Could I Have Pots Too??

[Aquadiva]

I haven't ever pursued a diagnosis because I thought that my issues were probably just "normal" for me, or that I would just be told that I had anxiety. But, now having a child diagnosed with POTS and learning so much, I wonder if I could be suffering unnecessarily if I were to try forms of treatment if it is indeed POTS. This is what I have experienced....I can't remember having as vivid of symptoms before my first child was born. Following having children I couldn't stand long enough to blow dry my hair, or even a hymn at church. I remember DREADING going to church because just simply standing was such a hard task. That has improved over the years quite a bit, but I still get totally exhausted just shopping for groceries that I can't even put them away when I get home. I can't run many errands at once. I get so tired I go home early and will even go back to the stores later the same day if I feel I can do it. I am tired all the time--I mean all the time. I wake up tired, but I don't sleep the best at night-I wake up many times. I have thought about mentioning that, but would get the whole lecture of lifestyle changes, etc. etc. I have stomach issues. I am nauseated a lot as well as bowel issues I have just written off as IBS. I get frequent headaches. I have a lot of what I would call "palpitations or fluttering". Again, afraid to even mention it to the dr. as it would be just written off as "anxiety". I am contemplating asking for a TTT at my dr. visit next month. I just hate to go in like a hypochondriac or "ask" for a test to be run. But, I have to ask, when any of you have had your TTT done, how long do they keep you upright? My daughter they just kept up for 10 minutes (she had obvious tachycardia after 5 minutes), but I have read that sometimes it can take up to 45 minutes for the tachycardia to show up.

Any thoughts/advice??

Thanks, you are all so wonderful. I am so glad I found this forum!! I have learned a lot by reading your posts.

[dsdmom]

Hi,

Your symptoms sure sound like they could be from dysautonomia. Does your heart race or is it just hard to stand? I ask because my heart doesn't race (it used to) but I dread all the same things you do - especially church. Standing AND singing? Too tough for me! Anyway, I have dysautonomia, but not POTS. For my TTT they only kept me up 10 minutes. They got a lot of info from other tests too...valsalvar, QSART, doppler...so make sure you ask for autonomic testing - not just a TTT. You shound't suffer when there are things you could try!

[Ernie]

Hi,

I would compare the list of symptoms that is on Dinet with yours and put the ones that match yours and bring that list to your doctor. Then I would ask your doctor for a TTT.

Some doctors do a TTT of 10 minutes others do 20 minutes and others 45 minutes. The real protocol is 45 minutes. But for the POTS diagnosis you need 10 minutes of upright standing and an increase in 30 bpm.

It is worthwhile to do the TTT so at least you know if you have the disorder. It runs in families.

[Aquadiva]

I don't notice my heart "racing" as much as a fluttering, but it could be racing I guess. It also seems like it could be skipping beats. It also kind of takes my breath away. Hard to explain exactly. One other thing I didn't mention is that I get VERY shaky. I am shaky all the time, but get really bad if I don't eat regularly and frequently, and feel sick. I have mentioned that to the dr. and my glucose has been tested and was fine. I didn't pursue it any further, but that has not gotten better. Oh, and concentration problems. Sometimes it is terrible. I thought maybe I have ADD!

[ajw4790]

Hi Aquadiva!

I am glad you found the board and have found the posts useful. When I found the board I also thought that the information from others dealing with the same kinds of things was great and very helpful. I hope you continue to find useful information here and hopefully some help for your daughter and yourself.

I have to say you do sound a fair amount like myself, and I think many of the others on the board here. Have you sought medical attention for any of these symptoms for yourself? Would the dr. that diagnosed your daughter do you think look at you as well or possibly have a referral to someone who could provide you with the appropriate tests, screenings, and possible treatment?

I agree with what the others said. Look at the known symptoms and see how much of it looks like you and then make sure to mention these things to a dr. For me what finally got me heard was saying that I tend to feel very sick and faint in the shower and other hot environments. Then everything progressed from there.

Where about do you live as far as what drs etc. are available to you?

How old is your daughter and what tests did she have? Are her symptoms reflective of your own?

I would say with the cardiac symptoms you list that seeing an EP cardiologist would be a good idea to get a Holter monitor etc. to see if any of these events can be caught, so a dr. can see what is going on.

For the low blood sugar feeling times have you tried buying an at home glucose monitor that you can check it and track it to what causes these symptoms?

Man, do I understand the ADD types of feelings and how all of this brings it out so much more!!!

I hope you can find some answers!

[yogini]

Dysautonomia does seem to run in families. Given your symptoms, it sounds like a good idea to mention this to your dr. It also might be helpful to measure your blood pressure and heart rate at home for a few days. There are all sorts of variations, but fast HR and/or low BP are usually the most common symptoms of dysautonomia.

[Aquadiva]

Thank you so much for the replies!

What is an "EP" cardiologist??

Yes, I have very good access to specialists, I just worry more that I won't have any thing that could be causing these symptoms than what could!! I would love to have a reason for feeling so crappy all the time. I have just kept it to myself for the simple reason that I fear they would think it is all in my head!

My daughter was much more severe and sudden that what I am now, but perhaps years ago, I could have said differently. Her main symptoms were severe headaches and dizziness. Mine is more of a sick, weak, fatigued feeling along with frequent headaches. I also have contributed it to being out of shape, but I wasn't back when it started. My daughter is 15 and she had all the autonomic tests done with the TTT. She was almost written off as having migraines only.

[Aquadiva]

I think I forgot the heat issues. If I get too warm, I will feel the same way. Very weak and nauseous. It even happens in the shower as I like the feeling of hot water on my skin, but it makes me sick very quickly. Hot tubs are out of the question.

[MomtoGiuliana]

It definitely sounds like POTS or some form of orthostatic intolerance and it sounds like these symptoms are affecting your ability to live a normal life. There are effective treatments?so I would pursue a diagnosis especially if your child has been diagnosed. An EP is an electrophysiologist?a type of cardiologist. Most cardiologists have never heard of POTS (it seems) and are more likely to conclude you have anxiety issues. An EP is likely to be aware of autonomic dystunction/OI/POTS and can interpret a TTT and/or your symptoms and likely develop a plan of action to improve your well-being!