Angelika_23

I use Zyrtec daily and have no problems. I cannot take Allegra, that causes me to be tachy. I cannot take anything that has a decongestant in it (as I imagine most of us can't.)

Two of my children can't take anything at all, they have bad reactions to antihistamines. Odd.

I am on metoprolol, an even smaller dose than you, and when I come off of it "cold turkey" I crash hard. I would advise you to titer it down, not to simply stop taking it. For "normal people" that is a small dose. If you are like me and are sensitive to medications, your small dose functions like a regular adult dose would.

I get terrible rebound effects the first day off metoprolol. Stay laying down, and don't try to go shopping or anything. (I learned that the hard way...)

Good luck,

Angelika

Thanks Firewatcher! You "dumbed it down" for me beautifully!

Hello,

Today I had a person ask me if I had ever been tested for SIADH. They asked because they have a friend with POTS and they have this SIADH condition in addition to POTS. Does anyone know anything about it?

I know I have low blood volume and I have trouble holding on to my salt. At times, my K (Potassium) is very low, and at other times is normal. I have no idea what that is about. My body can be so annoying.

I am confused by the Antiduretic wording... Wouldn't that indicate you have too much water?

Someone please educate me

Angelika

I did not have a drop in BP, and that is not necessary for a diagnosis of POTS. The HR increase is what got my diagnosis. My tests were done at Cleveland Clinic. Dr. Grubb concurred with the results.

I don't think the TTT explanation from mwise is totally correct.

I have had several TTT's, and I have never fainted during any of them. However, I have had the dramatic increase in HR and therefore I was diagnosed with POTS; You don't have to faint on the TTT to be diagnosed with POTS.

Angela

I get the shakes/tremors, whatever you want to call it. I find if I take some Klonipin it helps. Mine mostly happen in the middle of the night, or when I get too hot, or when I've had an "episode" where I've ended up on the floor. I think it is probably adrenaline kicking in at inappropriate times, at least for me.

Sorry, it stinks, but I hope you get some answers and learn to deal with these effectively.

Angela

I seem to have picked up a stomach bug from somewhere. It started Friday night and it is still with me. Every time I drink or eat something it feels like I have been punched in the stomach. I am so afraid I am going to dehydrate because it hurts to even drink water. And then I am running back and forth to the bathroom.

Does anyone have any suggestions? I really am trying to avoid a major POTS attack.

Thank you,

Angela

Hi Lotusflower,

I had gradual onset after viral meningitis. It took almost 7 years to hit full force and stay. Before that, the symptoms would wax and wane.

Angela

Hi,

I used to feel like this all the time before I was put on my beta blocker. I too spent lots of time in the ER. Very scary feeling.

I still get it sometimes, but it is usually when I am already tired and need to rest. I know now that when I start feeling like that it is best not to "push through it". I usually just go to bed.

Best of luck,

Angela

Dani,

I can get adrenaline surges at any time. My worst ones have been while I've been asleep, and I wake up and my body is shivering in waves and my heart is racing. While those are happening, it is impossible to not be anxious! I find that Klonopin helps keep these in check. Well, any of the surges really.

So, in short I guess, I think the surges cause anxiety of some degree,(how could they not?) not the other way around. But I'm not a doctor, so that is just my opinion.

I hope this helps,

Angela

Hi,

I have hyper-POTS and for several years I was on Toprol XL (Beta Blocker) and it helped. I have since moved to Lopresor, which is essentially the same but not long acting. I also take Klonopin for the adrenaline issues. I had terrible reactions to any of the SSRI, etc classes of drugs.

I hope they figure out what is most helpful to you!

Angela

Hello,

I was on 12.5 mg Toprol XL and it did help. I did not have any bad side effects from it. I only took Toprol once a day - when my Dr upped it to twice a day I started having a low heart rate at night, so we discontinued the second dose. Since then, I have been changed to Lopresor so I have as little medicine as possible in my system at night while I sleep.

I hope Toprol helps you!

Good Luck,

Angela

I had an atypical reaction to skin testing. I am allergic to timothy grass (??) and I had large welts on my arm. Over the course of the evening, the welt got bigger and bigger. I was awakened the next morning with tachycardia and the welt on my arm was then the size of an orange. I felt like crap for two days, but after taking my Zyrtec the lump started to slowly come down. My allergist cannot tell me why this happened.

Since I am odd, and weird things happen to me this is probably an isolated incident.

I am currently on Metoprolol ER Succinate, which is the extended release. The Dr. said even though it was an extended release, it wasn't lasting long enough which is why I was starting to have problems. So he put me on another tiny dose at night, which made my days better, but it had a bad effect on my heart at night. So the extra dose at night was taken away, and I am fainting again on a regular basis.

I know that Metoprolol comes in a tartrate form, which is short acting. I wonder if it would be better to take that several times a day, than the succinate once a day because it obviously isn't working for me so well. I will put in a call to the Dr's office.

Is anyone well versed in these two medications? Are there side effects that differ from one to the other?

Hi All,

Back in June, I saw Dr. Jaeger at Cleveland Clinic. I discussed with him the difficulties I was having in cardiac rehab, and how I was spending more time on the floor there than actually exercising. He recommended I take an additional half of a half of a Toprol XL in the evening. (I usually take a half in the morning and that is it.) So he put me on a monitor and I added the extra Toprol. I was very nervous about it, I was worried my heart rate would get too low while I was sleeping.

So, I started doing better at rehab, actually working up a sweat without fainting, and I seemed to have a little more stamina. I got very excited, thinking I was on my way to feeling better, maybe even a cure!

Those hopes were dashed when Dr. Jaeger's nurse called and told me that my holter was showing that while I was asleep, my heart was going into a bad rhythm and I was to stop the extra dose of Toprol immediately. I was floored. I tried to find a way to work around it, but I have to wait until September when I go back to talk to Dr. Jaeger about what else we can do.

I cried about two hours today. I thought "normalcy" was in sight. I thought I might get my old life back soon. I had plans.

Thanks for listening.

Angela

I see Dr. Jaeger at Cleveland, as well as Dr. Shields. Dr. Jaeger is in cardiology and Dr. Shields is in neurology. They are both dysautonomia doctors. Dr. Shields' office is much better about getting back to me in a timely manner, but Dr. Jaeger's office did get back with me. I have a friend who sees Dr. Fouad and refuses to go back anymore because her office never returns calls and can't remember who he is.

Dr. Grubb is great, but he doesn't seem to do any testing; I had to get all mine done at Cleveland. All in all, I'd have to say that Cleveland has done the most for me at this point. That could change in the future, but for now it is what it is.

I wish you much luck getting your daughter some answers.

Angela

I think I set some sort of record today. I was on a recumbent bike for less than two minutes, working slowly at the lowest setting. I still managed to get my heart rate over 160 and hit the carpet.

I don't know if the heat is affecting me, although the rehab center is air conditioned.

This "floor time" is getting real annoying.

I go see Dr. Jaeger at Cleveland in a few weeks. He'll probably put a holter on me for a couple weeks. I wish my body would just suck it up and let me exercise!

Sorry, rant over.

Angela

Angelika,

I was at Cleveland Clinic too and I didn't have the blood volume test because of my iodine allergy. But my summary says that I have hyperkinetic circulation as well. Can you tell me what that means exactly? I haven't seen my EP since the test. Is it the same as hyperadrenergic?

I believe that just means "fast".

No fainting today at rehab, and had less of the "lurching" episodes. HR did stay around 114 even seated, got just above 130 a couple times while I was sitting at a recumbent bike thingy. The different thing today was I had and still have some chest pain unless I am laying down. I am not sure what that is, but I wish it would go away.

Angela

I have been confirmed to have low blood volume by Cleveland Clinic. They say I have 10% less blood volume than the "normal" person. I have hyperkinetic circulation as well.

Angela

Nowwhat,

I am currently on a small dose of Toprol XL, and like you, some days I am "normal" and some days I am not. I can't figure out why. My holters have always come back normal but fast.

The other odd thing I forgot is that the nurse noticed that whenever I am having my "spells" my skin turns red. My face, my arms. Isn't that just weird?

Thanks for the good wishes!

Angela

Okay,

No floor time today! I did have several episodes of tachy, but was able to deal with it better. I did notice, that right before I get really tachy my heart - lurches - or something like that. Very hard to explain, but it does that lurching feeling, then my HR shoots way up very quickly. It does it at some of the oddest times. I don't understand it. Is it possibly my body's way of getting used to exercise again? Maybe adrenaline?

Angela

Didn't have so much fun at rehab today. My HR was higher than it was on Monday, and tended to jump quickly.

I was on a recumbent bike, and doing fine, in the 90's, and when I stopped I got dizzy and my HR went up. The nurses were impressed that my HR went from 90 to 150 in less than 20 seconds. So I ended up on the floor.

I guess this is going to be one of those things that wax and wane. But darn I am so frustrated! WHY did it jump up like that AFTER I was done exercising? Isn't that odd?

Angela

With all this exercise talk lately I have been thinking I should give it a try, but I am in such bad condition there is no way I could go to a regular gym. I was wondering if cardiac rehab would be an option. It's so great to hear that your insurance approved this for you and to have seen progress in only ONE day?? wonderful!

Please do not think I made that much progress in one day; it is just that I was having a bad day on Friday and a decent day on Monday. Wednesday could be that I will be on the floor again. I was not trying to imply at all that I was already making progress, just trying to figure out what makes a good day vs. a bad one.

I have a membership to the YMCA locally, but I have fainted on them several times so they don't like me to come in there anymore. I feel "safer" going to cardio/pulmonary rehab. They don't yell and try to call 911 when I collapse. They know what to do and do it quickly and efficiently. No drama.