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Terrell
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Hello-I am new
« on: Apr 11th, 2008, 12:15pm » |
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Hello all. My name is Terrell. I have been diagnosed with CH's since age 24 (19 years now). I have been headache free for 5 years until now. I am in I think week 6. I am having about 4 to 6 a day right now. I have been on varapamil for a little over a week now but I haven't seen any signs of the headaches letting up. However I am almost 24 hours pain free. So, I am a little hesitant to say I am on the down side of things. I have one question; what is meant by "shadowing"?
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Superdave
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Re: Hello-I am new
« Reply #1 on: Apr 11th, 2008, 12:25pm » |
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Hi Terrell and welcome,
Sorry your hurting again but were glad to have a new brother in the fight against the beast.
Please tell us more of what you know about your condition, and how this long remission of yours started
Shadows are the mild lingering pain we feel when not under attack by the beast. You know that pesky reminder of what was or what to look forward to on the ch side of our brain.
Superdave
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Wow! you mean it's just in my head?
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Guiseppi
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Re: Hello-I am new
« Reply #2 on: Apr 11th, 2008, 12:39pm » |
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Welcome to the board, I'm glad you found us. Verapamil can take up to 14 days to really start to help. Do you have oxygen yet? It should be your first line abortive medication. I can stop an attack in as little as six minutes using only oxygen. Please read the link on the left..."oxygen info" used incorrectly it's useless. Used correctly it's a Godsend for many of us.
Hoping the cycle is ramping down for you.
Guiseppi
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Bob_Johnson
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Re: Hello-I am new
« Reply #3 on: Apr 11th, 2008, 3:28pm » |
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How the scientific types describe shadows:
Curr Pain Headache Rep. 2001 Feb;5(1):55-9.
Premonitory symptoms in cluster headache.
Raimondi E.
Catedra de Neurologia, Facultad de Medicina, Universidad Nacional de Rosario, 9 de Julio 3826, Rosario 2002 PKP, Argentina. raimondi@cablenet.com.ar
Cluster headache is one of the most excruciating headaches affecting human beings--especially the male sex. Most of the cluster headache cases are of episodic nature, with active cluster periods lasting generally between a few weeks and 2 or 3 months. A still undetermined percentage of patients report nonpainful sensations preceding the onset of the pain attack for a variable period of time. If occurring only a few minutes or a few hours before the onset of pain, such symptoms are called prodromal. When occurring for several days, weeks, or months before the pain, they are termed premonitory symptoms. The author believes that premonitory symptoms have not been properly diagnosed and emphasizes the need to investigate their presence, because by knowing them advances can be made in the understanding of the physiopathology of this particular cephalalgia. Furthermore, it can also allow the physician to be ahead, by giving preventive treatment and stopping or diminishing the intensity and duration of the pain attacks.
Publication Types:
Review
PMID: 11252138
------------
Here is a good statment of current thinking re. therapies:
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
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Bob Johnson
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Terrell
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Re: Hello-I am new
« Reply #4 on: Apr 11th, 2008, 7:30pm » |
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Well, let me see what I can share. I stopped drinking altogether at 27 but that didn't change anything. Originally I used prednisone. About 6 1/2 years ago I was in a cycle. At the same time, I was also diagnosed with bi-polar, type II diabetes, and sleep apnea. So, I started taking medication for the bi-polar and the diabetes and I have used a cpap machine since that time. At the same time, my neurologist put me on oxygen and lithium for the headaches. The oxygen did nothing; I mean nothing. And I became toxic on the lithium and started having seizures. I had to go to the hospital. After that nightmare, I switched to Imitrex and got immediate results. I changed my diet somewhat yet I still smoke. Personally, I think the bi-polar meds, from the research I have recently done, may have played a part in my remission for so long. However, I got used to them and they affect my diabetes so they changed things around again in January and I had to go on insulin all the time. One was Seroguel and the other was Zeprexa. I am now on Depakote. I started out on 240mg of Verapamil about 8 days ago but I have bumped myself up to 480mg slowly after looking at all the research on it. It took a few days to get used to it. I didn't like the side affects but they have disappeared. I don't know if that helps, but that is my history in a nutshell.
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Brew
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Re: Hello-I am new
« Reply #5 on: Apr 11th, 2008, 7:35pm » |
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How did you administer the oxygen? It has to be through a NON-rebreather mask at 12-15 liters per minute, completely saturating your bloodstream with oxygen as quickly as possible.
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Always remember that you're unique, just like everyone else.
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Paul98
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Re: Hello-I am new
« Reply #6 on: Apr 11th, 2008, 8:52pm » |
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Hi Terrell-
Glad you found us but sorry you had reason to. Welcome to the club.
Shadowing is when you are between hits. You can feel it in your head. it can be a very low grade hit or headach that comes and goes but it isn't getting slammed with an attack. For me many times I feel something inside my head on the same side as I get hit on. Sometimes it almost feels like worms. Not really painful but very noticable. They can exist from before you really go into cycle (for me it is about 3-4 days) and last a few days after your last hit in your cycle. They are not allways present during the cycle but crop up often.
Hope this answers your question. There is a lot of collective knowledge here so read up and ask questions.
-P.
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Terrell
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Re: Hello-I am new
« Reply #7 on: Apr 11th, 2008, 9:08pm » |
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First of all, I appreciate so much response. This is very encouraging. Just knowing that others are out there makes a difference. Most people around me really don't understand. So thank you. I appreciate my questions being answered. So what I have felt today has been shadowing. The worm description is dead on for me too. As far as the oxygen goes, it has been so long I really don't remember. I got so sick from the Lithium that I was scared to death. Headaches and seizures at the same time suck!!  I will follow up with my Doctor on that. I do remeber that I had like a nose insert only. No mask.
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debOUCH
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Re: Hello-I am new
« Reply #8 on: Apr 11th, 2008, 10:06pm » |
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when i get a heavy hit of a CH, the most of my pain is drawn to my jaw/teeth/cheedk area.....with the punding down from my head/forehead.....my shadows are similiar to that, but like a "mild burning" down from the top of my head, moving to my jaw/teeth/cheek.............like the beginning a Ch but never goes to a complete....................kinda, starts..then eases.....i guess that is right.................
deb
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kevmd
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Re: Hello-I am new
« Reply #9 on: Apr 11th, 2008, 10:35pm » |
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give the verap a chance. Sounds like it may be taking affect. See how long this pain free time goes. Maybe its a good time to try o2 again. It possibly saved my life this time around. There is only so much imitrex one can take and afford
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Brew
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Re: Hello-I am new
« Reply #10 on: Apr 11th, 2008, 10:43pm » |
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Those nasal cannulas for the oxygen won't do jack for your CH. It's not surprising that you are of the opinion that the oxygen didn't work - it really didn't.
Read the "oxygen info" link at the left of this page and then search out some oxygen threads on the Medications, Treatments and Therapies board. The stats say that oxygen helps about 70% of CH sufferers abort attacks in about 10-15 minutes. I'm convinced that if everybody did it correctly, that number would actually be about 95%.
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Always remember that you're unique, just like everyone else.
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RichardN
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Re: Hello-I am new
« Reply #11 on: Apr 12th, 2008, 2:10am » |
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Ditto to what Brewcrew said
When I came here, got the info and went to my doc and DEMANDED a script for 02 . . . he relented, but prescribed 6 lpm through the nasal canulla . . . I persisted, got the 15 lpm regulator and acquired a non-rebreather mask . . . it's my only abortive and a true miracle for those of us (and as Brew said . .. . that's most of us).
Be Safe, {FDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Paul98
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Re: Hello-I am new
« Reply #12 on: Apr 12th, 2008, 7:10am » |
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on Apr 11th, 2008, 9:08pm, Terrell wrote:| First of all, I appreciate so much response. This is very encouraging. Just knowing that others are out there makes a difference. Most people around me really don't understand. So thank you. I appreciate my questions being answered. So what I have felt today has been shadowing. The worm description is dead on for me too. As far as the oxygen goes, it has been so long I really don't remember. I got so sick from the Lithium that I was scared to death. Headaches and seizures at the same time suck!! I will follow up with my Doctor on that. I do remeber that I had like a nose insert only. No mask. |
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And THAT Terrell is why this place exists! In fact, it was exactly 10 years ago from your first post that CH.com came into existance!
Best advice I can offer about this place is take what you need and give back what you can. It is a place of sharing. 
-P.
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coreyo87
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Re: Hello-I am new
« Reply #13 on: Apr 12th, 2008, 12:13pm » |
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Hey Terrell,
For me at least, shadowing could mean that sharp pin point pain you start to get on the one side of your head as a foreshadowing to the cluster headache.. anyone have a similar experience?
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Terrell
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Re: Hello-I am new
« Reply #14 on: Apr 12th, 2008, 3:31pm » |
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[quote author=Paul98 link=board=knowya;num=1207930529;start=0#12 date=04/12/08 at 07:10:02]
And THAT Terrell is why this place exists! In fact, it was exactly 10 years ago from your first post that CH.com came into existance!
Best advice I can offer about this place is take what you need and give back what you can. It is a place of sharing.
-P.
I am just amazed at how diligent and helpful everyone is. I am at 48 hours now PF. I have learned so much already. I am definately going to re-explore the oxygen. The Imitrex is killing my pocket and the insurance company only allows for so much per month. Plus now I am reading about the rebound effects. I still wish I had more to offer as to why I went so long without a cycle. I guess I should just feel fortunate.
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CostaRicaKris
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Re: Hello-I am new
« Reply #15 on: Apr 12th, 2008, 3:44pm » |
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on Apr 12th, 2008, 3:31pm, Terrell wrote:| I still wish I had more to offer as to why I went so long without a cycle. I guess I should just feel fortunate. |
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Yes, feel fortunate and hope for another. I had a four year remission before the beast came back last fall. I'm six weeks into another cycle now. Maybe I'll go into another remission next. There's no way to know.
This place is pretty amazing. I've been coming here since last Sept. and I'm still amazed as I read everyone's descriptions of shadows and think.. how can people I don't know be so accurately describing the pain I feel.
~Kris
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Visit my website: http://www.active.com/donate/amnhealthcare/KristinaMorris to learn more about Girls on the Run, a non-profit prevention program that encourages preteen girls to develop self-respect and healthy lifestyles through running
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Terrell
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Re: Hello-I am new
« Reply #16 on: Apr 12th, 2008, 10:24pm » |
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Thanks Kris. I think I am finally come out of my cycle due to the varapamil. I am over 2 and 1/2 days PF. I have had almost no shadowing today. I am starting to feel normal again. I am still cautious though. You never know.....
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mezza
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Re: Hello-I am new
« Reply #17 on: Apr 12th, 2008, 10:46pm » |
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Hey Terrell- glad you found this site- I too had long periods of remission between cycles- last cycle before the one i am in now was 4 years ago and prior to that my cycle was 5 years prior to that. This current cycle is creeping up on 6 weeks.
I finally got on verapamil 480 mg and my doctor just increased it/added an bedtime dose too - another 180 mg. I have had the same troubles with insurance and immitrex so my neuro is being creative- gave me frova for a week and now is trying indomethicin as an abortive- just to see- can still use the immitrex though - I have found that before i was on the verap i would go thru 2 immitrex a day ( stat doses or nasals) this last week i only used 6 for the whole week - also shadows are not too intense anymore and the hits i do get still about 1 a day ( never at night anymore) i can kill with oxygen or a redbull ( if I am at work) or 2 cups of coffee.
While cycle isn't done and i still get uncomfortable shadows sometimes very strong- my quality of life is much improved
wishing you the best- hope things continue to improve for you
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Terrell
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Re: Hello-I am new
« Reply #18 on: Apr 13th, 2008, 3:42am » |
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Hey Terrell- glad you found this site- I too had long periods of remission between cycles- last cycle before the one i am in now was 4 years ago and prior to that my cycle was 5 years prior to that. This current cycle is creeping up on 6 weeks.
I finally got on verapamil 480 mg and my doctor just increased it/added an bedtime dose too - another 180 mg. I have had the same troubles with insurance and immitrex so my neuro is being creative- gave me frova for a week and now is trying indomethicin as an abortive- just to see- can still use the immitrex though - I have found that before i was on the verap i would go thru 2 immitrex a day ( stat doses or nasals) this last week i only used 6 for the whole week - also shadows are not too intense anymore and the hits i do get still about 1 a day ( never at night anymore) i can kill with oxygen or a redbull ( if I am at work) or 2 cups of coffee.
While cycle isn't done and i still get uncomfortable shadows sometimes very strong- my quality of life is much improved
wishing you the best- hope things continue to improve for you
Thank you. I too am on 480mg of varapamil. I take 240 in the morning and 240 at night. I just finished a little dance. Probably just what everyone is referring to as a bad shadow. But, compared to what I was having, this was very mild. Just strong enough to get me out of bed for a half hour.
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Javier
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Re: Hello-I am new
« Reply #19 on: May 10th, 2008, 11:21pm » |
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Hello, My name is Javier.
I'm new to message boards but m a 24 year veteran of Clusters. Just started my cycle last night and fear the next 6-8 weeks. My experience has been every other year starting lat Oct,Nov-Dec, Jan. When I did not have a cycle last Nov. I was excited. Well, I'm not excited anymore. Luckily I have 4 tablets of Fioricet left from my last cycle and with a little help from above I might make it thru to monday to see my doctor. I've been thru Lithium, Verap, Imitrex and a few others but I forget their names. Imitrex worked for about 6 years which was 3 cycles and then stopped working last cycle when Fioricet came into my life. For the first 15 years the 2-3 doctors I consulted did not have a clue and would tell me I needed to rest and reduce the stress in my life leaving me to wish I could drill a hole in my head to relieve the pressure. Well, I'm still here so it's safe to say I didn't drill that hole. Anyways, It's nice to find others who know the pain although I'm sorry that you have to go thru this. I'm married with kids and my wife feels absolutely helpless and I hate to let my kids see me this way although my two oldest have seen me at my worst.
Getting late and I don't want to go to sleep tonight because I know I'll be up in 15-30 screaming and banging and praying for mercy. Well, I look forward to talking with some clusterheads and hopefully learn of some treatments I have not tried.
-Javier
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chefjohn
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Re: Hello-I am new
« Reply #20 on: May 11th, 2008, 2:37am » |
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Dear Javier,
I too and new to this board and a somewhat newbie to ch...at 50. Go figure. I have had pleanty of headaches and symptoms of ch in the past but this is my first full blown cycle. I am about 2 1/2 weeks into it and have an episode every 2 to 4 days. I had a bad one last night and shadows all day and kinda afraid to go to sleep now but i am a chef and tomorrow is one of our busiest days of the year. i just got my script for imitrex inhaler today and it is sitting right next to me. I am about 1/2 way through my prednisone which so far has proved to be no help. I am trying melatonin for the first time tonight. just starting slow with 3 mg, we'll see if that helps at all. i have never used imitrex before and I'm a little scared that I won't do it right. I don't want to waste a dose and not quite sure when to take it. like I said I have had shadowing all day but I have never had an episode two days in a row but I don't want to wait till it is a full blown K 8-9. Any advise out there. Thanks John
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mezza
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Re: Hello-I am new
« Reply #21 on: May 12th, 2008, 7:11pm » |
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as for when to take the trex- as soon as you feel you are going to get hit- trex usually for most people takes anywhere from 10-20 minutes to take effect - so take early in the hit
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Batch
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Re: Hello-I am new
« Reply #22 on: May 12th, 2008, 8:03pm » |
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Terrell,
Welcome aboard. You've come to the right place. I just posted a reply to Javier and in the interest of expediency, I'll use it again for you.
Bob Johnson, Guiseppi, and others have given you some sound words of advice in what works for them. I'll second Guiseppi's words on oxygen therapy. It is by far the most effective, lease invasive, and least expensive abortive for the most CH'ers, and it if used properly, oxygen therapy can abort the pain of a cluster headache attack in less than 10 to 15 minutes depending on the flow rate and Kip-level of pain. The higher the pain the longer it takes to abort the attack... so start oxygen therapy early.
When you see your doctor/neurologist ask for oxygen therapy up front. Most neurologists will put you off and not give you an Rx for it until they get an MRI or CT Scan. That's reasonable if they are seeing you for the frirst time and question the diagnosis as they do need to look for another cause.
If you get a green light for oxygen therapy make sure your prescription reads like the following:
"Oxygen Therapy with a non-rebreather mask at 12 to 15 liters/minute flow rate AS REQUIRED for cluster headaches."
This prescription will cover all the bases with your medcal insurance company and the medical home delivery folks that drop off your oxygen cylinders, mask, and regulator (that should be good for 15 liters/minute).
One of the best strategies for treating cluster headaches comes from the Michigan Headache & Neurological Institute (MHNI) Ann Arbor, MI. The neurologists there have hundreds of cluster headache patients from all over the world coming to see then so have far more experience treating people with our disorder than most.
http://www.mhni.com/clusterheadaches.aspx#treating
If your doctor/neurologist gives you a regiment of treatments like shown in the link above... You're in good hands. We're all wired differently so there is no single course of treatments that works for all of us all the time. In fact, what works for you this year may not work next year... The beast is expert at morphing.
Take care,
V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, not any before nor after, that’s as lovely as a great airplane. Man has one virginity to lose in fighters, and if it is a lovely airplane he loses it to, there is where his heart will forever be.
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createdforjoy
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Re: Hello-I am new
« Reply #23 on: May 12th, 2008, 8:41pm » |
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Hi Terrel,
I hope that your Verapamil begins to work well for you. I was having great success with it until they reduced the dose because I became symptomatically (multiple episodes of fainting)bradycardic ; up to 39% of patients using it may experience this at some point. The current reccomendation is to start at 240mg and increase by 80mg every two weeks until a max dose of ummm 960mg (for a large person) or headaches resolve. An ECG is done every two weeks to monitor for heart issues.
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