CHfather

I posted a comment about how I thought he had understated the pain of CH by suggesting that attacks are far shorter than they actually are and not saying that they are day after day, often many times a day, and that I also though it was surprisingly uninformed about CH treatments. Of course, that comment is now submerged among hundreds of others, many along the lines of "I stopped gluten"; "Mine stopped with menopause"; etc. But, as you say, at least it's out there. Practically any time I have ever read a newspaper or magazine article about something I actually knew something about, I have found it disappointing -- inaccurate, inadequate, whatever . . . . So why do I still give so much credence to ones that are about something I don't know much about?

Attached here. NYT - CH 7-22-21.pdf

Seems like a very good awareness article. (I have attached a PDF to my post a little below here.) A little mystifying that the author seems so helplessly clueless about treating his own CH. https://www.nytimes.com/2021/07/23/opinion/headaches-research-cure.html?action=click&module=Opinion&pgtype=Homepage

We're happy for you to be here, Momma', but (as it is said) sorry that you have to be here. CH is defined as chronic if you don't have any pain-free periods that last a month or more.

I think it's pretty common over time for cycles to vary in duration and also in the regularity/predictability of attacks. Do you feel like your treatment of your attacks (including prevention) is optimized? Sounds like in the past the cycles have been infrequent enough and relatively brief enough that you might have gotten by with less than optimal methods. This post might have some ideas for you: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ For a feeling of understanding and solidarity (and great info), there's nothing like attending a ClusterBusters conference with a few hundred other folks. This year's is just outside Chicago, September 23-26.

"“We not only saw a 10% increase in the number of neuronal connections, but also they were on average about 10% larger, so the connections were stronger as well.... It was a real surprise to see such enduring changes from just one dose of psilocybin." https://news.yale.edu/2021/07/05/psychedelic-spurs-growth-neural-connections-lost-depression?utm_source=YaleToday&utm_medium=Email&utm_campaign=YT_Yale Today-Best of the Week Public_7-17-2021

If you don't intend to see any kind of medical professional for a month (and you anticipate that your cycle might continue for that long or longer), I would seriously consider setting up a system using welding O2. That's a lot of pain you would very substantially reduce, and the mask and regulator could be things you would want to buy even if you decided you wanted medical O2 (and could get a prescription). (Seems like your cycle has already gone on a longer time than your previous ones, so maybe you're hoping it might be ending soon.)

There might be some helpful info in here (and in the replies) for you: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ There is some info at the end about "busting," which is something you should know about.

I guess this NHS page might be a guide to brand names for diphenhydramine. https://www.nhs.uk/medicines/diphenhydramine/ Note, however, that it lists brand names in Part 1, but only says in Part 2 that some of those brands have diphenhydramine mixed with other medicines. Benadryl is time-tested. I will mention, though, that Batch has suggested Quercetin instead of Benadryl. More can be read about that at the thread titled "Ditch the Benadryl."

Brad, very glad to read this! I'd like to consider adding B1 to our list of possibly-beneficial treatments, but I have a question. You first reported using the B1 on June 22, and it seems you started the B1 on 6/21. In your most recent post, you say that you had bad attacks up to July 4 (~13 days). In the case study you referred to, the patient had "decreasing frequency of attacks until they disappeared completely within 10 days." Was your experience like this, with steadily decreasing something (frequency or severity)? Sounds more like in your case it was more like same same same over. If you credit the B1 in part for ending your cycle, is that maybe because you ramped up your dosage slowly? (I would suggest that during your PF time (may it last forever, but just in case) you might want to work on getting an O2 system.) Glad you can go back to the job you worked so hard to earn, and keep up your studies toward that next one!

There have been one or two reports of people getting O2 prescriptions from urgent care, but I think it's typically a no-go. I think your chances are increased if you have some kind of written CH diagnosis that you can show them, so you clear the diagnostic hurdle and now it's just prescribing. Every time I deal with any medical person, I ask them if they know what to prescribe for CH. 95 percent of the time they know that it's O2, which makes it all the more shocking that the actual rate of prescribing O2 is so much lower, so I don't know if they're not certain of the diagnosis when they see (or hear about) CH symptoms, or if they just chicken out about prescribing O2 and prefer to leave it to your physician. What about welding O2? https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ And be sure to seriously consider splitting your trex if it's a 6mg injector. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

In a study, eating fatty fish and flaxseed while reducing linoleic acid consumption had a big effect on migraines (40% reduction). ("The major dietary sources of linoleic acid are vegetable oils, nuts, seeds, meats, and eggs. The consumption of linoleic acid in the US diet began to increase around 1969 and paralleled the introduction of soybean oil as the major commercial additive to many processed foods.") There's a suggestion here that eating the fish and flaxseed is better than taking Omega-3 supplements, and a suggestion that the diet affects pain pathways, which is why I thought it might be relevant here. https://www.bmj.com/content/374/bmj.n1448

The only thing to request from your doctor is a prescription for oxygen. The standard prescription is something like: "Oxygen therapy: 15 mins at 15lpm with non-rebreather mask." The prescription then gets provided to an oxygen supply company, and that's where you need to put your attention to get the right equipment. In essence, that's cylinders (tanks) of O2, not a "concentrator" that makes O2 from room air; an M or H tank (the large types, for home use) and at least one E tank (portable for car, office, etc.); and a non-rebreather mask (NOT nasal cannula). If they'll give you a regulator that goes up to 25lpm (liters per minute), that will be nice, but most will just give you 15 lpm. You might read the "Oxygen" section of this document --https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/--which repeats what I said here and expands on it in some places. The big hurdle is getting that prescription. If there's someone you can talk to at the doctor's office in advance about the doctor's inclination or disinclination to prescribe O2, you might be able to provide information if needed to sway that decision. That info is in the file I linked to above. At the least, you might bring some of it with you.

@trjonas Just curious -- Are you taking Neurontin (gabapentin) or a similar medication as part of your post-operative therapy? I ask because Neurontin is often prescribed in nerve-regeneration situations (and it's also sometimes prescribed for CH).

@Brad, how are you doing????

Yes, yes, yes . . . OXYGEN. Any way you can get that sooner than waiting for your appointment (a physician you can call for a prescription)?? You could set up welding O2 pretty quickly. You should start the D3 regimen, too, but it's not likely to have an immediate effect. Busting -- sure. I would not abruptly stop verapamil without checking with a doctor. In fact, you might not be taking enough verap (some people need dosages in the 1000mg range for relief -- but you also can't go up very abruptly). Have you read this file? https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ There are some things you can do to get through an attack better (energy shots and some specific strategies) -- listed toward the end under Other Treatments . . .

Brad, hoping that the B1 is going to continue giving you relief! I looked up that case report that you mentioned and it is encouraging (https://www.hindawi.com/journals/crinm/2018/3901619/). Of course, you know that you could set up a welding O2 system in a couple of days. Maybe your current relief will be long-lasting (or permanent), so you can wait to see what your neuro says after you make up with her next week.

Brad, this might not be very comforting, but you have to consider that your terrible hit was a sign that the busting is working. These kinds of unusually bad "slapbacks" are part of the process for many (or most) people, and they're the best indicator we have that the busting had an effect. I really, really hope that's going to turn out to be true for you. The standard wisdom here is that typically the slapbacks are less bad after the first couple of busts. You seem like a person who would have diligently tried practically everything, but I have to ask along with xBoss about whether you have tried optimized oxygen (properly high flow rate, top-quality mask, best breathing technique) and whether you're doing the D3 regimen. (And some other possibilities, such as Benadryl or Quercetin, energy shots, etc.) I know there are a lot of people here feeling your pain and wishing for better days for you.

Brendan, here's a link to the licorice root info. https://clusterbusters.org/forums/topic/941-licorice-root-summary/

A new expression to me, too, but worth remembering, although I'll have to work hard to fabricate an occasion when I'll get to use it.

Jeebs, My recollection is that my daughter's first bad cycle followed a tooth extraction, when she had only had occasional "bad headaches" before that time. The extraction itself was difficult, and for a long time we were blaming the dentist for having caused her CH (which at that time (and for much too long thereafter) was diagnosed as trigeminal neuralgia). I don't remember specifically whether she was having those "headaches" at the time of the extraction, so I'm not fully answering your question, but the shift in severity was very large.

Glad the verap seems to be helping! I have read about Indomethacin being prescribed as an abortive (to be taken to stop an attack), but I don't think we've seen anyone here (admittedly, not a large sample) who wasn't prescribed it to be taken at regular times each day, in consistent doses, as a preventive. That's the context in which I think the previous suggestions in this thread are offered. Down close to the end of this post -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- there's a section about dealing with shadows for CH. Since Indo can be such a harsh thing, I think I might suggest that you try some of those things before resorting to the Indo.

The Vitamin D3 regimen accomplishes this for many people. So do many pharmaceuticals, including verapamil. But these have side effects, while the D3 regimen, if taken properly, has practically none. I have to say that your CH seems very extreme in the way it comes on, overwhelming you so very quickly with so much pain. I'm sorry -- that must be particularly terrible, even for CH.

If you need or want sumatriptan injections in the future, you can split them so you are using less each time. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Some doctors will prescribe it in vials with syringes so you can measure your own doses. Most people need less than the full 6mg that is in the standard injector.

It's great that you are getting relief. Carbolitium = lithium; Deltacortene = prednisone. Lithium is a good preventive used for some people with chronic CH. Hopefully you will find the side effects manageable and your doctor will help you find the right long-term dosage. It is generally considered a very bad idea to take prednisone regularly because of its effects on bones and joints, among other things. 50mg/day seems to me like a pretty strong dose. When you say you "tried everything," does that include the preventive vitamin D3 regimen? Does it include high doses of verapamil? I assume it includes properly-used oxygen and an injectable triptan. If you did in fact try everything that is typically prescribed for CH and none of it worked, then you might think about whether you have a condition that looks like CH but isn't, such as a hemicrania. The prescriptions you are taking now would probably work against hemicrania, too. Lithium might turn out to be okay as a long-term strategy, but I think you really have to think twice about taking prednisone for an extended time.