mit12

Pebblesthecorigi, Whine and Champagne guaranteed are triggers for me, within minutes of drinking either one I am hit hard. Beer is ok for me as long as I stay away from Lagers. The beast is strange.

ZGreek, I agree with ThatHurtsMyHead. When I dose with seeds I drink it just before i go to sleep at night. For me I do not feel the upset stomach or any other side effects this way. With MM I can not take it before bed, if I do I can not sleep.

ThatHurtsMyHead, How often do you maintenance dose? I am so afraid that this will happen to me just like every other drug that seemed to work and stopped! For now I am using Seeds and MM changing up every maintenance dose.

Elpo, sorry to hear this. Try using different breathing techniques, like taking a deep breath and hold it for 10 or 15 seconds exhale hard and deep breathand hold it again. This works beat for me. Keep trying until you find a flow rate and breathing technique that works for you. Good luck.

John, I have to agree with CHfather. I use a 60cf welding oxygen bottle with a 25lpm medical regulator. My regulator does not get cold nor does the top of my bottle. I am not trying to argue but I would make sure that your supplier is infact giving you100% 02.

Update, First thing, if you are renting an oxygen Bottle from Airgas they will have an $11.00 a month Hazmat charge added to your bill. Call them and tell them that you will not pay for a Hazmat charge for an oxygen bottle that is your possison. They try and shove this charge down your throat but they have no right to charge you for Hazmat on a bottle in your possesion. Second. The rental charge is $.85 per day $26 per month.

Well done CHfather.

Anita, I have used O2 to stop shadows. I use low flow may be 8lpm and breath normal until they go away. By doing this I have been able to stretch the time between attacks. I think it is best to say that not all CH are the same. Experiment with breathing techniques, what works best for me is about 10 fast deep breaths with hard exhale at 25lpm and I turn down the flow to 10lpm and take deep breath and hold it until the ag is almost full and exhale hard and take a deep breath and repete intil the CH is gone. Remember to keep breathing O2 at a normal breathing rate for about the same duration that it took to abort the attack.

Pro2see Glad you found this place, there are so many good people on here that can help. Using pen and paper to track your attacks along with what you eat every day will get you on track with triggers. Key things for me is sleep times and duration. I do have food triggers, shrimp is almost an immiadate attack same goes with champagne. If I have a little headache I need to stay away from cheese, Chinese food and all alcohol. Perfumes and other smells can trigger an instant attack. If you dont have a good pair of polorized sun glasses get a pair. Busting along with the D3 progeam and Oxygen has kept me off all prescription meds.

Anita, You are truly amazing. For me I can not answer a question while in an attack, so being present and willing is great incase he asks for something.

Shrimp, some perfumes, any change in sleep patterns especially if I am startled awake. I do great while under stress but as soon as it goes away I am hit. Amoxicillin. Any time I get sick I get hits.

It is hard to imagine that after an 18 hour migraine I am happy! Not one cluster event.

Tonic, I was misdiagnosed for 20 years. NOT ALL CH are the same! Keep pushing his doctor! Go to another doctor to get second opinion. My CH follow the normal guidelines of migraines mostly because I get both at the same time. Question for you, does your son have a bad headache (migraine) which can last all day in which he gets multable real bad hits for a 30 to 90 minute durations during the headache?

TLDtheotherguy I am sorry to hear about your situation with your job. Having CH is bad enough without worrying about loosing your job. I was lucky I worked for the same company for 33 years. I grew up with my bosses from 18 years old until I retired. They seen me at working with kidney stones, broken bones etc. but when I had CH I was done. you came to the wright place with Clusterbusters, there are a lot of great people that are willing to help in any way they can. You are not alone. Keep an open mind about treatments that sound crazy, they work! Good luck.

When I went to my headache doc over 20 years ago he gave me a little oxygen mask and had me breath it for 15 minutes. He told me to lay down and relax and breath. It did nothing! Not to mention trying to lay down with a CH is impossible. Based on that experience both he and I thought that oxygen did not work for me. CHfather pushed me to give it a try with high flow and proper mask. It worked! Although it was nice to see the CH talked about on national TV, they need to show the correct way to treat the beast.

For me taking triptans more than 3 days in a row caused rebound headaches. If my insurance would have covered more zomig I would have been good but 36 each over 90 days was not enough. Now that is after 20 plus years of taking them. I used Prednisone to brake the cycle so I could get the triptans out of my system. Diltiazem was my wonder drug and it stopped working after about 10 years. Busting has been the best thing I have ever done followed closly by High flow O2. Good luck.

Kuhnrs I was one who thought o2 did not work for me after CHfather pushed my to try it again with high flow and proper mask it worked and it works fast. If your doctor will not prescribe o2 go to a welding supply and get an oxygen bottle and purchase a regulator and mask. It is not very expensive but it is worth it's weight in gold.

I was thinking about breathing techniques for O2 the other day and decided to try something different. Using the theory of O2 transferring into the blood stream I figured that having the oxygen in the lungs longer would help the saturation process. During my last attack I tryed a different breathing technique and it seemed to work fast. I started at 25lpm for five deep fast breaths on the last breath reduced the lpm to 10 and held my breath until the bag filled up exhaled hard and took a deep breath and held it until the bag filled repeating this until headache was gone. It took less than 5 minutes to abort the headache. After the headache was gone I continued normal breathing at 8lpm for a few minutes.

Bob, Prayers sent.

The past few days I have been getting shadows so I tried hitting the O2. For me It seems to stop the shadows with in 5 deep breaths.

Great idea! I made a spreadsheet that tracked how many per day, what time they started and what meds I used to treat them. Doc loved the information, but felt bad that I was having on average 3 to 5 days a week with attacks. The only way I was able to work was that 95% of my attacks started at 3:00pm with a migraine and within 1 to 1 1/2 hours the cluster events would start and by then I would be home. To have 1 week shy of 6 months pain free thanks to Clusterbusters is a life saving experience.

Criticalmass, After reading your post again I wanted to tell you that family members that do not live with you and your wife will not understand, they do not see her rolling on the ground screaming at God to kill her etc. Now that you found Clusterbusters you are not alone. Your comment about PTSD is accurate, I have my black bag that has my Zomig in it and I use to freak out if I left home without it.

PainInTheEye Do you get migraines with cluster events or do you get them separately? I have found that when I am struck with clusters alone my hits are 1 1/2 hour hits with about 20 to 30 minutes between hits. When I have migraine with cluster events the hits are longer with very little gap between events.

Criticalmass, Welcome to the family. Sorry to hear this, you are at the right place. There are a lot of knowledgeable people on this site that can and will help you. Please read up on the D3 program. Is your oxygen system a high flow system 15lpm or greater with a non rebreather mask? Oxygen did not work for either until I got a high flow regulator and the non rebreather mask. Hang in there.

I woke up at 2:00 this morning with an CH attack, I used my oxygen setup and a aborted the headache! started at 25lpm and reduced it to 8lpm after the headache went away for the post headache time. When my doctor tried oxygen on my headache it did not work, high flow did the trick. Thanks CHfather for pushing me into trying oxygen again with the proper setup.