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Title: Neurologist Appointment Post by williamsmh on Mar 28th, 2002, 9:50pm Ok.. I have an appointment with a neurologist set for the 17th (got it moved up a week) and am on a waiting list for cancelations.... What should I look into for my clusters and what should I avoid? My list includes the following: 1. How do I get more imitrex even though my insurance company is being stupid? 2. Can he prescribe a better oxygen system? And one that is more portable? 3. Should I be on something other than prozac since it doesn't seem to be doing anything?? 4. Should I be on a higher dose of verapomil? 5. Should I consider sansert? I took depacote once and it made my headaches worse! What else should I be considering????? I'm afraid of getting in the appointment and not asking all the questions I should and regretting it. This guy is the head of a local headache clinic and he is really hard to get into see. Mark |
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Title: Re: Neurologist Appointment Post by nancyc on Mar 28th, 2002, 10:14pm Good questions you have so far....I took a folder in with all kinds of articles, testimonials from 4 respected clusterheads on this mb about how chs had affected their lives(Riccardo, Elaine, Trip, and Carl D) and a list of meds used for chs when i went to my appt. with my new neuro...Ofcourse, along with my OUCH brochures. I even researched her on the internet and knew what she looked like before I walked in the door...I talked with Thomas , our Doc on the mb from Germany and got some ideas...I talked with Rodolpho from Italy about the new experimental drug, Aricept..I got emails I took in from Bob W on the mb...all of these people helped me tremendously....I took in my emails from these clusterheads...I took in Doc Goadsby's study he is doing now...I was so fortunate that my neuro sat down with me for about an hour and discussed all my material...I pray the same for you...anyway I can help you, just email me....and good luck...One last thing, Form a partnership with your neuro..if he is not willing to do this and let you be a part of your treatment, find one that will... |
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Title: Re: Neurologist Appointment Post by nancyc on Mar 28th, 2002, 10:20pm PS.when looking at the ch drug list, my neuro said she does not use sansert at all...i have never tried it and really dont want to... |
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Title: Re: Neurologist Appointment Post by maria on Mar 28th, 2002, 11:05pm Nancy, shrooms did not work for you? Maria :) |
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Title: Re: Neurologist Appointment Post by williamsmh on Mar 29th, 2002, 8:08am Thanks for the input.... I'm hoping this appointment is a good one and I get some kind of help! Mark |
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Title: Re: Neurologist Appointment Post by nancyc on Mar 29th, 2002, 8:48am Maria, shrooms did work for me....but keep in mind that i am chronic and also a nurse...when you are chronic, you have to dose alot more...one time I got 9 hours pf, another time several weeks...Considering my situation, i had to chose another route...IF I lived somewhere where shrooms were legal and readily available, this would be my choice of treatment...I encourage anyone who has not tried them to do so....But as a chronic, I decided to continue to search for something that may put me in remission for a long period...Hope this is not too confusing..will be happy to talk to you via email anytime. :) |
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Title: Re: Neurologist Appointment Post by chuckles8569 on Mar 29th, 2002, 9:21am You might want to consider asking about lithium. I've been on it--low dose--for over 2 years, and I don't know if it is coincidence or not but I been almost h/a free for this time period. It's also fairly cheap. |
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Title: Re: Neurologist Appointment Post by NotH20 on Mar 29th, 2002, 12:02pm Mark - also ask about some of the anti seizure drugs such as Keppra and Topomax along with the higher dosages of Verap.........DHE injections too as another abortive instead of Imitrex injections (which may be easier to get and your insurance may pay for more of it if the script is written correctly)......and one more suggestion is Zomig and Maxalt...... Good luck - I'm glad you were able to get that appt earlier...... Keep us all posted on your progress....it's better to walk into your appt with too much info than not enough..... NotH20 |
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Title: Re: Neurologist Appointment Post by williamsmh on Mar 29th, 2002, 8:28pm Thanks for all your suggestions... I will ask about Lithium, Keppra, & Toppomax. I will also ask about DHE. I'm on a really low dose of verapamil (the starting one)... so I will be asking about that, too. Does it lower your blood preasure considerably at high doses because mine is already low? I did try Depcote once, but it gave me more headaches. Does anyone use anti-depressants. Paxil and Celexa didn't stop my headaches, but they seemed to cut down the # of them - on prozac I'm having the worst cycle I've had in years. I just got new o2 masks in the mail. They have the bag and should give me the 100% oxygen instead of the "mix" I was using. So... I'm on the right track... even the diluted oxygen helped with some of the headaches as long as I used early enough. Thanks again...Mark |
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Title: Re: Neurologist Appointment Post by NotH20 on Mar 30th, 2002, 9:17am Mark, in my case I have normal to low blood pressure anyway....while on Verap my blood pressure goes down considerably. I take Calan SR 240 2 times per day (have never gone higher than that dosage) and my blood pressure at times can get as low in the ballpark of 60/40...........if you continue to increase your meds you just need to have your BP monitored - I would not be real concerned at this point until you notice a drastic change. Never been on anti-dep. that you mentioned so I am of no help there - sorry. You should notice a change in the amount of time that you get some relief w/ the O2 now that you have the correct mask......congrats! :D Sounds like you are on the right track - keep the faith!!! NotH20 |
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