Newbie with 02, increase in attacks, any advice/help?

[Dandownunder]

Hi all

Ever since ive decided to go the route of busting soon ive decided to give up the triptans  (they were taking to long to work anyway and making me feel like rubbish) Ive gone back to using Oxygen to abort my attacks at night. This is my second go at using O2 the first time i used it a year or so ago i didnt find it very helpfull but this time after adjusting the mask and my technique It works wonders usually at aborting the attack in 15 to 20 mins i then continue to breath in for 5 mins or so before ceasing. I usually start at 15l/p then as i feel the pain decreasing i slow the rate to 10l/pm only to save money as im going the the stuff so fast and having to refill my 2 bottles every 2 days and last night i went through both my bottles. 

Last night after falling asleep i had an attack every hour and a half right until morning, i lost count in the end but for my last attack i ran out of oxygen (not fun), it seemed as though after the first 2 attacks they were taking longer and longer to abort as well. Ive noticed some nights are worse than others but in general the attacks have come on quicker and more frequent again since using the O2

Is this normal with oxygen to have a increase in attacks or am i doing something wrong? Is there anything else i can do to stop them coming back so fast?

I should mention i am in the process of tapering down my torpiramate aswell at the moment so not sure if thats playing into it aswell.

Ive been on the d3 program for a year aswell a range of different iu doses and have started to take diphenydramine 50mg before bed with no success.

 

[Freud]

I have only been here for a year but I’ve never heard of O2 making things worse. It’s probably coincidence. Or related to the taper if I had to guess. Stay strong. Busting saved me. 

[jon019]

Hi Dan,

Also have not heard of or experienced O2 making things worse...suspect it's your cycle ramping up. You are doing exactly the right thing by staying on for a few mins after the hit subsides. Also used to get hit hourly at night (in high cycle)...for whatever reason the O2 worked better than the usual 15 min (only 5-8)...but back again in an hour. What I did was (guessing here) learned to wake up as soon as hit started (and no idea how I did that)...with my rig all set to go....just had to slap on mask and open valve. Left lights off, only swung knees off bed and stayed sitting, eyes closed, none of the usual movement, anger, angst, swearing...NO thoughts other than breath-breath-breath-breath. Never really woke up and could get back to sleep almost immediately. Usually got 5 or 6 hrs of sleep a night... which I was eternally grateful for because the alternative was NO sleep. Turned out my ATTITUDE about what was happening was just as important as the tools I was using...literally changed my life. Hoping someone with far more expertise in O2 checks in here...it's a good question others may benefit from....

What size O2 tank are you using? An e-tank would last me 1-3 days... so I BADGERED the local Lincare supplier to stock M60 tanks (needs a different regulator). About 3 times the volume so 3 times the lasting power. Heavier but not enough to dissuade... as they have a really neat handle that makes sclepping easier than an e without a cart!

No idea if the tapering off Dopeymax has any effect either way...it never made any difference for me.... beyond the worst side effects of any med I ever took. Look forward to the brain fog lifting and best wishes on the busting...you're in the right place for that.

Best

Jon

Edited November 29, 2018 by jon019

[Dandownunder]

Yeah not sure on what the size of the O2 cylinders are called there not the smallest ones but the size under the ones you need a trolley for. If things keep going this way ill have to get the next size up its to hard driving half hour away to get them refilled everyday, and running out sucks.  Its horrible when you have no relief so you just take a bunch of OTC stuff out of desperation to no avail. 

time to bust cant come quick enough, i hope that goes smoothly for me. 

Im keen for suggestions or tricks from anyone that might have something to add. At this point id even be I wouldnt say happy but a bit relieved just to go back to 1 or 2 bad attacks a night again.

[jon019]

Dan.....anything smaller than an E tank is a waste of time and effort. See chart at this link: 

https://www.bing.com/images/search?q=o2+tank+sizes+chart&qpvt=o2+tank+sizes+chart&FORM=IGRE

Don't they deliver? That's usually how O2 shops operate.....I got get 6 e's and/or 2 M60's at a time (picked up myself but was convenient)...

 

 

 

 

[Dandownunder]

yeah after looking at the chart id say i have 2 Es If i have to go back tomorrow ill organize the next sizes up i think. Not sure what that will cost though. 

they do deliver but i try and save money by picking them up. Its 10$ to fill per E and 20$ to hire for the month so its costing me a lot. if i continue to go through 2 Es a night me and my family will be in financial trouble 

[CHChris]

I think you are having slapbacks due to not fully aborting the attack.

I had the same experience when I started using oxygen.  I would get hit at night, 10 to 15 min on O2, and back to bed.  Repeat every 90 minutes all night.  This is not my usual pattern, I get hit at night, but usually only once or twice a night.  This went on for a few weeks, and I thought maybe O2 didn't work for me.  I was even starting to think O2 was making things worse.

I was experiencing  slapbacks because I hadn't fully aborted the hit, even though I was pain free after a few minutes on O2.  I bought the special Cluster mask, which was well worth the $25.  I increased my flow rate from 15 to 25 LPM and increased the time to 15-20 minutes and then the 5-10 minute cool down (10-15lpm) at the end. 

I am not an expert by any means, but I would recommend increasing the flow rate.  Sometimes I get worried about my oxygen supply and cut back the flow rate to conserve, and I regret it every time.  I can abort with 15lpm, but I sometimes end up back on the O2.  I have a gigantic H tank at home (the O2 delivery guy hates me) and an E tank for the car.  I never play with the low flow rates anymore (always 25LPM) on the E tank because I am at work and have a fear of running out of O2. I might use more O2 the first time, but I only need one trip to the parking lot.

I understand your desire to conserve oxygen.  My insurance won't cover it, and it can get expensive.  You might want to look into welding oxygen.  It is the same quality as medical oxygen, but comes in a different tank and is usually cheaper.  I have used welding oxygen in the past, and would not hesitate to use it again. Also, that big H tank of medical oxygen actually comes in a welding tank that is painted green.

Another idea I could suggest would be supplementing the O2 with an energy drink containing caffeine and taurine.  This has helped me abort daytime attacks.  However, I haven't tried it at night.  I have read from others on this board that they can drink an energy drink during a night hit and still go back to sleep. 

Above all,  I would recommend not giving up on oxygen.  Increase the flow rate and try to find an alternate (cheaper) supply.  You have proven you can get pain relief from oxygen, now you just have to dial it in to prevent the slapbacks.  You should get bigger tanks, too.  Those E tanks are awesome for the car or travel, but the big boys are best for the house.  My oxygen delivery company actually charges me the same price for the H tank as the E tank (which makes no sense to me, but works out in my favor).

Congratulations on kicking out the triptans.  I did that a few months ago and have felt much better.  I can't prove it yet, but I think it has reduced the number of attacks I get.

Also, congrats on kicking the topamax, the worst drug I have ever taken.  I'm glad it didn't help me, because the side effects were insane.  It would  have been a hard choice if it actually helped. 

 

 

[Dandownunder]

Thanks Chris that is all very valuable information and makes sense to me. I have a mask that was supplied to me it works but i think it could be better. The bag is to small so it fills up to quickly and i can empty it in one fairly deep breath, then depending on what flow rate i put it on determines how quickly the bag refills so 25lp just fills it very fast then the O2 keeps rushing out and feels like its going to waste. I think ill purchase the one from the site here unless i can find a similar one in my own country that will ship quicker. Ill get some bigger tanks from the supplier in the mean time and hope things improve when i try busting. I think if things dont improve however ill need to go down the welding O2 route to make it more financially sustainable. 

 

[jon019]

Dan,

...only a little to bit to add to the most excellent post from CHChris (and I'm likin' the double "ch" too)...

….you are already well ahead of the game with your O2 procurement. Many of us have had to pay out of pocket... and it seems more and more these days O2 shops are not as willing to accommodate that like they used to. As Chris noted....many also charge the same rental for different sized tanks....which means a larger tank (even if costing more) will be more cost effective in the long run.... 

...are you sure about extra cost for delivery? I used to pick up my own but there was no cost difference if I had delivered (self pay or insured). Sounds like you've already looked at that... but just in case...

...in the long long run I'd do the welding oxygen dance if I were you....scores of other clusterheads do...

...here is the link for the clustermask….it remains one of my FAVORITE possessions:

http://www.clusterheadaches.com/ccp8/

….you might want to poke around that forum too

[Dandownunder]

Thanks for the Link Jon im definitely going to buy that mask for sure. 

Yeah i looked into delivery they do charge, i live in sort of a semi rural area also so its a bit out of there way. 

I visited a friend who is into welding today and he gave me a ball park idea of what he has payed for welding oxygen and its substantially cheaper, so yeah in the long run that will be the go i think.

An update also when i got my first attack last night as usual within an hour of falling asleep i sucked on the O2 for a full 10 or 12 mins after i got rid of the pain even though i was exhausted and i didnt get another attack for about 4 or 5 hours instead of every 90 minutes like the night before. So thats a better result.

Unfortunately I cheated on the second attack out of exhaustion and took a triptan and didnt stay on the O2 as long. I cant afford to do that again as I plan on trying to bust in a week.

[xxx]

Hey Dandownunder,

We ran a pilot study of the oxygen demand valve method of aborting CH back in 2008 with Seven (7) CHers (6 CCHers and 1 ECHer) collecting abort time and pain level data on every abort with this method of oxygen therapy for a period of 8 weeks each.  I developed this method of oxygen therapy as a CH abortive in 2005 using a flow rate type oxygen regulator good to over 70 liters/minuet and modified it to work with an oxygen demand valve in late 2007.  I also hold a patent for the method of oxygen therapy.

An oxygen demand valve delivers oxygen on demand just the same as a SCUBA diver's 2nd stage regulator.  The harder you try to inhale, the higher the oxygen flow rate.  You basically control the oxygen flow rate with respiration rate at deep tidal volumes.   The procedures I developed call for a respiration rate high enough to support hyperventilation.  That respiration rate equates to an oxygen flow rate of roughly 40 liters/minute. 3 of the 7 CHers used a 0 to 60 liter/minute "InGage" regulator from FloTec set at a flow rate of 40 liters/minute with the Cluster Kit mask from CH.com with the 3 liter reservoir bag.  We also had one of the CHers in this pilot study, very experienced in the use of oxygen therapy as a CH abortive, collect abort time and pain level data for a week using the standard disposable oxygen mask with 1 liter reservoir bag and an oxygen flow rate of 15 liters/minute (curve shown in red).  The results are illustrated in the following graphic.

As you can see, oxygen therapy at flow rates/respiration rates that support hyperventilation result in significantly shorter abort times and higher efficacy rates than that experienced at a flow rate of 15 liters/minute with a disposable oxygen mask. 

We used ≤ 20 minutes to an abort as the primary endpoint for efficacy.  All but two aborts took ≤ 20 minutes so there were 364 successful aborts for 366 attempts for a 99.6% efficacy.  The two failed attempts occurred when the CHer got trapped away from home and his demand valve system when his CH hit.  He was either locked out of his home or away from home shopping.  Both times he was unable to start this therapy until his CH pain level had already reached 10 on the 10-Point Headache Pain Scale.

There were no differences in abort times between the oxygen demand valve and InGage regulator set at 40 liters/minute.  Moreover, the mean abort time across all pain levels was 7 minutes flat for oxygen therapy at flow/respiration rates that support hyperventilation.

This graphic also provided an interesting finding that no other study of oxygen therapy as a CH abortive has reported.  The higher the CH pain level at start of therapy, the longer the abort time.  This little factoid should make it obvious to start oxygen therapy at the first sign of an approaching CH while the pain level is still low.

We also discovered a curious phenomenon where the frequency of CH increased for 3 to 4 weeks after starting the demand valve method of oxygen therapy.  This up-tic in CH frequency continued to a maximum at week 5 of the 8 week long study then dropped to less than the starting frequency by week 8.  All seven CHers in this pilot study experienced this same up-tick in CH frequency.

All this happened before I developed and started taking the anti-inflammatory regimen CH preventative treatment protocol with 10,000 IU/day vitamin D3, Omega-3 fish oil and vitamin D3 cofactors in October of 2010.  Since then, my oxygen demand valve has been stored in a zip lock bag unused.

The anti-inflammatory CH preventative treatment protocol has proven to be effective in the first 30 days by 80% of the CHers who start this regimen.  They experience an 80% reduction in the frequency of their CH from an average of 3 CH/day down to 3 to 4 CH/week.  50% of the CHers who start this regimen experience a complete and lasting cessation of all CH attacks in the first 30 days after start of regimen.  This regimen is effective for both episodic and chronic CH although ECHers tend to respond at a slightly higher rate. 

You can download a copy of the anti-inflammatory CH preventative treatment protocol at the following link.  Take a copy to your PCP/GP to discuss and ask for the lab test of your serum 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status.  The normal reference range for this lab test is 30 to 100 ng/mL (75 to 250 nmol/L) CHers with active bouts of CH tend to have a mean 25(OH)D serum concentration around 23 ng/mL at baseline before starting this regimen and a 25(OH)D serum concentration around 80 ng/mL (200 nmol/L) after 30 days on this regimen.

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

There are plenty of CHers down under taking this regimen who will be happy to help you source the needed supplements.

Take care and please keep us posted.

V/R, Batch

Edited December 4, 2018 by Batch
typo

[Dandownunder]

Thanks for your response Batch, ill look into the  oxygen demand valve, is there a set up on the market for Cluster Heads? or is it something i have to try and put together?

Yeah im well aware of the Vitamin D protocol have studied that Link in detail for the last year and a half, unfortunately its not helping me, ive tried all the doses and adding all the extra recommendations with no success. I still continue to persist out of fear of stopping just in case things get worse.

[Siegfried]

Hello Dandownunder,

It is correct that several persons here have reported more rebounds because of oxygen use. I do not know if this is an actual fact or rather a subjective impression. But I would definitely not consider this as a show stopper for using oxygen.

Rebounds can also be attributed to the nature of your cluster headaches. Currently I am just coming out of a 24 hours barrage of attacks. Went through 3000 liters of oxygen but that is just the nature of how my CH are. Once they start, there is no stopping on them and they follow each other in rapid succession with only 30 min of relief in between the attacks. But on the other hand when they stop, they not come back for at least a week. While most people have the usual 1-3 attacks per day during a cycle, mine come in clusters (non-stop for 1 or 2 days and then a gap of a week or more).  Maybe you have a similar pattern.

With regard to oxygen breathing technique; Batch has published a very good document on this. Please read it. What he is saying is that while breathing out, you have to crunch your abdomen to get the last bit of CO2 out of your lungs before breathing back in. This is a very good advice. Before I used this technique I was not really able to fully abort a CH attack. I used oxygen only to bring down the pain or just to prevent CH from occurring all together by aborting the preliminary shadows. But since I use this breathing technique with abdominal crunch, I am now able to fully abort attacks with the optimask at 15l/min. So I would say, keep trying, experimenting and you will get to something that will work for you...

We as CH sufferers can be happy to have oxygen as a treatment. Up to a year ago, when I got my heavy migraine attacks, I tried oxygen on them as I thought it would bring maybe some relief but to a migraine attack, oxygen does absolutely nothing, zero ... same for hemicrania. They can only resort to these unhealthy medications. While with CH, I start to breath in that stuff and within a few minutes, magic starts to happen :)

All the best !

siegfried

 

 

[Concerned mom]

Can you share the link to the oxygen breathing technique? 

[Dallas Denny]

Hey Dan

Let me shoot a message to our friend dinmerced and ask him to stop by....he is the demand valve procurement guru.....comes across some great deals pretty regularly

Dallas Denny 

[Dandownunder]

Cheers siegfried, My CH are usually always at night, within a hour of falling asleep and then again 3 or 4 hours later and usually in the morning as i am waking up or maybe a few hours after i have woken up. on average i have 2-3 bad ch in 24 hours sometimes only 1 which is nice and thats usually the one after falling asleep or the one in the morning, they are the most regular for me. But i do get them every day, the other night was a new experience for me every 90mins. I get Ch all year but they get worse this time of year in our spring/summer and then they drop in severity and frequency in winter/autumn(fall) with the odd bad flare up coming at anytime of the year.

Yeah ill trying that oxygen breathing technique for sure.

Thanks Dallas Denny, I have to keep in mind that if i was to buy a set up it will have to be shipped overseas most probably.

[dlnmerced]

Being down under makes it a little more difficult. However, there is an inexpensive alternative demand valve you can try.
Using a demand valve requires the demand valve, a pressure reducing regulator and a mask or  mouth tube.
This dive regulator has a DISS connection.   If you get a welding tank you can use a standard 2 stage regulator to reduce the pressure to 50psi and hook the dive regulator to the output.

Ebay.au dive regulator from China.

welding regulator.

In the USA we can buy medical regulators on ebay. Appartently they are not permitted down there.

This medical regulator has DISS 50 PSI port under the pressure gauge in addition to the flow controlled port on the end.

[dlnmerced]

A mask like this one will fit into the dive regulator.

Anesthesia mask

These are just examples. You can do your own search to see what will be best for you.

A medical demand valve can be pricey. medical demand valve. You would also need the DISS connection hose.

[ThatHurtsMyHead]

Word of caution.  If you're going to try to use a SCUBA 2nd stage regulator.  First make sure it's rated for 100% O2 by the manufacturer.  Most are not and are manufactured with rubber O rings and pressure valves that are not O2 compatible.  They are also mostly lubricated with hydrocarbons that can spontaneously combust if exposed to 100% O2.  Once you verify that a manufacturer's regulator is O2 ready you should make sure it's O2 "Clean".  Most any SCUBA shop can O2 clean a regulator for you for a few bucks.

I normally dive mixed gases and O2 clean gear is a must to prevent your gear from catching fire or malfunctioning.  Hydrocarbons can spontaneously combust in pressurized pure oxygen. 

I don't mean to scare anyone, but using pressurized O2 should only be done with O2 certified and cleaned equipment.

J

[dlnmerced]

Sound advice although i have not experienced any problems with my rig. But .. I also would NEVER use an $18 regulator underwater. 

Edited December 4, 2018 by dlnmerced
added picture

[xxx]

Hey Dandownunder,

There is almost always a reason why some CHers don't respond to the anti-inflammatory regimen.  Have you had a recent lab test for your serum 25(OH)D concentration?  The most common reason for non-response is a low 25(OH)D response below the therapeutic range around 80 ng/mL, (200 nmol/L).  If that's the case, a higher dose of vitamin D3 may be needed.  Several CHers including me have found the Bio-Tech D3-50 water soluble vitamin D3 is more effective than the liquid soft gel vitamin D3 formulations.   Taking all the cofactors...  including Omega-3 fish oil and a 3-month course of vitamin B 100 Complex is essential.

If your serum 25(OH)D concentration is up in this therapeutic range and you're still getting whacked...  the problem is either an allergic reaction or diet related allergy. Allergic reactions are a spoiler for this regimen as they result in a flood of histamine that makes nearly all forms of CH intervention ineffective,   A week to 10-Day course of a first-generation antihistamine like Benadryl (Diphenhydramine HCL) at 25 mg every 4 hours throughout the day addresses most allergic reactions. Just be careful and not drive as this much Diphenhydramine HCL will make you drowsy.  If you need to drive during the day, wait until you're home for the day then take 50 mg Benadryl as you walk through the door and another 50 mg at bed time.  If there's no favorable change in CH patterns after a week of Benadryl, discontinue.

Diet is an important consideration for all CHers and migraineurs...  The first two diet rules are zero sugars of any kind and no wheat products including bread, pasta, cereals, pizza and grain oils like Canola.  Canola and grain oils come from GMO grains so are almost are contaminated with glyphosates (Roundup resistant genetically modified grains).  You can eat all the organic grass fed meats and free range poultry including eggs, wild caught fish, green and yellow veggies, tomatoes and avocados you want. Whole fresh NON GMO Organic foods are best. Limit the fruits to a serving a day of blueberries, blackberries, raspberries or strawberries.  Basically you're looking for a low carbohydrate diet, the Atkins diet or a good ketogenic diet that switches your metabolism from sugar burning to fat burning. Metabolizing dietary fats and any excess fat you may have around your middle and backside results in ketones being eliminated in urine. 

Pick up some keto test strips at your local chemist/pharmacy.  A few drops of urine on the keto test strip will tell you if you're doing good or cheating on your diet.   As long as the test patch turns pink to purple, you're diet is good.  If the test patch remains beige, you've been cheating... A Big Mac or two slices of toast is all it takes to revert back to a sugar burning metabolism...  Better living through chemistry...

A 24 hour fast will help kick-start any of these diets.  Be sure to drink at least 2.5 liters of water a day.

Take care and please keep us posted.

V/R, Batch

Edited December 4, 2018 by Batch

[ThatHurtsMyHead]

***Warning***

ok, trying to make sure someone doesn't kill themselves here.  Oxygen under pressure in the presence of hydrocarbons WILL EXPLODE.  That is a simple fact of chemistry.  I appreciate dlnmerced's opinion and advice, but do NOT use SCUBA regulators or equipment with 100% O2 unless they are O2 certified by the manufacturer AND O2 clean by a SCUBA shop.  There are reasons some doctors are reluctant to prescribe Oxygen.  Oxygen and hydrocarbons under pressure will explode. 

It's great dlnmerced has been lucky to date, but having a regulator explode in your face is not something anyone wants.  If you follow his advice, make sure your regulator and hoses are properly certified for 100% O2.  Any questions, feel free to speak to your Oxygen supplier or SCUBA shop will voice the same warning.  

J

 

 

[ThatHurtsMyHead]

This PDF is pretty self explanatory of the dangers...

 

DON'T_MIX_OXYGEN_AND_OIL.pdf

[ThatHurtsMyHead]

Another warning..   I would strongly recommend NOT using poly tubing with the 50 psi regulator port.  It might not explode right away, but I'll BET it will eventually.  Polly tubing is not rated for 50 psi.

J

[spiny]

Small suggestion here. You currently have a non-rebreather mask with a bag that does not support your breathing. You can take an unscented fresh garbage bag and use that instead of that little thing giving you a hard time. 

Tie up the open end tightly. As in air won't leak tight. Now, cut a hole in a corner where you are going to either push the stub of the previous bag or the bag with the bottom cut out. Remove or open the bottom of the bag on your mask and insert what is still attached into the garbage bag. Tape that up really well. Now you have a really big bag to hold your O2! Then you will have the pleasure of plenty of O2 for your next breath waiting for you - not you waiting for it. Not the best rig, but beats out running your O2. Turn on your O2 and grab a few slurps of that caffeine while it gets up to speed. Less than a minute and you are on it. That should get you through until your cluster mask gets there.

Personally, if I can't get the high flow needed, it is a waste of money to use it. Takes a looong time to get relief and the relief is not lasting at all. Like executing a bat turn in the living room and heading back to the office cause it is back not lasting.

When doing your post hit breathing, dial the O2 back to match your breathing. You should be breathing at a normal rate at that time, so you  won't likely need 15 or 25lpm. 

And no grease or oil or anything on the threads of anything where you are pumping O2. THMH gave you a great primer on that one.  

One more item. Try holding a full inhale of O2 for 10-20 seconds. It really does help. Then exhale with that crunch. Works great. As your pain levels drop, you can relax a bit on your breathing technique. By the end, you should be breathing normally.