Eli6596 Posted September 10, 2005 Report Share Posted September 10, 2005 Persephone,I am so sorry that it feels that no-one is caring. Please know that I and others here care about you. It helps me to try to understand why people don't care. I think it is because so many people are just too self absorbed. Also, some people with good health have difficulty understanding what it means to struggle day to day with a chronic illness. If they don't understand, sometimes it is difficult for them to care. Some people just never learned CAPACITY to care. I don't really mean to sound cynical. I feel sorry for them. That is what helps me to deal with them. Also, there are a lot of people who can and do care. I hope you run into THOSE people and keep them around you if possible.I have to take midodrine 5mg two tablets four times per day. I don't know what your other medicine is. Is it a beta blocker? Maybe your medicines are not working because the doses are not high enough for you? I would ask your doctor. Karyn Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted September 10, 2005 Report Share Posted September 10, 2005 Right now I have not been able to find a Medication to help. What I do that helps is the following:A low dose xanax is the best weapon I have right now,...I can go from 50% functional to 80-90% with this.Compression HoseSodium especially celtic/himalayan sea salt and/or salt tabsElectromix added to all my waterand fluid intake of at least 3 liters a day... I have found before getting up in the morning taking the salt with at least 16 oz of elecrtolite water increases my volume.I also recently started with a homeopathis cell salt that I think is helping called Nat sul 6xand of course my antibiotics for Lyme.Things I have tried that have not worked include:FlorinefClonodineThere are several other things I want to try and will be in the next few months they include:Hexagonal WaterOndamed treatmentsand MestinonIts such a guessing game for all of us Quote Link to comment Share on other sites More sharing options...
DavidH Posted September 12, 2005 Report Share Posted September 12, 2005 Without a doubt Atenolol has made my life liveable. I drink lots of water(just cannot drink gaterade I hate the stuff) I try to get plenty of rest and not just sleep but rest during the day when poss. I have gone back to work full time but have to be very careful about overdoing it. I started with 125mg a day but am now down to 25mg a day. If I miss a dose of atenolol I have the same old sym within a very few hours. I still have breakthrough sym almost everyday but nothing like it was.By the way I am 54 and was dia by tilt table only about a year ago, but have had slight sym(compared to how bad they did get) for many years. Quote Link to comment Share on other sites More sharing options...
HoldOnToHope Posted December 6, 2005 Report Share Posted December 6, 2005 Thought I'd get this back in circulation. It's interesting. Quote Link to comment Share on other sites More sharing options...
Mrs. Glass Posted December 6, 2005 Report Share Posted December 6, 2005 Havent found anything yet! Be glad when they do! Mrs GlassI'm not looking for indepth discussion, just a possible list of treatments that could alleviate my tachy and brady episodes and erratic bp....anyone out there found a treatment that has really helped their POTS to the point where they can go back to living like they did before their POTS got real bad?Thanks in advance guys, you're all awesome P x x Quote Link to comment Share on other sites More sharing options...
Gena Posted December 6, 2005 Report Share Posted December 6, 2005 one half of .25 mg of Klonopin before bedsmall dose of Xanax once in a while during day if having a lot of anxiety/adrenaline feelingsCeltic sea salt with water first thing in the a.m. and another glass of H2O in the afternoon with saltDrinking plenty of water throughout the day and some with GatoradeAvoiding sugars and refined carbs, caffeine and alcoholExercise 3-4 times per week (combo of pilates, yoga, weights and aerobics)Meditation, prayer and visualization techniquesHaving an excellent cardiologist that understands what I'm going through (Dr. Kusumoto at Mayo in Jax)Tried Midodrine and Toprol XL, but they did not work for me. Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted December 6, 2005 Report Share Posted December 6, 2005 Aha- that sounds like lucozade. Thanks Karyn! I realised what you say about taking things for granted just reading the replies on this thread--I am being offered no treatment exept 1.25mg bi daily and midodrine as and when I need it. Neither of these options work for me But nobody cares...and I'm meant to start at Oxford University four weeks today... Actually it's more like Powerade, because all the Lucozade I've seen is caffeinated. I like Powerade when I'm desperate, but it's like ?0.80 for a bottle, so not worth it. I'd just as soon drink some apple juice with salt added.For me, beta blockers work pretty well. Not the greatest, and they leave me with a very blah feeling. I don't remember the last time I actually had any energy (and the CFIDS/ME doesn't help, either).Hopefully that and the midodrine will get me through next spring... if I can't get midodrine in Italy either, then I will be put on DDAVP which had pretty awesome test results back in August for general symptoms, but I might need the BB as well.... a next course of action is procrit. No matter how much salt I've been eating, water and everything else go right through me. I've still got the dark sunken eyes of a sick person, which I heard was related to dehydration. Protonix was wonderful, and right now, milk of magnesia/zantac isn't working at all. Last night I woke up with acid burning a hole in my chest and tried to fall asleep in my desk chair. For my GI problems, papaya enzymes sometimes help, but that's about it.I guess it's about finding your own favorite cocktail! Quote Link to comment Share on other sites More sharing options...
shannon Posted December 6, 2005 Report Share Posted December 6, 2005 Mestinon (180mg time release, each morning) has helped me the most (so far). I still have some symptoms (especially fatigue), but my HR does not go crazy like it used to and I am usually able to keep up with my daily life. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted December 7, 2005 Report Share Posted December 7, 2005 Nada, I have been unable to tolerate any meds, can't have salt because of menieres, when I start on my recumbent bike, it dumps my K+ and I have paralysis. Therapy helps me deal with this, but there is nothing that has worked for me, ever...only made me worse. morgan Quote Link to comment Share on other sites More sharing options...
mom4cem Posted December 7, 2005 Report Share Posted December 7, 2005 Still searching for the right combo that works but so far,Works-12.5 atenelol 2x a day-(add another dose if tachy is very bad) any more then feel blahl-theanine 100mg 2x a dayklonopin as neededfluidsDoes not work-toprolpaxilzoloftlexapro - had increase in anxiety etc., may try ssri again.. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 8, 2005 Report Share Posted December 8, 2005 SSRIs actually depress norepinephrine uptake so the fact taht they improve some patients with pots seems weird - i guess they improve the general operation of the autonomic nervous system through an increase in serotonin?Anyway - beta blockers work for me for the adrenalin rushsLicorice extract is great but too much can cause a migraineand lastly DHE is similar to midodrine but has less sideeffects (its a peripheral vasoconstrictor).Things that dont work for me - hands down florinefBy the way - what is GERD? Quote Link to comment Share on other sites More sharing options...
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