Pistol

@HCD77 - I first became sick in 2009 and started passing out at work an everywhere with HR's in the 170's and BP's of 110/160. A TTT showed NCS - that was that. Because the docs all shrugged their heads and told me I am making things worse by taking beta blockers ( b/c it was "all in my head" ) I continued to go to work ( 12 hours shifts as a nurse ) and I made everything much worse. Soon my fainting spells turned into autonomic seizures and i would pass out sitting down, 5 cardiologists shaking their heads. I even had autonomic testing at a renowned autonomic clinic and was told that there was nothing wrong with me, to take salt tablets. When I finally got in to see my autonomic specialist he immediately conformed a diagnosis of HPOTS and started the long and frustrating process of finding the right drugs. As you see - your unfortunate story rings a bell for most of us here. Just do what you are doing: educate yourself, bring studies and articles with you to your appointments to show when they dismiss your concerns or symptoms, and WRITE EVERY symptom down, every time you feel like passing out, how long you can stand BEFORE SYMPTOMS begin ( appears to be a bit over 10 minutes for you ). That way they hardly can say you don't have dysautonomia simply because you needed 3 more beats for a "per-the-book" diagnosis. And presyncope cannot be dismissed. Don't be hopeless - most of us here were in your boat, and many still are. If a doctor dismisses you you are entitled to a second opinion - find another cardiologist and have him look at your TTT. Here is an article that proves the poinT; https://www.ahajournals.org/doi/full/10.1161/circulationaha.107.761643 Quotes: - The principal feature of POTS is orthostatic intolerance, defined as the provocation of symptoms on standing that are relieved by recumbence.1,2 Patients usually complain of palpitations, fatigue, lightheadedness, exercise intolerance, nausea, diminished concentration, tremulousness, syncope, and near syncope.3 POTS is a subset of orthostatic intolerance that is associated with the presence of excessive tachycardia on standing - It should also be remembered that other orthostatic intolerance syndromes exist in addition to POTS, in which symptoms occur in the absence of dramatic heart rate increases.6,7 - POTS patients have been reported to suffer from a degree of functional impairment similar to that seen in conditions such as chronic obstructive pulmonary disease and congestive heart failure, yet these patients are all-too-frequently misdiagnosed as having severe anxiety or panic disorder.4,5

@Knellie - I feel you! When I first got sick it took 8 years for me to even feel interested in anything! But now I found my niche: all year I have been making Christmas presents: home made jewelry from discount beads and other supplies ( I saw a huge sale online and bought a lot of great beads and just started to do it and quickly fell in love with it, it's addicting like a puzzle !) I also have been knitting presents: scarfs. pillows, sweaters, place mats ... it is easy to learn how and keeps you occupied while creating something! If you have a hard time reading, like many here do, audio books are great. It's much less triggering than music and you get to be at the edge of your seat while lying down ... 😂 Another thing I find fun to do is candle making - but It takes being by a stove for long periods of time, so a bar stool is needed. And it is easy - you can use up old candle stumps or buy wax online ( I make my own wax ) and there are tutorials on how to pour candles. I make pillars, that is really super easy and I can personalize them by adding color or other things like herbs or other wax pieces as well as scents. Sooooo many possibilities .... you can buy supplies for any of these hobbies online and instructions as well. Another good thing about these hobbies is that you can do only as much as you can at a time. Being creative really helps your mood! And I take 'exercise breaks", meaning I get up and do a chore or so in between projects to stay active enough. On good days I use my rowing machine ( a perfect exercise for POTS, IMO ). And then there are always puzzles ....

@KiminOrlando - hmmm ... odd! I keep hearing on this forum that doctors say MCAS is very rare and they probably don;t have it. Well - if no one tests for it OF COURSE it is rare!!! RA should not disqualify you from also having MCAS. I think the doctor needs to consider the symptoms and that MCAS can often be seen alongside dysautonomia - therefore I would ask to be tested for it. I went to the Allergist and asked for testing and it was negative - but I also know that accurate testing for MCAS can be tricky. IMO I don't get why a concrete diagnosis of another condition would out you at a lesser risk for having MCAS.

I have NCS and HPOTS and I used to faint whenever I stood a few minutes, also sitting at times. I also passed out during my first TTT. Twice now you mentioned that you almost passed out after 15 minutes of standing - that sounds like your limit. I understand that you are trying to become symptomatic to find out what happens but I would avoid standing for that long. Every time you feel like that your body has already worked really hard trying to keep your blood circulating and failed, meaning you already have operated on low oxygen to the brain for a few minutes. Every time that happens to me I experience worse brain fog for days after - so it is best to try to avoid standing. I truly wish that they will reconsider your TTT results, and maybe if you go back to that cardiologist and show him the results and tell him about almost passing out he will rethink the TTT. As far as I know presyncope is a reason to follow-up with the cardiologist to make sure it is not related to an arrhythmia. That will probably steer them back to dysautonomia.

I am so sorry @MTRJ75 that you are going through this. I was the same way before I found proper treatment, and I know how scary it is. My cardiologist explained to me that the PVC's happen when the sympathetic NS kicks in too strong and dumps adrenaline. This IS the Fight-and-Flight response and a feeling of doom or extreme nervousness is a part of it, as well as anxiety over our symptoms and what they might lead to. Due to meds, IV fluids and limiting triggers I rarely experience this anymore except for in a flare, but when it hits me it still is very scary. Keep trying to find the right medication combination and know that it CAN get better!!!!!

@HCD77 - I would definitely take these readings to the specialist. Also let him/her know what your symptoms were, especially presyncope after 15 minutes of standing.

This clearly would have to be decided by a physician. Although MS and POTS share many symptoms in the early stages the progress is different in MS.

@MTRJ75, @Ashc, @Muon Please note: the article is now pinned as a link under the Information Resources tab of this website.

Thank you @JenD - I am glad you are doing better since stopping it. My doc recommended against trying it and I take Flexeril ( 1/2 tab ) a few nights a week instead with good results.

@Nin - in the following article ( posted by another member previously on the forum ) focal autonomic seizures are explained and discussed in the neurology section of the article: Postural Tachycardia Syndrome A Concise and Practical Guide to Management and Associated Conditions

Hi @MTRJ75 - I always suffer from POTS when I get allergies, and yes - I too get an increase in palpitations ( and more ) when my allergies are active. This is related to histamine being a vasodilator - it will naturally worsen our symptoms, and since the vasodilation causes the ANS to react to it it makes the heart more irritable - as in tachycardia and PVC's. I even get triggered by insect bites!!! Daily Loratadine has helped me immensely with allergies!!!!

Yes, @Nin, for me syncope and seizures are different. And when I seize it is like a grand mal seizures, this was witnessed tons of times by medical professionals and also caught on EEG. But no - I cannot remember food ever having triggered a seizure. But that does not mean it can't - eating can stimulate the ANS, especially in dysautonomia.

Dear @HCD77 - I am sorry, I know you were excited to get answers!!!! This happened to me too when I first started with POTS symptoms. After my first TTT was positive for NCS my PCP had referred me to a major autonomic clinic for autonomic testing. They did the usual tests and everything was normal. They told me I did not have dysautonomia and sent me home on salt tablets. A year later I was seen by another autonomic specialist and he diagnosed me with HPOTS, based on my significant symptoms and he did neurotransmitters and they confirmed his diagnosis. Since then I have been with him for 8 years. --- I listened to Dr Grubb's lecture on dysautonomia during the DI conference last month. He was asked if people can have POTS despite a normal TTT, and he confirmed what is already known amongst the specialists in dysautonomia: a TTT is not the golden standard, there can be false positives and false negatives, and a TTT does not really mimic all of the triggers that send us into a tailspin. A physician who only looks at the numbers ( "sorry - you missed POTS by 3 BPM!" - 😬) and does not take the day-to-day symptoms into consideration is simply not a good physician. I am glad you are seeing another specialist, hopefully he will understand that your symptoms sound like POTS, despite the 27 BPM. --- BTW - my second TTT was determined to be normal, based on the opinion of the EP that read it. However - once I saw the autonomic specialist he told me that it was clearly showing POTS, the cardiologist just did not know how to read it. As you see - it is not uncommon to not have significant changes during the TTT but in real life be disabled from POTS! Don't put too much significance into this specialist. Despite the TTT he still needs to address all of your symptoms, and the treatment for those should be the same as if you were diagnosed with POTS. If he does not work with you and the neurologist does not either then you should see another specialist. IMO a physician who treats people based on numbers should be in mathematics - not in the business of treating PEOPLE!

@HCD77 - I am so sorry to read your story!!! I really feel for you, I understand being afraid of the virus when you are at high risk. Where I live ( thankfully in a very rural area with very few active cases at a time ) the health department takes care of the contact tracing. Anyone testing positive needs to quarantine and everyone they came in contact with gets a call from the department. They also then are to quarantine. This way our county has been able to prevent outbreaks, but I also understand that it may not work that way in more populated areas. You are right - COVID can be anywhere, and everywhere you go you should treat it as if everyone has it. You were smart wearing a N95 mask - that probably saved you from contracting it! -- I am mostly homebound and am not at risk ( other than POTS I am healthy ), so I don't get out much, but my family is very careful about using masks and sanitizer when out and about. I hope you stay well!!!!!

@Jwarrior77 - I get 1 L over 6 hours, over the years that has proven to be the best for me. Anything faster causes me to retain the fluids and pee them right out ( NSS does that to me too, that is why I use LR ), and anything slower does not correct my BP when it is high. Sometimes even 750 ml are enough, I do that when I am in a good spell. So - I do 1 L at 150 ml/hr.

Well - you should provide the link to the speech about POTS and seizures I posted earlier on this thread!!!!!! That'll set him straight!!!! What is wrong with these people? And he is your POTS CONSULTANT??? 😲 -- I don't know how it is in the UK, but here in the US I would report that doctor!!! He should not be allowed to treat people with Dysautonomia. Is there a number you can call to report a doctor? He needs to be told to educate himself about POTS if they allow him to treat that condition. I would also use this as proof that you have to see a real POTS specialist. If you need more literature proving him wrong just PM me!!!!!

Hello @kim.thomasin - welcome to the forum!!!!! I have HPOTS, no MCAS, but I do take autonomic seizures ( also referred to as convulsive syncope ). The symptoms you describe are very similar to what happens when I take a seizure from POTS. I also get extremely cold hands and feet before them. IMO it is maybe not the MCAS that triggers the seizure but the POTS. Most POTS related seizures are due to excessive vasoconstriction, which stops blood from going to the brain. This can cause syncope but if sudden and severe it can trigger a seizure. For me what has helped the most to prevent them are medications that dilate the vessels ( like calcium channel blockers ), regularly scheduled IV fluids ( helps to keep enough volume in the vessels to prevent constriction ) and a carefully balanced routine of exercise and rest. I used to get seizures and syncope several times a week, even daily, and since I had a port implanted over 2 years ago and now can have IV fluids whenever needed I have maybe 2 seizures a year - all triggered by illness or other unexpected stressors. Here is a lecture about this from last years Dysautonomia Conference: https://vimeo.com/355131309?fbclid=IwAR1HkfPxY4OlW5TH2mmfue-DanVyWuz1axXJccA3S5RcwFnoPKnfTorCofc

@Knellie as far as I know a RR of 12 is still considered normal. Anything below 12 is low. I run a RR of 12 at rest and even when in the hospital no one ever was concerned about it.

@Knellie - what is your RR?

@MTRJ75 @toomanyproblems - have any of you ever had an EMG? It measures nerve-to-muscle transmission and can detect any errors in communication between the two. Personally I would definitely seek neurological Work-Up for this symptom. ( Toomanyproblems - I certainly understand your frustration with the docs you saw before 😣)

Hello @JAG307 - welcome to the forum!!!! I have a port and get home infusions - 1 - 3 L LR a week, depending on how I feel. The LR is a lot better for me - I used to get NSS ( Normal Saline Solution ), but it only worked for a short while. LR has a lot of other electrolytes rather than just Saline, and it works as a volume-booster, not just replenisher. It seems to control my high BP a lot better and also does not send me to the bathroom so often - with saline I would pee out everything as fast as it was going in. Personally - if NSS does not work good enough for you I would ask your doc of he/she would consider LR.

@beastwiththeleast - no, personally I have never heard of those ( very powerful ) medications being used for POTS or CFS. I am wondering if they have diagnosed you with major depressive disorder instead? That is what these meds are often used for. However - antidepressants ARE on the list of medications for CFS : Quote: There is no cure for CFS; however, the following treatments may be considered to help relieve symptoms: Sleeping medications Stimulants Analgesics Antidepressants Other medications.

Thanks @Muon!

Dear @carinara - I found the following article about RAAS : https://www.healthrising.org/blog/2020/09/28/paradox-chronic-fatigue-syndrome-pots-renin-aldosterone/ Quote: "First, renin stimulates angiotensin II, which increases blood pressure and stimulates sodium absorption. Angiotensin II then stimulates the production of aldosterone – the main factor – which regulates blood pressure, plasma sodium and potassium levels and blood volume. (Aldosterone secretion can also be stimulated by potassium, adrenocorticotropic hormone (ACTH), and low sodium levels in the blood (hyponatremia).)" End Quote I know that the RAAS system can be a factor in dysautonomia. Also - Spironolactone is a powerful diuretic that will really lower you blood volume, which in turn can bring on really bad POTS symptoms. I am surprised someone would actually give that to someone with POTS! We are so very medication sensitive and no wonder that you went into such a tailspin!!! I do not know why your aldosterone is high but I think it may be a reason for some of your POTS symptoms. Have you ever tried IV fluids for the flare? Weekly IV fluids are the only thing that stabilizes me at all, despite all of the meds I take. Renin, angiotensin and aldosterone have to do with regulation of your blood volume - and we all know how that ties into POTS! IV fluids improve the volume and therefore can regulate these hormones as well. When I am hypertensive and get an infusion my BP comes down immediately - when normally it should get higher with IV fluids! So you might want to suggest that to your doctor!

@HCD77 - great news!!!! I hope they find not only your type of disorder but also the right treatment. Please let us know how it went - good Luck!!!!