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Everything posted by Pistol

  1. Hello @MikeO - welcome to the forum! I took pyridostigmine years ago and had to stop for the side effects. I do not remember which exact effects they were but i know that the specialist took me off it. In any dysautonomia it s common to experience medication sensitivity, and that is why finding the right treatment can be so frustrating. It is possible that the cramping and bowel emptying is caused by IBS-D, which also can be a symptoms of dysautonomia, but is listed as a side effect of Pyridostigmine. I would discuss it with your doctor and consider decreasing the dose or even going off the med if your doctor recommends that. Ending up with these side effects can be worse that the symptoms the med is treating, and ongoing GI problems can interfere with your ability to retain enough fluids and salt.
  2. Hello @Teodor - what we generally mean by a "POTS flare" is when our symptoms are becoming suddenly much worse, normally following one of many triggers ( illness, weather changes, stress, injury, diet changes or changes in hydration, too much or too little activity ... ). For example - one might become bedridden, unable to get up without fainting or severe symptoms of tachycardia, BP changes etc. We often are extremely fatigued but cannot sleep, we may be too nauseated to eat or drink, we sometimes cannot even walk to the bathroom. Of course not everybody's flare has to go to that extreme - some simply are too tired to work and return to severe symptoms despite the normally effective medications. So - in other words, if you see a sudden peak in your POTS symptoms it is probably what we refer to as a flare. Most POTS symptoms come and go, and there are times when we feel good and times when we - often for no reason - become bad and the disabling symptoms come back. That is ONE of the reasons maintaining employment can be hard for POTS patients - when a flare hits we most likely will not be able to go to work ( or do house chores etc ), and there is no guarantee how long it will last. For most of us overcoming a flare means lots of rest with periods of very light exercises as to not become deconditioned, avoid stimulation or stress, replenish salt and fluid and simply wait until it blows over. Sometimes that can be a few days and other times it can be weeks or even months. Flares are unpredictable and make life difficult, but eventually they are overcome, and symptoms become bearable again. I hope you do not experience flares?
  3. @Amy45 - I am sorry to hear about your troubles! I do not have any Input on the nature of your throat tightness ( other than it commonly occurs as part of an allergic reaction ), but I want to mention that I take Flexeril ( Cyclobenzaprene ) - a muscle relaxant. I take it for the the muscle spams that come from elevated norepinephrine levels in HPOTS. This medication tends to make me sleepy but otherwise has no negative effects on my POTS. Maybe your doctor does not believe this type of medicine would help your symptoms? However - it might be worth trying!
  4. Have you ever looked into bone broth? It is rich in electrolytes, can be organic and also fat free, and you can add as much salt as you like. It is rich in calcium - of course - but I am not sure about potassium.
  5. @Platypus - I am glad you found relief! Yes, taking in electrolytes or electrolyte rich fluids is very important, and proven to be effective in most cases. There are several threads on this forum regarding this topic. Some people swear by broth, others use coconut water and many find the best relief with sports drinks ( although the latter contain a lot of sugar as well ). And then there are the electrolyte powder packets you can dissolve in a fluid of your choice. I hope you continue to feel better!!!!!
  6. @E pots - do you mean you have been denied by your long term disability insurance? Or by SSDI? In my case I was approved by the LTD but denied twice by SSDI. I had an attorney ( provided by the LTDI ) after my first denial. It is very common to be denied based on POTS symptoms alone - despite being bedridden, passing out and taking seizures even when lying down they denied me twice. SSDI goes by diagnoses - I was not disabled enough with seizures and also was not on any seizure meds in my first denial. The second denial was based on hypertension and tachycardia. Only when I - after 2 years - had an in-person hearing with an Administrative Law judge did I get approved. The judge was able to hear from me how POTS affects my life, from fainting in public when out of bed to being unable to cook or do light chores around the house to being unable to care for my child. All of this was not taken in consideration during both "paper applications", but he approved me 100% on the spot. The most important fact to repeatedly point out is that our symptoms are so unpredictable that it leaves us extremely unreliable in way of being able to show up for work. Some days we may be able to do work for two hours and then - from one second to the other - become bedridden for days or even weeks. This makes us unfit to work in ANY fashion. My employer even sat me at a computer for only 6 hours 3 days a week and it was too much, I still ended up having to leave work due to fainting etc. And I was not able to do my job because of the brain fog that comes with cerebral hypo-perfusion. Another important thing is that you need to be completely on the same page with your docs. In most cases specialists do not get involved in the SSDI process - that is the job of the PCP. But the PCP needs to get documentation of all findings of specialists, and needs to be informed about all treatments and meds you try - this way he can document that you are not responding to meds commonly effective in treating your illness. My doctor wanted me to stop working before I did and he documented everything that kept me from working in his notes. When it came tome to provide that documentation to SSDI it was all there. Keep a record of all appointments and all letters your specialists send to your PCP - that way you know what everyone does. If you don;t agree with a specialists recommendation make sure you bring that up to your PCP. If you don;t have a good PCP - find one. I personally would absolutely look for a disability law firm. I did not go with a local lawyer but had a law firm from out of state that specializes only in SSDI - there are many reputable lawyers like that and everything goes via email or mail, so a face-to-face is rarely necessary, and of so it can be done online. SSDI lawyers do not get compensated until you get approved and get your settlement - their cut gets automatically deducted when SSA distributes your money, so you will not be involved in that process at all. Don't get discouraged or overwhelmed - it is a really long and frustrating process. Many people have to go on medicaid until they get approved - there is no shame in that. It's cases like yours that these programs are for. You are not alone, and it will all be OK.
  7. @yogini - lets hope that's all it is! I wish you all the best, and a quick recovery .
  8. My mother had to have a thyroidectomy and was told that it is virtually impossible to remove ALL of the thyroid tissue due to its proximity to the vocal chords ( or is it the voice box? ) So she also had radioactive treatment to destroy the rest of her thyroid. I have definite signs of auto-inflammation ( IC, gastritis, swollen painful joints, skin breakouts etc ) but most of my blood work is negative. The only lab that is elevated periodically is the ESR ( which is a general indicator of inflammation ). CRP is a more direct test to diagnose inflammation or even AI. I am not aware that these tests are commonly elevated in POTS patients, but I assume that it could be if the cause of POTS is of inflammatory origin. Here is an article about this: Autoimmune markers and autoimmune disorders in patients with postural tachycardia syndrome (POTS) - PubMed (nih.gov) Quote "Conclusion: Patients with POTS have a higher prevalence of autoimmune markers and co-morbid autoimmune disorders than the general population. One in four patients have positive ANA, almost one in three have some type of autoimmune marker, one in five have a co-morbid autoimmune disorder, and one in nine have Hashimoto's thyroiditis.
  9. I am not able to take NSAIDS for the same reason. Dysautonomia in my case caused severe GERD and as a result I cannot take meds that are aggressive on the GI tract. What has helped me immensely is Turmeric - a spice that has known and powerful anti-inflammatory properties. For GI problems, especially ulcers etc, my GI specialist ordered a combination of H2 blockers, acid reducers and something called GI cocktail ( Mylanta, viscous lidocaine and phenobarbital ). This mix healed the erosions caused by the increased acid production, including Barrett's esophagus - a pre-cancerous abnormality of the lining of the esophagus. Make sure you consult a GI specialist for your symptoms!
  10. Hello @Bobannon - this all sounds very scary! I also have a history of passing our daily, despite the usual self treatments. Beta blockers commonly cause a loss of energy and feeling tired - most often this goes away after a few weeks, once your body adjusted to being on them. However - ANY medication you take should DECREASE episodes of syncope. You should inform your prescribing physician right away of an increase in syncope. In POTS most cardiologists order a beta blocker for the tachycardia, as well as the ectopic beats. Chronic inflammation can be a cause of dysautonomia and the cause needs to be investigated. I too suffer from POTS as well as chronic inflammation, and since my autonomic specialist started me on Plaquenil for the inflammation both inflammatory and POTS related symptoms have improved. This is a very good idea. Exercise is essential in overcoming POTS, and in a cardiac rehab setting your HR and BP will be monitored during the exercise, so they will be able to not only see what is going on but also assess your tolerance to exercise. When I was at my worst I passed out when I would be active - if that is the case for you they will be right there and report any abnormalities to the physician that ordered the rehab. Unfortunately it is the norm that autonomic specialists have very long waiting lists for new patients - most of them over 1 year. In the mean time it is important to have a close relationship with your PCP, who will need to address any serious symptoms such a syncope, chest pains etc. I had to wait one year and in the meantime saw 4 cardiologists that were equally useless in treating my POTS - I hope that is not the case for you. Today most physicians have a basic understanding of POTS, but often that does not go past fluids, salt and beta blockers. I am lucky to have an excellent PCP who tried really hard to control my symptoms while waiting for the specialist. I agree with @CJ65 that measuring your HR and BP frequently is important, and keeping a diary of those numbers as well as your symptoms can be extremely helpful to your physicians. I also keep a note book in which I record any questions I have for the different docs and that I take to appointments with me. That is the only way I can assure that all my problems get addresses during appointments or phone calls. And don;t be afraid to make a pest of yourself - only if your docs know what is going on can they make necessary changes to your treatment. Recurring uncontrolled syncope is NOT OK - so you need to make sure your doc knows about it.
  11. Hello @Omegaprime - I am sorry you are having such a rough time! -- The symptoms you describe sound like they could have different causes, not necessarily dysautonomia. Chronic fatigue is - as the name states - a chronic ( and not temporary ) state of fatigue and exhaustion. It does not go away after a few weeks. Temporary fatigue after any viral infection is to be expected. This - and the sweating - can also have different causes. For example: both can simply be from the heat and humidity of this summer. Most dysautonomia has increased symptoms upon standing. Orthostatic hypotension, POTS, neuro-cardiogenic syncope - all these dysautonomias have symptoms brought on by being upright. Do you feel that your symptoms are worse when standing?
  12. Thanks @toomanyproblems - that is really interesting!
  13. I am waiting for my books to be delivered to my friend. We live in different states and send each other books when we are done reading them. Then we "review" them and talk about them on the phone. Its fun - we started that during the quarantine and now we are continouing it.
  14. @MTRJ75 - that is why with dysautonomia it is recommended to eat frequent small "snacks" rather than actual meals. I follow this regimen and find that as ong as I keep something in my stomach all the time I have less hypoglycemia and less dysautonomia symptoms
  15. @sunbun - how scary! I am sorry you are having such a hard time. I have HPOTS and NCS and used to have daily episodes of presyncope, syncope and autonomic seizures. The latter caused by sudden vasoconstriction causing cerebral hypo-perfusion and the syncope caused by sudden vasodilation causing the same. I am VERY familiar with the prodrome symptoms of syncope as well as the symptoms of recovering from it. I have never had any type of hallucinations or psychosis from either scenario but I do have visual disturbances such as tunnel vision, floaters as well as dimming vision before and after the episodes. I assume that it could be possible to experience hallucinations from not enough oxygen reaching the brain, as well as from anemia if it is severe enough. I would be careful and if it repeats I would notify your doctor.
  16. Love your cats, @Derek1987. Thanks for posting!
  17. @yogini - I am so sorry you had to go to the hospital! I hope all will turn out OK and they get the bleeding under control without a transfusion. --- I can see how reassuring it must be to come to the hospital in such a state and to be met with understanding and competence regarding POTS. Things are changing! Good job to the staff of your hospital, I hope this trend will spread!!!!!!! --- Best wishes, get better soon!
  18. @toomanyproblems - hypoglycemia and glucose intolerance have been a problem for me since childhood, and both run in my family. So does POTS ( runs in the women of the last 3 generations ). I seem to get severe and sudden drops in blood sugar when I eat high sugar meals ( like pancakes with syrup ), with symptoms of sweating, hunger and weakness. When checked during these symptoms my sugar has been as low as 54. I know the symptoms and can stop the attacks right away by eating easily digested sugar along with some protein and carbs ( grapes or juice with peanut butter or cheese seem to do the trick fastest ). Yes, my autonomic specialist conformed that this is quite commonly related to autonomic dysfunction.
  19. @Knellie - do you need a referral to see a specialist with your insurance? If not you can just schedule an appointment with an ENT or other specialist for the sole purpose of being tested for CSF leak. If you do need a referral I would make a list of all the symptoms you have that are symptoms of a leak, present them to your PCP to show that there IS a potential for a leak in your case and demand to be tested. For a doctor to refer you there has to be a valid reason - the more symptoms you can present the better the chance of getting referred. There has to be a need to rule it out. The same goes for any testing he may order - he will have to list a symptom or diagnosis that warrants the test in order to get the insurance to approve it.
  20. @Heartbroken the fact that you have confirmed POTS and had 3 TTTs probably does not warrant another TTT, the diagnosis has already been made. With all of those diagnoses it WOULD be hard to pin point what is caused from what. EDS and Auto immune disease ( Hashimoto's ) can both be an underlying cause of POTS, but unfortunately both are chronic disorders, otherwise treating those could potentially improve POTS. Reactive Arthritis can also be an underlying cause for POTS, since the newest research found a strong link between auto-inflammation and dysautonomia. Although not directly diagnosed with reactive Arthritis I do have ALL symptoms of it, including general joint pain and swelling (especially in knees), chronic bladder inflammation ( IC ) and elevated ESR. Only recently did my autonomic specialist ( who is involved in studies to prove the link between auto-inflammation and POTS ) start me off-label on hydroxychloroquine and - tada!!! - the joint pain, inflammation, fatigue and many of the POTS symptoms have improved, including tachycardia, BP and low energy !!!!! The rheumatologist had refused it, he wanted me to use steroids, however every time I was on them I flared horribly to the point of hospitalization. But the Plaquenil worked. Maybe this information is helpful to you or your doctors since it is possible that treating the underlying inflammation ( that obviously id taking place in your body ) can also potentially improve many of your other symptoms. Before Plaquenil what helped me ( I can't take NSAIDS ) was Turmeric - a known and powerful anti inflammatory substance.
  21. @CallieAndToby22 - most common causes for low blood volume is loss of fluid ( diarrhea, vomiting etc, ), actual blood loss or dehydration by not taking enough fluid in. it means that the FLUID in the blood ( plasma ) is too low, therefore the blood is too concentrated. Like chili - if you cook it too long and too much water evaporates it gets thick like glue. In some cases the body then thinks it is bleeding out and constricts all the vessels. In other cases the BP drops because the heart can't easily pump all of that "thicker" blood and the heart pumps faster to compensate. The way to fix or counteract ( and even prevent ) low blood volume is by replenishing fluids - whether by mouth or by IV. When someone pees as much as you naturally they will be loosing a of of fluid. To keep fluid in the blood vessels we also have to take in salt. With me the same happens that happens to you: if I drink tons of fluids along with salt I still pee it out and become hypovolemic. The only way it works for me is by getting IV fluids. Even NACL ( salt water ) infusions go right through me - for long lasting benefits I need Lactated Ringer's solution. LR seems to have a longer lasting effect on my HR and BP. Quote: Difference Between Lactated Ringers and Sodium Chloride | Compare the Difference Between Similar Terms "The key difference between lactated ringers and sodium chloride is that lactated ringers is a solution containing sodium ions, chloride ions, lactate ions, potassium ions and calcium ions whereas sodium chloride is a salt containing sodium ions and chloride ions." There is ample evidence in my medical history that LR helps me much better than NACL, and that oral salt and fluid replacement is ineffective. I am not sure if it is b/c of IC that I was diagnosed with long ago that causes me to urinate too much, or if it is because the high norepinephrine levels cause me to pee too much, or fo it is the combination. I know that whenever i get stressed or excited I urinate enormous amounts, constantly and too much to replace orally. IV LR stops all of that from happening, it controls HR, BP and urination. In a good week I can go up to 3 days between infusions and have minimal symptoms AS LONG AS I STAY WITHIN MY LIMITS.
  22. Hello @Autonomic.heart - welcome to this forum! I am sorry to hear you are feeling so poorly. I have HPOTS for the past 12 years but I also have NCS ( neuro-cardiogenic syncope, another type of dysautonomia ). For me the biggest difference in symptoms from other types of POTS is the increase of BP upon standing, along with tachycardia. The first monitored episode of syncope ( I was wearing a monitor at the time ) showed a HR in the 120's for 3 hours before passing out, with a HR in the 180's along with a BP of 160/110. The BP was measured while I was out. I was diagnosed with TTT as well as resting and upright norepinephrine levels ( both elevated ). I too suffered from extremely labile BP. In HPOTS the BP often increases upon standing, and the lower number typically is very high ( diastolic hypertension ). A BP of 180/150, as you describe, would be dangerously high ( if it was taken correctly ). For me also the BP goes up and down constantly - when it drops too fast I pass out and when it goes up too fast I have autonomic seizures. The fact that you describe "anxiety" along with your spikes would lead to the suspicion of HPOTS. I always describe it more of a sensation of restlessness, excitement and impending doom rather than anxiety - I have had anxiety before but it is definitely a different feeling from what I experience from high adrenaline. Other symptoms to look for ( that are typical for HPOTS ) are cold hands and feet, tremors, yawning, chest pain and strong, fast heart beats - like your heart is jumping out of your chest. These are all symptoms of hyperadrenergic episode. Here is an article from our website that explains HPOTS, I hope it is helpful:
  23. @Heartbroken- it is possible that the docs want to only look at the symptoms they KNOW, like SVT and atrial tachycardia. They might explain all your symptoms are from that instead of dysautonomia. Having diagnoses that they can treat often overshadows the necessity to deal with POTS. Since your last TTT was so long ago I would ask for another one, if you have worsening symptoms upon standing this test would be appropriate, no matter what the doc thinks. In POTS we develop sinus tachycardia upon standing - SVT or AT during it would not necessarily confirm a dysautonomia diagnosis. So as far as I know if you develop sinus tachycardia they would have to acknowledge POTS.
  24. @CallieAndToby22 - whenever I have to have a - even minor - surgical procedure requiring anesthesia they bring me in first thing in the morning so I can get one whole liter of fluids prior to the procedure, and they keep me longer afterwards to receive more fluids. Doing so has minimized problems during surgery and shortened fares after.
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