JoyNtheJourney

Thanks so much for the replies. I posted and then never came back; that was pretty dumb, huh?? I just haven't felt up to it. The pain has decreased a little but it is still very weird. My throat has hurt a lot but not the kind of throat pain you have when you have something like strep. It doesn't hurt to swallow, it hurts farther down than that. I'm also still experiencing pain when I try to lay down or if I bend over....say to pick something up off the floor. It is really bizarre. It is very much a tightness/pressure feeling. I've got a call in again to my doctor. Hopefully, he can shed some light on this. Again, I appreciate my port pals taking time to share their experience with me. It helps to feel you are not alone.

Hi all, I had a port placed in the left side of my chest, just below my collar bone, yesterday afternoon, right after lunch. I was home by around 3:30 and slept the rest of the day in my recliner. I absolutely could not stay awake because of the anesthesia, which I believe was a blessing in disguise. When I finally got in bed last night, I could NOT lie flat because it hurt too badly and I felt like I could not breath. I spent all night propped up on a bunch of pillows. Today, I have I had a considerable amount of pain but not in the area where they put the port. The pain is in the sternum (breast bone) area all the way down around and under my left breast. It also radiates into my left shoulder and back. I CAN NOT take a deep breath because it hurts so badly to do so. I do not feel like I can get a good deep breath, even if I force myself through the pain. It feels like the whole left side of my chest is tight and there is a lot of pressure, very similar to when I had my gallbladder removed and they filled my abdomen full of gas during the laparoscopic surgery. I also feel very anxious. Despite my normal pain meds of 40 mg Oxycontin, which I take twice daily, and the Percocet 5/325 he gave me yesterday, I am still having a lot of pain and pressure. I called my surgeon today because I was concerned about a possible pneumothorax. He said that the post-op x-ray (which they took in recovery as soon as I was awake enough to sit up) looked fine and that if I had a pneumothorax, it would have been visible on it. I looked and looked online and all of my symptoms are spot on for one. So now I'm coming here to ask all of you who have had a port -- what kind of pain you had after your port was placed?? Did any of you have a pneumothorax or hemothorax? Any other advice from anyone in the medical field? I'm a paramedic, so I know just enough to worry about it!! The doctor said if it continued to go to the emergency room to have them check my heart but I am pretty certain it is not my heart because I know what cardiac symptoms are and they don't increase with inspiration. Any ideas????

I had really bad side effects taking Lyrica. At first it made me very, very dizzy and shaky. However, I continued to take it per my doctor because she assured me that the side effects would lessen and it would help. It did help the pain. It works wonders on pain, but the pain relief was not worth the nightmare that I went through on this medication. I gained 30 pounds in about 3 weeks! (I was not a big person, I only weighed about 130 lbs.) I had a lot of anxiety and hot flashes and worst of all, I had significant abdominal swelling that made me look 8 months pregnant. At first it was thought that the IV fluids I take daily was the source of the swelling but after multiple tests, they determined it was the Lyrica. I was taken off the medication but even after only being on it a few weeks the withdrawal from it was very nasty. I had very horrible depression, almost suicidal. I continued to have hot flashes and severe anxiety/mood swings. I have also not lost any of the weight even after being off of it for more than a month. I would never recommend this medication to anyone. It is just not worth the risk, IMO. Good luck and I wish you all the best.

I'm very glad your husband finally got the right diagnosis and is now home and recuperating! It is always amazing to see what the Great Physician can do when we go to Him in prayer! Blessings,

It is pretty cool. I wish they had one more specific for people who have Dysautonomia w/o CFS or I wish it didn't state you can't copy and insert your own diagnosis in there. I might copy the one that says ID - Invisible Disabilities. Thanks for the link!

I do something very similar to this quite often, especially if I've been awake in the morning and then go back to sleep OR if I take a nap in the afternoon. I, too, have been told that it is called 'sleep paralysis' and has something to do with the different sleep cycles. When I have these events, I usually know I'm 'awake' but I can't speak or yell and sometimes I 'think' other things are going on around me. I've often been fully aware that I was on the bed but thought the phone was ringing or someone was ringing the door bell but I couldn't make myself get up. Sometimes I even think someone is in the house and I can't get up. It is very strange because I KNOW I'm awake but I still have some type of 'dream' going on. It is quite frightening at times! Here is a link that tells a little more about it. SLEEP PARAYLSIS

I have had severe problems with sleep for a very, very long time...mostly due to pain. Many years ago, I was put on Restoril (a drug in the class of benzodiazepines) and it worked great. I slept like a baby. The problem is they never told me how addictive it was and how dangerous that class of drugs is. Eventually it quit working at the initial dose and they kept kicking the dose up and up to help me sleep. Then Ambien came out and they switched me to it. It worked for a while but it, too, quit working. Back to the Restoril I went, but still at a higher dose. I finally had had enough of taking drugs to sleep and decided that I wasn't going to do it any longer. So I just quit taking it and thought I'd just suffer through a night or two not taking anything. BOY WAS I WRONG!!! I thought I was going to die!! You can't just stop this type of drug. It can literally KILL you! So, I went in to see my doctor and he switched me to a drug he said would be easier to wean off of....Klonopin, another benzo. That was about 5 years ago. He put me on about 4 mg of Klonopin, the equivalent to the amount of Restoril I was currently taking. I have since successfully weaned down to taking 1 mg every night but I can't manage to get any lower than that and still sleep some and not suffer w/d symptoms.......and trust me, I don't sleep well with that amount but I'm not about to go any higher! The reason I am telling you all of this is that I want you to be VERY careful about taking sleep meds. Most ALL of them are very, very addictive...even if the doctor, the label, commercials or anything else tells you they aren't. Some are OK if you are taking them short-term for problems such as a short illness, taking care of a sick relative, short change in job duty with night shift, etc. But they are very dangerous for long-term use. The worst ones are any in the benzodiazepine class......Restoril, Ativan, Xanax, Klonopin, Dalmane, Valium, Prosom, to name a few. Even if you take them at the prescribed dose and never 'abuse' them, you can still become addicted/dependent and have severe withdrawal symptoms, even if you don't quit taking them!!! Your body builds up a tolerance and thinks it needs more. This is the WORST withdrawal you can ever experience....even much worse than narcotic withdrawal. So, just take my opinion for what it's worth. Google 'benzodiazepine withdrawal' and read about it. When I saw Dr. Raj last week at Vandy, that was one of the first things he said to me as he was reading over my med list. He said he strongly recommended that I get off the Klonopin. He started to explain what I already knew about the medicine. It is bad. He said that these type medications will not let you get into the REM (rapid eye moment) phase of sleep, where you really and truly REST!!! He said that is where a lot of our brain fog comes from; lack of sleep. Whether it is from pain, insomnia, medications, whatever, we need sleep and we have a hard time getting it. Thus, brain fog. He also mentioned how bad the withdrawal is. He said that most insurance companies won't pay for you to be admitted to the hospital for withdrawal from narcotics but they WILL for benzos because withdrawing from these can kill you. So, I'll get off my soapbox now! ;0) He strongly recommended I see a good sleep specialist and I will. To get help for sleep and help with getting off the Klonopin....something I've been trying to do for a very, very long time. Good luck to all of you who are suffering with sleep problems. I honestly feel your pain. Blessings,

Thought I'd provide an update on my Vanderbilt Clinic Visit.... Well, we left our home at 6:00 a.m. Thursday morning (3/20/08) and arrived in Nashville just in time for my 11:15 Autonomic Function Testing. We had just enough time to grab a quick bite to eat at the McDonalds located at the hospital before my appointment with Dr. Raj at 2:00. EVERYBODY we came into contact with was absolutely wonderful and eager to help us in any way. From the 'free valet parking' attendants all the way to the doctor himself, we couldn't have asked for any better customer service. It was truly amazing! I will try to give you a quick run down on what all they did and what they were able to tell me. The short and simple answer is I don't know much more than I did before I went but they ARE trying to narrow some things down. I won't get most of my results for a couple of weeks because Dr. Raj will be on vacation next week, but he did confirm on Thursday most of what we already knew. I have severe autonomic dysfunction/POTS. However, Dr. Raj says that most people who have POTS don't usually have frequent syncope like I do. My heart rate goes up and in the past my B/P has dropped.....but during the AFT testing, my B/P went really high as well. So, he said that is unusual though not unheard of. As you know, there is no known cure for it. (He said he hoped we didn't come there hoping he had magic fairy dust that he could sprinkle over me to heal me, because he didn't -- which we already knew! Frowner ) He explained how this is our life now and that while some improve with lifestyle change, meds, exercise, etc., it is also quite common to see little or no change. It all depends on each individual patient. He gave us the typical lifestyle change tips to try. He prescribed Inderal 10 mg to start (which I've already tried in the past but he wants me to try again in addition to the Florinef), he ordered waist-high compression stockings and he wants my cardiologist to get me started in a cardiac rehab program -- where I can start doing water exercises where I'm supervised and will basically be lying horizontal and not have to worry about becoming unconscious! But he doesn't want me to start anything new except the meds and stockings for 3-4 months. I go back to see him in 4 months. After discussing my history further he ordered a ton of labwork and asked that I stay another day and have further testing. He wanted me to have another TTT to see if they could recreate my syncope. (I'd had a positive test back in September but they did not use meds and I did not pass out.) He also ordered a blood volume test to see if hypovolemia is a problem, which I truly think it is due to my chronic dehydration and diarrhea, and a sweat test. I was amazed at how quickly he was able to get these test scheduled in such short notice as it was nearly 5:30 and we all know how busy these places are! The only test they couldn't arrange was the sweat test. I will have it when I go back in July. I not totally positive that I really know all of the labs they drew but I know they drew 15 tubes of blood! I know they drew the following labs: *Catecholamines and Norepinephrine (after I had been lying and then after I had been standing for 15 minutes) *DNA *Complete blood count with platelets *Complete Metabolic Panel *Paraneoplastic Profile The gazillion tests/labs will hopefully tell us a lot more. The only one I already know part of the results of is from the TTT; they were successful in recreating my syncope but only after giving me nitro. My syncope is usually brought on with activity, not just standing so I'm not sure how much that will mean in the whole scheme of things. Needless to say, I am EXHAUSTED from the trip, the tests and just the whole emotional part of it. It was very depressing even though I already knew most of what they were going to say. If you have any questions or want to know more specific details about any of the trip or tests, please feel free to ask here or PM me. Thanks to everyone for the info they provided before I left. I truly appreciate it!! {{HUGS}}

Hi all, I am making the trip to Vandy tomorrow! YIPPEE! I am both excited and apprehensive. I'm excited because I am finally making the trip and I will be seeing some of the finest docs in the world for our condition. I'm apprehensive because I'm afraid I will get there and it will be a 'good day' and they'll tell me they can't find anything wrong and they can't help me! I'm also apprehensive about the trip. I have a very hard time making a long trip. I just don't do well. We live in Georgia, so we are planning to make the 4 1/2 hour drive up in the morning. My appointment isn't until 12:30 our time, so we should have plenty of time to get there. I would love to leave tonight and spend the night up there but I just don't think DH will be home in time. We may stay overnight tomorrow night since it will be a very, very long day! Anyway, I have a couple of questions! (1) If you've been to Vandy, can you recommend a good place to stay if we decide to stay tomorrow night? I want something that is CLEAN and NICE but isn't over-the-top pricey. I've heard several of the hotels offer a medical discount. Does anyone have any good experiences to share?? There is also the possibility that we may drive down to Chattanooga and then sleep. That's another option. Any ideas for Chattanooga? (2) Any good tips for traveling? I haven't traveled in a good while and the last time I did, it wasn't pleasant and I wasn't prepared. Any suggestions would be appreciated. I tend to have problems with pain, dizziness and nausea the most. (3) Are there any medications that you know to specifically avoid before testing? I know I'm not supposed to have any caffeine for 48 hours before or any of my regular meds for 3 hours before. I currently have a cold. Will any OTC meds affect the results that you are aware of?? I've read ALL the paperwork they've sent but they don't list anything specific. (4) Can you tell me more about the Autonomic Function tests? What are they like? Is there anything I can do to prepare for them? ANY advice, recommendations, comments and prayers would be greatly appreciated! {{HUGS}} ETA: I AM GOING FOR A CLINIC VISIT AND I WILL BE SEEING DR. RAJ.

I've been away from internet communication for a few days, so I thought I'd bump this back up. Anyone????

Ditto to what everyone else has said! These are two very different drugs which produce almost opposite effects. The only thing I have to add is that Provigil is VERY expensive and a lot of insurance companies will NOT pay for it unless you have a confirmed diagnosis of Narcolepsy. I have worked in family practice for many years and we have a very hard time prescribing this medication because, although most patients are pleased with the results it produces and would like to continue taking it, their insurance company just won't pay for it. So, first of all, you need to confirm why he asking you to make a choice (what exactly do you want to treat?) Then, if it's Provigil that you would like to try, make sure your insurance company will pay for it!! Good luck!

I'm going to check this out. I stay sooooo cold and I always have been! Like right now, I am sitting in front of our woodburning stove with the blower on high, I have on two layers of clothing, a blanket and I'm lying against a heating pad.....and I'm still chilly!! At night I still have on two layers of clothing, I have sheets, an electric blanket (turned way up high) and a comforter on the bed and we usually leave our heat on 68 (and the WB stove continues to blow).....and I'm still cold. I dread having to get out of bed at night or go outside during the day. I am just miserable! I'm willing to try almost anything!!!

Right before Christmas, my old laptop bit the dust. I had all my bookmarks and passwords saved in there. Now I'm not able to access an old email account that I had Bonnie's email address in. I was awaiting an email from her telling me when my 'reservation' would be at Vandy. She said it would most likely be this month (January). Can someone please give me her email address? I really need to get in touch with her! Thanks so much! Blessings,

I, too, experience extreme nausea but it usually comes when I have my bouts of diarrhea or if I'm hypoglycemic. Have you had any recent med changes? Do you have a problem with hypoglycemia? Is there any chance you could be pregnant? Just a few things to think about. I take Phenergan pretty regularly for this. Thankfully, I've gotten past the point of it making me incredibly sleepy. Hope you feel better!

I have not personally taken Celexa and don't know anything about how it affects POTS. However, I thought I would add that my father has taken it for years and it works great for him.....depression, anxiety and side effects from having his prostate removed due to cancer. I will tell you that a lot of doctors are now pushing Lexapro over Celexa. (Lexapro is the sister, so to speak, to Celexa.) (1) Because most have samples of Lexapro to give and then you eventually buy a prescription for it. Makes the drug reps happy! (2) Lexapro is said to have a lot of benefits over Celexa. It supposedly is more quickly absorbed resulting in a more rapid response than other SSRIs. It is also said to be more tolerable (LESS side effects such as nausea, insomnia, sleepiness, increased sweating, fatigue and sexual dysfunction). My father would beg to differ on the side effects issue. Lexapro made him very sleepy and he DID notice increased sweating not to mention his deep depression returned that had subsided with Celexa. It should also be noted that Celexa has a generic. (Some people prefer those due to financial reasons and some absolutely will not take a generic! I can't argue with either side! ) This is probably not the information you were looking for but I thought I would mention it in case a physician attempts to switch you in the future. I have absolutely NOTHING against Lexapro and have seen many patients benefit from it greatly. But IMHO, if Celexa is working for you, really think about it before you swap to Lexapro! Blessings,