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LKD06

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I was wondering if anyone has every gone through a cycle without medications? Did it make your cycle longer or shorter, or not make a difference at all? I am currently in a cycle right now and am doing my best to not get any meds. Prednisone no longer does anything for me and imitrex has the rebound headaches so I dont want to waste my time with those, so I am basically only using capsasin cream around my eye and jaw, allergy pills and this nasal spray specifically for cluster ha. I'm on week 4 and normally my cycles last 6 weeks, but I dont know if I am doing a bad thing by not taking the meds?

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1 minute ago, FunTimes said:

I would highly recommend getting oxygen to abort your attacks. No rebounds or side effects 

Im on medicaid and the government refuses to give oxygen to cluster headache sufferers. The best I can do is get these little oxygen tanks from the grocery store but they are fairly expensive.. I honestly have just been suffering through my attacks and am just wondering if I might be prolonging my cycle. Ive had CH's for 17 years now and the last time I didn't take medication was before I was diagnosed, like 15 years ago so I cant remember how that went.

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I cut my 100 milligram sumatriptan pills in half. I don't have rebound headaches, but I wait until it is a full blown attack before I take the pill. I don't think I could take not having any meds. I'm chronic with 3 attacks a day. Oxygen helps a lot.

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1 minute ago, 81007 said:

I cut my 100 milligram sumatriptan pills in half. I don't have rebound headaches, but I wait until it is a full blown attack before I take the pill. I don't think I could take not having any meds. I'm chronic with 3 attacks a day. Oxygen helps a lot.

Oh trust me I am dying but I just don't seem to have many options anymore as I think my body is used to the meds or something. Ive taken promethazine which seems to help the most out of everything lol and I cant get oxygen. I'm sorry your chronic, prayers to you man. I can't even imagine the half of what you go through. The only thing that makes me madder than anything in this world is to know that someone is suffering with what I go through, exceot they have it worse than me

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Hi 81007 and LKD06. And welcome to you both.

I am at a loss why pills are being prescribed for clusters? They take too long to work for most people. If you get the injections you get much faster relief and you can take less than the standard auto-injector dose by monkeying with the stupid pen. Vials are much better.

I don't think you are making a mistake in avoiding the meds if you can LKD06. There are other options that can help you. The D3 Regimen, energy drinks, etc. Sorry, I am not up to speed on your history. 

This community is working to solve the issue of no O2 for Medicaid or Medicare. There is a meeting in DC to bug the government to fix this horrible injustice. We call it Headache on the Hill. 

ATB

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3 minutes ago, spiny said:

Hi 81007 and LKD06. And welcome to you both.

I am at a loss why pills are being prescribed for clusters? They take too long to work for most people. If you get the injections you get much faster relief and you can take less than the standard auto-injector dose by monkeying with the stupid pen. Vials are much better.

I don't think you are making a mistake in avoiding the meds if you can LKD06. There are other options that can help you. The D3 Regimen, energy drinks, etc. Sorry, I am not up to speed on your history. 

This community is working to solve the issue of no O2 for Medicaid or Medicare. There is a meeting in DC to bug the government to fix this horrible injustice. We call it Headache on the Hill. 

ATB

What type of injection is it, imitrex? Ive never even been offered it. Ive only had one doctor in my past even prescribe me oxygen, which was the doctor who diagnosed me and gave me all the medication I currently know to take, because most doctors have no idea what cluster headaches even are. So I havent been given any other ideas to help. Also I am taking D3 and magnesium way more than normal, as well as, a little cbd at night. If I take too much cbd; however, it can trigger an attack, so I have to be super careful with that. But just enough will make me get a great night sleep as well as no attacks the next day. I'm assuming it is because the cbd makes me very relaxed. Being relaxed is a trigger for me.

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Yes. Trex comes in pills, nasal spray, and shots. You administer the shots yourself. Any headache doctor would know that. Not every Neuro unfortunately. Pills are normally for Migraines, not Clusters. I would need to do some research on some of the other meds. They are not common as a first line of treatment. O2 needs to be first. If you have to buy and set up a welding tank yourself. Verapamil is the first line pill. Short acting is the best for Cher's , not the extended relief. If the script says 'twice a day', that is extended relief. Prednisone is given as a short course of treatment till the Verap builds up in your system.

I would look into the D3 Regimen. It is just a few vitamins to take daily. Many have gone pain free on that alone. Most of the rest using it have had a reduction in Kip Level Pain and a slower ramp up. That gives you more time to get your caffeine and get to the O2 before you want to beat your head against a wall.

You need to see a Neurologist, hopefully one who specializes in headaches. The Neuro needs to order a MRI of your brain to rule out other problems if there are any. 

Have you read the Blue 'New Users - Read Here First' at the top of this page?

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28 minutes ago, spiny said:

Yes. Trex comes in pills, nasal spray, and shots. You administer the shots yourself. Any headache doctor would know that. Not every Neuro unfortunately. Pills are normally for Migraines, not Clusters. I would need to do some research on some of the other meds. They are not common as a first line of treatment. O2 needs to be first. If you have to buy and set up a welding tank yourself. Verapamil is the first line pill. Short acting is the best for Cher's , not the extended relief. If the script says 'twice a day', that is extended relief. Prednisone is given as a short course of treatment till the Verap builds up in your system.

I would look into the D3 Regimen. It is just a few vitamins to take daily. Many have gone pain free on that alone. Most of the rest using it have had a reduction in Kip Level Pain and a slower ramp up. That gives you more time to get your caffeine and get to the O2 before you want to beat your head against a wall.

You need to see a Neurologist, hopefully one who specializes in headaches. The Neuro needs to order a MRI of your brain to rule out other problems if there are any. 

Have you read the Blue 'New Users - Read Here First' at the top of this page?

Ive had an MRI but it wasn't during a cycle so the neurologist just assumed that what I was given was good enough. Maybe I should go to a headache specialist instead. But anyways, I know what meds I could be taking, such as oxygen and stuff. My question is whether anyone has gone a cycle without taking any meds such as prednisone or imitrex? And what their experience was

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The scan does not need to be done when you are in cycle. It is looking for other brain abnormalities. One and done unless something else happens.

Yes. I have. Several times in the 'old days'. My hits were milder and shorter then. And then once with a 6 month cycle where I thought I was going to die. I didn't die, the cycle ended, and I found a Neuro. He helped as much as he was able to with the limited knowledge he acquired in school and practice. Then I found this site and became a person again. 

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I'm not sure I'm following the significance of this question, and I'm not sure I completely understand the posts because they seem odd to me.  To answer the fundamental question, my daughter has been through many years of cycles with no medications at all.  She has never used verapamil or steroids, and she has maybe used triptans five times in the fifteen years. For a long time, she didn't have oxygen.  A lot of people believe that such-and-such medication, usually Imitrex (an injectable triptan), makes cycles worse. My daughter's cycles got worse over time, just like it happens for almost everyone, even when she was using nothing. I am not a believer that meds/no meds makes any substantial difference, unless they are overused.  She's doing okay now with the full D3 regimen and high-flow oxygen supplemented by caffeine.  (The story of why she didn't have O2 for many years is a typical story of idiot doctors not giving a crap and the patient not knowing any better.)

To endure CH without oxygen seems crazy to me.  If you can't get a prescription, you can do what many many people with CH do -- set up a system using welding oxygen.   To not do the full D3 regimen (not just "D3 and magnesium way more than normal") also makes no sense to me.  What I know about treating CH pharmaceutically and otherwise, including links to the full D3 regimen and info about welding O2, is here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  

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38 minutes ago, CHfather said:

I'm not sure I'm following the significance of this question, and I'm not sure I completely understand the posts because they seem odd to me.  To answer the fundamental question, my daughter has been through many years of cycles with no medications at all.  She has never used verapamil or steroids, and she has maybe used triptans five times in the fifteen years. For a long time, she didn't have oxygen.  A lot of people believe that such-and-such medication, usually Imitrex (an injectable triptan), makes cycles worse. My daughter's cycles got worse over time, just like it happens for almost everyone, even when she was using nothing. I am not a believer that meds/no meds makes any substantial difference, unless they are overused.  She's doing okay now with the full D3 regimen and high-flow oxygen supplemented by caffeine.  (The story of why she didn't have O2 for many years is a typical story of idiot doctors not giving a crap and the patient not knowing any better.)

To endure CH without oxygen seems crazy to me.  If you can't get a prescription, you can do what many many people with CH do -- set up a system using welding oxygen.   To not do the full D3 regimen (not just "D3 and magnesium way more than normal") also makes no sense to me.  What I know about treating CH pharmaceutically and otherwise, including links to the full D3 regimen and info about welding O2, is here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  

tIthe significance of this question is that I do not want to prolong a cycle because I am not taking medication. It has been a long time since I have not taken meds and I dont remember how long my cycle lasted. I do get oxygen, they are small oxygen tanks that I buy at the pharmacy, but they are costly and I have to pay out of pocket. Ill look into welding oxygen and look up the d3 regimen

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For a very long time I was in denial & on no meds. I was chronic. Couldn't take Verapamil, prednisone & couldn't afford oxygen. Then got Sumatriptan (Imitrex) injections & found these fine folks. I was able to get oxygen & the treatment methods here got me to painfree. I only take occasional preventive doses to stay pain free now.

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12 hours ago, LKD06 said:

tIthe significance of this question is that I do not want to prolong a cycle because I am not taking medication

Ah. Thank you. Regarding pharmaceutical meds, you might have a longer cycle if you're not taking a preventive, which typically would be verapamil.  But it usually takes verapamil at least a couple of weeks to take effect.  Steroids seem to stop cycles for some people, but for most (I would say) they just provide temporary relief (often buying some time for the verap to take effect).  I don't think that you are prolonging your cycle by not using pharma abortives.  Regarding non-pharma things, you almost definitely will have a shorter cycle if you have been using the full D3 regimen, though starting it during a cycle might not make a major difference for that particular cycle.  Busting of course would probably shorten your cycle.

12 hours ago, LKD06 said:

It has been a long time since I have not taken meds and I dont remember how long my cycle lasted.

I'm not sure the length of a cycle some years ago would tell you much as a comparison, since cycles morph so much over time.

12 hours ago, LKD06 said:

they are small oxygen tanks that I buy at the pharmacy

This is puzzling to me.  Do you mean actual cylinders with oxygen in them, which you use with a regulator and a mask, or are you talking about those cans with a couple of liters of oxygen in them that you just spray directly into your mouth?  Or something else?  I'm just curious about this.  

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4 minutes ago, CHfather said:
12 hours ago, LKD06 said:

 

This is puzzling to me.  Do you mean actual cylinders with oxygen in them, which you use with a regulator and a mask, or are you talking about those cans with a couple of liters of oxygen in them that you just spray directly into your mouth?  Or something else?  I'm just curious about this.  

They are these little mini oxygen things that are made for hikers. They are semi effective, but after reading what everyone wrote about the welding o2 or going to a medical supply, I am going to go that route. I didnt know about these things because anytime I have asked for o2 from a doctor they have not allowed me to get it. So I thought those mini oxygen tanks were my only option.

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If you can afford it, you should definitely try to get oxygen.  I recommend either welding oxygen or aviator oxygen.  The benefit of aviator is that it is "breathing grade" and does not require a prescription.  I only add this because I have gotten some flack from my welding supply store for the amount of O2 I use.  They know I am not doing that much cutting and they question me.  I made this worse by trying to fill my medical tanks as well (because I had a prescription but O2 is not covered by my  insurance), and they will refuse to sell to me if they know I am breathing it. So I get aviator oxygen and they don't complain.  It is the same price as welding O2 and probably a quarter the cost of medical oxygen if you pay out of pocket.  Keep in mind that welding oxygen is just as good as "breathing grade" oxygen, and these companies only refuse the sale due to liability concerns.

Clovis also makes a good point.  Many doctors (mine included) will not prescribe oxygen when they know insurance won't cover it.  Don't let them do that.  Paying for it is your responsibility and never let a doctor shut down an avenue of treatment for this condition because insurance won't cover it. (Especially when it is the most effective treatment available.)

Regarding the medications: I am chronic and all of the stuff I was prescribed for a long time had no helpful effects.  In that regard I would say I had "no medication."  I did, however, have imitrex tablets, which could still be considered "no medication" as they absolutely suck for clusters.

The advice I was given from a fellow clusterhead regarding prednisone was that if it stops working you need a higher dose.  For example, if it stopped working at 30mg, then you would go back up to 50mg and taper back down.  Of course, prednisone is only a transitional therapy until some other medication can take effect.  I have been warned by many clusterheads not to take a lot of prednisone because of the cumulative side effects.   But for a while, until it stopped working, prednisone was a blessing.  Now I know them as "the devil's tic-tacs."

@81007 For me, oxygen works almost as fast as an imitrex injection, which is way faster than the pills. But waiting until a full blown attack to take a slow acting drug seems like prolonging the agony to me. If you get shadows before your full blown attack, my recommendation would be to take the pill at the onset and not wait, but injections are better.  I only use imitrex as a last resort (aka when oxygen is not available).

 

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7 minutes ago, Brain on fire said:

@LKD06 Curious, What nasal spray specifically for CH are you taking?

Its called sinus plumber. Its not a prescription. Its just helps with the runny nose and teary eyes I get, plus kind of dulls the pain.

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1 hour ago, CHChris said:

If you can afford it, you should definitely try to get oxygen.  I recommend either welding oxygen or aviator oxygen.  The benefit of aviator is that it is "breathing grade" and does not require a prescription.  I only add this because I have gotten some flack from my welding supply store for the amount of O2 I use.  They know I am not doing that much cutting and they question me.  I made this worse by trying to fill my medical tanks as well (because I had a prescription but O2 is not covered by my  insurance), and they will refuse to sell to me if they know I am breathing it. So I get aviator oxygen and they don't complain.  It is the same price as welding O2 and probably a quarter the cost of medical oxygen if you pay out of pocket.  Keep in mind that welding oxygen is just as good as "breathing grade" oxygen, and these companies only refuse the sale due to liability concerns.

Clovis also makes a good point.  Many doctors (mine included) will not prescribe oxygen when they know insurance won't cover it.  Don't let them do that.  Paying for it is your responsibility and never let a doctor shut down an avenue of treatment for this condition because insurance won't cover it. (Especially when it is the most effective treatment available.)

Regarding the medications: I am chronic and all of the stuff I was prescribed for a long time had no helpful effects.  In that regard I would say I had "no medication."  I did, however, have imitrex tablets, which could still be considered "no medication" as they absolutely suck for clusters.

The advice I was given from a fellow clusterhead regarding prednisone was that if it stops working you need a higher dose.  For example, if it stopped working at 30mg, then you would go back up to 50mg and taper back down.  Of course, prednisone is only a transitional therapy until some other medication can take effect.  I have been warned by many clusterheads not to take a lot of prednisone because of the cumulative side effects.   But for a while, until it stopped working, prednisone was a blessing.  Now I know them as "the devil's tic-tacs."

@81007 For me, oxygen works almost as fast as an imitrex injection, which is way faster than the pills. But waiting until a full blown attack to take a slow acting drug seems like prolonging the agony to me. If you get shadows before your full blown attack, my recommendation would be to take the pill at the onset and not wait, but injections are better.  I only use imitrex as a last resort (aka when oxygen is not available).

 

Where exactly do I get aviator oxygen? 

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Aviator or aviation oxygen is usually sold at a gas supply store.  In my experience, these are the larger gas supply stores that sell many types of gases.  My local welding supply store does sell welding and medical oxygen, but not aviator.  It is important to note here that ALL of those types of oxygen (medical, aviator, welding) are all usually coming out of the same large tank out back.  The procedural requirements for filling these different types are the only real difference. Welding oxygen is easier to get because more places have it. My GP doctor told me that the welding oxygen would be just fine as long as the tank was clean and had not been used for welding/cutting (as in the tank had been attached to a rig that could have allowed back flow with other welding gas).  I have been told that the purity of welding oxygen has to be as high as medical oxygen to work properly for its intended purpose. 

You should google gas supply stores in your local area and call to ask if they sell aviation oxygen (or check their website).  I would not recommend trying to get it at an airport though, as they mark up the prices steeply.

I have been getting aviation oxygen only because the guys at the gas store were getting to know me too well and have been questioning how a man who is very obviously not a welder is using so much welding oxygen.  They think it has to do with the fact that it cost as much for one E tank of medical oxygen as it did for an M-sized tank of welding oxygen (they are right).  They are concerned about their liability if I were to sue them for getting injured breathing their welding gas.

 

 

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18 hours ago, CHfather said:

clovis',

You are now getting four aborts from each of those small tanks?

The length and pain are diminishing, so when i feel something i hit it for 15 minutes and good to go. Im praying the cycle is coming to an end. 4 may be misleading if theres is just starting a cycle.

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