poppetkazutaka

Yes. Dark urine and heavy urine indicates dehydration. Maybe your electrolytes are out of balance from too much water. You can deplete them from diluting your minerals. Try an electrolyte drink, see it you feel better. Keep us posted. Will be interested to find out what you learn.

You mean like Gatoraide? Usually when I drink those things I feel better elsewhere, but my kidneys ache.

I have "unknown kidney issues." I test high on serum creatinine which red-flags all my labs for Chronic Kidney Disease. My actual filtration rate is one point higher than the lowest point of "normal." My nephrologist told me that it was probably "normal for me," but to only take tylenol once every three days and only if I really needed it, basically covering his ###### My kidneys' concentration ability has been questioned for two years, leading to an on again off again diagnosis of pituitary diabetes insipidus. I asked about kidney issues when I was at Vanderbilt for my ANS testing and for my recheck and the doc assured me that if there was something going on with my kidneys, it was NOT due to POTS. My urine is usually as clear as water, unless I'm really dehydrated, then it is a lovely shade of gold and sinks to the bottom of the toilet. I have pain in the kidney region, but for now it is "normal for me."

I test positive for anti-thyroid antibodies, but have a negative ANA. So far, my thyroid levels have come back OK, but the actual thyroid gets firmer with each visit so I figure it's just a matter of time before it goes.

Just out of curiosity, what is your eGFR, serum creatinine and BUN?

I don't know yet. I guess that's something they'll have to test? All they did today was a urine screen for infection but I didn't get any results printed out for it. I do know I'm running an elevated blood pressure, even on meds, and a low grade fever for the past week at least.

So...straightforward question this time...

...anyone got any kidney issues?

I've had kidney pain for a little while now. Years, almost, off and on. I ignore it. But over the past couple months it's been steady-growing-constant, and getting bad. It's a warm, inflammitory sort of pain. Like an infection. So I went to the doctor, not just because of that, but because of the two times I peed tea colored pee. Every other time it's been cloud and sinking. I drink a ton of water, because of the Topa making it where I can't drink soda due to a bad taste. It also makes every drink of soda make me want to die of thirst. So I opt for water almost all the time.

My pee should be clear. Not cloudy. Not yellow. Not SINKING to the bottom of the toliet.

So I went to the doctor. His exact words were, "I don't want to wish anything bad for you but, I couldn't find any signs of infection. It could be back pain so we could try this patch but...again I don't want to wish anything bad for you. When do you follow up with Pansuria?"

Crap. 'I don't want to wish anything bad for you'. "So you're thinking the same thing I am, it's the autoimmune thing attacking it."

"Well, again I don't want to wish anything bad for you," he continues to repeat, "but you might need to follow up with her."

That's enough of a yes for me. So anyone here have any kidney pain? XD

I've talked about it frequently, about the thirty pounds I gained because I stopped eating without realizing it, and then panicked and went diet mad.

So now, just to get myself to eat, I have taken out all the restrictions I had put on myself back when I was healthy. I eat whatever I want, when I want.

That means, if I want fast food, snack food, or any food, I eat it. Snack cheese? Go for it. Fritos for dinner? Sure. Bacon and cheese and egg biscuits for breakfast? That's okay.

Because at LEAST I'm eating.

Somedays I go without eating at all, because I forget. I don't get hungry and I don't crave. So on days where I go, "Ooh, donut! Ooh, pizza! Ooh, salad!" It's a good thing. Because at least I'm eating. Even if it's because I just like to taste food and stick things in my mouth. (Ha ha, I know.) It has nothing to do with growling guts. :3

I figure, heck, I'm autonomic, and autoimmune. I'm dying. BE HAPPY WHILE YOU CAN PUT THE FOOD IN YOUR MOUTH, not a tube.

I can't eat Chinese food because of the MSG, it does that to me. I can eat, however, Japanese food, because it tends to be a little lighter on the MSG. At least around here. :3

I had to do two at once! One day I was refridgerated, the other day I was not. XD

It's very hard to explain but I yawn when I'm exercising! Like, the more I exercise or walk, the more I yawn. I was walking yesterday with coffee in one hand and falling asleep standing up on the side of the street. It's really not normal, or safe. XD

I've been on it for a couple years for migraines and manic depression and weight loss. I ditto the brain fog issues, the tin taste, and you will not be able to drink soft drinks. Also, you will need to drink VAST QUANTITIES of water. It's a pill for people with binge eating issues, which I don't have, but it still treats you for it, so you'll also not be able to eat but in small amounts. So you'll probably lose weight.

It helped with the headaches and the mood swings, so I stay on it. But the mood swings come back about every six months or so, so I have to up it. You can go up to at least 300mg, and I'm only at 150mg. So I have a way to go.

I don't like the side effects (it also affects sleep when you increase dose, so be wary of insomnia, nightmares, and night sweats) but the migraines were far worse.

Now...I hae always as lways been very thin. Same weight for 20 years. But I have gained 10 lbs in 1 month. I am even eating less...but I have added baclofan and ativan to my meds everyday as I was having terrible tremors and spasms. I also take Zoloft but I hae taken it for a while and had no problem with weight gain before this....I love the new meds...I can stand without shaking and generally feel better. But I can't handle the extra weight and so fast.

Any ideas?

Erika

The thing that stands out to me?

I AM EATING EVEN LESS.

Make sure you're getting the amount of calories that you need and that your body requires.

For a while I gained up to thirty pounds and kept gaining and couldn't figure out why. I went to a nutrionist and she found out I was eating only about 850 calories a day, and burning off 300-450 of that! Because I was freaking out at the gain, I would eat less and less, and then I would gain more weight. Also, some days I wouldn't get to exercise or I would eat more, and I would go right into fat storage because I was in a starvation mode.

Make sure you are getting small meals or at least three meals a day with small snacks totaling no more than your daily allowance in calories a day. It should range between 1500-2000 a day depending on height, weight, and age. Mine's about 1800.

If you're feeling better, you're getting more exercise. You're wanting more food. You're eating less. It's a cycle. You're body's screaming, "Dear God, she's trying to KILL ME."

Don't let it get you down. We have bad times and good. Some of us still manage to get through work and errands on our own because we know the symptoms and know when to go to the bathroom\car to have a momentary breather. It's just something you learn to live with depending on severity. If I feel like I'm about to crash I know what to do depending on what's going on.

If my heart's heavy and thumpy and I'm thirsty and flushed, oops, I've been slacking on the water. So I drink a lot of it, and make sure to put a little salt in there because if I don't, I won't absorb it.

If my heart's slow and thready, I'm tired and haven't been eating so I should probably stop forgetting there's a breakfast\lunch\dinner, not a 'just a moment, when I'm not busy'.

If I feel sore all over and everything's a bruise, I'm autoimmune, that's normal, but it's compounded by my pushing too hard at exercise and work. I should probably rest but I'm bad at that.

So it's all about learning. Learning to live with a new cross to bear. :3

I get up and pace a lot, and 'circle' the bed when I'm most tired. I also have made mention that when I'm most exausted, is when I'm most in the mood for 'affection'. It's like...I really, really don't want to rest, and my body will find any and all excuse to keep going.

I blame it on my mania. But it's probably also a reaction to the POTS, too. It's possibly also because I'm afraid of what people might do to me while I'm out, and probably why I never go completely unconcious, and snap right back.

I haven't gone completely out, but I notice sometimes I have fading, and I wonder why the lights are dimmer than they're supposed to be. It's usually later in the day when I'm tired, as if my body's trying to tell me it's time to shut down. Like a computer monitor fading out. I try to open my eyes wider, thinking I can let more light in like an ISO filter on a camera, but it doesn't help.

So don't worry about it, I think it is part and parcel. :3

EDIT: I should mention I have congenital ptosis (I was born with my left eye lazy) and when I'm tired, it gets worse. :3

I'm too hyperactive. I mean, I'm manic depressive so I'm sure that's where some of the energy comes from but if you knew me I have to constantly be doing something even when I'm not feeling well. I had a period there before I got my medicine right where I was too tired to do anything but once I got the Birth Control and Topamax settled, I was back to my old self of popping around. I'm like a toddler. Let's play, let's go shopping, let's go do this -I need to sit down a bit- Hey! Let's go do crafts, let's go play dolls, let's -I need to sit- go look at that over there, I want to write, I want to box things up in my room cause its messy now, and -I need to sit-...

So yeah. I'm definately not CFS-y anymore. I'm in pain, yes, and I have nerve damage. I do have days where I feel lethargic, but I will not allow myself to lay around, even if all I do is walk circles around the bed. XD

So I was researching this 'shortage' my pharmacy mentioned and I noticed this in a websearch and in the wiki article:

A review in Prescrire International summarizing the existing evidence noted that duloxetine has limited efficacy in depression and no advantages over any other antidepressant. Prescrire observed that, taking into account the risk of hepatic disorders and drug interactions, there is no reason to choose duloxetine when so many other options are available.[2] Similar analysis was presented by Drug and Therapeutics Bulletin, which is a part of the respected BMJ Group.[20]

Summing up the existing evidence, a review in Prescrire International recommends pelvic floor exercises, which are "risk-free and effective in two-thirds to three-quarters of cases", as the first line treatment of SUI. Duloxetine use reduced the frequency of stress incontinence by one episode a day as compared with placebo. "The tangible effect of duloxetine on the quality of life is doubtful, with a maximum gain of five points on a 100-point scale." The review notes that, at best, duloxetine efficacy is "modest and transient, while its adverse effects are numerous and potentially severe."[1]

Duloxetine was not effective for the numbness or tingling, nor for the other complications of diabetes. It reduced the pain without treating the underlying nerve damage.[30] Only tight glycemic control was unequivocally demonstrated to slow the progression of neuropathy.[31][32] Benfotiamine, alpha-lipoic acid and ranirestat have also shown some promise.[32]

The comparative efficacy of duloxetine and established pain-relief medications for DPN is unclear. An independent systematic review in BMJ noted that tricyclic antidepressants (imimpramine and amitriptyline), traditional anticonvulsants and opioids have better efficacy than duloxetine. Duloxetine, tricyclic antidepressants and anticonvulsants have similar tolerability while the opioids caused more side effects.[31] A review in Drug and Therapeutic Bulletin saw no place for duloxetine in the treatment of DPN, based on its high cost and insufficient evidence of the comparative efficacy with tricyclic antidepressants.[3] Another independent review in Prescrire International, considered the moderate pain relief achieved with duloxetine to be clinically insignificant and the results of the clinical trials?unconvincing. The reviewer saw no reason to prescribe duloxetine in practice.[2] The comparative data collected by reviewers in BMC Neurology indicated that amitriptyline, other tricyclic antidepressants and venlafaxine may be more effective. However, the authors noted that the evidence in favor of duloxetine is much more solid.[33]

So...yeah...I've already called the doctor prior to reading this because of the expensive co-pay, the antibiotics I'm always on, and the 'shortage', but I'm wondering if they're not thinking of taking this off the market because of its dangerous side effects and limited use?

Poppet,

If you have had problems with water getting in your ear with a neti pot you may find it easier and more comfortable to use a Neil Med system. It is a squeezy bottle that directs a flow of warm salt solution up your nose. I find it easy to get a steady steam of fast moving water that goes in the right direction. You could put the antibiotic solution into the bottle too. I hope you get some relief soon,

Flop

That's what I use, the squeezy version. :3 It's how the water got in there. My sinuses are really...misshappen... XD

18 yr old with POTS and Autonomic Neuropathy has every symptom listed for Dysautonomia PLUS: she not only has heat intolerance but has very strong symptoms from sun exposure.

After only 5 mins in the sun, she develops a vibrant rash on face and upper chest and for the next day has extreme disabling autonomic symptoms.

I know that Porphyria and Lupus can cause this type of reaction but she has repeatedly been tested for both of these and test are negative.

Is this a autonomic problem or something else? Anyone else have this experience?

I have autoimmunity of some sort (hasn't been pinned down yet) and I have to wear a floppy hat and long sleeves now because if I'm out for more than five minutes I instantly start burning. I also have sensitivity to fluorescents, so I constantly have a face rash. :3

Steroids- great fun . Are you able to sleep at all? That's the worst part to me- difficulty sleeping which I need to heal.

I have those squishys all of the time in one of my ears- part of the reason I'm doing the neti pot. I haven't cleared my left ear in over a year. I'm not sure how you got it in your ear, but I know it's all connected. If I'm not breathing correctly, the fluid starts to go down my throat. I have to concentrate & gently blow out the nostril I want the fluid to come out of. Perfecting the neti is an art .

Keep the Wilson's solution in mind. Mt allergist is from Mayo and has had great luck treating patients with chronic sinusitis using it. In your case, it would be great WITH antibiotics and/or steroids.

I hope you're on the mend soon. Stay on the ground with those 'roids . Keep us posted on your progress.

Hugs-

Julie

Well, I went to Dr Zia today (neuro) and he tried to put me on Cymbalta for my mood swings since I was asking about uping the Topa and I guess he missed the note where it said I was on a quinolone antibiotic. Also, apparently there's a manufacturing shortage of Cymbalta right now and its $50! So I'll have to talk to him in the morning about how that's not going to work. Gah.

Also, I might have nerve damage but he wanted to do a 'painful' test to make sure and I declined. It's only 'treatable' and not cureable anyway so I don't think I want to be hooked up on electrodes and shocked at random intervals. He did a tuning fork test and was suprised I could still feel the vibration for about a minute and a half with my foot twitching about a minute into it. The whole thing came about because of the lost feeling in a pink patch that appeared on my foot. He blames the Topa and I said it wasn't so bad that I should take a painful test. I do get tingly but I stave that off with alcohol (I didn't tell him that, I forgot. XD)

So all in all...I'm autonomic, autoimmune, rotting out, and have hypersensitive damaged nerves.

HOORAY. I think I'm going to go back to the final battle in my book now and kill some people. [cracks fingers]

Poppet,

All of that sounds really bad. Sinus infections can be serious business. Have you had a CT scan recently to see how extensive this is? I ask, because there are some sinus infections, especially cavernous, that are quite resistant to oral anti-B's. My brother was hospitalized for weeks with one & went home from the hospital with IV anti-B's.

In another post, I encouraged you to try a neti pot with Wilson's Solution (saline & antibiotics.) This is something your doc can call in. It delivers antibiotics directly where you need them with NO side effects.

One last thought, you could have a new viral infection that is worsening your symptoms. That's happened to me a few times while I was in the midst of an acute sinus infection- makes it hard to figure out what's what.

I hope you can switch your antibiotic soon.

Hugs-

Julie

I've had a sinus infection since July 09. I had the surgery to clear it in December and for about a week I felt wonderful. Then I got a virus again and got sick once again and now it's moved into my ear.

I called the doctor about the fever and sore throat. They called me in a Medrol pack. So I'm going to be on steroids again, hooray.

This life is getting very difficult! :3

Edited to add, I'm afraid to try the washes again now, because the last time I did I got water in my ear and ever since I've had squishies. It's clearing up slowly but I don't want to squish it again.

Poppet

Sounds like you definitely need the anti-B. Have you had luck with any others? For instance, I'm allergic to biaxcin & erythromycin, but do fine with zithromax (z-pack.)

Your side effects sound extreme to me. I'd let your doc know & see if s/he can change you to a different med.

Julie

Well, I called them because all day I've been feeling worse. I'm running a temp and have had a worsening sore throat that's now been here to stay for about 24-hrs. It's apparently not working, or if it is, that's one of the 'serious' side effects.

They've tried Z-pak and all the other 'baby' antibiotics as I like to call them. The infection continues to stay and return. It went away with the surgery in December, but returned a week after that and won't go away again. It's almost as if I'm not meant to be well! :3

Hopefully the clinic will call with something else I can take and not have to have me come in. My chest hurts. >.<

The sinus infection still hadn't cleared and now it's moved into my ear. So far I don't know if its working, I haven't felt any better, but it might be because of the Avelox itself. The $50 antibiotic of evil. Because I read about it and asked the pharmacist about it before filling it.

Thirty minutes after taking it I feel dizzy and light headed. My heart starts pounding and I feel like I'm going to faint. I know on some of the older posts here that seems to be a normal for autonomics like us? The only problem is I have to take this or the infection might continue to spread, if its helping it at all. Like I said I'm not sure it's fighting it because I'm not feeling that much better.

I've been so manic lately, especially while on the antibiotic. I don't want to sleep and I want to clean like crazy. I began spring cleaning this weekend and managed to clear out a cabinet I've been meaning to do for months. I'm probably going to move onto the closet soon. And under the bed...

The first day I took the medicine, I started breaking into tears that night for no reason. Is it really supposed to affect you so crazily?

I remember being on Cipro twice in my life, and I'm beginning to wonder if it's not related to the rest of my problems. I started hurting all over the other day, really bad, but since then it hasn't been so bad. I am bruising easily though.

I feel in a bit of a darned if I do, darned if I don't situation... XD

Well, being single and having never done anything before I can only give 'on hand' experience but...

I always blame it on one of a few things:

Blood flow.

Hormone levels.

Blood pressure.

Fatigue.

Of course, I always found when I was fatigued I was in a better state. But I also don't get aroused anymore. I only really do anything maybe once a month, right before my period, and just so I can get the hormones to jump start the period. I'm on birth control, but for some reason I won't start bleeding unless I do the whole 'get down there and have fun'. It's like a trigger or something. I haven't a real OB/GYN to ask about that so I don't bother. I only really spot anymore anyway.

With the PCOS and autoimmune issues, it ain't like I'm having children! :3

Taking it from a clincal view, there are times that if you focus, it seems like it wants to go off but there are muscle spasms that are not on rhythym with the rest of the body. So it's also possible that it's a misfire of your brain's signals. It's supposed to go up, up, up and then release. But it scatters and misfires into smaller, less controlled spasms. So you are doing it, but you don't feel the same release as you should. Your brain thinks it's orgasming, but your body doesn't get the feeling it craves.

God, for a virgin I sound so perverted.

So I suffer from chronic sinus infections because my sinuses are breaking down due to the autoimmunity. Well, I'm sick of going to the doctor to get antibiotics and getting a little better, then worse, and then little better, then worse.

So since I do the sinus wash, and because I found honey (natural antibiotic) helps injuries and my throat when I'm sick, I put two and two together.

I dripped honey in the bottle, warmed the water and wash, and squirted it up there.

I'm going to see if it helps. So far, my sinuses and nose aren't hurting. They haven't bled. I haven't felt like blowing the heck out of them either.

I figured it couldn't hurt.

I know it's not 100% POTS related but I know some of you have chronic infections, too, right? XD

The alcohol is still helping. >.>'

I'm ordering a water with every diet coke I get in a restuarant, because I have to have water with coke now. XD

I'm learning to live with this. It's a daily process.

Propranalol has been known to cause high blood pressure when taken just for regulating irregular blood pressure. I took propranolol because I was having episodes and it worked wonders. And then my blood pressure kept going up for no reason. So I had to change to labetalol because the propranalol was causing me to be hypertensive. Now I will be on high blood pressure medication for the rest of my life thanks to the propranolol.

As far as weight gain goes, I haven't heard about it causing that. I think you meant to say, amitriptyline, and that will cause weight gain, because its an antidepressant used for migraine control. All antidepressants in some form will cause you to gain weight because of how they work: http://en.wikipedia.org/wiki/Amitriptyline

Well, either way, I've been doing this since last week and I have to say that overall I'm feeling much better! The tingles have gotten better, the brian fog is better, sleeping is better, and I'm not hurting as bad. I'm not 100% better, so it's definately not a cure all, but it's helped with the circulation issues that were causing me to get worse.

Alcoholism runs in my family. My mom was an alcoholic. My sister was an alcoholic. My mom's sister is an alcoholic. So I have to be careful because I also tended to build addiction to pain killers in the past. But because I have that warning and because I'm usually really good with not letting myself get away with things, I won't let it get me. I've only had one a day, and it's about $5 a box for four wine coolers. I'm cheap, so... XD

I have a follow up with Dr. Zia on the 20th. I'm going to tell him about the alcohol, the toe that I've lost feeling in, the left sided weakness, and the tingling sensations. So maybe he can help me out with why it's doing that. I'm going to think it's probably the inflammation caused by the autonomic attack. It's definately going after my circulatory system, thyroid, and who knows what else, because they have found all those things in my blood stream. So I am sick and releasing the inflammation would make sense that it makes me feel better.

I don't think there's anything they can do for me at this point. No medicine is going to help, because it will all have side effects worse than the treatment.

Alcohol is probably better than anything they can give me! XD

So I finally broke down and went out to get a pack of wine coolers. Strawberry daquiri bartles and james like I used to like years ago. I've had a stressful bit and I just said screw the medicine, I'm going to drink one. Can't hurt too bad if I take it slow and don't have more than the one. I know I'm on a blood pressure medication and an anti-psychotic\happy pill, but whatever, I need it really bad and it's been two and a half years.

I felt great. I slept wonderfully. I had a great morning and didn't die to get my meds. I wasn't dizzy in the shower and though I still have brian fog I feel rather focused and I'm not in any pain. I feel...WONDERFUL.

I looked better, too. I had blood flow. Color. No pale skin with flush in my cheeks. I wasn't stumbling into the walls. In fact, I was more normal as a drunk than when I wasn't! And I had only had one wine cooler!

What the heck? Is it because it thinned the blood or something? Increased the medicine in my blood? Relaxed me?

What could have been the solution?