Episodic CH sufferer - new here

[CHLeah]

Hey all,

So glad I discovered this community. 43 year old female here and I've been getting episodic CHs since I was a teenager. I'm in the middle of a cycle now (heading into week 2) and it's been wreaking havoc. They always hit at night so I have been sleeping terribly and am a total wreck the next day.

I'm kind of freaking out as I have a big work trip coming up on Sunday, I have to be "on" all day for five days training other people, and I pray I can get through it being in the middle of a cycle.

Feel like I can't really complain tho, as I am an episodic sufferer. I don't know how those of you who have this chronically do it. I am inspired by you.

The problem I have found is that they do not strike consistently at the same time each year, but they do strike once a year. Fall/winter seems to be a bit more common than spring. I'm so frustrated since it's hard to predict, and when I'm in the middle of an episode, by the time I can get get it together, a specialist is not available for months usually. By then, the episode has passed and I kind of go into this weird state of denial until the next episode hits. I think there is this part of me with magical thinking that hopes they will never return. So I have never seen a specialist for this. Nuts, I know! 

Of course my Primary care doctor, the only one I could get in to see quickly last week, prescribed the sumatriptan nasal spray which doesn't even work, plus I know they cause rebound headaches with overuse. And I get these every day when in a cycle! When I told this to my PDoc, she said the nasal spray doesn't cause rebound headaches. How does that even make sense? Grrrr.

I am going to be more pro active this time and get in to the specialist in my area who is on the CB suggested Dr list, whenever I can - even if the cycle has already passed - so I can have an actual strategy in place when these strike again next year. 

Also looking into maybe trying Gammacore? 

The D3 regimen looks kind of intimidating, but I probably need to give it to try.

Stocking up on energy shots too.

And definitely am going to look into busting. Unfortunately before I found out about it, I had already tried the nasal spray once out of desperation, so I have to wait 5 days. Ugh!!

The tips in this forum have been invaluable. Thank you!

 

[jon019]

Hi Leah....welcome aboard...sorry you need to be here..

...couple of thoughts:

have you tried oxygen? Saved my sanity and perhaps my life. Kept tanks at home, in the car, and in the office. Even when travelling I was able to arrange for tank delivery to my hotel through Lincare….it was an easy online sign up. With the proper mask and technique it became a "normal" thing for me....and even coworkers got used to seeing me 'use"...without calling 911 :). Quick, easy, relatively cheap, NO side effects.....ya got nothing to lose.

...my abort of last resort is Zomig nasal spray (5 mg)….99% effective after O2 (rarely), meds (verapamil), and energy drink failed....with no rebounds and 18 hr window of "safety"...YMMV but might be worth a try...

...the D3 regimen is not as intimidating as it looks....while it's a bunch of different supplements....it is just supplements.....and even if ya didn't have CH it's good for you and very inexpensive. Get yourself a pill caddy and a routine and join the 80% who have found success...

...good luck with your training session....one of my proudest achievements was giving a sales presentation to some VERY important clients while getting hit with a 7-8 CH. I had to keep turning my head so they wouldn't see the tears coming from the hit side eye....and I don't even remember what I said...but we got the contract! And maybe you're one of the "lucky" ones...and stress is a prevent...just watch out for the wind down hit afterwards...those can be a bitch!

Best

Jon

[CHfather]

'Leah,

[Started this before Jon's post . . . Nothing to add, really, but a couple of thoughts.]

For some people, the nasal spray is fully effective, so it makes sense to have tried it first. (And in fact there is some evidence that it is less likely to cause rebounds than the injections (I confess to not being a 100% believer that judiciously used injections cause rebounds, but it's probably safer to accept that they do and try to avoid them).  At this point, can you contact your doc to say the nasal isn't working and ask for injections?  (If you get that, note that you can take apart the autoinjector and self-administer much smaller doses, which will make the effects much more tolerable and save $): https://clusterbusters.org/forums/topic/2446-extending-imitrex/).

You can use welding O2 to set up an O2 system if you need to. At least 15% of people with CH do it that way (my guess).

 

 

[gail CRUTCHER]

Gail here~~trying to learn how to set up welder's oxygen for myself. Never did anything like this, but found that with a tiny little cannister of Boost oxygen, I aborted a CH. yesterday. Bought all we could find today and just about have taken care of another CH. MIne are chronic, and usually twice a day. Can someone give me a play by play?

Thanks. 

Edited August 25, 2018 by gail CRUTCHER
misspelling

[Freud]

3 hours ago, CHfather said:

'Leah,

[Started this before Jon's post . . . Nothing to add, really, but a couple of thoughts.]

For some people, the nasal spray is fully effective, so it makes sense to have tried it first. (And in fact there is some evidence that it is less likely to cause rebounds than the injections (I confess to not being a 100% believer that judiciously used injections cause rebounds, but it's probably safer to accept that they do and try to avoid them).  At this point, can you contact your doc to say the nasal isn't working and ask for injections?  (If you get that, note that you can take apart the autoinjector and self-administer much smaller doses, which will make the effects much more tolerable and save $): https://clusterbusters.org/forums/topic/2446-extending-imitrex/).

You can use welding O2 to set up an O2 system if you need to. At least 15% of people with CH do it that way (my guess).

 

 

I’m not sure if the community is aware of this newer drug Zembrace or not, but it saves my a$$ when I have real bad hits or something important to do. It’s half strength sumatriptan so you can take 4 doses a day instead of 2. How many mg do you take when splitting an autoinjector?  My insurance will only pay for 16 injections a month. So I save them for important days. I have been able to stockpile some since successfully busting with MM. 

Edited August 25, 2018 by Freud
Grammar

[CHfather]

Zembrace is 3mg.  You can split a 6mg autoinjector and probably get by with 2mg, but the hassle might not be worth it.  I think Zembrace is "off label" for CH, and is technically only for migraines, but it's definitely plenty to do the job for people with CH.

Edited August 25, 2018 by CHfather

[CHfather]

1 hour ago, gail CRUTCHER said:

Gail here~~trying to learn how to set up welder's oxygen for myself. Never did anything like this, but found that with a tiny little cannister of Boost oxygen, I aborted a CH. yesterday. Bought all we could find today and just about have taken care of another CH. MIne are chronic, and usually twice a day. Can someone give me a play by play?

 

Gail, I just posted the following elsewhere here at this board. We have been encouraged to make the disclaimer that using welding O2 is not medically recommended.  It's amazing to me that you could abort with a can of Boost.  That's great news.

>>>Welding O2.  The ideal mask is this one: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit   You can get a standard non-rebreather mask from amazon.  You can also get a regulator there.  Recommending a specific regulator used to be simpler, because Harbor Freight had a perfect one that was inexpensive.  You want one that has an adapter for a barbed fitting that will hold your mask hose most easily and effectively.  CGA 540 is the type that fits all welding O2 tanks.  This one at amazon looks like it would work: https://www.amazon.com/IMAGE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_1?ie=UTF8&qid=1535222274&sr=8-1&keywords=cga+540+regulator  And this one: https://www.amazon.com/Yaetek-Regulator-Cutting-0-200PSI-0-4000PSI/dp/B073P1C18S/ref=sr_1_11?ie=UTF8&qid=1535222716&sr=8-11&keywords=cga+540+regulator  I just can't say for sure.  A welding supply place will sell you a regulator, but they're typically expensive and don't have the barbed fitting (you can buy an adapter with that fitting at many hardware stores for a few bucks).

You probably know your way around a welding business a little!  You just buy a tank, or a couple of tanks, and do not mention that they're for medical use.  60 cu ft seems like a pretty good size, particularly if you get a couple of them.  The bigger the better, of course, but since you have to bring them in to be "refilled" (replaced, actually, usually) you might not want to be wrangling anything much bigger than a couple of 60s.  Maybe you'd also want a 40 cu ft for greater portability (car, etc.).  You probably also want a cart, too.<<<<

More to you, Gail. If you don't feel comfortable with the buying process because you don't know what questions you might be asked, it seems to a lot of people make up some cover story in case they're asked, like their nephew is coming to town and going to do some welding and asked you to pick up these tanks for him. You don't know nothin' beyond that.  I believe you have said that you are nearly as old as me, maybe even a year or two older, so just a warning that it could be that tanks more than 40 cu ft will be kind of heavy to schlepp around.  A 40 cu ft tank is about 1100 liters, so at 20 lpm that would be about 55 minutes' worth, and about 75 minutes at 15lpm.  You might not need a flow rate that high if the Boost helped you, or you might not need much to abort, but obviously you're not going to get more than at most maybe 6 or 7 aborts/tank, and possibly fewer (particularly since my anecdotal experience, and that of some others, is that for some reason the O2 becomes less effective as more O2 has been used).

 

 

Edited August 25, 2018 by CHfather

[spiny]

Not to rebut CHF's excellent post, but I would suggest one 60 and one 90. The 60 is not required to be capped when traveling, so you can have your mask attached to it on the road. It is not an issue for me to lift and load. BTW - I am old with a torn rotator cuff, so that says something. A 90 will last longer of course and I have found the 60 very hard to come by. So, I use one of each and try to keep at least one completely full at all times. Yes, I can haul the 90 too, but it is heavy. Of course the shortage of 60's may be just the people I have to deal with!

It really is easy to set up. Just know not to use grease, oil or any lubricant or teflon tape on the threads of the tank when you screw on your mask. You never use those around O2. All that you really need is a big adjustable crescent wrench to attach the mask to the tank. Tighten the nut on the regulator as tight as you can. Turn the regulator off with the dial. Open the valve on the tank and listen - no sound means no leakage. With the regulator off, any hiss of escaping gas would be coming from the nut you just screwed on.

I bought them for 'my welding set up' and needed two due to  high cutting torch usage. Never had a question asked, just made the statement and paid for the tanks. Owning them, I can have them filled anywhere, not just at the company I rent them from. It is a plus if you travel. And I can go on a 'welding binge' and buy as often as I want with a smile.

Hopefully this helps a bit!

[gail CRUTCHER]

Thanks so much for trying to get me on my way. Tomorrow my main objective is to try to get one of my Drs to write me a prescription for it and I may be just dreaming. My PCP quit while I was in the hospital just a short while ago~I must've driven her to it! In the meantime, I've picked up a new Dr (nephrologist, who BTW suffered CH's while serving his residency) who seems to be trying to help me. 

Against the odds, my CH's began in my early 70's and I wasted a couple of years with a neurologist who never had the intention of doing more than dispensing drugs. None of them worked and when I'd run the gamut he told me simply there was nothing he could do for me. Too bad I wasted that time.SInce then I've seen just about every kind of Dr, none of which was able to help. So Cluster Busters is my go to help, and by now my Ch's are more frequent, usually 2 a day. To say that I"m desperate would be an understatement, but I do know I'm not alone. 

I wish I could watch someone using oxygen treatments, as IS think that wold help me, rather than just reading how to.Are there any you tube presentations that you jnow of?

I am clinging to the hope that this will help me. Since no one seems able to discuss the use of mushrooms, surely there is a way we can communicate about it meaningfully. I don't understand all the abbreviations used here that seem so common~~but this is all new to me. Phone numbers? PM? I have no idea what that means .

As you can see, I need all the help I can get and will go to the welder if that is the only I can have oxygen.

[CHfather]

1 hour ago, gail CRUTCHER said:

I wish I could watch someone using oxygen treatments

I like this video, where the instruction begins around 6 minutes in.  He uses only the breathing tube from the O2ptimask (now called the 
"ClusterO2 kit").  https://www.youtube.com/watch?v=eX76JrEvNxE  Here's another one, using the mask, where the instruction begins at about 8 minutes 15 seconds in.  https://www.youtube.com/watch?v=HrcB-ysGt1s&t=8s  Once you have the basics, it's quite straightforward and you'll develop your own best technique.

1 hour ago, gail CRUTCHER said:

Since no one seems able to discuss the use of mushrooms, surely there is a way we can communicate about it meaningfully.

There's plenty of talk about mushrooms here, but it's at the boards that are not open to visitors, such as Share Your Busting Stories and Theory and Implementation.  Plus there's a lot of written information in the ClusterBuster Files section, in the numbered files.

2 hours ago, gail CRUTCHER said:

PM? I have no idea what that means .

PM is "private message" (or "personal message," I guess).  If you click on someone's name at the top left of his/her post, you can "message" that person separately from posting at the board. (There are other ways to message people, but that's the simplest.)  

2 hours ago, gail CRUTCHER said:

None of them worked and when I'd run the gamut he told me simply there was nothing he could do for me. Too bad I wasted that time.SInce then I've seen just about every kind of Dr, none of which was able to help.

What pharma drugs have you tried?  I feel like I remember a post from you where you said you thought verapamil was helping.  If injectable sumatriptan (Imitrex) didn't help, I'd start wondering whether it's CH that you have (there are some CH "lookalikes" that don't always respond to triptans, but CH almost always does).   

[CHfather]

7 hours ago, spiny said:

Not to rebut CHF's excellent post, but I would suggest one 60 and one 90. The 60 is not required to be capped when traveling, so you can have your mask attached to it on the road. It is not an issue for me to lift and load. BTW - I am old with a torn rotator cuff, so that says something. A 90 will last longer of course and I have found the 60 very hard to come by. So, I use one of each and try to keep at least one completely full at all times. Yes, I can haul the 90 too, but it is heavy. Of course the shortage of 60's may be just the people I have to deal with!

No problem and no real disagreement, spiny.  But people getting welding O2 for the first time don't really have a chance to see how heavy/unwieldy it is for them before they buy tanks, so I think it might be a good idea to go on the lighter side at first.  They can always be swapped for a bigger tank next time.  I also think a lot depends on how you're going to store and transport them.  If they're practically always on a cart, weight is only an issue when putting them into a vehicle and taking them out when getting new ones.  I would not much like to get a 90 out of the trunk of a car by myself. "We" (since it's my daughter who has CH, as you know but maybe not everyone reading this knows) now have a pretty good collection of 60s and 40s that do the job.

[gail CRUTCHER]

On 8/27/2018 at 1:02 AM, CHfather said:

I like this video, where the instruction begins around 6 minutes in.  He uses only the breathing tube from the O2ptimask (now called the 
"ClusterO2 kit").  https://www.youtube.com/watch?v=eX76JrEvNxE  Here's another one, using the mask, where the instruction begins at about 8 minutes 15 seconds in.  https://www.youtube.com/watch?v=HrcB-ysGt1s&t=8s  Once you have the basics, it's quite straightforward and you'll develop your own best technique.

There's plenty of talk about mushrooms here, but it's at the boards that are not open to visitors, such as Share Your Busting Stories and Theory and Implementation.  Plus there's a lot of written information in the ClusterBuster Files section, in the numbered files.

PM is "private message" (or "personal message," I guess).  If you click on someone's name at the top left of his/her post, you can "message" that person separately from posting at the board. (There are other ways to message people, but that's the simplest.)  

What pharma drugs have you tried?  I feel like I remember a post from you where you said you thought verapamil was helping.  If injectable sumatriptan (Imitrex) didn't help, I'd start wondering whether it's CH that you have (there are some CH "lookalikes" that don't always respond to triptans, but CH almost always does).   

I can't even find a "reply" option, so I'm trying "quote" and hope that works. Thanks for every bit of help you offer. How can I find the Cluster 02 kit? Yes, Vera;pamil did help reduce the frequency and ferocity, but sumatriptan has remained my go to. 100 mgs elevates my BP leaving me with one more fight. Now my blood calcium is very elevated as well,and I know I MUST leave sumatriptan behind.WHile it has made life possible, it is also shortening my life every day.

[gail CRUTCHER]

Learning to navigate the forums here and trying to find Theory & Implementation~~~

[CHfather]

 

gail', the box below the most recent post should say "Reply to this topic" in it. Just click in the box and you will be replying.

Click on the link at the end of this sentence to get the ClusterO2 Kit: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

The Theory and Implementation board is accessed from the Home page. You will see the word "Home" at the top left of every page, just under the menu items that begin with Forums.  You can only see and access the Theory and Implementation board if you are signed in as a member, because that board is only open to members.

Notice also that each time you create a post, you will see at the bottom of the page something that says "Notify me of replies." Since you are posting in many places, that might be helpful for you.  Your best bet is to start a new topic at either Share Your Busting Stories or Theory and Implementation (I think FunTimes mentioned how to do this) and then your primary conversations can be kept in the same "thread" and will be easier for you to find.

Edited August 29, 2018 by CHfather