FunTimes

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.

Found it! https://www.amazon.com/gp/product/B00BXRBJG8/ref=oh_aui_search_asin_title?ie=UTF8&psc=1

Here is one that goes up to 15LPM, I can not find the one that will go to 25LPM https://www.amazon.com/Chad-Brass-Core-Oxygen-Regulator/dp/B00EU6NA7K/ref=sr_1_13?ie=UTF8&qid=1549462455&sr=8-13&keywords=CGA540+oxygen+regulator+25LPM

I have also had that feeling of way to many 5hr drinks in a day and tried to mix in a redbull, frappuccino or other type of cold coffee. This did help with that heartburn feeling going away. I also started to drink the ginger and chew on a little of the raw root and things seem to be going well with that. The 5hr shots do work well along with the oxygen and do not keep me up even if I take one at 3am.

Sounds like they are on the way back so like Freud said, maybe try busting this before it starts. If you are not ready for that yet I would keep your strong caffeine drinks or energy shots close by and hope for the best. You could also try drinking ginger tea of chewing on some ginger root. I have just started doing this this week and it seems to be helping a little but it is to soon to tell for me.

I sometimes need the cold to help kill off the pain and use ice packs on the cluster side of my head. Other times I am freezing cold and try to cover up to keep warm. I never know what one I will be dealing with and it all adds to the fun. I can melt a ice pack holding in the same spot on the side of my head and not feel the cold on my head or hand. I sometimes realize this when the pain is almost gone and still think it is kind of odd. I can not hold a ice cube in my hand in the same spot in my hand until it melts away to nothing when I do not have a cluster.

I started my day off with 20oz of Honey Ginger Tea store bought and then had a feeling of a cluster come on about 135pm so I took a nickle size piece of fresh ginger and ate it. I was doing my O2 at 144pm but the cluster was gone in about 10 minutes. 10 to 20 minutes have been the average abort times for me the last week or so, sometimes with a 5hr drink and others without. This was just the first time I ever had any ginger so I will keep notes on if anything gets better or worse.

A friend of mine found me fresh ginger from a Korean supermarket over the weekend so I will be trying it today. I guess I will just slice some off and chew it up throughout the day?

I have had the same experience as Dan has had. I have had the sumatriptan tablets because the injections are out of my price range. I would take them early and often just to try to stay in front of the pain. I have chewed them up to try to speed up the relief but that did not help and not the best taste. I would see what you can do about getting a oxygen setup either from a doctor prescription or get a welding setup and a cluster mask from here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit you can read all about the welding setup on this site and I am sure someone from your country can help you track down other abortive medications. Batch is someone you will want to reach out to and ask about the D3 regimen, it is a handfull of over the counter vitamins that you can take that will help reduce the amount of clusters you get. You can add Melatonin to this at night to help you sleep and benadryl 3 times a day in case you have a underlying allergy that you are not aware of. you also have some busting options that are talked about on other parts of this site you may want to look into. You are in a good place and have a lot of reading to do and dont forget to ask questions people from all over the world are on here and willing to help.