Anyone else get this feeling in a flare?

[cmep37]

I'm seriously struggling; I really overdid it last week when the weather was hot and my parents were away (I'm usually housebound and live with my parents so normally my Mum does nearly all of the cooking and cleaning).  Anyway I was doing OK until I wasn't - you all know the story ...   Saturday evening I got really bradycardic - HR was around 42 and I was very short of breath.   Sunday morning I woke up with what I call adrenaline surges - I'm not sure if that is what they are as I don't get tachycardic or hyperventilate or have anxious thoughts although I do get very nauseous and sometimes have diarrhoea.  The only way I can describe it is like waves of pure panic washing over you every few minutes which is physically exhausting and mentally really hard to cope with.  Normally they go within a couple of hours of waking but when I'm in a flare they can last all day and this is my third day of them and I'm completely fed up.  In the past I've tried propranolol and fludrocortisone neither of which helped - it just seems to be that my ANS is in overdrive and all I can do is wait till it wears off.   My standing HR this morning was 169 and my BP 95/78 and as well as these surges I'm horribly nauseous, dizzy, my balance is very poor and I have an constant headache - I am just praying the next few days go quickly and I start to get back to "normal" soon.  

Do any of the rest of you get them?  If so have you any tips to help?  The only thing that helps me is lying on my front with a pillow pressed to my stomach - it doesn't get rid of the surges but it does make them less severe.

[Pistol]

Hello @cmep37 - yes, I have had similar symptoms in a flare, and i am very sorry you are going through this for so long now! I guess I am "lucky" - I usually faint or have a seizure when the panic gets too severe, and that somewhat breaks the circle, at least for a while. I used to have to be admitted to hospital for this, and a day of IV fluids calmed everything down. I would be in ER or in hospital every 6-8 weeks for years, until I had a port implanted and now I get IV fluids up to 3 times a week at home - if I get flares now they are mild compared to what they were, and I barely ever faint anymore. 

When I was bad like you are I could not walk or think, words were a jumble, my heart would beat out of my chest, i could not catch my breath and I too had very bad nausea and diarrhea. As soon as they hooked me up to IV fluids everything stopped, it was really weird. They always were so amazed by this - I was literally crawling in looking like I am about to die, and after 10 minutes on fluids I was sitting up, color back in my skin, talking and laughing, and I could stand!!!! 

We had tried many meds and other things to stop these flares but only IV fluids help me. They are a known treatment for flares in POTS and both my autonomic specialist as well as my PCP would prescribe them as a standing as-needed order. All I had to do was go to an infusion center ( or some urgent care centers ) and give them the prescription. After using them as a treatment only we went to weekly during flares and now I get them preventative up to 3 times a week - and I am soo much better. 

If your doctor is willing ask him to try them. With your HR and symptoms you are certainly justified to go to ER, but you may not be comfortable doing that, especially during corona. Here is an article that explains this known POTS treatment:      https://pubmed.ncbi.nlm.nih.gov/28185102/

I hope you soon will feel better!!!!

[cmep37]

Thanks for taking the time to reply @Pistol especially as I know you're not doing great yourself at the minute (I hope you are feeling a little better).  What is an autonomic seizure?  I sometimes have full body tremors when I am in a flare which can last anything from a few minutes to a couple of hours but I am fully conscious.  I must confess that I no longer go to A&E when I'm in a flare - I have had really bad experiences of doctors assuming my symptoms are all psychological and the bright lights and noise of hospitals together with lengthy waiting times to be seen means that I just wait it out at home and speak to my GP if necessary.

I would love to try IV fluids but here in the UK they are just not seen as a treatment for POTS.  I spoke to my cardiologist about them who told me that he has not seen a UK study which supports the benefits of IV fluids and so he cannot justify prescribing them given the high risks involved of infections, blood clots or sepsis from a central line or damage to veins or infections from repeated peripheral lines.   He says I should be able to hydrate myself orally without the need for IV fluids.  I do drink at least 2.5 litres of electrolytes every day but it just seems to run straight through me (I go to the loo 12-15 times a day).  

 

[Pistol]

11 minutes ago, cmep37 said:

What is an autonomic seizure? 

Well - there are several theories behind this symptom, in some cases it is just a severe form of syncope, with tremors etc caused by loss of circulation to the brain. In my case they are believed to be caused by sudden and severe constriction of the blood vessels in the brain, cutting off the blood supply.  My seizures look like regular grand mal seizures and I am unconscious during them. I gain consciousness relatively quickly afterwards b/c when the vessels release the blood rushes back in and I "wake up", like after a faint. My BP is usually high before and during these episodes, whereas it is low when I faint ( I suffer from HPOTS and NCS, which have different mechanisms ). --- The tremors you describe happen to me when I am either right before a faint or seizure or when my adrenaline is very high. 

 

21 minutes ago, cmep37 said:

He says I should be able to hydrate myself orally without the need for IV fluids. 

Nope, doesn't work necessarily. I used to drink a lot of fluids without any effect. I would pee it right out, ran right through me. Most physicians think that the IV fluids are to correct hypovolemia, or dehydration. This is not the case in POTS. The ANS can cause the body to loose the ability to properly dilate and constrict the vessels, which in turn causes the chaos we experience. IV fluids will create a steady pressure within the vessels ( think a steady stream through a hose ) and therefore eliminate the faulty signal to constrict or dilate. The fact that it also restores volume to a normal level will keep the positive effect for a while. We can drink all we want - it will not counteract the ANS dysfunction as IV fluids do. 

 

26 minutes ago, cmep37 said:

I must confess that I no longer go to A&E when I'm in a flare - I have had really bad experiences of doctors assuming my symptoms are all psychological and the bright lights and noise of hospitals together with lengthy waiting times to be seen means that I just wait it out at home and speak to my GP if necessary.

This is one of the reasons my PCP finally agreed to a port. I used to have to go to ER frequently when in a flare and despite my seizures and fainting ( even while in the ER ) they would refuse IV fluids b/c " I could drink". My PCP does not give IV fluids in his office, so he would send me to the ER. Many times they rolled their eyes when I came in, contributing my symptoms to attention seeking or female hormones. They even did a drug screen b/c they thought I was high!!!!!! My autonomic specialist would send me a prescription for weekly IV fluids for a month during flares and I would get those in an Infusion center 1 hour drive away. But when I still needed them during flares and ER would refuse he finally allowed for the port and I have not been in ER for POTS ever since. I barely ever even get seizures or faint anymore!!! 

 

34 minutes ago, cmep37 said:

I spoke to my cardiologist about them who told me that he has not seen a UK study which supports the benefits of IV fluids and so he cannot justify prescribing them given the high risks involved of infections, blood clots or sepsis from a central line or damage to veins or infections from repeated peripheral lines. 

Nonsense!!! There are no studies in Germany about this either and both of my sisters, who live there and have POTS, get IV fluids through peripheral access ( needles in the arm ). One sister gets them as needed and the other sister gets them regularly at her GP's office. They both benefit greatly from them. My one sister comes to the US to see my autonomic specialist and now does teleconference with him, her and her GP. 

It really drives me crazy when physicians are too scared to order a known treatment b/c their country does not support them. Whatever happened to treating the patient first? If there is no study in the UK but they know that it helps patients in other countries - why don't they do a study? 

I am sorry you are going through this. Have you tried compression hose? This can sometimes help. Also - along with the extra fluids it is recommended to also increase your salt - I am not sure if you are already doing this ( more salt than is in electrolyte drinks ). Is there an autonomic specialist in your country? There are several doctors treating POTS listed on our physician site .

[cmep37]

Thanks so much for your support @Pistol.   It is very interesting to hear your explanations for what is happening with my ANS - it makes a lot of sense!

 

On 8/19/2020 at 1:07 PM, Pistol said:

Is there an autonomic specialist in your country?

I live in Northern Ireland which is part of the UK but separated from the mainland by the Irish Sea. There are no autonomic specialists in my area; I have seen 3 different electrophysiologists.  The first didn't understand POTS at all; he told me my symptoms were psychosomatic and that I was just trying to avoid work!  I begged him for a TTT and he finally agreed but I refused to ever see him again.   After the results of my TTT (they stopped the test after less than 15 minutes when my HR reached 172 with no sign of stabilizing or slowing down , my BP was on the low side but had no big drops) I saw a different cardiologist privately who would be considered to be the POTS specialist for my area (he works with the charity POTSuk)  He spotted my hEDS and started me on fludrocortisone and then midodrine, and when these didn't help I tried propanolol.  None of these drugs helped me in the long term although I did have 4 good months on midodrine before I started to get hypertension. 

I couldn't afford to keep seeing this cardiologist privately so he recommended my current cardiologist on the NHS - he has a few POTS patients but none of my severity.  He started off really positive; Ivabradine was getting great results and despite me telling him I had occasional bradycardia he was convinced it would sort me out.  It didn't, it just made my bradycardia much worse and after that it felt like he gave up on me.  Everything I suggested like IV fluids or pyridostigmine (Mestinon) he refused to prescribe; all he suggested was CBT to help me cope with having a chronic illness (I'd already done a course 15 years ago and whilst it was helpful the first time there was nothing new to learn).  I went back to the private cardiologist but he agreed with the NHS cardiologist that there was nothing else I could try.

On 8/19/2020 at 1:07 PM, Pistol said:

Have you tried compression hose? This can sometimes help. Also - along with the extra fluids it is recommended to also increase your salt - I am not sure if you are already doing this ( more salt than is in electrolyte drinks ).

I do wear 30-40mgh waist high compression tights - they help a little.  I add as much salt as I can tolerate to my food but nausea is one of my main symptoms.  I vomit most days when my vagus nerve is stimulated by the rise in my heart rate and I find a lot of salt makes me even more nauseous.

Honestly, up until the start of this year I was coping.  I had a routine that when I stuck to it meant I had relatively few flares and although I was largely housebound I could have the occasional couple of hours out every month without triggering a major relapse.  Since I started to get bradycardia every evening and at night my energy levels have declined sharply and I am able to do a lot less.   Last year when my parents were away I managed OK and even went out for lunch one day whilst they were away without triggering a flare.  This year I did a lot less and am still in the middle of this flare (I still haven't managed to dress myself although I am forcing myself out of bed.)  

I am waiting on the results of my Holter monitor which I had done a couple of weeks ago before trying to get an urgent appointment with the NHS cardiologist (I spoke to his secretary who advised me to get the Holter first as it would give my case more weight).  I do think the bradycardia is probably just coming from dysautonomia though and given my cardiologist's past behaviour I am concerned he will just tell me it's something else I have to learn to live with.....

There are autonomic specialists in England and I'm not sure whether I'm now at a point where I should be considering going to see them.  It would be a big decision for me as I'd have to fly there and stay overnight and I'm not sure if I could manage that.