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Lithium or Occipital nerve block

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Went to the Doc yesterday and was recommended Lithium and or a Occipital nerve block. Declined the block for now and took the script for the lithium. I know how to work the search feature on this page and have done a lot of reading about lithium and it seems like people try to stay away. I want to know if it has helped anyone. I read that you should not bust when on Lithium, What happens if you do? Has anyone had a bad experience?  Yes it has side effects but are then any worse then the feeling of having you tooth pulled out of your head 3 times a day? I have played the Verapamil game, do the D3, bust with whatever I have on hand and still get hit every day. Yes it is only 1 or 2 times a day at the moment but it still blows. I am just tired of trying all kinds of stuff that might help or help a little for now. I will most likely take the lithium along with the verapamil d3 and bust on weekends regardless of what people say but I figured I would toss it out and see what others have to say. I know this is the life we as clusters live and it sucks. I am just in a mood to bitch today. Any advice or experiences?  

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The nerve block was very helpful for me. I had it in November and again earlier this month. I'm on other things like Verapamil, but I found that made a big difference, almost immediately. Was there a particular reason that you refused it?

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Fun Times,

Please read Playing Well Together in the Clusterbuster Files. It has been pushed over to page three. It will give you some needed info on the Lithium! ;) 

It can be some nasty stuff. 

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Anecdotal reports suggest that lithium can greatly potentiate the effects of LSD or mushrooms, and that it can produce very unpleasant feelings. An examination of a number of reports suggested that lithium can either increase or decrease effects.

So would this mean it will work better? I am not afraid of tripping so increasing the effect would lead me to think it works better. 

 

The combination of lithium and tryptamines may even produce episodes that seem like, and that perhaps are, epileptic seizures.

Is this on any dose of Lithium? What is the likelihood of this happening and what would the outcome be? Trip to the ER? Permanent damage?

 

I did not take the nerve block yesterday because I did not feel confident in the doctor I was talking to on this visit.  I told this doctor that I do use LSD and Psilocybin and she said it would be ok with the Lithium. I know I have read bad things about it here so I said I will hold off for the nerve block until next visit. This was a new person filling in for the doctor I have seen in the past. 

I just dont know what I want to do if anything at this point. Having 2 hits a day is not all that bad, is this just the way it is going to be the rest of my life?

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Hey FunTimes!

One name that comes to mind is Giuseppe from the old ch dot com board.....I recall that he has fairly good success with the lithium/verapamil combo!

I can't recall any reports from folks that busted while using lithium....I've always just parroted the info we have in our files about it being an enhancer.

DD

 

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I don't have the answers either, sorry! Perhaps I can get a friend with a message to see if they have more info for us Fun Times. 

As I recall lithium has a looooong taper too. You have to be pretty easy with it.

 

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If lithium does affect the trip associated with a tryptamine, that probably wouldn't make the tryptamine more effective at treating CH, since the trip and the medicine effect of the tryptamine are two completely separate things. 

As with Denny, I only "know" about lithium interactions from what was written in the CB Files.  I do know that lithium has helped some people.  I know that from reading about it, seeing it first-hand, and from medical research. It is generally not recommended for people with episodic CH because the rebound attacks when stopping it can be quite severe. It has to be monitored closely because of possible side effects.  I don't know how the other possible pharma preventives, such as gabapentin and topirimate, work with verap, but maybe they'd be worth considering.  Maybe even trying the 25mg of Benadryl 4/day?? They all have side effects of their own, for sure, but maybe overall less than lithium, and a less burdensome than the lithium monitoring.

Just checking -- are you taking the verap at least 8 hours apart from the calcium in the D3 regimen?  Apparently that matters.

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Lithium is one of those two edge sword drugs.  It can make you feel pretty crappy even if it works.  You need to be on it a while to work and constant lab monitoring is mandatory.  This is not a med you screw around with.  The overall data a lithium is pretty plus minus and seems often to be a drug of last resort.  My thought would be to try the block as long as the physician has reasonable experience (50plus) with the technique.  My rationale is that the block is a 1-3 time try and does not have long term side effects.  I realize you have been through the mill with this and you should be open to all things.  Prioritize the interventions in a way that make sense.  Mixing lithium with psychoactive compounds may produce unwanted experiences so great caution is advised. Positive thoughts

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FT...totally get your reluctance with a physician unknown to you...if you can find one you know/trust I'd give it a shot. Didn't work for me but any side effects are transitory.....and the potential is enticing....

Edited by jon019

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CHfather- I am taking the verap 8 hours apart form the D3 and I do add Benadryl when things ramp up around the change of seasons and it does help.

I still have not taken the lithium out of the bag. I think I will hold off on that and talk to another doctor, I go back in a month. I also signed up for another clinical trial so I can also ask them about it as well. The nerve block may be the way to go but with someone I feel better about doing it. Not that this doctor was not able to do it or didnt know what they were talking about I just did not get a good feeling about the way they carried themself. I am open to try anything and mix and match things, I did plenty of that during high school and made it out alive!. I just feel more confident with the people here then in a doctors office with someone I do not know truly knows what we are all dealing with.  

My Emgality experiment kind of stalled out. I went from 95 headaches the month prior to taking the first injections down to 45 the month after. I have taken the injections 2 more times since then and am holding at the mid 50's per month. I will give it a few more tries and call it quits on that one too. I have a feeling the first time I took it and it cut my attacks in half was just a coincidence. 

Thank you all for your advice and I am sorry if I wasted your time with my rant. What I think I need is a reset button and start treatments with a clean slate. I might have to may things going on at once and im screwing myself up with inturn messes with my thinking. 

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FT..you may want to continue with the Emgality for a while more as the body needs to learn that the anti-CGRP fits the CGRP receptor and thus can block the binding of the CRGP to the receptor when the CGRP is released by the body. Some body's will learn this within a couple of weeks, for others it will take up to a couple of months. I've been on a similar med Aimovig for 5 months with no result -instead I went up to 170 a month-, while luckily for others it proved to be helpful after 3-6 months.

My last resort is also lithium, but this is really scary stuff. If I would take it, my neuro advises to first start a tapper of prednison, slowly increase the lithium (have your blood monitored constantly), while also decreasing the verapamil until you reach an equilibrium (CH have reduced or more or less stable in number of attacks), and then increase lithium slowly further and lower the verapamil to zero. By then the prednison can be reduced to zero. The whole process may take quite some time and for a good reason as my neuro stressed that suddenly stopping verapamil and starting lithium generally gives very adverse effects. It may turn out that if this occurs, returning back to verapamil, even in high doses, does not give the same result as before.

All the best        

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I have stopped taking all meds for 3 days now and do not notice any change in cluster behavior if anything it has gone down. I do realize that I still have some in my system and that the shit is bound to hit the fan sooner or later but as of rite now I feel good. I am not due for the next shots of Emgality until the 14th so I will see how I am feeling by then. 

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Brave, smart maneuver. The therapeutic dose of Lithium is very close to the toxic dose (getting dehydrated can cause toxicity) thus the necessity of having your levels checked. Read up on lithium toxicity. I was put on lithium & had toxic reactions even though I wasn't dehydrated. Best wishes for success.

Edited by Brain on fire

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Day 5 of 100% pill, med, vitamin and everything else free. Still feeling better then I was before I quit it all. I have gotten 1 or 2 hits a day that I do use oxygen on but over all I fell surprisingly good. Hope I get through the weekend, they are worse then weekdays due to relaxing I believe.  I will continue to go without taking anything for a few more days then I need to decide if I am going to order Emgaility, I am due to take that next Friday. 

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I can say that I understand dumping it all. That is the only way to find out if it is truly helping or not! Personally, I would go back on the D3 Regimen. Just because it is good for you and does not interfere with other stuff to my knowledge. It is wonderful that you feel better minus that stuff, isn't it? 

Best of luck this weekend!!!  

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Good for you @FunTimes! I like to know what is working so I put my time & effort into one ch thing at a time. Of course oxygen will always be on hand.

Edited by Brain on fire

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I went the lithium route, never managed to get to the therapeutic levels simply because I am treating for low thyroid and every time I went up in my lithium dose my thyroid levels would tank for some reason, so had to up my Synthroid, stabilize then try to go up again, I ended up hitting a point of no return where I could not increase lithium without seriously worrying about my thyroid levels as I could not go up any more on my Synthroid, in the end, the lithium did not do a lot for me, improved mood but made me a bit...blah and omg the peeing, considering I was doing the prednisone dose and taper at the time, I thought I could not exist outside the bathroom for the amount of urinating I was doing.

 

Occipital nerve block, was miss the first two times simply because I believe they 'missed' the third was done by one of the leading neurologists in Canada specializing in headache disorders, Dr LaRue and she did it in a semi-circle around the occipital bone, I know she 'hit' simply because it triggered one, the only issue was the block for me only seemed after that as 'topical' feeling did nothing for me. As a note, I seem to be one of the 1% of the 1% of refractory chronic clusters that have little to no relief from nearly any treatment. 02 takes the edge off, has never aborted, sumatriptan was the only thing that aborted, after about a year it became 3 in four injections aborted with the one partially aborting. When it got down to 50/50 and they doubled the price of even the compounded injections, I ended that.

I also had tried the nasal ganglia block, the needle up the nose, while my eye and cheek went numb, it provided no relief. 

 

One of the other things that seemed to at least affect the beast for me was a 4 day in hospital dhe infusion, it seemed to scramble my times, intensities and occasionally the duration, they stayed in flux for several months after even doing at home dhe injections, though they did make me feel rather off. So if not tried and you have a good Dr, look into the Dihydro ergotomine regimen.

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@devonrex have you tried nasal ketamine? I understand it can be effective for refractory chronic ch. Hope your Devon Rex kitty is well.

Edited by Brain on fire

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Thank you all for the info. A little update, I am now on day 10 and still have not taken anything other then oxygen and a few 5hr drinks. I still feel better overall and the hits are just about the same. I am going to try a bust this weekend thinking that most of my system should be clean. I am due to take Emgality tomorrow but this I will hold off and see how the bust goes this weekend. 

If I were not keeping notes on every cluster I get I would think that they were a little worse then they really are but looking over the times kip level and duration everything seems to be just about the same now as it was 2 weeks ago. 

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@FunTimes that's incredible. It would be fantastic if getting off the pharma & busting was the answer for you after all that pharma & supplements not helping you.

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So happy that you are in a much better place. May your bust be a huge success! I wonder if the meds were messing with the D3 Regimen? It would be amazing if this non-pharma aid were to work for you now.

Let us know if you see the magnolias! :lol:

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Not much change, I went back on the D3 after 2 weeks of not taking anything. I was getting the same amount of hits but they were trending upward in length and severity a little. I did my bust over the weekend and had a bad day following witch is normal for me. I feel the LSD I took was a little weak so I will be on the lookout for a new batch of that. 

I have not yet tried the Zolmitriptan patch thing yet but need to do so soon as I have a appointment with them on Monday to go over how it worked. I just need to work up the courage, 20 minutes with nothing to abort other then the patch they gave me, It's going to be a great time if I have placebo! 

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I did lithium for several years - went from 2 episodes a year down to one, and the episode was shorter and less intense. This was several years ago, and after I found out I was allergic to verapamil. There were very few alternatives at the time, so I went with it, but I also believe that it harmed my kidneys long term - my eGFR hovers around 60 to this day -  at some point I tapered off to do a bust, and never went back. I no longer use triptans either - just some Stacker B12 energy shot (cheaper than 5 hr energy, available at WalMart) and oxygen, where I invested in a demand valve regulator, which I think works better, but is several hundred dollars (I use a welding regulator to go to 50 lpm, and the demand valve takes it to 40 lpm:

http://www.porterinstrument.com/product/dental/Porter-O-Two

I don't use the quick connect, but have it screwed into a welding regulator.

I have also been enjoying Reishi mushroom tea after my oxygen, with a little stevia, as the oxygen is very drying. Reishi is not a psychedelic, but I find it relaxing.

I've also had multiple occipital nerve blocks, temporal nerve blocks, botox - none of it ever really helped long term. The only nerve block I haven't tried is sphenopalatine, which creeps me out a bit, but I may get there eventually. I'm currently messing around with Aimovig and Ubrelvy. The beast broke thru the Aimovig 70mg which had me headache free for a year and a half, so I'm going to take the Ubrelvy at night for 10 nights straight to see if it breaks my episode, and follow that with the 140 mg dose of Aimovig. Had tried 240 of Emgality, after a dexamethasone taper, but it did nothing, and the HAs continued.

Edited by LennyC
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