yikespanic

I finally had my appointment with Dr. Grubb yesterday. My appointment was at 4:00 pm. Early in the day his secretary called and told me they still hadn't received my records from Cleve CLinic! I called the Cleve Clinic and at first they did not want to give me my records, finally they gave them to me. What a hassle! They warned me that he would be running behind and he was. I was seen around 6:00pm, he appologized, I told him I was just so happy to be seen. He took time to totally explain POTS and it's effect on me. He had a beutiful power point presentation and broke down all the different aspects of POTS and it's related symptoms. I had never been to a doctor who took such patient time to make sure I understood and explained my questions and concerns. He said I do have POTS and it was probably brought on by that nasty virus I had back in Dec 04. The horrible anxiety feelings I have be experiencing are brought on by the adrenaline surges that my body is attempting to use to normalize my blood pressure. My mind was so full of explainations that this morning I can't remember everything. He gave me a RX for celexa, a small dose of 5mg to start. He said I may have insomnia for a little while, but thats a good sign. And should go away after a little while. I started it this am and I'm praying it works for me. He said sometimes adjustments and additions are neccessary, each patient is different, it's like making a tailored made plan just for me. He did say Dr. Fouad does excellent testing and was very satisfied with her results in the past. All in all I had a wonderful appointment and feel truly blessed to have been able to see him. I will be going back in 2 months for my followup. Today I feel a little less fearful and a lot more hopeful. He gave me instuctions to start off slowly and work on building up mussle mass in my legs as this is a very important part of treatment. He said swimming is very good, the pressure that the water puts on the body is simmialer to the commpression hose we wear! Exercising in water brings on less symptoms and enables us to be able to exercise. That's all my brain can remember right now, it's been on overload ! LOL I woke up with my eye swollen this am, now what, stopped at a med center after taking son to school--PINK EYE. Kim

Mary, I will be praying for you that you don't have MS. Kim

Hi Belinda, I just sent you an e-mail. Kim

I have been so frustrated with Cleveland Clinic. I have been trying to get them to send my records since October to Dr. Grubb so I can make an appointment. I called today, Dr. Grubb's office still has not received them! They are calling cleveland Clinic for me and Sherrie fit me in with Dr. Grubb at 4:00pm on Valentines Day, they just had a cancelation!!!!!!!!!!!!!!!!!!!!I was so overwhelmed and happy when I hung up I couldn't stop crying!!!!I was so down because I'd have to wait months after they got the records and now It's only a little over a week away!!!!I know were not suppossed to get religious here but G-D is GOOD!!!!He surely does hear our prayers. I really needed this today, I was so into feeling sorry for myself and down. Kim

Thanks

I know just how you feel. I've had a few similiar experiences over the past few months. I kinda have to remind myself that I am the patient and I have a right to ask questions and such. You can't let how someone else acts make you feel down. Just keep doing what you think is best for you and if that means going to the Dr, then by all means go. He might have just had an off day and next time will be better. Take Care Kim

Today was the worst symptom day I've ever had. I woke up this am feeling kinda so-so, not really bad, but not good either. Drove my son to school and on the way back home felt light headed and really wiped out. About an hour after getting home I got a phone call from one of my son and daughters friends. He was feeling real sick and wanted to know if I'd take him to a med center. About this time I thought this is going to be a bad day. What could I say, NO. I told my daughter to tell him sure, and I'd pick him up on my way to take my daughter to work and drop him off at the med center and to call me when he was done. (His mom wouldn't take him, long story) Then I had to take mother in law to dr. While in route daughter's friend calls, and says they want him to go to emergency room! I had to drop off mother in law, pick up really sick kid, take him to emergency room, (His mother still is a no show!) I can't sign anything he's only 17, finally they call his mom, I hate to leave him there alone, but gotta run back and pick mother in law up and take her home. By this time It hits me, I feel like I am gonna crash (physicaly) I can barely make it home. I lay down for a half hour to rest. I gotta pick my son up from school and I can barely get my shoes on. I feel like the very essence of what makes me tick has broken. I felt so drained it was scarry, like I might just melt. I waited a little bit then got into the van and drove slowly to the school. I had never felt this bad before. My son drove the rest of the way to pick up my daughter from work and then we came home. I could hardly get out of the van and walk into the house. My husband said maybe it was all the stress of what happened today, I really hadn't done real physical work, just alot of driving. It was just such a massive feeling I can hardly explain it. I just want to wake up from this bad dream but it's real and it's not going away. Wish sometimes you all lived just around the corner. Just whinning Kim

I stopped at Walgreens drug store, they had a glucose monitor on sale for $9.99 with some free test strips included and a $40.00 rebate! That was a nice deal! I'm going to test myself when I get symptoms and see if it's my BP or possibly low blood sugar or maybe both? It might explain why sometimes my BP is ok but I still feel so horrible. Kim

Just checked my lab work these are the results, Cleveland Clinic has "My Chart" now and all tests go online for you to see. Did she run the right test? My Glucose was flagged, it was low. Do you think this is why I'm feeling shaky, dizzy, lightheaded and tired even though sometimes my BP is ok? Could this cause anxious too? I am going to call her, but I get sick to my stomach cuz she's giving me such a hard time lately. She hates that I am allways asking questions I think, but isn't that her job? Protein, Total 6.8 6.0 8.4 g/dL Albumin 4.2 3.5 5.0 g/dL Calcium 9.2 8.5 10.5 mg/dL Bilirubin, Total 0.7 0.0 1.5 mg/dL Alkaline Phosphatase 71 40 150 U/L AST 14 7 40 U/L Glucose 58 ! 65 100 mg/dL BUN 15 8 25 mg/dL Creatinine 0.7 0.7 1.4 mg/dL Sodium 141 132 148 mmol/L Potassium 4.3 3.5 5.0 mmol/L Chloride 105 98 110 mmol/L CO2 26 23 32 mmol/L Anion Gap 10 0 15 mmol/L ALT 9 0 45 U/L First # is my result, second set of #'s is the low and High of normal readings What are you oppinions? Kim

I am finding that I am getting sick of the taste of gateraide. I buy a mixed flavor case at my local food service warehouse, it's just the taste of them in general. Almost to kool-aide like. I like the clear new ones better but haven't been able to find them in bulk, single ones are expensive when you buy so many. Anyone every try anything like this: http://www.eletewater.com/buy_elete.html (drops for regular water) I thought this might be more ecconomical? Hate to dump the money on something no one else has tried? Kim

Hi Renee! One reason I don't nap during the day and I am so tired is that when I nap I seem to always have bad dreams, some really scarry ones at that! I have been sleeping in all weekend and my husband noticed I have acted rested. I really do feel a little better when I get extra sleep. My children are 17 and 19, and they have been really sweet when I don't feel good. They both have their temps and are always willing to do the driving if they can cuz I feel dizzy alot. I can't emagine how parents of really little ones are managing. Thanks and Take Care Kim Jacquie, I am one of those that dream for what seems all night. And when they are scary there really bad. I can't watch scary movies either, they upset me way to much, they can even cause me to feel my symptoms worsen, especially adrenilin feelings. Sometimes I wonder if some of my meds cause them? Who knows. They say if you dream alot your not getting good sleep. I hope all your dreams are good ones! Take Care Kim

Thank you so much everyone, I thought I was going crazy. I went to a few sites that were about sleep paralysis and it sounds exactly like what I experienced. You are all such a blessing. I did really overdo it this week. My son has been down in the dumps thinking he had ADD, and this week he had a followup appointment with the psychologist and she doesn't think he has ADD but a sleeping problem. I have been trying to have some quality time with him and kinda went overboard this week doing all the things he likes. Yesterday I was just plain totally wiped out, my tank was on empty. I want to do all the things a good parent should do but sometimes I'm just not able cuz I'm just to wiped out. Thanks Again Kim

I had a very strange thing happen this morning. I had decided that after I drove my son to school this morning I was going to go back to bed and get some much needed sleep. I had had a very busy week and my kids all had doctor and dentist appointments for what seemed every day, and I had really overdone it and I was really paying for it. A little after I layed down I was feeling very light headed and had that creepy feeling that I was moving but I wasn't. I hate this feeling, usually it makes me feel car sick and it ruins any sleep I might have had. I think I fell asleep though. Well I am not sure I was dreaming or was slightly awake, but I had the feeling all the sudden that I was falling. It happenedd real fast and the next second just about I had a funny feeling in my head, almost electrical? At exactly the same time I felt like I couldn't move, kinda frozen. As soon as it started it stopped and left me scared and feeling strange. I don't know what happened to me. I did get back to sleep, I think only because my older daughter was home and crawled into bed with me and hugged me. I was so glad she was home. I don't know if it really happened or I dreamed it. It felt so real. I think my eyes were opened when it happened? I've had so many goofy things happen to me lately I feel stupid asking her cuz she probably has me labeled a hypochondriac. She gave me a hard time when I asked to have my electrlytes check this week, she finally gave in and called the lab with a script, but told me next time ask my cadio to do! Why do they treat patients like this, is it so hard to be nice and have feelings. I'd appreciate if anyone has ever had anything happen to them like this tell me cuz It's got me really uptight and scared. What could it be, can it be my BP dropped while sleeping? Mine has been a little off since starting florinef a few weeks ago. I have even got up first thing in am with it high 138/89 pulse 91. Before florinef I'd wake up with it really low 90/58ulse 71 or lower. Any Insight? Kim

Just called my primary's office and asked if she could order me an electrolye panel, can' t wait to see if they will cooperate. Kim

hmichael, I know exactly what you mean, when I try to do the breathing techniques my counselor taught me sometimes it actually makes things worse. Last week she told me a new one. Try and only breath 4X/min, once every 15 seconds. This is supposed to do something with your oxygen and carbon dioxide exchange that after a few minutes stops hyperventalation. I've tried it, it feels like I'll suffocate, and I get dizzy. Kim

Hi, My husband and I took a drive and spent a day sightseeing and shopping in an Amish area, Berlin and Sugarcreek area of Ohio and we stopped in a health food store that carries alot of unprocessed goodies and homemade amish items. That's the ultimate store for me, since I can not eat most processed foods and the health food stores around me are so expensive. I came across a product called "Bio Salt" I purchased it and I am giving it a try. I found a couple of sites online about it one is: http://biosaltusa.com/biosaltusa/moreinfo.html Another similar product is touted on: http://www.bionatural.com.au/?newsID=88974&lPID=63 This one has a book about water and salt called Water & Salt - by -Peter Ferreira and Barbara Hendel. I guess if we are supposed to ingest so much salt each day, it wouldn't hurt to investigate what type would be most helpfull to us. Bio-Salt lists it's ingrediants but I still have not found info to figure out how much Bio-Salt would be needed to equal how much salt I need per day. It says "It's not a salt subsitute" http://www.bionatural.com.au/default.asp?s...cID=common_salt This is a link that says regular sodium chloride is bad? What do you think? Kim

Hi, Your post really struck a cord with me. I have been complaining of feeling like I'm hyperventilating and my doc feels it's part of my anxiety and panic. I feel IT makes me feel anxious and panic. What a unending oddessy this all is. I never counted My breaths, I'll try and see what it is. Ok I counted 19/min, I'll try counting them next time I feel like I'm hyperventilating and see what it is then. I was never told this could be a symptom of POTS. I WONDER WHAT ELSE THEY DIDN'T TELL ME. I'm going to ask to have my potassium and other levels checked. I was told to eat 2-3 bannana's a day and not to worry. I still am worryng though. Take Care Kim

What exactly is a surge? I have been taking my BP daily and since being on florinef my BP has gone up, but up for me is about 116/70 or so. so today was really up there. I asked about potassium levels and she said just make sure I eat 2 or 3 bananas a day, which I have been doing, my husband asks if I feel like a monkey yet. I am going to call and leave a message for her and see if she'll call me back before monday. I did have quite a headache for 3 days this week, but I 'm not sure it was from florinef or something I ate. I get them from processed foods, which I ate this week. Who knows? I never seem to get all the info I need to know from my doc visits, I seem to learn more from all of you. Thanks for the info. Take Care Kim ]

Thanks everyone for responding. I am going to give it another shot, my doctor said to take a quarter of the dose I tried on Monday and see if that works without making me so groggy. The dose I tried Monday night left me groggy for 2 whole days. I think I am extra sensitive to it. I am going to start tonight cuz it's the weekend and I don't really have to drive or anything till Monday. That way I can see how it affects me at the smaller dose. I hope it does because I need something to work. Kim

I'm so glad you feeling ok, get some much needed rest and take care of yourself. Kim

My heart started racing today, pulse rate went up to 140 and BP was 164/99 this was at it's highest. I just started florinef this month and was wondering if this was related? It lasted for about a half an hour and I was not at home but in the car with my son. I happened to have my BP med with me and took a 1/4 of one and in about a half hour my pulse rate came down to 88 with a BP of 116/73. I've never had a high BP, not ever. Does anyone have this happen to them? It's to late to call Dr., as she probably won't get back to me till Monday anyway. I'm just a bit scared over the whole ordeal. I've had the racing heart feeling but usually when I take my BP it's within ok limits. This time it was so high for me. Kim

Your not being a baby! I know just how you feel. Some days after feeling ok for a few days then it all comes back again can be really depressing for me. When I finally got a doctor who had some insight into my symptoms and took my BP possitionaly and said no wonder you feel like passing out[ and then said don't worry no one ever died of this, your going to be ok. It still feels like how can something that can give you so many overwhelling symptoms not hurt me? Even though I know this it' somehow shadowed by all the wierd symptoms and fear. Especially when I lay down to go to sleep at night and my heart feels like it is racing out of my chest, but when I take my BP it says it's ok. How can it feel like that and still be a normal reading? I just don't get it. It's just plain scary. I worry that my heart will wear out or worse. Don't ever think your alone, we all know how you feel and care. Kim

I had one years ago, and I think the worst part was feeling ill from the anesthesia and wanting to just get into my own bed. I'll be praying for you that all will go well and that you will recover quickly. Take Care Kim

May I ask what is licorice root used for? Kim

Thanks everyone for replying, My Doc called me to see how I was doing today! That was a surprise. I told her that the med was making me really groggy. Almost like I had a few drinks. She said to take half of one instead tonight and see if it is better. I didn't really have any bad anxiety, but then I think I have been to sleepy to notice! I had also started up florinef again last week and my BP has been really stable. I hope the headache I have today is unrelated. Kim