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Showing content with the highest reputation on 02/17/2022 in all areas

  1. 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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  2. 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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  3. Dr. Lawrence Robbins of the Robbins headache clinic wrote this piece about a year ago. He has been one of the biggest prescribers of these drugs and at this point is saying that "Some headache providers feel that the CGRP monoclonals are safe and adverse effects are infrequently encountered. Others believe, as I do, that the mAbs result in a number of deleterious effects." He also said "After assessing the various post-approval lines of evidence, there are signals that the following adverse effects may result from the use of CGRP monoclonals: constipation, anxiety, injection site reactions, weight gain or loss, worsening hypertension, increased headache, insomnia, depression, hair loss, joint pain, fatigue, irritability, muscle pain or cramps, nausea, rash, sexual dysfunction, and tachycardia (or other heart irregularities). Most likely there are others as well. In addition, there have been cases of reversible cerebral vasoconstriction syndrome and stroke. Angina and myocardial infarction have also been reported. Thomas Moore, a leading expert in the acquisition of adverse effects of drugs, published a review of the CGRP monoclonals in the online journal QuarterWatch. QuarterWatch utilizes various resources, including FDA reports and published post-approval studies. (5) The report cites the “sheer number of case reports,” and concludes that “…it is likely that adverse effects of this migraine preventive were underestimated in the clinical trials.” These meds have now caused at least 40,000 serious adverse events and the number of people that I have talked to that completely regret taking this medication is huge. Some of them are still suffering long term effects from it. And for what it's worth, I agree with Dr. Robbins. If we can have a medication that has this many bad side effects but prescribers still end up convinced that the worst effects are mild constipation, than our system is broken. Once again, cluster headache patients will need to rely on each other to keep ourselves safe. https://southernpainsociety.org/adverse-effects-and-clinical-trials-the-system-is-broken/ -Ricardo
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