castronovo112587 Posted December 31, 2013 Report Share Posted December 31, 2013 Thanks you as well unfortunately I think I'm going to need antibiotics and last time I took them my bp went to 80/56 and heart rate was really irregular I seem to be allergic or have a reaction to EVERY medicine Quote Link to comment Share on other sites More sharing options...
Hope Posted January 1, 2014 Report Share Posted January 1, 2014 I've only had to take meds hit or miss lately. I think the midodrine and beta blocker were contributing to my fatigue. I'm in the north so the cold weather, low allergy levels at this time of year, and putting on compression stockings before my feet hit the floor have all greatly improved my symptoms. I have a plan for the spring with Claritin, compression hose and a cooling vest. I don't think I will feel as good as I do now, but I hope to be better than this past spring/summer with these changes. And I extremely limit my eggs and peanut butter as I figured out these were triggers to my BP drop also. Quote Link to comment Share on other sites More sharing options...
Angel1234 Posted January 1, 2014 Report Share Posted January 1, 2014 I tried florinef for about 2 months and it did help alot. My BP actually would be over 110. But I gained weight and decided I didn't want to band aid problem anymore. Symptoms got better with exercise and starting GF diet (found out I have celiac). Relapsed so decided to try midodrine. Didn't like the way it made me feel so stopped after 2 days. That was over thanksgiving. Been on no meds and have good and bad days on weekly basis. Still have heart palps and low BP but quality of life not hindered. So far- I am happy with my choice. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 1, 2014 Author Report Share Posted January 1, 2014 Thank you for your thorough comments guys! On days like this it helps keep me grounded. Can't thank you guys enough. Here's to a happy HEALTHY 2014 Quote Link to comment Share on other sites More sharing options...
Freaked Posted January 1, 2014 Report Share Posted January 1, 2014 I'm not on anything atm, just supplementing with small amounts of pure salt. I can't say I'm good, but a lot of that is probably because I have no exercise program. Any of the meds I've tried so far have just made me better in some ways but a lot worse in others. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 1, 2014 Author Report Share Posted January 1, 2014 Last week and this week I didn't exercise 3 times like normal and my sleep schedule is off with winter break with the kids. Curious if that will make a difference. Next week back on schedule. How do you supplement with salt? Food? Fluids? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 3, 2014 Report Share Posted January 3, 2014 No way! If you don't have to feel bad why would you? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 3, 2014 Report Share Posted January 3, 2014 For years all meds seemed to give me odd reactions. Then I started florinef and now I can tolerate meds fine nd all the weird intolerances to meds, caffeine, etc all disappeared.then I found out that low circulating blood volume compromises the efficacy of many meds - particularly vasoconstrictors. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 3, 2014 Author Report Share Posted January 3, 2014 I have florinef here. Scared to start it after the beta blocker incident. I hear the side effects are headache, swelling and cycle irregularities. I'm thinking that ocp might help blood volume and cycle irregularities. In the past month my symptoms have been the moat frustrating for that 7-10 days. Just wish I had a doc that could lead by experience. I'm their first patient and don't have a subtype. Nice to hear from you Rama Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 3, 2014 Author Report Share Posted January 3, 2014 I guess the trial and error part gets me without my subtype. Can't afford to make it to mayo or the pots treatment center Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 3, 2014 Author Report Share Posted January 3, 2014 Ah 2014. Have to start all over on my deductible. Quote Link to comment Share on other sites More sharing options...
Hope Posted January 28, 2014 Report Share Posted January 28, 2014 Weaning off, but keeping my supply close by! Quote Link to comment Share on other sites More sharing options...
Enid Posted January 28, 2014 Report Share Posted January 28, 2014 Nope - meds are a part of my reality that help me function and enjoy a much better quality of life. I am on iron, b2 and vitamin D and a small dose (10 mg a day) of nadalol. I had a priblem getting nadalol recently (no longer distributed as a 40 mg pill in my province) so I had to switch to proanolol 10 mg in am and 10 mg at dinner.I had been feeling pretty good and functioning well (working full time, not much palpitations or head aches, fatigue under control) so had this thought that "maybe I don't need the nadalol anymore" anyways, during my brief time on propanalol, starting to notice old symptoms creeping back. Fatigue, that feeling of shaking inside, nighttime tachycardia, tachy after lunch, headcahes, visual vertigo .luckily I was able to score some 40 mg nadalol from neighbouring province (1hour drive), I am feeling back on track and this episode made me view my meds in a positive manner - in that they allow me to function and enjoy life much more with less symptoms.my 2 cents -or 10 mg Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 28, 2014 Author Report Share Posted January 28, 2014 Thanks for your posts! It means a lot to hear about symptoms off and on meds. I'm up to 2 days a week at work. I can relate to the symptoms at work. Off and on worsening and clearing of symptoms. I'm not on meds currently but wonder if I'm doing something right when I have those good hours or is it just the straightaway on the pots Rollercoaster Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 10, 2014 Author Report Share Posted February 10, 2014 Thinking of meds for hormones. By being off meds and just doing lifestyle changes... I've found that I have the most flares and flurries as I call them are around time of my cycle.I have an iud currently which releases Progreterone. Quote Link to comment Share on other sites More sharing options...
cleo Posted February 10, 2014 Report Share Posted February 10, 2014 I'm not on any pots meds. I used to take florinef but had to discontinue it when it interacted with the prednisone Im on for another medical condition. I'm really sensitive to many meds so less is better for me. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 10, 2014 Author Report Share Posted February 10, 2014 Cleo... Do you mind me asking how your quality of life is? Do you have symptoms, better or worse with lifestyle changes Quote Link to comment Share on other sites More sharing options...
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