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Cluster Headache Help and Support >> Getting to Know Ya >> New to this site with many questions http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1278828925 Message started by lib on Jul 11th, 2010 at 2:15am |
Title: New to this site with many questions Post by lib on Jul 11th, 2010 at 2:15am
Hello All,
I am a recently diagnosed CH suffer and I came across this most helpful and compassionate website while researching neuro anatomy. Although I now believe I may have had CH since my early 20's (treated with Calan) and discontinued in my 30's, we are treating these recent attacks much more aggressively because the pain is simply unbearable and the symptoms are undeniably CH. I guess it is too soon to know if I am episodic or chronic (unless, of course, we consider the episodes from two decades ago as CH) I have a bazillion questions concerning recent treatment options. From what I read on this site, many people experience relief from O2 and the triptans. My physician has concerns about me using the triptans nightly and I don't know the why. I am plagued by nightly attacks approximately 1 1/2 hours after falling asleep. I would like to take the triptan when I go to bed to prevent these attacks as I am miserably sleep deprived. I would think they would prevent an attack.....; I am currently taking Max Alt but my physician would like me to take Prova which is in a pill form....won't that take too long to act as an abortive? I would also like to know what the harm is in taking prednisone on a regular basis, many other disease processes require prolonged steroid treatment... has anyone ever had fluid leak from the ear on the afflicted side prior, during, or post attack? Just one small drop usually for me; this has been happening since my attacks years ago and physicians generally don't believe me and certainly can't explain it. I live in Mississippi and work in Tennessee; I am a female and I am just getting started on this road. Thank you for your wealth of information and the kindness that can be found on this site. lib |
Title: Re: New to this site with many questions Post by Ginger S. on Jul 11th, 2010 at 8:18am lib wrote on Jul 11th, 2010 at 2:15am:
Hi Lib nice to meet you and sorry we had to meet under these circumstances. In answer to your question, Yes I have had this ear drainage, at first Dr.s thought it was an infection, nope wrong just one of my weird side affects from CH and apparently yours too. Welcome to the club no one wants to be in. Imitrex is not a 'preventative' medicine it is an abortive and generally taking it before an attack has even started won't prevent one. You need a good prevent precscribed, baring that, not sure if Melatonin would help you at night before bed to help prevent attack but it's worth a try. If melatonin doesn't work for you (doesn't for me, as melatonin is a trigger for me, not for most) anyway if it doesn't work for you, you can try taking an allergy pill before bed such as Zyrtec (generic form cetirizine) this is what I do and it has helped me with night time attacks tremendously. Keep us updated and Good Luck to you! |
Title: Re: New to this site with many questions Post by lib on Jul 11th, 2010 at 1:05pm
Thank you all for your replies, information, and prayers!! Yes, indeed it is Frova.... it was late...or early...can't tell anymore. I find the Kudzu interesting since my neck of the woods has been trying for decades to eradicate this weed since it kills all the trees... am thinking about walking out to the woods and yanking some up by the root and putting it in my salad tonight! LOL... the only thing I know it may be possibly good for.
I got to see the neuro Friday and am taking my "scribe" (husband) with me. It seems I can listen, learn, and articulate while I am in his office but the instant I leave, I forget everything. This happens to me at work as well, can't even remember WHY I wrote something down or WHAT I'm supposed to do with it. I work in Corporate America Healthcare and my inabilities are becoming quite apparent. I will be asking the neuro for the O2 on my next visit. Already scoped out the supplier; used it once for one of my dogs... the Taurine is interesting because I know cats need it for retinal and cardiac health...never even thought about it for my health! I can see this is going to be a learning experience for me and I hope I can at least remember a majority of the information. Again, thanks for the replies and I know I'm going to like it here! lib |
Title: Re: New to this site with many questions Post by lib on Jul 11th, 2010 at 7:46pm
Hi bejeeber,
Thanks for the info; i think the pharmaceutical companies are all in it for the money, like most businesses. I give my dogs pred without any issues but maybe they filter it better than we do. I'm all for nature's way of handling this syndrome; unfortunately, I have no where to turn for natural remedies. My hubby (bless him) looked all over today for Kudzu and Taurine (forgot to tell him about Red Bull; although that is a little scary because of my tachycardia). He will be getting my O2 tomorrow if I can get it ordered through the neuro, if not, I'll just tell them it's for one of my dogs..LOL Hopefully I can get the canine mask modified! HA! I have found that the double dose of Depakote is making me a bit lethargic and I'm losing my passion for things I love, I even think my humor is slipping a little...go figure. I have decided if the "devil" is looking for a soul to steal he has stumbled upon the wrong girl! Thanks for the info! lib |
Title: Re: New to this site with many questions Post by Kate in Oz on Jul 11th, 2010 at 7:49pm lib wrote on Jul 11th, 2010 at 7:46pm:
;) good on you! Hope you get some relief soon. Kate |
Title: Re: New to this site with many questions Post by bejeeber on Jul 11th, 2010 at 9:18pm
Lib, you'll find that Kudzu and taurine can be ordered at a good discount at places like iherb.com.
If you happen to be close to them in California, and the weather's not too hot right now, that could be a good way to go, because they ship out fast. Or who could blame ya for paying more of a premium to get it immediately if you have a Vitamin Shoppe outlet, a Whole Foods, or some other health food store nearby? I would be concerned about mail ordering and having it shipped across the country to another state at this time of year though, since the heat can kill stuff. I suppose you'd want to look into how heat sensitive taurine is. PS - when I talk about the dangers of sustained prednisone use, I know for sure that 60 mg a day and above is a dangerous dosage to sustain, but don't know much about lower dosages. |
Title: Re: New to this site with many questions Post by lib on Jul 11th, 2010 at 10:25pm
Thanks Kate and bejeeber,
Now a question for all....can I take the melatonin with my other meds? I am taking Depakote 1000mg, prednisone 10mg (just came off the 60mg dose pack), and maxalt 10mg. Would like to try the melatonin tonight and maybe a cup of coffee. Anyone have a recipe for Kudzu tea? What are RC seeds and what do they do? Will take your advice bejeeber and check out the whole food store in Memphis. Just wanted to hurry up and get everything done today; I want my arsenal ready and I plan to win this battle as well as the war! lib |
Title: Re: New to this site with many questions Post by deltadarlin on Jul 12th, 2010 at 11:58am
lib,
Kinda thought you might be around that area (Memphis), you must live in North MS (my home town is Pleasant Hill). Try any health food store, they also have kudzu extract and taurine. Yes, you can take melatonin with the other stuff, although you might be negating melatonins' effect by drinking coffee. |
Title: Re: New to this site with many questions Post by bejeeber on Jul 12th, 2010 at 4:17pm
Hii Lib,
RC seeds are "Rivea Corymbosa". If I still have my facts straight, they are flower seeds that contain a little bit of the same LSA ingredient that is in Psilocybin which is known to be a CH fighter. Psilocybin certainly is a more powerful medicinal plant, but RC is legal to mail order and possess. More info can be found at clusterbusters.com and it's forum, plus there are plenty of members here knowledgeable about it, and some informative responses to a topic devoted to RC would likely be forthcoming in the "Medications, treatments" forum on this site. |
Title: Re: New to this site with many questions Post by lib on Jul 12th, 2010 at 9:16pm
Hello Delta Darlin and Bejeeber,
Thanks for the replies. Yes DeltaDarlin, I am familiar with that area in MS. I noticed some pictures from LA that look similar to my neck of the woods on this site. I lost my"triple tree" (oak) to Katrina and am still sick over it. I am originally born and raised on the East Coast and followed my hubby out here 9 years ago. Have not stumbled across any cow pastures with fungi yet! lol. Will try the melatonin tonight without caffeine although I think the caffeine helps me in general. The one thing I have learned about myself during this process is that I am actually afraid of something... never thought that would be the case with me. I'm afraid of the pain, I'm afraid of the meds, I'm afraid of the embarrassment etc, etc, etc. It is a humbling experience. Thanks for the info! lib |
Title: Re: New to this site with many questions Post by Charlie on Jul 12th, 2010 at 10:21pm
Hi lib:
I'm glad to meet you but sorry it has to be because of this horror. Sometimes my sleeping in a recliner would prevent one of my overnight attacks. At least it's non-invasive and the price is right. Charlie |
Title: Re: New to this site with many questions Post by lib on Jul 12th, 2010 at 11:07pm
Hi Charlie,
Thanks for the tip. I tried that a couple of time and propping myself up on pillows on the bed as well. I've also tried staying up past the bewitching hour. Nothing seems to help but I am new at this. I just took my 1000mg of Depakote and a melatonin and we'll see what happens...this is such a guessing game! lib |
Title: Re: New to this site with many questions Post by lib on Jul 13th, 2010 at 12:16pm
Hello All,
Last night I took my Depakote and a Melatonin and I just woke up (10 glorious PF hours)!! Okay, so I missed work but I SLEPT for the first time without a hit since May! I am so excited and am hoping it is not just a coincidence. Will try again tonight and see what happens... thanks for your prayers! e |
Title: Re: New to this site with many questions Post by wimsey1 on Jul 13th, 2010 at 3:30pm lib wrote on Jul 13th, 2010 at 12:16pm:
Sleep is the best! And we all know what it's like to be afraid to go to bed. Take each day as it comes, armed and armored against the beast, and keep fighting for relief. You are your best advocate, but this site isn't far behind! Blessings! lance |
Title: Re: New to this site with many questions Post by bejeeber on Jul 13th, 2010 at 3:49pm
What lance just said. 8-)
Plus YAY! for an actual nights sleep sans beast. [smiley=thumbsup.gif] |
Title: Re: New to this site with many questions Post by lib on Jul 13th, 2010 at 4:07pm
Lance and bejeeber,
Thanks for the encouragement! I stumbled across the messages on hormone replacement and wonder if the increasing prevalence of CH in women is related to increased testosterone treatment for endometriosis in the late 70's, 80's, and 90's, or perhaps postponing childbirth,or the increase of birthcontrol using testosterone. I have an appointment to have my levels checked. I hate defeat and I intend to keep going until I find my weapon. I understand it is different for all of us; but don't you think there MUST be a common denominator? lib |
Title: Re: New to this site with many questions Post by Kate in Oz on Jul 13th, 2010 at 9:58pm
My CH started in my late teens, now in early 40's. The only year I've not had cycles was when I was pregnant so perhaps hormones do play a part? I read on another thread about low testosterone levels being a factor - but honestly always thought that my levels were slightly high? Never had them tested to confirm this - was going to once but the test cost over $200, not something I can afford.
Pleased to hear your getting some relief! Kate |
Title: Re: New to this site with many questions Post by lib on Jul 13th, 2010 at 11:00pm
Hi Kate,
High for a woman...but low for a man... just a thought. |
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