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kat_92

Another sleepless night

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I’m sad to report that I had episodes from 4 pm yesterday til about 3 am. All lasting about 1-2 hours each. I am at my wits end. I feel like nothing is working. I am desperate. I feel like I should be successful with the D3 regimen I’ve been on it non stop for 1 year. I’ve even added Benadryl to the mix due to seasonal allergies. I have an appointment with my neurologist on Wednesday but I don’t even know what I’m gonna ask him for. Immediate release verapamil I guess :/ I am still too scared to bust. I have depression and I am just scared it will go poorly. Almost because I feel like MM is my last option, if it doesn’t work I will feel so helpless. Just wanting to vent a bit. Stay safe today 

Kat 

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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.

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Kat, I am so sorry. This pain is so much.  I am assuming you did the steroids?  What about Emgality?  Y soell is over and I do not know whether it was the D3, the steroids, or end of cycle.   Hopefully, he can give you something on Weds. fingers crossed for you. 
 

Chrissy 

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@dehabel 

steroids are only a temporary fix for me. I have heard mixed things about emgality for clusters. More negative actually so I wouldn’t want to try it. Also, it doesn’t get covered by my insurance. I don’t want to pay a lot of money for something that might make it worse. My next step is busting with MM. 

thanks for reaching out 

Kat 

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Hang in there kat I've been in cycle since April 22nd. If this was easy we wouldn't be here. You got this

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@Rod H hey thanks for the words of encouragement. Confirming a chronic diagnosis has been a depressing pill to swallow. My next step is immediate release verapamil, if not I’ll bust with MM. I have a schedule all set up. I actually began the loading dose 3 days ago of the d3 regimen because I figured what the heck. Maybe something got out of wack. And low and behold, I’ve had only one mild attack last night and only shaddows today 

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Never surrender to the beast.

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It very well may be the D3 that is working for you now. :) 

Batch often recommends returning to a loading dose if you are not getting relief. Awesome that it is working for you!!

Occasionally I will forget my D3 vitamins. I am fine if I miss only one day. If I miss two in a row, it is pain City. So, I know that for me, the D3 is pretty much good magic!! 

Keep us posted Kat! It would be so lovely to read that you have been a day or three with no hits. 

Yes, the diagnosis of CH is rather devastating. When you search and find out what it is, you sort of want to throw up because the outlook has been so bleak! But times are changing and hopefully the new research will mean better treatment for all. 

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@spiny thanks for the encouraging words.  So experiment time, I did NOT take the d3-50 today and boom. I’ve had heavy HEAVY shadows all day...now my only concern is that health wise, you cannot be on that many mg of d3 every single day. So I am not sure what to do. Seems I only get relief if I take one of them every day. 

Also I met with my neurologist today and he gave me 2 samples of emgality. I think I will steer clear of them for now. I have not read promising reviews from cluster heads. It’s great it works so well for migraines though. Ugh wish me luck today stinks 

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Hugs and best of luck for today and others too!! 

Have you had your D3 levels checked? That would give you an idea of how low you are at this time. No, you cannot take 50k daily without keeping up a rigorous testing of your D levels. How much are you taking on the days you don't take the 50k dose? Any? 

I take 10k per day, every day. In the past I have been able to go down to 5k due to sun exposure in summer. I am not doing that this year as I am not out in it as much due to heat intolerance. At the 10k /per day, my D3 stays at 100 -105. I don't recall the units at the moment. My PCP knows that I supplement heavily and has no issue with my levels being a bit high since my other labs are good. If I go without it for a couple of days, I get hit!  

 

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I don’t take any I normally take the d3-50 water soluble once per week. This is throughout the year. But right now, I started the loading dose again and it’s giving me so much relief, but I can’t take that every day. I have an appointment with my general care doc to get bloodwork and such in a few weeks 

Kat

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1 hour ago, kat_92 said:

Also I met with my neurologist today and he gave me 2 samples of emgality. I think I will steer clear of them for now. I have not read promising reviews from cluster heads.

kat_', you might be making a wise and perfectly good decision about this. But do keep in mind that here and at other CH sites, people are there because things haven't worked for them. A few people have showed up here to say that Emgality, Aimovig, or some other medication of that type has helped them, but for the most part, people who find relief from something are not likely to be here, so the comments are skewed toward the negative, which might not represent the whole picture.  

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