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Everything posted by Pistol

  1. Your heart will not just stop beating because of dysautonomia. If there are any issues with potentially serious arrhythmias hopefully they will show up in the heart monitor that is ordered for you. Make sure yo push the button every time you feel something irregular in your heart!
  2. @Scout - sorry you are in the hospital. I was on several meds ( including different BB's ) and found CC ( calcium channel blockers ) extremely helpful controlling my BP. I also get very worried about potential side effects from meds but have found that we cannot find out if they help unless we try. My docs usually start with the lowest dose ( often even pediatric ) and go from there - if I do OK they increase slowly. CC are totally worth a try - be brave!!!!
  3. @RecipeForDisaster about the rib pain: I have symptoms of Ankylosing Spondylitis and my PT is convinced I have it, especially since MRI's are also suggestive of it. AS causes spine deformities and stiffness in the rib cage, in my case this causes rib pain and restricted breathing, like you mentioned. AS is also an AI syndrome - therefore the rheumo might very well be interested in the rib pain and shortness of breath, make sure to mention it!!!!
  4. @RecipeForDisasterI am in the same boat. I have to see a rheumo for the first time since I had a severe AI reaction from a recent double ear infection. I had general AI symptoms for years but ANA and CRP was always OK ( ESR elevated though ). I am very concerned about seeing another specialist that is "just" educated in his filed, but may not realize about all the nuances of dysautonomia. I am scared that they may not realize the degree of medication sensitivity we have - so I will ask the rheumo to check with my autonomic specialist before starting any big-gun meds. I also get very bad from infections, so I understand where you ae coming from. I - in my case - have decided to hear what they have to say and then go from there. I hope you will find the rheumatologist to be kind, experienced and knowledgeable!!!
  5. @Pre - https://ww2.mc.vanderbilt.edu/adc/38932 this is the proper and current parameter for POTS diagnosis
  6. @freewill45 - I too recently had a CT scan and they found a nodule in my pleural space ( not the usual lung nodule ). I also have to wait 6 months ( October ) until they will recheck the CT. Just be positive and hang in there!!!!
  7. @JimL and @misseb: have you tried to cut down big meals and do 6 small snacks a day? This has helped me greatly for my dysautonomia related GI issues ( nausea, fatigue, post-prandial hypotension and syncope, hypoglycemia ) and I have even gained weight with it!!!
  8. @Clb75, @toomanyproblems: thank you so much for responding, you have given me a lot to consider before talking to my doc tomorrow. I truly appreciate your Input!!!
  9. Hi - I have hyperadrenergic POTS with both hypo-and hypertension. I am currently well controlled and my BP has been stable, thanks to IV fluids on a weekly basis as well as a myriad of meds. I recently experienced a severe double ear infection and developed an autoimmune reaction ( also have AS and now possible Sjogren's syndrome as well as other AI symptoms ). I will see a rheumatologist in the bear future but in the meantime am taking Turmeric ( cannot take NSAIDS ) and now am considering a trial of steroids. Here is where my question comes in: has anyone on this forum that deals with BP fluctuations from hyperPOTS had any negative effects from steroids? My autonomic specialist has warned me in the past that steroids would most likely send my BP through the roof, so I have been avoiding them. However - my symptoms are now serious enough that I want to try a trial of Prednisone or Medrol dose pack, despite the warning. Since my BP has been stable for over 6 months I am hopeful that all will be well but on the other hand I do not want to wake up the dragon ( meaning trigger POTS ). Any Input, warnings, encouragement or experiences? Thank you in advance.
  10. @RecipeForDisaster - based on your symptoms and a positive ANA they should be able to "label" you with autoimmune, and hopefully they will be able to treat you. Having said that - they may not address the orthostatic issues like your hypotension and syncope. Although research suggests that there is a link between dysautonomia and AI it is still a very new finding and I suppose it is possible that they want to just concentrate on the AI issues. So - I guess I am saying don't expect them to connect the two issues. But if they diagnose you and treat you for your AI related symptoms the dysautonomia might improve as well. Best of luck - think positive! Please keep us posted on your visit!!!
  11. @Petrichor11 - have they ever done an MRI? Have they considered a CSF leak?
  12. Hello @Mom of 4 - I am so sorry that you are being told this. I have hyperadrenergic POTS, NCS and autonomic seizures. I used to faint all the time, fall out of chairs etc. At some time the syncope turned into what appears grand mal seizures ( all muscles stiffen, my back arches and sometimes I block my own airway during this ). These seizures where often witnessed by doctors, even happened at my autonomic specialist. I had them when under anesthesia during surgeries, during MRI's … you get the point. Still, I saw 5 cardiologists and some of them insisted that this all due to anxiety. Once I was diagnosed by my specialist he told me about the difference between convulsive syncope and autonomic seizures. I then stayed 4 days in an Epilepsy Monitoring Unit ( EMU ) at a University Hospital. They monitored EEG and Telemetry as well as me boing on camera 24/7. On the third day I passed out - When I fainted the EEG flatlined ( meaning no blood flow to the brain ) and the telemetry showed tachycardia ( the heart attempting to get blood to the brain ). That is how they diagnosed the seizures as definitely non-epileptic. However - no way I could have faked that!!! I recently saw the neurologist that was treating me at that time and she is still telling people about that!!!! When they did your TTT - did you faint? If your spells are still this bad you really should be re-evaluated, 2008 was 10 years ago! What doctors have you seen for this - neurologists, cardiologists, autonomic specialists? How often do you pass out/ take seizures? I am much better although partly due to me having to stop working and being housebound. Despite being in very capable hands with my doctors and specialists ( now! ) I was medication-refractory and am being treated with weekly IV fluids, which in my case have stopped the seizures all together and I barely faint anymore. This is due to the added volume keeping a steady pressure in my blood vessels, which in turn does not trigger the ANS to dump norepinephrine and constrict the vessels. That is the assumed mechanism behind my symptoms. www.dysautonomiainternational.org/pdf/Riviello_AutonomicSeizures.pdf This is some information about these seizures - I hope it is helpful. Please see a specialist that is familiar with these episodes and with dysautonomia in general. PM me if you have any questions. Best of luck!!!!!!
  13. @Sarasw - yes, I have hyperadrenergic POTS and was told to increase both fluids and salt. Since hyperPOTS often causes hypertension they recommend to check your BP to see if the salt increases it. In my case I have both hyper- and hypotension, so I really cannot go by that. But I have craved salt all of my life, even as a child, which is quite common in POTS. My local cardiologist encourages me to use salt freely despite my at times high BP - I would pass out without it!!! -- BTW - I am the one that improved with IV fluids that you mention in your post and it is important to increase both salt and fluid together. Also - electrolyte rich drinks such as sports drinks help me much more than just salt and water. However - my PCP checks my electrolytes regularly since I am on IV fluids - to make sure that everything stays within normal limits. So - if you use sports drinks you may want to ask your PCP to check your e'lytes at times. I too experience polyuria ( frequent urination ) when I drink water. Normal Saline infusions used to do the same. LR infusions are rich in many electrolytes and help the fluid to stay within the blood vessels, therefore interrupting the faulty mechanism that leads to norepinephrine dumping and vasoconstriction. in my experience sports drinks were better for me. See - In our bodies water goes wherever sodium goes - if you pee a lot you loose a lot of salt.Here is an article that explains it: https://www.merckmanuals.com/professional/endocrine-and-metabolic-disorders/fluid-metabolism/water-and-sodium-balance However - if your BP is high consistently then you may have to avoid JUST salt since it CAN increase your BP.
  14. @ANCY - 30 seconds is GREAT!!! Good for you - you are a trooper!!! I hope you can get in the saddle on the horse soon. We live near a therapeutic horse farm and they have saddles specially made to support paraplegics - maybe something like that could speed up the process for you? That way you would not fall off the horse if you pass out. Wishing you the very best!!!!!
  15. @Rachel Ann - sorry about that!!! I know what it is like but here is what I have learned: IF I am having a good day I still only do what I do every day, I do no longer feel that if I am feeling up to it I could do heavy work. I developed a routine of doing chores and resting inbetween that works good for me and I follow it regardless of how good I feel. That prevents me from burning out, like you describe. Having said that - I also do mild exercises every day, good or bad. Most recently I am using a rowing machine, which is excellent exercise for someone with orthostatic intolerance. I do what I can twice a day and when I am unwell I do it once a day. That keeps me within my routine and prevents me from overdoing it - or underdoing it, which causes debility and makes OI worse. And yes - heat WILL drain the sap right out of me, on hot and humid days I stay inside or only go out early in the morning or in the evening, when it cools down. If I have to do work like you describe I do not so the dishes after - I don't care if they sit, or I ask my family to do them. I hope you recover soon!!!!!
  16. Hello @"It's not POTS!" Mom - thank you for sharing your story ! I am sorry you had to go through all of that, but I am glad that you have found relief. I do not have the same issues as you ( I have hyperadrenergic POTS and need IV fluids for different reasons ) but I am sure that your story will help some people who may share similar symptoms. I do however share your experience with ignorant doctors. I had to do my own research and got diagnosed within 2 years of onset of symptoms because I read, brought articles to my PCP ( who by the way was my life-saver b/c he always listened and referred me to whoever I needed to see ) and eventually , after firing 5 cardiologists, was diagnosed by an autonomic specialist who confirmed my diagnosis with labs. Since then it has been an uphill-battle but I finally found the right treatment for me ( I am medication refractory ). Unfortunately our stories of having to fight the medical community to be taken seriously is common amongst dysautonomia patients and for me was one of the most worrysome facts of having a chronic condition. Many of us have to advocate for ourselves and often doctors do not want to hear that we are more aware of our issues than they. As @Sarasw, the OP, mentioned in her original post: Doctors often do not understand dysautonomia and - worse yet - I have encountered numerous physicians who did not WANT to know about it, even deny that it even is a real diagnosis or condition. Therefore what we are doing in the way of sharing our stories, finding answers and doing our own research is an important way to find answers. Be well - and stay on top of your health!!!!!!
  17. I bought a rowing machine and can do 2 minutes on the lowest resistance setting twice a day!!! I survived a nasty double ear infection without a major flare ( thanks to weekly IV fluids ) and I went to my daughter's dance recital a few weeks ago. Oh - and I cooked stir-fry, which requires a lot of standing-at-the-stove time and usually does not go over well.
  18. I just purchased a cheap rowing machine ( bottom-of-the-line ) and I LOVE IT!!! It is perfect for my abilities, I am starting out at 2 minutes 3 x day on the lowest resistance setting and it just brings me to where my HR goes up ( desired effect ) but I do not get drained. It uses legs, arms and core - so I no longer have to do separate exercises to target those individually. I am planning on increasing the exercises as per my tolerance and am very optimistic about this. Thank you @Hhh16 for sharing this !
  19. @Derek1987 - a handheld fan is a great idea! In the past - before finding treatment - I used to get so hot in public as well, but if I had to get up to catch some air I would faint … so the idea of a good fan totally makes sense! It may have prevented a few of those "falling out of a chair faints"!!!
  20. @katcanny - great news!!! That IS a break-through!!! I too know the immense feeling of victory over these "small" achievements - and it always gives me such hope when it happens!!! Keep up the good work!!!!
  21. @jayut - the only time I experienced scalp tingling ws when I took Midodrine - are you on that by any chance?
  22. @jvherenow - try Ringer's solution rather than NSS, it works much better. NSS made me swell up and pee it out, whereas Ringer's stays in my blood vessels, decreases my BP, does not cause excessive urination and the effects last much longer. 1 infusion weekly is all I need to see results for that whole week, NSS worked for about a day or two.
  23. @jvherenow - NSS is simply o.9% saline solution. Lactated Ringer's contains Sodium Chloride. Sodium Lactate, Potassium Chloride, Calcium chloride. It is often preferred during surgeries b/c it helps to keep the fluid within the blood vessels, which means it increases the circulating blood volume. Saline just puts more fluids in your vessels and is more used for dehydration, shock or low BP.
  24. @Heartbroken - yes, you can print them out, everything on this site is public. That is a good idea and it is exactly what it is supposed to do - educate ANYONE about dysautonomia, not only patients. Also - there is a very helpful book called the dysautonomia project, you can get it on the website https://thedysautonomiaproject.org/ or on amazon. It is written by physicians for physicians and patients both. It is meant to be sheared with your physician. I have one and gave a copy to my PCP, another patient had already given one to my cardiologist. --- Good luck with your appointment!!!!!!
  25. @Derek1987 - my B-I-L is disabled from a bad back injury and on pain killers. He does not want to become addicted to them, so his pain management doc switches his meds every 2 months and recommended CBD oil to him. He uses it sometimes ( gummies ) and he claims it does help with feeling tense, especially when he starts getting afraid of getting pain.so I guess it does help with anxiety. I am not sure what it would do to BP and HR or adrenergic symptoms - check with your doc ?
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