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Everything posted by RichGotsPots

  1. I don't lower BP just high tachy and very bad breathing issues. Overheated, cold extremities, bad fatigue, leg, feet and back pain
  2. what are the main symptoms for this, any breathing issues?
  3. Thanks for responding everyone. Of course everyone will have different reactions especially us POTS people as we are hypersensitive to meds. One symptom I don't have is low blood pressure but I thought I would warn some people who do. My other concern is we all seem to have dehydration issues and body heat issues (extremities are cold and other parts are very warm) these meds further mess with that symptom. For Mast cell people of course they have no choice but for everyone else, I wish there are new meds. If anyone knows knew meds without these affects, please post.. Thanks!
  4. Hey Chaos, thanks for reporting in, looks like you are in the same boat. What have you tried that has helped and what hasn't helped? What meds if any that work for it? Do you get overheated, dehydrated, fatigued, etc..?
  5. Ramakentesh, what makes you think this, it has been observed, but was it observed in you? Can you give us more background?
  6. Hi Lotusflower, me and you have to stay in contact! Sounds like we have exactly the same symptoms. I'll add you as a friend! I get the same type of SOB problems, I have a theory that our POTS dehydrates our lung. Most POTS ppl also have colder extremities but really a really warm body. I think our lungs are loosing hydration somehow. I also get with when eating and allergies but I think that is slightly different. So maybe we have two types of asthma or more and Mast cell to boot. I take Nexium, sometimes Zantac at night before diner. I don't like claritin, it drys me out so I'm testing half doses of Zyrtec. Someone emailed me about everything the liver does to help us and one thing it does is act as a filter for airborne toxins. I think I got my POTS and Asthma from inhaling toxic paint chemicals so maybe my liver got damaged. I looked up acetylcholine and it looks rare. 1st I'm ruling out some basic lung disease and fibrosis, neuro-musculor issuses and adrenal/hormonal/diabetes type of things, then I'll go after the rare things if it comes to that. But one things for sure that if one of figures this out then the other one will benefit I don't think we have EDS either, I'm not flexible.. I want to maybe see Dr. Grubb down the line, maybe he can have an answer..
  7. Hey Alyssa, sounds like we have the same symptoms, I'd be curious to know all the times the your breathing is at it's worst. Like fatigue, night, being hot, aft eating, etc.... Have you tried plain ol prednisone pills? My doc just ordered me a long acting beta antagonist, never tried them. The problem with Albuterol (ventolin) and the long acting beta ant (Dulera, is a combo long-acting and inhaled steriod) is that they can mask regular breathing problems, so you should not be using them constantly. There are warnings for both Ventolin and Durela that say there is a high mortality (death rate) with people who use them continually. So I only use my Xopanex (a ventolin, with less tachy affects) unless I'm thinking about the ER. You should try a separate inhaled steroid and try upping the dose, there are very little side effects because they stay in the lungs and most steriods have bad side effects in the blood. For example high dose prednisone cause bone lose, water retention, glaucoma, weight gains, etc... but inhaled doesn't. Plus you should really see which is helping more the inhaled steriod or the long-acting beta. The long acting beta is really the same as the Ventolin (which is a short-acting beta). hope that helps and let me know what happens! best, Rich
  8. Wow, everyone, this is exactly what I was looking for. We all are adding great insights. The more we share the more we can educate each other and conquer this! I went to a new Pulmonologist today, he's smart (I always look up a docs background before I go, their med school, internship and fellowship and if they are on CC Top Doc list), but his specialty is sleep apnea (he was the only local doc I could get on such short notice) ( I was running out of prednisone). He told he doesn't think I have asthma, but ordered a pulmonary function study (third one ever). He says because I don't wheeze and don't really cough during my attacks it's probably not asthma, or that I may have minor asthma on top of whatever else I have. I threw at him a whole list of things I want to get tested for. Even though his office has an allergist, they don't do Mast Cell testing (so I guess that will have to wait until I see an immunologist). He gave me a script to get a High Resolution CT with contrast, he said that will cover almost everything. The contrast will check for clots, which he said are unlikely because in the hospital my Echo cardio was okay and my D-Dimer was okay. I'm not thrilled about the contrast injection that can make breathing worse... But the High resolution is good to test for Lung Fibrosis, a Lung mass, COPD, and most other Lung issues. He wouldn't give me a PET scan, which tests for small types of lung cancers... He said he feels that because of my fatigue, maybe my breathing is Neuro-Muscular disease, has anyone heard of that? But he also said to see a good Endocronologist to rule out everything adrenal, thyroid (which the basic test in the hospital came back okay). He said he might run me a on treadmill to see how my breathing acts up down the line. I made him give me tons of new meds. He wouldn't give me Zyflow because he thinks its the same as Singulair (it's not exactly). He gave me tons of Predinose because I told him if it's any number of other things than asthma, they would prescribe me prednisone anyway. I asked him to try a new inhaled steriod so he gave me Pulmicort Flexhaler. Anyone ever use this and Asmanex, if so how do they compare? I asked him for an anti-anxiety med so he gave me Zoloft (but don't really want to use it, they all have bad side-effects that I think make our POTS worse) Any one ever use this and has it helped breathing? I also got him to give me a long acting beta antagonist, forget the name because the pharma had to order it for Friday. Any use one of those? He wanted to give me a combo but i told him i wanted to test them separately. Not sure how much of the Pulmicort i should use. I was using 6 inhales of the Asmanex 220mcg and Pulmicort is 180mcg, both powders. Any ideas? I also bought Zyrtec, tried half a pill to test it out, so far it's okay, can't tell.. Once we get some more posts I'll start making updates and organizing like symptoms with like medications and % of success if you list them. Cheers!
  9. Hi Flop, I saw that you have Asthma and POTS like me. I was just diagnosed with POTS, but both POTS and Asthma set in at the same time 5 years ago. Do you live in the USA because I'd like to try Ivabradine? Since I have bad breathing I'm worried to take a betablocker.. How does it affect your asthma? Would be great to talk.. Thanks, Rich
  10. Has anyone tried Procoralan (Ivabradine)? If so how did it work on your tachycardia? Any side effects? Is it coming to America anytime soon? I have breathing issues so the Betablocker are a big no no. Thanks!
  11. Does anyone have aches in their feet after standing awhile? Mine feet like they pulse if I stand for more than 5 minutes. Also the inside of thigh (especially closer to my knee) can feel like they ache from nerves or something. I'm worried it's some kind of Deep vein thrombosis (DVT) or something? Is this because of pooling? How do I get tested for leg blood pooling? Has anyone had these type of aches or pulses? They really make me fatigued which intern bothers my breathing.. Thanks! Rich
  12. Hi Mack's Mom, Thanks for your post! Does Atrovent work well for you, it's usually used for COPD but I asked my dr in the hospital for it, haven't used it yet, but got the nebulizer form? I tried Clariton but it completely drys me out is Zyrtec or Allegra better? I get very over heated and dehydrated easily, but know I have allergies. I bought a mattress zipper cover, whirlpool air purifier, silk pillows and some dustmite stuff. They help a little, not that much. I don't like drowsiness like from nyquil or Benadryl do the stronger H-1's make you drowsy? I wonder if the anti-histimine they use for nausea and dizziness Meclozine, would help... Have you tried the Mast Cell Stabilizers, what are the side effects if so? Thanks!! Rich
  13. Hi Godsgal, Thanks for your post! What test did they run to figure out that you had Mast Cell issues, I'm seeing a allergy/pulmonary office on Wednesday? How did all those other places esp Mayo miss it, so I know what to ask for? Any of those Mast Doctors in the Philly,NJ or NYC area? Even though Mast cells control histimines I'm beginning to think anti-histimine meds are not great for our POTS, because they affect our heat, dehydration, raise our tachycardia and can cause orthostatic hypotension (one symptom I dont have). Have you tried Cromolyn? Do you know of any allergy meds that don't have these side effects? Claritan for example completely dries me out.. Have you ever tried to up Singular to 20mg+/day? Have you ever had to use an Epi-pen, I'm worried because our tachycardia is so high it would go over 200 from that stuff?
  14. A lot of us are taking allergy medicines especially those of us who have Mast Cell issues or Asthma. We should be careful because these medicines affect our Parasympathetic system with can raise body heat, cause dehydration ( if you've ever used clariton or other brands of allergy meds and they have dried up your nose or mouth), they can cause tachycarida, lung/bronchispasms and they can cause ORTHOSTATIC HYPOTENSION. Look at this wikipedia page http://en.wikipedia.org/wiki/Anticholinergic Look through the side effects and you will see the Orthostatic Hypotension as the last possible side effect. let me know if you've experienced any of this or if you've found them useful. Thanks, Rich
  15. I read these affect the way your body reacts to heat: Allergy medicines (antihistamines) Some blood pressure and heart medicines (beta-blockers and vasoconstrictors) Diet pills and illegal drugs such as cocaine (amphetamines) Laxatives Some medicines that treat mental health conditions (antidepressants and antipsychotics) Seizure medicines (anticonvulsants) Water pills (diuretics)
  16. Hello everyone! This is my 1st post and I hope it will bring me a lot of insight into our condition. According to this one study I found on Dinet.org, Shortness of breath is a symptom of 27.6 % (Grubb, 2000). So it seems pretty common. This is my chief symptom and my scariest one, so I hope I get a lot of responses because I want to put together a list of who has this symptom, what type of POTS they have (i.e. Hyperadrenic, Neuropathic, etc..), what underlying cause they are aware of for POTS or the shortness of breathe (if they feel its separate) and what medications are working for this symptom. If you want skip my story straight to the bottom 3 questions Here's my POTS breathing problems story. In 2005 I has pretty normal and healthy. I had decided that after years of inactivity (because of lower back injury in High School while playing tennis) I would start to get back in shape and I started biking long distance. After the spring, summer and fall of 2005 I could just about bike 20-30 miles. I was feeling great about myself. In the winter of 2005 I got food poisoning from chicken and then a stomach flu in December of 2005. I lost a little weight but recovered. Then I decided to paint the basement where I had been renting an apartment so I could move some exercise equipment downstairs to make more room in other parts of the apartment. Big mistake, i painted myself and the room was not well ventilated and I used a thick special paint to coat the cinder blocks with. 2 weeks after the painting I decided that it was too cold to bike so I would try my new treadmill. I started running and after 5 minutes I noticed my pulse went up to 190, and I was way too overheated even with drinking water and then all of a sudden I couldn't breath. I instinctively ran outside took off my shirt to cool off in the freezing weather and it worked to help my breathing. Then about 2 weeks later it snowed and so I dressed very warm and was excited to start shoveling (it was pretty outside). I started shoveling very fast and again found that I was super overheated and could not breath, so I had to undress in the snow and again that saved me. At this point I knew something wasn't right but I ignored it again. one week later I went to bed late, a little dehydrated and I woke up 3 hours later with my pulse racing and I found it hard to breath. I took a shower and it didnt help. That was my 1st trip to the ER. In the ER they gave me Albuterol nebulizer and tested my heart. My heart rate was 150-160 initially and for 24 hours would not drop below 120. Wow I was scared and worried. After 20 hours they gave me a Xanax I passed out from exhaustion and they said while I slept my heart rate was 80-90. But when I woke up it was back to 110+ and still not breathing great, but they sent me packing with some Xanax. I got home and then 4 hours later went to a different ER. Same thing another 24 hours they sent we walking having me thinking it was anxiety. But along with the heart racing and breathing, I was completely disabled and fatigued with chest weakness for 3 weeks+. I went to a Cardiologist, he didnt find much besides the racing heart after all the typical cardio tests. I saw a shrink didnt do much, he actually fell asleep during one sessions haha. Then about 4 weeks after the attack my breathing was still suffering so I saw a Pulmonologist. He told me the tachycardia was because of Albuterol and that I should switch to Xopanex. He gave me a powdered inhaled steroid (Asmanex) and tried me on Singulair. I wasn't feeling any better so he told me to keep increasing my Asmanex until it works. I upped it from once a day to 4 times a day. It was a miracle, It started working and I recovered. I hadn't had a major attack until January of this year and if my breathing acted up I would just take Asmanex. I stopped Singulair after 6 months and i would carry around the Xopanex but never use it because I didnt want the tachycardia. Fast forward to this year. I've had 6-7 attacks, mainly walking to the train from 10 blocks away. The first two helped me to lose my last job. The last two are what helped me diagnose myself with POTS. I ended up in the ER 5 weeks ago, my Asmanex wasn't helping or at least enough, so I finally used 2 puffs of the Xopanex (which irritated my trachea) and both were not helping. I was driving, and the nearest hospital was 20 minutes. I willed myself to get there and almost passed out a few times. When I got there, I was very tachy and my breathing was like breath hunger. My oxygen level was good. They treated me for asthma. But everyone thought I was crazy. I felt like an elephant was sitting on me I could barely move. After two days they basically kicked me out. I went home and my body shut down, it was scary. I researched and researched. I got an oximeter. After a week of doing breathing flow meter readings I stared to write down my pulse. I thought I had IST but then I realized the huge differences in pulse in positions. Yup like many of us I figured it out on my own, then I made a POTS specialist appointment and the Dr. confirmed it for me, but that same day I wore myself out at this new job 2 hours away and ended up in the ER 1 week ago. Back to my Post subject. So I have tons of POTS symptoms, but now I'm on the hunt for something that will help me especially with breathing. My breathing is worsened by heat, walking, walking upstairs (I'm trapped on my 3rd floor walk up apartment), fatigue (especially at night), dehydration, stress, Allergies (for the first time I counldn't breath after touching a dog, I grew up with a dog and cat and never happened before, I'm a big animal lover), GERD and exercise. Right now I'm taking 6 Asmanex inhales a day (doesn't help that much), I started Singulair again (1 week so far), And Prednisone from 5mg-30mg (that seems to help the most but gives me really bad acid reflux and makes my breathing worse. I'm taking Nexium and Zantec to help with that). I take B-12 1000mg for fatigue (helps a little). If I have really bad breathing I take Xopanex nebulizer (it helps a little not not completely, but gives me tremers , makes me lightheaded but only makes my heart beat go up 10-15, that's another reason I learned I had POTS, it doesnt make me as tachy for that long as the pulmonologist said). I'm going to find a top Pulmonologist to look for COPD, ILD, Sarcodosis, and Lung Caner and an Allergist for mast Cell disease. Maybe check out my Liver which could affect breathing. If anyone has any of these can you let me know your story. I've read that some of these can cause POTS.. Can everyone list: What type of POTS do you have (i.e. Hyperadrenic, Neuropathic, etc..)? What underlying cause are you aware of for your POTS or the shortness of breathe? What Medication are working for this symptom? Thank you everyone! Rich
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