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Showing content with the highest reputation since 06/27/2020 in Posts

  1. 3 points
    I wish I had answers for you Kat! It is hard with the presentation of your symptoms and such to say 'Oh yea, those are CH.' I just don't have a good answer to that one. The ramp-up at the same time of year does sound like it of course. CCH's have that occur. And some people begin with not so 'typical' CH, only to have it become more obviously CH over time. On the other hand, because there is one, you are on the Extended Release Verap. The short acting works better. As in you take it three times a day, not twice. Patients have a better response to the short acting version. Can you get your doctor to change that so that you can try it? And 320mg/day is a fairly low dose. So, you could get the short acting and go a bit higher to see if that does a better job. Just make sure that your BP is okay with a higher dose. You are taking the full D3 Regimen, right? The vitamins all work together. Have you added Benadryl? Sorry, I don't recall. Hugs!!!
  2. 3 points
    ...one of the problems with undiagnosed yet treated conditions is how insurance companies will or most likely WON'T cover the treatments or procedures you need...you may be fine with current but run into problems with next...it does sound like your PCP is treating appropriately tho the vison issue sounds more migraine than CH... .....many folks find that immediate release verapamil is superior to extended release.... put that in your consideration file and note that 360 is a somewhat low dose....480 seems to be the sweet spot and some go much higher as needed.... .....what type of O2 mask and flow do you use...a specialized clustermask and 15-25 lpm can make a huge difference....adjustments in body position may help...I found sitting at a 45 degree forward body lean with head down "looking at feet" to be optimal...YMMV best jonathan
  3. 2 points
    Many find that looking down toward your feet helps. If you are a 'rocker', this seems to come naturally. I tend to rock and stare at the floor with unfocused eyes. Just me perhaps. When you first begin, exhale with force - add a crunch at the end. This gets repeated for several breaths. Push out the CO2 and suck in the O2 deep. Hold a few seconds and repeat. Fast, shallow breathing is usually not the fastest or best way to abort. You want that CO2 gone ASAP. How fast you go just depends on you and how your head responds. I will start out fast and hard, then let up till I hit a sweet spot - one where I notice a significant reduction in pain. I will repeat that pattern for that hit. For me, it varies as to the time to find the 'spot' that is going to work with each hit. In short order, you will know what works for you. I use the tube as I cannot stand the mask on my face. If I see that the bag is filling too fast, I turn down the flow. I may go up or down a few times in a hit. Pain worsens, dial it back up and get to work. Pain lessens, begin to relax and go with the flow. I vary the flow from 25lpm to 5lpm. My post is at a rate that matches my relaxed breathing post hit. Often, if I am tired, it will be at 5LPM or lower. CHF will likely be along to direct you to a paper on how to use your O2. I haven't time atm to find it. But, the above will get you going. To conserve, adjust the flow on your regulator to match your breathing. That is all. To make you visit as short as possible, do the forceful exhale and deep inhale. If the bag is filling too fast, turn the dial down till you catch up. The focused technique is important to me. I usually get a good abort in about 5 minutes and then 5 minutes post. For a really bad one or one where I had to wait to hit the O2. that time can be doubled. If you can, grab some caffeine on your way and chug it. It often helps speed the abort. Not sure if you use can caffeine or not, but if you can, it helps. Which conserves your O2.
  4. 2 points
    I would agree with Rod. Pred makes me hyper. Wide open for hours on end. And on occasion, I feel like my head and behind are no longer wired together!! Are you taking all your Verap at the same time, not in two doses? That is not the norm. Not the way it is meant to be taken either. Does your Doctor approve of taking both at once? Just wondering. In addition, the short acting is better for CHer's, not the Extended Release. Have you checked your blood pressure an hour after taking the verap? You really should. It will drop with the verap and that will make you dizzy. And if you are taking both at once, that could be the issue.
  5. 2 points
    I wouldn't stop the verapamil until 2 weeks after the prednisone. Usually I get hit 1 day after the prednisone taper is over. I would also associate your disconnect with the prednisone and not the verapamil.
  6. 2 points
    @dehabel multivitams contain calcium and Batch suggests taking it 8 hours apart from verapamil since it’s a calcium channel blocker
  7. 1 point
  8. 1 point
    Verapamil is a difficult drug in any context. As a calcium channel blocker it was originally used as an anti-hypertensive and in some irregular heart rhythms. It was never a very good blood pressure medication and the number of abnormal rhythms it contributed to were worse that those it was intended to treat. When Beta blockers gained popularity in preventing migraines calcium channel blockers were also tried but with less success. Verapamil shows up as the number one phama drug to prevent attacks but that recommendation has surprisingly little evidence to support its use and effectiveness. {I have attached a link to a(nice article at the bottom of this post) My personal experience was taking 1200mg a day and getting so constipated even if it worked I'm not sure it would have been worth it. Over the years one gets a general feel how fellow cluster heads are doing with conventional treatment. This of course is tempered by the reality most folks enjoying successful treatment don't stick around or follow up. I never ever get a YES this stuff works impression. Doses are often too small, the length of use wasnt enough or the side effects not tolerated. My opinion is it is very much a something to try drug but won't be too hopeful. Steroids can be very helpful but those too are often under-dosed , taken long enough or transitioned to something that might give long term relief. All these things are super hard because no doctor who doesn't deal with this curse can appreciate the exquisite, intense and debilitating pain this condition offers. Since for most the attacks are episodic there is never a deliberate treatment plan worked out. In the end its up to the individual to muster all their resources and direct care with an understanding caregiver to deal with this horror. https://americanheadachesociety.org/news/verapamil-cluster-headache/
  9. 1 point
    For the last year, I have just done the Benadryl. In the past, during cycle, I did both. Now, with the D3 and a bit of maintenance, I have not had a cycle in over two years. Not to say that I don't get the occasional break-through or random hits, I do. But they are milder and usually a one of, not the four brutal hits that I was accustomed to in cycle. Life is good.
  10. 1 point
    Melatonin makes it worse for me and a few others here.
  11. 1 point
    @spiny so I skipped the melatonin last night and just did Benadryl and skipped my 6 am headache. I woke up with one a few days and not today! Maybe the melatonin was making it worse? I will continue experimenting and let you know. Do you have success with melatonin? Kat
  12. 1 point
    I assume you were taken an ECG before verapamil was started and have heart monitoring scheduled. You need an ECG after discontinuing it so you can't just be on and off it when you want to.
  13. 1 point
    ...be aware of and prepared for the beast to reappear post steroid taper...while it can break a cycle, the usual purpose is to buy a temporary( 10-14 day) reprieve until a prevent (like verapamil and others) kicks in....
  14. 1 point
    I think one of the side effects is dizziness. I’ve heard verapamilcan be very helpful if you give it a chance and let it work a bit. If you can get past the side effects I’m sure it’s a great drug for clusters
  15. 1 point
    Taking it twice a day means it is extended release. The regular one you take three times a day. Your script likely says 'ER' on it. Not sure why, but the old fast acting works better for us.
  16. 1 point
    Yes. It took about 2 years and I had to do all the work. The lawyer didn't expect me to win and just took the fee, and the administrative court judge acted like he was doing me a favor. ... Oh I should note that this is in the U.S.
  17. 1 point
    @Tom1956 welcome to the forum. Sorry to hear that. Was it difficult getting disability pension? Kat
  18. 1 point
    It's hard to figure weight on YouTube comments with so many following The channel. No one in the lynch mob on social media has carried this out for 3 weeks, many have not tried at all. I too was thinking about thought processes and distraction - and also thinking something like this might have worked on me when my clusters began, before they were amplified with pharmaceuticals. I have done severe self injuring but never this sort of a "regime". I wanna hug this man anyway
  19. 1 point
    ....the ending about using as a prevent is definitely a "yeah right" moment... ...most of it looks like stuff I've done...tho a LOT more violently and near involuntarily.... ....what does intrigue me is the possibility that a regimented plan involves a thought process and distraction that most definitely could be helpful...the few times I was able to put my mind somewheres else were remarkably successful........it was too hard to replicate consistently
  20. 1 point
    I know it's been mentioned above, but anyone considering quercetin - it's doubly important to speak with your doc if you're on verapamil. Below is from WebMD: Medications changed by the liver (Cytochrome P450 2C8 (CYP2C8) substrates) interacts with QUERCETIN Some medications are changed and broken down by the liver. Quercetin might decrease how quickly the liver breaks down some medications. Taking quercetin along with these medications that are changed by the liver might increase the effects and side effects of your medication. Before taking quercetin talk to your healthcare provider if you take any medications that are changed by the liver.<br><nb>Some medications that are changed by the liver include paclitaxel (Taxol), rosiglitazone (Avandia), amiodarone (Cordarone), docetaxel (Taxotere), repaglinide (Prandin), verapamil (Calan, Isoptin, Verelan), and others.
  21. 1 point
    Penises are not as dangerous, are they ? " There are things known and there are things unknownand in between are The Doors " - Jim Morrison
  22. 1 point
  23. 0 points
    Thank you! I am about to stop my verapamil I hate it!
  24. 0 points
    My diagnosis from a neurologist was chronic paroxysmal hemicrania, atypical. I don't have the red eye or tearing. Indomethacin is somewhat successful in treatment, but headaches still sneak in most days. So I don't have clusters, I have chronic, cluster-type headaches, perhaps 9 days out of 10. Most headaches are fairly short in duration, around 10 minutes. But after them, my brain doesn't work well. Verapamil was tried, unsuccessfully. Mushrooms have no effect, medicinal or psychoactive. probably because I take Effexxor. I also need to take a benzo and trazodone, an SSRI, for sleep. I've tried to taper down on these meds, but it's impossible for me to do so without horrendous side effects. I'm going to try out some 100% oxygen in a can to see if that might help during the attack. Otherwise, 10 years in, I just live with them, on disability pension.
  25. 0 points
    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
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