turtlefairy5

Hi Yogini, that is a very good point. Ithink when someone asks me if I exercise next time I will start with that. "It is a neurological disorder". And yes my ups and downs make no sense whatsoever.When I was always being told that it was anxiety I would look for "things" that were causing me to be anxious.. One morning I decided it was the smell of my husbands soap! yep...makes no sense. Thanks.

You may already know about this, but tere might be something to the thing with your husband's soap if you have the Multiple Chemical Sensitivites issue, or whatever it's called.

Amber

Thanks!

Amber

Well, I'm not glad that others are experiencing the same thing, but relieved that others can relate and empathize.

I definitly get POTSy at live concerts, and sometimes just playing upbeat music (hi, *wink* *wink*, Justin Timberlake) in my car can make me feel sort of...amped. While we're at it, just driving in my car can make my heart rate go up and stay up. Every now and then I notice that I'm gripping the wheel like a vice. I guess driving makes me anxious?? I hadn't realized it before.

Movies at the theater, concerts, laughing, intense conversations...essentially, the things of an enjoyable life, all give me these little adrenaline surges and make me sick. Where's the smiley for pulling your hair out?

Not being able to go out with friends, or at least go out and stay very long, or sometimes go to the movies, or concerts, being in crowds, etc., not being able to work and be financially independent, all contributed to the ruin of a relationship that was very important to me.

I'm tired of losing things to POTS.

Amber

can someone please give me a quick explanation - in two-year-old level terms - of oxidative stress? I looked it up on Wiki, but I couldn't understand it - too much medical jargon.

Thanks,

Amber

This is an "anyone else?" check-in slash rant.

Sometimes I feel very happy, joyful, sarcastic (in a good way), joke-cracking.....just "up." (Could be some mania/anxiety, but whatever, you never know with me.)

Unfortunately, I find if I laugh or am animated in any way, a sudden fatigue and sick feeling will overtake me and I go very suddenly from happy and lively to very fatigued, sick, awful. I mean, this can happen in a second. It's very confusing to people, frustrating for me, so I just try to "act" my way through it, trying to keep up the same energy level despite how I feel. It's confusing to people to be joking and animated and then all of a sudden just "ugh, I'm sick" and curl up in a ball or put my head down and get a very serious, pained look on my face.

I guess I'm realizing that being happy, laughing, being animated, though it is a "good" or beneficial energy emotionally, is still energy that I am expended, thus a strain on POTS, bringing on my symptoms. Has anyone else experienced this?

It is frustrating because being happy, laughing, animated is a large part of personality that all my friends say they enjoy most. I'm the "funny" one in my group of old college buddies, and even when I make new friends, I quickly become recognized as the sarcastic, tip-of-the-tongue witty comment girl, the funny person that makes everyone, well, like and enjoy me, though yes there are other admirable aspects to my personality. A friend once said that one of my best qualities is to take something that I am excited about and, because I put so much excited energy behind it, make everyone else excited about it.

I have fluctuations in my mood due to my bipolar disorder, but when I'm not depressed, I like to be happy - I have Bipolar II disorder, which means that I experience more extended depressions with a more anxious than euphoric mania. But recently I feel like I can't be excited or animated because it brings on in full, sudden force my POTS symptoms. Last night at a meeting I was considerably more - what? calm, spoke in a deeper, lower voice...acted more like I would act if I were depressed (which inherently means low-energy)...I expended much less energy thus didn't get the sudden POTS symptoms.

It seems like a very, very unfair trade off, to have to give up my liveliness, or be less energetic less often, in order not to aggravate my POTS.

POTS is being a party pooper.

Amber

From what I've heard, many POTS people are more sensitive to many medications and either cannot tolerate any given medication or can only tolerated them at smaller doses than average. You might ask if you could try your medications at a very small dose? But I understand that, after having a horrid reaction, you wouldn't want to go there again at all.

I don't have any advice other than to empathize that this is a very difficult condition to manage, there are so many factors to it making it very complicated, but one important part is to try to be optimistic and whatever you do, don't beat yourself up or be down on yourself at all for the problems that come up. It can be very frustrating to be restricted by a chronic illness - be kind to yourself.

I see this just out of my personal experience of being frustrated with myself for my limitations.

Amber

I saw something kinda like this while trying to find info on normal resting heart rate.

Mine can be anywhere from low 60's to 100's. Lately, when I check my heartrate sitting down, it seems to go back and forth. I don't know how much anxiety has to do with it in my case, though.

Amber

I'm primarily a lip gloss kinda girl, but I do like Bonne Bell's bubble gum flavored chaptstick.

Thanks again everyone for the support!

Amber

Hi, thanks again guys.

The caregiver support group could be beneficial if I could convince her to go.

You're right, I know I've got more going on than peeps on an online support forum can fix, but I appreciate all your concern and suggestions!

I've been pulling out my hair over the issues my mom has, the issues we have with each other, for years now. When I was in high school I went to live with my youth pastor's family because of it, had to switch schools and everything. It's just gotten more difficult with POTS now, as everything does, as you all know.

Thanks again for the advice and help!

Amber

Oh, and by the way, I have asked my mom what I could do, or how we could compromise, but at that point she just gets angry and gives the silent treatment, storms out of the room, or makes some unhelpful comment such as "I don't care what you do."

Hi again, thanks for the responses!

To answer the questions,

I will be financially dependent on my mom, but my mom isn't working either. She also took out her retirement (she's in her early 50's), and when that runs out, I don't know what we are going to do, unless...

I did apply for SSDI, was denied, contacted a lawyer and applied for an appeal. Lawyer was not very encouraging, I wondered if he just took the case to hopefully get money out of it either because I get awarded, or I don't get awarded or give up and try to work before then thus appeal gets cancelled and he demands for me to pay for time he spent on the case - he didn't seem enthusiastically convinced that I could get SSDI, and he said that it could take up to 2 years just to get a hearing - money will most likely run out before then. Plus, I don't know that my cardiologist will be able to testify to what extent my condition is disabling - he seems to be pretty nonchalant about it. His nurse always asks me about how I'm feeling, and I tell her that I'm unable to work or even complete normal activities, but, I don't know if the doctor realizes how bad it is (therapist tells me that I need to make him aware).

So yes, I do have a therapist, and actually mom and I have tried to go together before to work on our issues, but the therapist is primarily my therapist, and mom knows that I've shared with her issues concerning our (me and my mom's) very rocky relationship, so many times she doesn't trust my therapist to be objective. She'll ask me to present things to my therapist that we argue about, but then when I tell her what my therapist had to say, she accuses her of being biased as my therapist. Essentially, she doesn't really trust the therapist. I couldn't afford to get a second therapist that we could see together, my money is running out and I need it to pay for health insurance or else things will really be bad, and my mom will not use any of her money to do therapy.

I do live with my mom, by the way.

Plus, and this is just a whole other barrel of worms, but even when I do try to do things on my own, I'm limited in that not just because of my condition, but also because of my mom's problem with OCD. She doesn't want me to touch things or lay certain things on certain places on the counter - she doesn't like for me to do things for myself because I don't do it her OCD-way. For example, the refrigerator is full with empty bottles and such, so after I made dinner, I couldn't find a place in the fridge to put the leftovers. She won't let me clean out the refrigerator - she's afraid I'll throw something away that she doesn't want me to throw away. If I even tried, she would want to stand by and point out things she wanted to keep. Momma wouldn't let me try to make a place in the fridge - she had to do it herself because of her OCD, yet I could tell by the way she acted that she resented having to do it. So then I felt like I was hurting instead of helping just by making my own dinner, creating work for her to do by having to find a place to put the leftovers in the refrigerator! Before I could cook tonight, she had to clean out the food that she keeps in the oven. Last night when I went to get groceries, she had to be the one to put them up because of her OCD - again, in a crowded pantry, she didn't trust me to find places to put the food. Ultimately, she stacked a lot of it on the counter, this it is even more difficult to prepare food. Good grief. The pantry is crowded, the counters are crowded, the oven has bread and bagels, etc. in it, but momma wouldn't let me try to reduce in anyway - part of the problem is that we don't have cabinet space because she hoards dishes (we have something like 25 coffee mugs). We have a lot of stuff we don't use because hoarding is part of momma's OCD.

Even if we had the money, there's no way my mom would allow someone in the apartment because of her OCD and the resulting state that the apartment is in - noone but she and I have been in this apartment since we've lived here (6 years).

I'm in a pickle. and completely off-topic.

Sorry to go into a full-fledged rant.

I find that I'm dealing with a whole lot more than a physical illness - I have to deal with my mom's health, physical and mental, not to mention my own pretty fragile mental health (I'm a "beeper" - bipolar).

Amber

edited to add: Though she's tried medication before, my mom refuses to get help for her depression/OCD at this time due, in part, to bad experience with last public mental health psychiatrist and, again, she doesn't have health insurance to seek a private psychiatrist. Again, pickle.

For the past few months, I have been relying on my mom for basic care such as fixing and/or fetching my meals, going to the grocery store, etc., enabling me to have the energy, most of the time, to do other things that are important for me such as go to my psychiatrist and therapist appts., my CODA meetings, teach my weekly violin lessons (the only way I am able to pay my health insurance), etc.

Recently though, my mom has gotten really really frustrated, resentful, angry and told me that she has exhausted herself caring for me to the point that she can't do the things she wants to do, like attend church. For background information, my mom hasn't been in good health either; hasn't worked in several years, ever since she was diagnosed with breast cancer, though she is in remission now and has been for several years. She suffers from depression, insomnia, and often says she doesn't feel good. She doesn't have health insurance and doesn't see a doctor. She doesn't get any nutrition either - all she eats are sweets and all she drinks is coffee or wine mixed with 7-up.

Clearly, not a good situation.

So, faced with mom's anger over all this, I told her that I would just have to take care of myself. I feel like that's what I have to do because my mom is worn out, especially with the extra strain of taking care of me.

But I don't know if I can do it. Today was okay, I even went for a short walk, but here it is at the end of the day and I am feeling really fatigued, feverish, with a sore throat again, like I'm coming down with something, as it has been all this month off and on.

I talked with firewatcher a little bit about the issue of pushing yourself, but I wanted to also ask here,

Here are my concerns/questions:

What do I do if I can't take care of myself? I did it today, but day after day...I worry eventually I'm going to give out. I don't have much stamina in a day-to-day situation, just bursts of energy if I spend most of the time, most days, resting.

If I push myself to take care of myself, am I going to end up making my condition worse - I mean - MUCH worse? Could I end up completely incapacitated, completely and utterly disabled?

Could pushing myself be dangerous in that I could end up in the ER or even die?

How do I know how much I can push myself? How do I know when I'm fatigued but can/should keep going, or when it is time to stop before I end up with major problems?

This is a bad situation and I really don't know what to do. My mom is at her wit's end, at the end of her rope physically and mentally. I've always felt guilty getting her to take care of me, and now I don't feel that I could possibly ask her to keep pushing herself so that I don't have to push myself.

Mom got mad in particular that she was taking care of me so that I could do other things (psychiatrist appt., therapist, teaching, etc.) that I feel are necessary but she feels are extra-curricular, I guess. I've already had to give up a writer's group I was hoping to attend. I don't think it's fair to have my mom take care of me, but I don't think it's fair for her to ask me to give up important stuff either.

Am I being selfish?

To top it off, soon enough, when the money I took out from my retirement (at the age of 29) runs out, I'm going to be completely financially dependent on her as well.

In the end, it doesn't matter, because it looks like I'm going to have to start taking care of myself, even though I wonder if I really can for any extended period of time. I worry that I'm going to give out and make this condition much worse and/or ruin all chances (if I have any) of eventual recovery.

Please help,

Amber

oh, I have another question:

how does tummy compression affect those with GERD/chronic acid reflux?

Amber

well this definitly sounds like something to look into....thanks!

Amber

Now wait one stinkin' minute ...abdominal compression??? is that what the compression stockings are for??? are we supposed to be compressing our tummies, our thighs, our legs or all of the above? Ack!!! What?

I've never done the compression stockings because I've never really noticed any pooling in my legs or feet - no swelling or turning purple or blotchy or anything like that...but it sounds like I could be pooling blood somewhere (tummy? thighs? legs?) and not know it?

Is blood pooling necessarily a definite part of POTS - if I have POTS, I have blood pooling?

I must say, the idea of wearing a tummy compressor is kinda tempting due to the fact that I have a rather disproportionately large tummy anyway. Maybe I could fit into my jeans better. Maybe I could eat without my stomach bloating up and feeling like I swallowed a dad-gum basketball. (Though admittedly I haven't participated in the whole small meals thing. )

But I would definitely try the tummy compressor, especially if it will help my POTS. Do I get a tummy compressor/girdle or a tummy and thigh compressor in one? or the full-on stockings (I hate the idea of wearing stockings in warm weather!)

Amber

I've had a couple ER episodes myself - the first one was especially not fun. They did everything from a chest x-ray to a cat scan, took all kinds of blood. yech.

Second time, different ER, I drove myself to the ER at 6:30am with that racing heart feeling that freaks me out so bad. The doc thought I was having an anxiety attack, but this awesome man did a wonderful/miraculous thing:

He gave me a dose of beta blocker in my IV, gave me a prescription for low does beta blocker, and referred me to a cardiologist. He took me seriously, ordered follow-up instead of simply dismissing me, and sent me on the long journey to a POTS diagnosis, with help from others along the way.

I will remain ever grateful to that ER physician.

But of course ER's are no fun. Sometimes it can take hours for someone to see you, sometimes, like someone else said, they go all crazy and start doing all kinds of tests that make you nervous and anxious and feel even worse. Or they completely dismiss you.

I understand why you don't want to end up there again - follow everybody's advice here. Sit and scrunch up, lay down, drink some water. The ER print-out I got also suggested - and I know this sounds wierd, and I don't know if it works - to bear down as if you are having a bowel movement.

If your heart rate while sitting doesn't go down, please go ahead on to the ER. Take care of yourself, no matter what husband or other say!

Amber

I just found out that DDAVP has a potential drug interaction with Lamictal (water intoxication??? - never heard of it.) I'm taking Lamictal as a mood stabilizer.

Also, you're supposed to do water restriction? That sounds odd.

Thanks for the encouragement Sophia! I know you are completely right. It stinks that doctors can be cranky-pants.

Amber

I have been having the same wonderings too. Yesterday, I felt crapola. Today, I felt much better.

The danger is that on good days, especially when they come after a string of bad days, I feel like I am on top of the world and I want to do what I can after spending day after day on the couch. So today, I took a shower, saw my therapist, then a little while after I came home I decided to go for a walk.

Wore myself out. Now I need to go to the grocery store, and I don't really have enough energy to do it.

I'm thinkiing that I need to move more toward strength-building exercises rather than more cardio exercises such as walking.

I do love my walks, though

Amber

Thanks! I'm glad to see that other actually relate. That's a relief.

I'll have to look into DDAVP. I feel a little odd about asking doctors about drugs sometimes, though - like I'm overstepping my bounds.

Amber

Okay, after starting then stopping after one day, I tried Florinef again at a decreased dosage, yesterday morning and I don't know if this was why, but I had another night of not. sleeping. at. all., even with Seroquel, which knocks most people out if they just lick the tablet. I don't know if my other crazy meds are causing my insomnia (increased the dosage on those recently) or what the heck is going on. It's just coming down to I don't want to take the Florinef, and I'm afraid my cardiologist is just going to throw his hands up with me - he seemed frustrated last time when I said I didn't want to take it because of having to get my blood drawn, he may think I'm just coming up with excuses not to take it now.

Question: How does Florinef help, specifically? Does it make you less tired? Does it make you feel less sick all the time? Not looking for what it technically does, "helps you retain salt and fluid," but what specific benefits had anyone gotten here, other than the generic it made you feel better. Has anybody ever had Florinef cause insomnia?

Another question: I am peeing. all. the. time. lately. I've had two regular-sized cups of gatorade over a span of several hours, and I don't even know how many times I've been up to the bathroom, at least 4 or 5. What is the benefit of drinking more if I'm going to pee all of it out?? Same thing happens when I've ended up in the emergency room and 've had IV's. I can't drink anywhere close to my bed time because as I'm desperately trying to fall asleep, my bladder is a-callin'. I'll have to go two or three times in the space of an hour and a half.

Yet another question: In addition to the fatigue, do any of ya'll feel like you're getting sick, coming down with a cold or something almost all the time, on and off? A few weeks ago (?) I had a cold, then I felt better, but since then, every other day or so, I will feel like I'm coming down with another cold - fatigue, runny/stuffy nose, itchy/watery eyes, drainage, etc. Then I'll feel better, then here it'll come again. I thought maybe allergies, but, honestly, I don't go out of my house enough to get exposure to outdoor allergens. I'd consider indoor allergens, but I've been in the same indoors for, well, all the time, why would that develop now?

Alright, I've got to go pee. Again.

Thanks for reading and for any answers/suggestions you can give.

Amber

Edited to add: I mean, really, am I missing out on a miracle drug here if I choose not to take Florinef? What do I do if my cardiologist gets angry with me and throws up his hands, decides not to treat me anymore because I'm non-compliant with the Florinef?

Edited again to add: My lips have been majorly chapped and peeling for a few weeks - sign of dehydration? Does Florinef/is it supposed to help with dehydration? I totally sound like I am freaking out and I am.

very upset.

Thanks!

Wow! I've never seen cats with spots like that! Cute kitties.

Amber

I'm sorry - is it turmeric or curcumin? Are they the same thing? I'm confused.

Thanks,

Amber

Do I need a facebook account to join? I don't have an account.

Amber