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Topic: NEUROLOGIST SAID..... (Read 695 times) |
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captdshea
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NEUROLOGIST SAID.....
« on: Nov 6th, 2002, 7:17pm » |
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Neurologist said, let me guess as he walk thru the door
CH! he had my HA log stateing time lenght and intensity
of the HA'S for ten days, On the clip board with my chart.
The visit went pretty much the way you guys said it would. Pokeing and twist, scrabeing bear feet. and touch your nose. ekg and talk of history and HA episode.
Veapamil er 360mg twice daily to start, Another visit
next week. keep log of blood pressure and HA.
Possible mri next week, He did not rule it out. But, did
say look at the history and the syptoms, easy diagnois
CH. He did speak of the sufferes not knowing Ch and there are many visiting him.
I was happy to find the locale hospital has emergency
treatment for the Headache clinic of louisianna
this is a large medical community, all centered around
Our lady of lords hospital.
Does anyone Know how long before I should see some
effect from the Verapamil? MY HA have been 3 to 4 per
day lasting 20 to 30 mins around kip 7..
BTW nothing for pain mention, I did'nt want any thing for this cycle ( so far anyway ) But, I find it odd he did not mention it.
But, My log stated the pain level for each HA
SEVERE, MODERATE, MILD...
Wanted to thank everyone for answering my pervious
post, Take care and hope you are PF.
David
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kim
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Re: NEUROLOGIST SAID.....
« Reply #1 on: Nov 6th, 2002, 7:33pm » |
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So, you made it through that first "thing" with the neuro. The verap dose seems small to me but i'm a dunce in that arena. I seem to remember a higher dose of verapimil for effective preventative................could be wrong, but-- also, did you ask about the verap PLUS the lithium? Again, the doses vary and may take time for a positive "hit" but stick with it. Hopefully, the folks more in the "know" on this board will chime in re doses???? ???
I think it is a good sign that the doc did not push the pain med thing. That is a good sign to me that he/she is on the ball. Listen, when a doc writes ya a script for pain meds and wooshes you out the door after receiving you check, be WARY!!!! If things get outa hand, you and the doc will be communicating and can work on that when and if the time comes.
Well wishes, kim
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sueellen83
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Re: NEUROLOGIST SAID.....
« Reply #2 on: Nov 6th, 2002, 7:45pm » |
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Sounds like the visit went well.
Hope the Verapamil works for you. I was on Prednisone for the first couple of weeks when I stared taking the Verapamil so I don't know how long it takes to start working. Give it a chance though. Lithium has to be monitored closely so you don't get toxic.
Wishing you PFNAD!!!!
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Mark C
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Re: NEUROLOGIST SAID.....
« Reply #3 on: Nov 6th, 2002, 7:50pm » |
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Glad to hear the OV went pretty well. One thing I have taken in the past, several times, is Medrol, or methylprednisolne, a steroid. Given in a tapered dosage it has lessened my cycle long enough for other meds to kick in. It is cheap and for me the side effects are bearable.
I am curious, how did it feel to be armed and ready when you went in. Do you think being prepared made the visit more productive? Did the Dr appear more concerned because you are taking an active role in your treatment or was he intimidated. I believe when you are educated and prepared the Drs tend to pay a little more attention to ya. Just a thought. Good luck David.
Mark
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ShariRae
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Re: NEUROLOGIST SAID.....
« Reply #4 on: Nov 6th, 2002, 8:30pm » |
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David,
When I was finally properly diagnosed, i too was given Verapamil and was thrilled with it. It started to end the cycle within a week of starting it. I continued it 180X2 day for a few months...then I started to cut the dosage down till I was comfortable that the cycle is gone. Some chronics stay on it all the time. but being episodic I was able to quit it all together...and prepare for the next visit.. Heres hopin it kicks in & works just as well for you.
Huggss
Shari
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Charlie
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Re: NEUROLOGIST SAID.....
« Reply #5 on: Nov 6th, 2002, 8:50pm » |
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Good for you and it looks like you're on the right track.
I can't speak about drugs as I have too little experience. I just wanted let you know I'm glad it went well.
Charlie
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Bob P
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Re: NEUROLOGIST SAID.....
« Reply #6 on: Nov 6th, 2002, 8:54pm » |
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Actually your verap dose is quite high for a starting dose. 720 mg/day. They usually start you at 240 or 360 and increase the dose by 120mg every week or so until you hit 960mg or the headaches stop or the side effects get too great. Watch for constipation, it's quite common.
The Medrol dose pack is a good suggestion. For me it stops the attacks the first day and as I taper off they come back. At least it would give you 3 or 4 days to get the verap up to full strength in your system.
At 720mg you shold see something happening real soon.
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Marc
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Re: NEUROLOGIST SAID.....
« Reply #7 on: Nov 6th, 2002, 8:56pm » |
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David,
Sounds like you did OK finding a Doc who knew enough to use a high dose of Verapamil but I'm a little surprised that he started you at that high - hope you tolerate it well!
For me, it took almost a week to kick in.
Good luck,
Marc
(Damn, slow typing got me again! Sorry Bob)
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| « Last Edit: Nov 6th, 2002, 8:57pm by Marc » |
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don
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Sounds like you found a neuro that has a clue.
You might want to list him over on the OUCH site.
Verap takes about a week to become theraputic and I agree with Bob, that is a high starting dosage, keep an eye on the blood pressure.
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Bob P
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Re: NEUROLOGIST SAID.....
« Reply #9 on: Nov 6th, 2002, 9:01pm » |
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Marc,
Next time I'm typing, I'll hollar out the front door to let you know.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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kim
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Re: NEUROLOGIST SAID.....
« Reply #10 on: Nov 6th, 2002, 9:09pm » |
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By the way ;DAny time ya have difficulty with dosages, just ask! 
Believe it or not, my doc and I had many a confusin discussion of my current dosages! LOL.
I really think it's genetic. 
Thanks to the real brains about, and GOOD LUCK! Keep posting. 
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domm
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Re: NEUROLOGIST SAID.....
« Reply #11 on: Nov 6th, 2002, 9:28pm » |
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David - I started at 120 mg/day and after a week, upped it to 180 mg/day. Within 10 days, I was PF, very minor shadows, but they eventually disappeared. I guess I am one of those lucky ones that doesn't need higher doses.
Watch the side effects........ eat lots of roughage.
Good luck
domm
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captdshea
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Re: NEUROLOGIST SAID.....
« Reply #12 on: Nov 6th, 2002, 10:05pm » |
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Hey Marc C.
I can tell you for me going in prepared felt great, Any
thing starting with nuro.. makes me A little jittery,
Puting that aside, I think the Doc. was pleased I had
all my ducks in A row. Also I had with me printed material
from O.U.C.H he was pleased to see that and showed
an interest in the Organnization (sp?) Like you, I think
many doc.s are happy to see someone doing the grinding to find help for him or herself.
Now I'm A little worried about the dose, sounds high to
some here. Do you guys think I should use one Aday.
Let me back up here a minute.........
The bottle says 1-2 tablets by mounth daily...
Verapamil er 240mg tabs ( myla).. So it is 240mg not
360mg. That would still be A little high 480mg daily.
What do you guys think?
Again thanks for everyones help. Not only did you show me the way with your post here, I found A HOSPITAL
I can go to for help when its bad.. ( at night )
And I feel like there are friends here I can go to for help, advice
and knowlege here on this MB... iTS a GREAT FAMILY!
I'll also do my part to spread the news, and educate as
many as I can for this course. One good think about
playing golf is the daily and close contact with many
doctors in the this community and other communitys
So next time I find myself paired with a couple docs.
in the locale pro-ams or charity events, I'll slide O.u.c.h.
and the clusterhead community into the conversation at some point in time, You have my word on that.
Thanks again everyone,
David
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cootie
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Re: NEUROLOGIST SAID.....
« Reply #13 on: Nov 6th, 2002, 10:42pm » |
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Hi....Sooooo much to learn on here.......Brad's script for Virapimil is 180 mg once a day (in the morning)...that sounds sorta low doesn't it and maybe it should be twice a day....bottle says once......hmmmm maybe I should bring that up with the doc....he's cool and I can email him and he actually emails back purdy fast !!!!! So should he be takeing it twice a day I wonder at that dose.......thanks....good luck all !! He uses imitrex also but has got his cycle under control rite now it seems so far so he stopped it recently....(never leave home without it tho ).........cootie >^..^<
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Bob P
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Re: NEUROLOGIST SAID.....
« Reply #14 on: Nov 6th, 2002, 11:20pm » |
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On verap dosage, Goadsby's team says:
"verapamil
Verapamil is the preventative drug of choice in both episodic and chronic CH. Clinical experience has demonstrated that higher doses than those used in cardiological indications are needed, so outpatient assessment and follow-up is appropriate. The dose is increased until the cluster attacks are suppressed, side-effects intervene or the maximum dose of 960mg daily is achieved."
Doc Robinson, at the Vancouver convention, said that you have to take it at doses so high that it would give a cardiologist a heart attack. He has patients as high as 1080mg/day.
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cootie
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Re: NEUROLOGIST SAID.....
« Reply #15 on: Nov 6th, 2002, 11:31pm » |
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WOW....so maybe that's why he had so many shadows all day long at first cuz he wasn't takeing enuff Verapimil a day.....did that make sense......would it cause that.....he said it took a while to kick in and was on imitrex but he'd mentiond the shadow headaces danceing all over his head 'all day long' and kept him scared an attack was comeing.....took several weeks to get them down but he was only takeing the 180 mg total a day. Welp.....learned sumthin else new today...wasn't payin attention to dosage cuz him and the doc disussed that one. Our doc has a healthy interest in CH's enuff to try to stay updated more then most......thanks for the info !!!!!! Cootie >^..^<
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rumplestiltskin
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i began to see Painfree effects in a week...continued to up dosages from 160 to 300/day till there were NO...and I do mean NO pain events. I stayed that way fer about 17 months. A few weeks ago I got my first pain event...immediatly upped to 240 2X/day...I am once again totally painfree after only one full blown ,albeit moderate, Cluster and a few shadow creatures.
den
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Sweet_Landings
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Re: NEUROLOGIST SAID.....
« Reply #17 on: Nov 7th, 2002, 8:06am » |
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David,
So happy to hear that you have found some help! That in itself can be such a HUGE relief!
I took 240mg of Verapamil a day for a while (6 or 8 months) but it didn't do a lot for me. But now we know I have CPH and not CH, so I suppose that is why it never did a lot for me. It did reduce the intensity of the pain for me and at the time that was a blessing in itself.
Sounds like you have an informed neuro and that is a plus! Good luck to you and hope you are pain free real soon!
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Peppermint
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Re: NEUROLOGIST SAID.....
« Reply #18 on: Nov 7th, 2002, 9:32am » |
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David,
Glad to hear that you found a neuro who seems ready, and willing to help - I'm sure it helped that you went in there with your own weapons..
Kim made a good point about the Lithium - that is a preventative combination that seems to have a good success rate, however, the Verapmil may work for you on its own.
Maybe I missed something on another post, but I didn't see you mention anything about 02.... do you ever use it? ???
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captdshea
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Re: NEUROLOGIST SAID.....
« Reply #19 on: Nov 7th, 2002, 9:46am » |
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Hi pepermint,
This is the first time I have been treated for CH all other
attemps I was treated for sinusits. Not knowing any
better I did the meds. perscribed.
My cycles were not present for the last 5 yrs. Only this
fall period they have return, about 3wks. now. I'm not
takeing as of yet anything to abort the pain. My attacks
this time around are only lasting 20 to 30 mins. Kip 7
however last night was burtal. I guess the Beast was
sending A message. Well I've just begun to fight these
attacks and all meds. and rituals will be availeble now.
I find some comfort in that.
Thanks
David
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Margi
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Re: NEUROLOGIST SAID.....
« Reply #20 on: Nov 7th, 2002, 9:50am » |
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Hi David,
I believe that my husband's doctor started him on the same dose of Verapamil as yours has. Verapamil actually did nothing for Mike, at ANY dose and he did get up to 960 a day at one point (I think?). He tried both the regular and the sustained release version, with no positive results.
However, once he combined it with lithium, his cycle did end shortly thereafter. Kim's got a good suggestion. Mike started at 600mg lithium for a few days then ramped up to 900mg daily, with no noticeable side effects (other than pain freedom after a couple of weeks!). Sure something worth talking to your doctor about. I believe Jonny has had the same results, although he is (I think) at 600 mgs. of lithium daily.
Hope you find your special combination soon, David - we're all pulling for ya.
And, Peppermint, I gotta say.... for a suffererless "supporter", you sure DO do your homework. Man, if I didn't have a sufferer, I never would have even looked into this stuff!
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Peppermint
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Re: NEUROLOGIST SAID.....
« Reply #21 on: Nov 7th, 2002, 10:22am » |
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Margi - I do do my homework... but my own long-distance clusterhead "Angel" takes Verapmil @280 (will be going up to 380 shortly if he can convince his neuro) combined with Lithium (don't remember his dosage). This is the ONLY thing that has truly worked for him. Maxalt preventative with 02..currently on Prednisone, two weeks left to taper completely off. He's more than reason enough for me to keep on top of this stuff.
David, I'm glad you're finally able to arm yourself against your HA... as for the 02, think about it.
Not4Hire posted an Oxygen Primer on the board here recently - it is pretty thorough and he worked with Jonny on getting the details streamlined. Take a look at it, it is a clear concise read for using 02. You may want to consider having the 02 available if you should you need it.
PFDAN David....
Peppermint 
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Margi
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Re: NEUROLOGIST SAID.....
« Reply #22 on: Nov 7th, 2002, 10:28am » |
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oh sorry Peppermint. i had thought you and Angel were no longer together. You should also encourage Angel to post here. It always helps clusterheads to meet others like themselves.
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| « Last Edit: Nov 7th, 2002, 10:29am by Margi » |
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captdshea
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Re: NEUROLOGIST SAID.....
« Reply #23 on: Nov 7th, 2002, 10:35am » |
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Peppermint and Margie- Thanks for your support, You
are not only supporting your spouse, But, many others
here included in that is myself. I thank you for that.
Best to you and your spouse, Thanks again for being here.
David
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Margi
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Re: NEUROLOGIST SAID.....
« Reply #24 on: Nov 7th, 2002, 10:39am » |
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Thanks, David.
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