Fabalicious

Hey Yall! OMG I read all your messages and you guys make me cry! i love you all so much! Thank you for your well wishes. and update on my condition, I had been feeling some chest pain and tightness for a while, it was starting to get a lot worse along with shortness of breath etc etc. Mentioned it to my doc (yes the hot one lol) He promptly sent me for the echo, which led to a stress echo , which i failed miserably. Then had a heart cath. Has anyone had one of these? the word SUCK does not even begin to cover it. But long story short....my long term over use of Imitrex (REALLY long term and taking about5 times the allowed dosage) weakened my heart...a lot. It also did some damage to the vascular structures. My own fault. I should h ave stayed within the recommended dosage...but when you having such frequent visits from the beast you tend to just want the pain to stop without worry for the consequences. So the doc talked with my wonderful family and said I need at LEAST 3 months of TOTAL rest. The heart cath showed a really weakened muscle that is not beating efficiently ( in the beginning I was passing out just walking around in the backyard) but after all the rest and BOREDOM I am slowly getting a little better day by day. The ban from the computer was a decision made by my youngest daughter ( whose new nickname is Griselda, she- beast of the Gulag) because she said that I get too excited about things I read or hear while online. They did let me get on my phone to check FB. ANYway, I am recovering...and I have been told that although I will never get back to normal, and will have to take things easy, I will be able to get off lockdown after my next doc appt in May. I cant wait! i miss you guys SO much! OK gotta log out now...I hear Griselda stirring upstairs and if she catches me ...lol...HUGS HUGS HUGS! and ALL my love! see you soon! ;D

Bob...you ROCK!!! 8-)

That is INCREDIBLE! Thank you for getting the word out!...and your puppy is SO cute! :

Nice! I am going to speak to my doc about this on my next appt! Wishing you continued success and HUGS and most of all pain free wishes!

I am having the same problem.....I think what I saw was maybe a picture of the article? But its on my FB page...and on the FB page of "the other guys"...if yall wanted to see it. It doesn't give a LOT of info just a general description of the condition and that there is no cure...I just thought it was awesome that we are even mentioned...much less #1...That is a good thing as far as getting the word out. HUGS! PFW for everyone! 8-)

It is an article in the Sun newspaper (UK) by Dr. Keith Hopcroft that is titled "10 Illnesses so Bad They Terrify Even Me". Cluster headaches are #1, ebola is #2...lol I deleted the link....am going to look for it elsewhere and see if my NON computer literate self can get it posted... :

I agree with Tangerine and J...I was pretty casual about CH too ...until I went chronic....puts a WHOLE new light on things.

Maybe we should move this to the another board? I don't know if anyone is seeing it......or maybe they just aren't as excited as I am about the prospect? :'(

it IS an awesome article! This site also has several other videos and articles about psylo and its many medical benifets, to a lot of things including CH. So nice to see people getting over their preconceived notions and waking up to natures way.

BAM 8-)

I wish I could help but I don't even speak english properly

C for me as well....do you have a 3am time slot? ;D

That IS a great article Mox! I am putting it on my FB account if you don't mind. Thinking such as this is much more productive than the ways we have been dealing with things in the past. Thank you! HUGS!!!!!! hoping you are PF!

http://shar.es/1bRijI I found this article on Vitamin D. Its pretty interesting all of the things that a deficiency can cause.

It also does not say if he is episodic or chronic, my money is going with episodic.. at least they DID talk to a doc and got a little of the word out ...even though its barely touched on...maybe SOME people reading it will do further research and learn about them a little more.

http://www.huffingtonpost.co.uk/2014/08/20/daniel-radcliffe-blood-pressure-cluster-headaches_n_5691530.html ;D

I had a very similar problem with my insurance, I ended up paying out of pocket for my Trex injections. The think I had to do was switch to Trex tablets. They are a LOT less expensive, and I talked with my pharmacy and there was a program they had that I could utilize (maybe through the state?) that took my script for 9 pills from $150 down to $45. This is how I survived the hell time. But please, think twice (or five) times before you get too dependent on the Trex. I know its relief from the pain that seems to never end, but it really does make the episode and the attacks last longer. I, like many many others on this site attribute the transition from episodic to chronic to the use of this drug. Getting off of this stuff is one of the most difficult and painful things I have ever done. The constant attacks and severity of the pain drains you both emotionally and physically (not to even mention what the Trex is doing to your body, I am STILL dealing with those issues) but it IS better using other methods of pain control that DON"T tear up your heart, DON'T tear up your vascular system, and DON'T tear up your digestive system. Like I said , I am not going to lie to you and tell you that its difficult. Difficult does not even begin to cover the saturation of suckiness that will be your life during the "kick out" time, but after its all said and done...its SO worth it. HUGS to you honey, many pain free wishes, and if you need help with anything, need to vent,, or have any questions...thats what we are here for. Take care and hope to talk with you soon!

Hey sweetie....sorry you have to be here. CH is a terrible thing to live with, but happy you had been finding some relief. You are saying your PCP(?) is treating your CH? Not a neuro headache specialist? And do you have an oxygen tank? Have you tried any other types of meds, Imitrex, Verapamil etc? You also stated that your pain never stops..(SO sorry) , how long have you been hurting? Please keep us informed. There are so many on this site with a LOT more knowledge than I have who will be chiming in..just getting some more info...HUGS and pain free wishes for you!

It has been said before but I am going to say it again...Y'all are incredible!

Agreed. Due to the stigma attached to MM, a lot of people would rather suffer than try it. (Whatever :) Your neighbor might be more open to the seeds. And they DO work, and they work well. I don't know how they would work for migraines, since I don't have those, but even Trex was originally intended for use with migraines, so stands to reason that the meds would work for either? maybe?

I know that with the decorative mulches they soak them in some type of insecticide to deter critters of all types...but never thought about a natural substance being a trigger. You have looked at weather patterns and such as well? I know some trees and shrubs DO put out some really strong substances that does trigger allergies. But we have been having some crazy weather stuff going on as well. Did't you say that your son gets them around the same time each year?

Hey Didg! I come from German lineage on my fathers side and American Indian on my mothers side. My dads side has no problems at all to spite the incredible amounts of abuse they put their bodies through, they have no major illnesses, and live about the normal amount of time for a human. My moms side of the family does have dementia as an inherited trait. They live forEVER, but all of them start to display symptoms of dementia around the age of 75, and it increasingly gets more severe until they pass, usually around the age of 95+. The only problem is that they live forever but by that time, they have no idea who anyone is, where they are, and seem to be living about 50 years in the past. I have done some research with my family on both sides and so far I am the only one of us with CH. Lucky me..

I love this idea and would be happy to volunteer my services to help in any way I am needed! HUGS!

Awesome!

I will do anything I can to help with anything you need me to. Just say the word. Where are we thinking of hosting this little shindig? No matter where we do it, someone is gonna have to drive....but as Texans, we are used to that. I would think that we need everyone who wants to come PM DD and we can pick a central spot? OMG this is SO cool!!! I am excited!!!!! [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif]