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Newbie13

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Posts posted by Newbie13

  1. On 10/18/2019 at 10:30 PM, Dana129 said:

    I couldn’t agree more, if there is one thing cluster headaches has taught me, it’s to make the most of every moment you have and to not waste time, life is short enough as it is for people without cluster headaches, it’s damn well even shorter when you’re a ch’r, read a quote that said “life happens between cycles” hit me hard

    I third that- and makes me have more grace for people moving slowing in front of me, taking an extra second to respond, or seeming distracted... Man, I am judgemental! This has been a reality check for sure.

  2. 4 minutes ago, spiny said:

    It lowers your blood pressure. That can be too much. What is your BP currently? 240 per day lowered mine to 80/60 at times. Needless to say, I quit taking it. I could not take enough to help. When it gets too low, I get very fatigued.

    I have good BP normally, and sticking around 107/65 on the verap. I was hoping the new meds might help with the fatigue (been dealing with that since the onset 7 weeks ago). 

     

    Thank you for sharing your experience! 

  3. 2 minutes ago, ChrisK said:

    Hey Newbie,  I take 240MG"s of Verap for blood pressure on a daily basis,  once in a cycle it goes to 240 twice a day.  This is enough to calm the beast. I also do the D3 regemin as Batch recommends.  as soon as that kicks in,   about ten days I cut back on the verap.   Might give that a try.

    I'm not sure if the fatigue is from the meds or the cycle - that's definitely something I can try. Do you normally have fatigue like that during/after a cycle?

  4. Hi all, 

    I mentioned before that I'm experiencing my first cluster cycle, pain free for 6 days thanks to pred, ramping up on verap. 

    I feel horribly drained- both physically and cognitively. It takes everything I've got to do a normal work day. Is this normal during pain free periods? Assuming that this cycle ends, how long does it take to feel normal again? I haven't been able to do anything more physical than a walk for almost 2 months.

    Also, I changed my SSRI from celexa to Prozac 3 months ago. Has anyone heard of this leading to a first cluster cycle?

  5. 8 minutes ago, MoxieGirl said:

     

    Do you drink alcohol? For a lot of people it triggers a cluster attack (not everyone though). But, I do know some people who'll have a drink a week or so after they think their cycle is ended to test it. Also a good way to know if it's starting. 

     

    Hi @MoxieGirl - thank you for the welcome! I appreciate you sharing your experience, I completely relate to the sun/moon analogy and will try it out!

    I typically drink 5-6 drinks a week (usually weekends) but stopped once I read about it on this forum. Interesting that it can be used to gauge whether the cycle has ended - I'll try that out once I get further along. Right now I'm scared to touch the stuff at the moment, as I'm sure others can relate... 

    I'm so encouraged by this forum, and happy to know that there is a community that gets it... Though I hate that we have to 'get it' at all. 

  6. 42 minutes ago, spiny said:

    What dose of Verap are you taking now? Two or three times a day? Chers can go pretty high on that stuff. Your BP may be a limiting factor. 

    Yes, that last day or two of Pred often finds the beast rising again. It sucks! Hopefully your Verap kicks in soon. 

    40mg 3x per day for the next few days, then up to 80mg 3x for 3 months assuming I can tolerate it. I have low BP generally so keeping a close eye on it.

    I had a painless awakening this morning - it was such a weird feeling. Trying to describe this to loved ones is so strange. My heart goes out to everyone who has dealt with this for years... holy crap it's bizarre. 

    • Like 1
  7. 7 minutes ago, spiny said:

    While sorry that you have CH, we are very glad that you found us. 

    Read and ask as many questions as you can or care to. 

    By reading the Forum, I think you have some good background info for your Neuro visit. Like Verap is the most often given daily med for CH. It lowers blood pressure. And you want the short acting, NOT extended release formula. It just works better. And you will want to keep an eye on your BP if you increase the dose. EKG's are often done with an increase in dose. Need to keep an eye on cardiac function.

    Often you will be given a Prednisone Taper Pack to bring relief while the Verapamil gets into your system. While a miracle drug in terms of pain relief for most, it cannot be taken long term due to joint damage. A short burst here and there is about all that your can body handle without risking damaged hips.

    Most other drugs are considered second tier. Not the best to use and often 'added on' by some neuros. If you are offered Imitrex, you want the injections. Some get by with nasal spray, but it does not work as fast as the injection. Pills are about worthless due to the time it takes for them to work.

    Take the O2 information with you too! Not all are up to date on how to use it and when to use it. They normally do not tell you how to use it, but for that you have us. :)  CHF is the O2 pro when it comes to covering the subject! 

    And read up on the D3 Regimen. It is awesome for many sufferers. Lowers pain and slows ramp up to allow a better abort if you hit your O2. It is all good for you vitamins. A blood test for a baseline of your D levels and such is stressed when you first begin the regimen. Some start the vitamins and get tested a bit later due to doctors and such. We tend to have low D levels when in cycle or even year round for some. This regimen has really helped a lot of CHers. Some go completely pain free with that alone! 

    ATB!!

     

    Your reply to CHF just popped! Sounds like you have your ducks lining up nicely!!! ;) 

    @spiny - thank you, really appreciate this info. The more I hear/read, the more faith I have in my neuro (which is so encouraging). On Prednisone and pain is gone, beginning to taper down yesterday and noticed some shadow pain .. hoping the verap will do it's job as I decrease the pred. 

     

    Question - how do I know if a cycle is ending? Because of the sinus diagnosis, I was on Prednisone twice for a few days at a time, and pain came back with a vengeance after the last dose each time. I'm nervous that the same thing will happen with this round.

    • Like 1
  8. Thank you @CHFather, oxygen was the first thing my neurologist recommended, and I've got an order in process. Thankfully she seems to be right in line with what I've seen recommended on here - she even mentioned the vitamin D3 regimine once I get my blood test results. 

    • Like 1
  9. Hello Cluster world, I'm new here. Currently eperiencing my first cycle (28yo female), misdiagnosed for 4 weeks as sinus headache, getting into a neurologist before December due to a cancellation. I've had migraines for 15 years but wow... This is a whole new level. I thought I was losing my mind, the pain didn't seem real or the patterns logical... Anyways, I wanted to say thank you all for sharing your stories and insights. I've been digging into the forum and I feel so encouraged by this community. I'm terrified and processing this new reality, but it helps to read about everyone's experiences, and know I'm not alone. Thank you all!

    • Like 1
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