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Feeling Optimistic


EmpiresBurn
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Just got back from my Neurologist and upped my initial low dose of Verapamil from 120mg to 160mg along with being prescribed Prednisone for 3 weeks tapered down. So hopefully Verapamil/Prednisone combination works well as preventative as I'm currently not seeing any success at 120mg alone. 

Also switching from Sumatriptan 100mg oral to the Sumatriptan injections as an Abortive. 

Last but not least running insurance to see if approved for Emgality which would be once a month injection to fight CH. 

I feel pretty optimistic having a new neurologist that actually seems to understand and have experience with CH, and yes please before everyone jumps on the O2 being the best. I live in the US and that's just not happening at this current time I've gone down that road with 2 regular doctors and 3 Neurologist and 1 Headache specialist. It's currently not in the cards for me as an option. 

But I will keep updated on the progress of Emgality if approved along with the others. If anyone has experience with Emgality please let me know. 

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You will want to split your Imitrex injections.  They are (typically) 6mg, and all most people need is 2mg.  3 at most.  Some doctors will prescribe it in vials so you can measure your own doses, and there is a 4mg injector.  Here are instructions for splitting doses: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

You can see reported experiences with Emgality by typing Emgality into the search bar, top right of each page.  I'd say that for people reporting here, it generally hasn't been very effective, but keep in mind that's a very skewed sample because for the most part the reason people are here is because conventional things haven't worked for them.  If you can afford it, it's worth trying.

The prednisone is likely to stop your attacks.  That's unrelated to the verap.  Sometimes prednisone will end the cycle (or the cycle will end while the pred is being used); other times the attacks come back when the pred taper is ended or ending.  You can only do prednisone at most once a year.

I get where you are concerning prescribed O2.  But Imitrex is very expensive (particularly if you don't split injections) and the side effects are not great.  You do not want that as your primary abortive -- only for bad attacks. So you still might want to consider doing as many do and setting up a welding O2 system.  Maybe not for this cycle, I understand. Similarly, the D3 preventive regimen is better for you and is going to have less potential side effects than verap, let alone prednisone.  So please consider getting going on that at some point.

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5 hours ago, CHfather said:

You will want to split your Imitrex injections.  They are (typically) 6mg, and all most people need is 2mg.  3 at most.  Some doctors will prescribe it in vials so you can measure your own doses, and there is a 4mg injector.  Here are instructions for splitting doses: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

You can see reported experiences with Emgality by typing Emgality into the search bar, top right of each page.  I'd say that for people reporting here, it generally hasn't been very effective, but keep in mind that's a very skewed sample because for the most part the reason people are here is because conventional things haven't worked for them.  If you can afford it, it's worth trying.

The prednisone is likely to stop your attacks.  That's unrelated to the verap.  Sometimes prednisone will end the cycle (or the cycle will end while the pred is being used); other times the attacks come back when the pred taper is ended or ending.  You can only do prednisone at most once a year.

I get where you are concerning prescribed O2.  But Imitrex is very expensive (particularly if you don't split injections) and the side effects are not great.  You do not want that as your primary abortive -- only for bad attacks. So you still might want to consider doing as many do and setting up a welding O2 system.  Maybe not for this cycle, I understand. Similarly, the D3 preventive regimen is better for you and is going to have less potential side effects than verap, let alone prednisone.  So please consider getting going on that at some point.

I am currently looking at the D3 Regime. My concern is that I already have "slightly higher" Vitiman D levels and I am worried that taking the D3 Regime will run the risk of Vitamin D toxicity. 

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8 hours ago, EmpiresBurn said:

and yes please before everyone jumps on the O2 being the best. I live in the US and that's just not happening at this current time I've gone down that road with 2 regular doctors and 3 Neurologist and 1 Headache specialist. It's currently not in the cards for me as an option. 

You can always go gonzo and do the welding oxygen. The route I am about to take...

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17 hours ago, CHfather said:

So you still might want to consider doing as many do and setting up a welding O2 system.

My bad, missed this. I may have to hit you up once I'm ready. :)

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