Author |
Topic: Need suggestions and advice (Read 718 times) |
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
  
 
Gender: 
Posts: 3433
|
 |
Need suggestions and advice
« on: Jan 31st, 2003, 2:31pm » |
 Quote  Modify
|
As many of you know, I am leaving on Sunday for Washington DC for an appointment Monday morning at the Walter Reed Army Medical Clinic. I had originally thought I was being referred to the headache clinic, but as it stands now, it looks like I'm being referred to neurology. I have no idea of how the two departments interact.
Okay, the purpose of this referral and appointment, is to find a treatment plan that does not include narcotics. Brief history, I'm currently on Celexa as a preventative, which for about a year worked well, it doesn't seem to be working much anymore at all. I have Oxygen, it's a life saver. However I have no other abortives. I've been on the list of meds, and then some. I am hypotensive, and the calcium channel blockers such as verapimil are dangerous for me. I currently take norvasc (same class of med) at the min. dose, 2.5 mg a day. Hardly enough to handle a CH. I have had heart palpitations my entire life, never thought much of it. After the referral to the cardiologist in the hopes of getting approval to take Frovatriptan, it turns out I have angina, tachycardia/arrythmia, and coronary artery spasms that they believe are the early stages of coronary artery disease. During the heart catheterization they couldn't get a blood pressure reading higher than 90's/50's so you can see where drugs that cause blood pressue drops could be deadly to me. With the other heart conditions, the cardio, has adamantly refused to allow me to use triptans as abortives. Right now my arsenal involves the use of narcotics to keep the edge off so I don't stick my head under a moving tire.
I need suggests from the family as to what I should ask for or hope to get in the way of preventatives and abortives with the above issues. I do not wish to spend my life relying on narcotic medications for my cycles. The rebound headaches can be hell, although I know how to deal with them easily enough now, aleve morning and night to prevent them and to get rid of them after the cycle ends and I'm not taking the narcotics. I'm hoping someone out there in clusterville/clusteropolis will have some ideas or suggestions for what I can hope to get as an abortive and preventative to help in my treatment regiment.
Thanks to all, and here's hoping Monday is not another performance of god complex dr, that won't listen to patient and says I'm a drug addict. *sigh*
Cat
|
|
 IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
echo
CH.com Alumnus
New Board Hall of Famer
Chronic and still alive --- I Win!
Gender: 
Posts: 4214
|
|
Re: Need suggestions and advice
« Reply #1 on: Jan 31st, 2003, 2:36pm » |
Quote Modify
|
Cat, I wish I could give you some pearls of wisdom but I can't think of anything. You will be in my thoughts and I'll be sending positive vibes your direction in hopes that the dr you meet with will listen closely to what you say and dig deep into his bag of tricks to find the solution. If the dr can't I hope he/she has the common sence to reachout to other drs to help you get the treatment you need.
Good Luck Sis.
|
|
IP Logged |
"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
|
|
|
firebrix
New Board Hall of Famer
I must never weaken.
Gender:
Posts: 683
|
|
Re: Need suggestions and advice
« Reply #2 on: Jan 31st, 2003, 3:23pm » |
Quote Modify
|
Good morning Catlind
Like Echo, I'm right out of pearls, but do want to wish you all the best.
Have you tried gabapentin /celebrex/aropax ? These were all tried, sadly to no avail on Mopar, but then, what doesn't work for one, might well work for another CHer.
Sure will send lots of good vibes your way on Monday.
firebrix
|
|
IP Logged |
"All that it takes for the triumph of evil is for good men to do nothing."
Edmund Burke
|
|
|
parrothead
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 42
|
|
Re: Need suggestions and advice
« Reply #3 on: Jan 31st, 2003, 4:07pm » |
Quote Modify
|
I wish I had some words of wisdom for you.
Good luck, I hope you can get this beast under control!
|
|
IP Logged |
"If we weren't all crazy, we would go insane"
J. Buffett
"Be good, and you will be lonesome"
Mark Twain
|
|
|
ave
Guest
|
|
Re: Need suggestions and advice
« Reply #4 on: Jan 31st, 2003, 4:08pm » |
Quote Modify
 Remove
|
Hi Cath,
probably no pearls, but maybe... You might want to go the Lithium way. I understand you or hubby (or both) work for the army, which means a solid underpinning of f'r instance laboratory services. With Lithium you have to have bloodwork done ever so often.
If you can't afford that (insurance) you are cooked along with the goose.
There's also pred, and there's imitrex shots. You may want to check out BP issues with these two meds. Maybe they up the pressure...
And if you btdt, sorry, no more to offer, not in a regular hospital I don't mean.
Any which way, wishing you great good luck on monday.
|
|
IP Logged |
|
|
|
suzy617
CH.com Alumnus
New Board Hall of Famer
Love is friendship set on fire
Gender:
Posts: 1902
|
|
Re: Need suggestions and advice
« Reply #5 on: Jan 31st, 2003, 4:37pm » |
Quote Modify
|
Cat,
Sorry I cant offer any advice. As a sufferer for 21 years I have just recently started trying the meds. One med I would not recommend is inderal because it did lower my bp alot so that would obviously be a no no for you.
Anyway, wish you tons of good luck monday, keep us posted.
suzy
|
|
IP Logged |
When God measures men, He puts the tape around the heart, not the head.
|
|
|
Karla
CH.com Alumnus
New Board Hall of Famer
One of Many and Never Alone - Join OUCH
Gender:
Posts: 3090
|
|
Re: Need suggestions and advice
« Reply #6 on: Jan 31st, 2003, 5:19pm » |
Quote Modify
|
for preventatives lithium, (anticonvulsants) topamax, tegretol, depakote, neurontin, (antidepressents) paxil, effexor(made up alot like celexa)
abortives: migranol ns, midrin
If you are forced to go with a narcotic I would highly recomend at least trying methadone. It is designed as a pain medication drug. Start on the lowest dose 10mg am and 10mg pm and see how you react to that. My dr. told me it was equivalent to taking 2 or 3 percacet, oxycodone, vicadin. However, its compound is different and that is why it may help where the others do not. Because that much percacet and vicadins did nothing for me but the methadone has kicked my clusters in the but big time. I am getting maybe 2 or 3 ha a month compared to 8/day. I have no side effects from the methadone and can function with 100% of my brain there. No jokes alowed on that one either. I am just trying to say I don't feel out of it at all.
|
|
IP Logged |
Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
|
|
|
Mark C
CH.com Alumnus
New Board Hall of Famer
Onward through the fog.
Gender:
Posts: 2660
|
|
Re: Need suggestions and advice
« Reply #7 on: Jan 31st, 2003, 5:25pm » |
Quote Modify
|
Good Luck Cat!
|
|
IP Logged |
Click The Flag
|
|
|
cathy
CH.com Alumnus
New Board Hall of Famer
Not all those that wander are lost......
Gender:
Posts: 2267
|
|
Re: Need suggestions and advice
« Reply #8 on: Jan 31st, 2003, 5:45pm » |
Quote Modify
|
Sorry can't give you any advice...but good luck at the Dr's...be thinking of you!
Cathy 
|
|
IP Logged |
My own tears would mean nothing to me, if I could stop you from just shedding one....
|
|
|
Roxy
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2282
|
|
Re: Need suggestions and advice
« Reply #9 on: Jan 31st, 2003, 7:32pm » |
Quote Modify
|
Cat,
Wish I could help you.....I'm still stumbling around in the dark myself. But, I'm wishing you all the best. I hope they can do something for you.
Take care and travel safe,
Tracey 
|
|
IP Logged |
Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
|
|
|
cootie
New Board Hall of Famer
sumday I'm gonna be sumbody........ ..
Gender:
Posts: 8406
|
|
Re: Need suggestions and advice
« Reply #10 on: Jan 31st, 2003, 7:51pm » |
Quote Modify
|
All I can do is wish you the best of luck cat.....I've heard there are alot of new meds out there to try....would imagine these docs will be of help with your health records at hand 'n all.....good luck....have a safe trip.... !!!! Pam
|
|
IP Logged |
Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
|
|
|
K.
New Board Veteran
Gender:
Posts: 127
|
|
Re: Need suggestions and advice
« Reply #11 on: Jan 31st, 2003, 10:00pm » |
Quote Modify
|
Cat,
Lithium may be something you want to check into. It's supposed to work better taken with Verapamil. I'm wondering if you could take a very low dose of Verapamil, I don't know...somethin' to ask your doc though.
Along with everyone else I'll be sendin' all the good vibes your way. Good luck.
K.
|
|
IP Logged |
|
|
|
The mad viking
CH.com Alumnus
New Board Hall of Famer
Always Look on The Bright Side of Life
Gender:
Posts: 3135
|
|
Re: Need suggestions and advice
« Reply #13 on: Feb 1st, 2003, 3:36am » |
Quote Modify
|
sorry can't give you advice cat...
BUT VIBES GOIN OUT TO YOU!!!!
Good luck,
|
|
IP Logged |
Always Look on The Bright Side of Life
|
|
|
2late
New Board Hall of Famer
Ride Free..Pain Free
Gender:
Posts: 1190
|
|
Re: Need suggestions and advice
« Reply #14 on: Feb 1st, 2003, 9:58am » |
Quote Modify
|
GOOD LUCK CAT!!!! ..........2late
|
|
IP Logged |
|
|
|
Cerberus
New Board Hall of Famer
Whomever said that two heads are better than one?
Gender:
Posts: 2117
|
|
Re: Need suggestions and advice
« Reply #15 on: Feb 1st, 2003, 1:24pm » |
Quote Modify
|
geez....I ain't got much to say either, kinda tough spot for you to be in. I CAN offer this though. Dealing with the government in any capacity is a pain in the azz, and chances are that the two departments correspond little if at all. I have faith in ya though, just be as well armed as possible.
Safe journey and wishing you the best!!!!!!
Cerebus
|
|
IP Logged |
I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender:
Posts: 3433
|
|
Re: Need suggestions and advice
« Reply #16 on: Feb 1st, 2003, 7:06pm » |
Quote Modify
|
Thanks everyone,
keep the ideas coming, I'm bringing my laptop with me, so hopefully will be able to post from DC.
I really need to find a more effective treatment. Especially since the beast has once again changed his MO and I'm getting hit about 8 times a day.
Lack of sleep and fear and anxiety over the beast and the appt aren't helping. I'm a stress triggered CH, so needless to say, life's been rough.
I just need youguys to keep racking your brains for some sort of ideas as to what to ask for or what to expect. I've done the lithium and my levels went sky high withing a couple of weeks, so not so sure that's a possible. I'm hoping they'll review my cardio report and bring a cardio in to monitor me for use of frova (I can dream)
Something has to be available to those like me that can't rely on the standard effective cocktail. Although to be honest, I'm about ready to forget the cardiac warnings and go for Frova anyway. Read my cardiac work up, and discovered a few things they didn't tell me:
mitral valve regurgitation, tricuspid valve regurgitation, and sinus rhythms with rare premature atrial contractions. Not a clue what that means. And I don'thave the energy right now to look it up.
Mostly send me your vibes, this place has worked miracles for many, so I am asking
Cat
|
|
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
parrothead
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 42
|
|
Re: Need suggestions and advice
« Reply #17 on: Feb 1st, 2003, 7:28pm » |
Quote Modify
|
Cat, of course everyones different, but my doc gave me frova samples. frove wasn't a great option for me - didn't work real well.
Don't know if you've tried "Amerge" but it kills my beast usually within a half hour.
KEEP ON TRUCK'IN! ;D
|
|
IP Logged |
"If we weren't all crazy, we would go insane"
J. Buffett
"Be good, and you will be lonesome"
Mark Twain
|
|
|
kim
New Board Newbie
I love YaBB 1G - SP1!
Posts: 7
|
|
Re: Need suggestions and advice
« Reply #19 on: Feb 1st, 2003, 11:49pm » |
Quote Modify
|
Cat,
Best of luck. You and a "GOOD DOC" jes gotta work at it.... PFDAN!!!!!!!!!!!!!!!!!!Good luck.
|
|
IP Logged |
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender:
Posts: 3433
|
|
Re: Need suggestions and advice
« Reply #20 on: Feb 3rd, 2003, 8:27pm » |
Quote Modify
|
Hi everyone,
I'm still in DC but thought I'd post and let everyone know how things went.
The doc was awesome, he knew all about CH's and agreed completely with the diagnosis of Ch and Migraine.
He wants me started on verapamil at the lowest dose as soon as the cardio will give the okay, and then we'll gradually up the dose as I tolerate it.
He wished there was a miracle pill he could give me but for now I'm stuck with celexa (he thinks that's a great med for the anxiety) verapamil as soon as I can get started, O2, and unfortunately narcotics as needed.
Because of my reaction to immitrex and my cardiology report, he said it would highly unlikely that any neuro or cardio would approve the ergots or the triptans.
We are going to start out with the verapamil, and stay on the O2, and he even referred to the triptans/ergots, verapamil and O2 as the gold standard for Clusters.
Once we determine my tolerance to the verapamjil, we may look at other meds, and he wants meto see a biofeedback clinic and pain management clinic to try to control the pain without narcotics.
Unfortunately I didn't get what Ihoped for, and that was to get narcotics out of my treatment regiment, but for now, (and he said not to give up hope) that's where we have to stay until I get a cardio to give me the go ahead for a triptan or ergot based med. When the Relpax is available in the US he wantsme to conact him again (can you believe it, a neuro that gaveme his direct number) so we can check the sideeffects and compounds to see if it will be a viable option.
So no miracle cure or treatment, but at least he is on the right track and very knowledgeable with CH's.
Thanks for all the vibes everyone.
Cat
|
|
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender:
Posts: 3433
|
|
Re: Need suggestions and advice
« Reply #22 on: Feb 5th, 2003, 12:19pm » |
Quote Modify
|
Yup it was a great appointment. I am very please with this neuro. He rocks. No it wasn't perfect, but at least he knows what he's talking about and isn't ready to give up just because the current meds aren't suitable for me. I'll get there ... just gonna take some time
(and maybe a new cardio LOL)
Cat
|
|
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
suzy617
CH.com Alumnus
New Board Hall of Famer
Love is friendship set on fire
Gender:
Posts: 1902
|
|
Re: Need suggestions and advice
« Reply #23 on: Feb 5th, 2003, 12:41pm » |
Quote Modify
|
Sounds like a good start Cat. You could have ended up at a dead end like many when they visit the doc for the first time. Its such a relief when they know what their talking about. 
suzy
|
|
IP Logged |
When God measures men, He puts the tape around the heart, not the head.
|
|
|
JDH
CH.com Alumnus
New Board Hall of Famer
We will get by, We will survive!
Gender:
Posts: 2453
|
|
Re: Need suggestions and advice
« Reply #24 on: Feb 5th, 2003, 1:38pm » |
Quote Modify
|
Catlind,
Finding a DR that actually knows anything about CH's is half the battle and it sounds like you've found one.
Hang in there, fight the good fight and good luck on your treatments.
PFDAN's to you.
|
|
IP Logged |
9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss