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I wasn't sure I had POTS either honestly. But I was totally away from this forum and really all POTS "talk". Coming back almost a year later and 3 1/2 years into my symptoms I tend to line up with so much of what you all talk about. The lastest being the cognitive issues I notice and now it looks like my anemia might be related too. So POTS seems to fit until I'm told otherwise. I never had the tilt I was too scared. My heart felt too fragile. I was throwing PVC's like crazy and I waa scared to death I'd die right on the table.

Am I the only one that does this. It's way worse when I have to try to tell people about my illness and if I'm sitting or standing, My mind just goes blank and I can't think straight.

Looneymom thanks for pointing that out. Mine was with a virus but it came on and symptoms did not peak until much later as you mentioned and then they stayed pretty bad for maybe 6 months or longer before they gradually started letting up, I know I worked here and there about the first year and a half and then was too ill to go in at all the next six months and got the letter that I was being placed on inactive status. I was so sick I was endinng up on the floor at work or having to call the squad to come and get me at work prior to that. Just trying to be up and moving was causing my body to go into horrible crisis. So much of this has just become a blur. For one I am just trying to get through each day and symtpoms have changed over time. I've dealt with different issues also along the way and also living conditions living for 3 separate periods in with parents or in laws, i feel like I lost years of my life and I'm still only operating at a very reduced level. Maybe 20-30% of my normal.

Hey Alicia, I can relate to the issues with odors. I purchased a rabbit air filter and it helps me tremendously. It was expensive but to me to be able to feel comfortable with the air I'm breathing was important. The food sensitivity is something I have big issues with too so I think you'll have to really figure out what works for you. I would be afraid to take it but I'm wondering if a probiotic or acidophalus tablets would work just as well as the yogart for your gut. I am intolerant to milk myself. I have tried obviously cows but also soy and goat and I react in a respiratory type way.

This one has been a huge issue for me. My iron goes very low and I've required IV iron to bring it up. It tends to go in spurts where I do okay for a while and then it just starts dropping extremely low. They were really looking at it as a female problem and it was suggested I have a uterine ablation to control bleeding during menstrual periods but I really wondered if that was the source of my anemia. After reading this article I have a tendency to think it's most likely related to my POTS condition. It took them a while to find my anemia and after they did I requested to see a hematologist. I felt very very bad like I was on the verge of collapse before my first treatment and in a years time got that way again. The anemia tends to hit me in the fall for some reason I don't know why that is.

I get sore from the slightest things. Stirring the butter and egg into a cookie mix sends me into excruciating pain of the forearm and wrist. It actually feels like I sprain my wrist trying to stir. Yes it makes it difficult to exercise in the first place this is not in your head. I got sore just from operating the disability scooter from holding back the lever that makes it go. I feel like I need to wear wrist braces because my wrists feel so weak. I tried exercising with the exercise bands and after just a couple repetitive pulls it had negative cardiovascular effects. I just am not sure what we can do that would help keep our strength up without aggravating symptoms.

I filed beginning to mid July of 2011 and my trial is the second week of June so 2 years from start to trial here. I contacted an attorney before I ever filed and followed their instructions. They met with me in office then after my second denial I believe. They said it usually takes 6 weeks to get an answer. If I have to appeal that I have no idea how long that process takes or if the same attorney is willing to represent me or not. This is just something I have no experience with.

I've felt that with my doctor that I come on too strong for her and she dislikes it and that I might get more help from her if I made her feel like she was in charge and I was actually looking to her for answers instead of throwing out things that I know she can't answer. I think when I do that we just both leave the visit somewhat frustrated with no real meaning or progress to the visit. Also I like Dr. Rob's effort to bridge the gap but I think I am usually more impressed by health care providers that have actually suffered with disease. As a nurse in long term health care for 20 years I was so ignorant and nieve to people's pain, weakness, frailty for all that time. I knew it was there. It's not that I denied it I didn't understand it. It wasn't my job too. I walked in tried to say something cheerful did my assessment and yes tried to take whatever intervention to relieve suffering but I was so far removed with what that person was feeling. I was in my own healthy world where I had no clue what those things felt like and what impact they have on the body. I would get compassion yes and my heart would sink when I saw certain things but it was from a different standpoint of just watching a person suffer rather than having any clue what it felt like. What could I have done different maybe not much. Except I just would have been a little more understanding of how difficult it was. Maybe everyone is not like me. I get that. But I had no clue whatsoever. And many times now that's how I see my own health care providers. They are living their lives as they should in their own reality that does not understand mine.

Hey blue, I am allergic to trees, grass, and all farm pollen. I do okay usually being outside unless someone is mowing etc. If I'm driving by a farm and they are harvesting I just roll up my windows, Where we were living before we were nestled in trees. They wrapped around us with a lot of fallen stuff that was growing a type of mold that happens ith decay. I did not do well there at all. We still have trees here but they don't wrap around the house.

Awesome Dani! I'm glad it went well for you.

I was only starting to go out. She had me doing it here at home on my own with a cd and she did it the one time in her office. I am not sure she is skilled in this area. That is why I think going to an expert like you are doing may end up being a totally different experience for you. I really didn't think it was for me the way it was conducted but it could have been her technique that didn't work for me.

Thank you for this list. I checked all but two and added about 8 and took it to my doctors appt. she is using it to update her notes that she sent into disability on me. Wow! The way my mind skips around I'm not sure I could have come up with this list on my own yet I either have now or have experienced all the symptoms listed except about 2.

I need help in this area. No experience with it yet. I developed huge issues with food along with my POTS and weight loss and it still continues to be a big problem for me. My problem is my allergies. The enteral and parenteral products both contain corn by products and I am very allergic. If that wasn't the case I would have opted for that. I am either not absorbing or just not getting in enough calories and feel malnourished most of the time. I think nutrition is going to be my next area I try to explore once the disability hearing is over and decided. I'm hoping for the resources to do that. I'd be interested in hearing what ends up working for you.

I really think it's worth a shot dani. Worst case that type of reaction was not that horribly awful compared to what we go through with our horrible POTS episodes. It's totally worth giving it a try just in case in would help you.

My neuropsychologist has tried hypnotherapy with me. I have a problem with becoming totally disoriented during it and really freaking out. Afterwards also I would get this feeling that someone was taking my head and jerking it quickly to the side. My vision would also blip out and rotate with that sensation. Like they show in the movies when one guy is breaking another's neck? It was so horrible it made me scream right outloud and happened for maybe 2-3 days after along with a feeling that I wasn't totally conscious. I joked with her after when she said yes some people get a paradoxical reaction to it that if there is some negative side effect possible I seem to always experience it and that if I could get over that at some point and my body would simply allow some form of treatment I might actually get relief of some of my symptoms. Good luck dani. I hope it works for you.

Congrats Kateybug I'm so happy for you. I'd love to have details. I'll pm you my email and phone no.

I've had issues with this also where I have actually lost my swallow for a few seconds and this other odd issue with flipping the food right down the back of my throat inadvertently. Scary! I was always afraid it would end up in my lungs and I'd get aspiration pnemonia. I'd be on high alert for about the next five days expecting fever etc. It never happened and the swallowing got a bit better not worse. I've learned to hack things up when this happens. I also have things sometimes stick in my esophagus where it feels like peristalsis of the food down to the stomach just isn't happening. It sometimes gravitates up instead of down. I never have choked yet thank God. Good luck to you naomi. I hope this improves for you or becomes less of an issue in time.

Thank you Sue it's good to be chatting again and thanks for the coaching on the anxiety topic. Katie I wish you the best tomorrow with your hearing. I hope it goes well and isn't too stressful for you. I've been able to find about two at a time a few foods with some carb component that I can eat alongside my meat. For a while it was great nothern beans and pears. I lost the pears first and then the great northerns. Next I was onto cabbage and reacted to that. Right now it's mung beans and celery along with then tons of Gatorade and I can drink Sierra Mist natural. The anemia comes in waves. I seem to do well for a while and then drop like a rocket out of the blue. So last visit I was up and I go back in September. I had 3 more doses of IV iron just about 6 months ago. That is stored in the bones and organs so it continues to come out and assist. It seems like just the meat and nibbles of my Flinstone vitamin isn't enough iron but I don't know. If I take too much vitamin at once I wheeze due to the corn content I would assume.

I've been reading the last day or two. I see some of the same members posting and many new. My disability hearing is coming up in two weeks so I am trying to prepare myself for that. One of the big questions all along from disability has been the anxiety component. Specifically the case manager I met with at the lawyer's office was like come on you're a nurse this sounds like anxiety don't you think? So I am trying to prepare myself to speak to that if asked by the judge and it has never felt like an easy task to try to explain POTS to anyone. I can't even really get my family members on board with understanding my limitations so I question how will I convey accurately what is going on with me to a judge. Just wanted to say hi to the new members and for the older ones let you know I am still hanging in there. I rarely have POTS episodes any more due to modifying my lifestyle so extremely. I have about 2-3 hours function per day. I am noticing a lot of the cognitive impairment now, with poor memory and difficulty with word recall. The fatigue seems comparable with acquaintances who suffer with chronic fatigue. I also am still struggling with food. Right now it's almost all meat for me and I worry about the health impact of that long term but I seem to react to all plants. I spent the first part of my life being a veggie nut and basically lived on salads. It took my body a long time to adjust to so much meat but other than being underweight and having a very low body fat component, much lower than what would seem healthy. I seem to be doing okay with the meat. I eat about a pound and a half per day to keep up with my energy requirements. OH I miss bread! And carbs in general. So much I dream about them. I've tried about all of them and react everytime. Anyway not sure how vocal I'll be but I'm here reading. Looking forward to my trial and hoping for a favorable outcome obviously.

Well it's hard not to worry because it hurts! If I am pushing the limit I will get very sharp stabs in the chest that about take my breath away. The other sign I've done too much is intense pressure in the chest that lays me out for an hour or more. It takes my breath away also. I usually have palpatations with this until it resolves and feel like I'm on my last leg. I try to accept it but it's a hopeless feeling to know you're just out of commision for probably the rest of the day. So I guess we can adjust to the fact that this is a part of our life now but dealing with pain has certain affects physically and mentally. I often wake up with it too and so the days I don't experience it I count my blessings.

That's what I was afraid of with the spiralactone. We don't need a diuretic or to lose sodium. Those were the red flags to me.

Be careful I looked it up and I'm not so sure.... Read the effects it has and I worry about use of things like this and long term effect on liver. Also maybe our levels aren't that out of wack?

Wow this is why for us ladies we get so much more symptomatic with our menstrual cycle. We have more inflammation at that time due to hormone changes/prostaglandin which cause our symptoms to go even further out of whack. This is all fitting together and makes perfect sense.

This maybe getting just a tad off topic but I've developed microcytic anemia. With 4 IV iron infusions they brought my ferritin level up to 70. In 2 months it's back down to 14.8. I just read a post from a woman who also has microcytic anemia. She said her hematologist said all of his patients with microcytic anemia had RA. I thought maybe the cause was lady problems but at the same time I question how much blood I am really losing. At times it doesn't seem that abnormal but I do have some very large clots like 5 inch. And I've lost blood and soaked through pants all the way down to knees so that does not seem normal. My plan is to have the uterine ablation to hopefully stop my blood loss and resolve the anemia but if there is an inflammatory autoimmune type process going on in my body similar to RA maybe that is the cause of the anemia. The other woman had to receive many blood transfusions and over the years her microcytic anemia resolved. I wondered if she may have received other things in with that blood that helped treat her issue similar to what we see people getting with the IVIG. Her story is her body chemistry somehow changed.

8 lb. 10 oz. 7 lb. 14. oz - this one I'm worried about he is too thin 8 lb, 10 oz. 7 lb. I think 7 oz. Also a string bean I did not necessarily have POTS during pregnancy or not to a level I noticed. I felt pretty good pregnant till the last 3 months and then I had difficulty with some swelling in legs. Feet would turn bright red in evenings when standing. Had to be careful how I laid in bed or I felt too much strain on heart. I was concerned enough about weight gain with last baby that I cut out all desserts as soon as I found out I was pregnant because I feared getting so big and miserable.