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Cluster Dave

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Posts posted by Cluster Dave

  1. Here in Canada if I was caught with MM's would probably be a small fine and if a judge knew why I was taking them would probably be the smallest fine he could give, so not to concerned about that aspect of taking them.

    They work well for me on most cycles but once in a while a cycle comes along like the one I am in now and they don't work at all for me. So now I am going around in circles with prednisone and Almotriptan both of which are short term fixes which are not good.

    Still looking for another option, I started the D3 regime a week ago but so far has not helped.

    Have you tried the D3 regime ?

    Thanks Dave

  2. 4 hours ago, devonrex said:

    Lucky me, chronic refractory. Have not had a full 24 hour pain free day in 3 years. The only saving grace is '10' attacks come only a couple times a week. 

    Wow sorry to hear that, do the MM's help with the pain level and O2 take care of the rest ?


  3. 7 hours ago, spiny said:

    Are you trying Melatonin or Benadryl at night? I would add the Benadryl - 2 at bedtime. If they don't make you too sleepy, you can take one at a time during the day. Read the bottle.

    I do not suggest you add both at the same time. Your balance may be wonky and be an issue getting around during the night. So, perhaps try adding the Benadryl first.


    I have added Benadryl about 10 times here and there but I have yet to notice any difference. 

    Thanks Dave

  4. Hi Spiny

    Glad to hear that the D3 regime is working for you as well as your other precautions.

    I am on day 6 of the regime hopefully it kicks in soon as I am still suffering. 

    In the last 5 years MM's have helped me tremendously even though looking back 5 years ago and 2 years ago there is a cycle that comes up that nothing seems to help. 

    Like the one I am in now which is the worst I have ever experienced and the longest lasting as well.

    Hopefully the D3 regime can help on this cycle. Still taking Almotriptan otherwise it would be one hit after another all night long. 

    Thanks Dave

  5. Wow Spiny and devonrex are you both chronic or episodic ?

    I took Almotriptan for the beast and Tegrotol for the TGN pain last night and it bought me a straight 4 hours of sleep.

    I am on my last week of vacation time before I head back to work so I have to get a handle on these, going to call the physician for Varapamil. At least get the prescription and have it on standby.

    Full on with the D3 regime with Batch, he has been fantastic in helping me. Hoping it helps before I have to try Varapamil and the dreaded prednisone. 


  6. Last night I had a headache with extreme facial and trigeminal nerve pain that lasted for hours.
    Normally my cluster headaches last 40 minutes from start to finish then I get a break until the next on hits. Not this time though.
    Had to do 2 rounds of O2 before any relief where as usually 1 round of 10 minutes will provide relief.
    Has anyone heard of a cluster headache lasting hours, I haven't so there is more to this cycle, has anyone else come across headaches that last hours and if so what was the cause ?
  7. Surprised me too. The good part is this morning as the prednisone is wearing off the medication headache and the cluster headaches have been good.

    Not expecting that to last long but I am getting a 4 hour break that I have not had for a long time.

    Wondering if the Imitrex that I took the night before (2 doses)  I had anything to do with it. I started the prednisone the next day ?

  8. 13 minutes ago, spiny said:

    Wow!! A headache from the Prednisone? That shocks and sucks too!! Are you taking several pills per day, or one 50mg pill?


    Took 1 tablet 50mg headache started about an hour after and lasted 22 hours with cluster attacks on top of the medication headache. 

    That was the day one of the seven day prednisone treatment but I am afraid to take the day 2 tablet.

    Maybe wait a day or two before starting. Would rather just have the cluster headache than both. Maybe need a day or two to cleans my system.

    Thanks Dave

  9. 3 hours ago, SECAuthentics said:

    Thanks Batch. I have been on those new D3-50 for about 3 weeks now. Yesterday was my 3rd day in a row without a headache....which has not happened since this new cycle began so hopefully I am turning the 

    Thanks SECauthentics - that is the link and image I took to the pharmacy and was following.

    D3 - 50,000 to be taken daily for one week to ramp up. Then back down to either 50,000 per week or 10,000 per day.


  10. 6 hours ago, spiny said:

    The Pred is used to bridge - it stops the hits while the Verap builds up in your system. I am confused. If you have not been taking it, how would you 'ramp it up'? 

    Yes, you should be taking it while on the Pred. The Pred buys you some Pain Free time while the Verap. builds up in your system to a therapeutic level. The idea is to take the Verap while taking the Pred and when you stop the Pred, the Verap has you CH under control. Does that make sense? You can't stay on Pred due to the joint damage it causes. So, you are not taking Verap now, but do you have a script for it? 

    As for the D3. 50,000 is a 'loading' dose, to be taken once, not daily. Your daily dose will be less. That loading dose builds the D up faster when you are deficient. The daily dose will be around 10k, not 50k. Doing the loading dose while on the Pred and beginning the D3 also can improve your chances of getting PF in a shorter time. So yes, do together, not one after the other. 

    Thanks Spiny - I think the confusion came with my terminology. I used the term ramping up and I meant that for ramping up on the D3 regime and the 50,000 IU daily for one week. Then back down to 10,000 IU daily.

    In the same post I was asking about verapamil since I have never tried it and thought since I will be on pred for a week might be a good time to try it.

    Yesterday and all night was bad. Started the prednisone at noon with 50mg. Had a headache for 22 hours. Prednisone headache with cluster headache and TGN pain poking through hourly. O2 took care of the cluster/TGN but the prednisone medication headache was continuous for 22 hours. Not sure whether or not to continue with the prednisone? 

    Thanks Dave

  11. 2 hours ago, spiny said:

    Hi Spiny - somewhere there was a mix up. I am not on Verap and have never been. I was just asking if it might be a good idea to ramp up on it while starting another 7 day round of prednisone? 

    Or just stick with ramping up on the D3 during the 7 day prednisone?

    Feeling over medicated now :(

    Thanks  Dave


  12. 50 minutes ago, FunTimes said:

    Verapamil can help some. I was at one point taking a little over 900 mg a day with the slow release. I made the change over to the rapid release and worked my way down to 120 twice a day. You will want to have a doc keep an eye on your heart when changing dose and work up slowly. It will take about a week to get into your system so most will do a pred taper for the first week. When I was on the higher dose it effected the feeling in my feet along with a little swelling. If you are also using the D3 with all co factors you will want to space them apart a few hours, Verap is a calcium channel blocker so they would be fighting each other. They both work fine along with the triptans also. 

    Thanks FunTimes - wondering now if just ramping up on the D3 regime might be enough while on the one week pred ?


  13. 12 hours ago, kat_92 said:

    @Cluster Dave Hmm that’s odd. Maybe the MM gave you a month and a half reprieve. Any luck with mm this time around? I believe I am chronic and the mm are keeping the hits or shadows very manageable for me which is good news!! 

    No this time around for what I am calling the killer cycle the mm's did nothing, managed to get a couple 2.5g doses in and no difference. Hits coming every half hour all night like re-bound or slap back headaches that never end.

    Never had that before continuously.

    Thanks Dave 

  14. Thanks Spiny - last night tried Imitrex nasal spray. Each one (Max 2 ) only bought me maybe 2 hours of relief then back to hits and O2 every half hour.

    Last option picked up a weeks worth of Prednisone 50mg tablets.

    Verapamil- I have never taken but have heard lots about it on hear, maybe I should be ramping up on that while I am doing the one week Prednisone, your thoughts ?

    Started D3 regime yesterday got as close to what Batch has suggested only missing the K2.

    Thanks Dave

  15. 4 hours ago, kat_92 said:

    @Cluster Dave damn I’m sorry to hear that. Anything that could have possibly made them so tough for you this time around? The d3 does make a difference. But you need to be consistent with it. Any progress is good progress 


    Thanks Kat - still have not been able to pin down why this cycle is so different than the others. 

    I had my usual cycle in February which I used mm's to deal with. Mm's did the job, didn't abort the cycle, never does for me but made the attacks less frequent and less painful and manageable. Cycle lasted usual month and a half.

    The unusual part was to get hit again with another cycle about a month and a half later. Didn't expect another one for at least 8 months. And this one is the killer cycle. No idea why this one showed up or what triggered it or why its the worst one yet, but the mm's seemed to be no match for this one.

    Thanks Dave

  16. 4 hours ago, devonrex said:

    If you are Canadian, you are likely deficient, most times it is hard to get a D bloodtest here, but can disguise the request in a kidney function test iirc, that's what had to happen for me. As to ergotamine, I myself had a DHE infusion regimen, couple days in hospital for iv then home injections for a couple of weeks (Di-hydro-ergotamine) for me, it did affect them, but more 'scrambled' them a bit, affected duration, timing and to some degree intensity, one of the major side effects I had with it was a feeling/sense of euphoria or happiness/optimism, some injection site pain and irritation. I hope the regimen works for you, sadly I am one of those it showed nothing for me save some body aches got a bit better. 

    If you are anywhere near or able to get to Calgary, in the south health campus there is a dedicated department for headache disorders, staffed by several neurologists specializing in headache disorders.

    Thanks DevonRex

    Spoke to a physician this morning, he said I can go to a lab and pay myself to have the blood work done for Serum level. 

    I live in BC actually on Vancouver Island so Calgary is a ways away from me.

    Going to try ramping up on the D3 with O2 support and Imatrex when hits are out of control also have steroids as a final resort instead of ER.

    Appreciate your information, starting month 4 on this cycle which is a record for me so hopefully this will end soon or at least calm down enough where I can get 5 days med free and try mm's again.

    Thanks Dave 

  17. 6 hours ago, spiny said:

    It is an old medication. And has fallen out of common use due to the potential side effects. In addition, I don' think that it can be taken with any Triptans. Most doctors do not prescribe it as other medications with a 'safer profile' have taken its' place. It also conflicts with other medications.

    The D3 will take about a week and up to about three weeks to see the improvement. A few get immediate relief when they begin taking the vitamins. It is healthy and good for you. Its' biggest claim to fame is eliminating Ch completely for some and lowering the intensity of the hits and slowing the ramp up for others. Keeping them at a lower level of pain is a benefit always! And slowing the ramp up allows you more time to get started on your O2. I suggest getting the lower dosage pills and taking 10k to 15k a day till the 50 arrives. That way you can get started on the entire regimen ASAP. The benefits are surprising for many. Also, 5k and 10k D3 pills are usually all over the net to purchase. If you can't get the specific one recommended by Batch, I'm sure he would tell you to take another D3 to get it in your system. The one he recommends is the 'best' in his book. If you cannot get it, then take a different one. Just take it and the co-factors!!! 

    If your doctor will do it, get a D3 blood test to see what your levels are currently. He might just prescribe the big one for you! In the US, we can order the blood test ourselves. Not sure about Canadian policy is regarding that bit. But, it would be good for him to know that you are deficient. 

    Thanks Spiny - I read further on that med and found the same that it was an old medication. I guess I was just hopeful because I didn't recognize the name.

    I will pick up some D3 from a different pharmacy today. And look for the other vitamins to go with it.

    Off the scale pain last night, on O2 every half hour. Options at that point were ER or steroids. Considering what the ER would do for me after hours of waiting they would probably give me steroids so I took a 50 mg prednisone and that helped get me through the night with O2.

    O2 every couple hours so better.

    Called physician today he suggested another round of prednisone which I don't want. Told him rather try Imitrex than that, he agreed if it helps. Steroids to be last option.

    He also said follow up with Neurologist and think about Botox which the Neurologist is pushing.

    I told him there is no medical proof Botox will help with clusters, your thoughts ?

    Thanks Dave

  18. Thanks Kat - Amazon canada doesn't seem to have it, but I could probably get it off of Amazon.com but be pretty pricey that way.

    I'm in the worst cycle I have had in about 30 years, I don't think D3 will be quick enough to help me.



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  19. Hi Spiny was just reading about ergotamine tartrate

    This medication is used to treat or prevent a certain type of headache (vascular headaches such as migraine headaches and cluster headaches). Ergotamine helps narrow widened blood vessels in the head, which reduces the throbbing effects of vascular headaches.

    Have you heard of this med ?


  20. Thanks Spiny - Several being 50 since all I could find was 1000 IU on the shelf.

    Not a quick solution for tonight.

    Almotriptan did by me a few days of relief but last night like you said they didn't work and possibility caused rebound headaches, hard to tell since I was at that level of getting hit the same amount anyways. 

    The only help my GP has given was to set me up with a neurologist that his only suggestion was botox with might or might not work.


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