spiny

Ed, If you go to the closed boards (Theory and Implementation or Share Your Busting Stories) you will find a lot of info regarding your question. And likely will get more responses.

You are most welcome! I was in the same boat a few years ago - alone with CH. We do have an Annual Conference for CHer's too! This year it is in Austin, Texas in September. I look forward to hearing more from you.

Morning Edache! Welcome. Glad that you found us, but sorry that you too suffer. There is a ton of support for you here. This group understands. I see that you have already poured over at least one old thread so I bet that you are perusing others too. It would be nice if you started your own thread and let us know a bit more. That way we would have more to go on to help you! There are several things that can be tried to improve your situation and many great aids for fighting this condition. 3 years chronic is very tough. Especially if you feel alone. Don't give up. Never give up. You are not alone. Hugs!!!!! spiny

No doubt easier access would be too logical!!! Headache on the Hill is an annual trip to DC to get medical O2 added to Medicare for CH among other things. CHers meet with Congressmen and women to raise awareness and improve our treatment. This year will be the fourth trip I think and we owe many thanks to those who go. Participation is open to all and is encouraged. Look under Advocacy board for more info. They should be planning the next trip (in the spring of 17) later this year.

You can purchase a tank at most welding supply shops. If you buy the tank, any O2 welding supplier will fill it for you. If you rent one, you must use that chain of stores. As for the O2: The same O2 is supplied to medical as to welding is my understanding. After all, we don't want a 20 story building coming down due to contaminated O2 in the weld! The tanks however are different. It is a personal decision for each of us. Personally, welding O2 is all I have ever used. I look forward to reading what you find out about the concentrator. spiny

That is fantastic Adam!! For some the D3 is magic. Yes, do up the calcium and add the K2. What about Omega 3? I am short on research time at the moment and can't check out the current info, but it was originally part of the regimen. There are many of us who stay on the D3 year round because it is good for you even without CH. I would avoid that alcohol trigger till I had two weeks PF under my belt. Why annoy the beast when you are trying to kill it, right? ATB

Hi bd! CHF has given you some great information above. I will only add that usually Pred is given as a bridging med. It provides relief for a week or two until your other medicine, say verapamil, kicks in. It is not a long time solution. As you taper down from the starting high dose, CH will return if your other med is not yet controlling your CH. Or if there is no other med prescribed. Those are not rebound headaches. Have you been prescribed anything else to go with the Pred? While I will not comment on 'panic attacks' I can say that Pred makes some people tense and nervous. And hungry and grumpy! Depends on the person and the dose.

I used to have a friend who would cope just great thru tons of stress. Then, when the event passed would be incapacitated major migraines. She called them stress relief migraines because that is how she experienced them. Personally, I recently went thru major stress. Made it thru 2 weeks just fine. Then, the day after I returned home and some of the load lifted, the big event hit: My first daytime hits combined with my high cycle nighttime hits. It really was hard. None of my normal methods of pain relief were touching it. I even went to the doc and begged for some trex pills just to get some relief. Kinda of a major response on my part!! Always refused trex. But, the pillls gave just enough relief that I could catch a break for a few hours a day - not PF by any means, but able to cope. This lasted 5 days and nights. So, I do agree that stress is a kicker for CH. Not really a cause for me, but certainly a big kick in the wrong direction. While it cannot be avoided totally for me, I do try to minimize my response to it and I do believe that helps. I am really glad that you are in a better place Purp.

All wonderful news! And getting that cuff is a great idea. I too have low bp and used a cuff with bp measurements to convince my neuro that anymore verapamil was a bad idea for me. Some folks can take 600+ mg of it and be fine. Others cannot. You are a rock star for all the work that you have done. Just think, you have accomplished more for your husband in a few weeks than past doctors ever did. How cool is that??

Hi Debs. Read, read, and read some more. The D3 Regimen is easy to start and can have some fantastic results. Vitamins - who would have thought. Using your O2 properly is the only way to make it work for most people. Grab some caffeine at the first sign of a hit. If you currently have O2 and have gotten an idea of how to do it properly hit it hard as soon as you chug some energy drink or coffee. Both should be a big help. O2 kills one hit. It does not prevent the next regularly scheduled attack. But, it will give you some rest and PF time in between. Ginger can help eliminate 'shadows'. Some use tea. I use Ginger Chews as they are very portable and fit in a pocket. Melatonin at night also helps a lot of people. Start out with 3-9mg and work up till it helps. 20mg is my magic number. ATB

Well, that is certainly something worth crowing about!!! Wonderful news Chris. If it weren't so early, I would do my infamous Happy Dance for you as we can't make marques of smiley's.

Hi Adam and welcome! What you describe is what many of us encounter before we get a correct diagnoses. Lets see: Sinusitis, allergies, abscessed teeth, cervical misalignment and migraines to name some. The above can and do result in lost teeth, sinus surgery, and lots of chiropractors.Then, we wind up with the wrong meds (Imitrex pills) and others that do not work. A headache specialist is your best bet for a competent doctor. This site is the best, in my book, for actually helping people. You will learn a lot about what really helps and what is rubbish. You will likely find that D3 Regimen and O2 are your new best friends. Keep reading and asking questions!

As a 'sit on the floor rocker' I can attest to the look at the floor bit. When caught out and not able to do it that way, the hits take longer to abort. Thanks again for putting up the videos CHF.

Hi Chris, I am only familiar with the CH mask. I use the breathing tube, not the mask. There is no resistance when exhaling, nor should there be. Regular masks from other suppliers are different due to the holes if I remember correctly. As in tape one hole and close the other with your finger. Remove finger to exhale. The CH mask works without this extra step as I re-call. The CH bag should empty or almost empty when you inhale and fill while you hold and then exhale. If it is staying inflated, your flow is too high. Turn it down until it just fills while you exhale. If you are having to wait for it to fill to inhale, turn the flow up a bit. Exhale with force for starters and hyperventilate for the first few minutes until the pain drops. Continue with rapid breathing (ie slow down a bit) until the pain is gone. Then set your flow to provide enough for normal breathing. Breath normally for the next 5 or so minutes - post hit keep doing it time. I find this to be the boring part now and cruise the PC for that five minutes or so. The post hit part is very important. Without it, your hit will likely return in a few minutes. I have read where people say it did not work because they got hit again an hour or two later. Point is that it will not stop your normally scheduled next hit most of the time. It gives you PF time until your next normal hit time which beats the heck out of very little PF time. Pre-O2 I got 4, 2.25 hour long hits per night. That meant 15 minutes PF between hits. After I started O2 I killed the hit in 15 minutes or so, then back to bed about 15 minutes later to get 2 hours PF. Beat the hell out of what I had going on before. You will get the hang of it right quick! How much the suma was a problem I do not know. Fortunately I have avoided the triptans. ATB!!!

Hi Honcho. I have not considered this. Are you referring to fluoride from toothpaste, city water supply or naturally occurring fluoride in well water?

I took it for several years at 240mg/day. The short acting is more effective than the extended release form for most CHers. Keep an eye on your blood pressure as it lowers it (ergo tired). My bp is normally low so I could not up the dose when it no longer worked. Good luck!

We have missed you Sierra! When we get PF we all want to just put it behind us I think. We finally feel like normal people and we like it!! No need to apologize for that. I am sorry to read about your current situation. Fingers crossed that relief is on the way. I know that you are aware of all the tricks used such as caffeine and the D3 Regimen, so I won't go into that. I look forward to reading that you are back on the PF train soon. Hugs!!

I just ordered a CH mask from our sister site and it was overnighted to me. So, it likely would be faster than Amazon for sure.You could try calling today, but Monday should be a sure bet. It ran about $30.00 total if I recall correctly. Welcome aboard DNM. Lots of great info here and kind folks to share it. Clusterbuster Files are loaded with good reading. At the top of this board is a list of doctors you might want to check out if you want a specialist.

Hi Nikkicch! Welcome to the group. I have not read of this occurring, but that certainly does not mean that it hasn't. Many get migraine and CH. Some with migraine only have the aura, not the pain. I have a daughter with this condition. She does not have CH, just aural migraines. Did this only occur in one eye or both?

Hi Bk! Welcome. It would be a good idea to post this on one of the closed boards where you are most likely to get in depth replies. This board is open to the public. In addition the Clusterbuster Files contain a ton of info. Could you start your own thread on Share your Busting Stories or Theory and Implementation? It is a process not one and done as a rule. Again, welcome and I look forward to reading your thread.

You will find Cluster Headaches to be a good group! They have what I would call a 'Facebook Flavor' as I call it, but are the best support group on the site. 1961mom is a very active advocate for CH.

That is interesting Moxie. I look forward to your update on daytime hits!!!

Great to have you here DrLisk.

I am thrilled for you Nikkk!!! Hope the rest of your night was full of sleep for you.

It is pretty well documented that taking M does improve one's mood and outlook. A nice side effect! I have not read on the effect on micro-dosing since it is a new method being tested out by a few people. But, I would suspect that it would produce an improvement in general well-being and outlook.