Pistol

Dear @Sig - I am sorry about this terrible experience. I too had a similar effect when I had to stop my Beta blocker because a cardiologist ( not mine ) told me to stop all meds because there was nothing wrong with me and I did not need them. So I stopped Metoprolol for 5 days and became terribly ill, with symptoms similar to what you are experiencing. Then I saw my cardiologist and he saw with his own eyes what happened and got very angry at the cardiologist and I restarted the Metoprolol and after about 3 days I was back to "normal". BB's have to be weaned off slowly and carefully and what you are going through is a typical reaction to sudden withdrawal. Are you not back on new pills? Once you start back with a fresh supply you should see improvement. You might even have to increase the dose or switch to a different BB ( check with your cardiologist ) I wish you well and that you feel better soon.

@MeganMN - when I first started with POTS and had to start a beta blocker I was the same. I asked my PCP how long I would have to take it and he said "most likely for ever". I did not believe him because I had NEVER taken ANY meds before and did noth think I would need them. In my mind this whole POTS thing ( we did not know about POTS at that time, I was diagnosed with NCS back then ) was only a temporary thing and of course I would be better - and soon! Well - 9 years later, 12 meds daily and fully disabled I could not function without any of them. I love my meds now because they make me better. I wish you will come to LOVE your propranolol too, because that means it helps!!!!

@SweDys - what rings a bell with the feet symptoms in addition to POTS problems is Small Fibre Neuropathy. Have you ever researched this or brought it up to your Doctor? It absolutely can cause your particular symptoms.

@MeganMN - for most of us the meds - especially beta blockers - are needed all of the time. In my case I will need my meds for ever. I take my meds daily but the beta blocker I can take an extra half dose if my HR/BP go up, like in a flare. I have found that I many of us we benefit from taking meds daily to help the body to maintain some sort of balance. This often minimizes the up's and down's of POTS. However - when in a flare we may need to take an xtra dose in addition to rest. So to answer your question: if you feel better on the Propanolol then why would you want to taper down? If you have side effects then you should taper back off if your cardiologist suggested that but if it helps then why would you? --- I wish you greta improvement on the Propanolol, it helps many.

How are your SYMPTOMS? Do you FEEL better since starting the Florinef? Your numbers do look better although I would not want the BP to be any higher. I myself never took this med b/c I have high BP rather than low but regarding your question about improvement - over the years I have tried several meds for POTS and the ones that worked always were started on the lowest dose. I f they did not affect me negatively then we always increased them slowly until they showed the desired effect. But it looks like your BP is in a good range but the HR is still up when standing. Do you take a beta blocker in addition to the Florinef?

I agree with wintersown - get it checked. It may very well just be hemorrhoids but needs to be examined by MD for proper diagnosis.

I am happy for you, @Caty. I have heard from others with POTS and MCAS that the treating of MCAS has greatly inproved the POTS. I wish for you that this is lasting!!!!

That is an excellent idea. I used to have a running list of symptoms and concerns that I would take to my doctors, then I would go down the list and knew that all was addressed. And I would keep the lists so I could also go over it with my POTS specialist when I saw him. There are so many symptoms with dysautonomia that there is no way to remember them all.

I know - I also felt like an old lady! I used to say that I was a sports car all of my life and now I am a 1966 rusty old pickup truck!!! --- You sound like you are not well controlled with meds. I also tried Mestinon, it did nothing. I also tried midodrine, clonidine, some Parkinson med ( don't remember the name ) … none of them worked for me. But we have to keep trying until we hit the jack pot!!! --- In addition to meds what always has helped me ( but is very frustrating ) is to listen to my body and do what we can when we can. If I feel up to it I do a chore but once it gets too much I stop and rest. That means it takes 30 minutes and 6 tries to mop my kitchen floor but if I push myself and do it all at once then I have to spend the rest of the day in bed. It also means that I can never trust in plans - like yesterday I was supposed to do some grocery shopping but could not due to my POTS, so I had to stay home and rest. This happens with school activities, dance recitals of my daughter, sport events, church … I never know when I can make it. But it beats pushing through and then having to go into hospital or be on bedrest fo a few days and then take forever to recondition … So yes - I get you!

I saw an allergist/ ENT to get checked for MCAS ( I was negative ). It's a blood test and urine sample. Best to ask an allergist as @StayAtHomeMom suggested. A cardiologist would not have ANY IDEA what you are talking about ( sadly ).

@MeganMN - I myself may flush here and there but never a big issue. I do know though that flushing and POTS symptoms can be related to MCAS ( mast cell activation syndrome ). Best to check with your doctor. I saw an allergist to be tested for this, just so it could be ruled out. It's blood test and urine sample.

@MeganMN - 9 years ago I was a healthy person, working Mom, RN. September of 2009 I started feeling like something was off and started feeling faint. In November of that year I ended up in ER for chest pain and tachycardia. They put a 24-hour heart monitor on. The next day at work ( cardiology ) I felt faint, BP 160/110, HR 150. I passed out, admitted to hospital ( same unit I was working on ). Next day stress test - failed due to fainting and tachycardia. My 24 hour heart monitor showed tachycardia 130-160 for 3 HOURS before fainting. So - my PCP sent me to cardiologist, had TTT ( showed neuro-cardiogenic syncope ) and several different cardiologists with varying degrees of ignorance and incompetency made my life miserable. The only good thing in that time was my PCP who had witnessed many of my episodes and needed no convincing that my symptoms were real. Then came a year of regularly passing out at work/ stores/ home etc … and then the fainting turned into seizures ( autonomic seizures, not epileptic, proven during an episode caught while hooked up to EEG ). I did all of my research and figured out that most likely I had hyperadrenergic POTS and asked to be referred to autonomic specialist. One year later I had my diagnosis and was in the competent hands of my specialist. --- So - that is my story. Today I am disabled but have not had ANY episodes since starting weekly infusions at home. I am on many meds and still am severely limited in my abilities but my quality of life has greatly improved due to the IV fluids. --- Due to my research in the early days and the wonderful PCP that stood by my side I was able to get diagnosis in just 2 years. And because of my genius and patient specialist I eventually found the right meds to be able to function at all and stop the episodes.

@Derek1987 - unfortunately I understand your predicament b/c I went through the same thing. Yes - autonomic specialist usually do not decide if you work or not - that IS the job of a PCP. However - they can recommend to your PCP whether they think you can or cannot work. The actual decision lies with the PCP. Since your PCP already said she would do whatever is needed - she should document it in your chart and give you a written note for your employer that you cannot work until … or ( this is what my PCP did ) you will be unable to work indefinitely. That way there is no date specified and it is implied that it will be possibly a long time. --- Regarding FMLA: have you used up your entire 12 weeks yet? In my case once I used up my FMLA my employer gave me an additional 2 months of personal leave so I could keep my health insurance until I found another insurance ( in my case Medicaid ). Once you use up all of your FMLA your employer does not have to give you your job back. And - if that happens - DO NOT apply for unemployment. That is bad for applying for SSDI. --- Have you considered applying for welfare if you loose your job and have no income from short-term disability? It is so difficult when you go deep into debt due to disability. And I agree with what @StayAtHomeMom said - keep really good track of all your appointments and records, this will all come into play when you run out of FMLA. Although SSDI will get all of your records from the doctors you see anyway. --- PM me if you need help with the job situation and disability insurance - I went through all of that and it was hard, so I know what it is like. Stay strong, keep your head up and know that this not-knowing-what-happens-stage is the worst - but it will end. And keep your faith!!!!

@kafie - regarding the turmeric: use a good quality supplement that is combined with black pepper, this increases the level of Turmeric in the blood. it REALLY works, even my PCP ( who does not typically recognize herbal supplements ) recommends this to his patients since there are many studies done that prove it to be an effective anti-inflammatory. You had mentioned psoriatric arthritis ( spell? ) in one of your other posts. Does a dry, scaly, flaky spot on the nose count? I have this off and on on my nose or cheek. -- I am a firm believer that diet is a way to combat disease, so going off dairy is a good idea. My mother was very ill with POTS symptoms and she went on the elimination diet, went off most foods and then slowly introduced them one by one back into her diet. She found out that certain foods ( like chicken and vanilla ) caused her problems. So then she got checked for food allergies and these foods showed up as an allergy!!!! Now she does not eat them any longer and feels better. My M-I-L has sjorgren ( auto-immune ) and also found certain foods trigger her symptoms. ---- Knowledge IS power as you stated in your post. When I first got sick and no one knew what was going on I researched my symptoms and told my doctor that I had hyperadrenergic POTS before seeing a specialist - and I was right! Without doing my homework I would not have known to see an autonomic specialist. We have to be in charge of our own health - so do not listen to those who poo-poo our efforts. Most likely they are too healthy to worry, but we are not. Best wishes!!!!

Hello @kafie - I am happy for the progress you made with getting to the cause of your symptoms. One thing to consider: when your body is fighting chronic inflammation ( in your case RA, IBD etx ) it is constantly stressed and therefore will make POTS symtpoms worse. You also have auto-immune issues, so that does too. I'm in the same boat - I have arthritis in my spine and other joints as well as IC ( chronic bladder inflammation ) and GI issues including IBS. My ESR is always elevated due to the body trying to fight all the inflammation and it wears us down. So if you treat the inflammation then the POTS should get better as well. In my case I always feel much better when the inflammatory symptoms are not as bad and will have a lot of arthritic etc symptoms when I am in a flare. --- Also: I am not able to take NSAIDS si I take a strong Turmeric supplement ( a recognized and proven anti-inflammatory ) and it works wonders for me. I am not sure if it is strong enough for RA pain but maybe worth a try? --- Merry Christmas to you as well and I wish you a HEALTHY 2019!!!!

In my case I found it by researching my symptoms, my PCP referred me, my insurance did cover it, I was very disappointed in the treatment ( seen by a student doctor who conducted the interview and followed by a brief exam by MD ), had autonomic study done and was told all was well, was instructed to take salt tablets and increase fluids. No mentioning about why I was having tachycardia, hypertension, fatigue, syncope etc. Follow up in 2 months ( 9 hours each way ) was told I am fine despite continuing syncopal episodes. It was absolutely a waste of time ( this was a major renowned autonomic center ). Only after seeing another autonomic specialist who right away ordered catecholamine testing and discovered and confirmed hyperadrenergic POTS was I in good hands. -- This is my personal experience - many others have good stories to tell. Best of luck!!!

I agree with @StayAtHomeMom - most physician practices do not know how to do orthostatic Vital signs in a proper way ( it takes about 20 minutes to do it correctly ). Look up the instructions for the correct way on thedysautonomiaproject.org . And yes - symptoms will vary. You might even be able to enjoy remission for several years. Most people do get ups-and-downs on an ongoing basis.

@MeganMN - this happened to me as well. Maybe cut down the dosage until your HR goes too fats again and then go back up (if you doc agrees). With dysautonomia it is all about creating balance - and that is not a once-and-for-all thing. The meds have to start at the very lowest dose and then go up as needed - most docs do not get that. Best of luck for you!!!!

I have had low-grade temps and joint pains coinciding with my hyperPOTS flares. Several auto-immune studies have all come back negative, except for slightly elevated ESR ( Sedrate ). Even now that my POTS seems to be controlled I still have joint pains and swelling - no longer run temps, tough. I am not sure if this is related but I wanted to let you know.

I have GERD and - thankfully - do not suffer from these night-time episodes that you describe. But my F-I-L has those EXACT symptoms. He chokes and coughs like that even in the daytime if he eats or drinks a trigger-food. Red Wine/ spicy foods/ herb tea etc … they will all send him into a terrible coughing fit. I also have a friend who was treated for asthma for her coughing and it ended up being GERD. Proper treatment of her heartburn resolved the coughing and gagging spells.

I second what @Derek1987 said: do not EVER feel like you have to drink ( or anything else, for that matter ) for other people. No matter who they are. If it makes you feel bad then DO NOT DO IT. Explain that you have a medical condition that makes you feel bad when you consume. That's it.

@MeganMN - I have NCS ( same as VVS ) and hyperPOTS. The NCS diagnosis came first. I had several monitored syncopal episodes with my HR and BP being extremely high. My first TTT I passed out after a rise followed by sudden drop in HR. They started me on Metoprolol for this and it also initially dropped my BP and HR but this was only a temporary effect. Due to my high BP I was never a candidate for florinef but did briefly take midodrine without results. Yes - in VVS the BP usually drops, causing the syncope. I also get a prodrome ( called presyncope ) before passing out from VVS, however I also pass out and take seizures when my BP suddenly goes up ( that is the hyperPOTS part ). I also can tell before the episode with this but the symptoms are different. --- Beta blockers often cause bradycardia and low BP ( that is the desired effect ) and it may not be the right med for you. NCS, POTS and orthostatic hypotension are all dysautonomias with different mechanisms and therefore need different meds, there is no one-for-all. Just keep trying what your doc recommends until you find the right combo - we all respond differently and therefore need a lot of trial-and-error. Be brave and hang in there!!!

Hi - a drop in BP accompanied by a rise in HR after 30 seconds is not a abnormal reaction. In POTS they usually are looking for a SUSTAINED increase in HR WITHOUT a drop in BP. What symptoms are you having? If you are symptomatic with an increase in HR without drop in BP within 10 minutes of standing then you might have POTS and should be evaluated by a cardiologist or autonomic specialist AND have a Tilt Table Test to confirm diagnosis.

I am sooo sorry! What a terrible disappointment! I understand that emergencies occur on both sides ( doctors as well as patients ) but this is truly horrific. Just hang in there ( not like you have a choice ) and try again in January. In the meantime try to be well ( both of you ) as best you can.

Have you seen a hematologist? They can often times discover any clotting disorders.