As stated in another post, we ruled out everything else for my increasing headaches (calcium came back down to 9.9, and Vit D is up to 82). I've been in cycle for 9 months, with only a 2 1/2 week remission. I'm on 300mg topomax. The next thing doc suggested is lithium. is the usual method to combine lithium with topomax? with verap? I have a very active life (I'm 41, I run a lot, have 2 young kids and a crazy busy job), so of course keeping the side effects down is desirable.
Any feedback (not medical advice, I understand) is helpful, and any experience you all have had with these combos is helpful too.

Have you ever tried "ONLY" lithium with verapamil as a preventative...this is the only combo that ever gave me some relief...hoping you find your magic bullet.....Lenny

Only have one experience to share - standard, first line treatment.  Prednizone (80mg start) with taper over two weeks - and Verapamil (I started at 240mg - now doing 360mg).  That killed my cycle for me - and I am due to get another this fall sometime, so I am hoping this preventive crap works.  Replenishing my supply of Imetrix just in case.  We upped my dose of Verap because I have had a couple of relatively strong shadows.

Side effects of the Verap for me is it does make me a bit tired - but that isn't helped by my killer work schedule at the moment.

So - I wasn't clear if you had tried the first line, especially the Prednizone. 

Good luck.  I have been lucky in I have only had one Kip 10 - which is what got me to get the doc to give me a script of the imetrix injections.  I never go anywhere without a double dose in my pocket.

Thanks for the reply. Pred did absolutely nothing for me, and neither did Verap and Verap with Topo. That's why the next course will be some combo of Topo, Verap, Lithium. He's considering Topo and Lithium and see how that works. i was going to wait until Nov for my next appt, but now that my blood work is clear and we know I have no D issues and no calcium issues, I want to address the frigging fact that I just have some increasingly severe Ch. I did a Sumavel shot last night and it barely took the edge off (I feel like a heroin addict after I take it, curled up on the couch in a fetal position).

Damn - I feel for you.  I hope the day never comes when the 'trex shot doesn't work for me - knowing I got that out is what keeps me sane.  Guess if that happens I might have to try the Buster method.

Anyway, hope you find some relief soon.

mike i just commented on your other post and i think we are twins lol. other then im still not sure if you our chronic. I am taking 300mg of Topamax i was on lithium and verapamil all at the same time. It sucked im not going to lie ! I really felt like a zombie. I think it was 600 or 900 mg of lithium and 450mg of verapamil. well he started me on the topamax first at a much lower dose/ did nothing then added lithium kinda played around with the dosages, but my headaches got worse. Then he added Verapamil and lets just say my digestive system didn't like it at all. So i he took me off the Verapamil and the Lithium (he thought it was causing me to get more headaches) think he was right and increased from 100mgs of topamax too 300mgs of topamax. I think the mix is just too much in my opinion although everyone handles it differently. give it a try. i mean you never know, what if it work wonders for you =) gotta stay positive.

BTW im a single mom with a 4 year old and i work 2 jobs a full time and a part time the hardest part with the meds was they make you really sleepy. And the topamax makes you kinda forgetfull but after a while you get use to it =)

Many,many different drug cocktails. The docs are just practicing medicine. Keep on keeping on till you find something that works for you. When you run out of things to try....punt..lol Chin up toes down [smiley=sgrin.gif]
tachead

Curr Treat Options Neurol. 2011 Feb;13(1):56-70.
MANAGEMENT OF CHRONIC CLUSTER HEADACHE.
Leone M, Franzini A, Proietti Cecchini A, Mea E, Broggi G, Bussone G.
SourcePain Neuromodulation Unit, Department of Neurology, Headache Center, Carlo Besta Neurological Institute Foundation, Via Celoria 11, 20133, Milano, Italy, leone@istituto-besta.it.

Abstract
OPINION STATEMENT: Primary cluster headache (CH) is an excruciatingly severe pain condition. Several pharmacologic agents are available to treat chronic CH, but few double-blind, randomized clinical trials have been conducted on these agents in recent years, and the quality of the evidence supporting their use is often low, particularly for preventive agents. We recommend sumatriptan or oxygen to abort ongoing headaches; the evidence available to support their use is good (Class I). Ergotamine also appears to be an effective abortive agent, on the basis of experience rather than trials. We consider verapamil and lithium to be first-line preventives for chronic CH, although the trial evidence is at best Class II. Steroids are clearly the most effective and quick-acting preventive agents for chronic CH, but long-term steroid use carries a risk of several severe adverse effects. We therefore recommend steroids only if verapamil, lithium, and other preventive agents are ineffective. In rare cases, patients experience multiple daily cluster headaches for years and are also refractory to all medications. These patients almost always develop severe adverse effects from chronic steroid use. Such patients should be considered for neurostimulation. Occipital nerve stimulation is the newest and least invasive neurostimulation technique and should be tried first; the evidence supporting its use is encouraging. Hypothalamic stimulation is more invasive and can be performed only in specialist neurosurgical centers. Published experience suggests that about 60% of patients with chronic CH obtain long-term benefit with hypothalamic stimulation.

PMID:21107766[PubMed]

Thanks all. Bob, the steroids did nothing for me. I tried Verap, but at a low dose, and did it with topo. It was during a severe point in a cycle when topo wasn't cutting it. I'm thinking topo and lithium or topo and verap at a higher dose may work, but who knows. Like everyone says, keep trying. I can also "supplement" with sumavel and my good old fashioned running (Like I keep saying, I hate the O2 tank, and only use it in a pinch). I look forward to winter, as running in the cold is even better than any drug. My first incident with a short term "cure" was shoveling snow after a 2 foot dump of a storm. It was the first PF day I had had in weeks and at the time, I didn't even know I had CH.

When you talk about meds used it's essential that you tell us about dosing & frequency.

Example: Verap. You know that it's used in doses up to 900mg. But not knowing what your experience has been leaves us adrift on what to suggest.

Running: try stopping any activity which increases body temp. Elevated temp has been identified as a trigger.

Timing us use, especially of tripans: never delay taking; hit with the first signs of an attack for they are all far less effective if you wait for a fully developed attack before using.

Pred: even run a cycle starting with 100mg and tapering? That's high but not uncommon for Cluster.

Thanks, Bob. The running actually helps, believe it or not. More in the winter, as you stated, as my body temp stays lower in the cold weather. verap, I can't remember but it was a low dose (140 sounds like an odd number but correct?). Pred was 100 and down over I believe 11 days or so, it worked for 1 day only with no headache than came roaring back the next, about midway through the therapy. Luckily, the doc is calling me today, he has my bloodwork. My brother is my GP and is faxing to him, and they will consult on how to handle my diuretic if I start taking lithium.