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Showing content with the highest reputation on 07/04/2020 in Posts

  1. It truly sucks when you feel at wits end. Before things stabilized for me everything I tried was undisciplined and all over the place. Desperation makes you do things that are nonsensical cause you have to do something. If you are going to go into the neuro looking at conventional cares You might try for a CGRP inhibitor (at the correct dose for clusters) and O2. If you have been treatment resistant to D3 and other modalities its likely verapamil will be a disappointment. Busting is a scary notion but there is a lot to read and familiarize yourself with to reduce a potential unpleasant experience. Seeds would be another thing to consider. Psilocybin is being studied worldwide right now for treatment resistant depression and there is lots of good info about protocols and success. There are counselors trained in using the modalities together. Easier to find would be a ketamine clinic but because these are widely available please take care in selecting a provider so you get the needed post exposure integration. Keep at it and try to keep succinct notes so when you do talk to a provider you are not directed down a path you already have been.
    2 points
  2. Pay attention you are able to get the same amount of poop out (sorry for the language) you did before verapamil - there are probably lot of options for help in your pharmacy. Depending a bit of your diet but long term created constipation can lead to diverticulitis ("bubbles" in your bowels manifest as pain) - familiar to us in the verapamil family - and that's a whole new problem of it's own. In Finland there's a great product called "Vi-Siblin" (Google "Ispagula Psyllium") which usually helps verapamil users even when more ordinary products do not.
    1 point
  3. When I start typing I often feel like I am spoiling something when the vibe in the conversation has been good before I entered. I personally would recommend Verapamil to no one. I have been actively (daily) working in the online communities for 10 years now. I don't know anyone for whom verapamil would have worked for 10, there are few who can stay on it for 5 years. Even if the response stays there are cardiac problems, detectable or not detectable. I would say if you are in relatively good health and have not tried verapamil, please keep it that way. I was on 480mg almost for a decade, 720mg for years and in the end 960mg and almost 1200mg. I regret every pill of it. I too started getting relief on my cycles, especially night hits. For me it was Vitamin D I was taking alongside verapamil. But I am not this against it because of my personal experience but because I admin finnish patient community and there is nothing in patient experiences - especially in long term - that would look good for verapamil. And when high dose patients get problems it's too late. Steroids (prednisolone) are more dangerous than verapamil. They abort the first few cycles and doctors have limits on the dosages you can get as tablets. When the highest dosage steroid course does not abort a cycle anymore, usually the steroids have altered your cluster headache to hell of a lot worse it was before them. At this point some get steroids as IV. Again, not against these either based on my own experience (though I have lots) but they create nothing but tragedy if you follow same set of patients for 10 years. Oxygen, Anti-inflammatory regimen and busting are giving nothing but great results though, in long term, in our community.
    1 point
  4. Zomig works wonders for me but it is a double edged sword, it stops the attack but it also extends the cycle. For me the only way to end the cycle is to get off the Zomig for at least 7 days or I am back in another cycle. I try to only loose Zomig when I am on vacation so I can enjoy my time while I am there and not ruin it for my wife.
    1 point
  5. The triptan medications are labeled not for prevention but my experience agrees with yours....taking an oral or long acting version will allow you to get sleep. There is a trade off though...you are likely to start getting rebound headaches from using the triptan regularly. You may also “time shift” the occurrence of the headache. Triptan use can also extend a cycle. Being awaken with a full blown cluster headache is very characteristic of cluster headaches and often how they initially present. Hopefully you can get some O2 to abort and lim it reliance on triptans. Sooner or later you will pay a price for daily use and its not pretty.
    1 point
  6. I’m actually having crazy side effects to verapamil. I’m having stomach pains like what come with diarrhea but I’m constipated so nothing is happening :(Verapmil is working so I don’t want to give up on it
    0 points
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