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jadedgazer
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This isn't life threatening, just life altering
 
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Newish-Returning Member
« on: Nov 22nd, 2003, 2:45pm » |
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I don't know if you all remember me, I think my name on here used to be Sweet Landings. Too many meds since then and too many switched dx's.
But I think we have it all figured out now. Key word here being "think". First, they thought I had TN, then they thought it was CH, then they thought it was CPH, now it is supposed to be Chronic Migraine-Cluster Syndrome. Which to my understanding is Cluster headaches with migraine type symptoms mixed in.
Anyway, it has been virtually hell. Some of the meds over the past year or so have kind of worked for a while. Topomax being the most effective for the longest, but never stopped the ha's completely. None of the meds ever have. Seems that for me, whatever I take sort of works for a period of time and then stops working. I, always however, have breakthroughs 3-4 times a week. These breakthoughs range on the kip scale between a 7-8.
After reaching this new conclusion this past Tuesday, my neuro has decided to give my body a break from the Topomax after a year of it. We are now going to try Lamictal. Also trying a cocktail of Naproxen, Metoclopramide & caffiene pills and finally O2! Yes, I finally get oxygen! About damn time! I am so excited! It will be arriving Monday.
Since we have cut the Topomax by 100mg, I have gone haywire. I was up to 400mg daily but it was causing some detrimental side effects for me, kidney stones and some other not so great stuff. Plus after a year of it, I am tired of being so dingy...lol. Until we build up the Lamictal, I suppose I will have to deal with the ha's as best I can. Plus the sleepiness during the day is annoying, although the beast won't let me sleep much at night.
I will be combing the archives as my head allows for any and all info about this odd strain of CH. I have found some on the web.
I hope you will all allow me to return. I left before because I felt like I wasn't part of the group with the dx I had at the time. Maybe they got it right this time. Who the hell knows. All I know is that my damn head hurts like hell every day and every night and you are the only people who have a clue as to what I am talking about.
Thanks for listening.
Jackie ~ jadedgazer
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Jackie S.
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jadedgazer
New Board Veteran
This isn't life threatening, just life altering
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Posts: 146
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Re: Newish-Returning Member
« Reply #1 on: Nov 22nd, 2003, 4:15pm » |
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Just a note:
For anyone who thinks that maybe Migraine-Cluster Syndrome is bull@%*#...
Here is a link that give the most credible and understandable definition that I can find.. www.sbce.med.br/resumo~2.doc
Also, I am treated at the OU Health Sciences Center Neurology Dept. in Oklahoma City, Oklahoma by a team of Neurolgists there. I was referred there by the VA Hospital. I am not seeing a quack.
Maybe this dx isn't exaclty accurate but we are getting closer all the time. At least I feel like we are anyway.
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Jackie S.
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BobG
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Re: Newish-Returning Member
« Reply #2 on: Nov 22nd, 2003, 4:35pm » |
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Welcome back Jackie.
I don't think anyone doubts the CH with migraine combination. Many folks here suffer from both.
Stick around this time.
Please.
Some here would say "grab an oar and help us row".
I thinks that's crap. I say
"Grab a cab, the fare is on you"
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Stay stressed. Never relax. Never sleep. Ever.
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Little Deb
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Please SPAY and NEUTER all dogs, cats and idiots!
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Re: Newish-Returning Member
« Reply #3 on: Nov 22nd, 2003, 7:58pm » |
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Welcome back Jackie, and this time stay.
You have found a great group of people who care and understand.
LD
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Adopt a shelter pet!
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pubgirl
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Re: Newish-Returning Member
« Reply #4 on: Nov 22nd, 2003, 8:03pm » |
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Hi Jackie
Sorry you are having such a tough time.
I'm not arguing, I get both! Episodic CH with migraines in between. At least it isn't chronic CH though, so I feel almost lucky when I visit here and hear stories like yours.
Wendy
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: Newish-Returning Member
« Reply #5 on: Nov 24th, 2003, 7:21am » |
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Hi Jackie,
welcome back! 
So sorry to hear that you're having hard time. 
But that's when ch.com is a great place to be! 
Best wishes & PFdays,
sandie99
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Mr. Happy
CH.com Alumnus
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If I can do it, it ain't art.
   
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Newish is......
« Reply #6 on: Nov 24th, 2003, 8:02am » |
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on Nov 22nd, 2003, 4:35pm, BobG wrote:| I don't think anyone doubts the CH with migraine combination. Many folks here suffer from both. |
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Suffering from both, neither, other and more:
Errrrrr.......you don't _look_ Newish,
RJ
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May those who don't want any
Have memories of never getting any.
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Paigelle
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Re: Newish-Returning Member
« Reply #7 on: Nov 24th, 2003, 8:08am » |
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I have CH and migraines. Sometimes I wish I could just buy a new head and start all over.
There is nothing worse than being hit off and on all night and then getting a migraine in the middle of the damn day!
Glad you are here, remember misery loves company.
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jadedgazer
New Board Veteran
This isn't life threatening, just life altering
Gender:
Posts: 146
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Re: Newish-Returning Member
« Reply #8 on: Nov 24th, 2003, 9:32am » |
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Thanks for the welcome back and the support! Helps so much during this trying time. This switch over of meds has thrown me into a real tailspin and I am back at ground zero and having full head bangers again. Still awaiting my O2...hope it arrives soon.
RJ, my CH problems began at the age of 31, not in my teens. I have taken the cluster quiz and fit the criteria, although I have some symptoms that mimic migraines as well.
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Jackie S.
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