Kaitlyn

Katybug - that's great you were able to increase to a full tablet again. Another trick I found helped me when I got up to the higher doses and was having stomach problems was to take a half tab every few hours throughout the day. As far as the UTI issue that is interesting. I remember back in January I was having some symptoms feeling more like urinary retention but with the brain fog I can't remember what else was going on at the time lol - sorry. I know I was in a flare and can't remember what med changes might have been happening. Mestinon typically helps promote the muscles that control bladder, bowel and all muscles in general so yes you wouldn't think it would cause anything but frequent urination. Good luck!

Katybug - I wouldn't underestimate the power of Mestinon to wreak some havoc with your stomach I am currently on 90 mg - was on 120 mg. Definitely not saying it isn't or can't be a beneficial med - it is. Just want you to be ready for the stomach issues. When I was first titrating up I had to go back down for a bit and then go up again. That seemed to help give my body more time to adjust and then it was easier to take. At the 90 mg I have much less issue than I had at 120 mg. I am sure everyone is different and hopefully your current stomach issues are unrelated as antibiotics can cause the crud also lol. Mestinon has seemed to help some with BP and also muscle recovery. I am about to find out just how much because I think the plan is to see where I am at baseline again and wean down the Midodrine and the Mestinon. Always so much fun and games Good luck!! Let us know how it's going =)

PS - see more details about how to fill etc on salt capsules at "Why are salt tabs so expensive" posted by Nymph

Hi DizzyGirls - sorry to hear about the struggles with your daughter. It must be so painful to watch your daughter struggle I have a daughter (almost 32 now but I get it the mother's pain!) and also the sarcasm I just put salt in them. My pharmacist had said if I bought the size 0 I could fit a gram of salt in there so I bought size 1 which is a bit larger (but not hard to swallow - they are gel caps - I hate taking big horse pills!) so I know I am getting more than a gram in each. It really is helping. It is hard to get enough salt with food, even for someone who loves salt like I do and even drinking tomato juice etc. Yes the store bought thermotabs ... I took them once and I have enough stomach problems there was no way in Hxxx I was taking them again!! Before I started the homemade salt capsules my BP was really tanked (I had had a cold and 30 mg a day wasn't touching it!). I was having post prandial hypotension and supine hypotension (go figure!) to the point that I could not wake myself up. 60's/30's when I could get a reading. The combination of getting over the cold, the flare settling down and the salt capsules has really helped! Let me know if there is anything else I can answer for you =) Good luck and best wishes ... hugs! Dancer65 - nice to hear you are doing better and managing better on the Midodrine! What's nice about that med is you can take it when you need it but it isn't typically hard to get off of either. Not like the Florinef.

Sorry for the delay - had a flare. Thanks for the warm welcome ? Looking forward to getting to know all of you! kaitlyn

PS - nymph I should try your licorice tea. I drink a lot of organic teas did you decide on Mestinon?

Coming to the conversation late! Dizzygirls how is your daughter doing on the Midodrine and off the the Florinef? I've been on Midodrine for over a year and it helps some but the shower is one of the most dangerous places for sure. What my neuro has me doing is I have water and meds on my bedside table and take them before I get up. I am supposed to wait at least an hour before I attempt a shower. No more of my jump and run to the shower I've been doing all my life. I tried Florinef and had a bad allergic reaction - ugh. Katie - have you tried Mestinon yet? I have been on that almost a year as well. Be prepared for some possible stomach upset, some of which gets better in time at least for me as my body adjusted. I was up to 120 mg but am down to 90 now. I am going to try weaning off Midodrine per my EP/Cardio (he wasn't happy the Florinef didn't work and is not a fan of Midodrine) and see how that goes. I am taking tons of homemade salt capsules (well 3-4 a day lol - I guess not tons) I am not sure if they might try desmoppresson or something next in place of the Midodrine. good luck all both with the med dance and staying on your feet ??? kaitlyn

Hi what I do is buy empty capsules from Amazon by herb affair and fill them myself - cost is around 18 for maybe 1000 capsules. I buy size 1 which holds more than a gram of salt. When I fill them I do a bunch at a time so I don't have to mess with it every day. I also alternate between iodized salt and my preferred sea salts on the advice of my EP/Cardio because he said the sea salt is higher in potassium and we need to watch the potassium levels. it is really easy to fill them. Just dump the salt in small bowl. Pull the capsule apart and dunk the larger half in to fill it. Then snap the smaller half in place over the larger half and voila homemade salt capsules ? Another great benefit besides being ALOT cheaper is they don't upset my stomach at all!! kaitlyn

Hi Brethor9 - sorry to hear you're feeling so much worse. Did anything in particular happen right before the flare? Travel? Motion? Flu? Just wondering about a trigger. I know a simple cold can knock me back and tank my blood pressure, literally for months. Another thought ... And it's just a thought but I'm wondering if you've had any headaches? Migraine disorders often go hand in hand with Dysautonomia. As far as Florinef I tried it but had an allergic response: headaches, insomnia, nausea, increased tremor and so cranky I couldn't stand myself. And that was after 4 days of 1/2 tab. i hope you get some answers soon and feel better! kaitlyn

I tried salt tabs and they gave me an upset stomach (no headache, but I only took them once). What I do now is buy empty capsules (made by Herb Affair on Amazon) and fill them myself. You can buy different sizes. I bought size 1 which easily holds a gram of salt. I fill a bunch at a time (half with sea salt and half with iodized salt - on the recommendation of my EP). I am currently taking 3 of those per day in addition to tons and tons of salt on my food. The thing is it makes me really thirsty which forces the water, which is good! I am supposed to be getting, if I remember right (which I should ... brain fog!) at least 8 grams of salt per day. Oh and the capsules aren't very expensive. I think they were about $12 or $14 for a large bag that will last a long time. Good luck =)

Imagine everyone is different. For me my temp runs a little low and when I get sick it goes down instead of up. On occasion 95.5 ish. I was told if it goes below 95 to let my Dr. know - otherwise not to worry too much. Hope the flu shot keeps ya safe! =) The last thing you need is a round of that!!

Hi Spring I am a Newbie to the site but have been diagnosed with ... Well you can read the list below lol i didn't have time to read every post so I apologize if I am repeating something already said. My EP/Cardiologist put me on a beta blocker that blunts the tachycardia from POTS and for the IST (inappropriate sinus tachycardia). But there are still lots of times that I have the same symptoms I had before being on the beta blocker even though my HR might only be in the 70s or 80s instead of 150s. I still feel shaky, palpitations, short of breath etc. I have read particularly about IST - that you can experience the symptoms even when being treated. Not sure if this is helpful or not. Good luck - hope you get things figured out quickly ? Kaitlyn

Great! Let me know how it works out for you ?

Hi Latte girl I have POTS w severe vasodepression, neuro cardiogenic syncope, low blood pressure (OH-Orthostatic Hypotension) - all stuff that makes you dizzy and presyncopal or syncopal. what I did is created a BP log on the computer with the date, time, BP, HR and a line to indicate seated, standing, lying down or any other notes for example 'started xyz new med'. Then I started checking randomly and also when I felt symptomatic. When I see my dr I bring this log with me and it can provide good information for them. It's important to have an accurate monitor and do the readings correctly. You may even want to bring your BP cuff to the dr with you to check it against theirs. Also, don't check your BP lying on your side - it will give a lower reading. If you are in bed you have to be laying flat on your back. Good luck ! ?

Good for you, Yogini! I'm so happy for you and that the course of the illness went the way it did for you! I know it's a lot of trial and error with the meds. I will do some research on Paxil. If memory serves it is an SSRI. Appreciate all the input - thanks ?

Dadofpotsson - thanks for the info. It is validating to know I am not the only one. Drs are going to check sodium, potassium, and cortisol and then I guess I will give the Florinef a try. Half tab to start with and we will see how it goes. Happy to hear it has helped your son! Yogini - it has been as low as 60s/30s which does not make for good MAPs (mean arterial pressure - the measurement which lets them know if your getting enough blood to organs). I am coming out of an exacerbation and that combined with added salt capsules and the abdominal binder has brought it up to 80/40s. Much better but they want it higher. My neuro said she would like my systolic supine to be 120 ... I don't see that happening lol. I have always ran low anyway. Have always been athletic and ran 90/60. Wasn't a problem until a few years ago. Did the Paxil manage the tachycardia? Thanks again for both of your responses! It's so nice to finally connect on dinet ?

Hi I am new to the forum so am posting to say hello and I look forward to getting to know you and to sharing mutual experiences and support. I also have a question. Of course with POTS and OH we are all familiar with tach-y and the symptoms that go with it as well as BP drops when standing too long ... My question is does anyone else have postural hypotension when sitting and laying down? This has been going on for months and has been resistant to beta blocker change, added salt tablets (homemade 1 gram capsules 3x/day), and an abdominal binder. The binder has given my BP a small bump when lying flat but it's still not where they want it to be. I have a great team of Drs that I have confidence in (took a long while to get here but I am so grateful!). The next thing they want to add is Florinef which I am feeling very resistant to. I know it is a natural type of steroid ... but I find myself procrastinating starting it ... I don't know what it is. I have followed all advice and cooperated fully with everything else but for some reason I feel myself digging in my heals on this one. I just don't want to take it. I am so tired of all the meds and the side effects and it appears Florinef can have some bad ones. And yet, having BP so low that my organs are potentially not getting enough blood is not an option either. I appreciate any feedback ? Kaitlyn