sandymbme

My nightmare began on monday. I had been developing a rash that for several days I had been chalking up to a bad breakout. I have a tendency, especially with my hormone imbalance issues, to have mild breakouts on my face and chest. But monday night the rash spread to my upper arms. I had a moment of absolute horror, because thanks to a nasty roomate 15 years earlier, I recognized the rash on my arms to be scabies. In my horror there was no sleep to be had that night. I called my doctor's office the moment it opened, and they were kind enought to get me in right away. My doctor confirmed my worst fears and prescribed Elimite cream to rid me of the nasty beasties. But the insult to injury to this whole tale is that the exposure came from my home health nurse. I did not catch it at the time, but she did several things that were not in keeping with sterile practices. She would wash her hands using my soap, which is fine, and my towels, which is not. She also used a cloth tourniquet with a clip, rather than the disposable ones the pharmacy sends with my supplies. My mom, who is a nurse, was absolutely furious to learn that the nurse would leave me to disconnect myself from the IV and flush my picc line myself. The care was inadequet in several respect, but this was my first home health care nurse, I just did not know any better. And unfortunately, my mom was out of the country during the three weeks she was my nurse, else the problems would have been caught much sooner. So on tuesday afternoon through evening, I sat for the prescribed 8-12 hours in the cream trying to kill the mites. But I failed to account for the difficulties presented by the picc line. And my home health care agency was no help at all. They tried first to insist I did not have scabies, then to insist the nurse could not possibly be responsible. Seeing as how she is the only person who has touched me in weeks, and her failure to keep from cross-contaminatting me with her other patients, it is pretty obvious to me. When I tried to wash off the cream I made a mess of my picc line. By that point I had not slept in 48 hours, had not gotten my fluids in almost 5 days which is the whole point of this exercise, and was darn near hysterical. I gave up and went to the ER. They gave me a much needed liter of fluids, re-dressed my picc, and sent me on my way. But now I have an on-going problem. I believe the scabies are under my picc dressing as well. The rash, despite my use of the cream, is spreading back out from the bandaged area again. I am afraid that to finally clear this up we are going to have to remove the picc, treat for scabies again, and then put the picc back in. And the picc placement hurt like heck and I DO NOT want to do it again. I am scared silly by the prospect. I am calling my doctor first thing on monday to discuss the problem, but I don't see any other solution. This whole thing has been such a nightmare and the stress has taken a toll on my health. I am once again back to 100/60 BP readins, and daily migraines and nausea. I need the fluids badly, they seem to be the only thing keeping my GI problems in check. I fired the home health care agency and have reported them to the State Board of Nursing. But I am furious. I am contemplating contacting an attorney. And I am absolutely terrified of what next week will bring. I would welcome and words of wisdom or encouragement! Sandy

I have serious pain issues along with my pots. I deal with migraines like many on this site, as well as whole body pain. The pain feels like it is actually within my bones, doesn't really feel muscular. I do a lot worse in bad weather, too. If I can't, or don't want to take pain meds I sometimes get relief with heat. I have a heated mattress pad and I will crank it up and crawl into bed and sometimes that can help. Sandy

So sorry you are suffering so much! It sounds like you are definitely having a rough way to go. Have you seen an autonomic specialist? It takes forever to get in with them, but they can bring a lot of insight to the table. You will find a lot of support here. GI complaints are very common and while yours sound a lot worse than most you are by no means alone. Check out some of the advice on the dinet web site, too. Hang in there! Sandy

I have three tatoos, but all came long before pots. I would consider how you react to pain, it would probably be a good measure of how you will handle a tatoo. The inks are pretty much non-reactive, but by all means seek out a "patch test" if doing something with a lot of color in it. I put a lot of thought into my tatoos, and have never re-gretted them. (And my "newest" is 12 years old!)

It's been a while since I have tried it, but since getting sick the one time I tried my BP dropped like a rock and I fell asleep in a stadium of 80,000 screaming Cleveland Browns fans. Not something I would try again. Made all of my potsy symptoms much worse!

Any loss that calls into question our own frailities can be especially hard to take. I wish I had words of comfort that could magically erase your fear or your grief. I can only echo what others have said, that we do have a great deal more hope here in the United States as far as treatment goes. I hope that you have family here to take comfort in during this sad time. You will be in my thoughts.

You poor thing! I sooooo relate to GI issues. Sometimes I wish I could just remove the whole works and start over! Hope you get sorted out enough to post more often! Sandy

Hang in there! Even when it gets hard, at least it will be hard only on your terms! I went through a heck of a time with mine, and it just keeps on coming, but not a single moment do I regret being on my own, in my own place! I am sending all the support I can muster! Sandy

I don't have any explanation, either, but the same thing is true for me as well. I am much more likely to crash or fall if getting up from the floor. Unfortunately, it is not always something I can avoid!

Thanks for all the imput. I follow up with my PCP on thursday, and am seeing a neurologist that day, too. So we will see what the docs say. I have my first appt with and endo on friday, and a follow-up with Dr. Grubb on Oct. 1, so hopefully someone will have some sort of insight. My migraines have been getting worse of late, not sure what the bp correlation is because I have no means to check at home. I have great doctors, they just don't seem to know what to do with me. I keep developing new symptoms before they get the old ones under control. Still having bloody nose. Not really running blood, but it is bloody every time I blow, and if I blow too hard then it does run blood. Oh well, life with pots is never dull! Sandy

I am overjoyed for you in your improvement! May you have a safe journey home! Sandy

My parents played a huge role. As they are both medical health professionals (nurse and pharmacist) they knew that something was really wrong with me and encouraged me to keep looking for answers. My (now ex!) in-laws gave me a terrible time of it, insisting I was exaggerating, meanwhile my parents were worried sick. In my heart I just knew something was wrong with me, and that I just could not give up.

I am still taking some pretty heavy duty pain meds for the migraine, butr I am managing. Have had a bloody nose all day. Not gushing or anything, just bloody when I blow. I am going to follow up with my PCP monday or tuesday, depending on how soon she can get me in. The BP just freaked me out because it has never come even close to that before! Sandy

So I was chaufferred to the ER today in an ambulance because of a migraine that got beyond brutal. Off the charts pain. They found on the CT scan a fairly bad sinus infection. (which is odd because I finished a 10 day course of Augmentin for sinus issues just 10 days ago) My BP was totally weird while I was there. My BP is usually around 100/70 or somewhere thereabouts. But while in the ER it hit 143/86, totally out of character for me. It has NEVER been that high. Should I be concerned? Am following up with PCP on monday or tuesday, should I try to see someone else sooner? Sandy

Any injury, migraine, cold, etc. has a terrible effect on me. Any physical stressor results in a chain reaction that at the very least causes my pots stuff to spiral out of control. I have learned the hard way to treat pain very aggressively as the consequences of trying to "tough things out" are brutal. Sandy

My body temp usually runs low, 95.2 (my lowest documented) to 98.6 or so. I am the only person I know to have had pneumonia without any fever at all. I am always cold except for the warmest summer days. I always sleep with socks on, no matter how hot it may be my extremities are always cold. My heated mattress pad Mom gave me for christmas last year is an absolute Godsend. My "normal" temp seems to be around 97.8. Sandy

Great thread! It all started for me with increasing GI complaints in 2006. (A mere 22 hours AFTER my health insurance kicked in THANK GOD!) They eventually removed my gall bladder and I really thought that would be that. Just 3 months later, however I got the incredibile never-ending migraine. I saw endless neurologists who dx'ed me with low-lying cerebellar tonsils/borderline Chiari malformation. I was tested for all manner of scary neuro things, but everything came back negative. Meanwhile the migraine kept assaulting me for 9 months straight. I had one truly insensitive doc who insisted I just needed a good antidepressant, clearly I was making this up. My Mom (who is a nurse) suggested contacting the Cleveland Clinic as it is just 2 hours or so from home. I was seen in the headache and facial pain clinic by Dr. Mark stillman who noticed I had very low BP, but relatively high HR. Hr told me right off the bat that he suspected pots and wanted to schedule a TTT right away. When I went home to discuss it with my neuro, who insisted the test would be a waste of time and money and told me not to do it. I followed his advice for a few months longer, at which point I was definitely borderline suicidal and desperate for ANY relief. Called Dr. Stillman to schedule the TTT, and lo and behold I failed with flying colors! Suffice it to say that I no longer see that neuro. I now have a great team of docs in place. My PCP is awesome about co-ordinating care with my six million docs. I still see Dr. Stillman for the headaches, and Dr. Blair Grubb is managing my pots. (which thus far refuses to be managed, but no one is giving up yet!) I see Dr. Joachim for GI stuff, and have appt.'s with a new neuro and an endo next week. I got really lucky, my PCP was an ER doc who went into private practice, so she has seen all kinds of crazy things. Dr. Nicholson is very supportive and understanding of even my craziest or strangesr symptoms. It took 2 years from onset of symptoms to get my dx. I stopped trying to self-diagnose after reading a bunch of scary stuff about Chiari malformation and decided that ignorance is bliss. If not for Dr. Stillman pointing mr in the right direction I would probably still be floundering in misery. Of course, I am writing this right after getting released from the ER for a screaming and horrific migraine, but at least it isn't there every single day anymore! I am still hopeful that someday someone will give me the right combination of meds and other therapies to get at least relatively stable. Sandy

So after reading the posts and talking to my doc, we decided to do the picc line, rather than a port. Someone in the next bed at the hospital today just had a port put in, and I am glad I did not get one! It seemed awfully invasive! I got my picc line today, and while not fun, it was not too awful. But my arm really hurts. Has anyone else had one? How long is it ouchie? Thanks so much for all the info! You guys are an amazing resource! Sandy

I take cymbalta, which I know you said is a no go, but for me a life saver. I take it primarily for migraine prevention and pain management, but the anti-depressant aspect is a nice bonus. I have not noticed any change in my HR on it, but I take a relatively low dose. Any higher dose and I start to get elevated liver enzymes. Have you ever considered trying St. John's Wort? It is an herbal supplement that I used to have success with years ago, and is fairly mild. Just make sure you get a "standardized" supplement so each capsule has the same amount of the active ingredient. Good luck! Sandy

Getting a dx requires one thing above all else: persistance! Pots is not well known or particularly well understood, and getting a dx takes time and perseverance. I am fortunate enough to live close to great doctors, but even in my case it took nearly a year for someone to guess that my symptoms were not in fact unrelated, by reflected autonomic failure. If your current doc won't send you for a tilt, ask for a second opinion. Syncopal episodes can occur for a wide variety of reasons, some of which are quite serious, so don't let your doc blow you off. A cardiac nurse told me just this morning that syncope is starting to be viewed as a much more serious and important symptom, so don't settle for it being dismissed! Hang in there! Sandy

I got the pneumonia vaccine last year and had no issues with it. Because of how complicated my case is, and having a huge history of bronchial ailments, my doc wanted me vaccinated. I had no real issues with it. And I think you just get it every other year or every few years, can't remember...(my memory is sorely lacking these days!) Sandy

I don't have any additional advice, everyone else has offered good wisdom. You did the right thing in reaching out to this community. We will help in any way we are able to. Please consider your kids before doing anything drastic! As long as there is life there is hope! I will also be praying for you and your family! Sandy

Tammy, While I am not totally housebound, I have been losing more and more mobility and independence in the last six months or so. I can't walk very far at all, and need a cane if going more than just a few steps. Some days it seems like just getting the mail is a major victory. I try to stay focused on what I can do, and forgive myself for what I can't. Hang in there! Sandy

I had the hida scan about 3 years ago which showed zippo, but I reacted so strongly to the test that they wheeled me right over to the ER and my GB was removed 4 days later. Every test I had was negative, but the surgeon told me it was chronically inflamed and looked terrible when he removed it. Said I was the strangest case he had ever seen. I so wish I heard that less frequently!

I took Lyrica for migraine and anti-seizure properties, but it caused me such enormous level of fatigue that I could not function at all. I would literally nod off mid-sentence. It did not really impact my migraines, but very little has ever seemed to help...sigh!