pamela

My prayers are with you during this phase of your illness and I hope things perk up for you. I have realized that My docs and I are in the barely phase one of my diagnosis and treatment. They diagnosed the POTS and Hypotension but since I tend to run really low in the pottasium level that may effec/aggrivate my symptoms. The military sent a reccomendation for me to see a neurologist 11 months ago because I complained of periodic bumbness in my arms and legs and passinfg out. To make a long story short that appt. never came and I ended up passing out in my hemotologists office and entered CCu in Charlotte NC. They diagnosed me but did not start any workups to find out what was going on. I started on Nadolol but my bp stayed below 88/55 but my heart rate was less spastic. They changed me to Metadate (rittalin type drug) and now my BP is up too much and my heart is constantly Tachy and PVC's all over the place. I currently have to go back for another echo, I just did a coratid artery ultrasound that has to be reviewed due to some left side numbers that were less than the right side. Any way I know I am new at this and I sympathize with you. THe whole confusion,speech difficulties and typing correctly *****. I would like any advice you can give. I cannot continue the metadate because of the chest pain and irratic heart rate so we are going to try something new or go back to a beta blocker. The doc is doing the best he can and being patient but I know I am driving him up the wall. Again good luck and God bless! PAm

I tried my husbands electric razor, the kind that you do not need gel or water with. I can just sit around on the couch or whereever and shave them. Of course, i should have asked, but he didn't mind as long as I remember to put it back on the charger. The good thing is no sharp razors to nick myself and that is good considering the blood thinners I am on, and my legs are smoothe and not hairy as often. He promises to get me my own for Christmas if not before.

I have Low protein S disorder along with all of this other stuff, so I clot up often. In order to prevent the blood pooling tou are suppose rest with your legs softle elevated by a pillow or towel. Don't stand in one place or wear socks that will leave aring around your calf or ankle, cold compress is used for sore spots, do not use heat as it will make any bleeding worse. Try a anti inflammatory if your doc o.k. 's it. Please gte tested for a blood clotting disorder if there are any family history of stroke, sudden heartattack, or anyone in your family that is on a bloodthinner. A lot of times no one diagnosed deaths due to bloodclot that caused a ht attack or stroke especially if the peron was older that 55. You might need to do some research. When you are off your feet do ankle rotations and flexing, bend your knees, where a light compression stocking and drink plenty of water. Good luck and keep moving those legs! Oh, and don't massage them it can make distended veins break an disclor evenmore.

Sorry that you felt out of the loop. I read some stuff about the Chari malformations but when my CT of the spine and neck were unremarkable I quit reading. I have not read your question on phelibitis but am going there now.. Now that you have met new friends don't turn into a stranger. Pam

Melly, thanks for the info concerning the epinephrine. I just remembered that it is standard to inject that mixture. That would have not been cool... Have a nice day

Now that I am deeling with the OI,OH, and POts crap my 18mo old little girl and I have a new favorite thing. We shower together. I turn on the water to the appropriate temp, put all the soap and shampoo on the floor, and we walk in and sitdown. She loves it, I love it and we wash our hair and basically run a lot of water. We only do it when I can't handle bending over the tub and lifting her. So she thinks that it's a treat. I have to stand up to turn off the water, but we have a handle on the side of wall to pull up on. Once I turn off the water we step out and sit back on the floor ro dry off.. Takes us about 20min to get all of this done and then its time for night-night. What happened to the days of closing your eyes abd tilting your head back under the hot spray of the shower?? I would pass out and probably drown.! Oh well, least there is ice cream.

Weird? I had a spot on my leg that came I noticed about a week after I was in the hospital. It was a little itchy and I scratched it. It bled like crazy(excessivly due to blood thinners). Anyhow, the ER doc and my family practice said it must have been a infected hair. 11 weeks later it is bigger and raised, thick,but does not drain, itches sometimes, but it is pale unlike a regular mole. I have two other small spots that look the same. I thought it was a keloide that I hadn't noticed. Now I wonder. I will get a second opinion. Maybe its some reaction to a common med that we are on or a skin change due to the imbalances of our minerals,hormones or stuff.... Maybe to many MRIs,Cat Scans and Xray's pamela

Hi melly (that is my sis's nickname too)! I just wanted to day hi and to put my two cents in. Migrains..have them but just get a shot off stuff at er's and fluids then I uae Benadryl. Many meds affect my blood clotting disorders and either cause me to clot or make my blood dangerously thin. About the TTT, my mom went with me and so did my husband and neither were prepared for the affect that it had on me. My mom stayed during the lay down portion, but as they raised me she had to leave because she could'nt handle the soumd of my HB and watching my BP plummet. It realyy scared her. Since I stubbornly hung on to the very end (till I passed out) it took me awhile to recover and my chest was sore from the tachy. My husband... he stayed in the waiting room. I think the effects on them were hard due to the fact that I had just gotten out of Cardiac intensive Care 3 days before (minor MI). So just worn them that you may pass out and feel bad but that is the effect of the test and the Docs and Specialist are there and know what to do if and when you crash. Don't be surprised if you have a headache or throw up, the Docs just Love that!! Good Luck and God Bless ! Pam

Try to see a pulmonologist for a functions test and rule out anything like COPD, Pulmonary Hyper Tension and check your lungs. I get frequent CP and they can be different from each episode. Some are sharp pinches, heaviness, prolonged stabbing pains. If I have a bronchitis flare up I can get the little pinches in the area where an Xray will show fluid. Sometimes the Docs will call our pain "Chest wall pain". Wich can be a soreness, or intermittent sharpe pains during and after excersion. If it goes away when you lie down then that is a good sign, but prolonged pain probably should be seen in the ER for a fast diagnosis. Good Luck PAm

Hi! Sorrry about you having to go through so many test. You are however among friends and most of us have been tested like guinea pigs in an old drug experiment. Just being humorous. Seriously the TTT is the place to start and get a diagnosis. The test is painless but a little scary and uncomfortable since they are trying to induce your symptoms. My first one gave a false Negative result and my MI and syncope were assumed to be from Hypovalemia and electrolyte embalance. The second TTT was way positive and I was diagnosed w/ POTS. It does'nt stop there though. We are all trying to define why we are feeling the way we do and what meds are best. My retest on the TTT was done because I was on a high dose of Atavan and IV meds that stabalized and slowed down my body's reaction time. So my response to the maneuver (Tilt up to standing) was unchanged. Ask your doc to make sure that any meds that you are on do not effect your testing results. Keep a journal for how you are feeling and when you are symptamatic. Write down your foods, activities, sleep patterns,fluid intake,pulse, and anything that does not feel normal. All of that may help your diagnosis. Good Luck and I hope you feel better. Pam

CP while excerisising is quite a familar friend here to. Its my clue to slow down,sitdowm and drink water. Check your puls and monitor your symptoms. You are never to yung for a heartattack. THats how my pots was diagnosed. I kept passing out, 9mos of "chest wall pain" a echo fpr Pulomonary Hypotension(while recovering from Pulmonary embolisms) and all they could find was murmurs and regurgatation. After all of that the passing out became less freuuent for about 6mos then stared p again. My hemo doc said low pottasium and sent me straight to the hospital for tests. After 2 or three differnt tests and a heart monitor placed I began to feel tired and alittle off in the heartbeat area. I wa washing my face and became a little more coherent about 6 hrs later in the Cardiac ICU. The tachy and arrythmias either caused or were a inferior MI and my cardiac enzymes confirmed it. The said it was a electrolyte/hypovalemia problem that started it. I passed my first TTT, which they stupidly did while I was out of it on ATIVAN. the dosage was so high I can't rememberthe12 days in the hiospital except the day I got there and the ride home. 12 hrs or so later I was back on the floor of my kitchen and then back to the hospital. The next TTT was failed severly and ta da! Here we are. My question is what to do/expect about the pain and heaviness in the chest after a little escersise. I mowed the back yard Thursday and was deeling with CP and lef tiredness Fri. Sat I did the front yard and its the same but worse. Hopefully I will remember to bring this up tommorow at the docs. Be careful! Pam 32yrs old

I get Migraines,sinus headaches (allergy related) and then the worst of them all called a Spinal Headache. Dull pressure constantly and no matter if you are sitting or standing, then sharpe and all most knock you out stabbing sensation deep in the head. Sometimes I can describe where the stabbing pain was because of the suddenness and intensity. The causes are tricky : neck or back injury like whiplash, bad recovery from spinal tap/IV in the column, and or/dry spine(i don't remember the med term but you have a decrease in Spinal fluid in a area most likely due to injury). I first got one after a Spinal tap for passing out at the cash register at work 5 years ago. They let me get up and move aroun 30min after the procedure. When I was released from the hospital on the good drugs I went home and layed down for awhile. I woke up and went to turn my head and felt a 10 out of a possible 5 pain right through my head and lost consciousness. A few seconds later I calle for my husband but everytime I moved my head I screamed. Paramedics came and the thought I could have has a spinal hematoma so they were real gentle. All the way to the hospital I kept blacking out. After more drugs and 24hours of dull pain then the sharpe, a nurse caught on and said that I should see the anesthesioligist. He came up and they used a ultrasound to determine that I was low on fluid at the site and did a blood patch. Blood from your arm injected right into the spinal column. Instant pain relief. Home remedy for them is extra fluids lay down in the fetal position ot on your back with your knees pulled up. slowly move your chin to your chest and stretch. I still get them but only if I get jerked or jarrred real bad. Now though I know what they are and if I was niot on a blood thinner then I could get a blood patch and go home and laystill for 24hrs. Anyways..have you fallen or jarred your spine real bad? If so consider the possibility and talk to doc ASAP if this sounds familar

klor-con perhaps? 2omg 3 TID. Not sure if that is the pottasium pill you are referring too or the one you are looking for but that is what I take since my body loses pottasium for no known cause (yet). Pamela

baby boy, Ain't that the truth! I notice the that my heartrate goes up much faster abd sooner than what it use to when I worked out canstantly. I know that I am out of shape but as soon as I get the eliptical my heart rate is 130 or more 1 min inti the workout. However, if I use the recumberant bike I usually don't get above 130-140 during the entire workout. My normal training HR is 155-170BPM but the Doc lowered it to 130-140 max for no more than 5 min then gradually increase the length of time to 30min. Big change since I use to do about 170bpm for 30min-1hr with slow downs every 15 min. So I do better at the gym but the store and mall stuff is so incredibly hard anymore. THen with aone year old too! Everyday to me is a workout, 20ish hours a day. Sorry for any typo's. My hands,brains and eyes are all out of whack. Even when I proof read it takes me three or four tries to correct one word Question though.. Hoe do you get rid of the tingiling, aslleep feeling limbs ets and that restless leg/body syndrome thing? Last night was agony and I ony got about 2hrs of sleepeven after pottasium,xanax and chammomile tea. I enden up sitting in the shower at 2:30 am!! pamela

I have noticed a increase in the onset of my pots symptoms when I am out and about. When at the gricery store it is hard to remember what I went there for and standing is line *****! Then you do so much bending over and standing back up while checking out that the light headedness is way out of control. I now take a buddy with me. I can kean on the cart if I need to, thay can get what s on the bottom shelf and if I can't stand in line they will finish up for me. Most groceriy stores have a bench around where you can take a break. I went to the mall for the first time in 8mos. It was crowded, loud, you couldn't get anywhere quickly. After walking the 1/4 mile to the front door(maybe not that far) I was out of breath and needed a break. While looking at the different store a headache came on, then I noticed again that my pulse was up and I had started slurring words! My mom was looking at me weird,then she noticed that my balance was off too. It was then time to sit down. The moral to this story.. Go when the crowds are less, take a buddy in case you get in trouble, take a bottle of water or gator aid, and pace yourself. Remember babysteps...! Do a little more everyday but realize that there will be days that you can't do at all. If you are nervous and upset before you gey where you are going then definetly consult your doc. I was on Lexapro but it was aggrevating my dizziness. Now I use 1mg xanax as needed (right before going somewhere stressful).

Than you for the encouragement. Evidently the 19th was a very bad day for me. I just read my post, I need to apologize for the spelling,typo's and run on sentences. Yesterday I went to the Cardio Doc and he said that I looked a little pail. Upon examing me he said its a no wonder that I look so rough. I was tachy and arrythmic but my BP was catching up to where it should be when I stand up. He is going to keep my meds the same until some other tests are run. Oh we!! We did find out that I have the MVP thing. So more reading to do. Bye for now pam

From a sick wifes perspective.. I am early thirties and have a small child. My first chils was born to me in my early 20's when I was healthy. Even then it was hard. I have been sick since 2003. I developed a Pulmonary Embolism while my husband was in Iraq. They sent him home to be with me and help me recover. He was very afraid that he was going to lose me. He did not baby me. Unless I needed it. He let me try to do the things that I use to. There are lots of no-no's when you are on a large dose of blood thinners and have lung damage from clots. Anyway, he was there for me and never complained. He wanted me better so that he could go back to Iraq yet he wanted to be with me to insure that I would be o.k. Humorously while recovering, we found ourselves pregnant. Added precautions were taken to keep both me and the baby well. He wanted to stay the entire pregnancy but I sent him back. I was given about 4mos grace periode from the time Angelina was born before I began passing out. More ER visits, Ambulance runs, tests etc..He was patient and always ready to go to the hospital. Sure it was hard for him to go to work at 0530 after just getting home from the hosp. but he did. After all of this we are still together. He loves me and I love him. He has always let me take the lead when it comes to having his help or not. But when I could not make decisions regaurding my health care because I was out of it, he stood by my wishes and stayed by my side. It is hard to see him hurt for me and want to do so much more. Then I want to do more because I am the wife, mother and the nurturer. See , male and female, husband and wife,whatever..In a relationship each person has a role but they can alternate and switch. Remember that she cares for you. I am sure that she would rather you be healthy but her love shows and gives her the compassion to help you. The best thing for you to remember is to say "thank you" and" I love you" to her everyday. If she offers to help don't refuse because that would hurt her feelings. Above all show her your appreciation and smile. Be there for eachother, sooner or later things have to change. Hang in there. Pam

Same here. I started at 20 mg Nadolol and my BP plummetted but my heart was,nt so fast . I GREYED OUT AND LAYED ON THE FLOOR A LOT. I have the chronic Hypotension made worde when standing . I was diagnosed in May05 with O.I., Pots Hypovalemia, and today we discovered I have Mitral Valve Prolapse. After another round of tests we will try the Vasoconstrictors. My new cardiologist reccomended the internet and this forum so that we can gather as much info as possible. Goodluck and I hope you find what works best for you!

I eat lots of quick things and when I cook its enough for 3 people for 3 days. I chow tith my baby. I call it my toddielers and wobbelers diet. Cheese cubes, grill cheese, soups, cans of veggies hot or cold served, macaroni and cheese (quick variety) and add meat of any variety with any of the above. She is just geting into the whole eating the real bannana thing and its hilarious. Since I think we are both 1/2 monkey we eat bannasas every am and stretch together on the floor. I also have two good portable handrails. One is Cupid (11month old 130lb Great Dane) and Copper (1.5 year old boxer mastive mix). Both come lick my face if I fall down. Cupid reminds me at 5:00 am that I need to get up for my meds and his food, and he will help me up from the bed of floor. I grab is harnss he pulls slowly, wates for me to get balance and we continue this process until I get to the door. Copper goes and gets things for me, like the remote, my shoes ( I don't always need them but just in case..). Seriously. With out traing the dane he knows to wait and go slow with me. As for showering, I try to invite myself into my husbands shower. He doesn't complain. And He gets a laugh or two watching me try to rinse my hair and hold onto the wall a the same time. He is a big help though. Anyone vacumed or mopped,swept or vacumed while sitting or crawling? Pam

I have the am pukies too. Try sipping luke warm chamomille tea. I can't use pepto and I save my regalin for the eally bad days. If there is no one to make it for you/brig it to you. You can ore make it and put in a thermal cup when you lay down and its normally aa little warm 6-8hrs later. Try driking a little before you lay down, then when you get up. Check with doc first dor drug interactions before hand. I use thr celestial seasonins brand. Peppermint tea works too. Also for a quick fix, **** on a slice of lemon. I did this while pregnant both times. I let my 18month old have a little lemon since she hates the Chamomille tea even at its weakest. Pam

I just woke the baby laughing to loud! That is the funniest,most educational, description of us ever. Is it o.k. to print if not then I won't. See I have to write my symptoms down for my appt in 3hrs and my brain keeps losing trac. So if I could use your DR Zeus to (yawl's Dr Zeus)explain my symptoms then maybe I might be more concise. I willbe sure to acknowledge the authors of each stanza Please..Pam

Being humorus here... Maybe we should all work at night since we are awake any way. What could we do...? Nighttime babysitting,dog watching...? I know, write a book or 10. Testomonials about our life, "funny thing happened on the way to the flloor. (just an example. My dad got up around 3am and I was up on the computer organizing my questions for a doc appt today, and he said "You know if you go to sleep maybe you won't be tired." I just agreed and went back to work. The days that I feel really crummy I think about him. He is my stepfather around 50ish and single. He has severe Rheumatoid Arthritis and some times he can't even grip a coffee cup. Yet after I got had a P.E. in May 03 while my hus was in Iraq. He stayed with me and commuted 35miles to work at 3rd shift, he stayed w/ me 90% of the time when I was pregnant and they redeployed my spouse. He was so supportive. Now he is declining fast and can't always afford the reccomended drugs for his condition. He still comes to visit and help out. Seeing his struggle tuns my heart to mush for his pain and suffering and I feel thank ful for all his effort. He really gives me my reality check. Love to all, Pam in NC

Hi! Certain symptoms come and go for me to. Though I am always tachy it does get worse some days. My worst problem is getting up everyday. I here the alarm, the dog crooning in my ear to get p and I really try. Luckily he is a hard head and trained himself to wake up at 5:oo am to pee or eat but mostly he watche me take my meds and try to start a pot of coffe. Then we lay back dwon for an hour and he goes out and I get to dealing with the day. I am worse to right befor my periode, PMS is wors, GI problems are worseetc. THen the week after I have lower BP and a highter ht rate, But I went for 3 weeks with only mild exhauston and felt o.k periode. i avoided standing up to fast and singing while standing up. Church goin is gret but I cannot sing while standing uo any more. Well, good luck and the best advice I say is take a recors of how you feel when and write diwn any unusual stresses you may have come in contact with Pam NC

Hi! there. I do Pilates because you do a lot of it while on the floor(our favorite/safest position here ). When I have the energy nice, slow, quiet walks with one of my good dogs is the best. I use to hike before this wave of OI/Pots kicked in. Now my husband and I stroll through the woods. Most important I think is know your limits and excersise with a buddy. DRINK FLUIDS! Good luck and stay active. Oh! try some simple ballet positions that involve heel raises and Pli'es.(Squats that are performed while standing up straight. Pam

Greet to meet you. I am a sorta new member. This site is a great place to learn about your disorder and all that goes with it. Take care! pam in NC