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RichGotsPots

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  1. RichGotsPots
    haven't tried mestinon, but I heard it raises BP, mine is stable I dont know if I want to raise it? Is that the best acetylcholine med? I'm going to we a POTS neuro in January.
  2. RichGotsPots
    http://en.wikipedia....ion#cite_note-1 Endothelial dysfunction is a systemic pathological state of the endothelium (the inner lining of blood vessels) and can be broadly defined as an imbalance between vasodilating and vasoconstricting substances produced by (or acting on) the endothelium.[1] Normal functions of endothelial cells include mediation of coagulation, platelet adhesion, immune function and control of volume and electrolyte content of the intravascular and extravascular spaces. Endothelial dysfunction can result from and/or contribute to several disease processes, as occurs in septic shock, hypertension, hypercholesterolaemia, diabetes, it can also result from environmental factors, such as from smoking tobacco products and exposure to air pollution. I found a test to check for this. If there is another test for this let me know. This may be a big help for all of us. It affect every level of POTS. The test http://www.itamar-me...om/EndoPAT.html Prevention and treatment Endothelial function can be improved significantly by exercise and improved diet. A study published in 2005 has determined that a positive relationship exists between the consumption oftrans fat (commonly found in hydrogenated products such as margarine and the development of endothelial dysfunction.[3] Other factors have been identified as improving endothelial function and include cessation of smoking, loss of weight and treatment of hypertension and hypercholesterolemia amongst other things. Some studies have found antioxidants,potassium[4] and arginine supplementation to restore impaired endothelial function.
  3. RichGotsPots
    interesting to note that endothelium regulates this and as noted in Wikipedia certain drugs that are Cholinergic may dilate or constricted depending whether the endothelium is damaged. How many of you know if your endothelium is damaged? BTW is regulates Nitric Oxide... This may be one reason some of us react differently to certain meds even if we have the same type of POTS... Regulation of vascular resistance There are many factors that alter the vascular resistance. Many of the platelet-derived substances, including serotonin, are vasodilatory when the endothelium is intact and are vasoconstrictive when the endothelium is damaged. Cholinergic stimulation causes release of endothelium-derived relaxing factor (EDRF) (later it was discovered that EDRF was nitric oxide) from intact endothelium, causing vasodilation. If the endothelium is damaged, cholinergic stimulation causes vasoconstriction. A cholinergic drug, also known as a cholinergic agent, cholinergic agonist,[4] or a parasympathomimetic drug,[5] is any drug that functions to enhance the effects mediated byacetylcholine in the central nervous system, the peripheral nervous system, or both. These include acetylcholine's precursors and cofactors, acetylcholine receptoragonists,acetylcholinesterase inhibitors and cholinergic enzymes: Acetylcholine receptor agonistsAlvameline Muscarine (muscarinic receptors) Nicotine (nicotinic receptors) Pilocarpine (M3 receptors) Suxamethonium (muscle type receptors) Acetylcholine receptor antagonistsScopolamine Dicycloverine Tolterodine Oxybutynin Ipratropium Mamba Toxin (MT7) Pirenzepine Telenzepine Acetylcholinesterase inhibitors (abbreviated AChEIs)Donepezil Galantamine Huperzine A Neostigmine Physostigmine Rivastigmine
  4. RichGotsPots
    Whats RLS?
  5. RichGotsPots
    I'm starting to think the SOB issues are a combo of Pooling (after standing or eating), fibrosis of the lungs (getting a high resolution CT scan to test for this, there are many many causes, chemical inhalation being one cause), slight asthma (which may be Mast Cell related and/or allergy related some other syndrome related. But I also want to rule out Liver issues, hormonal imbalances and neurological/muscle issues...
  6. RichGotsPots
    I'm going to have to disagree with you, I have POTS and no dizziness. I think the ones who have the dizziness have BP issues, usually lowered or variable. No all POTS patients have this.
  7. RichGotsPots
    Cf I have the same thing, my feet are freezing most of the time even with socks on and the room at 77 degrees. If I stand for 5+ minutes my feet are throbbing almost like pulsing and just in pain. I don't notice discoloration but then again I'm always wearing socks lol I'm doing to try to take them off when it happens now. Do you think what we have is pooling had anyone ever tested you for it?
  8. RichGotsPots
    Hi Sue, what type of doctor tested you for VIP and do you know what the test is called? Problem with all these blood tests is the doctors never order a full screening and if they don't ask for something the labs don't look for it... I'm happy at least you know what is going on now. Also I'm curious, how do you know you had flushing? I have breathing problems and my chest gets red, does that mean I'm flushing. My face doesn't get that flushed though... But I over heat and dehydrate very easily.
  9. RichGotsPots
    Some international flights have these in economy class..
  10. RichGotsPots
    I don't lower BP just high tachy and very bad breathing issues. Overheated, cold extremities, bad fatigue, leg, feet and back pain
  11. RichGotsPots
    what are the main symptoms for this, any breathing issues?
  12. RichGotsPots
    Any idea how we test for pooling?
  13. RichGotsPots
    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!
  14. RichGotsPots
    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..?
  15. RichGotsPots
    Ramakentesh, what makes you think this, it has been observed, but was it observed in you? Can you give us more background?
  16. RichGotsPots
    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..
  17. RichGotsPots
    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
  18. RichGotsPots
    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!
  19. RichGotsPots
    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
  20. RichGotsPots
    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!
  21. RichGotsPots
    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
  22. RichGotsPots
    Hi Fiona Jane, thanks for your response!
  23. RichGotsPots
    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
  24. RichGotsPots
    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?
  25. RichGotsPots
    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
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