issie

I go real brady at night. Do you take the Klonopin with the Propronolol or at a different time? What strength is it? Do you feel weird or drugged on them?

Has the propranolol slowed your pulse down too much? When I tried beta blockers, that's what happened. I didn't do well on the Florineff either, it gave me really bad miagraines. The thought was to use both, but that couldn't happen. One doctor that I saw last, said he thought I should try propranolol but I haven't found a doctor yet, in order to try it. Do you take really small amounts. How do you take your meds. What do they do and what does it help? Getting ready to start the doctor search again.

What are your tremors like. I have them too. At first I was diagnosised with Parkinsons. Are your tremors like that? It's mostly on one side of my body and my head, although both legs will do it. Do you also have gait issues? I also have the narrow BP's sometimes only about 10 points difference. My mother in law, who used to be a nurse, said that that is very dangerous and a sign of a possible heart attack issue. What do you know about it?

So, you still don't know what it means? That's so frustrating!!!! They all do the speculation of possibilities no matter where you go or where you live. It's then up to the doctor to determine which of these is the correct one with more diagnostics. Are you still in Phoenix at the Mayo?

It might be what the D is in or from what source it is made. You could be having allergy reactions to either of those. The best form is D3. I react to nearly everything and the one I can use is by Now the source is Lanolin in an olive oil base and gelatin cap. So far, so good. I'm on either 6,000 to 10,000 per day. One amount one day and the other about every 3 days. I'm starting to not hurt so bad. I've been doing this amount for about 4 months now. So, it's taken awhile to tell a difference. Sophie, I have the same issues with calcium. Finally found one that I'm doing great with. I've increased my bone density with it too. (The D could be helping this too.) It's Osteoprime Forte by integrative therapeutics. I didn't get the plus one because of the ingredients. I'm only taking half of the recommended serving amount, but that's more than I was taking and seem to be tolerating that amount good. I've tried every kind of calcium there is and this is the only one I've felt that I can do with no problems.

Well, I heard from my niece and she said her doc. isn't a specialist and has directions from mayo as to how to treat her. She didn't feel that her doc would be of any help to you and didn't give me her name. Sorry ---- I tried. The other thought is the doctor down in Pensacola, FL. That would be the next closest or Mayo in Rochchester, MN or Jacksonville, FL.

Thank you for posting that article. There are many of us with FMS and it's good that medical science is finally acknowledging the fact of is reality. We know of it's reality it's with us on a daily basis.

I'm sooooooo very sorry for what you've been through. All I could do is shake my head and say OMG that poor girl. You are not too far from B'ham, AL and there is a doctor there that my niece in law goes to, she has POTS too. We're not related -- what kind of chance is it that there would be two potsies in a family. I will try to find out who she sees. She seems to like him pretty well. You might look up the doctors listed on the site for B'ham. It's about a 2 hr. drive for you. If nothing else maybe an ambulance ride, maybe someone has a van you could lie down in. I'm hoping for you to get some help. I thought I was gun-shy of the doctors. I had no idea that our POTS could give us a heart attack. We're supposed to have good strong hearts. I'll e-mail her right now.

Dani, You could be reacting to an adrenal surge that you created by running up the stairs. Too much adrenaline and our body over reacts to it.

We all are so unique and what will work for one may not work for another. A lot of it is trial and error. More error, and more error. But, the only way to know what will work for you is to try it. We all seem to be super sensitive to meds and even a tiny amount may be all we need. The Florineff helps you to hold on to the salt and therefore the fluid. We seem to dehydrate more than usual. Also the beta blockers helps with the tachycardia. Sometimes the Florineff will raise the BP too much and the beta blockers lowers the BP. So, it's a balancing act to get the two correct and working the way you want them to. Depending on whether or not you have the hyper type of POTS, makes a difference as to which kinds of medicine you try. I've tried both of those and couldn't do either one. The Florineff made my migagraines worse and the beta blockers lowered my BP too much and caused the Brady to be unbearable. So, at present, I do alot of natural things and havent yet jumped back on the medicine-go-round. As far as how long, no one really knows. It is real important to try to keep yourself at least sitting upright. If you lie down all the time, it will get where your body won't regulate itself with an upright position. If nothing else, sit in a recliner. Keep your feet up because it helps with the circulation in the legs. Compression of the legs and abdoman helps a whole lot. We have alot of blood pooling and if you can get the circulation to be better, you'll be ahead. There are suggestions of sitting in place and doing toe raises to pump the calves to keep the circulation going. Also, sit in a chair and just do a marching motion and pick your legs up as high as you can and put them down. That will help with circulation too. Rock in a rocking chair and alternate legs and do big rocks. Since I've been doing physical therapy for the last 2 months, my legs are getting stronger and circulation is improving. The longer I sat in the wheel chair, the worse I got. Now, it kills my back to stand because the muscles have tightened up and I've become sway backed, because of lack of use and sitting in a chair. So, now I have to work on my back strength too and stretching out the tendons that have shortened up because of lack of use. In the long run, I've made myself worse by sitting down and not trying to be up as much as I should have. It is going to be slow going and take a looooooong time to be able to be upright and walking again ---but, I'm determined it IS GOING TO HAPPEN. As far as help with supplements, I've found that Emergen C is helpful for electolyte balance and Ginger and Tumeric for pain. The Omega 3's help with pain and hydration too. I was also found to be very deficient in Vit D and have to take massive doses to get it up and that has helped with my bone pain. My osteopenia is improved from over 2 years ago and I think the Vit D has helped that. I also use alot of hemopathy and find that to help with pain and anxiety. I recently started using one for insomnia and am getting good results with it. The other new thing I'm using is Kelp and that has a natural iodine in it and it seems to be helping with my fatigue. It will help regulate your thyroid. I also have added HCI and pepsin. There are studies showing that a lack of stomach acid may be the cause of alot of issues that could apply to POTS patients. (Gastro issues, allergies, vitiligo, miagraines etc.) There's lots more I do, but these are the ones that I think have made the most difference. I also use full body compression with thigh hi's and additional long leg pants (like a slimmer) and a tank (slimmer) and sometimes one of those exercise abdominal binders. It helps keep me from swelling so bad and keeps my circulation some better. Hope this helps some. If you need more info -----just ask.

You poor thing!!!! I feel so bad for you. Are you feeling any better now? I knew the autonomic system did terrible things to us, but never guessed that it could cause a heart attack. They always tell us our hearts are strong. That's really scarry, so many times I have the symptoms of a heart attack and ignore it thinking it's just the POTS. Maybe I should pay more attention. I do believe that alot of our issues could be inflamation. If started using Ginger and Tumeric for that. I don't hurt near as bad. I can sympathize with you on the foot issue. I'm recovering from breaking my foot off my leg. You are getting your physical therapy cheap -- mine is $221.00 a visit and that's the going rate here. I'm the one doing the work and all they do is massage my foot and leg to loosen it up and try to get the tendons not to rip. (They are all screwed down with screws though, but they shorten up.) I've started rolling my foot on one of those dryer balls with the little knobby things on them. That helps a whole lot to loosen up the bottom of your foot. I'm just starting to walk again and it is hard. My POTS is worse than ever, partly because of having to be in a chair and not walking for 4 months. Every time I stand up, OMG. And then my back KILLS me if I stand for very long. I'm not used to using the muscles in my back and I've gotten sway backed from sitting for so long. Having to stretch out the muscles in my back. They do not want to release or elongate. It's a vicious cycle and circle. It will just take time. Here's hoping for you a speedy recovery. Just be patient, your foot will get better. Remember, one day at a time, one minute at a time and tommorrow is another beautiful day --- WE HAVE LIFE!!! One day, we'll be able to live it to the full.

Just wanted to welcome you in. I don't have seizures like you, but do have the tremors and Parkinson's like gait. It will come and go. Certain lights will bring it on too. I can't stand WalMart because of the lights. I was at first diagnosised with Parkinson's and treated as such for over a year and a half. When that didn't get better or the meds didn't help they then thought I had Multiple System Atrophy. That's when we went to Mayo and got the POTS diagnosis. Still don't really know why the tremors or gait disorder. I practically drag one leg at times, it won't pick up. It takes me days to get over one of these eposoids. It totally wipes me out. So you're not alone, but I don't have an answer either. I figured it was the autonomic nervous system misfiring and it was just affecting these areas of my body. I also do the stare thing and can't talk straight. I sound like I'm drunk or something and can't come up with the right words. The only thing they found was a brain tumor on the lining of the brain and said it shouldn't be what is causing it, but they are watching it to see if it changes or gets bigger. I've also had two TIA's and that really impacted me. It messed up my ability to do math. These of course don't show up on an MRI, but are indicative of a possible stroke that some day WILL show up. I also have Ehlers Danlos and my circulation is awful, so I'm sure that affects the blood to my brain too, not to mention my oxygen levels. Don't know if this helps any or not. Just hoping something will trigger a thought and something that could be looked at with you.

Haven't tried that. Don't think they have tried me on anything to constrict. I do have EDS and lots of blood pooling. Had leg vein surgery when I was 26 due to terrible varicose veins. They didn't strip them because I was so young, but took the parts of the varicose out - they said it was like cutting branches of a tree off, not cutting the tree down. Would that help with the fluid build up?

Not really sure what I mean. My hands are dry and the skin on my hands will stand up, like dehydration. But my abdomen and feet and legs will be swollen with fluid -- I guess it's fluid. I can gain 10 lbs. in one day. To me, I feel dehydrated but at the same time drowning. If I drink a G2 I taste salt for nearly the whole day. Like my body is swimming in salt. My test, like I said, showed too high sodium --- even though at the time I wasn't using extra salt or Florineff. Not sure what the issues are. Trying to figure it out.

NO PROBLEMS -- I appreciate the input.

Okay, so what do you do to retain the salt, get the water to go into the cells (so you're not a water ballon ready to burst) and feel and get hydrated when you feel dehydrated ALLL the time?

I tried it Issie. It didn't work. Only the mix of antibiotics finally worked. But, did you take enough of it. It's like 4 caps 3 to 4 times a day. Sometimes, it takes longer with herbs and with a real BIG problem, it takes massive amounts.

Sodium levels are too high.

But what if you were spilling sodium and not using extra salt or on meds?

Oh yeah, we did have a discussion about this a while back. You might do a search. No one really came up with an answer to this. I'm so thin that I'm searching out a wig or toupe or something. I tried coloring my hair, because it is supposed to plump it up and make it look thicker. But, it really didn't help that much. Also, saw a hair loss doctor and they recommended a laser brush and Men's Cream forumula of Midoxidil -- the strongest one available. Because of the possibility of it causing BP issues, I didn't try that. But, I did get the brush. Haven't used it long enough to know if it's going to make a difference.

cindibee, I'm sure nowhat, will reply -- but she is at the Mayo this week. I think she is finding some answers. Waiting for her post of all the things done and explained. Maybe we all will benefit from what she finds out. By the way, WELCOME to our group. It really is a knowledgeable bunch. Hoping to sort it all out and get solutions. Issie

Yeah, I know -- that's why the other suggestion for the natural antibiotic --Olive Leaf.

So, you could spill sodium into your urine, even IF you hadn't upped your salt intake or been on Florineff if your renin and aldosterone were low? I wasn't doing the extra salt or meds when tested last. Thanks for explaining!!

Maybe just say, "Your get up and go just got up and went." The other example would be, "My car was going strong and out of the blue ran out of gas." By the way --- I have this issue too. I think it's related to adrenal function.

Question. I know I have low blood volume and severe pooling issues. Also, when a sodium check is done it is always too high. What could this be indicative of. I also have POTS, the hyper kind. My jump from lying to standing is always between 40 and 70 point pulse jump. Yet, I feel totally dehydrated all the time. It doesn't matter how much I drink. And, I'm not diabetic.