lalalisa

Hello! I tried Provigil for a while because fatigue is my worst symptom. I didn't like the way it made me feel -- kinda jittery like I had too much coffee or something. My brother who has CFS takes it and it seems to help him. If he knows he has something he needs to accomplish on a specific day he is sure to take it. (On days when he's home all day he doesn't) I think it's worth a try. (I've never tried Celexa) Hope it works well for you, Lisa

Dr. Grubb actually prescribed this for me a couple of months ago. He said that Wellbutrin has helped quite a few of his POTS patients to feel more "normal" because it can help your nervous system to function more properly. I did try it and didn't have any side effects except that I noticed I wasn't sleeping as well...so I eventually went off of it. The weird part about anti-depression or anti-anxiety meds is that everyone reacts completely different. I'm on Paxil CR - the lowest dosage - and it helps me with anxiety tremendously! But everyone is different and the frustrating part is that you can't really know how you'll react until you try it. Take care and please let us know what you decide to do. Lisa

Steph, Are you now able to get the Epogen? If so I will be rejoicing with you over the good news!! Take care and thanks for keeping us updated on your situation, Lisa

Since my sickness I've had a fairly constant level of anxiety. (I doesn't change with posture but does get worse when I'm extremely fatigued) I take a low dose of Paxil CR which helps keep the anxiety levels to a minimum. Lisa

Hello! I take Singulair, Flonase, and Benadryll daily. Hope you find some meds that help, Lisa

Thank you for posting this topic....I have constant chapped lips as well. I go through so much lip balm it's not even funny. Lisa

Hey Melissa, Oh, I hope things go smoothly this week! I can't imagine what you are going through! Thanks for posting and allowing us to be a part of your life! Praying for you, Lisa

Hello! Today all day I experienced tightness in my chest. I feel a constant pressure on my upper chest with almost an achey feeling (no stabbing pains just an all over pressure/ache). Do any of your experience this? I was wondering if it's just a typical POTS symptom? (even though it's new for me) I get short of breath fairly often but it's usually not accompanied by the tightness and ache. Do any of you know why this happens?? Thanks, Lisa

Hello and Welcome! Many of us have lost weight due to POTS (I think it can go either way though - gain/loss). For me I think muscle loss has played a substantial part. I also, like you, have times (weeks) where my appetite just leaves completely...I then force myself to eat and I eat high calorie things during this time so I don't lose any more weight. I have recently started exercising again so I'm wondering how this will affect things. You are not alone in this, Lisa

I truly hope she and the baby are alright! Lisa

I've been getting this sensation recently as well. I find it really weird! For me it usually only lasts a couple of minutes or even seconds and then goes away. Lisa

I'd probably start with just one -- small. Thanks!

Steph, Hello! I'm just writing to let you know that I read your post and that I'm so sorry you are having to go through this right now. I've heard you explain many times how much Procrit has helped and I just can't believe that the one treatment that has helped you is the one youre not able to get right now. I wish I could help, Please let us know how things go, Lisa

Rebecca, Hey! I hope all goes well. I hate IV lines as well....they say it's a "just in case" part of the test - they didn't end up using the line for me. They put the line in at the beginning of the test so that they don't disturb the test later on if it's needed. Please let us know how thing go, Lisa

Rebecca, Hmm, that's a good question! I wonder if the nurse was including the time it takes to register in the hospital, etc? I wish I could help. All I know is that for my TTT they monitored me laying down for a bit while they put in an iv line and got me set up. Then once they stood me up it took about 6 minutes until my blood pressure bottomed out. So, total the test couldn't have been more than 30 minutes or so. I hope this helps. I'm sure everyone is different - I just thought I'd share what my experience was in case this helps you decide about childcare. Please let us know how everything goes, Lisa

Fatigue for sure!

Hello! I just wanted to chime in concerning Midodrine. I take 10 mg three times/day as well. I know there is a concern that your blood pressure may go to high if laying down on it but it doesn't seem to be a problem for me. I often lay down and take naps even if I'm in the 4 hour window. I am not giving you advice but wanted to mention this and see if others find that there bp is fine while laying down on Midodrine. Just thought it might help you out if there is a possibility of sleeping while on it. (I know some of us have problems with low bp and others have problems with both high and low so I'm sure it depends on the person) What do you guys think?? Take care, Lisa p.s. I feel your "pain" regarding the goosebumps even in the heat! I even get them on my face!! Weird!!

Hello! I'm so sorry you have to go through this. It's just sad that those who are actually sick are being denied. I just wanted to write because I understand the frustration of being denied. I just filled out my paperwork today for an appeal. I was denied .... it was my first time applying. I hope the appeal process goes smoothly and just want you to know that you're not alone in this struggle. My husband also works way too much (about 4 jobs) in order to keep our household going as well. Hang in here, Lisa

WOW! I just read this topic from beginning to end tonight! I hope and pray that your husband finds some answers from some really good dr's when he returns. You guys have had such a horrible time with finding good healthcare - it's just crazy. Do you all live in a rural area where you just have to drive really far to get good healthcare? All that aside, how wonderful that your daughter and husband are able to take this trip! I'm sure they'll have many great memories! What has been keeping you busy while they've been gone? Take care and thanks for keeping us posted. I am looking forward to hearing about how the trip goes. I will pray that you will find a dr. who understands what's going on and who takes this seriously! Talk to you later, Lisa

Melissa, Hey! I just read this post today... I'm glad to hear that your dad had a smooth surgery. I will pray for his recovery. Please let us know how things go. Lisa

Gelann, I hope your daughter is helped by Dr. Grubb's treatment. He didn't perform any tests but I took all of my copies of tests and bloodwork with me (as do many of us, I've already had tons of tests performed and have already tried some of the latest meds for POTS - such as mestinon - actually Mestinon isn't new it's just that using it for this purpose is fairly new). He prescribed Wellbutrin xl. Other than that, all of my other meds have been prescribed by various dr's here at home. Each patient is different - but I'm sure he'll have some ideas for your daughter! Take care, Lisa

Hello! I'm back from the journey to Toledo. It has taken me about a week to get to the point where I can post on the forum as I've been extremely exhausted from the trip. My first visit with Dr. Grubb was great. I first spent about 30 minutes with his P.A. in training (her name isn't coming to me at the moment) and she was great! Extremely informative and also motivating and kind. Dr. Grubb spent about an hour with me. He went through a powerpoint presentation and explained autonomic dysfunction, POTS, and generally what is going on in my body (nervous system wise). It was so great just having a dr. see me who knows what I'm going through and acknowleges my condition. I wish I would've had more time to ask him questions but I think he really focuses on the education part which is great too. (he is very kind!!!) His ideas for me spefically involve just a few minor changes that we hope will help. He wants to add Wellbutrin XL in addition to Paxil CR which I'm already on. He thinks that it may help me feel better in general and that it may help my nervous system to function better. He also really stressed that I need to work towards a regular exercise routine. The reason being that when I stand upright and my heart/blood vessels don't work correctly to get the blood back up to my brain that the leg muscles need to then be strong enough to intervene. Right now I walk a bit but it's always a leisurely stroll and even that wheres me out completely!! He stressed that the exact thing that my body wants to do (sit and rest) is the opposite of what I should be doing. He mentioned swimming as a great option for POTS patients because the water actually puts pressure on your body from the outside thus it better regulates your blood pressure. In addition, if I can work up to actually swimming laps my body would be flat and not upright which would help me feel even more "normal". His PA told me that when I get in and out of the water I should do this slowly and allow my body to adjust......especially getting out!! Because I could pass out easily when leaving the pool!! He mentioned that there is still a fine balance here with exercise....he said that his patients tend to either over-do-it and then they crash completely or his patients do very little and just try to survive and get decondtioned.....both negative results. He wants me to find a balance but to make it my goal to actually work up to a cardio exercise routine. He also mentioned that he thought he could "guide me through pregnancy"....but only if I can build my strength up again and begin to feel stronger. (I'm extremely weak right now) He also mentioned that I need to consider if I would be able to take care of my child once it was born.....and at this point I know I would'nt be able to. But there is hope! And I will persevere! =) All this to say everything went smoothly....from the travel to the hotel...to the YUMMY SALT BAGELS my husband found my at Tim Horton's just across from the hospital!!! Next time you go you've got to get one of these!!!!!!!!! I've never in my life eaten so much salt in one sitting!!!!!!!!! =) THey're so salty I almost gagged!! Hahaha (and that's salty from a POTS patient!!) Oh, About the waiting room. It's confirmed you really do have to wait a REALLY long time in the waiting room!! (It was 3 hours for me and then 1 hour in the exam room before I saw Dr. Grubb) I hope I haven't left anything out. Please feel free to ask any questions. Take care, Lisa

Hello! I'm glad to hear that you are going to be able to get this test done! (we had talked before because I also had the Daxor BVA-100 test at Washington Hosp. center) One suggestion....call the nuclear medicine department a day or two before and make sure they have ordered the radioactive dye for your procedure. They forgot to order it for me and I had to wait another day for the procedure (after flying across the country and driving 2 hours to get there it was pretty frustrating!) The results are great to have - for me it's been great to have proof on paper as to why I feel badly. (at least one of the reasons) (so many of my symptoms are just vague and can't be explained on paper) My results: Total blood volume: 19.4% deficit Red Cell volume: 34.5% deficit Plasma volume: 10.8% deficit Unfortunately even though I am technically hypovolemic Procrit hasn't helped me. But there is still hope! According to the dr's I've seen Procrit actually helps most POTS patients who are hypovolemic so it's definitely worth a try! Please let us know how your test goes. Take care, Lisa

Radha, I hope you find something that can help you. Just thought I'd write and "bump" this topic back up to the top. Take care, Lisa

Jan, You both are in my prayers. I just can't imagine what you guys are going through. I'm encouraged to hear that the first round went well. Thanks so much for keeping us posted! Praying for you, Lisa