Sarah Tee Posted August 9, 2023 Report Share Posted August 9, 2023 Appointment with my specialist tomorrow at which I need to persuade him that I have vasoconstrictive-type OCHOS. Have prepared notes. Strategy is to focus on “Look what we’ve discovered this past year, it overturns our assumptions doesn’t it?” rather than “You assumed things without asking enough questions and sometimes even against the evidence”. I seem to be in his good books at the moment, so I hope he has his listening ears on. Will report back tomorrow night! Quote Link to comment Share on other sites More sharing options...
MikeO Posted August 9, 2023 Report Share Posted August 9, 2023 Good Luck! and best wishes. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted August 9, 2023 Author Report Share Posted August 9, 2023 Back story: I found out that I had this type of OCHOS by happening to take a calcium channel blocker for my blood pressure. After being on it for a couple of days, I started to feel much better. No more horrid drained feeling in head, less fatigue, able to shower and cook a meal without crying with exhaustion, doing regular exercise for a week, etc. Long story short: vasoconstrictive OCHOS is the only condition that matches my symptoms and improves with CCBs. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted August 9, 2023 Report Share Posted August 9, 2023 2 hours ago, Sarah Tee said: Back story: I found out that I had this type of OCHOS by happening to take a calcium channel blocker for my blood pressure. After being on it for a couple of days, I started to feel much better. No more horrid drained feeling in head, less fatigue, able to shower and cook a meal without crying with exhaustion, doing regular exercise for a week, etc. Long story short: vasoconstrictive OCHOS is the only condition that matches my symptoms and improves with CCBs. Good luck! You can also say something about CCBs being benign and that they are not exactly a drug of abuse. My specialist thinks galantamine is the gold standard for this type of thing, but my PCP says Nimotop is also very good for cerebral use. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted August 10, 2023 Author Report Share Posted August 10, 2023 It all went well! My specialist was in a receptive mood. I am trying diltiazem and will go back in two months for another appt. Can’t quite believe it! @RecipeForDisaster, I am going to ask about nimodipine next time. I have a feeling it might work better. I remember you mentioned it. I don’t know whether my specialist would prescribe it – I might need to see a neurologist who uses it for migraines to parlay my way in. But if I’m feeling better on diltiazem or similar, this will be easy to tackle. Thanks @MikeO. Heading home now. Tired but pleased with how it went. Hoping diltiazem will be better for me than amlodipine. It is shorter acting so shouldn’t keep me awake if I get the timing right. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted August 10, 2023 Report Share Posted August 10, 2023 That’s wonderful! I should try a little diltiazem again. I have 30mg capsules. I was on it for rate control originally, but I did better with a beta blocker for that. I can take them together and got the go-ahead. I tried 30mg up to 4 times a day and then switched to 120mg ER. I didn’t remember that nimodipine was good for migraines. I could use that too! Quote Link to comment Share on other sites More sharing options...
MikeO Posted August 10, 2023 Report Share Posted August 10, 2023 @Sarah Teehappy to hear you had a productive office visit. crossing my fingers that the diltiazem work out better for you. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted August 10, 2023 Report Share Posted August 10, 2023 4 hours ago, Sarah Tee said: t all went well! My specialist was in a receptive mood. Major win! I am so glad to hear it. Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted August 12, 2023 Report Share Posted August 12, 2023 Good job, Sarah, and I'm so happy for your good news. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted August 12, 2023 Report Share Posted August 12, 2023 Good news. It's frustrating how we have to treat our doctors very delicately sometimes. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted August 16, 2023 Author Report Share Posted August 16, 2023 @kmichaelson, @Jyoti, @MTRJ75, thank you for your kind thoughts. I have started the diltiazem. Specialist wanted me to start with a low dose and increase very slowly, in fortnightly increments. Of course I am having teething troubles, but I’m trying very hard not to get discouraged or impatient. It is helping my symptoms somewhat. At the moment I feel okay if I take things very quietly. As the dose increases, I should be able to do a little more. I am keen to tidy up the garden, buy some new clothes, cook a few meals … so many ordinary things. But I mustn’t get carried away and overdo things before I’m ready. I’m guessing there will be tears and angst and “Who am I now?” at all the lost time. I hope there will also be some good feelings 🙂 Quote Link to comment Share on other sites More sharing options...
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