Cast Iron

Yes the neuro was kinda shocked because he had never seen this before, notably only 600mg a day has the positive effect on me. I heard that some people had to go all the way up to 3600 without a decent effect, but maybe that level does bring the side effect of being suicidal, who knows...I have no side effects what so ever at 600mg/day, but echo that I have to watch my appetite. Apart from that I have found no other tendencies other than slowly picking up my life again after so long. Over the last months I have been able to slowly decrease and stop some of the other medications. The sandomigran is gone, and the verapamil is only 50% (720 to 360), where I have a feeling I could stop this too eventually. I do realise two things: I am lucky and tomorrow everything can be different, so cherishes each day!

Its been a while, but for good reasons, 112 reasons! Long story short, gabapentine is working fo me, throwing my chronic CH into oblivion. The long story is that for the last few years I turned into chronic with heaps of medications trying to control >200 hits a month. My neuro suggested to take the Indomethasine to see if I could positively react to this and diagnose paroxysmale hemacrania. Went all the way up to 275mg but eventually after month of severe fatigue and other side effects we concluded I did not respond to this as I should be. Slowly decreasing the indomethacine, an old spinal injury came back into my life with constant pain in my lower back and leg. I was prescribed tramadol as a pain killer to get through the day and night, but oh boy, this did not work with my other CH medications. I couldn’t go to the toilet for days in a row, more fatigue and more importantly the number of hits increased, although not the severity. Had to stop the tramadol and eventually requested another type of pain killer, which was the gabapentine. Still I used the O2, verapamil, sandomigran, naratriptan, suma’s and now took another pill. After the first one in the morning, no hits during the day and night…that’s odd…well must be a coincidence. Three days later the hits disappeared completely, and I was only taking 300mg in the morning and evening. Then I started counting, 10 days, 20, a month, 3 months, and today 112 days without a significant hit. Happy days cause I am not so anxious anymore when the next hit will come, if I can go for groceries without my O2 and suma with me, or not. Every now and then, the cluster bunny comes around and shows it ugly face, a little O2 does the trick, but makes me realise it is not gone. It is well suppressed with the gabapentine, somehow there is a little chemical component inside that I needed. Neuro does not understand this as there is little medical evidence for this, but looks at me with a smile. He now advises his other patients in his top5, actually 4 because I am number 5, to take gabapentine to see if it has the same results as I have. Should you not have tried it, I can recommend it, but always be certain to consult your neuro first as this is an anti epileptic also used for neuropathic pain. Alex

From my experience i noted that after about 4 times O2 in say 2 hours, 25L/m for 5-10m, it becomes ineffective and have to use a sumatriptan to abort. Staying longer on the O2 after the attack was aborted, did not make a difference for me, as the daily cycle continued. I do not see that as a rebound, more your personal cycle of the beast showing its ugly face

LP3 Yes the reality is it is relentless and without mercy Yes 15 attacks a day is unbearable Yes I question ‘why me?’ Yes there is no future, only today and tomorrow Yes the medicines are no cure and take a huge toll on my health Yes I can not enjoy simple things anymore like movies or concerts Yes there is only little that I can eat or drink without triggering Yes the nights are long not knowing when it is going to stop Yes tomorrow it will start all over again Yes I am fucked Yes I do not feel fucked Yes I refuse to give up Yes I need to be stronger than this Yes I can not tell my parents up in heaven, ‘sorry I gave up’ Yes I lead by example for my children Yes I do accept the help of my friends for the things I can’t do anymore Yes the glass is half-full, not half empty Yes I can still see the beauty is small things Yes there is a place (here!) where we really understand Yes I take comfort that I am not alone I found my peace with it I hope you can find yours Alex

It's not mine Spiny, but to me it is so recognisable. When I commute with the train and look out the window, the tracks go through a forest where alongside these images were made on fuse boxes. Hard to get close, but yesterday took some time to get really close and make some pictures. It's like the artist actually knew how I feel when the beast comes visiting me. Thought that some other may relate to this too and use a picture to show others what's it like to have this condition. All the best, Alex

Sometimes it feels like a freight train running through my head... Sometimes it feels like someone cuts a six-inch valley through the middle of my soul... And sometimes I see the true face of the beast in me... Please feel free to use this elsewhere or as avatars

Its omeprozol that i used in the beginning with every intake, now I do without. Kinda curious right now on what you mean.. is there a correlation between the stomach protection and the decrease of number of attacks?

Thanks, will post new developments and results in due time. I sometimes follow subjects where there is a mention of triptan overuse and the possibility of severe rebounds. That is not the case with me and i think it varies per person what the effect is of triptan use. I am a big guy with quite some weight and because of that I can use triptans more and more often, compared to a person with a lower body mass. All the best

Of course CHfather, sharing is caring According to the international headache society (3.2 Paroxysmal hemicrania - ICHD-3) PH can only be established when there is an absolute positive result on Indometacine. Let me explain why we (me and my neuro) are exploring this rare syndrome. Over the last two years I have turned into chronic, there was not a period longer than a month that I was in remission. The odd thing about this remission period of a month is, that literature does not state if the remission period is without or with medication. I have to say that even when there were weeks without attacks, I still used my preventative medicines; verapamil 720mg, sandomigran 3mg, naratriptan 2,5mg, D3 and the usual abortives O2 and sumatriptan. On occasions when there was too much pain and very frequent attacks I used prednisone. The prednisone tempered the severity and number of attacks, but not to zero. Back to my situation on why I went the Indometacine route. Beginning of this year the number of attacks was increasing rapidly to an average 200+ a month. On a few days I forgot to take my naratriptan, which let to almost 20 attacks that day. On discussing this with my neuro, we came to the conclusion that if I would not have taken my normal preventative medicines, the number of daily attacks would increase drastically to 20 or more. Another conclusion was that the efficacy of my meds is declining, for example when in the past a 6mg sumatriptan injection gave me 5 to 6 safe hours, no attack could break through, it now has decreased to max 2 hours. The attacks I have are not all that severe, but they are numerous, hence my situation could be marked as PH according to the ICHD-3. Since PH is quite rare and my neuro does not have any reference patients currently, we embarked on doing a little experiment in adding Indometacine to my regular medicines. According to literature if one has PH the attacks should dissolve over time using Indometacine. The minimum level where people can positively respond on Indo is 150mg. This level needs to be build up gradually starting with 25mg (plus a stomach protection) and every 4th day increased by 25mg. On 150mg I had no response so we continued to 275mg (almost at its limit of 300mg). Indometacine takes an hour to start working after intake and lasts for about 6 to 7 hours. For me there needs to be a split in doses and this is very strict. Cause in the morning I have barely any attacks, I take the first 125mg at 13:00 and the second one 150mg at 19:00, just to make sure I can counter the attacks I have in the afternoon which continue into the night. Also, I figured out that the Indo is better taken after lunch and dinner, not before or during, but this may vary per person. I am taking for granted the side effects of Indo, in my case inability to poo for days, and more importantly an hour after the Indo intake I really get tired. In the beginning of my Indo trail, I used omeprozol to protect my stomach as a remedy for the obstipation, but to no avail, so nowadays I do not use any stomach protection. Because of the gradual build it took me quite some time to get to the level where I can now say that the number of attacks has dropped from 10 to 1 or 2 a day. But. The clusterfuck about this is that I do not know whether I am slowly going into remission, end of cycle, or that I actually have a positive response to the Indo. The only way to find out is the next phase, lowering my verapamil and hope the Indo can hold the beast at bay. Not particularly looking forward to it, but it is the only way to prove if I have PH or not. Hope this sheds some light, always open to share more info and experiences. All the best

What are the moments your daughter is taking the medicines, and does she have regular bowel movements? The reason for me asking is that the last couple of months I am taking Indometacin to see if I have the rare paroxysmale hemicrania, and I tend to see a similarity between the moments I take my medicines, whether or not I can poo and my CH attacks. What I’ve learned so far is that I have to use Indometacin after lunch and after dinner, If I take them before or during, my logbook indicate I have more attacks. Also the intake moment is important, 13:00 and 19:00 sharp, where if I have not had dinner before 19:00, I skip dinner because I must have had my dinner before I take the Indo. A side effect of Indometacin is an adverse effect on my bowel movements, I can not defecate for days. I have the strong feeling that the longer the poo stays inside of me, the longer the possibility exists the waste products can swarm within my intestines/body. In turn this may elevate histamine where the D3 might not be able to fully counterattack. My situation is not the same as your daughter’s, but maybe she can take a closer look at the moments she takes the medicines and her bowel movements to see if there is a time relation between eating, pooing and attacks. All the best

Hey SaltLife, My daily dose is 720 divided over three intakes of 240 in the morning, before lunch and after dinner. I have been increasing my dosage since my first diagnosis (was 240mg) as many will tell that one needs increasingly more to prevent the beast coming out. I've been up to 940mg at times, and some have had 1100mg a day, but this can not be done without consulting a cardiologist, in fact with every increase it is good to have your heart checked first (ECG) to see if it technically capable to deal with an increase. Besides this i am in the 'chronic camp' and have more meds as preventive (triptans).

Hello Batch, Thanks for the reply, next time i will ask for the extended test as you advise, also will look into the other supplements. I am not pain free, that's the point. I am in cycle now since June last year without a pain free period longer than 4 days, so technically i am chronic now. I started the D3 regime in March last year and ramped up the D3 as per protocol. In April last year, after 6 weeks into the D3 regime, i dropped one verapamil (from 720 to 600mg) hoping that the D3 would be able to hold the beast at bay. It was not long before the beast came out to play with a vengeance, in the following months I had >200 attacks/month. Still I continued the D3 and the other meds, but had to up the verapamil again to 720 to get number of attacks below 200. Would it be possible that the D3 is just not working for me? Have you seen or heard of similar cases? Take care!

Here’s an update. Having a rough time in ClusterVille that is why I clime in late. I have my recent lab test on the vit D3. I didn’t take the vit D3 for a month and the value remains at 400+, which makes me wonder @xxx Batch. I still take the cofactors so I would expect that the stacked amount vit D3 would be metabolised anyway and should decrease over a month. But is remains at the high level. I am not inclined to start taking the vit D3 again as this might also get stacked on top of the 400+ and would further increase the level. Do you have any ideas? @spiny, yes they do allow to have O2 at home, although there needs to be sticker at your front door indicating O2 is present for the Fire Department in case of a house fire/calamity. On the meds I take, everything of which the doc felt or feels can make a contribution, so that’s currently verapamil (720mg), sandomigran (3mg), naratriptan (2,5), O2, sumatriptan (3mg and 6mg). I am hesitant to drop one as in the past is has shown doing this, the number and severity of the attacks ramp up very quickly into a high cycle with Kipp 8-9-10’s (I am chronic and have low and high cycles). So it is merry-go-round on finding out what works well besides the meds and what not. Although soft drugs are legalised here, I am not the type for busting. It is not much of a life I am living @Sue mcdonald, but adhere to what you are saying. When you can permit yourself to try something else like mineral baths and enjoying the simple things in life, you absolutely should do this. However I am in high cycle now and on a constant watch on what works and what not, so morning walks help indeed to walk off the early one, but after 4 attacks I can solve with O2, the O2 alone does not work anymore and have to use the sumatriptan, often followed by O2 to get the beast at bay for a couple of hours. I would really like to experiment with the things you suggest, but actually scared to do so as I do not know what it can invoke and have had bad clusters when I changed something in my diet for example, so it is not as easy as you say “If u want to eat something? Eat it. Be happy all u can be”. For me happiness is beyond ClusterVille. Thanks all for listening

My finger nails are curved Sue, while my nails on my toes are straight. I do not bite either haha. You mention peripheral tissues…can i mention the excess amount of callusus i have -which i can file quite often but seems not to make any difference because within days its back-or is this not related?

There are two different versions, prednisone and prednisolone. the first is metabolised in the liver to prednisolone. Have taken it multiple times during my cycles but has had not the anticipated effect on me, that is breaking the cycle. With me it only stabilised the number of attacks on a lower number...4 instead of 7 or more when I took it in the high dose period. During the tapering of the number of attacks rose again. However, other people do have the positive results of prednisolone. Pls note that taking predni increases your appetite hugely, so you might gain some weight.

Full blown chronic here too with grey/green eyes. Grey predominantly in winter, green is summer. Some say that the amount of summer light changes the colour. Pupil on the CH side is constricted, but unlike Devonrex very light sensitive before an attack, can really be painful to look into light...especially bright white light, guess it's the blue light for me. But can look into the sun, odd. Also half an hour before an attack become very hungry...graving for fat food...high energy stuff...guess body is anticipating on the energy drain during an attack...afterwards very thirsty.

@Juss Yes that is what we all read on this forum, but I have some concerns with this. If a vast amount of our cluster family is on the D3 it may seem they all suffer from hidden or underlying inflammatory issues and no one has been able to pinpoint which body tissue is attacked by the immune system? Likely that someone is suffering from for example rheumatoid arthritis as it will show quite significantly.. I've been experimenting with foods and nutrients for years now, but have not been able to see my deficits or surplus'. I've stripped by diet of anything that i thought is a trigger, trying to see parallels in food intake and my cycles. To no avail, so considering going vegan. We also agreed that I will be taking a 3month sick leave from the office. Maintaining the delicate balance between office and family is hard & exhausting and not fair to my family, my best hours I spend on office, while after dinner the attacks come and really decimate me until the next morning, repeat. I discussed with Batch last year on my D3 strategy but unfortunately it has not worked out. To gain control again when it went really bad I also had Emgality, GON injection, prednisolone etc on top of my normal medicines. I really wonder what is wrong because this is a mindfuck with attacks

I had my blood tested again as I noticed that I made a stupid calculation error in my daily intake of the D3 regime. Instead of 50.00IU per week, I have taken for several months a daily dose of 60.000IU. So my lab results are now: CRP mg/L 9 25-OH Vit D nmol/L 411 Calcium mmol/L 2.48 PTH pmol/L 0.9 Although PTH and calcium are still normal, my doc urgently suggested to stop the intake of the D3, but will continue the rest of the co-factors. In a month I will do the lab test again to see if the D3 is within the acceptable range again. But I wonder, even with the high level of D3 my 18 month cycle has not come to an end yet. Can it be that for some the D3 is not working? Is there a strong reason to even continue the co-factors without the D3 if you have a healthy diet? Appreciate your thoughts

There is no science behind the intensity of attacks, yet, although I am sure the medical world in the future will also crack this puzzle…the other puzzle is: why does the airflow through the nose aborts an attack in an early stage. They just don't know. With me the intensity is related to the cycle I am in, high or low cycle, and the kind of trigger that sets off an attack. I can have a short 3 to 4 months high cycle of 4-6 daily major attacks with KIP 7-10 (KIP is the pain scale or intensity level), or a low cycle of a year with 2-4 moderate intensity attacks a day (KIP 3-6). Also the trigger has an influence, an afternoon nap results in a higher intensity attack. You’ll find that everyone here will have their own personal experience and many will confirm that the attacks can morph over the years, in cycles and intensity. Disregard the pain levels, cycles, morphing.. the advises of the guys are absolutely valuable: get your fighting meds together and experiment with the different breathing techniques what works best/fastest to abort an attack

@jon019 @Bejeeber full submersion. I do think that vasoconstriction needs to take place on the whole body, with a partial on only the head exposed is maybe not efficient enough and still allows the rest of the blood vessels to be expanded. think it can be compared with a short of sumatriptan that also affects all the blood vessels. the Wim Hof ice baths work in a similar way, but can only take the cold submersion, not the ice baths. neuro said I need to have clearance from the cardiologist as the amount of verap I take is quite high and ice baths may have an adverse effect on my heart

My cluster eye is sensitive to bright lights, not the sun but more like headlights of a car. It hurts when I look into especially xenon light bulbs with a lot of white/blue

I learned that if I step into the cold swimming pool at the onset, within 5 minutes I can abort by inducing vasoconstriction

@Spoinka Returning to your original question, CHFather has posted some time ago an excellent overview of different triggers, ranging from foods to environmental factors that people experience. The link is below. But a trigger does not generally apply to everybody. Some experience a trigger with high pressure atmosphere, some with low, while a third person reacts on the change in pressure. The same with foods, some down a redbull on the onset of an attack, were I am completely avoiding any sugars in my diet as it will trigger an attack. I can not do a afternoon nap where others can. So, different people, different triggers. However, there is common ground on one: alcohol. People also do the 'alcohol test' to see if they are in remission: drink a beer and if an attack is there you are still in cycle. If not...well drink another one or two The overview of CHFather may give you pointers you can use on your own situation and try to see what provokes an attack and what not. Noted by many people is that CH can morph over time, the same for triggers.

@FunTimes How did it go?

Good luck!