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CLUSTERMAN

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Posts posted by CLUSTERMAN

    Medications and Vitamins to avoid after BUSTING!?

    in General Board

    Posted

    1 minute ago, CHfather said:

    It is generally agreed here that you need to be off triptans and other blocking medications for five days before a bust.  I say that is "generally agreed here" because some dissenting views have been expressed lately, saying that while triptans might block busting, there is no need to be off them for five days.  I don't think anyone can say what is "true" about that, so many of us still recommend the five-day "detox."  It is said here that you could use a triptan right after busting and it won't "unbust" you, but you'd have to wait five full days after taking it.  As with Denny, it's my understanding that the D3 regimen and busting are compatible.  You've probably answered this somewhere already, but what meds are you taking (for CH and anything else, since some non-CH meds are also believed to block busting)?

    Thank you @CHfather the only medication I was taking prior to busting was Verapamil and the D3 Regimen. I had discontinued other medications for at least 5 days as recommended.   I have Attention Deficit Disorder however and wonder how long I need to continue to wait until returning to my daily use medication for it.    

     

    ClusterMan

    Medications and Vitamins to avoid after BUSTING!?

    in General Board

    Posted

    First of all, thank you for all the amazing support I have found on this site over the years.  Seriously life-saving.  Just wanted some clarification on after BUSTING do you avoid all medications and vitamins for a period of time?  Or do you go back to the D3 regimen the next day while still avoiding certain meds that could trigger or mess up the CLUSTER BUSTER Session?  Want to make sure I am on the same page.  

     

    ClusterMan

    FIrst Time Posting, looking for advice.

    in General Board

    Posted

    6 hours ago, FunTimes said:

    I have found that it was much cheaper for me to pay for my oxygen out of pocket then using insurance. call the oxygen supplyer and convince them it will be better for both you and them if they give you a few tanks. I have 3 M tanks and about 12 E tanks that I can rotate out to get filled and I manage it so I never run low enough to run out over a weekend. I am lucky with my place as they will deliver the next day as long as I call it in by 5pm the day before. I did have issues with them when I first started using them but after calling and talking with just about everyone I could and meeting and dealing with the driver things go much better now.

    I ordered the cluster mask from the link above and that is 100 x's better for me and I went on amazon and ordered my own regulators for both the M and E tanks. I keep extra everything just in case i break a mask or crack a hose. I keep tanks in my house, garage, car and work. It is kind of a pain in the neck lugging this stuff all over but it is better then a pain the the side of your head..

    Good luck and let us know how you do.

    Thank you!!  I will see how much the O2 will cost through insurance and keep you posted on my progress.  So far I am still waiting to hear if insurance is going to approve it.

    • Like 1

    FIrst Time Posting, looking for advice.

    in General Board

    Posted

    1 hour ago, CHfather said:

    Most O2 suppliers don't know anything about CH, so they are likely to give you the wrong stuff.  If you get a prescription and decide to go forward, call the supplier before they deliver anything.  Be sure that they understand that you need at least one large tank (an M tank or an H tank), at least one smaller tank (an E tank) for portability, a regulator that goes up to at least 15 lpm (the prescription will state a flow rate, probably 15, but if you can get the doc to write it for 25, that would be great), and a NON-REBREATHER mask.  Let us know how that goes.  The mask will work but you could also order a mask specially designed for people with CH, which many people find to be a very big improvement:  http://www.clusterheadaches.com/ccp8/ 

    There have been two people here who underwent a lot of hormone replacement therapy because they were transitioning.  As I'm remembering, one felt certain that that therapy made the CH worse, and one found the opposite to be true.  That's what I think I remember.  You could try putting "hormone replacement" into the search bar ) top right of the page) and see what comes up.

    Thank you! Hats great O2 Info.

     Yes I have a feeling the HCG has something to do with it.  I was taking it to increase my sperm count for helping to get my wife pregant and up my free testosterone levels.  The doctor started me on clomephine 1 pill a week and I took that for several months without issue then he decided to switch me to HCG.  Nearly as soon as I started the HCG I think is when I may have started to get shadows.  Then the headaches progressed.  I tried 3 subsequent times to bust the cycle all about 5 or more days apart and they felt like they were going to bust the cycle but as soon as I took the HCG again they ramped up.  So I do think there is a correlation at this point.

    FIrst Time Posting, looking for advice.

    in General Board

    Posted

    3 minutes ago, CHfather said:

     

    Cylinders (not a "concentrator," which makes O2 from room air).  A regulator that ideally goes up to 25 liters per minute (lpm), (but a supplier will probably only give you a 15 lpm regulator), and a NON-REBREATHER mask.  You need a prescription from your doctor.  That prescription is provided to an oxygen supply company.  They bring you your stuff.  There is a lot more to be said about all this, so come back when you get the prescription -- before you get the delivery.  I'm being optimistic.  Even though O2 is the #1 abortive in all the medical reference books/sites, and it works very well and has no side effects, doctors often don't or won't prescribe it, and some people have big issues with insurance coverage.  If any of those things occur (no prescription, no coverage), there are still options.  So come back then, too.

    Thank you @CHfather my neurologist said she was willing to prescribe O2 and I spoke with insurance today they said they would cover 80% after my deductible has been met for durable medical equipment.  So fingers crossed it will work out.  I have started the D3 Regimen and verapamil for now.  I have stopped taking most all other medications I am prescribed and hormone therapy medication I was on previously in hopes this helps as well.  So far this has helped the clusters from getting more painful however the cycle is still going and they are still frequent.

    FIrst Time Posting, looking for advice.

    in General Board

    Posted

    Thank you @Batch I really appreciate you taking the time to help.  I know that I am vitamin D deficient for sure.  I am currently taking a look at the protocol.  My only concern is I am also susceptible to ongoing kidney stones so taking large levels of D3 could solve one problem and create another.  I am doing some research on this one to make sure I don't start creating stones.  Do you know if taking my Attention Deficit Disorder medication such as Adderall can interfere with the D3 protocol or cluster headaches in general?

    ClusterMan

    Clomephine Citrate to break a cycle?

    in General Board

    Posted

    Please let me know your findings.  I think there must be some merit to it as I was being prescribed HCG recently for hormone replacement therapy and I believe it actually triggered the attacks somehow effecting my Hypothalamus negatively.  So maybe the clomephine has a way of properly regulating something with the hypothalamus/hormones.  I called the doctor and he said to stop taking the HCG immediately and switch to clomephine citrate in place of the HCG.  So naturally being in a cluster cycle now I was scared and started googling Clomephine and cluster headaches and found the link above saying it could actually help.

    FIrst Time Posting, looking for advice.

    in General Board

    Posted

    Hello, fellow Cluster Heads,

     

       I have had cluster headaches for 15 years now.   They started in my mid-twenties. I don't drink, I don't smoke, I don't use recreational drugs and drink minimal caffeine as it can trigger me. I have been able to bust them over the years with some of the PSI techniques I have learned here.  However this cycle I have been unable to bust them after 3 subsequent tries.  I broke down and went to a neurologist today who prescribed me verapamil, sumatriptan nasal spray and she was open to prescribing me several other medications if I didn't want to take the Sumatriptan due to me being very wary of it and it making my headaches worse when taken orally many years ago.  I believe the other options she said were nasal lidocaine, lithium, ergotamine and possibly Aimovig - CGRP inhibitor.  Is there one, in particular, that will help me break my cycle and get this under control?  My usual methods of busting the cycle have not worked.  Also, I should note that two things were different this time when I was trying to bust the cycle.  I continued to take my ADD medication, Adderall after attempting to bust the cycle as well as HCG and Arimidex as I am on male hormone replacement therapy currently.  Those three medications were the only things different that continued to take that I can think of when trying to bust this cycle beside some other supplements my general practitioner has instructed me to take for hormonal balance.  Any advice would be greatly appreciated.  

     

    CusterMan

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