Weening off scripts without doc help.

[Vickle]

Needing advice and help,

I am going to bust.  My first choice is going to go the mushroom route.  I would prefer to grow my own.

I am waiting for my neuro that i got from the old ouch site.  He's aware of busting and versed in CH.  But It's been months and probably will be months more before I see him.  I've seen enough docs now to be okay to wait for him.

In the meantime, my two docs will NOT work with me to come off my meds.  I've been slowly lowering doses on my own anyway with the exception of two.  Can I come off my drugs safely on my own???  My CH is ramping and I'm scared of where it's going.  Chronic already and now the K levels are getting higher with every one.  Busting I feel is my only option. 

Drugs on board at the moment are: Lamotragine (lamactil), Lithium, Clonazapam, Verapamil, Topomax. 

I've tried D3 and a buffet of vitamins and suppliments.  But it's expensive and can't sustain both meds and vitamins.  So i've stayed with D3 but not working either.

Anyone have experience weening off meds without doc help?

[ThatHurtsMyHead]

Vickle,

I'm unsure what reason you're taking the Lamotragine, but most people on that, might need to stay on it. Also I'm unsure of the Lithium wean process.  I've read once upon a time.  It can be tricky to get off, but that's been years.  Coming off the others could leave you in a bad spot.  Sorry I'm not helping, but those are some pretty stout drugs.

Do you have O2?  It's the #1 recommended abortive.

PFW,

Jeff

[MoxieGirl]

Hi Vickie,

I was on Topiramate (Topomax) this time last year. 450mg a day, and it had stopped working (again). I knew Busting was my only option, and had to get off the T asap.

I have the sort of relationship with my doctor, that I tell her what I want to do, and she gives me advice on the best way of doing it. Or, I tell her what I DID, and she does her best to support me and advise. me. This is of course after I've done lots of research online.

Anyway, so I had started coming off Topiramate before I told my doc, and I mentioned to her about this site, and what I was planning.

At first, I started reducing T at 25mg a week, the same rate it was increased. But this was going to be too slow, I am chronic, and I needed to bust soon. So I increased it to 25mg every 3 days.

It was 2 months of Hell. My mood was all over the place, but mostly VERY low. I had almost coninual suicidal thoughts, and basically just not a happy camper. BUT I knew it was the drugs, and I put a date in my calendar for a week or so after I'd be off Topiramate that I promised myself I would not act on any thoughts I had till then. I knew I wouldn't be thinking straight till that date.

I did it. I got through it, but I wouldn't recommend it. And busting is helping more than anything else I've ever tried.

I don't know about any of the other meds you are on, Jeff's advise seems sound though. I know some of them are quite strong. Have you done a Google search on coming off those drugs? Might find something useful.

I trust my doctor, but only because I have cultivated a good relationship with her over years. But still, I don't trust doctor prescribed drugs, and love the fact that I'm growing my own solution to clusters and migraines, and that it is 1000 times better than anything I've ever been prescribed.

A thought on growing your own mushrooms. My first crop failed completely, my second crop produced about 5 doses, and was a small crop. I just, last night, 'birthed' my third crop, and I have high hopes for this one being a much larger crop. So, be prepared that it might take a little while to grow your own crop if you haven't done it before. It might give you something to do while your coming down off all these meds.  You can always freeze the harvest and save it for when your drug free.

Wishing you all the best,

Moxie

[Vickle]

Thanks Jeff and Moxie,

The Lamotragine was precribed for suspected Sunct headaches.  Same with everything I take with the exception of the clonazapam.  That was prescriped to help treat PTSD symptoms of being chronic for so long (elevated heart rate, panic attacks middle of the night etc...)

I have managed to ween myself down to pretty low dosages on all meds, but verapmil.  Topomax is only at 25mg a day now, lithium 300 mg a day, lamotragine is 50 and climbing (but I will refuse), Verapamil is at 320 and climbing (but I will refuse)

Thanks for all you feedback.

[Bejeeber]

....the clonazapam.  That was prescriped to help treat PTSD symptoms of being chronic for so long...

I bet if you bust with mushrooms you'll find them to be extremely effective for treating the PTSD, as others including myself have.  8-)

If it was me weaning off meds I suppose I'd be trying to research the most reliable medical info about how it's ordinarily done for each drug, and what withdrawal or other symptoms to look out for.

In fact I have weaned off and even ON (not recommending the ON part!) CH meds without doctor supervision. I think the only 2 I've been on that you mentioned are lithium and verapamil, although I was on such heavy drug cocktails at one time I don't remember anymore all of the drugs involved.

Plus as Jeff said the high flow 100% O2 (often with a caffeine and taurine loaded energy drink for an extra push) has been a Godsend for many CH'ers for aborting CH attacks while detoxing from meds and preparing to bust. I sure hope the O2 will do the same for you, and then down the line we'll be reading reports of your busting success! 

[CHfather]

Vickle, assuming that you can get off those meds sufficiently to bust (and we are increasingly hearing of people who have success busting while on verapamil, though probably at lower doses than yours), there's still the matter of growing your mushrooms.  If you can successfully do that quickly enough, the timing might be great, but if you're ready to bust and you don't have home-grown mushrooms, are you considering other options, such as RC (rivea corymbosa) seeds?  These seeds work very well for many people, including people with chronic CH.  You can read more about them here:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

And, to be sure you're aware of at least some of the potential interactions between your meds and busting, you'd want to look over this file, if you haven't already: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731

As Jeebs says, I'd also recommend a google search such as [discontinuing lithium], to be sure you have this process well in hand. (A warning: When lithium has been used to treat CH, discontinuing it has sometimes led to fairly severe rebound "headaches.")