Newish to the club

[FunTimes]

I have been dealing with Clusters for about 4 years now and have viewed this site several times over the years. I created a login this week to just release a little. I started out thinking I needed a root canal due to headaches and had that done with no relief. I was then sent to a different oral surgeon who knew I had cluster headaches as soon as I walked in the door of his office. I was then sent to a neurologist who seems to be on top of his game with the newest cutting edge treatments for clusters and he set me up with a clinical trial for a stimulation implant that went into my cheek. I have been in that study for a year and a half now and it does not seem to help me.

I am on the verapamil 3x's a day, Motrin like candy when a hit comes on and sumatriptan to try to kill the pain. I have tried oxygen in the past with no luck. Ice packs and rolling around on the floor until the pain lets up. I broke my hand from hitting the floor during a bad night of headaches and did not know it till the next morning. After reading about the oxygen on this site over the last few weeks I decided to try it again. I picked up 3 tanks this past Monday and gave it a try 3 times the first day. I only got the crappy mask that came with the tanks and I could not get the high flow regulator but I figured that was better then nothing and I had the headache anyway so what the hell. It seemed to help on the first go around but knowing I needed the better mask and regulator I went on a hunt for the better tools. I ordered a regulator from amazon that will let me get the better flow rate and a recommended mask from another cluster site so I hope that with the correct setup I will have much better luck.

I am not really sure why I am posting this because I know that many more people have it much worse off then I do. I only get 2 or 3 headaches a day and 2 out of the 3 only last about an hour average. I was just wondering how to manage family? I have a wife and 3 kids that also have to live with this, how do I not put the burden on them? They are great and jump at the chance to help me when I need it but I never thought something as small as a headaches could cause so much feeling of separation. I am signing up for another trial to see if that will help me out at all but first need the o2 to work because I can not take any triptan for 2 weeks before the study starts. 

Has anyone else tried any of the clinical trials with any good results? I figured I should try that route to help us all find some kind of treatment to better our lives.

That is about all I have to say, Thank you for taking the time to listen to me ramble on a little.

[CHfather]

F'T, some thoughts.

What's your total verapamil dosage?  960mg/day is sometimes needed for effectiveness.

Drink down some caffeine as you start on the O2.  Can be coffee, but an energy shot such as 5-Hour Energy is stronger and usually better.  Cover any open holes in the mask and be sure you have a snug fit.  Get deep breaths out and in.  Start with a strong breath out.  The idea is to get as much O2 into your lungs as possible and expel as much room air as possible.

Start the D3 regimen.  https://clusterbusters.org/forums/topic/1308-d3-regimen/

What form is your sumatriptan in:  pill, spray, injection?  Injection is the only one that works reliably for most people (sometimes the spray does). All that Motrin is really bad for you and almost certainly doesn't help.  I get the desire to do something in order to do something.

Some people find that melatonin at night helps, starting at about 9mg and working up.

What's the trial you're signing up for?  You might think about this: busting is demonstrably effective.  The drawback for most people is the same as yours for the trial -- having to quit the triptans.  The somewhat scary part about a trial is that you might end up with a placebo that doesn't help you at all.  With busting, at least you know you're using stuff that has been shown to work.  Busting with seeds is almost completely legal, easy to do, and has no psychedelic effects.  So I'd consider that ahead of joining the trial.  Read about busting in the numbered files in the ClusterBuster Files section.

Family is always an issue.  I've been amazed at how many people hide their CH from their families.  You are fortunate (as you know) to have that support; it's not always like that.  But of course the best solution is to do all the right things to be suffering less and less often.  I think the good people here can help you with that.

 

 

[spiny]

First I would like to thank you for signing up for a trial! Some who have tried to do one are already aged out of the parameters being set. Others just cannot do it. Those who do are thought of as Hero's by most of us. Me included!

Family: It is really hard on them. There isn't a lot that they can do to help except give you space, but I do have a couple of ideas. Some CHer's like a cool wash cloth during or after a hit. If you grab some caffeine on your way to the O2 to slam down, which is a really good idea BTW, perhaps someone can grab it and bring it to you. Even being able to do the smallest job to help you will please them. Let them know that you really appreciate their desire to help, but perhaps that you would like some help after the hit is over. Glass of water, washcloth, etc. Maybe let the kids know that you would love it if they could continue with whatever they were already doing while you are killing the pain? And likely you can let your wife know that kids noises do not add to your pain so she does not worry about keeping them quiet. But you need a place to be alone while you kill the hit.  Maybe that will give you a start. I think that most of us try to hide our pain from our families. We don't want them to know. Later, we find out that they would have been a lot better off if we had explained it to them. If you can employ their help at some point they will be happier and so will you.

Side note: I have a cat who is my O2 buddy. He always follows me to the O2 unless the dog gets in his way. He lies on the floor, not wanting pets or attention, just about a foot away to keep me company. It is nice to have him there to pet when I am doing my post hit breathing and no longer in pain.

It is great that you are getting your O2 set up properly. The CH mask is the best!!! Just make sure that you have a good seal to keep out ambient air. Or use the breathing tube instead of the mask. Many find that the best way. I can't tolerate the pressure on my face, so I only use the tube. You may find that you need a 'barb' to make the connection of the tubing to the tank. It has a screw on one end to screw into the regulator and a stepped up post on the other is the barb that you push the tubing onto. Just do not use any oil or grease on any connection!  That may require a trip to Lowes or an auto parts store. Just make sure that the threads are the correct number and pitch. I would take the regulator with me to get the part. Or the guy you ordered the mask from may still carry them. He supplied mine years ago.

I suggest that you read the O2 file in the Clusterbuster Files setcion of the board. Proper use is paramount!

Have you been able to read up on aids like caffeine? Taken at the very beginning of a hit they can reduce your pain and abort time. Many use Energy shots, Energy drinks, or coffee (hot or cold as you desire). They also can work to kill shadows too.

I don't know that Motrin helps, but the Trex injections do. You are limited to two in 24 hours though. Pills are too slow for CHers and are best given to Migrainers. The nasal spray is in the middle. Unfortunately they can increase the number of hits and also extend a cycle too. In addition, insurance will normally cover only 9- 12 injections per month.So, that kind of leaves you hanging for many of the hits. Injections can be split into three doses though and still be effective. So that does help.

I would strongly suggest that you read up on the D3 Regimen in the Clusterbuster Files board. It is just vitamins and works as an anti-inflammatory. Very easy to do and just requires a trip to Walmart or the drug store. It can reduce the severity of your hits and slow the ramp up time down. Both are good things. Some have gone PF on that alone!!

What does of Verapamil are you taking? Three times per day sounds like the short acting variety which is what you want. CHers can need very high doses - up to 900mg or a bit more. You will need to make sure that your Blood Pressure is in a safe range as Verap is a blood Pressure reducing med. All to often the dose prescribed is too low to help.

Keep reading and ask questions.

 

[FunTimes]

Thank you both for your feedback!

I currently take 720mg total Verapamil daily and would love to stop with the Motrin but I think it is a mental thing that I just need to overcome. I had my blood pressure tested and was told I can not up the Verapamil at this time. I am a big coffee drinker and at one point cut it out of my daily ritual all together thinking it may decrease the amount of headaches I get in a day, but that did not help at all. I will try the 5 hour energy trick to see if that helps at all.  I have given up drinking alcohol all together as that seems to be a trigger for me. I have read about the busting techniques here on this site and am interested in trying them all. I have printed out the D3 regimen to read over and think I can do that when I am in the study. The next study I was getting into is the one on the home page here for the Psilocybin in Connecticut. It is only about a 3 and a half hour drive from my house outside of Philadelphia. I am open to try anything as the clusters are non stop and I don't think anything can make it much worse. I know that I can get a placebo but after a set amount of time they usually bring you back in for the real thing. The only reason I join the studies is to try to find a solution that may one day be something we can all legally do to help with our issue. I would rather not take the triptans as I feel they will cause other issues in the long run. I currently take it in pill form, i have had injections in the past and they do work fast. The injections that I had were a compressed air type that shoot the medication into your leg, I have had about 6 of them that did not work (failed to fire off the medication). The insurance that  I have does not pay for anything until I meet a $6,000 deductible so I kind of shy away from getting them because they are about $200 a shot for me. 

The longest PF streak I have had in the last 4 years has been 5 days. the last 3 months have been hell with up to 5 hits a day. My family is very understanding  and they do what they can to help me out. My wife must be a saint, she will stand by with a box of tissues, bags of ice, water bottles and a hand full of pills for me. I just do not know how to repay her. I can only treat her to so many steak dinners!  My wife also found something about putting Frankincense oil on the roof of your mouth to about the attack. It does seem to help at times but have not seen that mentioned in anyone's bag of tricks yet. She just puts 2 drops on a small piece of paper towel or a tissue and puts it on my tongue then I hold it to the roof of my mouth for a minute and spit it back out. 

I do have better supplies coming in to get this oxygen set up the proper way and find it kind of odd that the doctors do not have a setup that fits our needs. I was in the hospital ER one night and I did not even get a aspirin to help me, so fed up with the lack of help I just got up and walked out only to get a bill from them for no help at all. 

All this crap is going on on top of dealing with every day life.. I just wanted to vent here a little as I know you all deal with the same if not worse.

Thank you for responding and I will be sure to read on and on and on. 

[Dallas Denny]

G'afternoon FunTime!

Looks like Spiny and Chf pretty much covered anything I would advise so I'll just say Welcome to the community but sorry you have the need to join us!!

Very cool that you've been accepted for the psilocybin trial!!  Was really bummed to learn that i was too old to participate.....guess no one told em 70 year olds have clusters too!!

Dallas Denny 

[CHfather]

Since you say you don't want to use triptans, this might not be very helpful, but as spiny says, with most autoinjectors you can break them open and get three, or at least two, effective shots from each injector.  See https://clusterbusters.org/forums/topic/2446-extending-imitrex/

You can also get your doc to prescribe vials of trex and syringes to create your own doses.  And you can often get lower prices (not low by any means, but lower) with coupons from sites like www.goodrx.com.

Do try the 5-Hour Energy.  It does help a lot of people.  And keep us informed about your O2, please.

Have never heard about the frankincense.  If you get a definitive feeling about its effectiveness, please let us know.

Some people have found that having their feet in a bathtub of very hot water during an attack will help to calm it.

Maybe you want to look over the list of triggers here, in case there might be something else that's bringing on so many attacks.  https://clusterbusters.org/forums/topic/4568-triggers/

Bless you a hundred times for your willingness to do the psilo trial. 

 

[spiny]

Fun times,

Like I said, participating in that study makes you one of our heros. We are more than thrilled that the Psilocybin Trials are actually happening now. It took a lot of hard work by a lot of people to get that ball rolling. Our Founder, Bob Wold being one of them pushing and working to make it happen.

I would definitely check on the D3. Like you said, it should not be prohibited during the trials. Fingers crossed as I don't know that for a fact.

I forgot about the hot water and I use it myself!!! Some have taken an ice cube and hold it on the roof of their mouth, as far back as you can on the CH side. Others have stuck their nose up to the AC vent in the car with it running full blast too. Both methods have helped people if used the right away. But the Energy Shot or caffeine has a better track record I think.

Yes, Your wife is a saint. It is very hard on her I am sure. I know that it is hard on my husband. Their hands are tied and they just want to throttle something to make it stop for you.

I have yet to find an ER that has been helpful. The last time I went, my Neuro was waiting for a call from them to give them instructions. The ER doctor informed me that while at the ER, I was HIS patient and proceeded to run a blood test for a stroke. I also walked out. My Neuro was furious. i was ballistic on top of the longest CH ever in my world. Too bad anger can't kill a hit!!! And, I got a bill too.

I really look forward to you getting your cluster mask! You will be amazed at how well it works with the proper setup and breathing technique.

Keep reading and asking questions!!

[MoxieGirl]

Hi FunTimes,

Sounds like you're getting some great advice already. The hardest thing about this board is racing other helpful people to be helpful first. Seriously awesome people here! 

I'd add a comment or two to Spiny's advice about how to help the family, and how to help the family to help. 

I got into a relationship shortly after my clusters started, and although the "relationship" only lasted a year, we are now (10 years on) the best of friends. We are housemates, and she has MND (aka ALS), and I'm now the one supporting her, but I digress. 

She always found it difficult to watch me go through the pain and feeling totally helpless, and my heart broke for her. What we figured out was that after the attack, I desperately needed a glass (or 3) of cold water and a blanket. During the attack, I just needed to be left alone. So she soon learned to just leave me be during an attack, and not to worry. To get on with whatever she was doing. But, she'd always have water and blanket ready for me for when the attack finished. I know it feels like your abandoning the person in pain to walk out of the room and close the door, but it honestly helps them relax a bit and not worry about what the person is seeing or feeling. Sometimes, leaving the person to be alone is the best treatment. 

I have never really figured out who has it worse. The sufferer, or the person that watches them suffer. 

But know this, talking with people that understand helps. Your family is more than welcome to come on here and join in with the conversations, or start their own. And also know there are ways to make things better, many ways. Doctors don't always know the ways, and we don't always know them all. But you'll struggle to get bad advice here. At my worst, I was having up to 5 attacks a day, every 2-3 days for a more than a year. But I found the answers here, and I barely have any attacks now. 

Hang in there.

MG

[FunTimes]

Thank you to all the advice, I am now on day 3 with NO Sumatriptan, the first day sucked but things seem to be getting better. After getting the correct o2 regulator and the better mask for it the oxygen is doing the trick so far. My wife and I will be driving up to Connecticut this week for more details on the study they are doing with the Psilocybin, I will let you know how that turns out. Not out of the woods yet but I think I can see it coming. 

 

Thank you all for your replies and advice. 

[spiny]

Thank you Fun T. Be safe.

That O2 is a real miracle, isn't it?