rare condition. However, my colleagues and I have seen patients with chronic clusters respond to Botox. Some argue that it could be due to placebo effect, however, the severity of cluster headaches makes less likely. Besides verapamil and lithium, other drugs that have been reported to help cluster headaches are Depakote (divalproex sodium), Topamax (topiramate), and Indocin (indomethacin).

  9. Omar says: 12/28/20128:58 pm

    I’m 28 and a United States Navy Veteran. I have suffered from Chronic Clusters for about 3 years now. At first I thought it was just the stress of military life i.e. deployments and the everyday importance of doing my job. After years of self-medicating using Goody-Powders and Excedrin, My wife forced me to go see a doctor because she couldnt stand the sight of me on the floor in immense pain.. The military did so many test before coming to the conclusion that I had, what is known to few doctors, CLUSTER HEADACHES. I have been on Lithium, oxygen and Verapimil for about 6 months to a year and yet the BEAST continues to break through at times.. I do research, only to find the sames things being posted on each site. My question is, is there any new studies being published that can bring some sort of relief to a CHRONIC suffer like myself. Thank you in advance!!!

  10. Ade says: 12/20/20125:12 pm

    im 32 and have had cluster headaches since i was 18. they would last for around 10 weeks a year and i would have 3-4 attacks a day. A friend done some research and told me to pump weights to stop my attacks. As i cannot lie down during an attack i would stand up and find a fairly heavy weight to curl. A curl is a weightlifting exercise that builds the biceps. I curl until i could not curl anymore and the cluster headache would just vanish. It works better if you start curling as you get that first twitch in your eye. stand up, keep your back straight and curl until it hurts. I have not had an attack for 2 years and i believe it is down to this. PLEASE SOME1 TRY

  11. Wietz says: 11/17/20125:13 am

    Hi . Someone told me to cut processed meat ( cold meat , ham , viannas ext ) out of my diet as well as chocolates . I tried it for a week now and my clusters are 50 % less . I also learned by controlling my emotions ( don’t get to upset or excited ). That it helps a lot ! And last , sudden temperature changes of the body also needs to be avoided . I still get clusters but is much shorter and less intense . I also sniff n but of plain white pepper if I feel one coming and usually it breaks it . I eat 4 tomato’s n day which contains antioxidants . Please do not see this as medical advice .

  12. Dr. Mauskop says: 11/10/20125:56 pm

    Ask your doctor about trying Botox injections. They are approved only for chronic migraines, but some patients with chronic cluster headaches also respond to Botox.

  13. Maritza says: 11/07/201210:05 pm

    I have had cluster headaches for 37 years episodic for 35 chronic 2, just went to The Diamond headache clinic in Chicago and had histamine infusion for 10 days was pain free for 25 days and back with the severe pain, I understand my meds need to be adjusted and it takes a while to figure me out hopefully to get the right meds to at least control my pain. I never heard of xyremI am willing to try it. I have tried almost every drug out there and it either works for a short while then stops and no longer works, oxygen works 60 percent, I very desperate at age 52 looking for some relief!!!!!!!!!! Just some!!!!

  14. Dr. Mauskop says: 10/01/20129:36 am

    Many patients with cluster headaches require daily triptans (Imitrex injections, Zomig spray, and for an occasional patient even tablets are effective) and some have to take these drugs even more than once a day. The usual starting dose of verapamil is 240 mg, which can be increased to 480, 720 and higher amounts, although an electrocardiogram (EKG) should be done before each increase.

  15. Howard Stockdale says: 09/28/20122:12 pm

    I just started a new cycle of Clusters this week. My wonderful Neuro Doc is no longer around so I have been seeing a G.Practice MD. He has given me Zomig 5mg Nosespray and has raised my Verapamil from 180 ER Tabs to 240 ER and it is instructed to only take once a day. In the past I took Cafergot to abort headaches but it has now been taken off the market and the Zomig so far has done great to abort them. My question is this, If I need to take Zomig daily is that ok? My cycles usually last 30 days or so. Also would it be safe for me to take Verapmail twice a day during the cycle instead of once. I take the 180mg all year for preventation but just had it bumped for the cycle. I have been checking my bp twice a day to make sure things aren’t getting out of wack. I have also been taking 10mg of Melatonin nightly to see if that helps with the night attacks. I just started a new job 3 wks ago and I need to be able to keep these at bay and sleep enough at night so I can function at work the next day. Any advise you have I’d greatly appreciate. I have had Cluster now for 24 yrs usually twice a year spring and fall for usually 30 days. I have done just about everything from Botox to vitamins. I take the following daily: Morning: 50mg Zoloft, (1) 325mg Bayer Aspirin. Evening: (1) Cerefolin (Perscip B Vit) 600mg of Calcium, 1200 mg Magnesium, 240mg Verapamil and Alive Multi Vitam. I just added to the evening meds 5,000mgs of Vitamin D3. I have been using a site and read all the different things that people take so that is were I just recenlty got the info about the Vitamin D3 and Melatonin. Just would love to have your thoughts on what I having been doing so far and if you have any suggestions to help me be pain free. Greatly appreciate your time!

  16. Dr. Mauskop says: 09/03/201211:18 pm

    Our research showed that intravenous magnesium can help up to 40% of patients with cluster headaches, so it is worth asking your doctor about it. You may also want to ask about trying high doses of verapamil – up to 1,200 mg and higher, if you have a healthy heart and if the drug does not cause side effects, such as constipation or swelling of the feet. Other preventive drugs to consider are epilepsy drugs, Topamax (topiramate), Depakote (divalproex sodium), and Neurontin (gabapentin) or Lithium.

  17. Merle says: 09/03/201210:35 pm

    I have suffered for 20 yrs w migraines, tried every type of med, too many side effects. Some Triptans work, some stop. Botox injections cut the intensity but not the frequency . Preventative meds I take is flexeril. Axert and 1/2 Vicodin are taken when I feel one coming on. Can’t have alcohol, pot, ot too much chocolate. Someone suggested I stop eating cheese and take butter bur. I am trying both.
    I also suffer from fibromyalsia. Take lyrica and savella. Been to every dr. Some say my ha are from the fibro . Are these two related? What do you think of the Buter bur? should I try a magnesium drip? I get ha every other day. Sound, heat, light. Laughing, sneezing, bending head, lifting weights are all triggers. How could this be all from what do you think?

  18. Ernest says: 08/20/20128:27 am

    Its amazing to see how many cluster headache sufferers there in the entire globe at 1st I thought I was the only one getting these headaches from hell as I call them but now knowing there are a lot of people suffering from it I feel much better, I love reading the blogs I find some kind of inspiration from all of the people who have the same pain I have every single day its really a nitemare headache, I’m currently on maxalt en some pain killers I take it at once but it seems maxalt doesn’t work for me and I tried looking for that herb somebody mentioned on a blog but it seems nobody in South Africa even heard about it and its a pity coz I think it would have helped me a lot anyway have a lovely day to all the cluster headache sufferers I keep u all in my prayrs everyday and let’s hope that someday someone will find a cure for cluster headache patients everywhere so keep strong and let’s keep the faith thanks ps Ernest from South Africa 🙂

  19. Dr. Mauskop says: 08/16/201210:51 am

    This is from an article on our website: Preventative medications are taken on a daily basis as prophylaxis against cluster attacks. These include blood pressure medications (high doses of verapamil), anti-epilepsy drugs (divalproex sodium, topiramate) and Lithium. Magnesium infusions, which can be given in the office, are also helpful in treating cluster headaches. Botox has also helped a few of my patients with chronic cluster headaches. High dose verapamil is the first choice – up to 960 – 1,200 mg, if there are no side effects (constipation and leg swelling are the most common ones) and if the EKG is normal.

  20. Ernest says: 08/16/201210:43 am

    Hi I’m from south africa and suffer from massive cluster headaches everyday, I don’t get any rest periods where the headaches stops for a month or even a week nor a day I’m so frustrated cause this realy ruined my life already I had to quit my job cause of the headaches, I’m currently using migril which seems to help but since I’m using it everyday my body is starting to reject it please aint there any new medicine I can use?

  21. Dr. Mauskop says: 08/01/201210:43 pm

    You probably received Phenergan with Talwin and it is very likely that you were already at the end of your cluster period and these two injections just ended it earlier. Pain medications, such as Talwin are typically not very effective for cluster headaches, so your experience is unusual.

  22. Wayne LaCour says: 08/01/201212:59 pm

    I’v had clusters since I was 19 or so. I’m 64 now and still have 2 bouts a year lasting 3-4 months. Verapamil helps me at 2/240mg daily….if I start the verapamil early in the bout.

    Special Note: Many years ago a neuro gave me a shot of Talwin pain killer and a shot of phenigen (sp) for ???. Anyway, the combo shots knocked me out for about 6 hours. I woke up feeling exhausted but not only did these meds break the cycle I did not have clusters for the next 3 years. Not sure how talwin kills pain………will a research group please add this note to their agenda. Talwin (one shot) knocked the bear on its butt for three years. I have told this to several Dr’s telling me that I would have to go to a hospital to get a shot of talwin as it is habit forming……damn fools won’t research how talwin deals with pain….with phenigen as a kicker……please forward this to a well known research group etc as needed…..might be something about talwin makeup that affects the chem of the body or nerves or something. thanks wayne

  23. Mark Mandrell says: 07/28/20122:27 am

    Wow – What a great blog and I do not know where to start. My main quest is to break the cycle I am in which started again in January of this year. Recently, I started getting multiple attacks a day and I was going nuts. On Sunday – Monday I did 4 injections sumatriptan (Imitrex) and two O2 canisters. I saw my doctor and received an ONB (my 5th since Jan) and started on divalproex (Depakote). I have been taking Verapamil at 750mg a day with no relief. I also got Imitrex tablets in 100mg dose which I split in ½. What a life saver since I do not have headaches all day. I get the HA twice and pop ½ a tablet and then I am ok to function and sleep (thank god). I will try to limit my questions:
    1) Are there any new drugs to break a cycle…?
    2) How much of these drugs are too much…imitrex pills, injections, nasal sprays, O2, verapamil?
    3) Does ONB really work? Is it to relive pain or break a cycle? My quest is to always break the cycle. What is the best mixture of drugs? How many times should I get one? Should I get another ONB next week before I go on vacation? I got one on 7/23.
    4) How about good old prednisone? It does knock down the HA’s but once I tapper down the HA’s come back. How often a year should someone go on prednisone? I was on two cycles since June.

  24. Dr. Mauskop says: 07/22/201210:20 pm

    Yes I suggested trying Botox. The blog post you responded to was from March of this year. It is easy to find things on my blog – there is a search box on the right at the bottom.

  25. Marian says: 07/22/20125:28 pm

    I left a message on your news blog in connection with using Zomig every day but cannot find the site where I posted the blog!! Oh dear. I am sure you have left a reply for me somewhere but I am unable to locate it.
    With kind regards,
    Marian Proctor

  26. Dr. Mauskop says: 07/11/20129:43 pm

    Moore on sneezing and cluster headaches. Coincidentally, the latest issue of a medical headache journal Cephalalgia published a report of a patient who underwent implantation of a deep brain stimulator (which requires drilling a hole in the skull) to treat very severe and refractory cluster headaches. The probe to treat cluster headaches is implanted into posterior hypothalamus. This patient had good relief of his cluster headaches but started to sneeze repeatedly. Increasing the frequency of the electrical stimulation stopped his sneezing while still maintaining relief of his headaches. So, it is possible that sneezing may activate posterior hypothalamus and relieve your headaches.

  27. Dr. Mauskop says: 07/11/20127:13 pm

    We don’t really know what happens during a sneeze, but often, I would not say there is any enjoyment in a sneeze, but often there is a sense of relief and satisfaction. This suggests release of some neurotransmitters in the brain which may also influence a migraine. But since I’ve seen many thousands of migraine sufferers and have never heard this before, it must be rare to get relief from sneezing. What I did hear is that in some people sneezing during an attack will make the pain worse. Another interesting observation that some patients have told me is that vomiting relieves an attack and some people will force themselves to vomit to relieve their migraine. This also applies to a minority of patients.

  28. wietz Du Bruyn says: 07/11/20124:53 am

    Why do you think that the sneezing helps ? What happens to the body during n sneeze ?

  29. Dr. Mauskop says: 07/08/20129:13 pm

    The sneezing part is very interesting – I’ve never heard this from any of my cluster patients. You may ask your doctor about trying intranasal capsaicin. Capsaicin is an extract of hot peppers. Italian researcher reported a study where they had half of their cluster headache patients apply capsaicin twice a day inside the nostril on the side of the headache and the other half on the opposite side. They found that applying it on the side of the headache stopped clusters, while applying it on the wrong side did not. This was a small study, so it is not clear how effective this treatment is, but it is relatively safe. As you can imagine, this cream really burns and some of my patients could not tolerate it. In the US capsaicin cream is available without a prescription and is mostly used for arthritis and nerve pains. Botox can also help cluster headaches, although it is also unproven and I base this statement on a small number of my patients who benefited. The most commonly used prophylactic treatment for cluster headaches is verapamil, which often needs to be taken at high doses – see my previous comment.

  30. wietz Du Bruyn says: 07/08/20125:51 pm

    Good day . I am n male and 39 years old . I live in South Africa . I suffer from cluster headaces for the past 20 years and more or less every day @ 11Am , 3 pm , 10 pm . This is realy efecting my liife as n father , husband and business owner ! Suicide is. Not a option altough it crosses my mind with each attact ! Will botox. Help relief the pain ? Is there any other self-treatment ? What is the conection between clusters and the tempreture of my body / head ( I sometimes find that by aplying extreme heat and sometimes extreme cold to the left side of my face gives a little relief . I also would like too know why does it seems that when I can get my self to sneeze a few times in n sort period ( sy 6 times in one minute ) the headache subsides faster and brings relief …. Problem is that it is not that easy to get your self to sneeze .
    I am real sorry to burden you with this but the more insite I get on this ugly beats the more I can controle it !

    Kind regards

  31. Dr. Mauskop says: 06/27/201211:32 am

    I assume that hyperhomocysteinemia is being treated with vitamins B12 (cyanocobalamine), B6 (pyridoxine) and folic acid. Raising the dose of verapamil is the first step – I’ve had pateints who responded only to 720 or even up to 1,200 mg without side effects. I raise the dose by 240 mg and before each increase obtain an EKG. Some patients do not tolerate verapamil because of constipation, leg edema or EKG changes. At the same time, if pateint improves, amitriptyline and divalproex can be tapered off.

  32. dr amol dube says: 06/26/20121:14 pm

    It is very difficult to treat Cluster Headaches.One of my patient is case of Hyperhomocystenemia already suffered CVE episode with left hemiparesis and suffers from cluster headache.He is on Verapamil ,Divelproaxe Sodium,Homocheck,Amitryptiline and Aspirin and Sumatryptan during attacks.He still gets one attack weekly and i find it difficult to manage.Any new research molecule for prevention of attacks please comment

  33. David West says: 04/26/20126:25 am

    Kate hi,

    i suffer from migraine about three times per week. I take Zomig at onset which does work although not perfectly. I also avoid the following: chocolate, all alcohol, food with preservatives and cheese. I don’t know about Xyrem.

  34. Dr. Mauskop says: 08/25/20111:43 pm

    There is no evidence that Xyrem helps migraine headaches and even in cluster headaches it was given only to 4 patients. Botox, on the other hand is clearly effective and is approved by the FDA for chronic migraine. Botox is also safer than Xyrem.

  35. Kate Andre says: 08/25/20111:35 pm

    I suffer from migraines. i get them every day. The numbers range from 3 to 10, on a pain scale. In the last 30 days I had just one day with out a migraine.
    Do you think I would benefit from Xyrem? So far nothing is helping. I’m hesitant to use BOTOX.

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