Poohbear

As you know, we are all so different and thus, medication trials are just that....trials!!! Having said that, I am sensitive to many many medications and metoprolol is the one that I CAN take. However, I learned the long, hard, slow way that tiny doses are all I need. I have my metoprolol compounded and I literally take 1 to 2 cc's which is equivalent to 1 to 2 mg. This is enough to bring my heart rate down when needed but still small enough where I don't have side effects or asthma from the BB's. Compounding my medications has been a life saver for me and this may be something you want to look into at some point as well. Thoroughly check out your compounding pharmacy and practices though. Good luck.

Here is a new Pub Med Abstract you may want to read and think about further. http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

Hi! I'm sorry you are dealing with all of this. I can relate! Dr. Abell in Jackson, MS Does do a temporary one week trial of the gastric pacer to see if you tolerate it and it helps. Like so many other things that happen with folks like us---even if it works initially, there is no guarantee it will continue to work for the long haul. The bad news is Dr. Abell has a very lengthy wait list--I think it's up to 9 months now. I know several (diabetics though) who did well with gastric pacer initially but after a year or two it stopped working for them. It also seems there is a much higher % (compared to cardiac pacers) that fail and have to be replaced. I'm not sure why this is or if the mfg has even figured that one out. In terms of diet. I was recently at a research facility and the dietician gave me samples of this stuff called "UNJURY". I have a lot of allergies and sensitivity to carbs. It is a powder supplement so it would be liquid but you may want to try it. If you want more info check out their web site www. UNJURY.com

You know you have dysautonomia when.... Your Dr's office has to call you so often that they program your home number into their speed dial!!

It was pulled due to safety concerns; increased risk of chest pain, heart attack and strokes. http://www.fda.gov/bbs/topics/NEWS/2007/NEW01597.html

I'm glad the Easter kitty got to see you last week. I've been thinking about you and keeping you close in thought and heart. I hope you are getting good care and that you will get to be in your own bed soon

I get domperidone from my local compounding pharmacy as well with no problem. Compounding pharmacies in the U.S. do and can legall carry the drug and can make the rx for you. Reglan was awful for me. Choices are slim right now though especially now that Zelnorm was pulled a few weeks ago.

The FDA also requires the manufacturer to notify YOU if your pacemaker or defib. is under the recall notice. So this is also a reminder to make sure you always have your updated medical card from the company and that you keep them informed of address and phone number changes.

I also wanted to say THANK YOU Doctorguest. Not only for sharing your knowledge and thoughts on the board with us but for the many ways I'm sure in which you help people with ANS issues!!

Melissa, Still keeping you in my thoughts and prayers! I hope you are adjusting ok to your new room and that you have lots of bright and cheery things around you.

Yipppeee!!! Welcome Home! I'm glad you are finally home. I know it can take a long time to get back "into the grove" (even though our grove isn't fast speed or anything). Please take good care of yourself and don't overdo it too quick. I look forward to catching up with you when you have more energy and feel up to it. You have been missed SO much!!!

Ernie, I hope you are home safe and sound by now and getting the help you need and deserve!!! Big hugs coming your way!

Sweet Melissa, I wanted to share this with you--Sunday night I was at a small group discussion and the question was asked around the room, "Who do you think of in your life as a hero" and my answer was YOU. I know you have your struggles and at times must feel overwhelmed, frustrated and a host of other emotions that would be natural for you to have given the circumstances. I think of you as a hero because you have such a beautiful spirit, you are able to be real (both here on the boards and on your website) by tactifully telling people what is helpful and/or not helpful, you continually educate and inspire people you come in contact with---I could go on and on I've not been through anything close to what you've been through but I have some sense of how difficult the daily fight can be (from my perspective) . So you are a hero in my eyes because not everyone is able to endure these unfair trials and remain as sweet, thoughtful and inspiring as you have been. I hope today is a better day for you and that tomorrow and the days following will be successively better. Sending lots of hugs your way. Love, Poohbear

I was blessed to be able to speak with Melissa briefly today and got her permission to post an update. The current plan is that she will be moved later today to another facility. This new facility is more along the lines of a short-term nursing facility that can continue to provide the nursing care she needs until she can go home. Unfortunately, her situation remains extremely difficult and the reality is that it most likely will remain that way for the forseeable future. That's not to say she won't have any improvements at all but so far, the improvements are rather small given the scope of her overall situation. I know many of us here can relate in some ways to being sick all the time and the daily frustrations of living with a chronic illness but truly, Melissa is fighting and struggling far more than most of us can even begin to relate to. Our sunfish is a beautiful, courageous person and it should go without saying, given everything written above, that she needs and welcomes all the support, prayers, good thoughts, and love that we can give. I'll wait until I know for sure that she's been transferred before posting the newest address.

I sent you an email

The address I have is: University Toledo Medical Center 3000 Arlington Ave Toledo, OH 43614 If someone can verify this that would be great but it's what I was given a couple of days ago. **Melissa, I hope you are feeling better than you were and have been able to enjoy the company you had. HUGS! Poohbear

Unfortunately, it's hard to know until you try the med yourself because we are all so different. I initially did fine with Compazine but it no longer works for me. Amitriptyline is Elavil (a tricyclic antidepressant) it might work however, if you have hyperadrenergic POTS it may be more reactive in you so if you decide to try it you may want to start out much smaller than 10mg. It can be given in liquid so you may want to ask for the liquid form so you can more easily titrate the dose. Good luck.

Hi! I had a couple of thoughts while reading your post. #1 I DO understand the uneasiness and skepticism in taking medications. At the same time, be careful not to set yourself up for failure. It can take a while for any new medication to work and for your body to adjust. Sometimes I think we are tempted to stop a med at the very first sign of any discomfort and yet, a large % of the 'healthy' population has side effects that are quite unpleasant at first. Try to give it a fair trial. #2 It seems like many of us with autonomic issues are very sensitive to medications. I have read journal articles that do discuss the use of these SSRI's in short term use as you describe for PMS. It may be that you would get better benefit and adjustment if you try taking this medication all the time. Of course you would have to talk to your Dr. but after 2 or 3 weeks of a small dose hopefully your body will have adjusted to the medication and then it may take a couple of months to figure out if it's helping your PMS symptoms or not. I hope you find something to give you some relief!

Melissa, You are physically far away from me but you are ALWAYS close in heart, thoughts and prayers!! Get out of that place soon or I'll have to come sing the song I sent to you (and I don't think you want to hear my singing!). Seriously, I know you and your Dr's are working hard to get you better. I know it's an emotional roller coaster as well so I hope you have whatever YOU need to feel best in that aspect as well. I love you! Poohbear

I'm posting this for Emily as she is worn out and feeling so yucky herself. She spoke to Melissa's Mom last night and this is what we know right now..... "She is responding to the abx for the sepsis and the pancreatitis is improving, however, her mom said that there were many other things going on yet to tackle and I do not know what all of those things are. She handed the phone to Melissa and I was able to just say hi, hear her voice, tell her I loved her and that was about it. " One of her Dr's had a lengthy visit with her and they are happy with the team of Dr's that Melissa has right now. She is now in a private room which is also much better for her. I know many of us feel helpless sometimes but I know your posts, emails, cards, good thoughts, love.....the ways in which we can offer support do help--- so keep those coming!! Thanks Em, for keeping us updated!!

Thinking of you and sending lots of good wishes your way. I hope they get to the bottom of this and get you some answers and effective treatment quickly!!

Sweet Melissa, My heart is breaking for you. I was just getting ready to call you and see how your visit with your friends went when I logged on and saw this message. You are always in my thoughts and prayers. I hope you are able to get some rest and that they can control this. (((Hugs)))) Poohbear

You may want to ask them about suturing in the picc and getting rid of the stat lock. The adhesives on the stat lock cause pretty bad reactions in most people with the skin allergies and sensitivities. The only way we ever got my skin to heal was to get all the adhesives off of it. The port, statistically, has the least risk of infection of any of the central lines. But, make sure you understand all the pro's and con's so you can make the best decision. It is nice in that once it is healed you have no dressing (unless you leave the needle in for days or weeks at a time in which case you would have a dressing over it AND by leaving the needle in when the port is not in use you somewhat defeat the lower risk of infection). Once the port site heals you can shower, swim (again, only if the port is not accessed). I have done poorly with my port but it is mostly likely due to an incompetent surgeon. As for the bad veins, mine are awful. I'm even "missing" some of the larger veins we're all supposed to have. The nurses are seldom ever able to draw blood from the port so that's been a problem. I'll probably be headed back to surgery soon for another surgery so the port will probably be removed and replaced at that time. I do understand what you are saying about YOUR need for central access and there are a few of us who rely on these; my comment earlier about using them as last resort is mainly to help remind other people that these central lines have many complications that are not discussed often (this is especially true for folks like us that have a long term need for these types of lines). As you, sunfish and I are examples of people who really don't have a choice to have a line and yet, there are complications (some of which carry significant life threatening complications). Anyway....my previous comment was not directed at you but rather a reminder to everyone in general terms. Good luck with the line issues and I hope you and your Dr's will be able to figure out what your best line option is.

AJVDK, So sorry you are going through this. I can say, "Been there, done that" . It's not fun but I now have a port that is not working either so all of these central lines have their significant risks and complications (which is why it's best to only have them placed when there is no other alternative). Anyhow, I too had the bad reactions and am now allergic to all adhesives of any kind. I had to go to a completely cloth dressing which had to be changed every other day. Ask about that if you need to; it's not a common thing but if nothing else works it's your last resort. How is your picc secured? Is it sutured, using a stat lock or both? That can make a difference too. Hope this week is better.

Thinking of you and sending healing thoughts your way