Sarah Tee Posted July 14, 2023 Report Share Posted July 14, 2023 I’m sure we’ve all been there, although maybe not so much with our autonomic specialists. I asked my current specialist a year ago, at our first appointment, about trying a calcium-channel blocker because I suspected I could have OCHOS and some people with OCHOS have improved this way. He pooh-poohed me, said “We don’t give people with OI calcium channel blockers”, didn’t seem to know what OCHOS was, and didn’t ask me to expand on it or look it up himself. I have since realised that some people with POTS and other forms of dysautonomia are given CCBs, so even without the knowledge of OCHOS, what he said was wrong. Grrrr! So now I’ve tried a calcium channel blocker, and it does help. So I can safely assume that I do have OCHOS (not that that means all that much, as it is a syndrome, and there’s nothing known about the cause, except the general context of what we know about autonomic OI syndromes). I know it’s harmful to stew on things. So I am going to let myself feel angry, sad and annoyed for a few days, then move past it so I can tell him all this calmly and politely at my next appointment. Any advice on how to be graceful and mature would be most welcome! OCHOS links: Press release-level info: https://www.brighamandwomensfaulkner.org/about-bwfh/news/expanded-autonomic-testing-helps-to-pinpoint-cases-of-orthostatic-intolerance The research study by Dr Novak: https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/26909037/ (I think other people have looked at this too – sorry, my memory! – but I believe Dr Novak was the first to investigate it thoroughly in a big group of patients and name it. I am sure he will have acknowledged earlier research in his footnotes, if you would like to read further.) Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 14, 2023 Report Share Posted July 14, 2023 @Sarah Tee I am on a CCB for HPOTS and my autonomic specialist was the one who first prescribed it, many years ago. I know you dont have POTS due to your HR not being elevated, but the principle is the same. Even today doctors that are not familiar with my case tell me if I would stop the CCB I would not need IV fluids. Haha, the days I forget to take it I am horribly ill! ---- As to how to address the doctor to diplomatically "rub it in" ... I have no clue! I have tried in the past to go back and explain to them why their approach or suggestion to my treatment was wrong but it never ended good. Even if it is perfectly worded most docs become very defensive when their ego gets bruised. THEY went to med school and THEY know what to do, WE just need to submissively be thankful for their time. Lol. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 14, 2023 Author Report Share Posted July 14, 2023 @Pistol, if he doesn’t respond well, and won’t get on board, I will go back to my old specialist. He is further away (that’s why I changed to this new one). Will make sure he is open to the idea of OCHOS etc. My current GP, while sometimes doing/saying a few odd things, will probably be supportive. My theory for a CCB helping me is that is has stopped the blood flow being squeezed off to my head by incorrect vasoconstriction when upright. Is that your thinking too? Do you get cold hands and feet with the weather? (I don’t have seasonal variation, except that hot weather is bad, but so is a hot room any time.) Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 14, 2023 Report Share Posted July 14, 2023 16 minutes ago, Sarah Tee said: My theory for a CCB helping me is that is has stopped the blood flow being squeezed off to my head by incorrect vasoconstriction when upright. Your theory makes me think of doing a trial of low dose of isosorbide would help. if i recall you have plenty of blood pressure to spare. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 14, 2023 Report Share Posted July 14, 2023 3 hours ago, Sarah Tee said: My theory for a CCB helping me is that is has stopped the blood flow being squeezed off to my head by incorrect vasoconstriction when upright. Is that your thinking too? Do you get cold hands and feet with the weather? @Sarah Tee Yes, and Yes. Both apply to my case. Since my SNS overcompensates for BP fluctuations I have ( always had ) problems with cold feet ( Raynauds diagnosis ) as well as Prinzmetal angina ( constricted coronary vessels ). Both these diagnoses were confirmed by angiogram and heartcath. The excessive constriction causes me to not have adequate bloodflow to the brain, and the CCB in addition to IV fluids improves this. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted July 14, 2023 Report Share Posted July 14, 2023 8 hours ago, Pistol said: @Sarah Tee I am on a CCB for HPOTS and my autonomic specialist was the one who first prescribed it, many years ago. I know you dont have POTS due to your HR not being elevated, but the principle is the same. Even today doctors that are not familiar with my case tell me if I would stop the CCB I would not need IV fluids. Haha, the days I forget to take it I am horribly ill! ---- As to how to address the doctor to diplomatically "rub it in" ... I have no clue! I have tried in the past to go back and explain to them why their approach or suggestion to my treatment was wrong but it never ended good. Even if it is perfectly worded most docs become very defensive when their ego gets bruised. THEY went to med school and THEY know what to do, WE just need to submissively be thankful for their time. Lol. Oh, for the times an ill-informed doctor or nurse told me that I am hypotensive because of my beta blocker! Oh… that’s why I was super hypotensive before I started it, but had a HR of 180 and intolerable pounding, thanks! Almost none of my doctors have heard of HYCH, OCHOS, etc. Dr. Novak certainly does He had me try galantamine, which gave me so much worsened insomnia that I couldn’t really trial it properly. I didn’t feel a big difference while I was on it, but maybe I needed a higher dose. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 17, 2023 Author Report Share Posted July 17, 2023 @MikeO, thank you, I will note that in my “possible treatments” file. Further options are very welcome! I am feeling a bit more hopeful of finding something that will dilate my blood vessels without troublesome side effects. I will update my main thread soon. Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted July 17, 2023 Report Share Posted July 17, 2023 I'm so sorry you're in the position of knowing more about this than your specialist. More importantly, I'm sorry that he seems so unwilling to listen and learn. I hope that talking about it helps ease the frustration. If only doctors knew how much harm they cause when they are so dismissive --and then we get a bill for it! I hope that you are feeling better about the situation after some time. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 17, 2023 Author Report Share Posted July 17, 2023 Thanks, @kmichaelson. He has been open to me providing info on some topics, but closed on others. He has been helpful on getting some treatments such as infusions, but unhelpful on others. It has been confusing! I am going to have one more try at my next appointment. Feeling better regardless! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted May 11 Author Report Share Posted May 11 @MikeO, I’m finally getting round to following up on your suggestion about isosorbide with my specialist. I know it didn’t work for you, but I was wondering what dose you took. It looks like in Australia the smallest I can get is isosorbide mononitrate 60mg, which can’t be divided because it is a slow-release tablet. I would need a slow-release version given that I’m not taking it for angina, but 60mg seems a bit high to start with. US sources mention 30mg as a starting dose. There is also isosorbide dinitrate available here, but it is sublingual/immediate release, so not suitable for me. Quote Link to comment Share on other sites More sharing options...
MikeO Posted May 11 Report Share Posted May 11 16 minutes ago, Sarah Tee said: @MikeO, I’m finally getting round to following up on your suggestion about isosorbide with my specialist. I know it didn’t work for you, but I was wondering what dose you took. It looks like in Australia the smallest I can get is isosorbide mononitrate 60mg, which can’t be divided because it is a slow-release tablet. I would need a slow-release version given that I’m not taking it for angina, but 60mg seems a bit high to start with. US sources mention 30mg as a starting dose. There is also isosorbide dinitrate available here, but it is sublingual/immediate release, so not suitable for me. Been awhile since i took the isosorbide but if my memory serves correctly it was the 30mg tab that i split. 30mg for me was a bit much but then i am/was taking other meds for blood pressure. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted May 11 Author Report Share Posted May 11 Thanks, @MikeO, that’s very helpful! Quote Link to comment Share on other sites More sharing options...
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