scarfgirl

I don't do treadmills well, so I doubt a desk would be much good. I'm mentally designing a recumbent bike desk though.

Unfortunately, my divorce has been a nightmare so far, so my only advice would be to NOT do what I did.

I will observe...If he's gonna use your health as a threat to take your kids away, you can do the same with his mental health. Especially if he's not getting treatment.

Well, rowers are generally the best all-around cardiac exercise you can get, but yeah sometimes my back just won't let me. Recumbent bikes are great for us POTSIES, me especially. Getting a device that could be both would be awesome. And best of all, I could put it in front of the TV so I'd have something to keep the boredom at bay while I'm using it. Heck, I could probably play video games while operating it in bike mode. And I could place it right on top of one of the AC vents.

My mom has a treadmill, but the second the temperature hit the 70s I had to stop using it. Right now I'm stuck with weightlifting in short bursts....it's the only thing I can do where I don't overheat. Gyms are out for me since I can't drive, and besides gyms generally keep the temp pretty warm.

No med that I know. Florinef can help you retain fluid I guess, so you don't dehydrate as quickly.

My suggestion is to get an air conditioner. Fans can only do so much. I have my 'igloo room' that I retreat to when it gets too hot in the rest of the house.

There was a discussion on this board earlier about what type of exercise machine was best for POTSies, a discussion that evolved mostly into an argument about rowers vs recumbent bikes.

I was searching for any type of equipment I could afford and came across this thing, originally on Ebay. It's a combination recumbent bike/rowing machine. Sounds awesome, in theory, but I'm not sure how well it would work in actuality, and I can't really afford to take a chance on a $600 piece of equipment right now. I looked around for reviews, but couldn't find enough to feel comfortable buying from reviews alone.

What think y'all? It's a great idea, at any rate. Anybody know of a place that might sell equipment like this, so I could try one out for myself?

That's a beauty.

You don't quite have the bull's-eye thing going on yet....looks more like a mosquito bite that went horribly wrong. Did you pull the ticks off before you killed them?

Every tick bite I've ever had came from North Georgia. My grandma's family had a house up there, and I can remember staying there during the summer. Every time we came in from the outdoors we had to check to see if any of our moles moved when we touched them. My grandmother had horrible eyesight, so despite my moles having eight legs, she'd insist I was being paranoid, and I had to wait until she went to bed to put nail polish on them (which was ok by me since her idea for killing them was to put her cigarette on it. Yikes!).

Hope those bites don't mess you up any, and that Macks' antibiotic treatment caught any problems before they could start.

That's so awesome!

I'm supposed to be getting tested for narcolepsy; I keep pushing the tests back since it's not as important as chasing down this mysterious infection I have, but I will get around to it sometime soon.

The unfortunate thing is I have loads of symptoms that just don't fit the text book definition of Dysautonomia, the latest one is Nocturnal Dystonias where I find myself constantly waking up through out the night in painfully contorted positions and finding my neck and jaw muscles locked up and stiff, I find that whenever I try to move my neck back to a normal position I get a very loud high pitch cracking sound in my neck and jaw followed my severe headaches, same thing happens to my neck whenever my POTS symptoms flare up or whenever I have an adverse reaction to medications, food and other chemicals.

I had a similar situation to this, except it was shoulders as well as neck and jaw. I started taking a muscle relaxer (Soma) before bed and slept with a back brace on and a mouth guard. I have no clue if that would possibly help you or not, but it did wonders for me. I still have to use the mouth guard every night, but the rest I usually go without now.

Finding out my husband was cheating on me and the divorce that followed almost killed me, literally. I know that's a stressful time for everyone, but it put me in the hospital for a week. My body acted completely out of proportion to the amount of trauma I suffered. My body cranked up to full fight or flight mode and wouldn't come back down. And a POTS person can't stay in a state like that for long w/o some nasty repercussions.

My constant joint/body pain turned out to be because of a vitamin D deficiency. After about a month of supplementation it went away. It's back now, but I'm pretty sure what's going on this time is an infection related joint ache.

Hi Charmed,

I also go to the Birmingham Clinic. Dr. Watkins REALLY likes to prescribe Klonopin, but like you it only makes things worse for me. I seemed more emotional, and I was always dopey. He said I was hyperadrenic as well, but I have doubts about that. I think I'll ask if he has an alternative treatment to Klonopin.

I don't think I've ever really learned to deal with it.

Lactic acid test? I thought Mito tests required a muscle biopsy

I know how you feel. When the doctors don't have answers, you are forced to search for answers on your own. Has your doctor suggested Ritalin? There was a study that discussed Ritalin for patients that failed Midodrine. My POTS specialist also mentioned Provigil for brain fog.

My doctor refuses to prescribe it--despite recommendations from another doctor and my therapist (both are out of state and can't prescribe it themselves). I'm gonna try to convince him again on Tuesday. I HAVE to be able to function better than I am now.

I've never had ANS testing. I don't even know what that involves.

Standing catecholamine, aldosterone, and renin. I'll check up on those. Can you tell me specifically what those tests would reveal? Is aldosterone the test that had me misdiagnosed with Addison's, and would my taking florinef mess up that test? Same question with taking a BB and having the standing catecholamine?

Sorry to bump my own post, but can anyone answer these question for me? I'm seeing the doctor on Tuesday and need to get all my ducks in a row.

I don't have the pain, but I do have breathing issues. I haven't taken a full breath in almost a decade.

I tried to retrain my body. It didn't work. If that were possible; I wouldn't have 'let myself' get sick in the first place.

I quit my last job because after standing for a few minutes, all my customers started sounding like Charlie Brown's teacher.

If I can beat this last round of brain fog back, I'm gonna work through government programs set up to help people on disability find work.

Unless the cause is isolated in an individual patient, therapy seems to be trial and error though certain parameters may sway therapy in one direction or another.

That's what I'm trying to do. I need a direction to start looking so I can figure out what to try next. I know I get pooling in my legs, that vasoconstrictors sometimes help, that vasodilators are always BAD, that klonopin doesn't do anything for me. That midodrine used to be great, before it stopped working. My most debilitating symptom is actually brain fog, not passing out or exercise intolerance. I'm hoping if I get enough little clues I'll be able to figure out where to go from there, since it's pretty obvious no doctor is gonna help me.

Clonidine did nothing for me. I wish I had recorded the dosage, so that I could compare to what dosage people who have had success with it take.

I'm sorry. I recently got out of a superficially supportive but ultimately negligent relationship, and no one should have to go through that. It's so hard, because most of us need SOMEONE, our illness is too difficult to handle on our own, but you can't force people to become loving and supportive no matter how much you need them to be.

I moved from South Ga to Seattle for about five years. It was HEAVEN. Now that I'm back in GA, I'm already starting to panic at the rapid temp increases. And the humidity is just AWFUL. Misting yourself just makes it worse.

I always had to wait until I had a better than most kind of day. I learned to cook large quantities of food that I could freeze in small portions, since I never knew when I would next feel good enough to cook again.

I stayed veggie because cooking is SO much easier when you don't have to brown meat. Even now, that I've had to start eating meat again, I won't cook with it. Just too much trouble. Skipping on browning and not having to worry about sanitation when prepping makes it so much easier.

I would also set aside huge blocks of time for cooking, especially the prep part. I had a set up like you see on cooking shows, with all the bowls /w ingredients already measured out, just waiting to be dumped in at the right time. Because while I could take my time with prep and clean up, the actual cooking part you had to just get done with as soon as possible.

I also became an expert with SLOW cooking. No stir-fry, lots of casseroles and one dish meals. While they take longer, cooking wise, the actual effort is less, and the heat exposure is minimal.

I used to have a wonderful kitchen that I designed around my dysautonomia. Changed my life, at least in the kitchen. It's gone now, and I'm trying to figure out how the heck I can cook on an electric stove in the summer. I've been subsisting on microwaved TV dinners, and boy can my stomach tell the difference

Brain fog is my worst symptom. I feel like over the last couple of years, I have improved somewhat in my physical stamina but the brain fog still is quite disabling.

I find it impossible to keep up with all the posts on the board and can not reply to all the posts I would like to. I just fatigue way too easily. Sometimes I feel bad that I am not able to give more support to other members by replying more often, but it is more than I can seem to do. I'm not sure how some of you do it ... it really does take a lot of thinking and energy ...both of which I am lacking.

There is no way I could listen to music and work on puzzles, because I can't seem to concentrate with any kind of distraction. I can't talk on the phone when my dishwasher is on in the other room because it is too distracting. I have to mute TV commercials to talk to my husband because I can not concentrate on our conversation with any noise. It's very frustrating.

Actually, I have been working with an occupational therapist for a while doing cognitive rehab. I was really unsure if it would be of any benefit since I believed my fog was caused by poor cerebral perfusion. My therapist has been wonderful!! ....so patient and understanding. And I do feel it is helping me. It is not really making the fog go away, but it is teaching me strategies to help me remember things, and focus my attention. It's not happening fast, but after 3 years of this, even slow progress is exciting!

Just replying to this has taken me 1/2 hour of thinking about what I wanted to say and typing it and my brain is worn out .

Sorry you are dealing with this too, KeXia. Here's hoping our fog lifts!

Summer

Oh, thank you Summer. Your post made me feel so NORMAL.

I think I'll check into occupational therapy. Although I think my brain fog is related to blood flow or something similar, I think it might be a good idea, therapy wise, to treat it like I have a learning disability. At least until I find my miracle cure. I've already started (or started trying anyway, hehe) to read up on adult ADD and see if I can apply it to myself.