Steroid and verapamil made my cycle worse?

[Moona]

Hi all. 

Im a newbie here but not a newbie to cluster headache. 

I am 33 and have been suffering from the past 15 years with episodic cluster headache. However, i was only correctly diagnosed 4 years ago. I had the longest remission since then, until april 2022 when they came back. 

My neurologist started me on verapamil and short 10 day course of steroid 40mg. I was absolutely pain free while i was on steroid. But i was advised to stop them without tapper, and as soon as i did, i started to get worse attacks and persistent shadows. I wasnt aware of shadows until this cycle, since i never had them before. I was still on low dose of verapamil. So was started on steroid again with gradual taper over 20 days, meanwhile gradual titration of verpamil until i reached 40-120-120.

After stopping steroids, i still had some bad attacks but it settled. Meanwhile, effect of verapamil kicked in and i started to get less and less attacks until i went 1 week without attacks. Sadly, because of some insurance issues, i ran out of verapamil for 2 days and as soon as i started them again, pain became worse. About 4-5 attacks per day, only partailly responding to oxygen amd persistent debilitating shadows. 

Now, 2 months into my cycle and 1 month after stopping steroid, the neurologist has again started me on short course of steroid 40 mg for 7 days. I feel better already but my greatest fear and anxiety now is that all the treatments has just made the cycle worse and so prolonged? 

I never took all these treatments before because i was never correctly diagnosed. 4 years ago, i only used oxyegn as an abortive.but my cycle always ended on its own in 4-6 weeks. 

I feel all the preventive have made it so worse. And my greatest fear is that i will never be able to get off them and this feeling makes me so depressed and suicidal. 

Please share in your thoughts and advice. 

[BoscoPiko]

Hi Moona,

Sorry you're down in the dumps rt now. I have never taken a steroid for my ECH but I have been on verapamil for about a year and a half. I do recall the verapamil taking a bit to start helping cut back the frequency of my attacks. It does not stop the attacks but I have far fewer than what I did prior to being on it. I try not to be down on myself for needing to take it or anything else for that matter that will help keep the beast at bay. You gotta do what ya gotta do because living with cluster is not really living at all.   I have seen some posts on here about the steroid being used as a bridging of sorts to help you make it through while the other preventative takes hold so the fact that you went without the verapamil for a bit after you dropped the steroid may have got your system messed up and or set back for a few. 240 or 280 (if that's what you meant with the 40-120-120) total for the verapamil sounds low and I only started getting any results with upwards of 480mg a day. You really need to look into the D3 regimen, it has helped me out a ton and many stop the verapamil for good once the D3 gets rooted. Red bull, 5 hour energy shot or cold coffee prior to the O2 really helps give the oxygen a boost and sometimes just the caffeine can help lots. I have had bad shadows most of my CH career but have found that RC seeds and Curcumin with ginger really knocks the shadows out. Hang in there and around here as this is the place to be to find help with your CH! Feel better soon!   

[CHfather]

This sounds kind of nuts.  You can't keep taking steroids -- once a year is the recommended maximum (although some of your courses have been relatively short, so it's not like you've done it three times).  I don't know whether what's going on is making your cycle worse (sometimes they're just worse), but I think there are some things to do.

280mg/day of verapamil (if I'm reading you right) is still not a very substantial dose, so that could go considerably higher.  But if you're going to get titrated slowly higher, that will take time . . . and verapamil can be bad for you, too.  I think we would recommend that your first steps would be to start the Vitamin D3 regimen ASAP and make sure your oxygen system is optimized.  The D3 regimen is described here http:// https://vitamindwiki.com/Cluster+headaches+virtually+eliminated+in+7%2C000+people+with+high-dose+vitamin+D+and+cofactors+-+Feb+2022, and you can get lots of help from folks here with understanding it and doing it right.  Your O2 system should of course be from a tank/cylinder (not a concentrator), using a nonrebreather mask or, even better, the mask designed for people with CH.  The flow rate of your regulator should be sufficient that you can inhale and exhale deeply and never have to wait for the bag on your mask to fill before you do your next inhale.  And you should be sure that you are using a good breathing method and you probably should do as most people do and get some caffeine in you as you start the oxygen.  There is info about all this (and a lot of other stuff) in this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Beyond those basics, I think we would urge you to consider busting (the essence of which is described at the end of the file I just gave you the link for).  I would also think that in the short run, aborting with a triptan (Imitrex, Zolmitriptan...) is better for you than the steroids, particularly if you split the Imitrex doses. https://clusterbusters.org/forums/topic/2446-extending-imitrex/    

To me, the main thing is to get stabilized without steroids, and find the strategies that will be most reliable for you over the long run, with the least side effects.

 

[spiny]

Hi Moona. Ouch. It hurts to read this. I was on Verap too and my dentist talked me out of taking it one summer. It never worked again at the levels my body could handle, so I feel your misery to some degree. It is also how I arrived at this site some years ago.

Not doing a taper of the Pred was irresponsible, I think. Backing up and starting over due to his/her mistake is baffling to me. Insurance messing with you on refill dates is way too common these days too!! Not like it was Oxy, right? 

The Pred will normally stop the pain until it is tapered down to your personal cutoff point. Meaning that we are all different. For me, below 20mg/day and they return. Others have different amounts that allow the CH to blast back in. The Pred is supposed to be used as a 'bridge' to get you out of pain while the Verap builds up in your system. It sounds like it was prescribed correctly the second go around, but it may be that the damage was done in the relief department. Most take over 320/day for relief, with some going up to over 900mg/day.  Verap is not great for your body and many doc's won't give the higher dose that many require. And at 240 or 320/day is not high enough to work for some. It lowers your blood pressure and that needs to be monitored. So, that is a limiting factor on how much you can take too. 

You have O2 and abort with that now, right? It is still your best friend. Add in some caffeine and you can abort almost all of your hits. Of course that is not the final result any of us want, we want to be pain free.

Next up in the ease of application is the D3 Regimen. I will attach the one that I take. It was the first iteration of the protocol. Here is the link: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 These vitamins have an amazing track record for many of us. It will slow the ramp up of pain and lower the max pain level reached too. That alone is worth swallowing a few pills a day. Ok, more than a few, but they are vitamins and good for you. Many Chers have low D3 levels. It should be 80 - 100mg/ml when you get blood work. It is suggested to get your D levels checked before or soon after starting the D3 Regimen. 

I see that CHF has attached the later version of the Regimen. It has more stuff in it and many do go that route. 

I think that you will feel better and more optimistic if you taper off the meds - Pred and Verap - and run with the D3, O2, some caffeine, and perhaps toss in some ginger for shadows if needed. It really works for many. If it does not put you in a pain free position, there are other things to add that won't mess with your body like what you are currently taking. You can start it right away too. No doctor needed. You can even order the D3 test yourself in the states. 

All the best and hang in there. You are among friends here and we have been in your shoes too. Kinda nice for a Clusterhead. 

[Moona]

13 minutes ago, BoscoPiko said:

Hi Moona,

Sorry you're down in the dumps rt now. I have never taken a steroid for my ECH but I have been on verapamil for about a year and a half. I do recall the verapamil taking a bit to start helping cut back the frequency of my attacks. It does not stop the attacks but I have far fewer than what I did prior to being on it. I try not to be down on myself for needing to take it or anything else for that matter that will help keep the beast at bay. You gotta do what ya gotta do because living with cluster is not really living at all.   I have seen some posts on here about the steroid being used as a bridging of sorts to help you make it through while the other preventative takes hold so the fact that you went without the verapamil for a bit after you dropped the steroid may have got your system messed up and or set back for a few. 240 or 280 (if that's what you meant with the 40-120-120) total for the verapamil sounds low and I only started getting any results with upwards of 480mg a day. You really need to look into the D3 regimen, it has helped me out a ton and many stop the verapamil for good once the D3 gets rooted. Red bull, 5 hour energy shot or cold coffee prior to the O2 really helps give the oxygen a boost and sometimes just the caffeine can help lots. I have had bad shadows most of my CH career but have found that RC seeds and Curcumin with ginger really knocks the shadows out. Hang in there and around here as this is the place to be to find help with your CH! Feel better soon!   

Thankyou so much for your kind response. 

Yes, its 280mg only. Actually, the neurologist only prescribed 40mg twice a day for 3 months. And i had to increase my self to this regimen and thats how i got run out of it and had insurance issue. 

Sadly, i cannot find an expert neurologist in this field. Hence, the dilemma. Now, he has increased it to 80mg twice a day. So im afraid of running out again if i increase more. Will definitely try the vit d3 regimen as i can get it over the counter. 

Can u please elobrate on the red bull part as i didnt understand it well. 

I really really appreciate your feedback and your kind words. I cannot express enough. 

Wish u good health

[BoscoPiko]

7 minutes ago, Moona said:

Can u please elobrate on the red bull part as i didnt understand it well. 

Many find that if you quickly down some sort of caffeine prior to getting on the O2 it helps to abort the attack quicker. Not sure why just that it helps..  

[Moona]

37 minutes ago, CHfather said:

This sounds kind of nuts.  You can't keep taking steroids -- once a year is the recommended maximum (although some of your courses have been relatively short, so it's not like you've done it three times).  I don't know whether what's going on is making your cycle worse (sometimes they're just worse), but I think there are some things to do.

280mg/day of verapamil (if I'm reading you right) is still not a very substantial dose, so that could go considerably higher.  But if you're going to get titrated slowly higher, that will take time . . . and verapamil can be bad for you, too.  I think we would recommend that your first steps would be to start the Vitamin D3 regimen ASAP and make sure your oxygen system is optimized.  The D3 regimen is described here http:// https://vitamindwiki.com/Cluster+headaches+virtually+eliminated+in+7%2C000+people+with+high-dose+vitamin+D+and+cofactors+-+Feb+2022, and you can get lots of help from folks here with understanding it and doing it right.  Your O2 system should of course be from a tank/cylinder (not a concentrator), using a nonrebreather mask or, even better, the mask designed for people with CH.  The flow rate of your regulator should be sufficient that you can inhale and exhale deeply and never have to wait for the bag on your mask to fill before you do your next inhale.  And you should be sure that you are using a good breathing method and you probably should do as most people do and get some caffeine in you as you start the oxygen.  There is info about all this (and a lot of other stuff) in this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Beyond those basics, I think we would urge you to consider busting (the essence of which is described at the end of the file I just gave you the link for).  I would also think that in the short run, aborting with a triptan (Imitrex, Zolmitriptan...) is better for you than the steroids, particularly if you split the Imitrex doses. https://clusterbusters.org/forums/topic/2446-extending-imitrex/    

To me, the main thing is to get stabilized without steroids, and find the strategies that will be most reliable for you over the long run, with the least side effects.

 

Thankyou so much for your kind response.  

I read the links that you shared and they are so helpful. I cant thank you enough for them. 

Yeah, i believe everything is messed up in my cycle, not sure like you said, if it is from wrong treatment or its just bad. 

Will try the D3 regimen. I do have the oxygen cylinder at home and the non rebreather mask and i am able to abort attack with it, most of the times. But its the lurking shadows that are so annoying. 

Imitrex injection is not available here sadly. I live in KSA. The nasal spray is available but the dr didnt write that as well. He just wrote imitrex tablets, which are of no use, whatsoever. 

Our biggest dilemma is not able to find the right doctor, perhaps. 

I hope i can get all the steroids and verapamil from my system soon

[Moona]

19 minutes ago, BoscoPiko said:

Many find that if you quickly down some sort of caffeine prior to getting on the O2 it helps to abort the attack quicker. Not sure why just that it helps..  

Noted. Thanks

[Moona]

35 minutes ago, spiny said:

Hi Moona. Ouch. It hurts to read this. I was on Verap too and my dentist talked me out of taking it one summer. It never worked again at the levels my body could handle, so I feel your misery to some degree. It is also how I arrived at this site some years ago.

Not doing a taper of the Pred was irresponsible, I think. Backing up and starting over due to his/her mistake is baffling to me. Insurance messing with you on refill dates is way too common these days too!! Not like it was Oxy, right? 

The Pred will normally stop the pain until it is tapered down to your personal cutoff point. Meaning that we are all different. For me, below 20mg/day and they return. Others have different amounts that allow the CH to blast back in. The Pred is supposed to be used as a 'bridge' to get you out of pain while the Verap builds up in your system. It sounds like it was prescribed correctly the second go around, but it may be that the damage was done in the relief department. Most take over 320/day for relief, with some going up to over 900mg/day.  Verap is not great for your body and many doc's won't give the higher dose that many require. And at 240 or 320/day is not high enough to work for some. It lowers your blood pressure and that needs to be monitored. So, that is a limiting factor on how much you can take too. 

You have O2 and abort with that now, right? It is still your best friend. Add in some caffeine and you can abort almost all of your hits. Of course that is not the final result any of us want, we want to be pain free.

Next up in the ease of application is the D3 Regimen. I will attach the one that I take. It was the first iteration of the protocol. Here is the link: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 These vitamins have an amazing track record for many of us. It will slow the ramp up of pain and lower the max pain level reached too. That alone is worth swallowing a few pills a day. Ok, more than a few, but they are vitamins and good for you. Many Chers have low D3 levels. It should be 80 - 100mg/ml when you get blood work. It is suggested to get your D levels checked before or soon after starting the D3 Regimen. 

I see that CHF has attached the later version of the Regimen. It has more stuff in it and many do go that route. 

I think that you will feel better and more optimistic if you taper off the meds - Pred and Verap - and run with the D3, O2, some caffeine, and perhaps toss in some ginger for shadows if needed. It really works for many. If it does not put you in a pain free position, there are other things to add that won't mess with your body like what you are currently taking. You can start it right away too. No doctor needed. You can even order the D3 test yourself in the states. 

All the best and hang in there. You are among friends here and we have been in your shoes too. Kinda nice for a Clusterhead. 

Thankyou. 

Its sad to read that you have been at my place. I wish, no one ever had to. I regret the moment, i started steroid and i ended them and the moment i started verapamil and i ran out of them. 

Although, there were days, when i was not correctly diagnosed. I didnt have oxygen to abort my attacks and when i think of those times, when i actually had to survive every minute of that agony, i cannot believe i actually survived it. 

Yes, now oxygen is my best friend. But i guess the chronicity of the symptoms is just making me so anxious and depressed. I hope i can survive this entirely messed up cycle. 

Thanks for all the help. 

[Bejeeber]

34 minutes ago, Moona said:

Sadly, i cannot find an expert neurologist in this field

This is a common issue for CH'ers unfortunately. I don't know if it could be a possibility in KSA, but especially since the pandemic, virtual doctor appointments became more commonplace in various regions, so just mentioning that in case you haven't looked into it yet, in hopes a headache specialist might be available that way.

56 minutes ago, CHfather said:

You can't keep taking steroids

You've happened upon advice in this thread from some of the world's most informed lay experts on effective ways to combat CH, @CHfather is one of them, and he's right about those steroids. My anecdote is I'm still trying to recover 33 years later from a too-long-on-prednisone stunt I had pulled out of desperation, and at this rate it doesn't look like any full recovery is ever going to occur! Also I found that following my numerous other pred tapers, the CH did seem to want to come back with a vengeance. 

I've found busting to have been more effective than any drugs for prevention, but I won't be surprised if your remission chances will be high with just the D3 regimen, if that is your main option for effective non-toxic prevention.

[spiny]

Yes, you can survive!! We all wish that no one had gone through this disease and wish that it did not exist. But, in our wishing there is also the wish to meet others who actually know our pain and want to know how we get through our days and nights. That alone can help us get through the tough times a bit easier. We have each other to learn from and lean on if needed. Like your O2, we are friends, just not as close.

I truly understand your regret. Been there and done that, you know? But it did not end my world. There is HOPE and there is HELP!! You have taken a step and reached out to a great group of people who have been in the same boat and have held the same paddle that you are using now. We hang together to help each other. Get some relief from the suggestions you have been given. Private message anyone and likely you will get a personal response. Yes, you are half a world away, but we Clusterheads keep weird hours!!  

Hang in there! We have a lot of suggestions for killing a hit and silly things that we have done and found help in doing them. Like a face plant in snow, a screaming hot shower followed by ice cold finish. Yea, we are a creative bunch here. 

[Shaun brearley]

55 minutes ago, Moona said:

 Actually, the neurologist only prescribed 40mg twice a day for 3 months. And i had to increase my self to this regimen and thats how i got run out of it and had insurance issue

Wow please don't increase varapamil without your neuro's say so . It's so dangerous every increase you need to get an ECG done as it's a blood pressure medication and can give you heart block . Get on the D3 vitamin regimen it works wonders . Can't really add anything else as @BoscoPiko  and @spinyand @CHfather as always have covered everything expertly.  Really hope you find what works for you . 1 thing I will tell you is you have found a great community of people here , sufferers and carers who all understand what your going through and we are all here to help . 

[Moona]

35 minutes ago, Bejeeber said:

This is a common issue for CH'ers unfortunately. I don't know if it could be a possibility in KSA, but especially since the pandemic, virtual doctor appointments became more commonplace in various regions, so just mentioning that in case you haven't looked into it yet, in hopes a headache specialist might be available that way.

You've happened upon advice in this thread from some of the world's most informed lay experts on effective ways to combat CH, @CHfather is one of them, and he's right about those steroids. My anecdote is I'm still trying to recover 33 years later from a too-long-on-prednisone stunt I had pulled out of desperation, and at this rate it doesn't look like any full recovery is ever going to occur! Also I found that following my numerous other pred tapers, the CH did seem to want to come back with a vengeance. 

I've found busting to have been more effective than any drugs for prevention, but I won't be surprised if your remission chances will be high with just the D3 regimen, if that is your main option for effective non-toxic prevention.

Yes. Virtual appointment is an option but basically, i wont be able to get any medicine this way. Here, every thing works on insurnace and these virtual appointments would be fruitless. 

Everyone here on this forum has been so kind and helpful. I already feel like family. 

I cannot undo what has happend already. I do wish that some thing will work for me and coming days will be better. 

Thanks a lot

[Moona]

20 minutes ago, Shaun brearley said:

Wow please don't increase varapamil without your neuro's say so . It's so dangerous every increase you need to get an ECG done as it's a blood pressure medication and can give you heart block . Get on the D3 vitamin regimen it works wonders . Can't really add anything else as @BoscoPiko  and @spinyand @CHfather as always have covered everything expertly.  Really hope you find what works for you . 1 thing I will tell you is you have found a great community of people here , sufferers and carers who all understand what your going through and we are all here to help . 

Thankyou for the advice. 

Yes, i have been monitoring the ECGs. Actually im a physician myself, working as a junior doctor in CCU. So i am watchful for that. 

Thankyou for the support. 

Means a lot 

[Moona]

24 minutes ago, spiny said:

Yes, you can survive!! We all wish that no one had gone through this disease and wish that it did not exist. But, in our wishing there is also the wish to meet others who actually know our pain and want to know how we get through our days and nights. That alone can help us get through the tough times a bit easier. We have each other to learn from and lean on if needed. Like your O2, we are friends, just not as close.

I truly understand your regret. Been there and done that, you know? But it did not end my world. There is HOPE and there is HELP!! You have taken a step and reached out to a great group of people who have been in the same boat and have held the same paddle that you are using now. We hang together to help each other. Get some relief from the suggestions you have been given. Private message anyone and likely you will get a personal response. Yes, you are half a world away, but we Clusterheads keep weird hours!!  

Hang in there! We have a lot of suggestions for killing a hit and silly things that we have done and found help in doing them. Like a face plant in snow, a screaming hot shower followed by ice cold finish. Yea, we are a creative bunch here. 

May you never have to face any suffering in your life. May God be with you and your family always.

I can but only wish happiness and blessings your way. 

You have been so kind. 

Respect. 

[BoscoPiko]

I hope you don't feel overwhelmed by all the responses as it can be hard to keep up with when distraught and in pain. At the same time I hope you understand that folks here understand what you are going through and it breaks hearts to see or hear of someone struggling as we all have and are where you are now and again. Chin up, left foot forward, rt hand slightly behind the left and don't forget to pivot the rt knee when throwing a rightie or visa versa if your a lefty! Knock it the heck out! Prayers for you!

[Moona]

8 hours ago, BoscoPiko said:

I hope you don't feel overwhelmed by all the responses as it can be hard to keep up with when distraught and in pain. At the same time I hope you understand that folks here understand what you are going through and it breaks hearts to see or hear of someone struggling as we all have and are where you are now and again. Chin up, left foot forward, rt hand slightly behind the left and don't forget to pivot the rt knee when throwing a rightie or visa versa if your a lefty! Knock it the heck out! Prayers for you!

Thankyou for your kindness