michiganjan

Jacquie, When I have had too much heat or sun exposure, then I have difficulty sleeping that night and have nausea and feel hot even though I do not have a fever. Were you in the sun while you were exercising? Sometimes it will take 2 or 3 days of staying inside and out of the sun and/or heat to get over this. Another symptom that goes along with it for me is a burning sensation of my skin, even in places that were under layers of clothing, and looks normal, not a bit sun burned or even directly exposed to the sun.

I have had the same poblem. I tried metamucil (3 doses a day was not adequate), stool softeners (don't work a smidge) laxatives (this was definitely not a good idea!) A colon doctor told me to eat high fiber cereal every morning. This works! Perfectly! The trick is that most people don't know what high fiber means. The daily requirement is 20 - 25 grams per day. Many cereals say high in fiber but they have only 8 or 10 grams of fiber per serving. The colon doc told me to eat a cereal that has a minimum of 15 to 20 grams of fiber. There are only a couple of cereals that do this and they taste like cardboard, but they do work. I use a cereal that I have been ordering from the internet because I can't find it in the stores. It is a little company that makes it and it is called SIMPLY FIBER made by Benefit nurtirion. It has 14 grams of fiber, no sugar, made from bran, whole grain wheat and whole grain corn. It tasted superior to the cardboardy ones from the grocery. And it has worked wonderfully well. I put strawberries and blueberries on it and add milk. This is my breakfast every morning. Here is a link to the Benefit Nutrition page: http://www.benefitnutrition.com/main/ I found one box of this cereal on a shelf at a big health food store and bought it because of the high fiber content. Then when it worked, I tried to buy more and the store I bought it in says they do not carry it and never have carried it and can't even order it. Yet the single box I bought scanned when I paid for it. Maybe it was a sample and they sold their sample. Anyway, I ordered 12 boxes from the website and had to wait about 4 weeks to get it, but it has been worth it.

Dear mom4cem, I have POTS and allergies. There are others on this list who have both, and we have had this discussion before. Dr. Grubb once told me that anyone with POTS who has allergies needs those allergies under good control year round. Preventative treatment of allergies is better than getting the symptoms and then taking a pill or using a rescue inhaler. If may take you a while, and you may need the help of an allergist, but it is possible to figure out your allergies and take preventative care to prevent having symptoms. I just went out and pruned a hedge. I am taking my summer base meds (claritin every a.m.; pulmacort 2 x day; nasacort 2 x day; rhinocort 2x day; singulair at night). Before pruning I took a benedryl on top of the base meds. This afternoon I will also take a mucinex as an add on. My base meds change as the seasons do, but I change the base meds a month before I know I will need them. My currrent program is the result of 10 years with the same allergist and trial and error over the seasons. I urge everyone with POTS and allergies to be constantly working on perfecting their own preventative program. And here's another reason to work with an allergist. They know the allergy meds better than any other kind of doctor. If you have POTS, you will not want to take allergy meds (and there are several) that cause tacycardia and arrythmias. An allergist knows which meds do this and which ones do not. Yet another reason for a yearly visit with an allergist is that new meds come out all the time and you can go and find out if there is anything new that may be better for your situation. Asthma is particualrly tricky with POTS, because if you have asthma, many of the treatments aim to dialate the vessels and many POTS patients need to constrict them So taking a beta blocker that is a vasoconstrictor may help POTS but will worsen asthma. And asthma meds may help the asthma but worsen POTS. This may be a fine line to walk, but it can be walked with the help of a top rate allergist.

I think if it were me, I would schedule both but try to see the hematologist as soon as possible. Bleeding from the bowel is only one cause of losing blood. Did you have any blood stool tests? Good luck and of course keep us posted.

Your stick-to-it-ness is admirable. Just reading your message makes me want to work harder to lose the extra pounds I' ve gained since my husband got sick and I stopped exercising regularly. Good for you!

Amazingly enough, the last 2 months, I have had hardly any POTS symptoms. And tonight I shopped in a mall and tried on clothes for almost an hour! I have also recently had one 30 minute symptomless walk and did a short stint in the grocery store. I think my POTS is improved because of my MBT shoes and also the physical therapy exercises I have been doing. About 3 months ago, I had knee pain so bad that it hurt to walk. I went to a physical medicine doctor who said my joints are loose (my hypermobility EDS thing) and the knee pain was because the knee and leg bones did not line up correctly. He sent me to physical therapy. The therapist gave me a program of exercises to do specifically to build all the leg muscles, but in particular those that can give stability to the knees. I have been doing these regularly for about 3 months now and the knee pains are gone. I plan to continue this set of exercises 3 times a week forever. The physical therapist also told me to get very stable shoes (I was wearing Reeboks and he said they were not stable enough for me.) I went to 2 different orthopedic shoe stores and tried on dozens of shoes but none really fit me because I need a 4A heel, a B in the front and a square toe box. Where on earth am I going to find that? I became intrigued with the MBT (Massai Barefoot Technology) shoes and found I could fit a pair of the sandals because they were very adjustable. I have worn those sandals every day since and I love them. When I stand up in them, I stand up straight. All my life I have been slumped with shoulders rounded forward and I think my hunching was partly due to wanting to keep my head down to help stave off lightheadedness. Now I stand straight without wanting to drop my head. When wearing my MBT sandals I am more energized. They are somewhat springy. The footbed is absolutely flat--no arch support--and the soles are convex under the arch. The rounded bottoms have a "sweet spot" that you balance on when standing still. The sweet spot is located behind the arch and in front of the heel. When standing on the sweet spot neither heels nor toes are in contact with the ground and I have to balance to stay there and this makes my leg muscles constantly fire and thus increase circulation. Just walking and even standing still helps build leg muscles. The shoes are strange to stand up on the first time. They rock front to back. The physical therapist told me to buy the most stable shoes I could find. Instead I bought the most unstable shoes possible! When I showed them to him, he examined them and then said they were a great idea. He wanted a pair for himself. Now here's the downside: They are very expensive and not many stores carry them. My sandals cost $240.00. I am hoping my funny feet will fit the new MBT styles coming out this month which are supposed to run a bit narrower, so that I can have at least one closed pair. Also, 2 POTS friends visited me last month, and both tried on my shoes. One felt unbalanced and dizzy on the shoes. One thought they were interesting. If you want to learn more about the MBT shoes here is the web address for MBT UK page. http://www.mbt-uk.com/ Folloiwing are brief descriptions of my physical therapy exercises. I asked the physical therapist to design a mostly lying down program for me, so as to be doable with POTS. #1 Lying down on my back, legs straight. Press the backs of the knees to the floor--this should tighten the muscles along the sides of the knees. Hold for 10 seconds, release. Repeat for 4 minutes. #2 Lying on my back, bolster placed under knees. Raise both legs from the feet to the knees off the floor and hold 10 seconds. Repeat for 4 minutes. #3 Lying on my back. Bend one knee, other leg straight on the floor. Raise the straight leg to the level of the bend in the knee and take it back to the floor. Do 3 sets of 20 raises on each leg. #4. Sitting on a hard chair with feet on floor, bent at knees. Lift legs out straight and hold for 10 seconds. Repeat for 4 minutes. #5. I stand with my back against the fridge door because it is smooth. I do a shallow squat and hold for 15 seconds. Repeat 20 times. #6. I stand with one foot on a 4 inch block of wood, the other foot hanging free with flexed heel. I bend the leg that is supported by the block enough to allow the heel of the free foot to touch the ground, then straighten back up. Repeat each leg 30 times. These take time to do and they are not easy. They really give my leg muscles a workout! I have no idea if the above will help anyone else with POTS, but I think they have helped me quite a bit, especially with my hypermobile knees.

You have my support as well. The hardest thing for me with my husband with cancer is watching him feel so sick, so I can just about imagine how you must have felt when your mother lost so much blood. I am glad the surgery is over. Now hold onto hope.

Certainly can't hurt. Might help. You have mine.

Today is my 59th birthday. This morning Jeff gave me 2 wrapped presents. My first thought was that I wanted desperately to save one unwrapped for next year. After I opened the first one, Jeff made me open the second one. It was a small bag I had wanted for my bike but scads of those large size, individually wrapped life savers fell out of the box. I thought he had given me candy. Then he told me I am his lifesaver. I think today will be a cry day. I know this is a DINet forum. And feel I belong here because I have POTS, but I really don't give my POTS much thought any more.

We just got home from the hospital where Jeff had his sphere treatment to part of his liver. It went okay, but the doctor told us the last CT scan shows that Jeff has 5 new spots in the liver--small ones, but some are on the right side. The sphere treatment today was just to the left side. Jeff also has a tumor in the caudate (part of the liver) that the treatment today may or may not have been able to reach. Now Jeff will continue chemo and in 4 weeks we will have another CT scan to see the results of the cryo and the spheres procedure. Jeff played golf yesterday. He was in pain from his right knee. It started the day before and wasn't too bad so he went ahead and played golf and that made it much worse. I am worried that it is a metastisis to the bone, but the radiologist today said probably not cancer related. So now I have to talk to the oncologist and ask him to get pictures of the knee and figure out what to do about that, and what to do about the chemo that is scheduled for Friday, and give him the CT report. I think this means that chemo will no longer hold this cancer. I am very sad tonight.

I am happy to hear your news, Nina! I hope he heals quickly and the lab reports are good.

You might make a chart of blood pressures and heart rate readings with dates and readings. This way the new docs could see at a glance the range and they would not see the notes re psych. Also any records that do not mention the psych stuff would be good to send. If you have test results or procedure reports, these should not make mention of your mental state. These might include EKG results, blood test results, stress tests, any kind of reports that just state the facts. I would definitely pick and choose and I certainly would not request the current doc to send records.

Willows, thank you for sharing your story. It gave me a wake-up call. Now that the weather is warmer, many strangers walk our streets with flyers, etc. Your message has changed my and hubby's behavior. I won't even go out to pull weeds now without locking the door and taking a key along. I also take more care to shut the overhead garage door and always lock the car doors if they are parked outside in the drive. A few nights ago, I saw a cop driving very slowly down our street. I stopped him to ask what he was doing. He told me that 2 young men had gone through the neighborhood the night before. One was driving and one was riding on the hood of the car. The diver would pull up in a driveway, the boy would jump off the hood, try car doors and if one was unlocked take everything loose, hand it in the window, jump back on the hood, and on to the next driveway. As they progressed through the neighborhood, the driver threw anything they did not want out the window. The cop was cruising, looking for discarded things, collecting them, and returning them to the owners. So people are out there, looking for opportunities all the time. We are being more careful. I am happy that your hubs has a new camera. How nice to get that envelop under the door!

Jeff spent the night in the hospital but is home today. Yesterday he had cryotherapy to destroy one of his cancer tumors. The CT scan he had this morning suggests that the cryo got all of the tumor and none of the surrounding organs. So now the score is: 1 down and 4 to go. The 4 being his 4 liver tumors that he will be having the Sir Spheres for come Wednesday. I'll let you know.

Nina, If you will email me your snail mail address, I will snail mail you a roll of TP or two. Just hold everything until it gets there. You can do that, right? Just take care of yourself. I missed Jeff last night as he had to stay in the hospital. He is home today on the couch, feeling bad from the procedure he had yesterday. Even though he needs to stay on the couch, he is HERE, and I am not lonely. The mere physical presence of a loved one can be very comforting.

We all need a rant now and then. I think it helps us get back up and going. I am cheering you on. I admire what you have been able to accomplish.

Sending positive energy and thoughts your way.

It is approaching 1 year from Jeff's cancer diagnosis. He has lived this last year on chemo, which has held his disease to 5 visible tumors--4 in his liver and one near the stomach. His quality of life continues to be very good and he tolerates weekly chemo well. This morning (Memorial Day) he served food from the Salvation Army Canteen Truck at a memorial march for firefighters. Jeff's latest CT scan showed that one tumor has grown and that his disease may be progressing. He has a new treatment plan. In addition to continuing chemo, on June 1, his largest tumor (outside the stomach) will be frozen by cryotherapy. The doctor doing the procedure will be guided by a CT scan to freeze the tumor. This procedure will be done at the cancer center where he gets his chemo. Because cryotherapy cannot reach all the liver tumors, on June 7, a doctor at a different hospital will administer by catheter through an artery, tiny spheres that carry radiation to his liver. These lodge in the tumor and emit radiation locally for 2 weeks. The physical presence of the spheres also inhibit the blood supply to the tumors. Whereas cryotherapy can actually kill a cancer tumor, the spheres can only slow them down and delay the disease. This procedure has the risks of carrying the spheres to the stomach and/or lung, where the radiation can cause serious damage. The doctor doing this procedure is very skilled and experienced and so we depend on him to deliver the dose exactly where it needs to be and nowhere else. Thank you, again for all your prayers. As we go on, we are aware that we are being held up by you all.

I have a coolsport vest, also. I like mine a lot. I leave it in the fridge, packs loaded and ready to go. Muy favorite trick in addition to the vest is to roll ice cubes in a dishtowel, then put a rubber band on each end of the roll and sling it around my neck on top of my clothes. As I am outside, in addition to the cool pack to the neck, the ice melts and the water from the towel gradually soaks down my shirt and this cools through evaporation. I also like to carry a bottle of cold water and I can add it to the towel if needed, or drink it, usually some of both. I am inside today due to too much heat/sun yesterday. All I did was shop in a greenhouse for 15 minutes. It was too much, but I did manage to plant a lot of flowers in the yard by going out very early or late in the day.

Nina, I am so relieved for you and your family! Hugs, Michigan Jan

How awful to have him so sick and how awful for you to have to watch him be so sick. Hugs from

This is the first time I looked at Faces of DINET. What a good-looking bunch we are! And it was such fun to see everyone and link faces to names. If we have to be sick, at least we are beautiful! I almost cried looking at Persephone at her graduation.

Julie, Track down the records of what you had for the February 01 endoscopy. Get a printed copy. Usually a hospital or Dr. office can fax you a request for permission form, you fill it out, fax it back and that releases them to either fax or mail the information directly to you. Or mail in a request letter (you have plenty of time). This record should be in two places: The hospital or clinic where the test was performed and also the office of the doctor that performed the procedure. Look in both places until you come up with a copy that tells you what drugs and how much of each drug you had. Also track down the drug that they gave you for nausea that made you hallucinate. This one you really need to know for the future. And get the dosage. What caused the nausea? I had my colonscopy recently with fentynl/versed and it went perfect. I was worried about the drugs so had a talk with the neighbor across the street who is an anethesiologist. After she got done explaining the drugs, I was fine to have them. The trick for me was to make sure the doctor doing the test knew I am chemically sensitive and that small doses of drugs can have very powerful, unwanted effects on me. Tell them you want the smallest possible dose and to keep you arousable throughout. As I understand it, fentnyl and versed can be titrated very precisely, and when the drugs are withdrawn, you awake very quickly. As for the rash on your knees. . . . did you perhaps kneel in something lately? Scrubbing a floor, cleaning something, pulling weeds? If you have a rash that is very persistant, it is possible to biopsy a rash. I had a recurrent rash on my face/neck and finally went to the dermatoligist who took one look and biopsied it, as it looked to her like a rash associated with a kind of lymphona. It was not. It turned out to be a rash associated with dry skin and not even an allergic reaction. That was really good to know because then we knew that to treat it successfully, I had to keep it super moisturized and this did work and continues to keep it away. If we hadn't learned this, I would have kept on treating it as an allergy and gotten nowhere. It is good that your thyroid is stable. Did you ask the endocrinologist why the anti-tpo is so high? If you didn't get an answer, call and ask him, and also ask what else should be done. Just keep moving forward, always pushing for answers. Hugs,

Nina, I am so sorry that the cancer has spread. I don't know enough about melanoma to know if chemo can work against it, but his doctors will know that. I am praying for you and him. I know all about the can't stop crying. On Tuesday, Jeff left for brunch about 9 a.m. in another city with his group of retirees. As soon as he left I started crying. I was still sitting in the same chair crying when he came home at 2 p.m. He tried to comfort me and that moved the crying up a notch (worse, not better). I stopped long enogh to eat something, then just went back to crying. I cried until about 7 p.m. Then finally stopped, ate something, and watched TV, and then I had yet another bout before I finally went to bed. The next day, we were driving in the car and went past the music store where I take guitar lessons. When I saw the store, I realized that I forgot all about my lesson the previous afternoon. I have to tell you, though, all that crying did help somehow. I have done this before and I will probably do it many more times before Jeff gets through with the cancer. It will be all right, Nina, no matter what the outcome.

I think I have posted my "low" and "slow" message a dozen times. I agree with Em. Starting at a ridiculously low dose and working up very slowly works for me to get me up to therapeudic dose with fewer side effects. I believe in giving my body plenty of time to recognize that there is something new and adjust to it. I have a pill splitter. When I started lexapro, I started with 1/8 of a pill for a month! Believe it or not, that turned out to be very close to the therapeutic dose! Another advantage of going low and slow is that you can discover the lowest therapeutic dose and avoid having to take more of a med than is absolutely necessary to get the job done.