Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
Long time visitor, first time poster (Read 191 times)
Jayess
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 3
Gender: female
Long time visitor, first time poster
Apr 20th, 2022 at 9:03am
 
Back after four years of remission. As I type this I am currently deployed so I donít have much at my disposal when it comes to home remedies and whatnot.

Back story 33 female, I have had episodic CH since I was 19, finally diagnosed at 29.  I have seen my home doctor and he was absolutely no help at all. I told him of all my past cycles and he said that it was extremely rare for me to have. He immediately put me on oxygen and told me to come back the next day to see if I have another headache. Of course I had two more that night. He immediately said no I didnít have cluster headaches because ďthe oxygen should have helpedĒ. Heís the third doctor to dismiss me entirely and just gave me ibuprofen, even though I told him it didnít work. Finally, I saw a fourth doctor and she helped me so much and put me on sumatriptan, which I was only authorized nine pills in a 30 day period. So I had to pick and choose which days to take it, it was miserable. Then I came across this forum and tried the taurine, magnesium and shot gunning redbulls, which was the first time I have found relief during my cycles.

Since Iím not at home I donít have my CH kit that I keep at home. I wasnít expecting my cycle to start early this year. I ordered taurine and magnesium on amazon, but I canít remember what else I have in my kit and the doses that I gave myself during my last cycle.

TLDR;

Not home, not sure how much taurine and magnesium to take. What is too much? Since the start of this week everyday I've taken 3000mg taurine and 800mg magnesium every 12 hours.
What other suggestions does anyone else have?
I know the answers are somewhere in this forum, I just have limited resources and limited time due to where Iím at right now. I just really want some help while Iím out here.
Back to top
  
 
IP Logged
 
Hoppy
CH.com Alumnus
***
Offline


LAUGHTER IS THE BEST MEDICINE


Posts: 1887
Perth WA
Gender: male
Re: Long time visitor, first time poster
Reply #1 - Apr 20th, 2022 at 9:10pm
 
Hi Jayess, oxygen and sumatriptans are used to abort a CH, what you need is a preventative like verapamil, have a talk with your doctor about this treatment, or you could try the vitamin D regiment, lots of folk here are having success with this remedy in keeping the beast at bay, including myself, you can find all the information on this remedy listed under medications, treatments, therapies on the main page.

Cheers Hoppy
Back to top
« Last Edit: Apr 20th, 2022 at 9:15pm by Hoppy »  
 
IP Logged
 
AussieBrian
CH.com Hall of Famer
*****
Offline


CH - It's all in your
head!


Posts: 3818
Cairns, Qld, Australia
Gender: male
Re: Long time visitor, first time poster
Reply #2 - Apr 20th, 2022 at 11:28pm
 
G'day,† JS,† and the general opinion is that sumatripan tablets aren't much help with CH because they take so long work.† Favourite by far is sumatripan self-injectors and there's a few tips here on how to get 2 or even 3 goes out of one syringe which cuts costs down a long way.

The one thing your doctor got right was using oxygen but the way he went around it was a mess and shows his CH experience is very limited.† Have a look at the list of buttons down the left side of your screen for one marked† Oxygen Info† and this will offer all the good info collected here through years of practice by ClusterHeads.

We even have a special mask designed just for us and there's plenty of people here who can help you with the set-up.

Again,  the vitamin D regimen is proving very popular and effective as a preventative while being remarkably cheap and portable.

Please let us know how you're getting on because we care,

Brian down under.
Back to top
  

My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
IP Logged
 
Jayess
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 3
Gender: female
Re: Long time visitor, first time poster
Reply #3 - Apr 22nd, 2022 at 7:25am
 
All,

Amazing experience at the doctor today, honestly I had little to no hope. He was so understanding and listened to everything I had to say. He said since I have a CH at 0100 he will send an email to the night shift crew and have them put me on oxygen. He said there isn't enough oxygen here to do it every day but just until my verapamil starts working!! fingers crossed that this all works out!

Thank you for your help. I feel like I've been so alone on this journey.
Back to top
  
 
IP Logged
 
AussieBrian
CH.com Hall of Famer
*****
Offline


CH - It's all in your
head!


Posts: 3818
Cairns, Qld, Australia
Gender: male
Re: Long time visitor, first time poster
Reply #4 - Apr 22nd, 2022 at 8:05am
 
Verapamil is remarkably effective as a preventative but is very slow to start working  (a week or more)  which is why many doctors offer a prednisone taper which often gives good relief until the verapamil kicks in.



Back to top
  

My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
IP Logged
 
Jayess
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 3
Gender: female
Re: Long time visitor, first time poster
Reply #5 - Apr 30th, 2022 at 3:27pm
 
One week into verapamil I felt like it was working, I was attack free for three days, then the 4th day hit me like a ton of bricks. I was getting them at all random times of the night. From that day on I've only been getting one a day , but it seems like they last a little longer. The oxygen has been a miracle but the clinic here decided not to do 24 hour walkins anymore.
I'm going to be getting on amazon and ordering everything for the vitamin d treatment. I don't think I'll get it in time for this round but probably when I get my next episode in about four years I should be set to be cluster free.
Back to top
  
 
IP Logged
 
Traveller
CH.com Veteran
***
Offline




Posts: 137
Tampa, FL
Gender: male
Re: Long time visitor, first time poster
Reply #6 - May 1st, 2022 at 12:19am
 
Jayess - As noted above, It can take several days (perhaps more than a week) for Verapamil to stabilize in your system to full effect.† This is one reason it is often prescribed with a regimen of prednisone to help through the transition until Verapamil is at strength.

Also, if you are getting nighttime hits, you might give some thought to a sleep study to check for sleep apnea.† There is growing documentation of a link between CH and sleep apnea.† In my own case I was diagnosed with severe sleep apnea in 2016, and after starting CPAP therapy my Clusters have completely - 100% - disappeared.† Feel free to PM me if you would like more information.† Best of luck.
Back to top
« Last Edit: May 1st, 2022 at 12:21am by Traveller »  
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!