OCsunshine

So my doctor did this "hair tests" on me. They scraped a bunch of hair off the back of my head, sent it to a special lab, and it tests the levels of toxic metals and also essential elements. My "toxic metals" looked pretty good, everything was in the safe zone. Nickel was slightly high, but still in the safe zone barely (my doc said maybe it's from jewelry). As for the essential elements, some of them were VERY off. The one that was the worst was "MANGANESE" which I had never even heard of before. ??? Apparently you're supposed to have some, but too much can be toxic. Well I have a LOT of it in me, according to this text. I was off the charts. So the info I have read says you can get toxic levels of Manganese by being a miner or a welder and stuff like that, or it can be in the ground at a waste dump, etc etc... well none of those concerns apply to me so... what the heck..?? The symptoms of High Levels of Manganese sound pretty scary, and some of them somewhat familiar. My doctor said he doesn't know why I have these levels. He checked my kidney and liver functions with bloodwork, and they look good. Have any of you all heard of this? Wonder if I should be concerned....

I do understand the panic. Yikes!! I am very sensitive to meds and most generic meds don't work for me. However, I have taken the generic florinef in the past and have noticed no problems. So, there's an ounce of encouragement for ya!

I don't have any good ideas, but just thought I'd share that I totally understand. I also have so much trouble in the morning... just walking from the bed to the bathroom can get my heartrate all messed up and I feel the THUMP THUMP if I don't get my beta blocker in my system IMMEDIATELY. Sometimes I put my beta blocker on my nightstand and I take that about 1/2 hour before I even need to get up out of bed. Other than that small idea, I don't know any way to make mornings easier. I just hate them altogether.

Well I think this just depends on what you do to KEEP from fainting. If you can stay standing up and your BP corrects itself, that's pretty normal and most women have that "whooeeyyyy" lightheaded feeling after standing up, feel a little loopey, and then after like 2 or 3 seconds, it's corrected and they are fine standing up. With NMH/NCS, however, our bodies don't correct the problem. I used to faint (completely black out/unconscious) quite often in my first years of having this illness. Now I rarely faint completely, BUT it's because I can prevent it. I do feel lightheaded and can't stand up for very long, but I feel the warning signs, so I sit down or lay down RIGHT THEN and I don't faint. So, just because I don't faint much now (or if I didn't faint at all) that doesn't mean I don't have NMH anymore. That just means I am learning to prevent the fainting and have to be very careful about paying attention to what my body needs. So I still have to lay flat out- but I can stay conscious b/c of prevention measures I take. Does this make sense... ? Hope so It's late...

Okay so I recently read in Prevention Magazine something about "Butterbur" ??? It's supposedly some remedy for migraines, and it also helps with allergy symptoms? I Googled it, and the articles I found say that it keeps blood vessels from inflaming (therefore helping migraines) and it helps reduce sinus/allergy problems. If this is true and it works, I am going to do a little happy dance?!?! So... what's the deal? Has anyone tried it? I would obviously ask my doctor before I took it, but I wanted some input on what anyone thought about it???? (I went to the organic store today, which usually has EVERYTHING, but they didn't know about Butterbur and it wasn't in their books, they said they couldn't order it... but I googled it and there are tons of sites about it) Can't wait to hear some responses!!!

(I thought this was a common topic on here, so I tried to search for it but no results were found.) How many of you use Sea Salt? What kind do you use? What brand name, or what about it is unique? How do you use it- in cooking? As seasoning on foods? Does it help raise your Blood Pressure like the normal 'salt' I eat now? Why is Sea Salt "special" and different? (I bought some today, but realized you can spend from $4 up to $44 on a small package of it!!!) I bought the cheap stuff, hoping to get more information before I shell out more cash) !!!!

It is VERY common for Barium (the lovely drink that it is) to stop you up and really constipate you. It's very, very important that you drink a lot and treat the constipation. Yes, maybe fiber or some kind of laxative? I'm not sure (ask your doctor), but that is probably the problem since it's very common. I was just told to DRINK A LOT after the barium and I have never had a problem.

I did the exact same thing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I was on florinef for over a decade, taking 1/2 pill (.05mg) daily. I wanted to wean off my meds to see if I still needed them, and after a week of being on NO florinef, I felt AWFUL. My headaches increased, my heart rate was all out of whack, I really couldn't function at ALL. So I got over my pride and went back on the florinef, but now I'm doing 'okay' by taking only 1/2 pill twice a week. I'm happy that my dose is lower, but obviously my body still needs that small amount. Thanks for this post!!!

So just last week this new thing started. I thought I had like Athlete's Foot or something (!?!) and then I realized my feet and my lower legs were itching towards the end of a shower, so I thought maybe it was the hot water's fault so I have dry skin. THEN I noticed it happening as I stood at the door to let my doggie outside to tinkle. So now I realize, when I stand up for a few minutes (when I am able to) my feet and lower legs get REALLY scratchy and tingly. I can only guess it's the blood sinking down there? Something to do with circulation? I mean, I'm not worried, I know it's a fact of NMH... I was just wondering why it would make my skin ITCH so bad!!! It happened before when we didn't own a dishwasher and I would try to stand up and wash dishes when I felt really good. My lower legs got SO itchy I thought I had ants crawling on me, which I didn't (ew gross), and then I took my cleaning supplies out of under the sink cabinet b/c I thought I was having an allergic reaction to some chemical under there. Good grief. Anyway, anybody else get REALLY ITCHY when they try to stand up for short tasks? Why would the blood sinking down there make your skin itch so bad?

Oh Katherine ((((((HUGS))))) I know how hard it is to lose a dog- a faithful friend, a family member. It's heartbreaking. Making the decision is an incredibly hard thing to do, but thank you for being a responsible pet owner. My cousin works at a major vet hospital in Miami, and she knows how hard it is to make that sad decision, but she really praises the loving pet owners that do it and are responsible to not let the dog suffer any longer. I'm sure Sabine had a long, wonderful, happy life. (((HUGS))) again. Give Guiliana lots of hugs, too!!

Well, in ABC's defense, they did point out that this "gary stretch" guy seemed to be 'mocking' the disease. And they DID show him putting on morphine patches b/c his joint pain is so intense (due to EDS). They also showed a 19 year old "normal" guy who didn't have the "skin stretch" symptom, but had loose joints and severe pain and he was disabled by it. In the beginning they mentioned the 3 ways it affects the body- stretchy skin, loose joints, loose vessels. I have loose joints and loose vessels (Hopkins found this out years ago and explained why this exacerbated my Orthostatic Intolerance). Why didn't Primetime show someone with loose vessels? Maybe they could have then mentioned Orthostatic Intolerance, you know? (Being that if your veins are loose and stretchy, your blood pools into your feet and hands, causing black outs b/c blood is not up in your vital organs where it needs to be). That's my problem. I was bummed they didn't go into that subject. Any other thoughts??

YES i am always low on potassium. However I am also on florinef which depletes me on potassium. Right now I'm on an extremely low dose of florinef (.05 mg twice a week) and I still have to take 20-40 MEQ of Potassium daily to keep my levels in the safe range. Oh and I can tell when my body gets too low on Potassium... my chest feels tight and it feels like a small heart attack, really. Supposedly you don't have to worry much about taking a bit too much potassium because the extra will be removed from the body through your urine.

I have found great success with florinef. Being on it actually decreases my migraines/headaches and I really can't function without it. I have found a successful combination with florinef and a beta blocker. It does take a lot of trial & error... give meds time to work and give your body time to adjust. Sometimes the first week or two can be rough but things can get better once the med starts to work correctly (that's just my experience). Different combos work for different people.

That is great! Exciting! Who knew that one day we'd all be so grateful to a Yellow Wiggle!! :-D

Thanks so much for posting this article, I just sent it to my family and friends. I find this to be a SUPER example of a healthy active guy who loves his job, seems to be in shape, and loves life... and he is knocked down by this illness. I feel TERRIBLE for him to have to suffer through this, BUT I am anxious to see how this pans out as far as awareness and understanding with the general public. Maybe Greg Page will join our discussion board. ;-)