Orthostatic Tachacardia

[Karen M.]

I am new to this forum. I have Addisons/Thyroid disease. I have had POTS for 11 years. I am on altenolol 30mg to help control it. I have higher HR's when I stand up, is that the same for you guys? Also how high does your HR's go, without meds, and then with meds? Do you notice different times in the month that it goes higher? IF so, what do you do about it? I have low BP already, so I can't do a lot more with beta-blockers. Do you ever go to the ER for fluids and if so does it help you? Please just post some of your problems and how you are dealing with it.....I need this help....

Thanks

Karen M.

[michiganjan]

Dear Karen,

I have had POTS for at least 25 years. Without meds, my heart rate is in the 90s sitting down. When I stand up it goes right on up to 150-160 and stays there until I sit back down.

With a small dose of a beta blocker my heart rates resting range from high 70s low 80s and standing and walking around 100-110.

I used to be able to stand longer and do more than I can now. My capacity has dimminished as I have grown older. I am now 56.

The Best to you,

Michigan Jan

[ethansmom]

Welcome to the forum! I definitely get a high HR when standing, it goes from about 70-75 sitting to 110-115 standing, that's on a good day when I have had enough fluids with Pro-Amatine and a small dose of Florinef. Without meds it can get as high as 140-150 upon standing- but despite that, I am trying to wean off my meds because they are causing more side efects than anything else. It's definitely worse during menstruation and much worse immediately after my period. I have never gone to the ER for fluids, but I do drink 3 liters per day (2 liters of water and 1 liter of gatorade) which helps more than I can say. I also add a ton of salt to everything I eat.

My biggest problem is lightheadedness, there are times when it's tough to even run into a convenience store without feeling like I need to run and lay down. I didn't have good luck with the beta blockers because they dropped my BP too much.

[Karen M.]

Thanks for posting....

Jan....what is your beta blocker and how much is your dose?

ethansmom.....what is your dose of Florinef? Does it crash your potassium? What beta blocker were you on and what dose? If you took more florinef would it raise your BP and then be able to use a beta blocker?

Are both of you disabled because of this?

Karen M.

[khudsonwv]

I am fairly new to this forum so bear with me ... my POTS is postpartum - two weeks after delivery my sitting HR was at 130 with my standing HR going as high as 250 - my BP has always been low 90/60 and with the high heart rate - would go to 50/30 and out i would go - i was unable to tolerate any meds and because they didn't know what was wrong I underwent a total of 10 ablations which sent me into 3rd degree heart block and now i have a pacemaker --- tachycardias were horrible and scary but at least now i have a diagnosis and hopefully we can beat this thing.. i just wish the dx would have come prior to the ablations - i wouldnt be 35 with a pacemaker !!!! best of luck to you

[ethansmom]

Karen-

My dose of Florinef was originally 0.1 mg daily, but I cut it down to 0.05 because I couldn't tolerate it higher- and recently cut in half again (0.025) since I am weaning off it. I tried the beta blocker with it, but it still made me feel just awful (so tired I literally couldn't function, and very weak and lethargic). As far as I know my potassium is okay- it's been tested before and the levels were fine.

I would not consider myself disabled because I take care of a toddler 24/7 and go to school...although I am not able to work without being miserable.

[Karen M.]

ethansmom

I don't think florinef would make you tired. Low potassium would, a beta blocker would, but not florinef. How are you doing now that you've been weaning off of the florinef, is your POTS ok?

khudsonwv

I am so sorry that happened to you. Now being on the pacemaker, are all your problems gone? Do you have to worry about anything now, or take any meds?

Karen M.

[khudsonwv]

Karen - i am unable to tolerate any meds including florinef, octreotide, beta blockers etc. i am extremely sensative to all chemicals - meds etc - this is due to the POTS - was not like this before. the pacemaker did not stop my problems it has actually made them much worse. it only controls my brady symptoms but i still have severe arrythmyias because my heart still wants to race but cannot due to the damage from the ablations. my bp ranges from 90/60 and down. i am unable to care for my children - cannot shower, shave my legs, cook, brushing my teeth is difficult and someone has to wash my hair.. i am having severe muscle weakness and i fall daily.. i never thought that this would go this far.. i was in optimal physical condition prior to having my daughter - i actually jogged 2 miles the day before she was born and now i cannot walk 20 ft without haivng to sit down. the doctors say that my case is now very difficult and are not sure what to do.. i will be going to a new specialist soon as my other one is at a loss for why this is progressing so quickly... i have been told that ablations are the worst thing in the world for a person with POTS but we simply did not know that is what was wrong with me ( i had never heard of it) - i was originally dx with SVT, PSVT, inappropriate sinus tach, A-fib and aflutter. All symptoms of POTS but it was too late the damage was done - i am soooo glad that i found this site.. i was beginning to think that i was alone and now i know i can find hope that this may get better!!!

[goldicedance]

So, so sorry about your POTS and the things that you are going through when you should be enjoying a better quality of life.

Questions: Have you tried Midodrine? Do you try to increase your sodium--i.e., salt foods, salt pills, V-8 juice? Where did you try Octreotide? What kinds of reactions did you get to Octreotide? How about Neurontin? How about Celexa or Zoloft?

I have been suffering with pots for 8 years...have tried numerous meds. Sometimes they work, sometimes they stop working, and sometimes they give me more problems.

Keep trying....Don't give up!

We're here for you?

[ethansmom]

Karen-

I am still having some fatigue since I've cut down the meds, but it's much better. I am getting by on 8-9 hours of sleep with the occasional afternoon nap, which is much more normal than before. I hope to see more results when I completely stop the Florinef. The only thing that's changed with the dosage decrease other than less fatigue, is that I've had more resting tachycardia- when I lay down to sleep sometimes my heart races and it's a little bothersome, but I am trying to keep fluids up. I just had bloodwork done 3 weeks ago in the prime of the flare-up I was having, and it came out fine except fot the positive EBV titer- am assuming they checked potassium levels since I specifically mentioned that, but I guess I should double check. My doctor is not the best communicator...I'm actually seeing a new doc in August so I'm just trying to get by for now

[khudsonwv]

goldicedance - i was given octreotide and midodrine at my doctor in WV. one gave me crushing headaches and attacked my kidneys ( not fun )--- the other gave me crushing headaches and made my skin crawl ( like millions of bugs) - then he tried florinef and that made things worse too so the doctor got pretty frustrated and so did i - it was quite a disappointment - as i was sure one of them would help.. but i have my fingers crossed that something will come along that this crazy body of mine can tolerate lol....

[goldicedance]

I do, too. Florinef gives me migraines that land me in the hospital for a week at a time. Midodrine makes my head itch and gives me chills. Beta blockers make me really tired.

Life can be a drag with POTS, but it beats the alternative.

Keep searching! We all root for each other!

[Karen M.]

goldicedance

Why does florinef give you headaches? What is your BP on them? That is a normal reaction to Midodrine. Beta blockers can make you tired at first, but at a low dose, should not continue too. What dose of florinef and beta blockers were you on? What does your HR do now?

Karen M.

ethansmom

What is your HR laying down and then standing? What is EBV? Are you sure all you're having is sinus tach?

Karen M.

Khudsonwv

I feel so bad for you. Have you had your adrenals checked? If it's any concellation, my POTS came on, one day, out of the blue while I was washing dishes and my HR went to 165, I too was 6 weeks pregnant. Needless to say, I terminated the pregnancy, thinking it would all get better. Here I am 11 years later and nothing ever got better. I still have it. I wonder about pregnancy bringing it out? I use to be an aerobic's teacher for years at that time, so I was in great shape too. I have since got Addisons and thyroid disease...due to auto-immune disease. So, life is complicated. But, I would take all this over a pacemaker. I have a good friend who is your age, who has one too. For a different reason. I can't believe that with all the ablations that they can't help it calm down. What is left for you? I do have you in my prayers...

Karen M.

[MightyMouse]

That itching and skin crawling feeling is normal with midodrine. Most folks get used to it after a few weeks--and it also dies down a bit. For me, I found a it a bit humorous...and at least a sign that it was "working".

As usual though, one person's miracle drug may be another's poison. Unfortunately, there is no way to know which one a drug will be for YOU without trying it first.

Nina

[Karen M.]

Khudsonwv

It is my understanding that what you descibe as what your problems were before the ablation and after are not POTS, but some other dysautonomia issues. This is because of all the abnormal beats that you had. POTS is usually sinus rythmn and you had all kinds of different rythmns. You are also having a difficult time now, controlling it. I know you see an EP doc???? What are they suggesting to you now?

Karen M.

[MightyMouse]

I have some rythym changes and I still have POTS--my cardio basically said it's nothing to worry about (for me). My rythym is frequently inverted.

Nina

[khudsonwv]

karen - the ablations did not take care of the problem and only brought on the bradycardia and 3rd degree heart block - the arrythmias - except for the svt were brought on after the first ablation - i then had nine in one marathon 8 hour session which caused the brady and heart block - i still have the arrythmias but svt is not as bad - my heart can only go to 150 now instead of 250 but it still wants to race higher which causes all kinds of weird things to happen.. syncope is still a problem and i still get really low BP episodes. however most of my falls now are because my legs are so weak. i have 2 EP specialists that i work with and they are great - they call me their "special patient" because ( ha ha ) they have never seen anything like this - it seems that everything we do or try makes it worse. But i know in my heart ( as screwed up as it is lol) that we will find the right answers. if anyone has any ideas - trust me - i would love to hear them....

[danelle]

Hi, I have POTS and I have had SVT, PAT, sinus tachy, lots of PVC's and PAC's. Small runs of PVC's and PAC's as well. I just assumed this was all part of the POTS thing. My HR gets up to 160's and higher occasionally and that is with 50 mg of atenolol but it does control the higher stuff for the most part. Is this NOT normal for POTS??

Khudsonwv-so sorry to hear your story, hang in there and keep talking with us!!

[Karen M.]

From my understand of POTS. It is a normal sinus rhytmn that is escalated upon standing. When you throw into the mix SVT, PAT..etct that is tachacardia's of a different nature. It isn't POTS. SVT and PAT can occur while sleeping and laying down. POTS is aggravated upon standing ONLY, by your hearts own natural sinus rhytmn going really fast. Now, having said that, most doc's are trained to say that if your HR goes over say 150 it is a PAT or SVT, so they have to look at the tapes very closely. They should be sinus to be POTS. Now, PAC and PVC are normal to the normal person. So, that is just a normal thing that can occur.

danelle

Does is go to 160 and higher ONLY upon standing? Does your HR go above 100 laying down? This is off or on the beta blocker.

khudsonwv

Does anyone in your family have this problem? The problem with ablations are that they can't always correct the problems and can sometimes make them worse, as it sounds in your case. Why are you so weak? I really do feel for you. I am truly sorry about your case.

mightymouse

What is inverted? What kinds of arrythmias do you have? What tests did your docs do to come to the POTS diagnosis?

Karen M.

[MightyMouse]

I have frequent inverted t-waves. Here's a brief description and picture:

http://sprojects.mmi.mcgill.ca/heart/twave.html

I had tilt-table testing and was diagnosed with POTS and NMH (aka NCS) at the Syncope Center at Columbia Presbyterian University Medical Center. I have also had mutliple ekg's and a stress-echo cardiogram, and several other echos. In addition, I was a clinical study patient at NIH and my diagnosis was confirmed there. Also, NIH did a cardiac catheterization and a PET scan. My heart has normal nerve function, is of normal size, but has very low flow pressure through the coronary sinus. I've had more blood tests than I can recall, but they include catecholemines, cortisol, rheumetology titers, yada, yada, yada.

[danelle]

Mighthy Mouse, I also have inverted T waves-have had for yrs. Do you also have SVT, PAC, etc with POTS? Now I'm wondering if something else may be going on as well as POTS but I do think that Dr Grubb told me that you can have SVT< PAC and afib with POTS but I am having major brain fog today so I maybe wrong

Karen,

Yes my HR does occasionally wake me up at night racing(150+) but it typically goes that fast upon standing or with ANY physical activity whatsoever and this is with my beta blocker. I can't imagine what is would be like without it again(Ihave been on it for 16 yrs now) but it doesn't work quite as good as it used to even with higher doses

[MightyMouse]

Every ekg I've ever had shows svt. Yes, and I'm a Dr. Grubb patient too--and he also confirmed all the prior diagnoses.

Nina

[Karen M.]

mightymouse

I have a lot of inverted T waves and was told it could be low potassium and/or just a nothing thing. That there has to be more to the picture than just that. What happened to you during the tilt? When you say a Stress Echo, what exactly is that?

I don't know Dr. Grubb? I also have to tell you that me, personally, I don't trust doctors either. I could write a book on this subject. Have you ever had your adrenals tested? You say you had cortisol tested, but I mean an actual stim test done to your adrenals? What test determined the low pressure through the coronary sinus, the cath?

Karen M.

danelle

I don't understand this doctor telling you guys that svt and pat etc...are POTS? If your HR is waking you up at night this isn't POTS. For example I am perfectly fine laying down at night. Then I need to get up in the middle of the night to go to the bathroom, my HR will automatically shoot up to 180-200? All sinus in rythmn. This is POTS. If I was having SVT or PAT these are not POTS. You are on propanolol? I forgot? It is probably posted somewhere??? I understand the higher doses and better coverage. After my tilt, the head EP doc wanted me to take 100mg of altenolol. I have Addisons disease too, and so I run low BP's, I told him he would crash my BP's. He said oh, go for it. Yea, right. So my own EP doc, who was there too, told me to just creep up my altenolol as I needed it. Try and see what 50mg does. I can't seem to get past 30mg. My pressures are already low. I also take florinef, but I have to anyways for Addisons. I am on a slightly higher dose of gluto steriods too, medrol. I think this helps the POTS too.

I have suffered a lot with POTS, and have been through much studies, many cardio doc's, and I have never heard of SVT and Pat's being POTS, this is a different kind of autonomic dysfunction or cardiac dysfunction. Maybe Dr. Grubb is saying that you have two different problems, one is POTS and another is other tachy arrythmias. P.S. PAC and PVC's are normal to most people anyways.

Karen M.

[MightyMouse]

Dr. Grubb is a specialist in dysautonmias. He's an EP cardiologist at Medical College of Ohio. You will see his name referenced many times on the main DINET set, as well as the NDRF's site (along with some other specialists, including Robertson, Low, Goldstein, etc.).

During the tilt table test, my blood pressure initially shot up, and then dropped to 50 (no diastole). Shortly after, my heart rate slowed and the doctor stopped the test as I was about to pass out. The whole thing took about 15 minutes and I was not given any medications during the exam.

I've had serum cortisol, serum catecholemines, valsalva testing, etc. If you want to read more about testing, please see the main sections of the DINET site for the standard list of tests--I've had nearly all of them, except the sweat tests, cold pressor, and holter (not needed as I'd had many other cardiac studies). http://www.dinet.org/how_is_pots_detected.htm

Michelle has hotlinked each one to a description of the tests.

Sorry not answer all your questions tonight, but I have a migraine. You can read about the studies I was in on the NIH/ NINDS website. I link to them on my personal webpage--a few of the links are now dead, however, b/c the studies are completed.

[khudsonwv]

Karen - it is my understanding from the several docs that I see - as well as description on the POTS PLACE outline - that there is a small cross section of individuals who experience POTS episodes at other times besides standing - my symptoms seem to be positional - as in with standing, sitting quickly, rolling over quickly etc. all cause high increases in heart rate and rapid drop in my BP. My normal HR now with the pacemaker is 70. Movement sends it to a max of 150 now. BP is usually 90/60 goes down to 50/30 upon standing etc.....no one else in my family has this problem and mine only arose post partum. My other arrythmias came on after the ablation so i don't feel that they are related to POTS although i cannot rule out that POTS makes them harder to deal with. As for why i am so weak i don't know - and we are working on it = one of my doctors would like to send me to another specialist who believes that POTS is actual a muscle disorder of sorts. I did not have the muscle problem prior to this.. so i truly believe it is related in some way. Seems like a little puzzle and i just kepp getting new pieces...Who knows at this point I am willing to see anyone who thinks they might have the answers...