spiny

Tony, I look forward to reading more on this.

I really like when they try to prescribe anti-depressents for CH. I have been offered about every one of them on the market!!! 1LS, you are the only other Cher that I know of who has been prescribed Thorazine!!! Oh, add Stadol to the list.AKA Butorphanol NS. And Enderol. I think that about every anti-seisure med is on the list too. In their efforts to help they really do offer some 'strange' solutions.

Decades ago Laura. It sucked.

Sorry you are hurting Moxie. I was wondering how your sailing went! Hugs!!

It is great to read of your progress jkandola! Please keep us posted.

I haven't seen gizmo in a very long time Charlotte. Sorry that you can't reach him. spiny

Hi J! Verapamil tapering probably should be started after you get your O2 and feel some response to D3. As a nocturnal ECHer, I started by deleting part of the am dose. Then about 3-4 days later dropped another pill. You need to monitor your BP while doing this. Some CHers have found that they cannot ditch the verap completely due to increased BP reading. For me, it allowed my BP to return to normal rather than running uncomfortably low. Those little BP cuffs at the pharmacy are handy for this. If your hits are mostly daytime, I would drop a pm pill for starters. As for the O2 delaying not killing an attack, that is often because the O2 is not being used correctly. You need to do post hit normal breathing for a few minutes after the hit is gone. My neuro told me the same thing and I told him that they were having issues because they did not know hot to use O2 correctly. Then I set up my welding O2. spiny

I am fairly sure that 720mg would block a bust. The highest daily dose while busting was 360 that I am aware of. It is a blocker so far as we know at high doses. Yes, a taper will take more than 5 days. That is where your O2 and energy drinks come in - they help you get thru the tough times while reducing your verap. intake. It is no cakewalk but the benefits can be remarkable. Melatonin at 10-20mgs can help with nocturnal hits. So can sleeping in a recliner.

Great info there bhs. This is something that Headache On the Hill has been working on for about three years now - getting Medicare to pay for our O2. As the best abortive out there I would say that O2 is medically necessary. It is an uphill fight though. This is also the reason many use welding O2.

Welcome! Sounds like you have already done a lot to help yourself!! Good for you. Please go to the D3 regimen given above. It includes more than d3 and is an anti-inflammatory regimen. It has helped many to at the least lower the intensity of their hits. I stay on it year round. Good stuff. My cycles used to be shorter in the way back, but I have had an 8 month cycle year before last I think it was. Yes, that will get you worried!! All night, every night. Sucked. In the way way back machine I was chronic but the hits were shorter and milder. It does not help to worry about being chronic. Mine vanished for about ten years and returned as ECH but at a much higher cost. Sooo, for me CCH was actually easier. Then they only came during the day, as an ECH, they come for the entire night , every night. I would try ditching the trex for a few days and try busting. Lovely light down that tunnel from my info!!!!! ATB

Welcome!! Sorry that you have to be here of course. It is wise to taper off the Verap and keep an eye on your blood pressure. It is likely that you can taper part way down and do your first bust while still on it. Some have busted successfully while still on 240 to 360mg. I take it that you have CH along with daily headaches? What other meds are you taking now? Do you have O2? Have you tried an energy drink to abort a hit? There are lots of ways to make detox less miserable than it can be. Glad that your are reading up on the process! And yes, the five day detox is important for many medications. Other medications can ruin a bust as well. It might be a good idea to start your own thread. ATB spiny

'Reading all the blogs that in no way represent the experience I, and so many others, have had at the clinic serves no purpose for me.' Well, that says it all. You have posted on three of the Boards on this site. They all say the same thing. CURE. You want to speak at our conference even. You accuse this site of not honoring its' mission. In addition, you have provided no facts to support your stance. We will keep an eye out for Neurologist's testing and replicating this methed for sure. If it is proven to be effective as a cure, I am certain that we will all celebrate and post the outcome here. For now, perhaps you could provide facts? I am sure that my friend in South Africa, who has also undergone this treatment would be quite interested in reading them. I have had CH for over 40 years. I have had a ten year remission during that time. I have seen treatments come and go too. If this treatment proves to be a 'cure' without creating casualties along the way I might be interested. Facts please.

Great article Purp!! Thanks for posting it. It is great to have the researchers finally re-thinking some of these drugs isn't it?

Not that I know of. I use the mouthpiece and it has a valve for exhaling. Mask should do the same.

You have gotten great advice to which I can only add a little. I always hit the coffee on my way. Keep an iced cup in the fridge to minimize time. You want your flow rate high enough to support your breathing technique. The bag should fill for you so when you exhale you have enough to inhale deeply. I used to count breaths till abort and then count breaths to equal for post time. Then, i realized that I was breathing slower for post, so went to half. In other words, if it took 84 breaths to abort then I went 42 breaths post. Could not watch a clock. I am pretty sure this is covered in the link from CHF, but you dial back your flow rate to allow relaxed breathing post. I also second looking down at your feet! Good luck and congrats on getting some O2!! spiny

You are a great supporter Cory! It also sounds like he heas a rather enlightened doctor. I am so glad that he is getting relief now. Hopefully he will soon be PF. Isn't it amazing that something as simple as vitamins and melatonin can help? I look forward to reading more on his journey to PF status. Hang in there and he might even concede to trying the O2!!

Since it is the allergy season for many. I would go for an allergy pill to see if it opens his sinuses, It would not hurt and may very well help. Some people are now adding Benedryl to the D3 due to allergies and getting positive results. I hope that he is doing better now. Being stuffed up is annoying and the pressure can hurt!

Sounds like the D3 is working well for him! So glad to read that. For some it is gradual over some weeks to attain PF status. For others, it provides a significient reduction in severity and number of hits. It is great that you are getting his levels checked. I really hope this takes him to the PF status!!!!!

Hi Cory, I don't know about the blood pressure meds, but if it is leaving him sleepy in the mornings I would discontinue the Melatonin. A lot of us take 10-20mg per night without feeling groggy the next day. For now, I would just do the D3. Is he noticing any relief from it yet? It can take a few weeks and then eliminate the hits for some and reduce the level of pain for others. ATB

So, where did the money go? When I set up an account for a friend Monday it would not accept Clusterbusters Inc. We used a default charty for her account. When I went to place an order with my account today, Amazon had switched my donation to the charity selected for my friend. So, now my donation does not go to CB. I know that this has Bob W.'s attention and he is working to get it fixed ASAP. I also feel and understand your frustration.

Lomerizine is a calcium channel blocker much like Verapamil. It is given for migraines according to my limited research. It may actually help as Verap. helps many Cher's. I hope it works!!! The imagran injections will be much more effecive than the tablets. Over here it is called Imitrex and many take it in the injectable form. Tablets are good for migraine and the injections are used for CH. But it is one suspected of worsening attacks and length of cycle over time. In the short term it helps many. Much like the Zomig you are already taking. That is a shame about the O2. It is the best and safest abortive.

Hi happymeal. It is really hard to say about the first headaches. Especially since your cycle has changed. Alcohol is a trigger for me sometimes and depends on the variety that I am drinking. It used to be an instant trigger in any form. But, I am with you in hoping that was the start so the end is nearer!!!! ATB spiny

Hi Cory! He will need O2 with a non-rebreather mask. The lowest acceptable flow rate is 15LPM. It should be scripted for 'as needed' so he does not get any flack about size of tanks or how many. You will want at least one big tank for home use. If you can get small tanks too for work, travel,etc. We can give you the info for the best mask - under 30.00 I think. And you can buy higher flow regulators on line if he needs more than 15LPM as many of us do. No nose cannula or concentrator setups - won't work. There is a great article on here about how to use it. That part is vital and most doctors do not know the techniques that work the best for aborting a hit. O2 will be his best friend!! Good luck on that visit!!! It helps to have an advocate with you when getting started on this stuff. You can back up what he says his pain level is and so forth.

That is awesome Bob!!! Finally CH is getting some of the attention that it deserves.

[move] ;DÂ Â ;DÂ Â Â [smiley=2vrolijk_08.gif]Â Â Â ;DÂ Â ;D[/move] Hysterical Prof!!!! Thank you!