yikespanic

I have my dosing schedule, it's to take one pill twice a day. I just wanted to know what might the best times would be? I know some meds make it difficult to sleep at night and I was wondering if anyone had any experience? Thanks, Kim

I need some advice. Dr. Grubb added bupropion to my med list this week and I am such a chicken to start a new med. I am going to wait till Saturday and start it over the weekend, as I have no special plans to go anywhere. I heard conflicting stuff on when to take the doses. I have to take it twice a day. Should I take it in morning when I first get up, and then before bed. Will it keep me up at night? Anyone have any experience with this med? I get so scared after reading the WARNINGS on the insert the pharmasist puts in the bag. Scizures, halucenations......you know the really scarry ones they say rarely ever happens. I am always afraid it will happen to me though. He started me on 75 mg 2x per day. I am going to break them in half for the first week though, I am usually sensitive to starting stuff. We did this with the celexa when I started that and it worked out good. Oh yea, I saw a warning that you are not to stand to quickly, will it mess with my BP? I sure hope not! Thanks Kim

Dayna, I homeschooled both my kids, my daughter k-2 and then 5th and then her senior year of high school. I homeschooled my son k-3rd grade. I did not have POTS at the time. It's good to join a support group if you have one in your area. It really helped having other parents who had experience and ideas. It also was neat to pull resources and go on outings together. We had art class with about 15 kids at our house and it was a blast. Kim

Well Actavis pharmacuticals called me, they are no longer manufacturing citalopram. I might be able to get one more rx filled but then thats it. This reallystinks. Kim

Have been on purepac brand citalopram since april, has really helped. My pharmacy quit carrying that brand and gave me another company's brand, and I am feeling miserable again! My neighborhood pharmacy had some purepac left, only 7 pills, I took them and began to feel better. Grubb's office said it can make a difference, so I searched purepac out and found out the company was bought out by another company, and they are in the process of changing labels and right now there is a temporary stoppage of there shipments. I am so UNHAPPY. I finally find something that helps me and I am having a problem getting it. Grubb's office is calling me in a medicaly neccessary RX for the brand that helps me and the insurance company said they will special order it, but don't know how long it will take to get it in. I missed school today and felt so misserable!!!!!!!! I want my life back and I want it NOW. I want my medicine back. Anyone else notice a diff between generics? I even tried the name brand Celexa and it didn't work the same. Kim

I'm in Ohio, the state below Michigan, near Lake Erie. Sounds like you will have an exciting time. I love your user pic, It looks like me after a day in school sitting at my computer for homework. Kim

I get migraines after eating processed foods, especially anything containing MSG, the headache you discribe sounds exactly what I experience. For years I was told it was my TMJ, even was fitted for a splint a few times and suffered still. Then went to neurologist at Cleveland Clinic and he put me on an elimination diet. As soon as I added the things on his no no list, the headaches began again. I know everyone is different, but I know from experience that this is what happened to me. It doesn't hurt to try and see if you have a sensitivity to substances such as MSG. As long as I watch my diet, my headaches are very few and never like the ones I got with eating the no no foods. I had had these awful headaches since 17 years old till nearly my mid 30's, sometimes 2-4 times per week. I wouldn't wish them on anyone. I got a list from the doctor, it had things on it like lunchmeat, nitrates, peanuts, MSG, banana's, lots of stuff you wouldn't think would cause a headache. I will look in my desk and see if I can find it and post it. Kim

I know exactly what you all mean. I know exactly what I want to say but sometimes I just go blank. I just can not get the words out. Or worse, someone will ask me something and I just can't even think what it is I want to say. Thankfully I have not made a complete fool out of myself, yet. I am sure I will though My kids think it's awfully funny when it happens and love to tease me. It seems to happen at it's worse when I am tired. Keeping my train of thought is hard sometimes and if someone interupts me in the middle of one I have a hard time remembering what it was I was tried to get to. This also happens mostly when I am tired. Kim

Thank you so much everyone, I was so discouraged yesterday. I checked the calander and it's the week before my period so I think that's way I feel so much worse. It just has been so overwhelming the past few weeks. Between my POTS and my lyme I have just been, well in a hole so to speak. I was starting to feel a bit better then had an allergic reaction, hives and rashes to my antibiotic for my lyme. Doc had to take me off of it and change to a different one. That one gave me tendenitus last month, and on top of everything else I hurt all over. Then the next one I tried this month makes my vision funny, like I can't focus right. I've been a mess. Add on top of that just being dog tired. I did make the college aware of my condition and believe it or not they had two other POTS students last year and really understood. All my professors have been really understanding. I really should be putting my feet up during class, I think I have been just a little self conconcious, dumb I know. I gotta get over it and just do what feels best for me and not worry what anyone thinks, I do to much of that. I asked for a tutor and I should be getting one, they are just so slow here getting back to you. I know what you mean, spending so long on one formula, and not getting it. After 15 minutes I just got to throw it down and come back later. I am determined to finish though, it's something I really want to do. I got a let down though, I had finally decided on what I'd like to do. I wanted to be a prosthetisist, some one who makes artificial limbs ect... but the closest program is a state away. No programs in OH. Oh well, back to the trying to figure out what I want to do. Thanks for all the encouragement, it really means alot to me. ((HUGS)) Kim

Well I am into my third week of full time school. I am so very tired. I drag myself every morning. The thing is it is a little different than the usual fatique. It's been so long since I graduated from high school, everything, especially MATH almost seems like I am learning it for the first time, and they go so fast. I feel like my brain has gone on vacation. I have a hard time concentrating and remembering formulas. And homework takes me forever. I feel like I can't think as hard as I need to. It has been really frustrating. And some of my classes are 2 hours long. It's hard to sit that long, I seem to get as lightheaded sitting still for long periods as standing to long. Has anyone noticed they have difficulty with school and comprehension? I didn't notice I had such difficulty in these areas since being sick until the last couple of weeks. POTS really stinks. Kim

Lisa, Dr. Grubb gave me a prescription for rozerem back in april and I just tried it last night. I slept like a baby. I did feel alittle groggy this morning, but I have been that way for a few weeks so I am not sure it was the med or not. I am always leary about trying new meds, have had a few awful experiences in the past. I started full time college in August and have been so tired but when I go to bed I don't seem to get a good night sleep and it had really caught up with me. I just had to try and see if the med worked. It felt good to get some sleep. Wouldn't you know though, last night my husbands cousin called at 2:00am to tell me something and we talked for over an hour. Goin to try it again tonight Take Care Kim

I usually always ask pharmacist before i pick up a med, but I wasn't feeling well and husband did the pick-up and I didn't think to tell him to ask. I was reading the info pamphlet and it had a blurb at the very end that said " contact your doctor if visual problems interfere with your daily activities or if fainting occurs" Does this med mess with BP? Has anyone every taken it? I am going to wait till I find out from pharmacist before I take it. It's so stressful always having to be the watch dog for yourself. I am always afraid some med will make me worse and I'll pass out, as I've had a few in the past almost do it and the doc should have known better. Kim

It seemed to help at first but it slowly brought on depression for me. It came on slowly and I didn't realize it at first, just seemed sad then just plain horrible. My doc took me off of it and with in a few weeks all the depression feelings lifted. Kim

Sara, Yes I am. I take celexa. Began with an itty bitty 5mg dose and then now taking 10mg. It did help with my fast heart rate, and with the surges. And as an added bonus it really helps with the anxiety that I was having. I may have to still up my dose a bit yet as I started out at such a small dose and added only a little bit at a time. I hope one works for you. My Dr. said starting out with a small, really small dose and working up to what works for you. Kim

I have lived most of my life in Ohio, born in NC while my dad was in the service, grew up in Cleveland since about age 2?, moved to Parma (subburb of Cleveland) in 1993. I noticed the #'s of POTS in OH struck me funny. I was diagnosed by Fouad at CCF to, but am treated by Dr. Grubb. I bet more people have it we just live in an area where it is diagnosed and treatment more often. Probably where no one treats it it is not diagnosed?????? Just a thought. Another crazy thought is that have you noticed the # of lyme cases popping up here??? Maybe there's more to it??? When I got diagnosed Grubb said he thought mine was brought on by a virus (my POTS) it something to ponder if yours was thought to have been brought on by one, no one ever thought to check me for lyme maybe we should be checked if they thing a virus is the cause. I wish I had been tested back in 2004 when I initially became sick maybe I'd be feeling better by now and maybe my pots wouldn't have gotten worse as time went on. Sorry for rambling, just having that kinda feel sorry for yourself day.... Kim

I am sorry your tests came back possitive, but at least now you have something to go after and hopefully recover from. What bands were possitive on your Western Blot. Just curious, mine had possitive and some IND bands. I will be keeping you in my prayers. Take Care Kim

Thanks everybody for all the ideas. I go back Tuesday to the Dr. and more bloodwork. I friend of mine owns a health food store and recommended Shaklee brand vitamins with iron. And I have also been taking Iron Bisglycinate 25mg every few days. I hope it has made a difference. My daughter just had her phsical and she came back anemic too. She's also vit b 12 and folate defficient too. Thanks\Kim

It's 1:56am and I am not thinking very clearly but I just remembered my dentist sending out a letter to us about new treatments that do not use numbing agents. He uses a new lazer to drill with not a drill and it does not require novacaine. Maybe ask your dentist if he has heard of this new procedure and if not call around and see if someone in your area has it. Hope this helps. I worked for a dentist for 5 years and only had my teeth cleaned and I got free services, Thank G-d I never had a cavity, he wouldn't have been able to get me in the chair! I hated hearing that DRILL all day long. Kim

Nina how do you know what size wire to choose? What gauge or size would you suggest? Thanks Kim

Oh thank you Nina! Now I am so excited!!!! I looked at the bead website, what size wire should I buy? There were so many. Thanks Kim

I know someone on Dinet was making bracelets, who are you???? Where do you get the clasps and what is a good thing to string them on that will hold up. This is the one I want to make, simialar to this one, but I want to make it myself, they cost way to much! http://www.n-styleid.com/beaded_medical_id_bracelet.htm I need pointers on how to do it right. I am going to order id tag by itself and go from there. Kim

Thanks for letting us know Michelle, Melissa, I am praying for a quick healing for you, I hope you are feeling better real soon. Kim

Ok, I have been putting it off, but now I need one, because they asked me to wear one at school, so I have been on computer for over an hour looking? They look so....yukky. I am not sure what to put on it, or should i get the one from medical alert that has a phone # on it with all my info and lists just POTS...? Then they can call and get my whole med story. Should I just get the id part and make a bracelet I like. I know someone here does that??? I don't know why this is such a hard decision? Kim

My son and I went though the 9-point beighton score to see how flexable he was, he easily did 7 out of the 9 activities. He has been complaining for a long time of joint pain, fatique, achieness,...He also has a low BP but so far no pots symptoms thankfully! He is super flexable, which led me to check out EDS. Does anyone know who I should go to first? Just see our family Ped first? We are in NE OH anyone know of a doctor familiar with EDS? Yikes

It took about 1 3/4 year to get a diagnosis of lyme. I answered no to the first question because I just don't know for sure, I've had low bp symptoms all my life, just not the the extream as now. I see a doctor in a neighboring state once a month, and am finishing up my third month of antibiotic treatment, the first month on amoxicillian and the rest has been biaxin. I get blood tests every other month to check kidney and liver to make sure no side effects from treatment. I am actually going to see him tomarrow afternoon, it's an hour and a half car ride one way, But I feel it's worth it to have a dr who knows about lyme. I am new to it so I don't know a whole lot. You might want to go to lymenet.org and research info. That's what I did. Take Care Kim