FunTimes

When I get that funny feeling the first thing I will do when I am out is down a 5hr energy drink. If I can catch it fast enough it will sometimes kill the attack off if I can keep calm enough.

Curious to know how others felt weaning off of verapamil. I dont know that is was helping much so I started to wean myself off from 480 a day and now down to not taking it at all. each time i stepped it down I think I got a few extra clusters a day but they leveled out fast enough. Now that I do not take any at all I am getting up around 6 clusters a day. This has only been the last 2 days, I took my last verapamill on Saturday and was fine without it for about 4 days, when I say fine that is 1 or 2 clusters a day. I do not want to take any more pills then I need to and I am on the D3 so that alone is enough to swallow in a day. the fact that I am now getting hit more often could be the last of the verap is now out of my system. It could also be "just because". Has anyone else noticed any change when weaning off like this?

I do not know anything about this but a quick search pulled this up on google. http://www.neurologytimes.com/headache-and-migraine/treating-menstrual-migraines

Tyelonol may help a little, some chew on ginger candy, drink 5hr energy drinks, have strong coffee. I sometimes will get some relief by taking a benadryl. Best of luck to you and your son.

If you go to the top of this page and click on the word brows it will open a page that lists different pages people post questions on. if you click on the words Theory and Implementation it will open up that page witch will have a bunch of different headers that represent others posts. you can scroll down and click on anything that will interest you or you can click on the word create on the top right hand side of that page and start your own thread. If you create your own thread by clicking the create button it will also be listed among the others you saw after clicking theory and implementation and others will then be able to communicate to you within that posting. The private part is like CHFather has told you, it is private to members of this site and people who do not log into the site can and will not be able to read, see or answer anything. I hope this helps you, the more you click on things the better you will get the hang of it.

We have all been there, your family will offer up advice only because they do not understand and only want to help. I got the same thing at first. Now they just kind of let me go do my oxygen and wish me luck. Do you have a oxygen setup? if not that would be the first thing I would look into getting. I also use the 5hr drinks to try and hold off the pain and they sometimes can kill a headache all together f I catch it fast enough but that has only happened a few times. The oxygen is the best abortive I have and can clear out my head in 5 minutes on a good day. Not any one thing works 100% of the time but having a few tricks in your bag can make life a little better. 5hr drinks, oxygen, D3, ice packs and the list goes on.. mix them all up and find a combo that works best for you. Just as you figure it all out everything will change on you, That is the fun of it all. Make sure you read up as much as you can here and ask questions Good luck!

3800 I would say get on the D3 regimen and add Benadryl during the day and Melatonin at bed time. When I am being hit at night I will sometimes sleep in a recliner keeping my head up above the rest of my body. This will sometimes get me 4 or 5 hours of solid sleep before being woken up with a attack. as far as the Melatonin I take up to 20-30 mg at bed time and this also helps but everyone is different so you might want to start out lower and work your way up to a dose that works best for you. If you add Benadryl to the D3 I would not take that at night with the Melatonin until you know how your body is going to handle everything.

I use the 5hr energy drinks and keep them in the car, at work, at home and in my pocket. Small easy to carry around and they do the trick for me. I do not keep them cold and drink them at room temp. The first feeling I get I can sometimes drink one and push the cluster off totally. If you used 1/4th of your tank it sounds like you have a E size tank. I would ask for about 4 more of them and at least 2 M or M60 size tanks. My oxygen company is not the best at keeping track of how many tanks I have or they just dont care so if I order 4 tanks and only have 3 to return they still give me the 4 tanks. this is a good way to build up the stock pile you will need when the shit hits the fan!

Welcome and goot to hear you found some relief.. Let us know if you have any questions and what else is working for you.

I have not gone pain free with the D3 but I do notice that I can abort my clusters in less time with oxygen that I could before. It can not hurt to give it a try but be patient, it can take up to a week or so before you notice any change.

I sometimes get this but it is due to the verapamil. I have been on the D3 regime for about 4 months and had no side effects. I am not saying that his pain is not a reaction to the D3, im just letting you know what causes that type of discomfort for me. I would have the blood work done just to be sure.

That is great!! I am setting up to have a big cook out this weekend, My son told me he has my back if I can not make it through the day and get hit with a CH. The reason I and I would think most people visit this site is for just this.. A little reassurance goes a long way Thanks

Hey everyone, Just hitting a bad bump in the road here and feeling kind of out of it a little. How do you cope with all the bad thoughts that run through your head? I know im not alone with feeling this way. We all get down from time to time but what are some good ways to get the positive thoughts back in my head? I try not to show it on the outside but I am all messed up on the inside..

The first time I had O2 was in a hospital with a crap mask and who knows what flow rate. The mask let in room air on the sides and they had it strapped to my face. When I told them that my cluster was getting worse they moved the mask from my face and put it over my ear, I guess so I could get more room air? Well I broke the mask off and that was the end of my O2 until I found this site. I read all about the ways others here use it and now have the correct setup and mask. I found it was harder for me to get a oxygen company to deliver it to my house then it was for a doctor to give me a script for it. After a bunch of weeks calling and driving to O2 distributors and yelling and fighting with them I finally have a company that will deliver tanks to me house the next day. I do not use insurance for it because it would end up being about twice the price so I just pay for it out of pocket. Getting off the triptans was a long hard painful weekend but it was well worth it. I went from taking 3-4 shots and or pills to maybe one a month if I am getting hit bad for several days. I just know in the back of my mind that I am better off without them in the long run. I am not saying never take a triptan for a abortive because I have been crushed for 3 hours with a kip 10 before and know how that feels, I am just saying the O2 has aborted just as fast as a injectable and faster then the many pills I have taken.

Any updates on who will be speaking and or attending this years conference?

I am sure someone with more knowledge then I have will post here soon but from what I have read on this site you crush the seeds up and soak them in water for an hour or 2, strain the slurry out with a coffee filter and drink the water. Some have just drank it all without the filtering but it can sometimes cause a nauseous feeling. People do use them for maintenance between cycles also depending on the person I think the starting dose is 50 to 80 seeds but I would read up on that a little more. I am also thinking about trying the seeds and have only read about it so far so I have no experience with seeds. Also stay away from taking any triptans and stay on the 5 day schedule between doses.

I order all my regulators off Amazon also. the M size tank should be a "cga540". As far as keeping your mask clean I use a crown royal bag to keep my mask in when it is not in use, that is a cloth breathable bag that keeps the dust off when it is in the car or sitting in my room. I have about 4 masks spread around from work the car and my house. I have little alcohol wipes that you would find in a medical kit that I use to wipe the mask out with from time to time. I also will take the mask apart and clean it in the sink. When you clean it in the sink make sure you dry it out 100% so you don't have any issues with a stuck valve or any moist area that bacteria would like to grow in.

Thank you for all your help this last year. I appreciate your help to everyone on this site, Hope things go well for you and you will be back soon.

Looking forward the the next post. If it is easy enough to get the certification why not? It is just another O2 outlet and maybe a cool new hobby to try out.

Mel You can also look into making this to hold you over. It is the redneck bag. https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

I found that getting the script for the o2 from the doctor was only half the battle. The o2 company's around me either wanted charge me a tun of money per tanks monthly rental or said they do not service Cluster headache patients. I finally found one place that I could talk to and they worked with me, we found that it would cost me less money to pay out of pocket for O2 then it would if insurance paid for it. I get 2 m60 tanks filled 3 times a month for 90 bucks and I have 4 E tanks that cost 15 each fill. they come to my house and swap the tanks out. It took about a month of calling and fighting with different company's in my area but I just googled the list of places and started from the top. I drove and picked up my own tanks from a few places and tried to swap them out the next day and they upped the price because I was causing to much paperwork, I had one place that would not answer the phone when I called them after a few tank refills. You will come up against all kinds of things but if you just keep calling or have someone you know at a doctors office call for and with you you will fins someone that will work with you.

1000 to 2400 mg a day of the fish oil is what I think is recommended.

Well I hope you feel better after getting that off your mind. We have all felt like this and gone through the same type thing in the past. I would say read up on Batches vitamin D3 regime, this helped me cut the pain level way down and also cut a few attacks out per day. I am chronic so I never really get a full pain free day. you can also read up on how to get welders oxygen setup and start aborting with the o2 to help get you off triptans and other busting blocking meds. I would recommend reading everything you can on this site and dont be afraid to ask questions 9 times out of 10 someone else has dealt with what you are going through. welcome aboard, you are in good hands here.

Mal I also had issues with doctors and getting oxygen. I had more of a issue of getting a supplier of the O2 then I did with the doctors writing me a script. I have had places flat out tell me NO they dont supply to cluster headache people. I did get my prescription and started to call the top of the medical supply places in my area telling them I will pay for it out of pocket and finally landed with one. It took about 2 weeks and I found out that it is less money for you to pay out of pocket for the o2 for me then it is to use insurance and one less thing to deal with. I do not care about the regulator and mask they o2 place sent me to use, the mask is way to small and lets air in and the regulator is at a lower flow rate. I order my o2 mask off of the clusterheadache site and the regulators off amazon. This site is a great place to be. Look around for a few hours and ask a tun of questions. use the search feature at the top and I am sure you will find information from someone who has tried it.

I have found that it was much cheaper for me to pay for my oxygen out of pocket then using insurance. call the oxygen supplyer and convince them it will be better for both you and them if they give you a few tanks. I have 3 M tanks and about 12 E tanks that I can rotate out to get filled and I manage it so I never run low enough to run out over a weekend. I am lucky with my place as they will deliver the next day as long as I call it in by 5pm the day before. I did have issues with them when I first started using them but after calling and talking with just about everyone I could and meeting and dealing with the driver things go much better now. I ordered the cluster mask from the link above and that is 100 x's better for me and I went on amazon and ordered my own regulators for both the M and E tanks. I keep extra everything just in case i break a mask or crack a hose. I keep tanks in my house, garage, car and work. It is kind of a pain in the neck lugging this stuff all over but it is better then a pain the the side of your head.. Good luck and let us know how you do.