Maxine

Thanks Sophia-- I've been watching this thread hoping to hear how she did with her surgery. I'm glad she came throught the surgery OK, and I will keep poohbear in my thoughts and prayers for a successful recovery without complications. Sending HUGS to you Poohbear------------- Maxine :0)

Today I went out for a brief errand-----one to get my husband something for valentines day at our local Hallmark, and then two doors down from there is a Kroger---grocery store, I went in to get some cash, and a bottled water. We have a snow storm, and I thought I better get out before it gets out of control. It's really cold---about 14 degrees. After going to Hallmark I was trying to decide if I should walk down to Kroger, or get my car and park closer. I decided it would be more work to get the car and park closer because the Kroger and Hallmark only had one store between them. But with POTS that can seem a very long distance. All I did was walk down to Kroger go over to the cash registers buy a water and a bag of teddy grams---and get the cash. I headed for the door, and thought---I'm not going to make it back to my car. I just couldn't get enoguh air. Once I got to the car I drank a lot of the water, got my bearings and drove home---less then a mile away. When I got home I saw our garbage cans blowing all over the place--(garbage day today). I dragged them back to the house------I could barely make it. Do any of you get like this----especially in the cold weather. It feels like congestive heart failure---like there is no air, or enough blood to pump. Now---I know this sounds drasitc, and only a person with CHF knows what this really feels like, but I just felt 90 years old (I know I don't have CHF). My spine has been giving me extra problems lately, and it seems the more pain I'm in the worse my other symptoms get---even when I take something for the pain. I just get very weak. I'm using ICE and tylenol for the pain, and of course either wear my hard cervical collar, or lay down to get the weight of my head off my neck. I don't tolerate pain meds well, but thinking of trying ultram to see if I can tolerate that. I'm waiting for this bad weather to pass. It's so frustrating how sensitive our bodies are----it makes it difficult to get treatment to help us feel better. Maxine :0)

I also have this feeling from time to time. I take it as a warning to listen to my body, and take extra good care of myself. I absolutely hate it----- I hope this passes for you soon---------they usually pass, as they tend to come in cycles. Big Hug to ya.. Maxine :0)

See the post I have on the EDS article---I posted it last night. Unfortunatle it's the full article---not the link to it, as this is the way I received it from another source. It has lot's of good information---and it has information on how EDS can affect our digestive system. Maxine :0)

Thanks again for all the information-------------- Dizz, I went for the c-pap study and I couldn't tolerate any of the masks. However, If I can get the gel mask that goes over the nose it should work out. I almost tolerated the nose mask during the study but it was on so tight it bruised the area around my nose from the pressure. I was sore for a few days. Dizz----your so nice---thanks for the info............ During the study I had just started to doze, and apparently I started to have a respiratory episode and they adjusted the air flow too quickly and it exploded out my mouth and woke me up. Then the mask got so painful I couldn't complete the study. The other two masks--the one over the mouth and nose, and the one that has two little plugs that go into the nose were not tolerable at all. I still need to go and complete the study to get the c-pap machine. I need to be fitted. I'll probably go with a mattress topper, or if we have enough money I'll get the other mattress from the link you sent me Nina--- Nice of you to look that up for me-- Thanks to you too Mkoven -------------I have a soft cervical collar, but I need a new one. It just stinks that we have so much slipping................... Thanks again, Maxine :0)

Thanks for the information girls...... I'll have to look for the guarantee Lois-----------I don't think it is any good now, but it can't hurt to check it out-- Maxine :0)

Thanks Nina and Lois-- We talked about a mattress topper----------and this is something affordable--- However, I'm not so sure about our bed---it sags. It's only abut 3 years old, and we are really disappointed with it. It's a pillow topper, but we were not told that the mattress could not be turned------dumb consumer on our part. We just didn't think. We usually know better. I'm one of those who is so careful usually---------- Well is good the hear you thought the mattress topper was awesome. It makes me feel more confident about buying one-------------------It's probably our only option right now----money is tight Lois, I had to sleep on a firm mattress during my sleep study----it was terrible. I'm glad your mattress has worked out for you.-- Maxine :0)

HI ------- I can't believe it, but my EDS seems to be progressing so quickly. After the geneticist confirmed the diagnosis I asked him several questions, and one of them being: why does this seem to be progressng so quickly in the last couple of years? He said I had it all my life--it's genetic, and that I'm getting older and I'll have more pain and tolerate gravity less then I did when I was younger. He said the surgery on my spine secured the middle part of my neck--c-5,6, and 7 with a titanium plate, so the areas above it and below it are worked harder, and because of the EDS will become more unstable. My spine is affected a lot from the EDS, along with my shoulders. My whole body is affected, but this is the most noticable area affected when I try to sleep. NOW THE QUESTION--------------------how and the heck do you sleep? I can't sleep on either side-- everything is too loose, and I end up in so much pain. A friend of mine from NY who has EDS said she has a Tempur-Pedic Bed. But--------------------they cost a whopping $1800.00 for a queen which is the same size we have. I need to sleep on something that absorbs my body better. I can't sleep with my husband---I keep him awake...............If it's not from tossing an turning from the EDS/spine issues, it's the sleep apnea, although he rarely hears me snore, I just wake up when I stop breathing---then more tossing and turning. Now I know why my hair looks like someone came in the middle of the night and messed up my hair. Maxine :0)

The Doctor doing my colonoscopy won't do the prep without putting me in the hospital. She also said she won't do the colonoscopy without doing in in a trauma care hospital---(that surprised me)---probably due to my extreme sensitivities to drugs, low blood pressue from the POTS, and my recent diagnoses of sleep apnea---------which could be caused from the pressure on my brain stem, as I had over 51 respiratory episodes in three hours during my sleep. Respiratory issues and sedation drugs are not a good mix. I was lucky in that my blood pressure dropped in her office to 80/50s, and she said she wanted to contact Dr. Grubb's office. So far she has not been able to reach Dr. Grubb. I called her office last week, but so far I haven't heard from them which is unusual, because they always call back. I must have gotten lost in the shuffle---I'll try them again. I was told by this Doc that the drugs we take to control our symptoms are most likely not absorbed during the prep because they pass too quickly through the small intestine where the drugs are metabolized. She said my drugs will be given via IV. So far I have been waiting a year to get this done----------partially my fault, being overwhelmed with other medical appointments. My brother was diagnosed with colon cancer last year, and the whole family has to have a colonoscopy. I want to just get it over with now.--- Maxine :0)

Poohbear, I just want you to know I'm praying for you. I have not been posting as much lately, but wanted to let you know I read all the updates on you, and continue to think of you often. Wishing you healing energies----good luck on your surgery tomorrow----------------- Continue to hang in there Dear. HUGS, Maxine :0)

Melissa, I hope each day brings you more healing-------- You still remain in my thoughts and prayers. HUGS, Maxine

Melissa you continue to be in my thoughts and prayers for healing. I hope the placement of the J-tube in your abdomin helps clear anything in your small intestine that doesn't belong there--and hopefully this will help improve your motility. Keep hanging in there------------------------your loved by many, and were all rooting for you to have the stength to get through this. BIG HUGS, Maxine :0)

Welcome Liz-- POTS can be mild, moderate, and severely disabling. I felt pretty "normal" until late 2000. All I had before that was heart related symptoms, and was put on beta blockers for that. I am not able to go off the beta blockers, or my tachycardia will be severe. I still get break through tachycardia even on the beta blockers, but not as bad as some of the other people I know who have POTS and other forms of ANS dysfunction. In Dec. 2000 I crashed really bad, but did not get diagnosed with POTS until June 2001. However, my TTT came out normal----my increase in HR, and decrease in BP was delayed because of my beta blockers. I can not go off them---- Dr. Grubb still diagnosed POTS. I didn't think I was like a lot of folks on here who have OI, near syncope, and blood pooling----especially blood pooling------I was in denial about that until the EDS doctor explained it to me, I had never looked at my legs to see------and I have bad blood pooling. My symptoms come with gravity, the longer I'm up and about, the worse I get-------------I have other complications as you can see on my signature line. It's hard because one minute I can feel close to normal, the next I'll feel like you know what---kind of like I've been hit by a train. Then I'm trying to figure out how this happened so quickly. I certainly hope that your symptoms remain mild like they are now---and that is possible that you may not get worse. I'm sorry about your brothers ---You still should be checked often for coronary artery disease with your family history------but I'm sure you already know this. This stuff can be really confusing-------it sounds like you have a good doctor who wants to help you when you need it. Maxine :0)

Sounds like they are doing a good job trying to help you get a handle on what's going on with your body. Good luck Tearose---------------you continue to hang in there and find some answers. I hope this will help you get better treatments to help your function levels improve. BIG HUGS-------------------------------------- Maxine :0)

Lauren, It sounds like you have a plan-- I'm glad you have a little more time to get things in place. Things are looking a little more sunny for you----------- . I wish you all the best----- HUGS, Maxine :0)

Oh my goodness ami---------------what a crazy thing that was. Now if that were true, could you imagine the pharmaceutical companies that advertise their antibiotics going wild on that one? Could you imagine the advertisements for this new fangled syndrome. I'm sure if this were even remotely possible we would all be hearing about it from CNN--- LOL I'm glad your son is doing better-----and praying he stayes that way. Take Care, Maxine :0)

HAPPY BIRTHDAY MY FRIEND! Maxine--------------------------------------------

Here's a couple of links to help you----and you can also do a search under marfans or EDS, as I know there have been many postings on this. I have EDS type III---but most geneticists call it "joint hyper mobility" EDS now----I also have vascular and skin involvement. http://www.ednf.org/ http://www.marfan.org/nmf/index.jsp I hope this helps a bit--- Maxine :0)

I can stand for about a half hour, but generally I start feeling sick after a few minutes. I'm just used to it, and I push myself on a good day, but if I'm not careful and push too far, I'll crash suddenly and the floor starts moving, I lose my balance, weakness, and feel like gravity is pulling me down. If I don't sit I'll get near syncope. The fatigue is always there for the most part no matter what position I'm in. Laying down is the only thing that fixes that. Moving doesn't help much as the gravity issues get worse the faster I try to move, then my heart works harder when my blood is pooling. There are days when I don't venture out at all because just standing 5 minutes will be too much. The gravity is so intense it's unbelievable. If I sit too long I feel sick also. Stress makes it all worse. Maxine :0)

I'm sorry MomtoGiualina--------What a nice picture, and how sweet they look together. One of my Cats is getting old-----14 this year, but she shows no signs of slowing down yet-- We dearly love all our animals---India who is 7 years old, and Spencer, my other Cat who is 2---and of course Samantha. We lost Maxine a couple years ago ------our first Cat together, she was 15 and had a stroke. It was hard, but we knew she needed to be at peace. It was my husbands first pet, and he had a really hard time. I know your doggie is in a happier place now------no longer suffering. Sending you HUGS

Melissa-----I hope your throat feels better soon and your back to talking in no time--- I'm so sorry you have to deal with that tube, but the tube can be a good thing in the long run. My mother had one once---as she also has gastroparesis secondary to diabetic neuropathy. Melissa, I hope the gastric nasal tube helps you feel better. Sending you prayers and healing wishes. Maxine :0)

Sometimes you just have to have a sense of humor---- Very Funny--------- Thanks Tearose-----------

nikigrl8883, A lot of these things happening with your heart are pretty common with POTS/ANS dysfucntion. They can be very scary sometimes. It's best to check with your doctor, and make sure this is related to your POTS. You can have longer term monitors like dizzy girl mentioned to rule out anything serious. I had a lot of these weird flip flop beats, feeling of my heart stopping, tachy ect. more often in the beginning when I crashed. I still get the tachy, but my implantable cardiac loop recorder has shown nothing other then tachycardia, and ectopic beats, single PVCs. Those episodes that happen every once in a while---where I grey out, and it feels like my heart drops into my gut have not happened since I had this loop recorder put in----DANG---FIGURES. Anyway---the majority of us have all kinds of crazy weird things that happens to our hearts. Try to relax a little, and talk with your doctor about a longer term event recorder. I know the relaxing part is easier said then done------------I have been there, but the more anxious I got, the more it aggravated my spells. Sending you a big fat hug--------------- Maxine :0)

Hi folks----I have some good news for a change. All the stuff that has going wrong---and the POTS acting up along with my other problems has been a bear to deal with. But the worst thing was worrying about other problems on top of that. With all my pain in my upper back---it often spreads to my clavicle and chest leaving me to wonder if its my heart. I have had low HDL (the good cholesterol) for years--normal LDL, and fairly high triclycerides---(hereditary). Anyway I was scheduled for a cardiac CT scan with the newer 64 slice CTs. Well they couldn't get my heart rate down for part of the scan, but we were able to get the calcium scoring in the arteries done. The results were sent to Dr. Grubb's office, and to my PCP. A nice nurse from Dr. Grubb's office called and said Dr. Grubb looked at it, and said my score was 0-----------meaning no calcium bulid up in the arteries. WOW----------what a happy surprise! I told her I love you guys----------you made my day! I think It creeped her out a bit---LOL, but that's OK, this is one thing to check off my list. This test does not see soft plaque in the arteries--------this was the other part I couldn't get through because of the high heart rate. But this kind of test I was able to get through is a good indicator if you have coronary artery disease. Complimented with a stress echo---should clear me completely, but Dr. Grubb didn't mention a need for that. I had one two years ago---------- Meanwhile, I'll continue on my low dose crestor, and 81mgs of asprin. I was so surprised my score was 0------------------------ Thought I would share something happy------------- Maxine :0)

Jacquie, Trying to get the right hand to know what the left hand is doing in some of these medical offices is something isn't it------------------ I hope they get something straight for you soon---and you can get some answers on your digestive issues. Nausea is the worst---------------can't do anything with this. I'm sorry that your not feeling well. Eating small meals is a big help. When I eat a big meal I end up a wreck. Small healthy meals......... Avoid fruit with thick skins, corn ect. Eat fiber that is kinder to your insides---e.i.----> cooked vegetables like broccli, green beans, canned peas, carrots, pears with thin skins--(bosc), bran cereal, whole wheat breads---(avoid seeded breads). I hope you feel better soon---------- HUGS Maxine :0)