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Posted in Im At the end and cant keep going on 10 May, 2011 - 12:03 pm

[quote]Stretch said:
"Hi all Im at the end and cant keep going Im in another cycle have been for 3 weeks. I push my family away and moving out so they dont have put up with it anymore. I want to die I see now end in sight and no light at the end of the tunnel. Im sick of going to the medical people only to be told we have tried everything... I am a Lost soul looking for a good night sleep. Stretchiconiconicon"[/quote
Have you tried 10mg mixed with 15mg pure liquid Melatonin?
It has really worked for our son who went through an unbearable year last year. He is now pain free. The Amitriptyline takes a few weeks to start working however when it does it is fantastic. The dose needs to be low in order to help with pain.
Good Luck.

Posted in THIS REALLY WORKS on 10 May, 2011 - 11:58 am

Tom has been taking 10 mg Amitriptyline and 15mg Melatonin (pure liquid compound) for the past 5 months. He has not had a CH since. He takes the dose half an hour before sleep. He sleeps well and has been so happy. As Tom is only 8 the dose of Melatonin may have to be increased for an adult. I hope this helps others.
Good Luck
Martine (Tom's mum)

Posted in Untitled on 07 Feb, 2011 - 9:41 am

Just coming back to the site now. Tom was pain free until mid Dec and then when into a terrible patch. We then added amitriptaline ( spelling) into the combination. As long as Tom has twelve hours sleep this seems to work. He has been pain/attack free for 3 weeks.
Melatonin needs to be made up at a compounding chemist and taken in its pure form in order to work. Tom takes 3mg and he is only 8 anything less does not work.
Good lick to any one trying it out.

Posted in Untitled on 03 Dec, 2010 - 3:55 pm

Tom has been on a very high dose of Melatonin which has stopped the CH's. If the dose is reduced the attacks return. He is on 3mg per night. I have done a lot of research on Melatonin and it's use for CH's and other headaches, some of it is attached below. My apologies if this is too much to read. However it is VERY exciting that something has finally helped. I hope it helps others. It is alos a drug that does not cause damage to the body as some of the other drugs for CH's do.
Adenosine is found in every part of the body, because it plays a role in the fundamental ATP-related energy metabolism, but it has special functions in the brain. There is a great deal of evidence that concentrations of brain adenosine are increased by various types of metabolic stress including anoxia and ischemia. The evidence also indicates that brain adenosine acts to protect the brain by suppressing neural activity and also by increasing blood flow through A2A and A2B receptors located on vascular smooth muscle. By counteracting adenosine, caffeine reduces resting cerebral blood flow between 22% and 30%. Caffeine also has a generally disinhibitory effect on neural activity. It has not been shown, however, how these effects cause increases in arousal and alertness.

Adenosine is released in the brain through a complex mechanism. There is evidence that adenosine functions as a synaptically released neurotransmitter in some cases, but stress-related adenosine increases appear to be produced mainly by extracellular metabolism of ATP. It is not likely that adenosine is the primary neurotransmitter for any group of neurons, but rather that it is released together with other transmitters by a number of neuron types. Unlike most neurotransmitters, adenosine does not seem to be packaged into vesicles that are released in a voltage-controlled manner, but the possibility of such a mechanism has not been completely ruled out.

Several classes of adenosine receptors have been described, with different anatomical distributions. A1 receptors are widely distributed, and act to inhibit calcium uptake. A2A receptors are heavily concentrated in the basal ganglia, an area that plays a critical role in behavior control, but can be found in other parts of the brain as well, in lower densities. There is evidence that A 2A receptors interact with the dopamine system, which is involved in reward and arousal. (A2A receptors can also be found on arterial walls and blood cell membranes.)

Beyond its general neuroprotective effects, there are reasons to believe that adenosine may be more specifically involved in control of the sleep-wake cycle. Robert McCarley and his colleagues have argued that accumulation of adenosine may be a primary cause of the sensation of sleepiness that follows prolonged mental activity, and that the effects may be mediated both by inhibition of wake-promoting neurons via A1 receptors, and activation of sleep-promoting neurons via indirect effects on A2A receptors. More recent studies have provided additional evidence for the importance of A2A, but not A1, receptors.
ATP is a good candidate for a signal that mediates the local coordination of individual circadian clocks in the SCN and perhaps in other brain regions.
The circadian rhythms in the pineal gland
The major function of the pineal gland is the synthesis and release of melatonin, a neurohormone, which is elevated at night and circulated throughout the body serving as a signal of time to integrate physiological functions with environmental lighting on a daily and seasonal basis (Bailey et al. 2009; for more recent reviews, please see Klein 2006; Macchi and Bruce 2004). In lower vertebrates, pinealocytes possess a photosensitive and autonomic circadian rhythm in melatonin secretion that persists in dissociated cell cultures (Robertson and Takahashi 1988a,b; Zatz and Mullen 1988a; Zatz et al. 1988). In fact, avian pinealocytes resemble retinal cone photoreceptors as they both have oil droplets, utilize opsin, arrestin, transducin, and cGMP-gated cation channels (CNGCs) for phototransduction, and display hyperpolarizing responses to brief pulses of light (Pu and Dowling 1981; Tamotsu and Morita 1986; Dryer and Henderson 1991). Interestingly, mammalian pinealocytes are not sensitive to light, and the circadian oscillation in pineal melatonin production in this case is under SCN control through a polysynaptic pathway that involves both central and peripheral neuronal structures (review in Maronde and Stehle 2007). Even though the mammalian pineal gland serves as a peripheral oscillator driven by the SCN, the machinery for the production of melatonin, including the expression of key enzymes AANAT and hydroxyindole-O-methyltransferase that synthesize melatonin, is under circadian control (Klein 2006; Maronde and Stehle 2007). Over 600 genes that are important for immunity, cell cycle and death, intracellular signaling molecules, transcription factors, and circadian rhythmicity are also under circadian regulation in the mammalian pineal gland (Bailey et al. 2009). However, the molecular mechanism underlying melatonin secretion from pinealocytes is still not well understood, and the circadian regulation of cell excitability or ion channel activity have only been documented in non-mammalian pinealocytes.
Oxidative Stress
The degenerative processes associated with aging is a biologically complex and multifaceted phenomena. A current, but putative theory on aging associates the gradual accumuation of oxidative stress in neural tissue to accelerated neurodegenerative changes and age-related diseases. Oxidative stress is defined as the cellular damage caused by oxygen free radicals. The two types of oxygen free radicals, the superoxide anion and the hydroxyl radical are naturally produced by product of aerobic metabolism, the latter bding more biologically toxic. The reactive nature of free radicals stems from their unpaired valence electron that mediates oxidative toxicity, damaging nucleic acid, membrane lipids, proteins, and carbohydrates. Approximately 5% of celular oxygen is not used in the production of ATP but is reduced to reactive free radicals. An estimated 1011 free radicals/cell/day formed, inducing perhaps up to 105 oxidized DNA residues formed/cell/day. Furthermore, it is suggested that the progression of brain cell aging occurs when the balance between oxidative stress and antioxidative defense tips towards increased free radical production. Neural activity,especially the release of the accumulation of oxidative stress leads to the morphological and physiological destruction of neurons. A gradual deterioration of neurological tissue occurs represented by functional loss, such as slowed reactions, diminished memory, or tremour. This progressive degeneration is the priced the ody pays for utilixing oxygen. Increased free radical generation may also results from the additive exposure to toxins, UV light and stress or from the decrease in the bodies defense sysems to reduce oxidative stress, namely free radical scavengers, antioxidative enzymes, or meal chelating agents.

More direct evidence that oxidative stress increases melatonin consumption in rats has been provided by Tan et al. [78]. They observed that rats loaded with melatonin and then exposed to ionized radiation (which generates ĽOH) significantly increased cyclic 3-hydroxymelatonin (C3-OHM) excretion in urine. The rapid drop in circulating melatonin under conditions of excessive stress can be considered a protective mechanism for organisms against highly damaging oxidants; in this sense, melatonin can be categorized as a first line of defensive molecule. In addition to direct prevention of tissue injury, the increased levels of melatonin metabolites such as N1-acetyl-N2-formyl-5-methoxykynuramine (AFMK) and N-acetyl-5-methoxykynuramine (AMK) upregulate antioxidant enzymes and downregulate the pro-oxidative and proinflammatory enzymes (see below). In many disease states which reportedly involve free radicals and oxidative stress, e.g. Alzheimer's disease, cancer and coronary heart disease, melatonin levels in these patients are significantly lower than those in healthy counterparts. It is not clear whether the low melatonin levels in these patients are the result of consumption due to the elevated free radical production or due to the lower production of melatonin.

The low bioavailability (average 18.9%) and large individual variation (average 17.7-fold) may well explain the different responses in subjects who take melatonin orally. Currently, the most popular melatonin formula commercially available is a 3 mg tablet. For some subjects, this dose when taken to benefit sleep may induce drowsiness the day after; for others, whose bioavailability is low, this dose may not be sufficient to treat insomnia or related disorders. To obtain the optimal effects of melatonin treatment, individualization of dose is suggested based on the serum or salivary melatonin levels after melatonin administration or adjusting the dose depending on the responses of the subjects.
Drug interactions also influence the bioavailability of melatonin. For example, co-administration of melatonin with CYP1A2 inhibitor, fluvoxamine (also a serotonin reuptake inhibitor), in healthy subjects, results in a 17-fold increase in melatonin blood levels [122]. These data also indirectly indicate a very low melatonin bioavailability in humans, probably

Posted in Untitled on 25 Oct, 2010 - 11:05 am

Tom's physic team agreed that distraction would not be beneficial in a full blown attack - after I showed them a few You Tube clips. The problem is people do not understand the pain level patients are suffering. I send quite a few friends the Ouch You tube clip. They now have a better understanding.
I will post information I found about about Melatonin on the medications forum.
I think it is really helping Tom.
Thank you for all your support and comments.

Posted in Untitled on 19 Oct, 2010 - 3:03 pm

Thank You for providing this in site. I will take a copy with us to the hospital tomorrow.

Posted in Untitled on 17 Oct, 2010 - 12:45 pm

Hi Shell,
I totally agree. As Tom has Mitochondrial disease we are used to him being put into the 'too hard basket'. There is so little known about his disease and no cure. I am always having to prove to the doctors that I am not exaggerating about new symptoms that occur.
Some neurologists will see both children and adults. Dr Sun obviously does fit into this category. Very disappointing however I will find an answer somehow.
This week I will have to prove to the Phycologists that distraction will not work. As I have to speak for Tom my words are not as strong as his. He is too young to voice how his attacks feel. I am going to show the team a few videos from this site and other sites to try and make them understand.
Best wishes,

Posted in Untitled on 16 Oct, 2010 - 1:54 pm

Exactly. I will show your reply to the Phycology team. I have told them over and over that distraction is not something that we can use. However they don't seem to believe me!!!
Thank you for taking the time to reply.

Posted in Untitled on 16 Oct, 2010 - 12:16 pm

Can suffers explain that distraction does not help when in an attack?
My son's physic team seems to think that if I distract Tom I can help him get over his pain when having an attack!!! Poor child. They do not realise the intense pain that he goes through. I am able to tell him a story at the end of an attack however when in the middle of an attack he does not even want to be touched.
I need to prove to the Physic team that distraction does not help. I will print out any replies and show the team on Wed.
PLEASE HELP with your comments.
Thanks you very much.

Posted in Distract on 16 Oct, 2010 - 12:14 pm

Can suffers explain that distraction does not help when in an attack?
My son's physic team seems to think that if I distract Tom I can help him get over his pain when having an attack!!! Poor child. They do not realise the intense pain that he goes through. I am able to tell him a story at the end of an attack however when in the middle of an attack he does not even want to be touched.
I need to prove to the Phsic team that distraction does not help. I will print out any replies and show the team on Wed.
PLEASE HELP with your comments.
Thanks you very much.

Posted in Untitled on 16 Oct, 2010 - 12:10 pm

Hi Shell,
Sadly Dr Christina Sun-Edelstein will not even take the time to speak to me as she does not treat children with CH. Very disappointing that some doctors as so close minded!! They loose the fact that they studied medicine to help sufferers of illness.
Tom went through 6 attacks last night all lastin over 20 minutes of intense pain. We have no management plan as his neuro doe not know what to do!!
Best wishes

Posted in Untitled on 14 Oct, 2010 - 10:32 am

Hi Shell,
Thank you for this information. I started Tom on Melatonin last night however he had 4 attacks through the night. I will give the melatonin a few weeks to see if it is of any help. I am also taking him to an osteo this afternoon to see if he can help. Tom wears a medical backpack all day which causes a lot of stress on his neck muscles. Perhaps this is a trigger, who knows.
I have left a message for Dr Sun-Edestein to see if she can offer any advice. Once again thank you for this contact.
Best wishes,

Posted in Untitled on 13 Oct, 2010 - 2:42 pm

Thank You Shell,
I went to the doctor this morning. A compound chemist has made up a liquid mix that is pure. I am going to try 10mg tonight. He enteral feeds so I can inject the fluid into his stomach via his feeding button. Fingers crossed it will work as he has had 3 very bad attacks in the past 12 hours. The past few attacks are so terrible I have never seen such pure pain. It is heartbreaking not to be able to console him.
Thanks Martine.

Posted in Untitled on 12 Oct, 2010 - 5:21 pm

Hi, Where would I get pure Melatonin? The healthfood store told me it is not legal in Australia only the homeopathic Melatonin is avaliable from Bioglan.
Tom is having a very bad time with the night attacks as well as the day.
Thank you

Posted in Untitled on 12 Oct, 2010 - 5:19 pm

shell said:
"Hi Guys,
I've been researching again and have found some info for those who suffer from the night time hits, people have had good success with melatonin before bedtime. Some people have had great results and can manage a good 8 hrs sleep most nights in a cycle.
It is recommended to start with 10mg 30 minutes before bed time. Some go as high as 15 mg to get through the night. Helps to avoid the wake up calls. Give it 7-10 days to see if it helps you. It can be bought at health food stores but this is not the correct product (active ingredients differ), you can get a prescription from your doc if interested.
melatonin, no side effects, stops night time attacks for many,
cons some people report waking up grogggy.....

Let us know if you've tried it and what results you've had? Could be worth a try in addition to those who verapamil, or other preventative's are not quite as effective as required.

Regards Shelliconiconicon"

Posted in Untitled on 17 Aug, 2010 - 5:11 pm

shell said:
"I found this information at :


The trigeminal autonomic cephalalgias (TACs) include cluster headache, the paroxysmal hemicranias and short-lasting neuralgiform headache with conjunctival injection and tearing (SUNCT). Each of these disorders occurs in an episodic and chronic form. All of them have in common the occurrence of unilateral pain in the distribution of the first division of the trigeminal nerve and ipsilateral autonomic features.
short-lasting neuralgiform headache with conjunctival injection and tearing (SUNCT) syndrome.

The differences between cluster headache and the other trigeminal autonomic cephalalgias are the duration and frequency of daily attacks and their responses to particular treatments. Cluster headache typically lasts from 15 to 180 minutes and occurs one to eight times daily; the paroxysmal hemicranias are brief (2 to 45 minutes), but occur more frequently (one to 40 attacks daily). Cluster headache
occurs more frequently in men, while episodic paroxysmal hemicrania usually affects women.

The other main factor concerned with differences between the two are the pain levels, the paroxysmal hemicranias are considered moderate to severe pain where as cluster headache's are considered severe to excrutiating / intolerable.

Regards Shellicon"

Thanks for this info. I was aware of the differences.The neuro is still placing Tom in the CH category as the pain is so severe. I took a video to give the doctors an idea of the pain Tom is in. He has 1-5 attacks in 24 hours, lasting from 15-40 minutes.
Best wishes,

Posted in Untitled on 17 Aug, 2010 - 9:27 am

Toms headaches said:
"Tom has been prescribed Topomax as Indomethacin is no longer helping his pain. Has anyone used Tomamax and what were the results?
Thanks Martine."

Thanks Heather,
Tom was sedated last night and is now on Topomax. We will see how he goes.
I hope you get out of hospital soon.

Posted in Untitled on 16 Aug, 2010 - 3:23 pm

Toms headaches said:
"Has anyone been diagnosed with CH and CPH?
CPH has shorter and more frequent attacks and is responsive to Indomethacin.
Although I have read that Indomethacin has helped other CH patients.

Chronic paroxysmal hemicrania (CPH) is also known as Sjaastad syndrome

Posted in Untitled on 16 Aug, 2010 - 1:55 pm

Tom has been prescribed Topomax as Indomethacin is no longer helping his pain. Has anyone used Tomamax and what were the results?
Thanks Martine.

Posted in Untitled on 15 Aug, 2010 - 7:02 pm

Has anyone been diagnosed with CH and CPH?
CPH has shorter and more frequent attacks and is responsive to Indomethacin.
Although I have read that Indomethacin has helped other CH patients.

Posted in Untitled on 15 Aug, 2010 - 7:00 pm

Karmadog said:
"Hi Martine,
I have a seven year old son who is in the process of a diagnosis between CH and one of the others in the TAC group. The onset for my son has been much milder than what you are describing, but I do know that we have been exceedingly lucky in that. Can't help much - being so new to this myself - other than to offer my support. The other people here are incredibly helpful, with a wealth of knowledge. Ask any questions you have. Someone will have the answer.
Good luck
Al ;^)"

Thank You for your support. We are really going through a difficult time. It is also being suggested Tom may have CPH although his symptoms fit more under CH than CPH.
Good luck to your son too.

Posted in Untitled on 04 Aug, 2010 - 9:26 pm

Toms pain has been so unbearable we started him on indomethacin today 25 mg. I hope it works. Has it helped anyone else?

Posted in Untitled on 04 Aug, 2010 - 9:19 pm

Tom is only seven. Therefore does not drink or smoke. Has not been exposed to smokers. He is left handed! He alsomhas a Palmer crease. Doe anyone else have one? I would love to know why he has started so young.

Posted in Untitled on 04 Aug, 2010 - 7:51 am

shell said:
"Hi Martine, Tom,
I wish I had an answer for you! The closest thing I can suggest is check out the children's section (its within the supporters section) of the US site. I don't like to have to send you elsewhere for info, however In america they have quite a number of children diagnosed at young ages and may be able to give you the help you require. My heart goes out to you guys, I know what its like to support an adult with CH but to have this horrific condition as an innocent child is just devastating!icon
If there is anything we can do to help or you just need a shoulder to cry on let us know.
Wishing you both Pain free days and sending my prayers to you!
Regards Shellicon
Please let us all know how you guys are doing, All the best, Goodluck!"

Thanks Shell,
I will have a look at the childrens section. Tom had is worst pain to date yesterday. 40 minutes of pure screaming!!!! Heart breaking. Thanks Martine.

Posted in Untitled on 04 Aug, 2010 - 7:50 am

benny said:
"See my post on nerve root block, I have just gone a year without a CH, it dosnt hurt and I dont have too take drugs, hey it worked for me! If i can help out in any way just message."

Thanks I will have a look at the nerve block post. Although trying LED therapy at the moment. Time will tell. We just have to live with the pain hopefully until the LED takes effect. They say 10 days. Worth a try. Thanks, Martine.

Posted in Untitled on 02 Aug, 2010 - 9:06 pm

Toms headaches are increasing - 4 today. The first at 1am. Poor boy. It is really difficult not being able to take the pain away. We are trying LED treatment as of this afternoon. Fingers crossed it will help.
Thanks for comments.icon

Posted in Untitled on 01 Aug, 2010 - 4:45 pm

Hi, My seven year old son has CH's. They started at the end of last year. He sometimes has a dull or mild attack and he thinks a major attack is about to start. I was unsure if this could happen and was wondering if he was pretending however I don't believe he is pretending any longer. I just seems to be the nature of the syndrome. Unfortunately the attacks are mostly severe. I wish I could help him.

Posted in Untitled on 01 Aug, 2010 - 4:24 pm

Thank you. We will look into oxygen therapy. As Tom feeds with machines etc I will have to ensure there is no problem with introducing oxygen. I have also been told that additional oxygen may be bad for Mito sufferers. Will ask his neuro.

Posted in Untitled on 01 Aug, 2010 - 12:17 pm

My seven year old son has cluster headaches. They have increase in pain intensity to 10 out of 10 for pain. Unbearable. He also has mitochondrial disease. He feeds with machines, may go blind and experiences neuropathis pain. Does anyone have or know of children with similar problems? It is so sad to see him go though so much pain. we are trying indomethacin and sedation. The combination takes the headaches away for a few days. However they return. We are fund raising to try and find a cure for mitochondrial disease. We arebtrying acupuncture And will also try LED ro help with the head pain. Any advice would be greatly appreciated. Thank you. Martine (toms mum).