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@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!!!!

Dear @Nin it is important to write down your BP and symptoms, even if they do not correlate. A physician needs to see what your BP is on AVERAGE and whether the symptoms appear with certain changes. Even if the symptoms do not show only when BP is high or low - this is important in order to determine which medication could help. With me I get symptoms with a BP of 120/60 and anything higher ( can get very high ) but if my BP goes 90/60 I am completely fine, only when it drops below 80 do I feel bad. Let's say your BP goes between 90/60 and 150/100 in a day, they need to know what your RANGE is ( highest and lowest ) on average and when you feel symptoms. So it is best to measure at the same times every day ( and whenever you don;t feel good ) so they get an idea what and how much meds to order.

What I have learned is that if everyone has to live like me ( homebound, cannot go out to shop or appointments and has to catch up with family and friends via facetime or zoom ) then society breaks down!!! People develop anxiety and depression, doctors are not available to see them and people have to fend for themselves ....

@cmep37 - that just makes me sooooo sick! I am sorry you had to spend money on this person. I too had my fair share of ignorant physicians before I found experienced docs, and they contributed a lot to my need to research my own illness. One doc even told me that it is impossible to feel hypertension since it is the silent killer 🤨, he said the only reason I have problems is because I take a beta blocker when not needed 😕 and ( to come back to this thread's subject ) it is impossible to pass out sitting down 🤣.

@Muon - this is what our Forum Administrator found: https://www.dinet.org/forums/topic/29054-poll-dinet-members/

Well - I would diagnose him with hyperinflated Ego, obviously all of your symptoms evolve around HIM! LOL! 🤢 When I have to sit for a long time I use the toe-tap/heel-down exercise: while sitting alternate your feet between tiptoe and heel-down, it really uses the calf muscles. This can also be done while standing at the kitchen counter ( for example ).

Hello @Viktor - this is a good question. I have HPOTS and I know that for a POTS diagnosis you need an increase of 30 BPM within the first 10 minutes of standing that is sustained, and for HPOTS your BP is supposed to go up as well. This was all the case for me. However - my sister has all of the symptoms you describe and that I share as well - HOWEVER she does not have an increase of HR upon standing. And her BP does not RELIABLY go up during TTT. She does have Hypertension though. So she has a diagnosis of autonomic dysfunction, and another time she was diagnosed with autonomic neuropathy, but the treatments are the same as for HPOTS. She responds very well to IV fluids - like me and my other sister who has HPOTS. My autonomic specialist says that there can be differences in symptoms and not everyone will fit the perfect description, yet still have dysautonomia. I am firm believer that - especially in dysautonomia - if a doctor looks at tests only and not the symptoms than he/she is very narrow-minded. Obviously you have symptoms of dysautonomia and if you don't perfectly fit the criteria for HPOTS but share all of the other symptoms then IMO it should be treated as dysautonomia. --- To answer your question: yes, I would get the tests done. TTT is different than the orthostatic Vital signs in so far that when you actively stand your muscles still help pump blood up to the heart and brain, even if ineffectively. During a TTT you are not standing, you are passively upright, meaning that your muscle pump is not activated. This will exacerbate the onset of POTS symptoms, and if nothing happens simply by standing then they give you medication to trigger the dysautonomic reaction. And to determine whether or not you have HPOTS the catecholamine levels would be very helpful. ( Although my sister had them drawn during a TTT and both were normal, but she was on all of her meds ).

I have passed out when sitting many times. It appears that once stuff hits the fan sitting is not enough to turn the ship around - I have to actually lie down. Just sitting will not necessarily stop the pooling - you are still upright. Lying down with my feet elevated helps me though.