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Title: NEUROLOGIST SAID..... Post by David Shea on Nov 6th, 2002, 7:17pm 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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Title: Re: NEUROLOGIST SAID..... Post by kim on Nov 6th, 2002, 7:33pm 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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Title: Re: NEUROLOGIST SAID..... Post by sueellen83 on Nov 6th, 2002, 7:45pm 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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Title: Re: NEUROLOGIST SAID..... Post by Mark C on Nov 6th, 2002, 7:50pm 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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Title: Re: NEUROLOGIST SAID..... Post by ShariRae on Nov 6th, 2002, 8:30pm 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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Title: Re: NEUROLOGIST SAID..... Post by Charlie on Nov 6th, 2002, 8:50pm 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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Title: Re: NEUROLOGIST SAID..... Post by Bob P on Nov 6th, 2002, 8:54pm 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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Title: Re: NEUROLOGIST SAID..... Post by Marc on Nov 6th, 2002, 8:56pm 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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Title: Re: NEUROLOGIST SAID..... Post by don on Nov 6th, 2002, 9:00pm 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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Title: Re: NEUROLOGIST SAID..... Post by Bob P on Nov 6th, 2002, 9:01pm Marc, Next time I'm typing, I'll hollar out the front door to let you know. |
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Title: Re: NEUROLOGIST SAID..... Post by kim on Nov 6th, 2002, 9:09pm By the way ;DAny time ya have difficulty with dosages, just ask! :D 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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Title: Re: NEUROLOGIST SAID..... Post by domm on Nov 6th, 2002, 9:28pm 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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Title: Re: NEUROLOGIST SAID..... Post by David Shea on Nov 6th, 2002, 10:05pm 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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Title: Re: NEUROLOGIST SAID..... Post by cootie on Nov 6th, 2002, 10:42pm 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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Title: Re: NEUROLOGIST SAID..... Post by Bob P on Nov 6th, 2002, 11:20pm 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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Title: Re: NEUROLOGIST SAID..... Post by cootie on Nov 6th, 2002, 11:31pm 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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Title: vera Post by rumplestiltskin on Nov 7th, 2002, 2:43am 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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Title: Re: NEUROLOGIST SAID..... Post by Sweet_Landings on Nov 7th, 2002, 8:06am 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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Title: Re: NEUROLOGIST SAID..... Post by Peppermint on Nov 7th, 2002, 9:32am 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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Title: Re: NEUROLOGIST SAID..... Post by David Shea on Nov 7th, 2002, 9:46am 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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Title: Re: NEUROLOGIST SAID..... Post by Margi on Nov 7th, 2002, 9:50am 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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Title: Re: NEUROLOGIST SAID..... Post by Peppermint on Nov 7th, 2002, 10:22am 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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Title: Re: NEUROLOGIST SAID..... Post by Margi on Nov 7th, 2002, 10:28am 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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Title: Re: NEUROLOGIST SAID..... Post by David Shea on Nov 7th, 2002, 10:35am 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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Title: Re: NEUROLOGIST SAID..... Post by Margi on Nov 7th, 2002, 10:39am Thanks, David. :) |
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Title: Re: NEUROLOGIST SAID..... Post by Peppermint on Nov 7th, 2002, 10:43am It's okay Margi... I don't really know how to explain our "status"... its a tricky situation really. *sigh* You are right & actually, I have tried to get him to come here...trying to stoke more interest, however, he's content with having me visit here for him... and I would rather give him info from the threads, etc. than not give him any info at all. He used to visit back on the old board.. but tells me he found it too depressing to always be immersed in the world of CH...I guess everyone is different. Doesn't stop me from trying and being a nuisance to him about it though... :) |
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Title: Re: NEUROLOGIST SAID..... Post by sueellen83 on Nov 7th, 2002, 11:17am David, I started out on 480mg a day and had no problem with the Verapamil. Except constipation!!! >:( >:( Good luck. |
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Title: Re: NEUROLOGIST SAID..... Post by Ree on Nov 7th, 2002, 6:38pm Hey Pep... I can't get over the idea of your "Angel" being depressed coming here... Most of the support and ideas are taken with such humor in this phenominal (sp?) Cluster site... There is also a soft side to CH and rather than wallowing in the pain of CH... We have a family here that supports comforts and loves one another... with the acception of a few hazing events lol... Tell him to try again... wasn't it him that gave you the link in the first place??? If Dave could type he would be driving you all crazy... He is really dying to talk to a cluster head personally. Maybe you could hook him up with one of the guys to talk to "sufferer to sufferer" just a suggestion... ree |
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Title: Re: NEUROLOGIST SAID..... Post by Peppermint on Nov 7th, 2002, 6:40pm Quote:
David, didn't get to say this earlier.... but you are welcome... :)...glad if what I said helps in any way. MINT ;) |
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Title: Re: NEUROLOGIST SAID..... Post by Margi on Nov 8th, 2002, 12:38pm Good suggestion, Ree.... it would help "Angel" soooo much to post here and read what has been written. Peppermint, I'm sure he'd love seeing all your posts too. He'd see how hard you're trying to make a place for yourself in this community, with the intention of helping him in the long run, right? :) What's his screen name, Peppermint? We can watch out for him and welcome him if he does ever post. These clusterheads have an immediate bond that is totally amazing. It can only help him. |
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Title: Re: NEUROLOGIST SAID..... Post by Peppermint on Nov 8th, 2002, 3:23pm I wish I could agree with you. 1. He doesn't post. 2. No, he is very private...visited here as a guest. so my guess is he doesn't sign in, doesn't have a "name" - yes... I said "guess" 3. He knows I post here, is aware of what i'm doing and thinks its great..yadda,yadda,yadda...but we've agreed I will not reveal my posting identity to him so that I will feel free to say what I have to say. 4. I've tried, and sometimes I still try. I can't force the guy.. especially by thousands of miles away. This is pretty much a given. He did "talk" to Jonny once...a couple years ago.. it was a good conversation....but it ended there. 5. As for "making a place for myself" here - just trying to do what comes from the heart and giving back the love i'm getting. That's it. |
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Title: Re: NEUROLOGIST SAID..... Post by Jackie on Nov 8th, 2002, 5:22pm Peppermint, I've read and reread your #3 on the above post. I'm not sure I understand what you mean. ??? Are you saying that this "Angel" person doesn't know his cyber supporter is called "Peppermint" ::) Jacks 8) |
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Title: Re: NEUROLOGIST SAID..... Post by David Shea on Nov 8th, 2002, 8:54pm Hey REE- Tell Dave typing is easy, When you do it like me. search and peck. than you search and peck again. LOL here, you are right about that..... PFDAN David |
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Title: Re: NEUROLOGIST SAID..... Post by Peppermint on Nov 9th, 2002, 1:40am Yes Jacks. |
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Title: Re: NEUROLOGIST SAID..... Post by Elaine on Nov 11th, 2002, 6:21pm David it took about two weeks for my verapamil to kick in. I had to play with the dose the first few months to get the dose that helped me. Pepermint if I was your friend and I read this thread I think I would figure out who you are! You might of blown your cover with him. |
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Title: Re: NEUROLOGIST SAID..... Post by David Shea on Nov 11th, 2002, 6:31pm Elaine, How did you play with the dose? I was thinking It was working for me, Now I'm not sure. I did go one night with out be woken up. Put the HA persisted the next day and again that night. Its been five days on the verp. Wait and see game, I guess, Thanks for everyones input to my question. Still hanging! David |
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Title: Re: NEUROLOGIST SAID..... Post by Elaine on Nov 11th, 2002, 7:04pm I upped my dose I would would take it at night in the morning and at lunch sometimes in between I raise it, but I raise it after a month. I did give it time to work before I raised and I did go to the fire station and have my blood pressure checked each week. Thats important when you play with it. But each time you raise it give it a couple of weeks to work before raising it again. ALWAYS keep that blood pressure checked. |
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Title: Re: NEUROLOGIST SAID..... Post by Peppermint on Nov 11th, 2002, 7:21pm Quote:
Elaine - I appreciate you pointing that out here. I realize this ....and it really bothers me.... it seems I've had to explain more than is really necessary. I feel I've been beating a dead horse. :-/ :-[ |
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Title: Re: NEUROLOGIST SAID..... Post by David Shea on Nov 11th, 2002, 8:16pm Jacks, Guess I have to give it more time. I've been checking my BP daily. Neuro ask me to keep A log. I was takeing norvase 5mg for one week before seeing the neuro. for the HA. BP was borderline high, Than down to normal levels. Today its back up there. High as it has ever been. Lot of pain today and last night as well. Thanks for your post. I know now I will have to give it lots more time. David |
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Title: Re: NEUROLOGIST SAID..... Post by Jim R on Nov 11th, 2002, 9:10pm Hey David, I'm on 240 mg. verapamil x 2/day, up from just 240. Sounds okay to me and it should work within 7 days latest. Actually, I think I've gone out of cycle, so I've cut back to just 240/day. Glad you had a good experience at the neuro's. Hang in there bro and it'll kick in soon, I think. - Jim R |
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Title: Re: NEUROLOGIST SAID..... Post by David Shea on Nov 11th, 2002, 10:22pm Thanks Jim, I hanging in there, hope something will happen soon. I have told you I went six yrs. with out HA. I remember saying you did as well. This cycle has turned bad in the last few days. tough sum-a-bitch that beast. Glad your fla, vacation went well Jim. And very happy your cycle is at its end. Later, David |
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