michiganjan

Have tried the following: compression hose beta blockers calcium channel blockers paxil wellbutrin clonidine lexapro DDAVP (hormone to relieve diabetes insipidus-like symptoms) increase salt intake regular exercise What works: beta blocker works well to lower my standing heart rates regular exercise (small amount) Still experimenting with: lexapro compression hose Michigan Jan Thanks for starting this discussion. Reading what has helped others is really interesting.

I think I posted about my experiences with my cool vest on another thread. I do like mine a lot. And yes, it is possible to wear it under clothes, such as under a tee shirt or button shirt, but you would not want to wear it next to your skin, as it would get the skin too cold. So I have put mine on over a light tee shirt then worn a button shirt on top, however if you do this, prepare to be somewhat bulky. It is cool here in Michigan today. Hip, hip, hooray! I took Jeff to the hospital to get his endoscopic ultrasound this morning and it was fine in the hospital but when they put me in the waiting room where I was supposed to wait, it was very hot in there. I knew if I stayed there I would be in trouble. So I asked to be able to wait somewhere else and they let me go into the prep area and stay with Jeff until they took him away to do the actual test. Then I went back to the waiting area and lucky for me it had cooled off plenty so I could sit there like everybody else. Then I got too cold and wished I had a jacket! Boy, with dysautonomia there is such a narrow band on the thermomoter that feels right to me. However, I am surviving as a cancer caregiver with POTS. I have just learned to ask for whatever I need whereever I am. I was the only caregiver today that got to stay with a patient in the prep room. Michigan Jan

Thank you so much for all who have been praying for my husband, Jeff. He has completed 3 rounds of chemotherapy by now. This morning he had an endoscopic ultrasound. The original tumor in the esophogus has shrunk--basically all that is left is a thickened place in the wall of the esophogus. The doctor did not see anything in the stomach except for 2 red spots. He said they could be where the tumor was (the original tumor started in the esophogus and grew down into the stomach). He also said he could see one lymph node that is affected, but before there were many within the tumor that were affected. He could see about 1/2 the liver but could see no cancer there. That does not mean the liver is clear--he cannot see it as well on a CT scan. On Thursday, we go back for Jeff to get a CT scan of the abdomin and chest. That will show us if there is any change in the liver, which previously had a lot of cancer and we were told it is hard to get cancer out of the liver. We are so pleased to get this report. I will post more next Monday after we see the doctor and get the results of the CT scan. I figure that the chemo did a good job but that all those prayers from all of you is what is helping fight this cancer. On Wednesday, we are going to get our two grandsons and take them to get new shoes. We have been taking them to the shoe store as they outgrow their shoes for awhile now and it is becomming something they expect and look forward to. They are 4 and 2. I feel so happy that we can do this together --that Jeff and I are both well enough to be able to do this. Thank you all again. Please keep on praying! Michigan Jan

I wear a cool vest. I have a white one. It has 4 inside pockets for the "ice" packs. I wear it every morning when I take my little 15 min. bike ride. I also wear a cold wet dishtowl around my neck. It takes both of these for me to ride the bike without getting too hot if it is between 65-75 degrees outside. Any warmer than that and it is too hot to ride . . . period. I also don't ride below 60 degrees because then I am too cold from the wind. Between 60-65 degrees, I wear my cool vest under a windbreaker jacket. This keeps me from getting too cold on the outside. Part of my problem is that I generate heat from the exertion of riding the bike, thus I can be too cold to ride when it is around 60 degrees, but I will still get too hot from the exercise! Anytime I go anywhere, non-exercise, and it is above 75 degrees I wear the dishtowel around my neck with ice in it. Above 85 degrees I don't even go out in the air conditioned car, except of course when Jeff has to go for one of his cancer appointments. Then I venture out with him in the air conditioned car and hurry into and out of buildings. I like having the vest. I think it helps. Michigan Jan

I read a post on here awhile ago from someone I think she was in the UK. She said she was getting a POTS treatment 2x a week at the doctors office and it was keeping her normal. I would like to know what the treatments were? IVs? Michigan Jan

My resting rate is in the 70s lying down and in the 80s sitting. When I get up and walk it goes above 100 and sometimes up to 120. I take a beta blocker. If not on the BB, my rates would be much higher--high 90s when resting and up to 160 when standing up. I once had a doctor tell me that EVERYONE's heart rate goes up the first thing in the morning and then settles down. I also drink a big glass of water as soon as I get up before breakfast. It your heart rate is too fast when you first get up, put a glass of water on the nightstand and drink it a couple of minutes before getting out of bed. Michigan Jan

I have multiple chemical sensitivities and I actually built a house in order to be surrounded by a healthy environment. That was 15 years ago and it has really helped me with the MCS symptoms. After living here so long, I find that I can tolorate some exposure in the outside world. Patti, When we wanted to move to a new house 15 years ago, we visited some model homes. A brand new house definitely causes me symptoms. There is just an overwhelming amount of new materials that are all outgassing together in an entire new house. I couldn't have lived in a new house if someone gave me one. That said, new houses today are not quite as bad as new houses were 15 years ago. They have made some progress since then in building materials. If a new house is built tight, it should have a source of bringing in fresh air and circulating it. Dayna, Do you have a carbon monoxide detector? That is one thing you can test for yourself. It is difficult to test for mold unless you can see mold and then a sample can be tested. Do you have anything new in your house? Michigan Jan

My feet turn purple whenever I sit with them on the floor. They can turn a really dark purple. I have not experienced the white overtones. As soon as I get up and walk, the purple goes away and my feet go back to looking normal. My docs have seen this and are not concerned about it. This is just my experience. Michigan Jan

I did biofeedback for a period of several months a few years ago. I was hooked up to monitors and used relaxation to change the reading of the monitors. In my case they measured heart rate (pulse-ox on a finger), hand temperature and skin wetness (monitors on other fingers), and muscle tension (electrode stuck to forehead). I got pretty good at warming my hands, but couldn't learn to warm my feet. I think it can be done but it is harder than hand warming. I was taught to warm my hands because the hands warm as part of the relaxation process, so if you achieve hand warming, you also achieve the other parts of relaxation. I worked for quite a few sessions on lowering my heart rate. I never could get it. The whole process is helpful in that it does teach you relaxation techinques. Michigan Jan

Welcome Tracy, Isn't it good to find others with the same problems you are having? That is the best thing about this forum. Just hang out with us and you will have a whole bunch of new, understanding friends. Michigan Jan

I have this too. My mind gets ahold of something and just can't let it go. It is obsessive thinking and can be part of an anxiety disorder. In my case I tell my brain to STOP, just STOP. Then I involve myself in something. Jigsaw puzzles work for me or getting on this forum and reading the messages, or writing something on a different subject, or working on my home-based business, or calling a friend and asking about her problems. If you don't want to take drugs, have you ever looked into what is called cognative therapy? There are techniques to shift that thinking pattern. Michigan Jan

To Nina. I, too want to have a good POTS doc nearby without having to rely on Dr. Grubb. I see an EP cardiologist locally every nine months. He has at least some understanding of POTS. However the last two times I saw him, I brought up the EDS connection. His reaction the first time was to look at me and say I didn't have it and his reaction the second time I brought it up was to say, "You don't need any more diagnoses." My conclusion is that he either is uneducated about the connection or he scoffs at it. Otherwise I like this doc--at least he views POTS as a real problem. You and I should make an effort to educate our local POTS docs. Can you find any printable research on the connection? If you can find a good article I will take it to him next time. To Ernie, You can't completely rule out EDS by testing. There is a test for the vascular type of EDS. The test is a skin biopsy. I had that test and was negative and that presumably rules out vascular type for me. The other types of EDS are diagnosed based on physical examimation, history of joint looseness and dislocations, and family history of hypermobility. Based on these, one can be assessed as being hypermobile or as having the skin type consistent with classical EDS. (I believe Michelle's diagnosis of classical type was based on examination and her skin type.) Michigan Jan

Dear Jessica, What if you have yet another baby? What if it is a girl? You could end up being momto2boysand1girl, or momtothree or even mommommom? Sometimes I have this weird sense of humor that just pops out and takes over. We will love you no matter what you call yourself! Your user name reminds us that in spite of POTS you are doing an important job. Hugs to all 3 of you. Michigan Jan

We are not responsible for our feelings. They are neither bad nor good. They are what they are and they arise as they will. However we are can control how we react to our feelings and what we choose to do about them. Our choices fall into the area of bad or good. Michigan Jan

Of course I am praying for your niece. What else can we do sometimes other than to pray for each other. I so appreciate all the prayers people are sending our way for Jeff. Michigan Jan--sending hugs to you, too, Sue.

Love and hugs to Mary from Michigan Jan

Sophia, I will be with you in thought and prayer tonight. When the doctor told me that Jeff has stage 4 cancer he simply stated the fact. Looking back on it, I think that was as good a way as any. The person hearing the bad news will first have to get their mind around it. There may have to be some lag time between just getting the fact and then talking about what must be done and why. Just getting the news is a real stunner. I guess I'm saying don't worry about her reaction to the news. Just let her react however she does and then you can have the planning conversation. You will all get through it somehow. I will be with you in spirit. Michigan Jan

I will be thinking of you and your husband on Monday. Post to let us know what happens. Michigan Jan

I am glad the procedure is over, Julie. Now you will finally have the information you need on what your heart is doing. It is too bad you had to go through that nightmare. I experience some of the things you describe when I have anything medical "done" to me. For me, in addition to whatever the procedure is, I go into panic mode and I feel awful from the effects of the panic. You may have had a combination of both. It is no fun to have a super sensitive nervous system. I also babble like crazy whenever I feel panicked. I had to smile at your description of you going on and on. The two of us should plan to have our medical "procedures" at the same time and place and then we could then hold a gab contest! I had a uterine ultrasound and a biopsy last week. It really did not amount to much but while the doc was taking the biopsy, I felt panic rise. I got jerky and felt like I had to move or at least sit up and shake my leg. That was the last thing I needed to do at the time. The good news is that the biopsy was normal. The other news is that at the age of 58 I am still ovulating and having periods! Ah, well, I am just happy it wasn't cancer. I have enough of that at my house already! Keep us posted on what the loop recorder shows. Michigan Jan

I have had fibromyalia for years. The diagnosis is based on how many painful trigger points you have and where they are located. There is actually a body map of trigger points. If you use just one finger and press repeatedly across areas of your body can you isolate painful spots? That is what trigger points feel like. The trigger points can feel like little knots sometimes. These knots can tighten and pull on joints and make joints painful. EDS stands for Elhers Danlos Syndrome. Just type in the name on any search engine and you will find lots of links. There is also an Ehlers Danlos National organization that has good information. Michigan Jan

Dear Dizzy Girl I have a lot of sympathy for you. I went through much the same thing in the first few years I was sick with POTS. I had friends and even some family scoff at my being ill and thinking I was either lazy or crazy. That was in my early 30s. Now I am in my late 50s. I still have POTS. However I do not have any friends or family who scoff at me. They are supportive. This is because they either changed or I got rid of them from my life. First I made up my mind that it is okay for me to be the way I am. I am a person with POTS. This does not make me less of a person. I have POTS like another person might have diabetes. Then I learned to talk about my POTS in matter-of-fact terms. I say "I have dysautonomia." in the same flat tone of voice as I would say, "I have a broken leg." Then, if the other person asks what disautonomia is I say, "It is a dysfunction of the autonomic nervous system that affects my heart, breathing, blood pressure, and digestion. It causes dizziness when I stand and it causes extreme fatigue. I cannot sustain normal levels of activity and am handicapped, even though I don't look sick. It is not life-threatening, nor is it curable. I will most likely always be this way." Then I stand my ground if anyone tries the lazy or crazy thing. I still use a flat tone of voice and present myself as quite calm. I do not argue. I had one friend who always used to say something like, "I'm tired, too. But I just keep going." I would reply, "Of course. You don't have dysautonomia. If you had dysautonomia you would have no choice but to sit down." Finally, those who did not accept my stance, I dropped from my acquaintaince. This is easier to do with friends than with family. With a close family member, like a mom or dad, who will not accept you as you are, you may have to distance yourself from them and maintain a distant, polite relationship. This next part is going to be easy for me to say, hard to do: If the boyfriend doesn' t get with the program, lose him. Then again, I am a person who won't compromise when it comes to my right to be who I am. I would most likely end up alone rather than stay with an unsupportive significant other. We are all different in our needs. I need to be real and that means being me. Than I can deal with the rest of the world. I was worried at first that I would have no friends. And for awhile, I had only one. However I learned to look for potential friends where ever I went and they were there. Now I have a strong support group of friends. These are substantial, valuable, strong people who love me for who I am (POTS and all) rather than love me in spite of having a chronic illness. Nuff said hugs from Michigan Jan

Amy, Thanks for your thoughts and prayers for Jeff. DI is Diabetes Insipidus. It is NOT at all like diabetes melitus (the more common diabetes) which has to do with insulin. DI is either a failure of the pituitary gland to make desmopressin or a failure of the kidneys to make use of the desmopressin made by the pituitary. Desmopressin is the antidiruetic hormone. It is made by the pituitary and used by the kidneys to concentrate urine. A person with true DI urinates large amounts and must drink almost constantly in order to keep the fluid balance in the body. I, and some others on here do not seem to have a true DI, but do have issues with urinating too much and not concentrating the urine. I do not concentrate my urine, or concentrate it only rarely. I have had some tests done (modified water deprivation test) and I have tried taking DDAVP--the synthetic form of desmopressin. The results of my experimentations has led my doctor to believe that my pituitary works fine and the disfunciton is at the level of my kidneys. I think that in studying POTS and hypermobility that they should also look at the kidneys. To find out more about DI just do a Google search on diabetes insipidus and you will no doubt find inormation. Michigan Jan

Dizzygirl, POTS symptoms can vary from day to day. Have you ever tried keeping a detailed diary of what you did and ate and drank and POTS symptoms? I do think that there are variables that may impact symptoms such as how hydrated or dehydrated we happen to be. Salt intake and amount of exercise or other stimulation may make a difference. I hope you can find a good doctor that won't give up on you. However, several years my doctor gave up on me and there was no such thing as this forum or any doctors who treat people with dysautonomia. I was on my own and actually did make some improvments in my own health by monitoring myself closely and learning as much about my triggers as I could. I guess you could say that I defined my envelop (level of activity and what I need to eat and drink in order to stay clear of bad symptoms) and learned to live within it. This was not easy as I had to change my life and level of activity. Keep on pushing to get the medical help you need and in the meantime do what you can to help yourself. Michigan Jan

I am not a doctor. I don't understand POTS. But here are some things I do know about myself. I have POTS. I have some symptoms of DI, but I really don't have true DI. My DI like symptoms seem to be nephretic (kidney) in origin rather than brain (pituitary gland). Also I talked with a world-renowned DI specialist and POTS is not something that is prevalent in people with DI. I am hypermobile, although not as much as some others I have met with POTS. I have been tested for Ehlers-Danlos vascular type and was negative. POTS is also not associated with ED. When I was only 23, I had my appendix and gallbladder taken out. Afterwards the surgeon told me that I have a generalized tosis. By this he meant that my internal organs are suspended on long, stretchy ligaments. He also told me that my one kidney was loose. I believe it was the left one because he was working on my right side and he said he had wanted to take the kidney and sew it to something in order to anchor it, but he couldn't really get to it. He told me it would drop when I stood up and then fall back into place when I lay down. He said it shouldnt' be a problem unless it got twisted and then I would have pain and know it. Now the rest of this message is strictly my own musings. A few years ago I read the writings of a Japenese doctor who did a small study about the "nutcracker" syndrome" as a cause of chronic fatigue and POTS in children. The nutcracker syndrome is the entrapment of the left renal vein between the superior mesenteric artery and the aorta (I hope I remember this correctly--MIchelle knows a lot about this one--please jump in here Michelle) I emailed the doctor in Japan and asked him how I could be sure this wasn't a problem for me. He asked me to get color ultrasounds and specified how they were to be taken and some were to be taken standing. I tried. I finally got my doctor to order the ultrasounds but when I went to have them taken, the person doing it didn't really understand the views the Japenese doctor wanted. And taking them standing was not an option. However we did get some pictures that I sent to Japan. The doctor there wanted a different view. And he wanted one standing. I consulted with a vascular surgeon here and had him read the pictures. I also consulted with a family member who is a vascular surgeon. The family member told me that when he operates and the left renal vein is in his way he divides (cuts and ties it off) it without giving it much thought and that those patients get along fine as there are other veins that supply the left kidney with blood. And those patients do not then develop POTS. That left me wondering if no renal vein is better than a pinched off one. Anyway, by that time I was tired of fighting to get the test done the way the doc in Japan wanted. I got no support or understanding from the docs here. Okay gang, here I go off on my own speculatory tangent. What if there are stretchy people who do not have Ehlers-Danlos but are just stretchy? What if my tosis and the fact that my left kidney is not even attached to anything means the left kidney is trapped in a nutcracker-like pinch when I stand and that causes the one kidney to either dump adrenelin or fail to make proper use of the desmopression that is sent to it from the pituitary, or both? What if stretchy people have this happen because the kidney is on a long loose ligament? It just bugs the heck out of me that so many of us with POTS are hypermobile and have this odd pseudo DI. I wish we could have a study where those of us with this combination of symptoms could all get the right kind of color ultrasounds standing up to see what does happen to the kidneys when we stand up. I know, I know. This is not at all scientific. And I am not all that smart. I don't have the medical background to even speculate. But has anyone actually studied this besides that small limited study in Japan a few years ago? I have heard that POTS is a brain problem but it seems to me that no one is looking very closely at the kidneys. I should be in bed before I get any more flights of fancy! Michelle, is there any way we could get some medical help to find out if such a study is feasible or even worthwhile? We already have the population to do it. Ultrasounds are not invasive or dangerous. Is there anyone out there who knows the right kind of Doc who is smart enough to decide it this is worthwile or not? And how would they interpret the findings? Michigan Jan who will take her musings off to bed. P.S. Jeff finished round 2 of the chemo--overnight in hospital again. They kept him the next morning awhile as the one chemo drug made his magnesium low and they gave him a bag of it via IV before letting him go. That was on Friday morning. So far he is having a much better time of it than last time. He can actually eat and drink. It's not over yet though because he is wearing that fanny pack that is pumping the 3rd chemo drug in him until Tuesday. He is losing his hair. Will probably be completely bald soon. And he has tacycardia either from the drug or from low blood. Still he feels better than last time and the cancer symptoms are much better. Please keep praying. It is going to be a long battle.

Some cleaning products have fumes that cause me symptoms. There are more ways to clean a toilet than by using noxious products. I squirt a little soft scrub into the bowl and then use a toilet brush. I tolerate the regular soft scrub but do not like the odor of soft scrub with bleach. Bending over can also cause lightheadedness. Michigan Jan