New member, please help!!

[newfie]

Hello everyone! I just discovered this fantastic new world and all the great information in it. I have been a CH sufferer for 16 years, they cycle every 3-4 years and lasted about a week....... that was until 2 weeks ago when they returned with a vengeance!  It started out as the other cycles did, one headache a day that I could almost set my watch to, it lasted about 45 mins to an hour and then went on its way. That only lasted for three days and then everything changed drastically, now I'm getting 2-3 attacks a day that are totally unpredictable and they are lasting 45 mins to an hour and a half, sometimes followed by shadow headaches that just wont go away. I went to my doctor and he prescribed Sumatriptan 50mg and indomethacin 50 mg at attack time (max 2 pills in 24hr period for both) and 1 60mg  propranolol in the morning, (I have perfect blood pressure but he wants to lower it) at night I am to take 1 amitriptyline before bed. I started these meds 4 days ago, they have never lasted this long before or have been so unpredictable. I am 43, not overweight and healthy, never smoked but consider myself a heavy drinker, 26 oz bottle of rum a week. I have not had any alcohol since this started though..  I guess im just looking for some advice on why this went so wrong this cycle and any idea how long this will last.  My doctor told me to drop caffeine from my diet but I seen here that energy drinks are sometimes recommended?  And sorry for my ignorance but what exactly is busting?  Thanks for taking the time to read this and I hope someone can help me.

[CHfather]

newfie,

Like most doctors, yours seems to have no idea what he's doing when it comes to CH. I am not a doctor, so I'm just speaking from observation and general knowledge here.  Others will correct me where I am wrong.   

The most effective prescription abortives are oxygen (see the Oxygen Page under the black-and-white MENU tab on the left side of this page for more information) and injected sumatriptan (imitrex). Sumatriptan pills take too long to work.  Oxygen is by far the best because it has no side effects (you can set up an oxygen system without a prescription, as you'll read in that file I referred you to).  Indomethacin might help, but probably won't -- and it's really hard on your stomach. 

Almost everyone with CH has at one time or another used caffeine to abort, or try to abort, a cluster attack.  For many people, energy drinks work best.  If you have CH, there's no reason for you to stop caffeine because of it, and stopping won't help end your cycle. 

Propranolol is mostly effective for migraines.  The blood-pressure drug that works best to help prevent CH attacks is verapamil.  The amitriptyline (Elavil) helps some people, but it's not a first-line treatment.  So you're taking a whole mess of pharma stuff that might help, while not taking the pharma stuff that's most likely to help.

Then there's busting, which is ingesting hallucinogenic substances (in some cases, at non-hallucinogenic levels) to stop CH cycles and possibly prevent future ones.  Many people here would tell you that if psychedelics were legal, they would be the first thing medicine would prescribe -- highly effective, no substantive or long-term side effects.  Read about busting starting here -- https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 -- and then in other numbered files in the "ClusterBuster Files" section of this board.  Particularly, read the file about Warnings, and the file about "Playing Well with Others."

No one has any idea why CH does what it does. Virtually everyone here has a story that is in some way similar to yours, about cycles morphing.  Many people will tell you that the pharma drugs seemed to make cycles worse for them.

But let's hope that this cycle is still relatively short, and is running its course now.  If it was me, I would try an energy drink or energy shot at the first sign of an attack -- something high in caffeine and high in taurine -- or at least a very strong cup of coffee.  I would see whether you can get an oxygen prescription quickly.  I don't know what I would take of what your doctor has prescribed; I guess you can see what works for you.  I might try to get him to give you injectable Imitrex and verapamil.  (Prednisone often helps, taken on a tapered basis.)

I guess some people here would tell you that you should try busting right now, because you don't know how long your cycle will last.  But time goes by for most people as they obtain busting supplies and, again, I'm hoping that your cycle will end soon.  You have to be off of some meds, including sumatriptan, for about five days before you can bust.

Healthy nonsmoking vegetarians get CH, and unhealthy meat-eating heavy smokers get CH.  Non-drinkers get CH and alcoholics get CH. Your lifestyle probably has very little to do with your having CH or with the nature of your cycles.

There are other long-term, non-pharmaceutical, preventive strategies you can try, such as the vitamin D3 protocol and preventive busting).  Will tell you more about that in a subsequent message.

   

[newfie]

Thank you for the reply CHfather, i figured as much in regards to my doctor and the meds he has me on. I was in emerg earlier this week and they put me on oxygen but im unsure of the flow rate and the mask was terrible, plus my headache had fully blossomed at that point so it did nothing to help. I have a follow up visit with my doc in 2 weeks and i will press for oxygen to have at home..... 2 weeks is a long way away though.

[ThatHurtsMyHead]

newfie,

I'd push your doctor to get a reference to a qualified neurologist.  I'd also question the diagnosis of CH if you have 1 week of attacks ever 3 to 4 years.  That sounds very odd and nothing like an eposodic CH I've ever read about (but I'm easily wrong sometimes .  A neurologist that specializes in head conditions would be a highly recommended next stop. CHFather has some great recommendations above

J

[CHfather]

You can't call your doc's office and ask about O2 and maybe injectable imitrex?  Many people find that a nurse or even an office assistant can be more helpful (more responsive) than the doctor (though of course they can't prescribe for you).  You could fax or attach to an email the major O2 study: http://jama.jamanetwork.com/article.aspx?articleid=185035

Some people say that breathing in cold air from an air conditioner helps with their attacks (this isn't an "oxygen" treatment--it's really the effects of the cold air).  Try the energy drinks/shots; I think they're your best bet among what you have for some potential relief.  As the CB O2 file says, you can set up your own O2 system using welding in oxygen, in just a couple of days (however long it takes to get a non-rebreather mask).  Vigorous exercise at the first sign of an attack helps some people -- really vigorous: running or vigorous calisthenics.

Some people find that the licorice root method works well, quickly.  Be sure to check the contraindications. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

Same is true for the "vitamin D3" regimen: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

And I agree with what THMH says about seeing a headache-specialist neurologist, both for general CH purposes and also because some aspects of your pattern do seem generally un-CHlike (while other aspects, such as the previous clocklike timing, and the amount of pain you're experiencing, do sound like CH).

[MoxieGirl]

Hi, welcome to the group, and sorry you have to be here.

You can't get better advice than what CHFather has already given you. He knows his stuff, and I second everything he's said.

I believe clusters follow one rule: No two people's clusters are the same, and just as soon as you figure yours out, it changes.

I've read many, many posts like yours. People get so used to the clockwork precision of cluster attacks over the years, when they change, they are totally shocked. In my experience, this is normal.

I took Indomethacin to help with my chronic daily headaches, taking it instead of Anadin for several months. I always had to make sure I'd eaten before taking it as it would otherwise make me ill and very light headed. There is a variant of clusters called SUNCT, which responds really well to Indomethacin, but clusters don't. Water off a ducks back sort of thing.

Nothing you take orally will work fast enough to abort a cluster. Well, apart from caffeine. I find energy drinks or coffee can help shorten an attack. (That said, I'm sure someone will post saying they find some oral medication works as a great abortive - I refer to my rule above.)

Like you, I'm a serious rum drinker. Thankfully though, alcohol isn't a trigger for me. But for most people it is an instant trigger. I agree with CHFather, your diet, lifestyle, etc. probably has little to no impact on attacks. That said, if I don't get enough sleep or my stress is too high, or two low, I'll get hit bad.

Try to find a doctor who knows about clusters, or do your own research and tell your doctor what you need.

How long will this cycle last? Not sure anyone can tell you that. Hang in there though.

xx MG

[newfie]

Thank you everyone for the advice. I could just feel a headache coming on so I took an extra strength 5 hour energy shot and one 50mg indomethacin 10 or so mins before that and within 5 mins it has faded a bit.... I can still feel it in the shadows but it has not what I call "blossomed' into a full on attack yet, my fingers are crossed that this helps a bit.  When I first started getting these 16 years ago my family doc had no idea what was happening to me, nor did I.   I turned to the internet and I kind of self diagnosed myself from the Mayo clinic site. I had all the symptoms and it described exactly what I was going through, so I referred my doctor at the time to it and after a week or so and a CT scan she agreed with what I had found.  That was over a decade ago and I have not had a CT scan since, my current doc says he will do another in 2-3 weeks and refer me to a neurologist at that time if things don't improve.  :  I have decided to stop the what I consider heavy drinking as I personally think it is a trigger for me, I never had CH until I started drinking 16 years ago so I think it has something to do with it. What a "buzz" I'm having from that shot I took a few mins ago! I feel all tingly and sensitive...weird!!  Do you think I will regret doing this later by having a huge attack ? 

[CHfather]

If you have CH, indomethacin will not help (in fact, whether indomethacin helps or not is an indicator of whether a person has CH or another type of headache condition, CPH or HC, that can seem like CH; it helps for those conditions but not for CH -- and from your symptoms, you definitely don't seem to have CPH or HC).  So there's not much point taking the indo, or mixing it with the energy shots.  An extra-strength 5-hour energy shot has about twice as much caffeine as a cup of coffee (that's a true "cup" of coffee -- 8 oz), so that might be the source of the tingliness.

There's no reason that taking an energy shot should lead to a bigger attack later.

It's undoubtedly a good idea to cut back on any heavy drinking.  Usually what's referred to here as a "trigger" is something that brings on an attack immediately.  There are many triggers, different ones for different people, but alcohol is the most common one.

I might be wrong, but I think a CT scan is rare related to CH: I think MRI is more common.  Also, CH indicators can't be seen on any brain scan; the scan is used to be sure that something else isn't causing the headaches/attacks.

[newfie]

Thank you! I guess I will stop taking the indomethacin if its not helping me. Whats CPH and HC ?  So do you think I should suggest an MRI or CT scan to rule out anything? I know your not a doctor but do you think the Propranolol and Amitriptyline are a waste as well? My doc said to increase the Amitriptyline by 10mg every 3 days to max of 10 pills (100mg) a day if needed! (prescribed for acute pain I was told) I'm not about to do that!  From what I have been reading they are not something I want to get hooked on, I've got enough problems on my plate now!  What about massage therapy or seeing a chiropractor?

[CHfather]

CPH: chronic paroxysmal hemicrania  HC: hemicrania continua.

I thought you said you were going to have a CT scan.  I was just saying that I thought MRI was more common.  It's good to rule things out -- every once in a very great while, the scan finds something that is more manageable than CH, or requires different management than CH.

There's a search engine at the top left of the page that will allow you to search things (such as propranolol and amitriptyline) and see what others have said about them.  I don't think either of them have shown much success for CH. It's hard for me to tell you not to take the meds you've been given, since that's what you have.  I think both of those things have shown more success for migraines than for CH.  It seems like you've generally been given a bunch of migraine meds (I think indomethacin works okay for migraines at high dosages).  Sometimes with people who are just starting to treat their CH with meds, things work that don't work later, or for very long.

[Bejeeber]

Hi Newfie,

I just wanna say you've been receiving spot on advice here, and I strongly agree with all of it including switching to a qualified headache specialist yesterday, as your doctor has made the same old classic prescription mistakes we see countless uninformed doctors making over and over again.

For instance, no well CH informed doctor would ever prescribe the oral form of imitrex for CH, it has been widely known forever now by CH'ers and headache specialists to be too slow acting.

[newfie]

Here's what happened today, while I was posting at approximately 11:30 am this morning (read above) a headache started, I took 1 50mg indomethicin  and an extra strength 5 hour energy shot, within 30 mins my headache was almost completely gone!   Fast forward to tonight ( I was pain free all day) at 12:20 am I was awakened by a headache starting, I immediately took 1 indomethicin and downed a red bull that I had opened 3 hours earlier this evening so it would go flat and got almost the same results a second time, headache almost gone within a half hour ( I can just faintly feel it lurking) What do you make of this?

[CHfather]

Not exactly sure what you're asking, but it sounds like these attacks are shorter than the ones you've been having lately (you don't say anything about their severity).  Are you just taking the indo and the RedBull, or are you also doing some or all of the others?

So I suppose, why mess with success?  You gotta be somewhat careful with the indo plus the caffeine -- indo itself is pretty hard on the insides (docs often prescribe it along with something that will protect the stomach) -- so if you feel pain, be careful. (This, again, is my non-doctor advice, of course.)

If you had oxygen, you'd probably be aborting those attacks in 10-15 minutes max, and I'd be very confident telling you to drop the indo.  My advice about that is to call your doc tomorrow and insist.

[newfie]

Thanks again for the advice, the severity of the pain is not to bad... more annoying than anything actually but only if I catch it before it gets to bad. My next attack I will try just the redbull or 5 hour energy, if that don't help then I will take the sumatriptan and leave the indo out, you are right on the money with the stomach issues, I spend an hour on the toilet in the evening followed up with 2 immodium. I am still taking the 1 blood pressure med a day followed by the amitriptyline at night. Do you think its ok to stop taking both of them? I've been on them since this past Tuesday.

[CHfather]

You're getting above my pay grade here.  It's almost 100% certain that the sumatriptan will not help you if you take it when an attack is underway--just takes too long to get into your system.  But whether the propanolol and amitriptilyne are part of the difference you're experiencing, I really can't say.

The questions are obvious -- should you drop some meds and risk the good results you're getting in order to maybe not be taking so many meds (especially when the meds are not front-line CH meds), or just stick with what you're doing, since it's helping?  It's easy for me to say that I'd bet the RedBull alone would give you the same results . . . but I can't swear to that -- and energy shots, like practically everything else, sooner or later lose their effectiveness, so if the other things are helping, you'd want to keep using them, and I think they're the kinds of meds you have to build up in your system before they're fully effective.   I suppose you could just try the RedBull and nothing else as an abortive (no indo, no suma), and the "only" cost might be a longer and more severe attack.

Sorry, this is the best I can do . . . just thoughts.  Get oxygen and verapamil (and I suppose Imitrex as a backup) and these questions all go away (for me, at least).

[ThatHurtsMyHead]

newfie,

You seem to be taking a lot of stuff, that might be clouding what's going on.  I think you're on the right path to try JUST the energy drink, /or JUST the indomethacin.  That said, sometimes it takes multiple things to knock the attacks down.  What works best for you - IS best.

My last cycle the VA prescribed amitriptyline (Elavil).  I took a half a pill one night, but after reading all the side effects.  I never took another one.  (Instead, I focused on finding a good day to dose my fungus).

PFW,

J

[Cassidy]

Newfie,

If you have only been taking the RX meds for less than a week, I believe you could dump them with no problem.

I would stick with the energy drink, which I prefer very cold and an ice pack on the painful spot. From there I would check out the o2 and order some RC seeds.

I'm thinking you are concerned about quiting the RXs.

If you had been on them for several months then I'd say detox slowly. But that wouldn't apply to your case. Sounds like the RXs are causing more grief than relief, so why take them. Best of luck       Leslie

[newfie]

Well I got my oxygen yesterday and my doc said the blood pressure meds I'm on are from the same family as verapamil so he said that was fine. Said I could drop the indo. Referred me to a neurologist but I know that will take months here.  :-[. The only headache I had yesterday was a shadow headache that would just not go away and I still have it this morning. Very frustrating  >

[CHfather]

my doc said the blood pressure meds I'm on are from the same family as verapamil so he said that was fine.

  I don't know (have I mentioned that I'm not a doctor?).  Propranolol is a beta blocker; verapamil is a calcium channel blocker.  So I guess it's a matter of what "family" we're talking about. In the Merck Manual for Physicians, it says about propranolol (in the section about CH), "used only for migraine." http://www.merckmanuals.com/professional/neurologic_disorders/headache/cluster_headache.html  I'm not trusting this doctor of yours at all now.   

But maybe that'll all be irrelevant . . . maybe your cycle is ending . . . Then you should get some busting advice for prevention and future treatment, as well as getting started on a serious D3 regimen. 

The energy drinks help some people with shadows, and some people find that ginger tea helps.

When you say you got your O2, I'm assuming you got a prescription, not the actual tanks, regulator, and mask yet(?).  Let us know when you have the physical stuff, so we can make sure it's right. (I suppose if your cycle is ending and your typical pattern has been every few years, maybe you don't want to get the O2 right now if you have to pay anything for it.)

[newfie]

I have the tank, regulator and a very crappy breather tube. Total cost was only $30.  I have also lost all faith in my Doctor in regards to treating me with this condition. He refuses to listen to what I tell him works for others and what I suggest I should be doing and taking, he refers to my condition as cluster migraines after I have repeatedly told him they are totally different than that! I am in the process of moving to a different province so my time with him is coming to an end. 

[CHfather]

Most important, how was today for you?   

A lot of people use a tube for breathing, by choice; it can be okay. Here's a video of a guy using a tube:

.  Start at about 5:30 on the video. (He's using a fancier tube, but you might get some ideas from him, and, as I say, the basic tube can be okay.)

I'm trying to figure out how to know what size your tank is.  Maybe you can get a sense from this photo. What you would typically want is the big one on the left (an M tank). It's about 3 feet high and about 8 inches across.  The one that's third from the left is often what people get. It's an E tank, and it's about 2 feet high and maybe 4 inches across.  (Actually, in the long run, you'd want to have at least one of each -- the M tank for home and E for car/work/travel.)  But, like I've said, here's hoping that this cycle is winding down and your next one will be . . . never.

[newfie]

Sorry for not replying earlier but I am the GM for 6 Tim Hortons restaurants (canadian coffee chain) and I have been crazy busy since feeling better....Yes I have the "E" tank, since I have had it I have had zero attacks...... just my luck but I am certainly not complaining! I was feeling as though I might be at the end of my cycle so to test myself I had a couple of drinks of rum.  That was 3 hours ago and nothing as of yet!! This has been my longest and toughest cycle since i started having these terrible headaches...... fingers crossed!!

[CHfather]

Great news!

The E tank is too small -- only good for a handful of aborts -- but, hey, maybe that won't be an issue for a good long while.

Most people just want to forget about CH once a cycle is over, but you'd be quite wise, I think to start the D3 regimen and consider preventive busting.

[ThatHurtsMyHead]

newfie,

Outstanding news on your PF time!!  (but don't tempt the beast, and stay way from alcohol for a while)

If your cycle has ended, you might find this a good opportunity to get setup with 'busting' material before any upcoming cycles.  (or better yet! start preventative busting to keep the attacks away!)

J

[newfie]

Sry but im in the middle of moving and have been very busy!! Whats the D3 regimen consist of?  Still having odd shadow headaches...grrrrr