dizzyallie Posted January 21, 2015 Report Share Posted January 21, 2015 Hi guys,I am at a loss. I don't know what exactly med wise should be benfitting me at this moment.I take endep at a low dose, beta blocker, sandomigran, vitamin b, vitamin d and megafolinic acid.I am thinking about trialling fludrocortisone again - although I think it made me worse last time?I am at a loss. Period. I don't know what to take to help this sick body at all anymore?I am seeing a rheumatoloogist next month to rule out lupus but meantime I find I am getting sicker and sicker.Any advice would be greatly appreciated.Allie. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 21, 2015 Report Share Posted January 21, 2015 With all of the symptoms that give us grief, I like to focus on the most concerning. One thing at a time. What troubles you the most? Quote Link to comment Share on other sites More sharing options...
artluvr09 Posted January 21, 2015 Report Share Posted January 21, 2015 I take atenolol. I take half of a 25 milligram pill with breakfast and the other half with supper. It has helped me some. It decreased my racing heart and I don't get as much palpitations and it helps my anxiety. Hope you find something that helps! Also Gatorade helps with the electrolytes and salt! Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 21, 2015 Report Share Posted January 21, 2015 http://forums.dinet.org/index.php?/topic/19324-the-complete-guide-to-pots-therapies/Hi dizzyallie,I included the link above as it is fairly comprehensive in the way of treatment options. You may be taken aback when you see the list as it is substantial. The hard part of treating autonomic dysfunction is that each person presents a bit differently and each person has their own underlying cause (and other substantial list). The underlying cause often is hard to determine but is the defining piece of information in figuring out which treatment will help. For example, the only thing that truly makes me feel better is prednisone...it even clears up my GI issues but we don't have a definitive reason why this helps me. We know I have allergy, mcas, and inflammatory issues but we can't put our finger on a clear diagnosis. Hopefully the list in the link will give you a jumping off point and some things to research. Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted January 22, 2015 Author Report Share Posted January 22, 2015 Thankyou for your replies much appreciated. Is atenolol a beta blocker? Im not real with it today, head fuzzy and dizzy surprise surprise.and thanks for the link Katybug will look over it when I can. Interesting about the prednisone, i think I took it yrs ago and felt it helped somewhat too. Might be in the pipeline. I get no definitive diagnosis either - bit like you, mcas too - just want someone to help treat it all. so frustrated. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 22, 2015 Report Share Posted January 22, 2015 Yes, atenolol is a beta blocker. Keep your chin up. There is,unfortunately, nothing quick about five ding effective pots treatment but it will come in time. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 22, 2015 Report Share Posted January 22, 2015 Spoken to your docs about alpha 1 agonists like phenylephrene - Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted January 23, 2015 Author Report Share Posted January 23, 2015 Thought it was a beta blocker, ta. Never heard of alpha 1 ..... I get overwhelmed by all the things to watch for and unfortunately docs don't mention them either. Quote Link to comment Share on other sites More sharing options...
badhbt Posted January 23, 2015 Report Share Posted January 23, 2015 I recently broke out my old POTS medications because of a new flare. I had tried Midodrine in the past but it didn't work. I tried this time and it is really helping. I think my symptoms are from low bp....I get the dizzy out of it feeling with crazy vision. It seems to help and I can tell when it wears off in about 4 hours. Just a thought. Quote Link to comment Share on other sites More sharing options...
imapumpkin Posted January 24, 2015 Report Share Posted January 24, 2015 my neurologist said she has some POTS patients who drink 2 tabs of NUUN a day and don't need medication. I drink one 16-oz water bottle witha NUUN tab in it and feel a great deal better for the hydration. just a thought! Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted January 24, 2015 Author Report Share Posted January 24, 2015 What is midodrine again? So overwhelmed by drug names lately. And what are nuun tabs? Never heard of em. I feel like I have to come up with all the info to present to docs, coz they dunno what to offer. Quote Link to comment Share on other sites More sharing options...
imapumpkin Posted January 24, 2015 Report Share Posted January 24, 2015 Nuun tablets are like airborne...you put them in water and they dissolve into a drink that has all the electrolyte and hydration benefits of gatorade but none of the sugar that might upset your stomach and rot your teeth. Places like Sam's, EMS and other sports stores carry it, some drugstores have it and you can get it here: http://shop.nuun.com/nuun-active-hydration.Midodrine is supposed to help retain blood volume to boost BP.something else i've found helps my energy is b12 shots. my integrative medicine doctor prescribes them. they are expensive and not covered by insurance, but i feel so much better when i take one. Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted January 26, 2015 Author Report Share Posted January 26, 2015 hmmm midodrine, I will ask about that this wk. Nuun, I shall look into that too. Might be very similar to one powder I tried here in Australia. I gotta be careful as I have no large bowel is all. Thanks. Quote Link to comment Share on other sites More sharing options...
sideofsalt Posted January 26, 2015 Report Share Posted January 26, 2015 My doctor recently reviewed my medication regimen and said that the general classes of medications to deal with my POTS was:MidodrineFludrocortisoneSSRIs (I've read SNRIs may be even better for certain types of POTS)Beta BlockersI stick with midodrine because it works for my primary problem right now - hypotension. I think gjensen had a good point about focusing on your main concern and starting with that. I hope you find relief soon. Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted January 27, 2015 Author Report Share Posted January 27, 2015 Thanks sideofsalt - great name btw. My main problem is dizziness but don't have norm dizziness also a vestibular vertigo component. Hmmm so hard. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 27, 2015 Report Share Posted January 27, 2015 There can be physical therapy to retrain your body if you have vestibular vertigo. (Been to the PT for that myself.) It is a slow process but they can teach you e,ercises to do at home as well. It helps retrain your vestibular system/brain to reorient itself in relation to its surroundings and movement. Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted January 28, 2015 Author Report Share Posted January 28, 2015 Ta Katy, yeah I tried that, been ongoing 4 yrs now, really getting me down. Exercises didn't help me. Quote Link to comment Share on other sites More sharing options...
jonathan77 Posted February 1, 2015 Report Share Posted February 1, 2015 I take Nadolol(beta-blocker) florinef, and sodium tablets. The nadolol has done wonders for the rapid heart rate. but the florinef hasn't seem to do anything for the bp drops. I actually have had the most benefit from compression hoses, extremely tight ones. Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted February 2, 2015 Author Report Share Posted February 2, 2015 Think I ll give those stockings a try in winter. Found I was worse on florinef too. Quote Link to comment Share on other sites More sharing options...
Jon6945 Posted February 3, 2015 Report Share Posted February 3, 2015 I would try either an Antifungal, like Diflucan or Prednisone for a week or two to see if either of these help. Antifungal to address the very undiagnosed fungal infection that can trigger all sorts of unpleasant vestibular symptoms. Prednisone for the possibility of it being relate to a post infectious (post viral) syndrome that triggered an autoimmune, like a Meiners. All the other treatments are just symptom management and they won't help address the underlying cause of your problem, just mask it or make it worse. Go straight for the cause (infections, autoimmune), the other stuff is all qwackery if you ask me and leads to more problems, more side effects, more damage. Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted February 3, 2015 Author Report Share Posted February 3, 2015 Thanks jonYeah couple yrs back I tried prednisone for dizziness, helped a lil. Seeing rheum at end of month so I ll re address it. Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted February 3, 2015 Author Report Share Posted February 3, 2015 I didn't know anti fungal could bring up vestib issues interesting. Quote Link to comment Share on other sites More sharing options...
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