Wanderland Posted January 4, 2023 Report Share Posted January 4, 2023 Finishing up my testing and here are my "best guess" conclusions based on my historical testing and most recent testing: Orthostatic Intolerance, General Dysautonomia, Restless Leg Syndrome, low Ferritin/Iron. My question is: is it worth asking about medication for the orthostatic intolerance or better to go without? I am usually sensitive to side effects of medication and any steroid medication I get the moon face and immediate weight gain of like 10 pounds in a week. I have a long history with water retention to managing my weight has been a challenge over the last 8 years. Just trying to get an idea of what questions to ask my cardiologist if medications come into question or if I'm better off not taking medication and just making the same lifestyle adjustments I've been doing already. I appreciate anyone's experience in asking "good" questions about medication or any helpful warnings about side effects, especially weight gain. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 5, 2023 Report Share Posted January 5, 2023 I have OI with normal blood pressure and heart rate, even during poor man's TTT. Is that how yours goes too? I would say it is worth cautiously trying any medication that can help OI, can be stopped rapidly, isn't contraindicated by your medical history, and is unlikely to have lasting negative effects. That has been my approach with my specialist. I have tried just about everything listed below, bar a couple that are too risky, not available in Australia, or contraindicated for me. Some of these will not be suitable for you given that water retention is a problem. Even something seemingly harmless like raising your bedhead might affect water retention. Just listing everything anyway because if your specialist raises unsuitable options you can be ready to say "Nope, not for me". 1. Increase fluid retention and/or blood volume extra salt and water raising bedhead fludrocortisone (Florinef) – is a steroid but different class; can cause water retention desmopressin saline infusions more obscure options such as EPO, albumin infusions (see list linked below) 2. Increase venous tone (vasoconstriction) midodrine some others (see list and lecture linked below) 3. Stop blood pooling in lower body compression garment that covers the abdomen up to the waist, e.g. tights, leggings clenching and unclenching large muscles (thigh, buttock) before standing and when standing strengthening those muscles with exercises more obscure options such as Octreotide (stops blood rushing to gut after meals; rarely prescribed because of risk of gall bladder damage) smaller meals lowering carbohydrate intake 4. Assorted other things stimulants Mestinon see video lecture Pharmacological Treatment of POTS (ignoring those treatments related to tachycardia) see list POTS What Helps? (ignoring those treatments related to tachycardia) immune treatments Dr Peter Novak seems to be the leading person who publishes on "plain OI" (not POTS, not OH, etc.) at the moment. He has identified some new types/features of OI, called OCHOS and HYCH. (I am sure other specialists know about it and treat it as well.) He has a textbook of case studies that includes various kinds of OI. He mentions that for "plain OI" he sometimes has success with calcium channel blockers or ACE inhibitors, which are both blood pressure reduction medications. Reason that these help some people is unknown. If you would like to read his research, let me know and I will link to it. He did do a lecture on OI syndromes for Dysautonomia Intl but unfortunately the audio isn't very good. https://vimeo.com/479624617 Having said all that, trying medications can be disruptive and tiring. I seem to be sensitive to things too, and trying so many has taken me a long time and been very disruptive. The only things that have worked for me so far are prednisolone (coincidentally given as a short course for allergies; docs do not want me to take it longer term) and albumin infusions (only help me a bit and inconvenient to access). I've still got a few more to try. I can completely understand someone saying that trying medications is going to be too disruptive for me and I don't want to risk bad reactions and possibly setting my health back or going into a flare. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 5, 2023 Report Share Posted January 5, 2023 @Sarah Tee I was just going to respond to @Wanderlands questions but saw that you already hit on all of the important stuff in your reply. Thank you for this great advice! Quote Link to comment Share on other sites More sharing options...
Garden Gal Posted January 23, 2023 Report Share Posted January 23, 2023 Maybe it depends on how functional you are? I was pretty not functional. For me, having a few meds has been life changing. It took some uncomfortable trial and error, but I've been on the same meds for years now and pretty stable all things considered. You may ask about an additional option for when you are doing particularly poorly rather than something you have to use all the time...For example: It might be debatable, but my cardiologist and endocrinologist have said using midodrine on an as needed basis is OK. For me, that's great. Then I don't have to deal with the side effects (that are not nice) when I don't need em or don't have a lot planned, but I have a tool for when I go grocery shopping, or want to do something active with my kids, need to go to work, etc. Quote Link to comment Share on other sites More sharing options...
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