New and worried

[CHsuckedmylifeway]

Hello everyone I am newly diagnosed with cluster headaches I have had the same headaches for going on 7-8 years now recently switched doctors as I changed insurances.. previously I had been told my headaches were migraines and being the naive 22 year old I was I thought obviously my GP new best. Previously my cycles were predictable one in early fall typically lasted 2-3 months and another in the spring.. lately my current cycle started around November or October of last year and the only relief I have had was while on steroids... I'm currently on 480 mg of verapamil. Unfortunately due to depression medication interactions I cannot use triptans.. my new pcp thankfully has experienced a patient with CH before so she recognized it when I presented. Neurologist recently did a nerve block on me with mild relief of the pain but not the frequency of attacks. My major concern is how long the cycle has lasted as well as my average pain level has progressed from a 4-5 kip to most often an 7-8 with spikes as high as a 9 9.5 just barely below the level where I would do anything to stop it

[Dallas Denny]

Welcome to the community CH but sorry you had the need to join us!

First order of priority with clusters is to either get a script for hi flow oxygen from your doc or set up your own rig with welding oxygen..

Second, look into the vitamin D3 regimen in in clusterbusters files section of the board.......you need to in incorporate all of the regimen for it to work properly.....you can begin immediately but you'll need to have a 25 (OH)D blood test ran soon to find out what your level is

Third will be the info on "busting", info is also available in the clusterbuster files section 

Dallas Denny 

[CHfather]

++ to what Denny said. GET OXYGEN, start the D3 regimen, look into busting (in the numbered files in the ClusterBuster Files).  Busting has saved many a life, oxygen has made CH a lot more tolerable (abort an attack in 15 minutes or often considerably less), and D3 has been a game-changer.  FWIW, there are substances other than triptans that can be successfully used as abortives. Or at least one, that I know of -- octreotide.

For many people, Verapamil doesn't become effective until they reach considerably higher levels than you are taking.  960mg is not uncommon.

Try drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack (most people prefer them very cold).  One of the true experts here says you need to drink at least two liters of water every day, and that when you have an attack, drinking ice water through a straw so it hits the CH side of your palate will help a lot.  Energy shot + oxygen yields pretty quick aborts, and D3 lessens and slows down attacks so O2 works faster.

 

[CHsuckedmylifeway]

Thank you Dallas and CHFather for all of the information I will definitely be looking at those got the prescription for the oxygen taken care of today should have it in the next day or two. One of my biggest worries and hopefully someone knows the answer is it normal for a cycle to go from fairly regular cycles to an extended cycle as I am having now. I have seen previously that occasionally you can go from episodic to chronic but that it is fairly rare 

[CHfather]

To avoid frustration, it might be wise for you to contact your O2 supplier to make sure you are getting the right equipment.  Many of them are not used to providing for people with CH.  You want cylinders (tanks), not a concentrator.  At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank).  Multiple versions of each tank are better.  You need some kind of stand, at least for your larger tank(s).  You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask.  These are all things they should know to give you to treat CH.  When the stuff is delivered, have the delivery person set it up for you and be sure it's working.  You probably will want to buy the mask made specifically for people with CH, which many people love.  It's here: http://www.clusterheadaches.com/ccp8/  And if you only get regulators that go up to 15 lpm (which is typically what doctors specify), you might want to buy some higher-lpm regulators.  I think you might do just fine with 15 lpm for now.

If you have essentially had no attack-free periods since last fall, you are on the verge of meeting the official definition of chronic. I don't know what to tell you about that.  The main thing is that there's a whole bunch of stuff that is going to make managing your CH, chronic or episodic, a whole lot better, starting with the O2.  More than a few folks who are chronic have become practically painfree with the D3 regimen, and the same can be said for busting.  Maybe raising your verapamil dosage will help.  You really don't have to fear a lifetime of the kind of pain you have been experiencing lately; nothing close to it.  And, there are very promising clinical trials underway of pharma things to treat CH.  

[Don O2]

It is very common for CH cycles and frequency to change. I have changed from chronic to episodic more than once, cycle length has changed many times. I'm chronic now and find it almost easier! My attacks seem easier to abort when chronic. Also, I can have a cocktail with no effect. When episodic that is not possible.

Oxygen is my #1 abortive, I stop up to 97% of my hits with O2 only. Used it this morning. They posts above are giving you good information. Anything we use to stop an attack must be used as quick as possible. Waiting to see if it's a bad one can result in failure to abort . The fight is our own so we have to take charge of our own treatment. 

[CHsuckedmylifeway]

Thank you guys for all of the information I am very hopeful that me and my care team can get these under control. First positive outlook I have had in a long time was meeting with my neurologist once he saw CH in my chart he immediately went to business with what we were going to do to try and manage mentioned several studies that have shown promise in treating. I can honestly say I'm glad I ended up with him because he seems very knowledgeable and on top of things he has even contacted me yesterday and today to see how the attacks have been since nerve block and since I have seen some improvement he squeezed me into his schedule to do two more of them 72 hours apart. I won't lie since this last cycle  started I have lost my job due to the debilitating pain I am in daily am on the verge of losing my significant other i honestly had lost all hope and was ready to give up. I'm glad a family member found this forum and recommended it to me I'm starting to feel like there is hope that I may one day be pain free and get my life back. .... Update the beast is back and angrier than ever after two days relatively mild with both attacks and pain last night he reminded me that he will not go easily between the hours of 12-6 am I had a total of 4 occurrences of him showing his ugly face pain levels ranged from a 6-8.5 at the worst. Unfortunately o2 is not scheduled to be delivered until this afternoon. Thankfully my neuro already had me on schedule for this morning to do another nerve block so hopefully this one provides me more lasting relief 

[xxx]

Hey CHsuckedmylifeaway,

I've sent you a message with some additional information.  To read it, click on the envelope icon in the top right blue border at the top of this page.  Nerve blocks can bring wonderful relief from the CH pain.  However, as they are only providing symptomatic relief and not addressing the underlying causes of CH, they don't last... unless you are episodic and your cycle was ending anyway.

Take care and please keep us posted.

V/R, Batch

[CHsuckedmylifeway]

Thanks batch I appreciate all the info will be reading through it as soon as I get home. My neuro ordered an MRI Monday when I saw him to rule other other causes and reviewed it with me today as well as doing the nerve block. I will admit I left with a few questions I wasn't sure how to ask him but he noticed an anomaly in my brain that my attacks occur on. He ordered a follow up MRI in 3 months to verify that it is stable and has not grown. He said that if stable it is most likely an anomaly in the venous structure of my brain which has been shown to have come correlation to CH. anyone with similar result ? Also he stated if the blocks do not work not to be discouraged because treatment has come a long way recently and there is more we can try. I just looked at the recommended doctors list he is unfortunately not on it but I will say from my experience with him so far I would definitely recommend him to others very understanding of the condition as well as seems to be very knowledgeable about CH treatment and research that is currently going on 

[CHfather]

In my opinion, the longest ways treatment has come recently (not counting clinical trials still in progress) are high-flow oxygen with the specialized mask; the D3 regimen; and busting (and, to some extent, melatonin and "energy drinks").  Probably none of those are things your doctor was thinking of.  Doesn't mean that there aren't plenty of pharma and other "medical" options that you probably haven't tried, and it's great that he knows what they are, but I'd put my energy into those other things first.

[CHfather]

Here are a few articles about venous conditions creating CH symptoms.  Of course, these might or might not have been what is shown on your MRI.  In one, it says these conditions are highly responsive to oxygen.

https://link.springer.com/article/10.1007/s10194-010-0186-3

http://jnnp.bmj.com/content/76/8/1084

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2854946/