geneva

I only read the abstract but found the article interesting. Hope you can post the entire article when you are up to it. Here's the question....if the urine methlhistamine levels are too high or low, is there somehting they can do to correct the situation? Is this something that is a simple urine test or one of the things you would have tested in the 24 hour test? thanks Tearose for finding the article.

Morgan, sorry to hear about your PT visit. I started PT 3 different times in the past. The first time I left all decisions in their hands, since I was really clueless about what I should and shouldn't do. The 2nd time, I went in, gave them papers on POTS and said let's discuss what kind of plan you suggest before I ever got on the equipment. I made them talk me through it and we modified what I would do together. It was much better but after 4 or 5 weeks I had to stop because their facility was always warm...too warm for me. The 3rd time, the PT asked questions like what will happen if you do too much and I said I would pass out....they respond well to this!! So, I was monitored on bp/hr and we went VERY slowly. The first day I had a presyncope spell they were great because we had discussed what to do. btw, the really good PTs started me on 3 minutes on the bike...heavens, 15 minutes...that sounds like way too much especially given the way you have been feeling lately Morgan. Wouldn't some stretching exercises or leg lifts that can be done lying down be the best way for you to start? I hope you can have a productive talk with your PT but if not, ask for someone else to work with if you can. Odds are they have never worked with anyone like you before. I told them to treat me like they would a cardiac rehab patient and that seemed to translate into their language. good luck morgan!

Dawn, welcome to the forum and your soon to be best friends...at least when it comes to sharing what you are going through. I want to first congratulate you on continuing to work for 9 years with this condition. It must have required tremendous strength, especially being around so much noise and stimulation working in a school everyday. Now, after giving so much to so many for 29 years, your body is demanding a much needed rest. I worked for 24 years before being hit with POTS and continued to work for a year. It took me a long time to make the "adjustment" to not working and being forced to take an early retirement. It is the idea that it was not our decision, not within our control and this illness forced the retirement on us that is so hard to process and accept. I do understand that. After giving your body time to slow down and fully relax you may find yourself getting back to some degree of normalcy and can look forward to some of the activities that you always planned to do when you retired. I have learned that with hyperadrenergic that continually pushing ourselves to maintain the lifestyle we want, puts a tremendous strain on all parts of our system. WIth long term changes in lifestyle and attitude I have found much relief. I, also, after 3 years opted out of meds (beta blockers and Florinef). One of the things that helped me the most was yoga which I do with an instructor who modifies poses for me. The gentle stretching really helps. I agree about the routine. It doesn't matter how small the task seem, it is important to know what you have planned for the next day. I am home most of the time but I try to have a schedule of activities. And if all you do today is empty the dishwasher, log on the forum, feed the dog/cat and yourself, let it be OK. And be prepared for family and friends to say, "what did you do today?" Don't let it get to you that your activity list now is different from before....this is perhaps the hardest thing I have had to work through but it is important to judge your activities based on your capabilities at this time. I really think you will find that with time, and rest, and a new routine of smaller activities, Dawn, you will improve. Believe THAT!

Has anyone heard from Nicolemom's lately?. It seems a long time since there has been a post and I am wondering how Nicole is doing.

Mary, what wonderful thoughts you have shared. All of us can certainly benefit. I hope you and Marissa are also doing well. Purplefocus, it sounds like you are doing well managing all the emotions with sad events in the family. I hope your sons have gotten through this period stronger. I wish that Mindi will have great peace in her journey. all the best

Julia, sorry for all the hassle you have been through and will face in your appeal but stay focussed on the end goal (as I am sure you will!) good luck in your search for a good attorney.

Nina, just catching up on messages and WOW! that must have hurt terribly. So Sorry for your pain. Time to get out the walker with wheels and scoot around your place or the hard hat or maybe both!! I hope that you are feeling much better by now and not because the pain meds are masking what you are feeling (although that helps!!). Rest well and don't push too hard the remainder of the weekend.

Radha, I am sorry that you are having so much difficulties with food and that you have tried so many altenatives unsuccessfully. When things are at the worst, I go to a diet of organic baby food and high protein liquid drinks. I know these were suggested earlier and I was wondering if you have had any success with trying them? I can relate to the commercials on TV. I am always telling my husband how hungry I am whenever we see "real" food advertised. It is so frustrating to have a kitchen pantry and refrig full of food but only able to eat a handful of items. I so hope that you will find over time that you improve and can have periods of time where you can eat without becoming tachy.

Mary, you poor thing...what an awful cycle you are in right now. I know what those nasty sinus infection are like and I can't imagine taking 3 rounds of antibiotics since they make all my POTS symptoms MUCH worse. I really can't imagine taking the 2 drugs you were given at the same time. I send out my heartfelt support for you trying to kick this infection. It sounds like from what you said -- or maybe didn't say -- that your hubby wasn't in a particularly supportive mood last night (I am sure he is most of the time but perhaps it was too much for him last night). I think that most of us would rather eat worms than go to the ER where we will be treated like aliens (LOL) so if we say take me to the ER, it should be an indication how very sick we are. I know with your condition and your daughters, you have more trips to the ER than most but I am sorry you didn't have all the support you needed last night. And then to have to educate the doctor on top of that! btw, I no longer ever say I have POTS, just dysautonomia. Most have at least heard of the ANS! Thank goodness the IV meds worked for you. Is the doctor going to take you off the new meds or do you just continue and tough it out? good luck either way. Yes, Mary you DO need a vacation so get rid of the migraines and sinus infection and plan a getaway, even if you are only able to daydream about it! Hope you and Marissa BOTH have a better day today.

Amy, don't you just hate it when you think you have gotten used to Your symptoms and then out of the blue something else hits you? I have not had exactly what you are describing but in the early days I had tingling in my hands (and feet) all the time. Occasionally it will still happen and sometimes I find that it is a hydration thing, even though I think I am pretty well hydrated at the time. Also, while it doesn't happen often (maybe several times a year) I am unable to tell the difference in temperature when I get in the shower or run my hands under water. For this reason, I have a mark on the shower knob so that I don't turn it too far hot and burn myself....ouch! If you are unable to feel the water running on your hands this would seem to me something you should consult a doctor about. So, just becasue he doesn' t think it is Raynauds, can't he help figure out what it is. Have you had the nerve conduction test on your arms? hang in there!

Hi Bren, good to see you back! Sorry to hear you have not been feeling that well. I had my first bone density in my late 40's and I also have osteoporosis in some areas and osteopenia in others. I never thought about the question of could it be related to POTS before your post. I took florinef for 3 years and know that it is a contributing factor but I have a strong family history plus thin frame so just "assumed" that is the issue. The real problem for me is that I cannot take any of the meds due to issues resulting from POTS, particularly GI problems. I did try the nasal spray but had to go off it a month later. I have worked with my doctor and a nutritionist/pharmacist to try a wide variety of calcium supplements with no luck. When I take calcium supplements I get muscle and joint pain, an uncommon reaction for most. One of the supplements I tried also caused heart pain. It is very frustrating. I haven't been able to start an exercise program with weights due to tachycardia whenever I pick up anything, but am trying yoga and walking and hopefully can over time work up to weights. good luck to you and I will be very interested if anyone knows of a connection between POTS and osteoporosis.

Amy, before I went gluten free I couldn't figure out why I would get sick every time we ate out at Italian restaurants. Eggplant parmesan was my favorite too! Now, I usually just eat pasta at home using the Tinkyada brown rice pasta which I enjoy although a Greek restaurant nearby has grilled eggplant and will substitue rice for the pasta if I ask. I think you are smart to start with just a few menu items until your body settles in to the new diet and then you will learn what you can and cannot eat without the high gas response. I still find that when I am in GI flare that I have to go back to an extremely limited diet. You can do this! Hang in there.

When Emily is on her feet she is going to need to send her Mom to a day spa!! Poor thing, she is going through a lot herself but she is so thoughtful to take the time to send us an update. It is really good to hear that Em is making some improvement. You KNOW you are feeling better when you care enough to get your hair washed (LOL)....been there!! Hopefully before the week is out she will be in receipt of some of the cards and letters which will lift her spirits as well. Thanks Merrill!

Jessica, it is wonderful that you are feeling so well and have been able to do things that you previously just thought about. And a healthy little boy on the way...how exciting for you all! Enjoy this time and don't worry what tomorrow may bring. Are you staying in Tampa?

Ling, sorry you are feeling so poorly. Yes, I have had the head pressure. I know there are several types but mine is always like a brick INSIDE the base of my skull being forced out. It was frequent and worse at the onset. Now I get it rarely. I also think Florinef made it worse for me and I don't take that anymore. I have not had the electricity feeling in my spine but have had the feeling in my head. CT and MRI didn't show anything to explain why. good luck to you Ling.

What an accomplishment indeed! Congratulations.

I wish you peace and tranquility during this sad and stressful time. Remember the best thing you can do for your sons is to take care of their mother.

Lynna, while it is not a substitiute for meals, Ensure or Boost like products can help add calories and vitamins. Is your son willing to drink these? I would start with vanilla as some people have problems with chocolate. Everyone has different preferences on flavor so if he doesn't like one flavor, keep trying. At my worst, when I was losing too much weight my doctor told me to eat peanut butter and drink Ensure every day even if I couldn't get down much else. Also with time you and your son will find out foods that may trigger a worsening of symptoms. Usually sugar is one of those for many of us. The florinef, once he has been on it for awhile, will probably help restore some of the weight. I have never taken midodrine so I don't know if weight loss is a common side effect or not but I hope that he may start feeling a little better soon. It is hard in the beginning to regularly increase fluids to the level needed daily but it will become easier once your son can see that it will help him feel better. Even drinking salted water becomes a habit after you do it for so long. Hoping your son has better days ahead.

I am always so impressed by the wealth of knowledge available through members of the forum. Lynna, I hope that the information provided will help you find resources available here in TX. It must be terrible trying to balance the need to be with your son full time and trying to work but it sounds like you are doing a good job. Another thought I have is whether your doctor can order home care services? This wouldn't be full time of course but might allow someone to come in weekly. ALso, what about getting a church member, high school or college student who might come and be with him part of the time and hopefully without pay? Often just having another person in the house can give you and your son peace of mind. I hope that as time goes by he will find treatment that works for him. Good luck pursuing the SSI and medicaid route but from others experience it will take both patience and perserverance but hang in there.

Hi Tearose, yes, your absence is duly noted! I am so hopeful that you are working on the plans for the DINET spa or baking us all dozens of cookies, or even enjoying winter school break with your kids, but I fear you may have fallen into a POTShole and haven't been able to get out. Is this true? Take care and be back soon.

I can appreciate your anxiety for your son and whenever in doubt it is best to contact your son's doctor. From my own experience I know that when I feel really bad, food is the last thing I am interested in having. Perhaps your son feels this way? At the onset of POTS I also found that I could be starving, eating 2 bites of a sandwich, and feel completely full. This is due to the ANS. Does he also have GI issues? When the GI system causes a negative reaction to food, you really stop wanting to put food in your mouth. I guess what I am asking is does your son have any feelings (like suggested here) about why he is losing the weight? This would be helpful to share with your doctor. Since we also need to consume large quantities of fluids this can cause swings in our weight although I wouldn't expect 7 pounds in just a few days. I am not sure what meds he is on but it would be worth checking to see if they are a contributor. good luck to you and your son.

EM, I made your recipe for Rice Mold earlier today and it is very tasty!! I have recently switched from eating white rice to brown and am still trying to adjust so this recipe is a way to incorporate it with other foods I like. Thanks so much. I would really like to try your freezer black bean patties but would like to do it without the oats. I can substitute the flour but do you have any advice on what to use in place of the rolled oats? Amy, how are you doing on day 3? Hang in there!

Michelle, mailed mine today....thanks for forwarding!!

Metoo, I think our families see us sometimes looking pretty good and it is hard to know that even when we look ok, we are not. So probably what is happening is they are getting a real dose of "awareness and education" and maybe even feeling a bit guilty that they haven't been more sympathetic with your symptoms in the past. If so, remember that is THEIR issue to come to terms with but realizing that a very sick person can still look good is a contradiction many cannot realize. I hope that your doctor will be able to get useful information that will help you. I only had a 24 hour monitor and was so sick I hardly got out of bed so kudos for your to keep pushing forward.

Hi Morgan, how are you feeling today? Hope things are improving.