ljoeb

Count me in... ever since the temp has been above 90 for the last 3 weeks, I have had several bouts of tight chest and loss of breath. I am convinced that the ambient temp outside (even though I rarely go outside) is the culprit.

Hey Angela... I'm right there with you. I, too, put on some weight with the onset of my disorder. I've been doing Weight Watchers for about 4 months now and it is an easy plan to stick with. I think you will do well!! If you need any help with it, just let me know!! Joe

I met with my EP doc yesterday who specializes in the "cardio" part of autonomic disorders. With my other "sympotms" that have cropped up over the last several months, he says I will need to see someone that can deal with my complete system. I asked if if Vanderbilt would be a good option and he said most definitely. He is good friends with Dr. Raj and is going to send a referral to him hopefully by tomorrow or by no later than early next week. He also told me to fill out the "Initial Questionnaire" and fax that in. I will do that tomorrow.

Question: How long does it usually take to hear a response from them? I am hoping that my doc's referral will expedite things.

Any thoughts? Thanks!!

We know your HOT Joe.

Watch out... my wife reads this posts too!! HA!

In just the past couple of weeks I have developed a symptom I couldn't find discussed on this board (maybe it has been and I just didn't look it up correctly). But my skin feels extrememly warm... almost, but not quite, like a sunburn. To touch it, it feels normal, but to me, it feels like I am burning up, literally. If I place one leg on the other, I can't keep it there for long because it gets much hotter feeling at the point where the legs are making contact. The sensation is all over too. Seems really weird to me! Any ideas.....

My doc is just the opposite. I saw him 6 weeks after starting florinef and he did a blood test specifically for potassium. He says that is one thing he wants to stay on top of, especially with me, as I had low potassium levels when I went in the hospital last June prior to figuring out what I had going on.

For now, he just wants me eating bananas. I also drink V8 Fusion which has lots of potassium in it.

Thanks flop... I am staying inside and getting out very little. I think it has alot to do with just the "overall" temp and humidity outside, even though I stay cool inside the house. The other big problem for me is that I don't sweat much at all, and so the heat and humidity can wreak havoc on me in a very short period of time. But I do consume volumes of water, gatorade, and weakened tea... about 150 ounces or more a day.

Yepper... I have chest pain almost daily, it goes along with my feeling like poop in the mornings. Before I knew anything about this disorder, I thought I was having a heart attack, but now I know its just a part of my disorder. I do pay close attention though, to make sure I don't get short of breath or have pain shooting through my shoulder. But I have had just about every test you can have on your heart, and other than needing a pacemaker for severe bradychardia, my arteries are "clean as a whistle" and I have no disease process at all. And my doctor has assured me that I don't need to worry about it.. its just part of the process. Hang in there!!

I had a lumbar fusion (L5-S1) and 6 months later had cervical fusion (C5-6-7, I think that's right) 6 months later. My "disorder" didn't come into play until after my surgeries. I am thinkng there is a direct link to one or both. I now have a herniated disc right above my cervical fusion.... but it is not causing "too much" problem now... I do have some pain and numbness in my left arm, but not anywhere near what it was like before my surgery.

thanks flop!! Yeah, I kinda exagerated on when I started feeling better on the initial florinef... my doctor did say it would take several weeks for it to take full effect. I also increased substantially my sodium along with the florinef. So it really took a few weeks before I started feeling better... but boy did I feel better for a good month or so.

I haven't had the 24 hour urine test yet, but have seen it talked about and was going to ask my doc about that. I did have a restest of my blood volume right at 6 weeks after I stared florinef and it came back in the normal range. It was quite low for the first test.

I am seeing the "progression" of this disorder. Last summer was the first "heat" with my condition, and I did have to be careful being outside and noticed that my condition was a "little" worse during the summer. That was right in the middle of all my initial testing, and I just counted it off as being anxious of the "unknown" at the time. I was thinking of my condition worsening this summer and realized it has been directily related to the outside temp being above 90 degrees for the last 2 1/2 weeks. Even though I don't go outside much, I am still feeling the effects, and it is much worse so far this summer than last.

Thanks for everyone's insight and help.. it is quite comforting to know there are "others" out there.

Thanks Carmen... I was just considering taking half my med twice a day instead of all at once. I'll see how that works.

I already am consuming massive amounts of fluid and sodium daily... It just must be one of those "weird periods" that I hope will soon pass.

Ok.. Ok... I know there has been a lot posted on this site about florinef. But to be honest, my mind is in a "fog" again, and I really am not up to searching through the older posts... so, please forgive me!

Here's my question: I had been on a very minimal dose of florinef (.05mg) for the past 2 months or so and I was on cloud nine. I felt better than I have in almost 2 years. Welllll... what goes up must come down (or so they say) and after a few days working at a grand opening of a convenient store my brother-in-law owns (I was much more active and up and about over these 3 days then I have been in a long time), I crashed!! I got home and spent a week in bed for the most part, had numerous pre-syncopal spells upon standing (just like the pre-diagnosis days), severe brain fog, confusion, and fatique.

My doctor had told me that I could increase my florinef to .1mg, and I did so a week ago. But I have actually felt much worse. I can get out of bed for a couple of hours, and then I gotta lay down for a couple of hours (I never was fatiqued in the morning before... it usually started around noon or 1pm). I do have a few good hours in the late afternoon, and later in the evening. My head feels like its in a vice, my neck pain has started back (I did have cervical fusion and still have a herniated disc above the levels fused), I am in a constant fog. I honestly feel worse now than I ever have!!

Is this just a "build-up" period for my florinef increase? When I started it at .05mg I felt great within 24 hours. I see my doc next Wednesday.

Thanks for your thoughts! Joe

I see my EP doc as my main one.. about one every 6 weeks now. As soon as I level out on meds, he said I will be seeing him once every quarter and then half year. I'm looking forward to that as he is 60 miles away!

I've been taking 150mg of Trazodone every night for the last 10 years or so ... works like a charm!

Hey all!! I had my first complete fasting blood test done last week since I started florinef 6-weeks or so agon, and got the results today. Everything was great the doctor said except my blood sugar was 151. I have never had an issue with my blood sugar being too high. I did a search on florinef on the internet and found that it can cause an increase in blood sugar. Anyone else had this happen and what are you doing to keep in under control? Thanks!! Joe

The "coat hanger" pain is the good ole' trapezeus muscle that tightens up. I have had cervical surgery, and it gave me fits before and right after surgery. It cleared up for several years, but lately, it is starting to give me fits again. I am attributing it to my becoming much more active over the last couple of months since I have felt better than I have in the last few years. I think I may be overdoing it.

I was in advertising/sales right before I got ill. Before that, I served as an Associate Pastor of 3 local churches for 15 years here in the Fort Worth area.

I have been off work since June '07. I hope to be looking for part-time work here in the next month or so. My doctor wants me to be well acclamated to florinef before he will release me to drive and work.

It's worked out rather well, though. My wife's 85 year old dad lives with us, and I have been able to make sure he eats well and gets his meds on time and to provide company for him while my wife works. I am basicllay the "house husband" and take care of most of the chores around here.

I don't sweat... I had a sweat test but it came back "normal," but I can work in my yard for 2 or more hours, or walk briskly for 30 - 40 minutes and I might get a few beads of sweat above my eyebrows and in the crease of my groin area and maybe on my neck. I have done aerobic classes/spin cycling classes in my past life, and while everyone else was soaking their shirts, I again may have had a few beads on my forehead. My doc said that that was a part of my disorder, but I read mostly where folks have just the opposite problem and sweat too much... any thoughts? Thanks! Joe

Hey Zach! Glad you found this site. My only recommendation would be to ask your cardiologist if he treats people with dysautonomias. You can look on this site and find doctors that may be in your area. If there aren't any docs from this site in your area, I would recomend at leat an Electro-Physiological (EP) cardiologist. Some "regular" cardiologist will give you the run around (it took me 3 months and a lot of wasted tests before my cardiologist sent me to an EP doctor and that is a short time compared to others on this site). I would start with an EP cardiologist to begin with.

Hope this helps! Joe

I think the 8 - 10 cups a day applies to a normal person. I consume that amount or more by noon if not earlier. Gum chewing helps some, but I gotta have the fluid!

When I am congested, I add a little "Vics Vapo-Steam" to the water compartment and it helps quite a bit.

I stay thirsty all the time... I drink volumes of water and use "0 Calorie" mix-ins in some of it (like Crystal light type mixes). I also will add 1/4 cup of tea to 24 oz of water every so often. I also drink 20 - 40 oz of G2 (the low calorie gatorade). All in all, I'll drink easily 150 oz or more of fluid a day... and pee out just as much

I use an Optilife CPAP mask. Its a nasal cushion type mask. It doesn't interfere at all with reading or watching tv. I can also lay directily on it when I am on my side and it stays in place. I've seen my buddy sleep in his full face mask and it looks like a spider is all over his face... yikes!!

It took me just a few days to get used to it. My pressure is 14. My machine has a way for the pressure to "ramp up" over 20 minutes or so, but it only took a couple of weeks before I could just start it out at full rate. It is definitely a "dream machine!"

My doc wants me to have 2000mg a meal at least and 6k - 8k a day. If you look further down in the discussion, you should find a list of foods and how much sodium is in each. Good luck!! Joe

I've been asked by a few for the High Sodium Diet that my Dr. (Dr. Amer Suleman) started me on, so here it is:

High Sodium Diet

The daily intake of sodium originates from 3 sources:

Food and drinks.

Salt used in cooking.

Salt added at the table.

In general, natural foods contain relatively little sodium, and foods of animal origin usually contain more sodium than fruits, vegetables, and rice. The processed and preserved foods have the highest amounts of sodium.

To increase the sodium intake, large amounts of salt may be added in the cooking, either as sodium chloride (salt) or as sodium bicarbonate (baking soda/powder).

Common Sources of sodium:

Table salt is sodium chloride. It?s 40% sodium by weight. When you buy prepared and packaged foods, read the labels. Look for words ?soda? (referred to as sodium bicarbonate, or baking soda) and ?sodium? and the symbol ?Na?. These products contain sodium compounds. Avoid low sodium foods. The following foods are high in sodium and should be used frequently:

Canned foods (vegetables, meat, pasta meals)

Processed foods (meats such as bologna, pepperoni, salami, hot dogs, sausage)

Cheese

Dried pasta and rice mixes, frozen dinners

Soups (canned and dried), dips, sauces, salad dressings.

Snack foods (chips, popcorn, pretzels, cheese puffs, salted nuts, etc.)

Tips to increase sodium in your diet:

Salt should be used wherever appropriate, in cooking, e.g., boiled vegetables, boiled rice.

Salt should be added to meals at the table, according to taste, and without making food unpalatable.

Try to choose a helping of any of the following salty foods, AT EACH MEAL AND SNACK:

-bacon, ham, tongue, corned beef and any other canned meat, sausages, kippers, smoked fish, canned fish- e.g., sardines, pilchards, salmon, etc., cheese, shellfish, canned vegetables- e.g. baked beans

Choose salted foods instead of regular whenever possible, such as salted butter, salted nuts, etc.

Milk- aim to take 1 pint or more daily

Canned soups- choose a ?starter? whenever possible

Remember to take plenty of fluids with gradual increase in high sodium foods.

High Sodium Food List

Make these foods always available and part of your meals and snacks. The goal is to take about 10,000 to 12,000 mgs of sodium per day. Take plenty of fluids with these foods.

Foods (per serving) Sodium content in mg

Bacon, cooked 1021

Bacon, Canadian 2500

Baking Powder 11000

Beans, canned with pork and tomato sauce

463

Beef, corned 1740

Beef hash, canned 540

Beef, dried 4300

Biscuits 630

Bouillon cubes 24000

Bread 300 to 500

Butter, salted 826

Cereals, commercial 700 to 1100

Cereal, rice flakes 987

Cereal, wheat flakes 1000

Cheese, cheddar 620

Cheese, processed 1189

Cheese, cottage 406

Cheese, cream 296

Cheese, mozzarella 373

Cheese, parmesan 1862

Cheese, swiss 260

Chili con carne, canned with beans

531

Chili powder with seasonings

1574

Cocoa processed 717

Cookies, plain 365

Crab meat, canned 1000

Crackers, graham 670

Crackers, saltine 1100

Donuts 500

Lasagna 490

Macaroni with cheese 543

Margarine 987

Milk, dried 549

Muffins, plain 441

Mushrooms, canned 400

Mustard, prepared yellow 1252

Olives, green 2400

Pancakes 425

Peanuts, roasted and salted 418

Peanut butter 607

Pickles, dill 1428

Pickles, relish, sweet 712

Pie 250 to 450

Pie crust, baked 617

Pizza, cheese 702

Popcorn, salted with oil Up to 1940

Pork, cured ham 930

Pork, canned ham 1100

Potato chips, Up to 1000

Pretzels 1680

Rolls, bread or sweet 400 to 550

Rye wafers 882

Salad dressing 700 to 1300

Sardines, canned 400

Sauerkraut 747

Sausage, pork 958

Sausage, frankfurter 1100

Sausage, bologna 1300

Soup, canned 350 to 950

Spaghetti with meatballs, canned 488

Tomato ketchup 1042

Tomato juice, canned 827

Tuna in oil 800

Waffles 475

Wheat germ 200

1 tsp Salt = 2400 mg sodium

1 tsp baking soda = 1000 mg sodium