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A little update. I was having migraines everyday for about 2 weeks before the Botox. After the Botox injections I had some small headaches but they never got bad and went away on their own. Sunday night I did have my first migraine since the Botox injections. I think it is to early to call it a success, I will keep updating weekly.

Sorry you are having such a rough go with the CH Eli, but glad that some of the best, most qualified advisors possible have been weighing in here so far. From this it sounds like if you were to keep up with the alternative therapy (busting?) every couple months, you could go into some genuinely long term remission, as many before you have? Although personally of the male gender, I have long suspected that the refusal of so many doctors to diagnose females with CH has been based on a self perpetuating medical myth that it is so much more prevalent in males. If you are continuing to use imitrex, one strategy you could consider would be to have a lower dose syringe pre-loaded and ready to go so there wouldn't be any real thinking or calculating required when you need it to administer it. This would probably require being well rehearsed with exactly what you would do when the time came, and this rehearsal could be done at a time when you are not actually having an attack. I have been there and done that. Markings of (2mg) doses on the syringes, and a plan for super easy, painless subcutaneous injection in the abdomen were part of the preparation process.

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 1 in 10 has changed to 3 in 10 and is now at 4 in 10 I believe. I find it unfortunate and infuriating that doctors don't keep up with their own field!!! But, CH patients are few, so I sort of understand it. There are at least two studies in the US currently that are testing Magic Mushrooms for CH, so that is a huge plus! As a woman, you will find that you almost certainly have to advocate for yourself. And almost all CHer's must advocate for themselves too. Have you tried an ice cold energy drink at the first sign of a hit? It can really help. I can't tolerate them, but use iced coffee for the same purpose. I grab it before I hit the O2. In addition, as soon as you wake with a hit, begin deep breathing and forceful exhale on your way to the caffeine and O2. I think it pays to have a plan of action for your hits as that can help occupy your brain with meaningful stuff to help as opposed to quickly falling into hell and thinking there is no way out. As in the more control you have or you take, the better the outcome. I have found that anger with the situation causes my hits to be worse. When I 'take control' by doing X in an orderly fashion, it keeps the pain level lower. My anger jacks it up even worse than it would have been. Have you tried the D3 Regimen? It can be a big hammer in your arsenal! Many have gone completely pain free just taking the vitamins. Others experience a reduction in pain level and a slower ramp-up of pain. Both of those things would be a huge help for you. I am not sure what country you are in, but some require a script for D3. Others do not. In addition, we love naps when we are in cycle, right? Try to make up some lost sleep. Well, in short order those naps become a trigger in themselves. You fall asleep and wake with a bruiser of a hit. Naps become a no-no and a strict sleep schedule often must be implemented. If you sleep in a recliner with your head kept higher than your heart, you can get some decent sleep and will wake sooner in the attack if/when it comes.

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.

Hi Eli. Unfortunately most doctors don't understand Clusters, including many Neurologists! Many years ago I was told NOT to take Birth Control because of migraines. And i was also told that women did not get Clusters as well. Well, how wrong that was!!! Many doctors need educating on Clusters. I did HRT with no issue regarding my Clusters. Perhaps let your Gyno know that Clusters are NOT migraines, but are often treated the same because they don't have 'meds' for Clusters, just hand-me-downs from migraine patients. He should let you do a trial run at least. You might get more hits and likely you won't see any change in your head, but the 'other' will be helped immensely! Best of luck! And have you tried O2 using the proper flow rate and mask so that it actually does something? Or were you handed a script and sent on your way with no instructions? It makes a huge difference!!

.....ummm....welll.....if you bust every 2 months you might just get that year....and more.... .....i used the triptan zomig nasal spray (5mg) as abort of last resort (carried on person at all times).....no fumbling with needles or injectors....a simple press and inhale. worked better for me than imitrex.....

hi Eli, ...i assume this is referring to mushrooms or some other busting substance? ....postponing a cycle would have had me doing the happy dance every day til the next cycle...and i used to have one every 6-8 weeks...even avoiding ONE hit was cause for celebration... ...busting is not a one off deal....folks who bust determine dosage and frequency based on personal experience. if you get 2 months "free" for each bust then your periodicity of busting is evident... ...sorry if i'm missing something...just really puzzled why you would not pursue this further....you are on the right site for insight... best jonathan

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.