michiganjan

On of my favorite tricks is to take a dishtowel, place ice cubes along the middle of it lengthwise, then roll the cubes up in the towel, put a rubber band on each end and drape that across my neck. I don't suppose you could do this at work, but it is great when going outside. As you heat up the ice melts and wets your shirt and that cools you off. For me this works better than those cooling neck wraps, which I also have. I also have a cooling vest with large pockets on the inside that hold icy packs. This keeps down the core temperature of the body. I keep the pack in the fridge and the vest hanging by the back door. I can wear a thin T-shirt next to my body, then the cool vest and then even wear another shirt on top, if I go someplace I don't want my vest to be seen. You already know to keep a thermos of ice water/tea handy.

Morgan, Did you try to return them? The sandals I have can go back if only worn inside within 2 weeks. However if you explain that you have not even worn them? Interesting info: I called the US distributor. They told me that the maker of the shoes has turned down some NBA players who were willing to pay the big bucks to have the shoes made in their size. So I probably don't stand a chance. About the deck. The guy came and tried the cleaner double strength and it worked swell. So after he left I mixed up a double strength batch and guess what? Didn't work worth a darn. Now this a.m. I have coated the entire deck with double strenght and am letting it sit there for 20 min. Moral of this story is twofold: Ask and you shall recieve. Be careful what you ask for!

I just bought a pair of the sandals. I tried on the regular close-toe styles in the store and they are too wide to stay on my feet. I need a AA or even an AAAA in the heel to keep shoes on. The MBTs are very wide. No amount of thick socks will make them fit a foot so narrow as mine and they only come in one width. The sandals are very adjustable and so seem to fit, but when I walk in them in the house the straps make very red marks on my skin even under socks, so they probably have to go back to the store, which they can within 2 weeks if not worn outside. HOWEVER, I have experienced walking in these shoes and my opinion is that they are fabulous. They feel very stable and give me a springy step and yes, they do align my poor posture into a better stance. They are actually good looking, too, and a casual observer would not notice that they are really different in the soles. I would love to have a pair that actually fit me. I am going to try to get in touch with the manufacturor or inventor to see if they will make a pair for me. I know the possibility is slim (just like my feet!) but these shoes are truly revolutionary. An aside: Jeff bought some deck wash and finish (2-step process) and I tried following the instructions to clean our Trex deck which has black mold spots. This product is for removing mold spots. It did not work as directed so I got down on hands and knees and scrubbed with it. It worked a little but not like it should. So I noticed on the container that the manufacturer is in Detroit and I called the phone number and invited the rep to come on over to my house and clean my deck with his product -- that it doesn't work as instructed. He said he would call back. He called back 5 minutes later and said "How about Monday at 2?" My point being: It never hurts to ask! Therefore, I am going to persue getting a pair of these shoes to fit me! Morgan, I am so sorry that you cannot wear your shoes. I know you have tried everything possible to get walking. Don't give up hope. Things do change, and sometimes we can't even figure out why.

Late winter I started having pain in my left knee and then instead of getting better, the other knee started the same kind of pain. Finally I went to a physical medicine doctor who examined my knees, had them x-rayed, and told me I do not have arthritis, that the knee pain is caused by hypermobility and I have a collegen defect. (This was not news to me, but it was nice to go to a doctor who correctly identified my problem without my telling him first.) We now believe that I did not have the pain in the past because of my regular exercise program, but when Jeff was diagnosed with cancer last June, I stopped exercising because our whole routine fell apart and taking care of him and learning all the medical stuff I had to learn was about all I could manage. The physical medicine doctor said the only way to take the stress off the knees is to keep the muscles toned and he sent me for physical therapy. I have been there 8 times now and have been doing the homework and it is amazing how toned my legs have become in such a short time. I think it may be helping my POTS a little. And oh, yes, the knee pain is much better. So if you want to know the specific exercises, I will list them here. They are very simple and easy, except most are done standing so that may be a problem for some. Knee push: This one is done lying down on a bed. Lie on your back and press the backs of the knees into the bed. You want to tighten the muscles around the knees. Hold for a count of 10 and repeat for 4 minutes. Small squats: Place your back to a wall and feet a little in front of you and lower yourself into a squat, but not a deep squat. Hold the squat to a count of 10 and repeat 20 times. I do these against the fridge door because a painted wall will not let me slide down and up very well but the fridge door is slippery. Heel touch: Stand on a 2" high surface. A 2x4 is good for this. Stand on the 2x4 with one foot. Flex the heel of the free foot and then bend the knee of the leg on the board just enough to let the heel of the other foot touch the ground. Do 30 on each foot. hold on to the back of a chair for balance. Ride a stationary bike for 10 minutes. This one requires an exercise band. Tie the band to something very solid so it makes a circle. Place one leg into the circle and position the band mid calf. Stand so the band is stretched and has tension. Then do 3 sets of 20 small knee bends. Then do the other leg. Of course one should start by doing just the number of reps or the length of time that is comfortable. The efficiency of these exercises has amazed me and I have been a regular gym goer for years and have had many session with a private trainer in the gym. The results I have seen from these exercises are better than the results I got from working regularly on the leg machines.

I have POTS. I had a sleep study done several years ago. The result was that I do not sleep efficently. I really don't know what that means. The reason I had the study done was becuase during the time I am falling asleep, I will often jerk and shout. It is like a startle accompained by a Yell. It sounds like HUH! Sometimes it is more of a soft scream--AHHH! When this happens I sometimes feel like I have been asleep a long time, but if I look at the clock it is always just a few minutes after I lay down so it seems to be specific to the falling asleep part. If anyone reading this has ever heard of this symptom, please let me know what you know. I remember at the time after the sleep study I was told I do not have apena, but the funny thing is that twice in the ensuing years, I have gotten a questionnaire to fill out about my apena from the center that did the study.

I have had some emails from members of this forum asking how my husband, Jeff, is doing with his cancer, so decided to post an update now. Jeff just finished his 19th round of chemo. He has had stable disease for several months now, meaning he has 4 liver tumors and either a lymph node or part of the original tumor that still shows active cancer on his PET scan. The status of these cancers have not changed much in the last 6 months. After his very first round of 3 chemos, his cancer shrank considerably, but has been stable since then. This means the chemo is holding it but not gaining on it. So we appreciate all those who continue to pray for us. Now he has weekly chemo, every Friday. Right now he has a really bad rash on his face, neck, top of head, and chest and he has many little cuts on all his fingers. This is caused by the erbitux (one of his chemo drugs). In 2 more weeks he will have another CT scan to evaluate how the erbitux (his latest chemo addition) has worked. At that time, we will reevaluate whether he is a candidate to recieve an new treatment for liver tumors that involves placing plastic spheres that carry radiation into his liver tumors via a guided angiogram. If the current chemo has reduced the cancer that is not in the liver and only the liver tumors remain, we will likely do this 2 months after quitting the erbitux (which cannot be used at the same time the spheres are given). As I am writing this, he is out in the garage on a ladder painting the walls. He has moved everything in the garage in order to paint, and hung new pegboard, and is reorganizing everything. I am happy he has a project he can do and that he feels well enough to do it. He is even painting the garage 2 tone with chair rail where the two colors meet. My! we will certainly have a spiffy garage! I have been able to work in the yard quite a bit which I couldn't do the last few years because of my severe sun sensitivity. I do not know if it is because it has been so cool and overcast here or if the sensitivity is a little better. Keep your fingers crossed that I can still go out once Summer really gets here.

Mighty Mouse, He certainly has my sympathy and prayers! When they are considering treatment for his liver tumor, he might want to read about the Sir Spheres made by Sirtex. Just do a search on Sirtex and read about their spheres. They are a new treatment for tumors in the liver. I believe it may have actually been used once on a liver tumor that is melonoma.

I have allergies and POTS. I am also multiple chemical sensitive and have unusual reactions to even tiny doses of medicines. I have been going to a good allergist for more than 10 years now. She has worked with me to develop an allergy program that gives me good control. I use claritin, singulair, and asetlin nasal spray every day all year long. I add pulmicort all winter and spring (winter for breathing the cold air, and spring for pollen induced asthma). In the spring pollen season, I also add rhinocort nasal spray, benedryl, and mucinex. And yes, I take all of the above during the heavy pollen season, in addition to my beta blocker and other meds. However this was done very carefully by a doctor who checked on the interactions as we went along. I did not begin taking all those meds at once. The allergist has worked with me to try things, combine things, and add things to the mix gradually. All that time and experimentation has been worth it because now I have good control and I tolerate the meds I need to keep that control. Dr. Grubb once told me that people with POTS who also have allergies really need those allergies under control. Control is different than taking rescue meds once symptoms have started. I highly recommend working with a good allergist until you get control. Then learn what other meds you might need for breakthrough symptoms and furthermore, learn about when those breakthrough symptoms are likely to happen and preempt them with the extra control at those times. Remember that some allergy meds speed up the heart, some can cause arrythmias, some can dry up your saliva, and some really knock you out. A good allergist that LISTENS to you and gets a grasp on your problems and needs can combine that knowlecdge with her knowledge of the allergy meds available and choose wisely. i.e. I cannot use rescue inhalers for asthma . . . the propellant gives me asthma! So my goal (and my allergist's goal for me) is to have such good control that rescue meds are unnecessary. I also told my allergist not to choose any meds for me that speed up the heart or cause arrythmias. Some people with POTS who have experienced problems taking meds do not want to take anything for allergies until it becomes really necessary. This is NOT the way to go. If you have allergies, get an allergist and get a control program worked out and keep working on that control program until you get it right, then stay on it.

I live in Plymouth, Michigan. I have seen a couple of different electrophysiologists in this area and they do not have the expertise that Dr. Grubb has at the Medical University of Ohio in Toldeo, so I use him for my POTS doctor. His nurse practicioneer, Beverly, is very knowledgable also. It is not a very long trip to see Dr. Grubb. You can go down I-75 or 23. I can get there from Plymouth in an hour. It is worth the trip.

Michelle, I have had 2 endoscopies. The first one with only Versed. That one took me a long time to wake up and I was out of it for most of the day. The second one I had with no drugs. It is over with so quickly that I would have another done without the drugs anytime. First they sprayed my throat. Now this is a rather vile tasting experience. But it numbs the back of the throat so you won't feel the tube going down. Then they put a ring in my mouth to bite on. It holds the mouth open and gives your teeth something to do. Then they feed the tube through the ring and right down to the stomach. The only unpleasantness was I felt like gagging and so I just gagged right around the tube. Aside from the gagging it was fine. It was over quickly. I could breathe fine throughout the procedure. The gagging was the only discomfort. I also had a colonoscopy without drugs. Well let's just say I had 2/3 of one before I told them to quit. I do not recommend a colonoscopy without drugs. Later I had another colonscopy with Fentyl/Versed and it was fine . . . I would not hesitate to take that drug combo for a conoloscopy again. I think the trick is the person giving the meds. They should very carefully titrate the dose so not to take you too low. I think as far as themeds are concerned, it depends on which meds they give, and how carefully they titrate the dose. Michigan Jan

Hi Julie, I haven't written for awhile, but I do read your messages. I am so sorry that you are still having such a difficult time. I hope you get some answers soon. I sailed through my colonscopy a couple of months ago with fentynl and versed. I hope yours goes smoothly. That will be one less worry for you. Thinking of you . . .

Lois, I am so happy to read your news. You have had the strength to get through your cancer treatments while living with POTS. That is a monumental accomplishment. I rejoice with you and am thrilled that you have beaten the beast. Michigan Jan

Wow, Melissa, what a long, hard journey you are on. At least you are home and not in the hospital. And at least you are getting what you need to survive while your GI system rests. I wish you the best. I read every message about how you are doing. Michigan Jan

Often I will have a small amount of blood show on a urinalysis. This has been the case with me for many years. Several years ago I saw an urologist and had it checked out. They could find nothing wrong, but still the symptom persists and the doctor does not get excited about it. Just get it checked out and then you won't have to worry anymore.

Today we got the results of Jeff's latest CT scan. It showed stable disease. In other words, he has the same amount of cancer in the same places as the last scan. 1 enlarged lymph node, thickening in wall of esophogus, tumors in the liver and possible tumors in the kidneys. The new chemo combo has held the disease but not caused it to shrink. Today the doctor added another new chemo drug to the mix, so now he is taking a combo of 3. The new one will be given weekly and the old ones, every other week. Thank you everyone for praying for us. We sure can use the prayers, hugs, loving thoughts, and energy. This has been one very rough trip and it goes on.

Dear Sophia, Your search skills are amazing! I truly think I have now seen it all. In fact, I wish I had come up with that smart fart filter. I think there is money to be made there. Michigan Jan

Congratulaitons on the law degree. That is a major accomplishment for anyone and for a person with POTS it is just monumental. You worked so long and hard for the degree that your struggle was perhaps your motivating force for a long time. Now that you have the degree, your focus must change. The goal has been reached and you are at a new beginning. It could be that coming to the end and now being again at a beginning is part of what is throwing you. There are so many new decisions to be made. Whereas in the past years it was all about just getting the degree. Anyone who managed to get a law degree with POTS can also manage to figure out what to do with it and then do it! Michigan Jan

Nina, I got mine filled out by the allergist on the basis that in winter the cold air hurt my lungs before I could get inside a store unless I parked close. Also I am so heat and sun sensitive I can't walk across a parking lot without getting heat symptoms. The doctor has to sign that one of the qualifying stipulations is true. You can read what qualifies on the application. It pretty much came down to my not being able to walk more than so many feet. She picked that one. Mine is not temporary.

I have POTS and asthma and multiple allergies--food and hay fever type. I have worked with a good allergist for more than 10 years to get a program that works. I cannot use any of the "puffers" because the propellants give me asthma. Also manyof the drugs would make my heart race. I also take a beta blocker for POTS and taking beta blockers is not recommended for asthma patients. However in my case I need that beta blocker and with my current allergy control program I manage the beta blocker fine. The trick to living with allergies with POTS is to have those allergies under control ALL the time and not treat them only when you have symptoms. Here is the program that works for me: Claritin tab with breakfast--taken year round, every day Singulair before bed--taken year round, every day Pulmincort (one or two inhales morning and night) Taken almost year round. This helps my lungs reaction to breathing cold air in winter and helps forstall asthma symptoms in spring and fall. It helps keep down inflamation in the lungs and prevent asthma rather than treat symptoms. Astelin (once or twice a day) for the nasal hay fever type symptoms Nasacort (Once a day if the astelin alone does not provide complete relief of nasal symptoms) Zantac 75 once a day in evening to help block histimine in stomache Benedryl I carry this with me everywhere. If I get stung by a bee or eat the wrong thing, I immediately take one. Muncinex -- Time release guavasin. Any morning that I get up and my head feels stuffy, especially in winter when it is dry and mucas thickens that might block the sinuses. Atrovent -- I know this is one of those puffers. I have never used it, but my doc has me carry it around in my purse just in case. I have been carrying one around for at least 6 years. My daily control program is so good, it is very rare to have breakthrough symptoms and even if I did I would try benedryol before the atrovent. I am advised to use this only if I think I am going to die because I can't breathe. Keep in mind that I also have multiple chemical sensitivities. I feel fortunate to have such a helpful allergist who takes an interest in finding me the least problematical meds for me. It took 10 years with the help of my allergist for my current program to evolve to what it is today. It takes trial and error with any given individual to find what works best. The goal is always to have the allergies under such good control that "rescue" drugs are never necessary. Once you arrive at this goal, then stay with the program. The biggest mistake people make is to treat allergies as a seasonal problem or only treat allergies when there are symptoms.

Yikes! YOu have been through so much lately. I am thinking of you. YOu will get past it. Hugs from

Belinda, I have felt like I was breathing fire at times and in my case it is due to food allergies. If I eat anything that is at all spicy, especially anything with jalapeno pepper or garlic, I will feel like I am breathing fire for many days. By avoiding the trigger foods and also by staying on a good allergy program, I live pretty symptom free. My allergy program includes singulair at night, claritin in the morning, and zantac 75 at night. Yes that one is for acid reflux but it also helps histomine reaction in the GI tract. These meds hold me very well unless I eat a trigger food and then I also take a benedryl. You are on the right track to see Dr. Grubb. He can help with the dysautonomia symptoms. I still think if you are drinking abmormal amounts of fluids you should be checked for daibetes insipidus. An endoncrinologist knows how to do this. You will get feeling better as soon as the causes of your many symptoms are found and treated. Just keep going. Michigan Jan

What is normal for that kind of test? Are they supposed to go down when you walk around?

Dear futurehope, Concentrating hard for a long time can wear me out. One trick I learned is to change focus often. For example, while you are crocheting, make yourself stop every 15 minutes and look out the window or across the room, in other words, focus your eyes and your attention on something far away as opposed to the near and intense focus you have been fixed on. You could extend this to getting up and taking a turn around the room. I sometimes use a timer to remind me it is time for a focus break!

Lauren, only you can judge if you need to go to the emergency room. Erring on the side of caution is better than erring on the side of danger. My primary care doctor told me once, Jan, stay out of emergency rooms--they don't know what to do with you, however, the same doctor, when I called him at night and I was having whopper chest pains, told me to go to the ER right now! And I am glad I did. I found out it was not a heart attack. And they actually took good care of me and were compasionate. Some options for bad days can be to call the doctor and get his/her opinion of what you should do, have a friend sit with you, or to take a calming med and see if it helps. I sometimes think that all of us with POTS should have a band-aid med that can settle the palpitations when they get out of hand. I use xanax for this and I am really glad to have it for this purpose.

Blair Grubb MD is an electrophysiologist cardiologist at the Medical University of Ohio in Toledo. Many of his patients have POTS. He has had at least one book published, "The Fainting Phenomena" and many articles on dysautonomia. He spends a lot of office time with his patients and is knowledgable in using medications to help control some POTS symptoms. Many people with dysautonomia travel great distances to see him. Myself and some others on this forum are his patients. He is noted for his compassion. One day I was in his office and he had a patient who had come from Africa.