FunTimes

I will have dreams that I am getting a cluster and start on my oxygen. It will then get so bad that I think I am going to get a 5hr energy drink and that is when I wake up and run for the real oxygen tank. It kind of sucks when that happens and my wife can sometimes see it all happening if she is in the room doing something. I told her to punch me or something the next time see sees this. I also take 20gm of melatonin almost every night.

EggMan You should look into the oxygen, it can abort your attack in as little as 5 minutes once you get the hang of it and you are not taking any sumatriptan. I was in the same boat as you at one time maxing out on all flavors of sumatriptan, the shots and in pill form. Not only did then make me feel all drained and tiered they cost me a lot of money. I had a struggle at first getting a good vendor to work with getting oxygen but now that I found one things are much better for me. I still keep the triptans for when the shit hits the fan but that is maybe only once every other month if even that. At this point I take 120mg of verapamil once a day do the D3 vitamins and bust on a set schedule. I keep a 5hr energy drink or something like that with me at all times and drink that on my way to the oxygen tank to kill off any attacks I have now. I still get one or 2 a day but that is much better then the 6 to 10 I was up to only fighting with triptans. Dont get me wrong, Sumatriptan does work and it never to far out of reach for me but the oxygen is better for your body and does not cause any rebound attacks like the triptans can sometimes do.

That is a calcitonin gene-related peptide receptor antagonists for the preventive treatment of migraine, I was going to do a clinical trial for clusters in my area but it was canceled. I think I remember reading that it looked promising for episodic but not so much for chronic clusters. I am sure someone else will chime in with better information for you.

I use Stacker2 energy shots from Walmart and other drug stores. It runs about $1.50 for 2 bottles. It seems to do the trick most of the time but I do feel that the real 5hr energy drink works better, or more consistent I should say. But at half the price worst case I drink 2 of them. I can kill off a cluster in 5 minutes if I catch it fast enough and do the shot on my way to the O2 tank. I have also drank cold frappuccino made by Starbucks and other cold coffee drinks that are similar. The key for me is to catch it early and hit it hard.

I use Melatonin at 20mg every night. I started out at 5 and worked my way up to 20. I also find it does help with overnight hits and when things get really bad I add Benadryl at bed time. I take it all at once and never thought of splitting it up a few hours before I go to bed and then just before I lay down. It does help

Theory and implantation and share your busting stories is a good place to poke around for new ideas. You will find info on all kinds of alternate treatments. Ask whatever questions you have on that part of this site and people will answer you as it is a closed part of the board only open to members.

Some have tried microdosing but I have not read many posts that it works as well as taking a larger dose every 5 days. The standard practice is taking at least 1 gram every 5 days for 3 doses. Some take more and do more then the 5 doses until it busts the cycle.

I did this as a clinical trial in my area. I lasted just about 2 years and had it removed. It may have helped with a few clusters but I do not think my placement was correct so it had poor connectivity. Now I am left with numbness feeling in my upper lip, roof of my mouth and nostril on that side of my face. Lost a lot of my sense of smell and taste. Would I try it again? Probably if I was in the same place mentally I was when I signed up for the study just before I found this site. BOF.. No barcode but you do get a little card to get you through a meddle detector

I keep a m60 in my car a lot of the time. I built a little box that it sits in with 2 E tanks. You can just strap them to a seat back to make sure they do not fall over and break the regulator.

I will sometimes feel a itch or twitch and know the shit is about to hit the fan. That is when I start drinking down the 5hr drink and looking for the oxygen tank

e3r I have not changed any diet for verap. I eat like crap most of the time and smoke a pack of cigars a day. I can not drink beer anymore because that is a trigger but I can sometimes pull off a whiskey drinking day. Interesting enough, when I tie a load on with Whiskey I tend to get 3 days pain free after that.

The oxygen concentrators do not put out enough pure oxygen to help abort your attacks. Concentrators will put out about 5 or 6 lpm max, you need up to 25lpm with a larger reservoir bag. You can make arrangements to have oxygen delivered to your hotel or you can pick it up at your destination but it will take a lot of calling around to make sure you get what you need for your vacation. I went on a cruise last year and was able to have o2 tanks delivered to my room on the ship. I had to tell them how many tanks I wanted and it was use it or lose it, no refund for unused tanks. You will need a prescription to show or send to the company you use at the destination you are going to so you might want to make a few copies to keep on hand.

I was on Verapamil 240mg 3 times a day but it was slow release and made my feet look like balloons. I have changed over to the fast release version and worked my way down to 120 once a day. I read on here that the fast acting works better for most so I figured I would give it a try so I had to change doctors to one who knew what I was looking for and what do you know.. people here really do know what they are talking about. This site is great. you will find all kinds of new information here that will help your life go just a little better every day.

I would go find a good headache specialist to confirm you have cluster headaches. Clusters do not normally linger for days at a time, they come on in a instant and it is the same time of day every day. They can last a few months or Chronic (all year round). they go from zero to full blast in 5 to 10 minutes if untreated. Oxygen is used to abort the cluster and is taken at a high flow rate with a non rebreather mask to eliminate all outside air. 25lps regulator and the cluster mask are key to getting the oxygen to work. 5hr or other energy drinks are used to help slow down the attack so you can get to your oxygen tank and can some times abort the clusters. The D3 regimen is a few over the counter vitamins to get your vitamin d levels up into a normal range. Search around the site for a day or so and read up an as much as you can and ask questions as needed. This place is full of people willing to help you out.

what is the dose of the Verap that your taking now? Alot of people on this site have tried and need very large doses for any relief. Also have you tried oxygen to abort your attacks? High flow oxygen at 25lps with the proper non re-breather mask know as the cluster mask can abort a cluster in as little as 5 minutes. if you add a 5hr energy drink to the first sign of pain you can maybe get off the other meds that you are using to abort.

Welcome to the party! Sorry you have to be here. A few things you will want to look into. Vitamin D3 posted on this site by Batch, this has helped alot of our members here and is just vitamines you can get from a local drug store like CVS Rite aid or Walmart Oxygen to abort your attacks with a high flow regulator and the cluster mask. This will help you get off some other abortive medications you may take. 5hr energy drinks can help hols a attack off until you make it to your oxygen and can also sometimes stop a cluster from developing into a full attack. Melatonin at bed time can help you sleep a little better and will help your overall mood from lack of sleep. and look on the members only boards, Theroy and busting stories, they will give you some ideas on how others use alternative methods to keep cycles from starting. Lots to read here and ask all the questions you have someone else probably already had that same issue and can tell you what helped them

Do you have oxygen to abort your clusters with? Hi flow oxygen at 25 lps can abort a cluster in 5 to 10 minutes without causing any rebound headaches. I will down a 5hr energy drink and head to the O2 the first sign of a headache coming on.

I take all of the recommended suppliments for the D3 and sometimes add Benadryl if things flare up a little. I also take melatonin before I go to sleep at night. I am chronic so I do not get many days without getting a hit but I can tell you things were much worse before I added the D3 regimen and started busting.

Thanks for the info. I will remember this for the next time.

At one point I would get so angry I could feel the pressure building in my head and making everything much worse. I have tried to say the hell with it and go for the ride and not be so mad about it and things seem to be much less painful.

Well the skin pain is almost 100% gone now. I have a feeling it has something to do with the a Pathway CH1 study I did a few years ago, now called Pulsante therapy. I think it messed with my nerves and causes some strange things to happen with my clusters and all the nerves in that area.

Has anyone had a skin pain feeling in the same area as your cluster pain? Not any headache feeling at all just the skin. Feels like road rash and my eye feels all hard. It started yesterday and its non stop.

I was looking for the same type thing but just like everything else cluster related. It almost, kind of or is close to but does not work 100%

Mit I think it is different for every person. I was taking sumatriptan in pill form 3 or 4 times a day mixing in at least 2 auto injectors on alot of days at one point a few years ago and I think that DID give me rebound attacks. If you are not taking that much per day I think you will be fine for the 3 days. BUT that could be different for you. If you are splitting injections or taking it only one time a day you should be fine short term, I think it is when you take a lot over a longer time they will backfire. If you can try the 5hr energy drinks they can sometimes kill off a attack for me if I catch it fast enough and they do not keep me awake at all.

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