futurehope

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With the Spanks, are you using the full length compression hose with the panty attached? Thanks.

There only one reply you can give in your situation....."I'm not well. Don't ask"

Oh how I wish some people who need to understand the impact of this, could read these posts! The people who need to read this thread are: people who think you just "don't try hard enough" the doctors who think you enjoy not feeling well and think it is "all in your head" people who cannot understand why you can't...... anymore? our relatives who have no clue the daily sacrifices we make to appear normal people who want to deny you disability because you are faking it Okay, off my soapbox. I realize that healthy people without a chronic illness cannot comprehend the impact. I was fantasizing for a minute that others would get it, but the truth is, if people did realize how difficult life is with this syndrome, we would get "pity" from them, which, in reality, I don't want either. So, back to pretending to be like everyone else. At least I don't get the pitiful conversations and the "oh poor you" looks. Nothing like an "oh poor you" look... It doesn't uplift me any, if you know what I mean.

Okay, POTS sounds dumb to me. How to do tell someone what is wrong with you? Do you have any alternatives to saying POTS?

Tilly, I can tell you what I know but I'm not a doctor. I had a cosyntropin stimulation test. They take a reading of your adrenal output before the test, then inject you. Then you wait a specified time, I think 30 minutes, and they retest your adrenal output. A normal result is that your adrenals react appropriately and increase their output after stimulation. Adrenals normally work by being stimulated by another hormone called ACTH which is produced by our pituitary gland. I think the stim test is to see if your adrenal response is appropriate to a simulated pituitary hormone. The salivary test does not require external stimulation. They are measuring your cortisol output throughout the day, say at 8 AM, 12 PM , 4 PM and 11 PM. To do this, they test the amount of hormone in your saliva. They expect a normal rhythm and change throughout the day within a normal range. Anyone out there, please correct me if I'm wrong. Thanks.

I'll be going on a long airplane ride in 2 1/2 weeks. I've seen some people on here use compression hose AND abdominal compression at the same time. First off, sitting with the 30-40 hg hose is uncomfortable. The binding rolls up and the hose themselves bunch and feel like they are binding. I cannot imagine using both on an airplane ride without feeling like I'm in a strait-jacket?! Any opinions?

My own opinion is it wouldn't bother me much if they called it something besides POTS. I tend to say almost anything else to describe my condition because I think "POTS" sounds dumb. If they do rename us, I hope it will be easy to say, whatever it is.

I get symptoms sometimes when I am sleeping. I'll try to explain. I feel like I have the flu, not enough blood to my head, weird, like I would suspect if my blood pressure were too low or narrow. I can't find out if this is actually the case, because I'm sleepy and am not checking my blood pressure. I also am exhausted even though I'm laying down. Now, these feelings are while in a semi-conscious, not awake, state. Then, if I actually need to get fully awake (because it's time), I'm really exhausted, don't want to move, and use all my strength of will to get moving. The interesting thing about having these symptoms is that in my mind I might think that "staying in bed" or "resting" would help these feelings, BUT, it's actually the reverse. I need to get up to alleviate them. They may not be alleviated totally. As a matter of fact, I might feel worn out all day, but staying in bed is definitely counter-productive when I feel this way. It's almost like my body cannot adjust to too much laying down, just like it can't adjust to too much of being vertical. Oh, yeah. If I keep my room really cool via an air conditioner or it happens to be winter, these feelings are more likely to be present. I find it interesting, both the feelings themselves, and how being cooler exacerbates them. Does anyone else notice something during sleep? Any ideas about this?

I was the one who said I am aware when my brain isn't working and when that happens, I could pick up the incorrect object by mistake. Interestingly enough, I have no fear whatsoever because of this "brain problem", except I know I should not be driving during it, or if I am driving, I make sure I have no passengers. I do not have a fear of doing anything so stupid that it is life threatening, no fear at all. I usually am aware of when my brain isn't working, and though I may do something stupid or goofy, I usually find out before any harm is done. I did not mean to put fear in you. You probably are aware when you are really not "with it" (a bit goofy). I have never done something so obviously harmful that I could kill myself or anybody, except when driving, like I said before. Please, don't be afraid of doing something crazy.... crazy and goofy are two different things to me. Now, that being said, I would not have a job where I had to do something potentially dangerous. As a matter of fact, I prefer not to have a job at all, as I am unreliable and unable to commit to anything including "being there" because of this condition.

Ditto what Potsgirl said. I try to avoid onions and garlic because they are hard on my stomach (and I do not like the bad breath they cause). But, on occasion, I'll eat something with some garlic, like in hummus, or in a hot dog (I really don't like to eat hot dogs because of all the garbage, I mean, nitrate, nitrites, whatever). I don't notice anything, but like I said, I prefer natural foods without additives.

Do You Ever Have A Day Of No Symptoms? No, but some days I am capable of more than on other days.

I have a similar explanation as Thankful. When I feel shaky, weird, as if I can't take another step or do anything, I attribute it to my brain not getting enough oxygen to function properly. I'll frequently say "my brain is not working". If I am feeling that way, I may "mean to pick up a pen", but I "pick up a knife". I absolutely cannot drive a car in that handicapped state. I would do something wrong. I may say the wrong words when trying to communicate. When I say,"my brain isn't working", it means "don't expect me to do anything useful. I need to rest."

I'm surprised you don't get a "surge" from taking the medication at night before bed. I mean, doesn't it interfere with your body's sleep/awake cycle? I take mine on an empty stomach as soon as I open my eyes and before breakfast.

It is really frustrating when you have more than one medical condition and you try to help one and you end up aggravating another. My opinion is, your doctors can look at your TSH numbers and determine if you need supplemental thyroid. I have determined that for me, I can't just go on "how I feel" since POTS tends to make me feel differently on different days. Hang in there. Just remember. You do need the correct dose of thyroid hormone as it affects many body processes.

Heiseygirl, I believe it "aggravates" POTS in the sense that our systems are very sensitive to any changes, including changes in the dosing of synthroid. For me, when I increase the dose, I can expect a few weeks of tachy before I adjust. It took me years to learn this about myself. Still, the alternative is worse. I know from experience. Being hypo aggravates POTS too. Add to that, mental dullness, extreme fatigue and it's difficult. I do not have a choice. Whatever effect the synthroid has, I must adjust to it. I need the hormone. Like I said in a previous post, I will now rely more on my TSH rather than on what I feel. What I feel changes daily and changes also when adjusting meds. The big questions for me now are, at what range should I keep my TSH and how frequently to test? Many on here have said below 2 or 1 - 2 is where their TSH is. One of my endos is okay with my 2.5. I will speak to my other one and get her opinion. What, exactly, are you concerned about with your thyroid issue and your POTS diagnosis?

BellaMia Be blessed today!

Interesting, for those who responded, that you keep your TSH at 2 or below. Mine is 2.5. I'll be seeing another endo of mine next week and get her opinion on where to keep the TSH. Thanks for your replies. Oh, yes. I found out (the hard way), that I should "ride out" the increased heartrate after increasing the dose to allow my body to adjust. I noticed my heartrate is decreasing as time goes on.

My mother does not have POTS and when she misses a dose of beta blockers by accident, she is really unwell. My uneducated opinion is that being on the medicine causes your body to "adjust" and then when it wears off, there's a rebound reaction. That's what usually happens to me when stopping a medicine that I've been taking regularly.

You make another good point. My opinion is that having both POTS and thyroid problems, I will make sure I'm tested more frequently than once/year. At what TSH level are you kept? Just curious.

After years of having POTS and needing thyroid replacement (because I don't have a thyroid), I've finally learned... DO NOT RELY ON FEELINGS OF RAPID HEARTRATE TO DETERMINE CORRECT SYNTHROID DOSE. I've posted on here asking you all about your "normal" resting heartrate. I've kept careful track of my thyroid test results for years to see what they were. Normal TSH for me is between 1.5 - 2.5 In the past, before acquiring my new knowledge, I would call the doctor and tell him I was feeling hyper and he would decrease my synthroid dose. I now know that the "hyper" feeling could have been from my POTS and not from too much thyroid. I had become more and more sluggish and lethargic because I was having my dose decreased because I "felt hyper". I probably have been hypo for three years. Never again. I have learned not to rely on "feeling" to determine the correct synthroid dose, especially since I have hyperadrenergic POTS. I will be using the results of my TSH test from now on, and will expect that to come out between 1.5 - 2.5 It's difficult, sometimes, to tease out the symptoms and what is causing what. Is it thyroid? Is it POTS? I now know that my feelings are not as useful because the POTS itself causes hyper feelings. End of post. Hope I can help someone else. It took me years to figure this out.

I'm happy for your negative tilt. How do you feel? How did you feel during the tilt? On a daily basis, would you say you feel like there is nothing wrong with you? Just curious.

In my opinion, there are other possibilities for the symptoms that people have. Sometimes, the other conditions do have treatment options. If we address the other issues, POTS may improve. For example, I have thyroid issues because I had my thyroid removed and I need supplementation. When I'm tritrated properly, some of the unexplained issues decrease in intensity. For that reason, I'd prefer not to list my symptoms because many of them, as far as I can tell, can be addressed by looking at them as separate from autonomic difficulties. I'm glad you are doing this survey, but I hope many POTsy's realize having POTS does NOT preclude you from having something else that may be corrected or managed. Frequently, on this forum, I see a variety of symptoms from posters, and just as frequently, the posters themselves, or their doctors attribute the symptoms to POTS. While, this is true in many case, I refrain from attributing everything to the same root cause until I've proven otherwise, because by doing so, I may be preventing myself from getting better. For an example of this, there are several posters on here that have found they do have other underlying conditions, like MAST cell activation disorder, thyroid, potassium problems, sleep apnea.....which can be treated. Anyhow, I do not mean to discourage you from creating a list of additional symptoms. I just wanted you to be aware that before I list anything, I, personally, would want to make sure that other possibilities for the cause my symptoms have been ruled out before I attribute them to POTS. That's why I prefer not to respond to your inquiry. But, thanks for your interest in trying to help us all.

I think you'll be fine. I had an EMG in my forehead and possibly arm, can't remember. I did fine. No problem. After the stuff we suffer with POTS and other things, this was relatively easy. You'll be surprised that the anticipation is worse than the actual test. Hang in there.

Thankful, I'm so happy for you. All your ideas are useful:the compression hose, abdominal hose, salt, water, cooling vest, squirt bottle, seat cane, etc. Also, some places allow rental of scooters for the day. And I frequently carry an umbrella to keep the sun's rays off me. It's all worth it, though, because it gives you a sense of participating in life. So what if you're tired afterwards. The scenes and memories are worth it.