New to this forum – Cast Iron until hit by CH

[Cast Iron]

Hi there!

 

The last year I’ve been reading this forum and although sad of course for y’all still have a feeling of ‘coming-home’.

Especially because I live at the other side of the ocean in small country the Netherlands (you know, tulips, windmills and amsterdam).

 

Recent months I read some items on Verapamil, Sumatriptan, Aimovig, Amgality and thought it might be time to chime in and share my story and experiences.

 

Clusterhead since 6 years, age 52, and although I only have one big cluster a year, my neurologist considers me to be chronic. I have built a daily medicine barrier currently using 720mg Verapamil, 3mg Sandomigran and 2.5mg Naratriptan. Because I am from the Netherlands with its beautiful dykes, the medicine barrier is like the dyke which prevents the waves from flowing over it. But in a cluster period the waves slam so hard and often, the dyke is just not high and strong enough. So the beast is always there, chronic, but in low tides constricted behind the barrier.

 

My cluster periods last between 4 and 6 months, starting with one attack a day a couple of times per week, to 4-11 attacks a day during the month and then slowly fading away again.

In the beginning of the cluster I use O2 to abort, but when the frequency and intensity is building I use the O2 for the small ones because the O2 cannot really abort it anymore, it will only postpone the unavoidable bigger attack lateron. I say the ‘small’ ones as I have classified my attacks in severity, small, medium, large, XL.     

So for small, in my book kip until 4ish, I mentally increase my pain tolerance levels, do breathing techniques and use O2.

I read that redbull is sometimes used for its sugar and taurine, but this has an opposite effect on me.      

When O2 is just not enough anymore I am entering into the medium and large attacks, kip 5-9.  

Next to O2 I then use Sumatriptan as much as physically endurable, I do not restrict myself to the two injections a day prescribed, i use up to 5 a day. Normally they work within 10-15min.

I inject them in my upper thigh, not in the fatty bits but in the muscles preferably close to the big blood vessels as the incubation is much faster.

Note, I have a vast supply of Sumatriptan and can order as much as needed. This is covered by my medical insurance contrary to many other countries where this is limited or very limited (last year I used ~400 of them).

If they do not work, I run into an XL and have to ride it out, kip 10 for 2-3hrs because Sumatriptan cannot be used twice within 2 hours.

In the weeks I am at my peak, I use 60mg prednisolon daily for 5 days in addition trying to lower the number and severity. This gives some avail in those 5 days, but the effect is gone in the days I have to slowly reduce it to zero again. I read that others here are using prednisone too, my neurologist says there is a difference between prednisone and prednisolon, the last one being quicker and more effective.

Referred to by others here, I also have a feeling that using Suma so often a day, may induce CH again. Not exactly know why this is, but not using Suma is not an option for me, because my beast is so strong and will attack when not contained.

Furthermore my memory is often lacking me and have to ask my wife about simple things that happened in the past. Does anyone of you share the feeling that with every shot of Suma, a little part of the long term memory is vanishing?

 

I have considered the D3 regime as for many here it shows a significant improvement over the use of medicines. My situation though is that I have tried a couple times in non-cluster periods to lower my Verap, but it turned out that this had a rapid adverse effect, starting a new cycle and ending up with a higher dose than before. For example lowered from 480 to 360, the CH came back and returning to 480 was not enough to prevent the CH, I had to up it to 600 to have the same effect. This makes me very hesitant to start lowering my meds and taking the D3 as this could result in a massive cycle again. Taking the D3 and maintaining my current doses would be trivial because I would not know what is actually working or not.

 

Last year I tried Aimovig. My neurologist said I had to reduce my verapamil from 840 to 480 a day to be qualified to receive the Aimovig injections, two injections of 120mg per month.

As abortive I could still use the O2 or Suma and use the Sandomigran and Naratriptan. We were kinda hoping it would work also for me, because european trails showed for some clusterheads the body could ‘learn’ that the anti-CGRP fits the CGRP receptor. It blocks the binding of the CRGP to the receptor when the CGRP is released by the body (due to unknown reasons still), so the CH is not induced. For some the body learned this within a couple of weeks, or months. But not for me, after 5 months of using Aimovig the number and severity of the attacks was so high (10/day) I had to drop out and return to high doses of verapamil to make life bearable again. European neurologists believe that the Aimovig trail dose 240mg/month for CH may not be high enough.  

 

I am thus hoping that Amgality in Europe will get the required approvals (FDA on your side of the ocean), although I read here that different dose are being applied with different outcomes. Are there any studies available yet?

When it gets the approvals here, its not said it will become available for patients in the Netherlands. We’ve seen this with Aimovig. The price of 600euro per injection is not covered by the national medical insurance system. One would say that if you can afford it privately, then just buy it, but there is a social ruling here saying that if the poor cannot have it for free under the national medical insurance system, the financially capable people cannot buy it either.

 

In the meantime one could opt for busting, paddo’s, coke (yes really, a fellow clusterhead went from 10 attacks a day to only one mild one if he sniffs a line of coke in the morning).

But there are two things: a long time ago I swore to myself never to take any alcohol and drugs, and, my neurologist says that compared to others in his patient group I am in the ‘premier league’ of CH suffers where meds are the only viable option. Speaking of which I have tried alternative therapies like acupuncture, which are not working for me either.

As a last resort, my neurologist is inclined to consider lithium should I really want to replace the Verap and the side effects of it (no stamina, short of breath, fatigue, dental problems – because verap is a calcium blocker, veins need calcium to be able to expand). But the side effects of lithium are far worse I understand and could prevent me from having a professional job. Also, it takes quite some time to get the correct dose of lithium, and requires regular blood controls, not to say the least internal organs do not really like a substance from the periodic system ‘LI’, it remains a heavy metal.

 

As for my nickname, from my teenage years my brother and I could jump higher, run faster, work harder and longer, bruises, cuts or wounds would heal much quicker than with others.

We were made from ‘cast-iron’, and the odd thing with this is that when it shows a crack it cannot be repaired, it needs to be melted and poured again in the cast.

So my current life balance is to avoid that ‘point of no repair’, disregard what it takes in terms of my current medicines and changes to my life style.

I cannot let the Beast win and have to await the next generation of medicines to become available, prescribed by MD’s and covered by the insurance, because the alternative it walking into a deserted field with a shotgun.

 

Maybe this sounds all too familiar, maybe there is some more information you can use.

[Dallas Denny]

G'mornin Cast Iron and welcome to the community....sorry you need to be here!

Excellent first post...you left nothing out for us to question you about that I can see!

I do find it sad and ironic that you live in one of the few countries where "busting" supplies are legal and readily available but your personal convictions eliminate that option!  However, that being said, I'm afraid your dependence on rather high doses of verapamil to manage your clusters would make it extremely hard for you to titrate down to a level that would  be conducive to busting anyway...

From the various reports on Emgality both here and on Facebook it seems to me that efficacy thus far is hit or miss....much like most options we have available to us as clusterheads!

Sending positive thoughts and painfree wishes from this side of the pond!

Dallas Denny 

[jon019]

Hi CI...welcome...you provide a very interesting read!

...a couple of unsolicited thoughts...cuz...why not?

...you're scaring me with all that Suma...maybe I missed it but are you splitting doses or using vials so you can titrate just the right amount? I could get by with 2 mg per hit...6 mg was way too big a hammer!. There are no absolutes in clusterville... but general thought is that Suma can cause rebounds or negatively affect cycle...and the side effects can be significant. Sounds like you know all this but....

...a little puzzled by the reluctance to try the D3 regimen...I won't try to sell it, perhaps Batch will stop by with THE word...but with your current regimen of what sounds like to me a bucketful has got you at a stasis that is only somewhat acceptable... so you are looking for more. If you were to try the D3 I don't think it would be unknown if it is efficacious or not...either you improve or not. If ya do...you can start eliminating the other meds and all their side effects for a much safer supplement centric regimen...

best

jonathan

[CHfather]

6 hours ago, Cast Iron said:

But there are two things: a long time ago I swore to myself never to take any alcohol and drugs, and, my neurologist says that compared to others in his patient group I am in the ‘premier league’ of CH suffers where meds are the only viable option.

As jon' says, what you choose is what you choose, but many of the people who have benefited from busting have been in that premier league of sufferers. The idea that "meds are the only viable option" for you is both silly and true.  Psilocybin, LSD, and LSA used to treat CH are "meds" in the same way that what you are taking are meds -- except that psilo etc. in effect have none of the side effects that you are very reasonably concerned about.  Psilo will be an official "med" within a few years, you can bet on it.  The D3 regimen, which is supplements but not "meds,"  has helped people who are in that same premier league as you, and who are actually chronic as opposed to be said by their doctors to be chronic.

Overall, I think you are putting much too much reliance on things your doctor says and beliefs that you have adopted.  As jon' says (or suggests), your doctor is letting you kill yourself with triptans, and overuse of triptans is shown to make attacks worse and cycles longer.  I think you might be in a  situation where what you think is helping you is actually making things worse, causing you to then use more of it and continue the cycle.

6 hours ago, Cast Iron said:

although I only have one big cluster a year, my neurologist considers me to be chronic.

This also doesn't make sense, at least to my way of thinking.  Chronic is chronic.  If you have time off from attacks, you're not chronic. It doesn't really matter for treatment purposes (except, for example, that lithium is usually recommended to be prescribed only to chronic patients because the rebound attacks if you stop taking it are so severe). 

6 hours ago, Cast Iron said:

In the weeks I am at my peak, I use 60mg prednisolon daily for 5 days in addition trying to lower the number and severity. This gives some avail in those 5 days, but the effect is gone in the days I have to slowly reduce it to zero again. I read that others here are using prednisone too, my neurologist says there is a difference between prednisone and prednisolon, the last one being quicker and more effective.

Prednisolone is what prednisone is metabolized to by the liver.  The dosage and duration you're taking of prednisolone are essentially the same as they would be with prednisone, and the effects seem to be about the same. Prednisolone is generally more expense.

6 hours ago, Cast Iron said:

I read that redbull is sometimes used for its sugar and taurine, but this has an opposite effect on me.  

It's primarily the caffeine in RedBull that seems to be beneficial for aborting or reducing a CH attack.  Many people use sugar-free versions of energy drinks with good effects.  But if RedBull increases the severity of your attacks, then it's clearly not for you. (It's very unusual for that to happen.)

6 hours ago, Cast Iron said:

When O2 is just not enough anymore I am entering into the medium and large attacks, kip 5-9.

I have to wonder whether your O2 system is optimized.  Do you have a flow rate of up to 25 litres per minute?  Are you using an effective mask? (at the least, a non-rebreather mask, but better would be the mask specifically designed for people with CH).  Is it O2 from a cylinder or tank (not from a "concentrator")?  Are you breathing deep, holding, and then expelling all the air you can from your lungs?  Fully effective O2 is the key to better treatment of your condition, in my opinion.

6 hours ago, Cast Iron said:

720mg Verapamil, 3mg Sandomigran and 2.5mg Naratriptan

Sandomigran is indeed a somewhat effective preventive, but it's low on the list of recommended prescriptions because of the side effects.  You probably arrived at all this by trying a lot of things that didn't work, so, again, if it's what you choose, it's what you choose, and we can all hope that the dike will hold for you.  I'll say again that if you can get your O2 working better, you'll have the option to consider alternatives to this and all those (other) triptans you are using, and I think that might be a good thing.

[Cast Iron]

Hi DallesDenny

 

Thanks for the warm welcome.

It is indeed ironic that I live in a country where we can legally shop for it.

On the amgality I also have the impression that it works or not.

Aimovig and Amgality work in the same way, tricking the system by binding to the receptor.

For some it works for others not. I do have my hopes up high that Amgality uses just some other ingredients that are recognised by my body to make the receptor link possible.

 

All the best

[Cast Iron]

Hello Jon019.

 

On the Suma, yes I do take the full shot every time.

Let me give some background. I am a big guy, body and strenght of an ox.

When I need to have local anesthesia my body breaks down a regular dose of say lidocaine within 15min where physicians normally count it will last 2hrs.

So I always ask for 4 shots to make sure they can finish their work.

The same with the sumatriptan, I need to have the 6mg, despite the big hammer every time, also because in high tides the frequency is so high it allows me to recuperate a little before the next one is hitting. Yes, you can question cause and effect/rebound, but I have to prevent I end up 2 or 3 times a day with a kip 10 attack.

 

On the D3 it is not reluctance, for me this is the scary bit. I have more or less control over my current situation, or know what to expect.

Suppose I would take the D3, if I want to know if it has an effect, I need to lower my meds to be sure.

This is what scares the living jesus out of me, as I the past I’ve tried to lower but ended up close to 1gr of verap and 180 attacks a month.

 

All the best  

[Cast Iron]

Hi CHFather,

Completely right that I have made choices, this is also due to ignorance/lack of knowledge on other possibilities.
So its so good for me this forum exist, I signed up and now provides me a mirror.

I’ll try to answer your remarks and suggestions to give a better view.

Not using the ‘happy stuff’ with busting was a deliberate choice a long time ago, let me say, I’ve seen the very negative effects of alcohol and drugs up close and personal.

When you say “If you have time off from attacks, you're not chronic”, does this mean that in the off period no medicines are taken/needed?
From my point of view one can have a chronic condition, where on certain periods it inflames and medication is needed (like COPD).
Could it for chronic well be possible that medication is needed constantly to prevent inflammation?

For the redbull, especially caffeine counteracts with my sleeping disorder (also sugar for that matter). I have a second neurologist and diagnosed with OSAS, I stop breathing in my sleep every 3 minutes. To allow for some night rest, even though wearing MRA dental braces, I can not take any sugar and caffeine as this will give energy making me even sleep less than 5hrs a night.

The O2 is well in order. I have big tanks and small ones for travelling, possibility to crank up to 25l/m, special mask and do apply the breathing techniques.
 
Many thanks for the constructive feedback

[CHfather]

I'm sorry I don't have more to offer you. It sounds like you have been sensible about what you have chosen, given all the factors you have described.  I'm going to quibble with you about two things, if only for future reference in case the dike springs a leak.  If you do the D3 regimen while everything else you're doing to treat your CH is the same, and you feel that your situation has improved, you can at least tentatively attribute the improvement to the D3, and begin seeing what happens if you reduce some of the other meds.  It's not the best situation to be in to play with something that is working, but over the longer run it will be greatly beneficial to you if a more natural, less damaging approach such as D3 works as well as the pharmaceuticals you are using. (I do understand that the "long run" isn't very interesting when you're risking severe attacks right now, so I'm only offering this perspective.)  

(It's a strange thing about CH. I was talking just the other day with a fellow who was in remission for a couple of years, which he attributed to the 1200mg of verapamil he was taking every day.  At some point, a doctor told him it was going to be very bad for him to keep taking that much verapamil, so he started to lower his doses.  As he lowered them, the attacks didn't come back.  He's been off all verapamil for several years now, and still hasn't had an attack (full disclosure: he does have shadows every day). I am not saying at all that anything like that could be the case for you. I am just saying how much we don't know about what is actually helping and what isn't.)

Second, I have no desire to convince you to use any substances you don't want to use, but I don't think we've seen anyone here whose life has been taken over by psilocybin and other substances used to treat CH, in the way that addicts' lives can be taken over by "hard" drugs. If you were some day to try this, a substance like rivea corymbosa seeds can treat CH without even giving you any kind of "trip."  Since you live in a place where some recreational drugs are legal, you might have seen more "hard cases" associated with psilocybin than I imagine there are . . . and of course the leap of faith to stop the triptans and try "busting" would have to be enormous for you. For some, it has been a "leap of desperation" more than a "leap of faith," and I hope you don't ever get to that desperation point.

(I guess this is a question regarding O2. I'm sure you have thought of this, but I just want to make sure it's said.  As a big strong guy, you might well have very large lung capacity.  If you are using a proper breathing technique, perhaps even hyperventilating, I can imagine that you sometimes have to wait for the bag on your mask to refill before you can take another full, deep breath.  Really, that is the standard for flow rate -- can you use the best possible breathing technique without having to slow down or modify that technique because there isn't enough flow to the bag. If this is an issue for you, then you would want a flow rate even higher than 25 lpm.  We have seen some highly fit people need flow rates of 40 and even higher to keep up with their lung capacity.  A demand valve system is particularly valuable in a situation like that.)

My best wishes to you.  My father came to the US from the Netherlands when he was a boy, and Dutch, not English, was the language spoken in his home here in the US.  I'm sorry to say I never learned any, but I do still feel an affinity toward folks from my ancestral home.

[Cast Iron]

No need to be sorry for anything, it is me to say in Dutch “Dank je wel”, for your answers and quibbles, they are brainfood I can only get from other clusterheads.   

I do agree with you that the parameters that induce and can abort CH are very different per person. Besides they can morph over time, without giving upfront notification in writing (hihi) that we need to adjust in accordance. That is why for me I have a constant mindfuck on what to do, and what not, what is sensible or not. Also part of the mindfuck is that I came to realise that my body is not able to do anymore what I used to be doing, or probably will not be able anymore in the near future. Luckily my QT in the periodic ECG is still looking good. 

I’ve reached a couple of times the point of desperation, but always thought in time that I have two young daughters. I will read up more on the D3. You have a good point on the higher flow rate. I do recognise the hyperventilating up to the point of passing out. I never actually realised that O2 probably behaves with me like all the other medicines I have taken, meaning that I need more because of my physical constitution.

All the best

[xxx]

Hey Cast Iron,

I made several trips to your country between 1997 and 2003, mostly to Den Haag to work at the SHAPE Technical Centre.  Den Haag was great and so was Amsterdam, but I loved Scheveningen.   Great little seaside restaurants with wonderful food.

Getting to your problem, I suspect you are vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH.  Baseline lab tests by CHers reporting in this survey, before starting this regimen are illustrated in the following normal distribution curve.  The normal reference range for the 25(OH)D3 lab test is 30 to 100 ng/mL (75 to 250 nmol/L).  Most CHers experience a favorable response to this regimen with a mean 25(OH)D3 serum concentration around 80 ng/mL.

We've made some important changes to the anti-inflammatory regimen and treatment protocol.  The most significant change occurred in July of 2018 with the switch from the oil-based liquid softgel vitamin D3 formulations to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3.  Several of us found it faster acting with a higher bioequivalence in elevating serum 25(OH)D3 than the same dose of the oil-based liquid softgel vitamin D3 formulations.  The following photo illustrates the supplements I take and now suggest to other CHers.  Most CHers in Europe have found they can order these supplements through iherb.com.

I just crunched the numbers from the online survey of CHers taking this regimen as of 31 December 2019.  There was a significant increase in the efficacy of this regimen during 2019.  Over 90% of CHers starting this regimen in 2019 experienced a significant reduction in the frequency of their CH from 3 CH/day down to 4 CH/week in the first 30 days.  Moreover, 67% of CHers starting this regimen in 2019 experienced a sustained cessation of CH symptoms in the first 30 days. 

Although I can't say for sure, it appears this increase in efficacy is likely due to the switch to the Bio-Tech D3-50 as nothing else has changed.  I track all the other CH prophylaxis and none of them come close to this level of efficacy, let alone at a cost around 50 cents/day USD with no adverse events.

I've made some changes to the treatment protocol that include new target 25(OH)D3 serum concentrations and longer vitamin D3 loading schedules to reach these new targets.  These changes will appear in the updated version of this treatment protocol I hope to post on my web page at vitaminDwiki.com later this month.  These changes include:

New TGT 25(OH)D Concentrations  - New Loading Schedules
Episodic CHer 80 to 100 ng/mL.       - Load at 50,000 IU/day for 12 - 14 days
Chronic CHer 90 to 120 ng/mL.         - Load at 50,000 IU/day for 14 - 16 days
Migraineurs 100 to 140 ng/mL           - Load at 50,000 IU/day for 16 - 18 days

It's important to understand these suggested 25(OH)D3 serum concentration target ranges and loading schedules are a starting point for the average ECHer, CCHer and migraineur.  Many CCHers (like me) will require a higher 25(OH)D3 serum concentration, a longer period of loading at 50,000 IU/day and a higher maintenance dose to experience and maintain a CH pain free response.  In practice, CHers can start the accelerated vitamin D3 loading schedule and stay on it until they experience a favorable response then add an extra two days at 50,000 IU/day to build a reserve then drop back to a maintenance dose of one (1) D3-50 a week. 

I've also added some other supplements needed by migraineurs  and some chronic CHers taking this regimen that are illustrated in the following photo of what I take daily.

There are other go-to supplements that can be taken in the event the above are not resulting in a favorable response, but I think you have enough to go on should you decide to try this regimen again.

Take care and please keep us posted.

V/R, Batch

[Cast Iron]

Hello Batch,

Yes I do feel fortunate to live here, we have a combination of very old cities and hyper modern, its what visitors and tourists really can value over here.

We are getting close to spring and than we have the wonderful fields of tulips again which are really photogenic:

Many thanks for the time you've spent replying, next week I have a doctors appointment to determine the baseline through the lab tests.

I already found the nutrients and going to order them. As soon as I have the lab results I will chime in again.  

Best regards!