Looking for Direction...

[timpromo]

Good afternoon everyone.  My name is Tim and I live in Richmond, Virginia.  I've had/been diagnosed with CH for 23 years.  I'm currently in a brutal cycle.  I've been "in cycle" for almost six weeks.  I started taking Lithium several years ago and my cycles have been brief (1-2 cycles a year - seemed seasonal) and, for the most part, tolerable until now.  I was actually headache free for the past two years.  Currently, I've been getting three headaches or so a day.  All of them are usually at night - between 10:00 PM and 4:00 AM. I abort using imitrex and I divide the syringes to make the injections last longer.  I can turn two syringes into 6 injections.  I learned this out of necessity.  The reduced dose takes longer to take effect, but it still works.  Last night was a bad night.  My physician suggested increasing the lithium by 1/2 tablet while "in cycle".  I've also been prescribed two predisone dose packs.  Each one stopped the headaches while I was taking them, but the damn things came back each time.  I took my evening dose of lithium, xanax, propolanol and melatonin and I still wasn't able to get any sleep.  I haven't slept much in several days.  I'm pulling my hair out with the headaches but also with not being able to lie down, relax, watch a football game or even work effectively.  I've had oxygen a couple of times in the past. My cycles are so intermittent that the monthly investment wasn't worth it.  I also seemed to have to battle with my neurologist to get it prescribed so my GP prescribed it for me.  I'm curious to know if anyone can suggest a technique(s) where I possibly get some rest.  Additionally, when is too much imitrex too much?  Any experience with that?  I'm aborting everytime and my pharmacist is advising that this can make things worse? I don't think anyone knows what these are like.  The frustration never gets old.  I don't know......any advice is appreciated.

[Dallas Denny]

Hi Tim

Oxygen used correctly will eliminate the need for trex for many folks....I've used one injection during the course of my last 3 cycles (6 years).....I routinely abort hits in 5 to 8 minutes using only O2 and coffee.....my experience is that trex causes rebound hits and extends cycle length.

Dallas Denny

[timpromo]

That's good information to have Denny.  I've had these for a long time and haven't had a doc yet tell me that.  The standard answer I always got was, "There's no evidence to support that" I'll discuss with the neuro on Tuesday and if I come out empty handed I'll head to the GP.  They never seem to have a problem giving me what I need.

[CHfather]

Sheesh.  The evidence:  http://jamanetwork.com/journals/jama/fullarticle/185035

Print out and bring with you.

[Pebblesthecorgi]

Lots of evidence for O2.  First line therapy in every credible medical reference.  You can find info on PubMed or ask your doc to look up clusters on Up-To-Date.  Pretty indisputable in this day in age.  A really bad cycle might need a short course of high dose steroids (60-100mg/day for 2 weeks then taper) and Verapamil (960-1200 mg) if you can tolerate it.  The other option is busting but the horizon to harvest is pretty long if you are acute. Seeds or DALT might be a consideration but can't speak to those for a bust.  Only hear about prevention.  Good luck.  O2 is the cleanest way to handle it while keeping other options open. 

[CHfather]

Pebbles wrote:  >>Seeds or DALT might be a consideration but can't speak to those for a bust.  Only hear about prevention.<<

 

Seeds have been used by many people here to stop a cycle, as well as for prevention.  DALT not so common here, but widely used by folks at the Facebook group for remission and prevention.

[Pebblesthecorgi]

Yes I agree with what you report.  Not to be a snob but the facebook group is far more diverse and less focused than the exchanges here.  For our new friend we forgot to mention the D3 regimen which seems to help many.  So to answer him and dealing with the current cycle.  Avoid imitrex once you get set up with O2 (essential for true cluster heads), may need aggressive dosing with steroids and verapamil, consider starting the D3 regimen, hydrate like crazy.  Once you get some rest and relief wean off blocking agents and consider either conventional prophylaxis or busting.  There are lots of other variations in the theory and implementation section and they can be tried systematically.

[CHfather]

Yes, Pebbles', I tried "contributing" at the FB group, and found the mixture of assertive opinion and actual knowledge to be something I couldn't handle.  It serves a valuable purpose, though.  There are least three people there who used to be substantial contributors here who have found very substantial relief with DALT, while on the other hand some here did not get relief from DALT.

 

Other things for Tim:

Yes, D3!  https://clusterbusters.org/forums/topic/1308-d3-regimen/

Some people find that sleeping more upright -- in a recliner or even at a table with your head on pillows -- helps with nighttime attacks.

An energy shot such as 5-Hour Energy, drunk at the first sign of an attack can reduce or even abort an attack. Many people prefer them icy cold.

You might want to take more melatonin. Some people go as high as 30mg. It's quite a cocktail you're taking at night, so I suppose you have to be careful about what you add to it.

Generally, 12mg/day of Imitrex is considered a "safe" dose.  But it has side effects, for sure, and there is research showing that sumatriptans cause rebound headaches and extend cycles.  Oxygen is your way out, as we have said.

I don't think the Xanax is helping with your attacks. Many people have found that skullcap is more soothing and less harsh than Xanax. You can find it as homeopathic drops or as a tea.

You might be taking the propranolol for some other condition. I don't think that beta blockers like that are as effective for CH as calcium channel blockers such as verapamil, though both treat hypertension.

The darn thing about lithium is that coming off it causes rebound attacks for many people.  That's one reason why it is mainly recommended for people with chronic CH.  I'd really consider trying the oxygen, D3, and maybe verap before stepping up the lithium.

[Pebblesthecorgi]

I agree with CHFather.  

 

Lithium is a tough drug and requires legitimate monitoring.  Third line therapy in most regimens.  Remember CH cases  are fairly rare and long term chronic or episodic is a small sub group.  This means few physicians will see many cases and their knowledge is based on the few cases they see.  This is a situation where the intellectually curious doc will seek out the most current knowledge and second opinions rather than fall back on antiquated knowledge or anecdotal results.  Which brings me back to my strong belief you must be your own advocate, educate yourself to the best of your ability, don't be a victim, act systematically and responsibly and partner with a physician who will listen and work with you.

[timpromo]

My apologies for not responding sooner.  I've printed out the O2 study and plan on reading it as well as taking it to my neuro. appt. on Tuesday.  My neuro. is pretty headstrong and I've trying to find a new one without too much success.  I think I'm at the end of this cycle.  I've been through 2 predisone treatments.  Each one stopped the cycle while I was on the dose, but the cycle resumed shortly after each regimen was completed.  I'm having inconsistent night headaches...every other night or so...only one...but enough to interrupt my sleep schedule and exhaust me.  I've experimented with melatonin from 6mg - 12 mg.  It hasn't helped me with sleep.  I take the xanax to relax enough to fall asleep.  I was nervous about taking the xanax with the melatonin so I only took melatonin in several different doses.  I end up just laying there staring at the ceiling.  However, the headaches that occurred while on the melatonin seemed like they were less intense???

[EvanFink]

A friend of mine recently suggested Big Ox O2 as a possible remedy.  Has anyone tried this?

[EvanFink]

In terms of oxygen, you might want to look into Big Ox O2.  The dosing is limited, but it's 95% pure oxygen and you don't need a prescription to purchase it.  I think you can buy it right off their website.

[CHfather]

Evan, which is it? In your post at another thread, you say "You might want to give Big Ox O2 a try. I've had success and I like the portability. www.bigoxo2.com"

 

But here in this thread you strongly seem to be saying that you haven't tried it yet.

 

Other people have mentioned versions of this kind of O2 system.  I have said that I very seriously doubt that it's enough O2, and high enough purity, not to mention that it's obscenely expensive.  So far, no one has come back to say I was wrong.

 

So, if you are offering a sincere suggestion and it's just your phrasing that is confusing, you are appreciated for doing that.  If you're trying to sell something that won't work to prey on others' suffering, you're not appreciated.

[amon10]

Melatonin has helped some, it might help you. You been given some excellent advice. Just my thought your Neuro seems like he doesn't want to accept 02 therapy, have you asked him why? It is generally effective and no side effects. If you can't convince him or get a new one, not that difficult to take it in to your own hands.

[Pebblesthecorgi]

Don't worry about the melatonin and xanax together if taken in prescribed doses.  They have different mechanisms of action and shouldn't potentiate each other.  Theres not enough O2 in those Big Ox O2 to be cost effective.  Might get you through a hit but may run out before it kicks in.

[outofcontrol]

Found a new neuro to see who deals with several CH patients. Started my cycle 10-7-16 and what a horrific one this is( 1 of the worst in my 32 yrs of this hell). Filled out forms before visit (prior meds taken). She spent 1 1/2 hrs of questions and Physical testing. She decided since I had never tried these meds we would give it a shot. On my way home went to family DR for a cold . I told him about my neuro visit and wanted to make sure his meds didn't counteract with my new ones. When I told him I suffer from CH he knew exactly what I was going through. The Prednisolone injection he said would help the HA. Sure as hell went 3 days w/o one. Now they're back. I used to have 1 a night @ 11 pm, now 6-8 a day ranging from 7-10's for the last few yrs when my "busting" supplies are not in season. new meds are Indomethacin, Migranal NS and Stadol. The migranal works for 1 hr and it's back again. Followed this with the Stadol and instant relief but the beast was back in 1 hr again. Sounds hopeless. The 1 good thing is the oxygen I finally have after all these yrs of suffering. The neuro couldn't believe I never was prescribed this before. It relieves the pain but not totally (manageable) 15 lpm . My only real relief is MM which break the cycle till the next year. Hopefully they will approve this treatment soon so we can get to a somewhat normal life. Sorry to bore you but no sleep and this beast beating my ass is getting old.

[CHfather]

O2 can, and probably should, work better for you than that.  It could just be a matter of your breathing technique becoming better, but I'd recommend three things.

 

1. A higher lpm regulator, which you can buy at amazon among other places.  Just be sure you get the right type -- larger tanks take a CGA 540 and smaller tanks take a CGA 870.  You'll be able to tell which you need when you see the pictures.  If it's 540, many people use this one -- http://www.harborfreight.com/catalogsearch/result?q=oxygen+regulator-- and there might even be a Harbor Freight store near you.

2. The mask designed for people with CH:  http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

3. Drink down an energy shot as you get on the O2.

 

Some other things to remember: Don't delay starting the O2. If you have any sense that an attack is imminent, get on it.  Stay on the O2 for 5-10 minutes after you've aborted an attack (you will be aborting them at some point) to help prevent recurrences.  If there are open holes in your current mask, tape over them (no room air should get in).  Use your hand, not the strap, to hold the mask firmly to your face.  Try looking down toward your feet as you breathe.  Hold the deep inhales in your lungs for a few seconds before you forcefully exhale.  There are probably other things I'm not remembering.

 

You don't say what meds you have tried, but from my perspective you have not been given a good prescription.  Indomethacin helps for only a very small percentage of people with CH (and it's really hard on your insides).  I have no idea why Stadol might work for you, and it's nasty stuff.  Migranal is of course used for migraines.  Maybe it would help CH.  Look, I'm not an expert, but it seems to me like you have three non-first-line abortives there, and no real preventive.  My reaction is WTF??  Does this mean you've already tried the standard CH meds, such as verapamil and sumatriptan, and somehow they didn't work (and you had the right dosages and delivery systems for them -- trex as an injection and as much as 720mg/day or more of verap)?    

 

If you haven't got yourself on the D3 regimen, do so.  It's not a miracle treatment for most people, but over time it will probably help you a lot.  Are you taking melatonin, at least 9mg?

 

If you're saying you don't have MM but would like to bust, what about using seeds?  They work darn well for many people, without the trip effects of MM.

[outofcontrol]

I do need to work on the breathing techniques and get a CH mask shown ( I suck the standard 1 flat ). I need to get a bigger tank since my insurance only will supply a E tank( only 5 a month) which I go through verrrrry quickly .I do use energy shots now but have to be careful due to HBP. The Stadol she said is a morphine type pain reliever ( didn't work last night). Imitrex is out--was my best relief for yrs even with the rebounds but had a bad reaction a few yrs ago --bad chest pains and couldn't catch my breath.  Heart checked out ok the next day--told to stop injections. Verap no help. I have been prescribed about 20 different meds used to treat CH to no avail even increasing the dosages to crazy levels which had me really screwed up physically ---oh and steroids which helped but had to stop before they caused damage. I found the area here where I can get a unit to grow my own MM. Feel it is a good investment. I work in the medical field and know how a lot of big PHARM meds can do real damage.I really want to thank you CHfather for all of the good info and for responding to me. I would only come to the site when I was in cycle, but I will be here year round to really keep up with everything and will try to accept my invite to the convention next yr---haven't gone yet to one

[CHfather]

doggone it, i don't believe that your insurance will only cover an e tank, and only five e tanks a month.  that sounds like a line you're being fed by the oxygen supply company.  but why the heck would they want to have to keep bringing you new tanks when they could just bring you a big h or m tank in the first place?  could be that they don't have regulators for the big tanks, i suppose, and don't want to bother getting you one.

 

if you can't get better answers from them, i'd consider going out and getting yourself a big welding o2 tank.  you'll also have to get a regulator for around $35, because the e-tank regs don't work on welding tanks.

 

i have a mental picture of you sucking an o2 mask flat, but i don't think you can do that even with a cheap mask of the right type -- a non-rebreather mask.  they're typically made of pretty firm plastic.   does your mask look like the one in this picture? http://www.mountainside-medical.com/products/salter-labs-high-concentration-oxygen-mask-with-7-foot-tubing?gclid=CLaCkfDWkNACFZSFaQodDAwIDw   if not, then i think they've given you the wrong mask, on top of everything else.

 

morphine doesn't help ch. 

 

when i asked about seeds, i was referring to rivea corymbosa seeds.  but i think louisiana is one of a few states (or maybe the only state) that has banned them.  if you can get them, they're a convenient and often effective busting agent while you're growing your other supplies.  more info here:  https://clusterbusters.org/forums/topic/684-5-lsa-seeds-of-the-vine/

[amon10]

CHfather I'm confused, that link isn't that a rebreather mask? Sorry maybe I'm not following correctly.

[CHfather]

Well, I feel really stupid now.  That is a picture of a non-rebreather mask.  But I realize that while I had assumed that a partial rebreather mask looked different from a non-rebreather, they might actually look the same, with just the valve functioning differently -- keeping all exhaled air out of the bag in the case of the NRB, and letting some of the exhaled air into the bag in the case of the rebreather/partial rebreather.  I can't quite figure out whether they look different, or just function differently.  Hopefully someone here will be able to clarify this.  Sorry that I assumed without actually knowing!

 

Doesn't really change my main point, though, which was that the NRBs that I have seen have a hard plastic form that you couldn't suck flat against your face, as I think you were saying. 

[amon10]

I always thought the difference was the rebreather mask had the vents in? Can someone clarify?

[CHfather]

A non-rebreather definitely has the vents, if you mean the circles of small holes near the top.  On a non-rebreather, at least one of them has a gasket that is supposed to keep room air out as you inhale; often one of them has no gasket. 

 

It appears to me, from some unreliable googling, that rebreather/partial rebreather masks also have the vents, but maybe they are both open, with no gasket. Again, the main difference in function, as I understand it, is that the partial rebreather lets some exhaled air into the reservoir bag, while the non-rebreather lets no exhaled air into the reservoir bag.

[amon10]

Thank you CHfather, feeling pretty stupid now.

[CHfather]

Well, since we're both feeling stupid, I guess it's good that it's just the two of us here.  :-) 

Are you feeling confident that the mask you have is a non-rebreather?  Regarding those vents, if you have an open one on your mask, you should tape it closed or hold a thumb over it as you inhale.  Don't want any room air getting in.  I guess we have established -- pending correction from someone who knows better -- that both a non-rebreather mask and a partial rebreather mask are likely to have those vents, so you can't tell them apart from that.  I guess (maybe making myself stupid again, or more stupid) you could determine which you have by exhaling into it with the bag empty and the O2 turned off. Seems like some of the air you exhale would go into the bag if it's a partial rebreather, but none would get into the bag if it's a non-rebreather.