pickledfairy

Jackie, I can totally relate on the nausea issue. I have severe gastroparesis and am dependent on TPN for nutrition, but the nausea is relentless. I have tried many antiemetics and due to having dystonia I can only take a few safely. I found that when I switched from 8mg of Zofran pills to 8mg of Zofran ODT (orally disintergrating tablets) I can usually make it 4-5 hours between doses. It certainly works more quickly. Sometimes I have to take Benadryl too, but hate to because it makes me so drowsy. This is just a thought, since I wasn't sure which form of Zofran you were taking. I wish you all the best, Sheridan

Just a little note to let you know that I will be thinking of you. Praying that this is a quick admission and that they get those little beasties under control quickly!! I will be sending you lots of healing energy!!! Sheridan

I am not necessarily on them prn but I am able to titrate them as needed because I struggle with controlling my heart rates (usually 90 sitting and upper 100s standing) with out them but my BPs have changed significantly over the past year (used to be always high now usually run pretty low) So, now I have a 10mg tab of inderal that I can split and take only 5mgs when my BP is running too low. I used to have to be on upwards of 300mg bid of toprol. I still don't get great HR control on this low dose, but it beats syncope and presyncope all the time. They are thinking right now my BPs may be a result of being very anemic, but no doc seems to want to take responsibility for treating it...grr...seeing neuro, GI, and PCP this week...someone is going to take this problem on! Sheridan

I have always been crippled with motion sickness from the age of two. I can't even play video games...my former patients used to think it was hilarious and would always challenge me to a game knowing they could beat the pants of me!!

So sorry to hear about you being in so much pain Angela...sounds like Dr. C has a lot of explaining to do!! I wanted to tell you that my device does make my whole stomach jump at times and especially in certain positions, it is very disconcerting and uncomfortable. I assume it is because it is "maxed out" in terms of voltage, so I have never brought it up as a concern, perhaps I should since no one has seen the device do such a thing. I had pain at a "9" for about a week after surgery, but not spasming type pain like yours. Mine was more like when I would move I could feel the device shift in my body...creepy and painful. I will be praying for pain relief and that the Medtronics company will be able to help you before Dr. C. gets his buns back in town. He is kind of on my poo poo list right now too...I think it has someting to do with the new secretary and him not getting messages. Praying hard for your relief. Sheridan

Tearose, So sorry to hear you experienced such a scary episode. I hope the bladder and heart issues can be taken care of swiftly. Thinking of you. Sheridan

Thank-you all for your warm wishes and positive thoughts!! As of this morning things have changed completely! My doc was called by my insurance company today and was told that they do not cover nutritional support of any kind. My doc is trying to appeal, but we don't know what the outcome will be. So, no line on Friday. I am very disappointed and can't help but wonder how much weight I have to lose before I can catch a break (now down 55lbs in 5 months). I just want to halt this weight loss and gain back some energy....I want to be able to walk up the stairs or get out of the house for an appointment and not have to recover in bed for days afterwards! Medicare doesn't kick in until June (which I hear has its own issues with nutritional support) and if we wait until then, at this rate I will be a skeleton. Sunfish~thanks so much for all of your input, it has given me a lot to think about in terms of the g/J tube issue, and now I have the time to think about it all. I'm glad it is working for you right now and giving you the ability to gain back some weight. Even if it doesn't last for the long term, like you said at least you have given your liver (and yoursefl) a bit of a break from the TPN. Thanks again for your support eveyone....it means a lot. I will keep you posted. Sheridan

Thanks for the warm thoughts!! Sunfish~ We have discussed a G-J tube or just J tube, but I have severe colonic dismotility as well as small bowel bacterial overgrowth that my doc feels would interfere with my getting adequate nutritional needs from a feeding tube. My surgeon did not think a PICC was the best option for me because of the risk of clots and as he put it "I have more patients who have to have multiple PICCs in a short time period than those with a Hickman or port-a-cath". We originally talked about a port, but he thought a Hickman would be best as the port would have to be accessed 24/7 (with needle changes of course) and would not be any less of a risk than the Hickman. Thanks for the thoughts about home health and finding the "right" nurse. Luckily, I worked in pediatric oncology before getting sick, so I am at least comfortable being around central lines and have also done a lot of medical play with my patients surrounding dressing changes etc. Although I have to admit it is completely different when it is yourself that will have to be dealing with the line. I hope I answered you questions....going to check out the Oley foundation web page! Sheridan

Hello DINET friends, I have not been active on the boards for a bit now, as I just can't seem to get the energy to sit up at the computer long enough to read as well as reply...sorry for this lack of participation. I am continuing to have severe problems with my gastroapresis and "stroke like episodes", which has been frustrating to say the least. My docs have decided it is time to start TPN (total parental nutrition) and I will be admitted on Friday at 1pm to have my Hickman catheter placed and to start the TPN. I could use all of the positive thoughts and prayers I can get, I am feeling a bit overhwelmed at the changes happening. Thanks in advance for your support...you all are a great group of people and I am blessed to be a part of this community. Sheridan

Good luck Amy...we will be thinking of you. Sheridan

Good Luck Angela!!!!!!

WELCOME MAGGY!!! I am so glad you have found us. You will find this is a very compassionate and informative group. Sheridan

Just wanted you to know I am thinking about you Melissa.

Congratulations Michele....what an amazing accomplishment. Your DINET friends are Very proud of you!!!!

Pat and Doctorguest, Thank-you so much for your replies. I am glad to hear that the PO tablets are not "horse pills" and will certainly be discussing them with my doctor instead of the IM injections. It is very encouraging to hear of the fgood results from oral supplementation. Doctorguest-My PCP says that it is a shot in the dark that the B12 is the cause of the episodes, but we are still hoping . I had a sleep deprived EEG yesterday, perhaps that will reveal answers as well. My neuro thinks that the episodes are a result of poor perfusion to the brain brought on by dehydration from the GP which is compounded by the fact that I was already hypovolemic to begin with (very low in both plasma and red cell volume). The explanation makes sense. He thinks IV fluids daily will help, but we are holding off in hopes that my gastric pacer will soon begin to work (have had it for two months now) and I will be able to drink more PO. I will keep you posted. Thanks again, Sheridan

I have done searches on the site for B12 which has been a very prevelent topic, but I have a question that wasn't really brought up yet. I heard from my doctor today that my B12 level is 167 (ref range at this lab normal is 200) and I am scheduled for further testing to see why this has occured. My question is for those with gastroparesis and/or dismotility issues. Which form of replacement therapy have you determined is best for you IM injections monthly or oral supplementation? My doc is leaning towards IM because of how low the number is, but we are wondering if in the future I could switch to PO. I am wondering if because of the nearly nonexistent motility of my stomach and since the small intestine is where B12 is absorbed, would I even get any benefits from the oral supplementation (not to mention the esophageal dismotility making it hard to swallow large pills)? We are hoping this result explains the episodes of slurring, twitching, numbness, confusion, jaw clenching, and ataxia. I am keeping my fingers crossed this is the answer as I have nearly two episodes a day and they are taxinf on me emotionally and physically. Thanks for the help and sorry for the bit of redundancy, Sheridan

Coughing, rolling over in bed, singing, laughing, and yelling all make me VERY tachycardic. Plus if you are sick that could be contributing as well. I hope you feel better soon. Sheridan

Nina, thank-you for sharing. I just wanted you to know that I will be thinking about you during this time of waiting and changes. Sheridan

AWESOME!!

Hi Elle, I take 20mg of Domperidone 4x a day for gastroparesis, I have been on it since April. I have not noticed any of the side effects mentioned on the labeling. Unfortuately, it has not helped my gastroparesis symptoms (nor did any of the other drugs I tried)and I am scheduled to have a gastric pacer implanted next Wednesday. I do know people from another board I am on who are on Dom and they have had significant improvement of their symtoms, especially nausea. I do not know if it works on the lower GI system as well as the upper. I take Mestinon and it keeps my lower GI system running smoothly, if I do not take it I notice a change immediately. So perhaps you can mention this drug to your doc if they haven't recommended it to you. I wish you luck with the Dom and am keeping my fingers crossed that it will help relieve your symptoms. Sheridan

taylortotmom: I have been wondering about the dehydration issue as well. Especially since my neuro tested me while in the hospital in Dec. and explained that my POTS responds better to rapid fluid induction (i.e. he squeezed in two liters over a short period of time) than drinking them , perhaps because of the GP. I see my GI doc this week and I will talk to him about the episodes and the possiblity of getting IV fluids. Doctorguest: My GP ran a CMP with P04 and magnesium last week, I haven't heard the results yet and plan on calling tomorrow. I will let you all know what I find out, thanks so much for your suggestions. Sheridan

Thanks for all of your kind words and support!! I have had another pretty bad episode today. It is so disconcerting when I realize that every word out of my mouth is jibberish and that my muscles are shimming like they are at an all night disco fest! Hopefully, something will pop up on my labs to lead us in some sort of direction. I can't wait to see my neuro next week!

Just wondering if anyone can shed some light on these odd symptoms I have been having. The symptoms are slurred speech, numbness in my tongue, feet and cheeks, blue cold toes, muscle twitches in my calves, arms, chest, and face (only right side of face), generalized weakness, and feeling like I am in a dream state. The symptoms generally last for 15-60 minutes however, my legs are weak and I stumble and loose my balance for hours afterwards. These symtpoms often wax and wane and althougth I have kept track of when they occur, I can't seem to pin point a specific time, incident, food, etc. that is triggering them, it seems they come on at random, although I have noticed that after physical activity they are always present. I have tried drinking Gatorade, eating honey and other tricks to help, but they don't seem to have much of an effect. I been to the ER once for these symtoms and they were almost gone by the time I saw the doc and they did labs and found that only my PO4 was off so they gave me IV fluids and sent me on my way. I saw my PCP on Tues and she is running labs but thinks that unless we draw the labs during an episode then we may not catch what is happening. I also have pretty severe gastroparesis, where I am basically on a liquid diet and am having a hard time keeping my nutrition up and it is nearly impossible to get all of my fluids in in a day without throwing them back up (I am seeing a surgeon on Tues and hope to have the gastric pacer placed this summer). So, I am not sure if my nutritional status has anything to do with all of this, but I guess the most recent labs will rule this factor out or in. Any suggestions, thoughts, etc. would be helpful as I am getting frustrated and my parents are becoming worried. Thanks, Sheridan

Welcome! I know you will find that everyone here can relate to what you are experiencing, and I know for me that made me feel less alone and fearful of my condition. This is a warm bunch of people and you will feel right at home quickly. So, welcome again. Cheers, Sheridan

My pulmonologist would prefer me to stay away from betas because of my asthma, but unfortunately my HR with anything other than betas is over 200 and not condusive to anything other than being flat on my back in bed. So, they have agreed that the asthma seems to be the lesser of the two evils, so I remain on 100 bid of Atenolol and check my peak flows 2x a day and am religious about my asthma meds. So far so good as long as I have my rescue inhaler around for emergencies. I am a bit concerned about this Spring and Summer as it will be the first allergy season I have been on such a high dose of betas and my allergies tend to induce asthma attacks....so fingers crossed. Sheridan