I am a 22 year sufferer and towards the end of my spring cycly (hopefully). Thanks to this board tried my first dose of Melatonin last night at 9mg and woke up with an attack about 1 hour after falling asleep. It was noticably less painfull and easier to abort than the last 2 in this cycle (I get one every couple of days for 3-6 hours). Was it the Melatonin or just a normal end of the cycle? Will keep you posted.

well, Melatonin day 2 went well, slept like a baby all night. I rarely see the beast 2 nights in row though. The good nights sleep was still a godsend. Gonna keep on to see if any long term effects.

It can take a few days before it becomes effective. I'd say keep at it.

I like melatonin a lot.  I mix it with benadryl, which is a good sleep aid also.  I try to take it on an empty stomach 45 mins before bed.  
Definately keep us posted.  

night 3 Melatonin:

another great night's sleep, no visit from the beast. still taking 9 mg per night. last attack was 2 nights ago and not as strong as normal.

keeping my fingers crossed

night 4 melatonin:

awoke with the beast 1 hour after falling asleep. Pain never escalated very much and it was relatively mild and over in 2 hours (has been 4-6). Even less pain than night 1. Hopefully this is working and they will be gone soon!

night 5 melatonin:

slept like a baby all night, feel great (except for waiting on the caffeine to come around)

That's great that you've found something that may help.

Melatonin was a regular part of my ch battle too. It took me a while to find the right dose, but I settled at 6mg. I found with 9, it took me too long to wake up and I felt real groggy for a few hours after waking.

Keep us updated on how it goes.

Em
x

week 1 melatonin:

been getting Great sleep all week and havnt had an attack for 3 nights now. Should have had another one by now and the last one was very mild.

How long do you generally wait before discontinuing or do you continue to dose out of cycle?

There is some research that episodic clusterheads have reduced melatonin production and no clear 'peak' in levels at night, even when they are in remission.  I often take a low dose (~1 mg) even out of cycle.

Was having some acid reflux a while back, found an article that melatonin can help with that, went back on melatonin, and it worked. Maybe a coincidence (those things tend to come and go for many), but could be something deeper at play.


Quote:

J Pineal Res. 2006 Oct;41(3):195-200. Regression of gastroesophageal reflux disease symptoms using dietary supplementation with melatonin, vitamins and aminoacids: comparison with omeprazole. Pereira Rde S.    The prevalence of gastroesophageal reflux disease (GERD) is increasing. GERD is a chronic disease and its treatment is problematic. It may present with various symptoms including heartburn, regurgitation, dysphagia, coughing, hoarseness or chest pain. The aim of this study was to investigate if a dietary supplementation containing: melatonin, l-tryptophan, vitamin B6, folic acid, vitamin B12, methionine and betaine would help patients with GERD, and to compare the preparation with 20 mg omeprazole. Melatonin has known inhibitory activities on gastric acid secretion and nitric oxide biosynthesis. Nitric oxide has an important role in the transient lower esophageal sphincter relaxation (TLESR), which is a major mechanism of reflux in patients with GERD. Others biocompounds of the formula display anti-inflammatory and analgesic effects. A single blind randomized study was performed in which 176 patients underwent treatment using the supplement cited above (group A) and 175 received treatment of 20 mg omeprazole (group B). Symptoms were recorded in a diary and changes in severity of symptoms noted. All patients of the group A (100%) reported a complete regression of symptoms after 40 days of treatment. On the other hand, 115 subjects (65.7%) of the omeprazole reported regression of symptoms in the same period. There was statiscally significant difference between the groups (P < 0.05). This formulation promotes regression of GERD symptoms with no significant side effects.

Quote:

Altern Ther Health Med. 2008 Jul-Aug;14(4):54-8. Melatonin for the treatment of gastroesophageal reflux disease. Werbach MR.    The enterochromaffin cells of the gastrointestinal (GI) tract secrete 400 times as much melatonin as the pineal gland; therefore, it is not surprising that research is finding that this indole plays an important role in GI functioning. In animal studies, it protects against GI ulcerations, and randomized clinical trials suggest its efficacy in treating functional dyspepsia and irritable bowel syndrome. Melatonin administration has been shown to protect against esophageal lesions in animals. Moreover, in a randomized, single-blind clinical trial of subjects with gastroesophageal reflux disease (GERD), the combination of melatonin with other natural supplements was found to be superior to omeprazole, a proton pump inhibitor (PPI). Its administration as a single treatment for GERD has not been previously reported. A 64-year-old Caucasian female who required treatment with a PPI for symptoms of GERD wished to substitute a natural treatment because of the risk of worsening her osteoporosis. She experienced a return of symptoms following each of three 20-day trials of a proprietary blend of D-limonene when attempts were made to discontinue the PPI. She then underwent a trial of a natural formula consisting of melatonin 6 mg, 5-hydroxytryptophan 100 mg, D,L-methionine 500 mg, betaine 100 mg, L-taurine 50 mg, riboflavin 1.7 mg, vitamin B6 0.8 mg, folic acid 400 microg, and calcium 50 mg. After 40 days, the PPI was withdrawn without a return of symptoms. Subsequently, an attempt to reduce melatonin to 3 mg resulted in symptoms, while all other ingredients were withdrawn with minimal symptoms during 10 months of follow-up.

I had my first attack in 4 days last night about 10 p.m The pain was considerably more mild than normal but the duration was still 3+ hours. All in all, cant complain, hopefully in another week or so they will be gone.

I wish melatonin worked so well for me.  

Have you tried pairing it with oxygen?  The Benadryl suggestion is valid, too.  I've heard good things about that.  

Benadryl and melatonin together are a knock-out combination for me.

ok, dumb question time....  Can you buy melatonin otc or do you need a script?  never tried it, but the nights are getting bad around here!

mike d wrote on Jun 19^th, 2009 at 8:09am:

ok, dumb question time....  Can you buy melatonin otc or do you need a script?  never tried it, but the nights are getting bad around here!

In the US, you can buy it OTC. In the UK, I believe you need a script for it.

had another attack today at 6 p.m. (normal 2 days apart) but this one was at different time of day and pain never arrived. I had all of the symptoms (jaw tightening, nasal, etc) but the pain never came.

the sporadic times and lessened pain make me think the cycle is almost over. Is it the Melatonin or normal cycle end? Hard to say, but no question thatthe Melatonin mad a positive difference, I will make it a normal part of my regimen.

Quote:

In the UK, I believe you need a script for it.

That is right, though a lot of regular docs won't prescribe it because they have to take full responsibility for prescribing it as it's not licensed for use here (shouldn't they for ANY drug really, but anyway...). A CH-experienced neuro would prob prescribe it.

I bought mine on eBay first of all (was sure to buy a brand that was sold in US to avoid anything dodgy!) and told my doc about it and he was more than happy to monitor me and learn from me at the same time.

I also took the melatonin even when I wasn't getting hit so bad, but lowered the dosage as Monty suggested. That way, it doesn't take so long to get back into your system when the episodes start up again.

Em
x

had nother minor attack at 3 p.m. yesterday. Felt all of the symptoms starting, slammed 2 monster energy drinks with my pain meds and never did get the full pain, episode completely over in less than 30 minutes! Another very mild attack at an unusual and NOT cyclic time...looks to be fading away

had my first night attack in some time (still taking 9 mg melatonin before bed). Awoke 2 hours after falling asleep, took meds and slammed 1 monster drink, pain never escalated and was asleep again in 30 minutes! Looks to be working better as timegoes on. This was by far the shortest attack I have had this cycle. Lets see if it was the last, I could really use a beer...lol

WOOHOOO!!!

Stick with it.....it can't harm ya so if hewlping I would stay with it then taper off when cycle is over

had another short attack yesterday at 1 p.m. Same as the last few, very mild pain, if any and gone in 30 mins with pain meds and monster energy drink. Cant say for sure if its the melatonin or just the end of cycle as I am usually finished with them by now, but I will certainly make it a regular art of my routine, probably tapering down to 3 mg after they are over

6 days attack free yesterday! I was feeling a little cocky and wanted to test out my alcohol tolerence before the big 4th weekend so I drank 2 beers at 5 p.m. It triggered an attack about an hour later. Luckily it was another very mild one that was easily aborted in 30 minutes.

Just from personal experience, I always wait a minimum of 2 weeks from the last inkling of pain. Usually a month.

Thanks for sharing your experience with the Melatonin!  When I read it about it here, I figured, "Why not?"  I started with 10mg a night because I always get night hits when in cycle.  I also started after my preventative (finally) kicked in, however, I FELT a zillion times better than I had been feeling.  I have been out of cycle now for a month and I decided to stay with a lower dose of the melatonin.  For me, that is 6mg.  I can ramp up as necessary...  

I find that taking it helps and I feel better,  I so hope that that is true for you, too! ;)

I was wondering what brand of Melantonin u were using ? I started last night for the first time 9mg. I bought mine at GNC. I did read that different brands have different true amounts. Read this excellent article on treatments forwarded kindly by Bob Johnson

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if this brand doesnt work, I will try a different brand. I will let post each day how I do, hope it works....

I bought mine for about half the price of GNC at Costco, brand is Wieder.

Thanks, Frst night I took melatonin (9mg), night before last, I had my usual HD at bedtime and took Treximet. Surprisingly I awoke two or three times with no HDs. yesterday had maybe three mild hds during the day, bearable. Last night again took 9mg also had bedtme HD which was bad but not severe. Didnt have to take pill and only awoke maybe once. Feeling more refreshed and dont have any shadows as of 9am. Seeing the Nero today.

great news!keep taking it, ahould see full effect after 3-4 nights

Day 3, (9mgs) again got the bedtime HD not too severe, no meds, woke up twice, mild headache the second time, had vivid dreams which i read is a side effect. I'm hoping to see lottery numbers and the winner of the 8th at belmont tonite :)..but again feeling refreshed no HD/shadows at work yesterday and no shadows this morning..Neuro encouraged the melantonin use, said that there are studies been done at this time on its use in relation to CH.

After reading these posts, I decided to start taking Melatonin and see if it helps.  I was having 5-6 attacks per night.  They start about an hour and a half after going to sleep.  I have taken it in the past (purely as a sleep aid) and didn't notice any difference so I stopped taking it.  

I have taken it the past 2 nights.  I decided to up the dosage to 10 mg.  The first night it did make me really sleepy, but didn't stop the beast from visiting.  He visited about 5 times.  3 out of 5 were very mild.  I took it again last night and he only visited twice during sleep and once right when I woke up.  All were very mild, so maybe it is helping.  Red Bull has become my best friend these past few days.  If I drink it early enough, it aborts before getting really bad.  I am going to keep at it and pray it continues to get better.  

Wishing all of you PFDAN!!!

Pamela

didnt get a chance to post over the weekend, last friday all day felt great, made a big mistake and went out friday and drank alcohol woke up 3am with severe HD,imitrex . Sat felt good all day took 9mg, woke sun 6am severe HD Kip 8 imitrex, sun 4pm severe HD Kip 8 imitrex. 9mg at bedtime. Today awoken  1:30am HD mild imitrex HD disappeared fast. Kicking myself that I went out friday night, I certainly learned my lesson about alcohol. I'm thinking I threw myself off completely and will try the experiment again. My outlook was great on friday not so good today. :(

Stick with it!!!

had some mild headaches yesterday, took 9mgs hour before bed, had bearable HD at bedtime fell asleep no meds, this is good: All day today no shadows or HD's. I think melatonin helps. Interested to see what happens tonight. Will update tomorrow.....

great news ddikevin! stick with it. I am 3 weeks headache free now (except for mild ones induced by a beer test). I managed to drink 4 beers each of the last 2 nights with no headaches! I think the cycle is finally over! I would say the melatonin was a big help, if nothing else it lessened severity and number of attacks. Will definitely keep it in my arsenal.

thanks developed HD when i got home but was able to ride out without meds Kip 4 or 5. No HD at bedtime 9mgs again...have rebound HD (on other side of head) today but again I think the melatonin is helping. When they stop I will taper off.....this site is great

I'm assuming HD stands for headache? I've never seen that one before.

You'll have to forgive me - I'm from Milwaukee, where HD stands for Harley-Davidson.

Yes HD is for headache and it seems since trying Melatonin the frequency and severity has been lessened. I am not out of the cycle yet but I think it helps. Dreaming of beer and tequila now...will have to wait....

Hi Kevin,

great to see mel is working for you. I get a cycle every three years and the last two I've used nothing but mel. We can't buy it in europe - baned by the EU because of lack of medical research on long term use. Anybody reading from England - I usually buy mine from Agestop which is a respected Americam website.

Just a warning  - the first time I used mel-  9mgs before bed -  it took about a week to kick in but then it worked wonders. The next cycle I reached for the botle in the cupboard and after a week  - no effect - then I read the label - the bottle was out of date - sent of for some fresh supplies and it worked again.

A note of caution tho' whilst mel works for some of us it doesn't work for everybody and over the years people have reported that it has worked for two or three cycles then stopped working.

Wishing you all pain free days