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(Message started by: catlind on Jan 31st, 2003, 2:31pm)
Title: Need suggestions and advice
Post by catlind on Jan 31st, 2003, 2:31pm
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
Title: Re: Need suggestions and advice
Post by echo on Jan 31st, 2003, 2:36pm
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.
Title: Re: Need suggestions and advice
Post by firebrix on Jan 31st, 2003, 3:23pm
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
Title: Re: Need suggestions and advice
Post by parrothead on Jan 31st, 2003, 4:07pm
I wish I had some words of wisdom for you.

Good luck, I hope you can get this beast under control!
Title: Re: Need suggestions and advice
Post by ave on Jan 31st, 2003, 4:08pm
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.
Title: Re: Need suggestions and advice
Post by suzy617 on Jan 31st, 2003, 4:37pm
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
Title: Re: Need suggestions and advice
Post by Karla on Jan 31st, 2003, 5:19pm
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.      
Title: Re: Need suggestions and advice
Post by Mark C on Jan 31st, 2003, 5:25pm
Good Luck Cat!            


http://www.online.ee/~aaleo/anim/cats/catruns2.gif
Title: Re: Need suggestions and advice
Post by cathy on Jan 31st, 2003, 5:45pm



Sorry can't give you any advice...but good luck at the Dr's...be thinking of you!  

Cathy :)
Title: Re: Need suggestions and advice
Post by Roxy on Jan 31st, 2003, 7:32pm
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  ;D
Title: Re: Need suggestions and advice
Post by cootie on Jan 31st, 2003, 7:51pm
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
Title: Re: Need suggestions and advice
Post by K. on Jan 31st, 2003, 10:00pm
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.
Title: Re: Need suggestions and advice
Post by Mastifflvr28 on Feb 1st, 2003, 12:22am
sorry can't give you advice cat...
BUT VIBES GOIN OUT TO YA!!!!
Good luck,
Mast
Title: Re: Need suggestions and advice
Post by Svenn on Feb 1st, 2003, 3:36am
sorry can't give you advice cat...
BUT VIBES GOIN OUT TO YOU!!!!
Good luck,
Title: Re: Need suggestions and advice
Post by 2late on Feb 1st, 2003, 9:58am
GOOD LUCK CAT!!!!                                ..........2late
Title: Re: Need suggestions and advice
Post by cerebus on Feb 1st, 2003, 1:24pm
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
Title: Re: Need suggestions and advice
Post by catlind on Feb 1st, 2003, 7:06pm
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
Title: Re: Need suggestions and advice
Post by parrothead on Feb 1st, 2003, 7:28pm
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
Title: Re: Need suggestions and advice
Post by Mastifflvr28 on Feb 1st, 2003, 10:55pm
Double whammy vibes going up here Cat!!!!
GOOD LUCK!!!
Mast
Title: Re: Need suggestions and advice
Post by kim on Feb 1st, 2003, 11:49pm
Cat,

Best of luck.  You and a "GOOD DOC" jes gotta work at it.... :)  PFDAN!!!!!!!!!!!!!!!!!!Good luck.
Title: Re: Need suggestions and advice
Post by catlind on Feb 3rd, 2003, 8:27pm
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
Title: Re: Need suggestions and advice
Post by Mastifflvr28 on Feb 3rd, 2003, 10:10pm
GREAT News Cat.
Well, not perfect news...but ok, huh?
At least it wasn't an idiot doc.
Good luck with the verap,
take care,
Mast
Title: Re: Need suggestions and advice
Post by catlind on Feb 5th, 2003, 12:19pm
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
Title: Re: Need suggestions and advice
Post by suzy617 on Feb 5th, 2003, 12:41pm
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
Title: Re: Need suggestions and advice
Post by JDH on Feb 5th, 2003, 1:38pm
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.
Title: Re: Need suggestions and advice
Post by catlind on Feb 5th, 2003, 2:32pm
Suzy, this is my 5th neuro, and I had supposedly seen one of the 'best' in the area, Dr. Haas at Syracuse University Hospital.  Don't even ask what a nightmare that was.  He sat on his side of the desk and I sat on the other and he said I had analgesic overuse headaches, end of appointment.

I was thrilled to finally meet with a neuro that a)knew what he was talking about and knew it well, and b) had a GREAT patient/doctor rapport.

Things are looking brighter than they were :)

Cat


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