michiganjan

Blondie, there is help for you on this forum. We will be your dysautonomia pals. It may take some time for you to find the right meds or combo of meds that will control your symptoms. You have already taken the first step by getting a diagnosis, so you are already on your way to improvement. It is hard to have patience, I know, but there are some treatments that do help . . . it is a question of finding the best one(s) for you. Hugs,

Keep on hanging in there, Julie. I am thinking of you every day. Even if Dr. Grubb can't help with the EDS issues, could he perhaps help with the blood pressure? Are you currently taking any meds to help raise blood pressure? Is ithere a possibility of adjusting the dose? Who can help you address the weak legs issue? Is it possible there could be another cause besides the EDS? Who prescribed the vitamin D? Could you call him/her to report that you can't take it and ask if there is another form that may be better tolerated or another way to get that level up? You are so good at doing everything that is needed to get help, Julie, so keep on with it--even when you are feeling discouraged. You are so strong and brave, that I know you will get through this. Keep on searching for answers until you get the help you need. You have my phone number . . . call me anytime. Hugs,

I am Michigan Jan and I live near Ann Arbor and I wish I could recommend a good doctor for you. My primary care doctor is a bit knowledgable in that he has me for a patient, still I go to Dr. Grubb in Toledo for my POTS and my primary care doc accepts Dr. Grubb's recommendations. I have also seen a cardiologist at Michigan Heart in Ypsilani (also part of St. Joes). This cardio has another patient with POTS and he does have a basic understanding of it, but he does not give me the latest information about POTS and he does not seem to keep up on the latest treatments--I am the one that tells him! So for me, Dr. Grubb (and now Beverly) is the best choice I have. If you can get to Ohio to see Dr. Grubb, I recommend it. I also heard that the U or Michigan in Ann Arbor is going to be having an autonomic testing lab. Maybe this has already been done. The doctors involved may be a possibility. If you find someone closer to me I would like to know it.

Rita, remember that exercise intolerance and fatigue are also common with dysautonomia/POTS. I guess the question is if the OI and fatigue are worse with or without the beta blocker. Also there are many kinds of beta blockers and there are 2 different classes of beta blockers. I have had to experiment with many different ones to find the one with the least side effects.

Cymbalta is dual action, SSRI and norepinephrine reuptake inhibitor. Wellbutrin is a norepinephrine reuptake inhibitor. So the Cymbalta functions like Wellbutrin + an SSRI. Cymbalta is a new drug, so depending on when Dr. Grubb mentioned trying Wellbutrin, it may have been before the availability of Cymbalta. Unfortunately, finding the best treatment for a particular person with dysautonomia often takes trial and error. You may have to live through some of the "errors" in order to find help. However, each step you take brings you closer. Just keep going.

Vanessa, What helps me the most when I get frustrated at how much trouble I have to go through to get help is to keep the big picture in my mind. I tell myself: I am on my way. There are problems. I will fix each problem as it arises. I am on my way at last. Nothing can stop me now.

Dear Babs, This is most likely a dumb question, but I am going to ask it . . . Is there any way you can quit smoking? I realize that quitting is hard, but hard things are just that . . . hard. They are not impossible.

Rita, I have been on a beta blocker for many years. I took Coregard for at least 10 years, then went off and had a couple of years when I did not take a beta blocker, and my POTS was maybe a little better, but I still had the high heart rates upon standing. I decided I was better off on the BB and started Sectral and have been on it at least 9 years at this point. So long-term beta blocker use is doable. I now believe I will stay on this one the rest of my life, as I have tried many different ones and Sectral is the only one that I tolerate. If a beta blocker works well for you, why are you trying to get off it? Beta blockers have been around for many years. They can be heart protective, taken long term. I have asthma, usually a condition that means one should not take beta blockers. However, I need that beta blocker and I also take daily meds for allergies/asthma, and the allergies are not much of a problem.

Jeff weathered the first round of his new chemo which was on Friday. He vomited that night and felt sick for 3 days, but today he is downtown Detroit on the Salvation Army Canteen truck feeding the volunteers who are working the Super Bowl events. He called to check in a few minutes ago and said he felt okay and is having a wonderful time. He will work two more days this week on Super Bowl Events. I am very happy he is able to do this and get out where the excitement is. I hope he doesn't overdo it today, but so far seems okay.

I am not sure where this fits in, but I take Zantac 75 every night for acid reflux. The last time I saw Dr. Grubb, he encouraged me to continue the Zantac because it inhibits mast cell activation. My primary care doctor wanted me to contiue Zantac for the same reason. I am not sure I understand this association correctly. If anyone knows why the Zantac can be indirectly helpful for POTS, please post.

[ I keep trying to tell myself that its got to get better, but it just gets worse. ] One thing about POTS is that it fluctuates. So you may bad now, but you can still get better. I am happy that you are going to the doctor to press the issue. My POTS was really bad in my late 30s and then, all by itself, it got better enough that I did not need meds and could function almost normally for a few years. [This weekend my son got sick, and I feel so bad as he needs his mom and I am just so tired. I would do his breathing treatments and then go back to sleep, wake up and do another, this is how my weekend went. ] Being a Mom is so demanding. Managing to do the job in spite of POTS/dysautonomia is amazing. I am now 58 but I raised two children and I had POTS all the way. It was terribly hard at times, but I made it through. You will, too. [My b/p is gotten so low it will not even read anymore on my machine. I am hoping it will come back it up soon.] If the current program isn't working to bring that blood pressure up, I would keep going back to the doctor until I got some results. If the current doctor cannot help, ask him who can. [They thing that scares me the most it the what if. What if I never get better. What if this is it???] Amy, this is NOT it! As per Ramektesh's message, finally, there are good people who are working on it and they are moving in the right direction. Help is truly on the way! [i have almost tired everything but the IV Fliuds. ] I have a good friend with POTS. When she gets bad, she gets a saline IV and it does help her get up and get going again. You could ask your doctor to explain his/her reasons for not trying it with you, and ask again to try it in the office. My friend carries a letter with her written by her doctor and she has gone in to emergency rooms for saline IV when she needs to and they have done it for her. The good thing about venting is that it gets all those pent-up awful feelings out and allows us to begin again. Hugs,

I am trying it now. I started over a month ago with tiny doses and have just now worked up to the starting does of 1/2 pill twice a day. It hasn't bothered me yet, nor has it helped--well there has been one change . . . constipation! I am taking metamucil twice a day without much help. I have such odd reactions to drugs. Everyone else says mestinon causes their bowels to move faster, but not this girl. I am going to just keep on with the starting dose for a couple of weeks at least then try to increase it again. Has anyone else had constipation with it?

Dizzy Girl, Stay off the upside-down table thingy. You don't want to encourage stomach acid to run up the esophogus. I have GERD but manage an almost no-GERD-symptom life using the following program. I take one over-the-counter zantac 75 sometime after dinner. I have 4-inch blocks under the feet of the head of the bed. I avoid food with much fat, especially after lunch time. I also take something called digestive modulators made by Sol-gar at the suggestion of my doctor. These help digestion take place faster. Also, when symptoms are bad, I take Gaviscon before bed. The Gaviscon forms a barrier that floats on top of the stomach contents and keeps the acid from washing up the esophogus. It works well for some people and not as well as others. Also, when symptoms are bad, try snacking on saltine crackers. A doctor once told me to do this to get relief that the crackers took up the acid. And yes, milk is a poor antacid, but I myself use it at times. One more thing . . . acupuncture did not work for my POTS, but it worked really well for my GERD.

My husband drinks Ensure when he needs balance and calories. He says the chocolate is the best, but he is not overly fond of any of them. They do taste sweet, much sweeter than milk. Jeff's oncology doc says that a person can live off Ensure. While Jeff is getting chemo, the oncologist tells me that he should get 2000 calories a day. Often the Ensure won't do it. You can boost the calorie count of Ensure by adding ice cream in a blender.

Looking away from the computer every couple of minutes and focusing your eyes on a fixed object in the distance can help prevent eyestrain. Also of help are glare screens for computers. I used to have one that stuck over the computer screen with velcro attachments and it really helped. I also think you are on the right track with somehow dulling the overhead lights.

STacy, I am so sorry to hear this news. I will keep him in my thoughts and prayers.

Here is something I learned from a famous doctor who specializes in diabetes insipidus--(NOT the common diabetes, rather a lack of desmopressin--the antidiruetic hormone which causes one to have to drink constantly.) Unless your thirst mechanism is impaired, one should drink to satisfy thirst. The thirst mechanism works to balance salt and water in the body. If you eat more salt you will naturally become thirsty to balance the salt with the water.

LindaJoy, I think your idea is smart. It will take longer to get up to the correct dosage, but you will have less side effects along the way and you will get there eventually.

I was going to suggest drinking during the session or even eating, if possible. I really liked hearing about Dr. Low's water trick. I am going to try that myself. I have learned never to go anywhere without food and a bottle or water. Would a nap earlier in the day make any difference?

D. Blair Grubb is an electrophysiologist cardiologist at the Medical University of Ohio in Toledo, Ohio. His patients (I am one) come from all over the U.S. and even other countries. (I was there one day when a patient had come from Africa.) Phone number is: 419-383-3925

People do not always know when they are having PACs or PVCs. You can be unaware of them. I have had silent ones show up on the monitor during a stress test and on a holter monitor. I also have ones that I can feel. To me PACs feel like a soft flutter in the left side of my chest (heart area) and PVCs feel like a giant boom! One day, many years ago I had intermittant PVCs for several hours and it was like an explosion in my chest each time. It was impossible not to feel those! I went to the emergency room and was told they were harmless PACs and they sent me home. I was not happy and went straight to my doctor who caught one on tape and said they were really PVCs with a funny variation that made them look like PACs to the emergency room doctors. He, too sent me home. The only one worried was me! Boom! Boom! Boom! Sometimes I can "feel" a silent one while taking my pulse--it feels like a missed beat. Actually PACs and PVCs are premature beats, but they feel like a skip when taking the pulse.

The bad feeling I get from standing or walking. If I could do unlimited time on my feet that would be such a blessing. I want to be able to shop!

For Vanessa about the church situation: Is there some job you can do for your church from home via computer and email? Such as keeping the church schedule of events current, sending out meeting reminders or schedule changes to members. Updating the church webpage? Coordinating a prayer group? Would your pastor be able to think of some way you can help the church and stay in contact with the members from home. As for friends: When I am doing especially poorly, I will call up a friend and ask them how they are and really tune into their problems and concerns because it takes my mind off of my own problems. Whenever I talk to anyone, I try to be first to ask how they are. I also try to remember what is going on in their life that I can bring up, such as, How is your neck pain? How did your son's game go last night? It is depressing to be so chronically ill and our illness is always right there in our faces, so it is hard to forget about it and be carefree for even a little while. It becomes very easy to feel sorry for ourselves. It becomes very hard to listen to the concerns of others with true sympathy when their problems seem so very trivial compared to what we are facing. I think we are better off when we do exactly that. It keeps us in the loop, it keeps people thinking about us, it puts us in the position of being a friend to others, as opposed to waiting for people to be friends to us. This attitude takes us out of ourselves, which is a place the chronically ill should visit more often.

Last night I talked to my cousin (vascular surgeon) and asked him to explain the "other stuff" in the report. He did and said that it really is a good report. He said that everyone over 50 has some artery disease and arteriolscolosis, but the fact that Jeff just passed a nuclear stress test means he is doing well in the heart disease dept. Also the little clot in an artery is not of concern. He was quite pleased to learn that Jeff's disease is stable. Just goes to show I shouldn't jump on the worry wagon until I understand what is making me nervous! There is a risk in changing the chemo, in that it is possible the new chemo won't keep the cancer stable as well as the old one, but if Jeff doesn't try it, he won't know if the new regimen might cause a remission. So ... off into unchartered waters we go, hoping for the best. Thank you all for your caring. It helps. To Emily, By Christmas, I had more than 40 stores selling puzzles. I am taking January off because stores are doing inventory. I am using the whole month to clean house--just about the right amount of time for a POTS person! Will go back to work in Feb.

Thank you, everyone who has been praying for my husband, Jeff to get well from cancer. His latest CT scan shows that his cancer has stayed relatively stable the last 3 months but may have spread a little. His liver tumors were the same except for one that may have grown. He also has a spot on each kidney that have grown--these may be cysts or cancer, however, cysts usually don't grow. The doctor says that this indicates that a remission is not possible with this particular chemo. Jeff has also developed neuropathy in hands and feet from the chemo, and possibly an allergy to it. So the dotor is changing Jeff to a new chemo. There is still a possibility of a remission with the new chemo, if it works. So it is not bad news, but I wish it were better news. We did not get a copy of the actual report from the scans that were done 3 months ago. I guess the kidney spots were there then, but the Dr. did not tell us! We do have the written report for this CT scan and there is lots of stuff on it that the doctor didn't tell us. For example they saw calcification of the coronry arteries--Jeff just had a nuclear stress test that was normal. The report also mentions bone growth in places, an adreanal gland beneign growth, and atherosclerotic calcification of the vessels and something called a mural thrombus, which was unchanged since last scan. YIPES! the things you learn. I will be calling my cousin (a vascular surgeon) tonight to explain these other things to me and what they might mean. Also Jeff has an appointment with the cardiologist as a follow-up to the stress test, so will show it to him, too. This is sort of a lesson to everyone. Always get a written report of any scans, because doctors don't tell everything that is there and even the radiologist doesn't explain all findings. Thank you so much for praying for him. It is comforting to me and to him to know so many people care what happens to him (and to me).