kayjay

Over all I am doing better now that I have been diagnosed for over a year and a half. I have hyper pots and still have horrible fatigue. I sleep about 10 hours a night but still need to nap during the day. Any tips?

Sarah- I do buy mine online- directly from nuun. It is pricey. I buy a lot at once. Might be more expensive than gatorade. I like the taste of nuun and like not having the sugar.

Sorry you are in such a bad state now. Do you have any allergy problems? Before I got rid of my feather comforter and the carpet in my bedroom i was sick all of the time. Allergies mess with your immune system in a bad way. Now I rarely get sick ( the normal sick ). I did have mono as well and it can really knock you down. Also I would ask about flu shots and the vaccine for phneumona ( sorry I cannot think to spell) UGGG! I get them now and I think it has really helped. Hope you are better soon. STAY HYDRATED!

Sky- this may not be what you are looking for but V8 works best for me. I drink small cans and water. I also carry nuun tablets with me. Gatorade just doesn't have enough of what I seem to need and it has a lot of junk in it. I drink V8 before I get out of bed. Mayo clinic suggested this and it has really helped. I do drink pedialyte when I get sick ( also suggested by Mayo). Makes a huge difference if you have any digestive issues. I have have days that I can hardly get out of the bathroom (TMI - I know) but pedialyte had kept so many other POTS symptoms at bay. Good luck to you!

I am another yes. I get it every year now. before I knew I had POTS when I got sick it would take me almost 2 months to recover. I am not big on vaccines but I now even make sure my children get it.

For me my hyper pots means that I do have high BP at times. My urine catecholamines are high enough to be mis-diagnosed with pheo. My plasma levels are also high... after standing. They are normal at rest. It is my understanding ( I think) that if you don't have hyper pots it can be a good thing when it comes to treatment. My high/low blood pressure makes things extra tricky. I didn't get the warm fuzzy when my report from the mayo clinic mentioned several times what a complicated case I am ? If your BP is not too high you can take meds I can't. Firewatcher mentioned symptoms. I had shortness of breath, frequent urination, and very high BP. Hope you are doing better soon!

I know we all know this but the best thing for me is my shower stool and a sprayer. Taking a shower sitting really saves my energy. I also have a makeup mirror with a stool in front of it. I can do make-up if I am not moving too much. I have more of an issue with washing my face at night and brushing my teeth. If I am too exhausted ( yes at 8 pm) I use a face wipe and listerine on my teeth ( no cavities yet ). I know it is gross but sometimes brushing my teeth is too much. I also have cream in my nightstand so I can slap it on from bed. In the winter I tend to use a very light self tanner on my face- helps me look a little healthy- clarins has the best ( "tanning milk" ) but it is pricey. recently I bought a smashbox face kit ... it really is nice. I also have stated using blush. I have a cream blush and just a little dab will do you.

I also have this but it goes away after I don't change positions for a while. For me it was worse if I walked upstairs to bed and brushed my teeth before laying down. It may be a result of what you are doing before you lay down. It is a horrible scary feeling when you are trying to sleep.... but it does pass.

I also tested negative for celiac ( blood test)... so I had independent testing done myself - Anyway i don't think about breakfast in terms of traditional breakfast foods. I often eat leftovers from dinner Checks has gluten free cereals. Vans make GF waffles. This morning I had eggs, bacon and cheddar cheese in a corn tortilla. Fruit and yogurt are good. I have had leftover rice. or hash browns with cheese Gluten free seems really hard at first but I have found pasta I love and I really try to think about what I can eat... not what I can't. I cannot tell you how much better I am off of it. My doctor told me "you know your body... if you feel better without it don't eat it". Tonight my family will be eating french bread that I bought for them at the bakery. I used to love it and now I just look at it and think about feeling sick. Pizza has been hard. The only GF pizza I have liked has been from a resturant. It I can help anyone with specific suggestions... pm me. I can tell you some of what to buy and what to avoid. I do recommend buying a book to get started. It helped me "find" hidden gluten. My IBS, Fibro pain, and vertigo have mostly disappeared. Betty croker even makes gluten free cake cookie and brownie mixes. good luck I hope this helps you... it might be worth a try.

I know that for me I was on and off again with gluten. I finally went completely off for 4 months. I don't think you can just "cut down" and feel better. Also I never got very sick right away. I became convinced that this was my problem after 3 months of GF when we went out to eat and long story short the waitress lied to me and I ate gluten. 2 days later I had many of my "old" problems back. pain, headache etc. I am taking pretty large doses of vitamins ( Gluten Free) and doing WAY better. I have had a few days of "health" and I no longer take naps ( this is after 12 years of illness ). I don't know how to answer your specific questions but I do know if you have a problem with gluten you can have the greatest diet in the world, take vitamins and still be deficient. Might be worth considering but you have to be really careful. Gluten is in all kinds of things... soy sauce, condiments, some lunch meat etc.

For me low ferritin ( 8), low vitamin d, and low B12 ended up being from problems with gluten. I still have POTs but am doing much better. Could you have trouble with gluten? My labs never made sense to me before because I eat well and take vitamins. Now I know I wasn't able to properly absorb what what my body needed.

Do you know if you have allergies? I had ear infections my whole life but haven't had any for the past few years. I learned that I have allergies... dust, mold, pollen, cats. I used neil med sinus rinse if I have been around anything I am allergic to. If you use it when you have fluid in your ears it will make things worse ( like a neti pot). If I get a cold a nasal spray helps keep it out of my ears. Sorry you have these. I know how horribly painful they can be.

Sometimes I sweat too much... other times not at all. Now I sweat a lot at night. I do know that my body temp is higher than normal. Before I knew I had dysautonomia I thought that I often ran a low grade temp. Certain dry should help but you may find you sweat more at night or in other places... like behind your knees. I wonder if your "normal" temp is also higher then 98.6. Mine is usually just under 100.

I have had this problems in cycles for the past 10 years. Before I was ever on Meds when I had a flare I would lose lots of hair. I personally think it is from stress hormone surges. It really is sad but I bet no one notices it as much as you do.

I hope you are feeling more encouraged. I think most us really do have emotional and mental lows. POTS has changed my life in many ways. I want to share some of what POTS has taught me. I really try to stay "in the moment". If I think too far ahead I feel overwhelmed and depressed. I am more thankful than ever for my family and people who I love. I have more attention to give them because I am not "busy" with work. I was really depressed about not being able to teach- I have learned that who I AM is not what I DO. I am learning that perfectionism is over-rated! I am learning to cut myself a break and not be so hard on myself... I am thankful to know that I have POTS. It took me almost a decade to get diagnosed. I am learning how to live with this illness. I have leaned to sit in the shower, stay hydrated and eat salt! Many people recover from POTS... and those people most likely don't spend much time on this site anymore. You may be one of them someday! I know that I am much better but progress is slow and sometimes hard to notice. As for anti-depressants. I was on lexapro but am doing better on cymbalta. If something isn't working for you consider making a change. The cymbalta has helped me with pain and depression. I'm praying for better days ahead for you !! And to Maggie- thanks for sharing those verses. I enjoy Psalms more since I have been sick!

This is so interesting to me because i am vit d deficient and I am in the sun a lot. I have children and a pool. I sometimes wear a hat but almost never wear sunblock. ( gives me zits ). How many of us have this problem? I also am iron deficient even though I take iron and take hormones to only get my period every few months. i just think this is weird. Any thoughts?

Lyrica helped my pain more than Cymbalta... but since I stopped gluten my pain has been much better. Are you sure you are not eating any gluten? As you know it can be tricky to avoid. We went out to dinner last week and long story short I ingested gluten from the sauce on my dish. The next day I felt like I had been hit by a truck. It really took me 3 of 4 days to feel better. Another thought is that many people take more cymbalta then you are taking. maybe a larger dose would help you. Can you take asprin. My doctor said it was ok to take a little asprin with the cymbalta. Could you have allergies? My husband and son have been really suffering with pain from their allergies. Are you getting enough electrolites? My doctors told me not to drink too much plain water. I do well with v8 and nuun. Hope you figure it out and feel better soon!

I have done ok with flying. Make sure that you stay hydrated. I got a bulk head seat so I could put my feet up. I also wore compression. If you get too hot in full compression... you can try knee high stockings and then something like spanks "higher power". It also has helped me to not fly alone. I have traveled with my husband or my parents. I just felt better not being alone and then you have someone else to deal with your luggage. I also wear "rocker bottom shoes". They are a bit ugly but they help me. I hope you make out well. I would call your airline ahead of time to make sure you can get bulk head seating. Having room to put your feet up helps. I wore my hr monitor and found it a little funny that during take- off my heart rate jumped from 60 something to 90 something. But really I felt no worse that usual. Also the bathrooms on airplanes are so gross but I know that I am going to have to use it. Drink V8 if you can stand it. I also take my "cane" seat with me. If I need to sit I don't have to sit on the floor. People also are less likely to hassle you if you pre-board because we look so healthy . Let us know how you make out!

I feel so SPECIAL!!! I can get in the 170's brushing my teeth. Glad to be a "high achiever"! haha

Sarah, I know I am feeling better. Now I can shop myself. 6 months ago my mom had to take me to the store ( before that I couldn't even go...and I never would have been able to read lables. A lot of just plain food is gluten free. Just no wheat, barley, hops and oats I think. I bought the book "Gluten free For Dummies" I think the author's name is Danna Korn. I have read about 10 other books, but this one was easy and a good reference. I really focus on what I like that I can eat... Then I don't feel overwhelmed. A lot of gluten free food tastes bad so if you are craving something specific like pasta... pm me and I will tell you what I like. I have tossed MANY things in the trash ( or fed them to my dogs). Many Amys products are gluten free. I started eating annies our glutino mac and cheese. Take your time. I was mostly G free for 6 months but the last 2.5 months I went whole hog. big improvement! I hope this helps you. I wish my POTS would go away... but at the same time I am so glad to have less pains, migraines, no IBS, and I take fewer naps. I also have almost zero vertigo. I know if you have celiac even a crumb can hurt you but by being careful I am able to know I have a gluten problem. Be careful with salad dressings and sauces. Also look online if you are in doubt. Good luck. Let me know if I can help you more. Also Mighty Mouse gave me wonderful help with food ideas. I would check with others so you don't waste $ on food that tastes horrible!

Dizzy, I agree with you that a connection must exist. I have been to ear specialist and no "ear problems". I assumed ( don't know anything ) that it has to do with fluid and/or blood vessel issues that we have. Sorta like the brain fog which is transient... I am stupid until I am still and sitting/laying down. Do you have vertigo prone? I do have a friend who has a vertigo issue and has to limit her salt intake. Do we have the opposite problem? If she has too much salt she gets bad vertigo and vomits. I think it is called muniers (sp). Could this be related to POTS? I am wondering if fluid is an issue here.

I was told that I drank too much plain water. My doc told me to drink V8 and the best thing he recommended pedalite ( don't know how to spell it) if i ever got sick. It has made a world of difference for me. I plan on keeping it in the house at all times. I do like nuun.

I do not have MCAD... but .5 clonopin has helped me sleep for the past year and a half. It is addictive though and I am cutting back now... again having trouble sleeping. Also would benedryl help you? That has helepd me sleep in the past. I do think that you are wise to pursue this because you can't get better without sleep! Good luck to you!

I know that I have mentioned this before but I wanted to let everyone who might have some of the same problems that I do ( IBS, Fibro, Reynalds, Hyper POTS, vertigo, migraines, CFS, etc) ... That not eating any gluten for several months has helped all of my symptoms. It takes a long time but I am sure now that I do better off of it. I have gone on and off of gluten for the past 7 months or so. For the last 2 1/2 months I have been completely gluten free. The results take a long time. Last night we went out to eat and our waitress assured me that my dish was gluten and wheat free. I asked if they used flour in the sauce she told me "no" and that she would double check with the kitchen. So anyway this morning I was so sick... I felt like I had been run over by a truck. I called and spoke to the manager and found that they use wheat flour in the dish I ate. I just wanted to share this because I have been sick for a long time... at least since my first child was born ( and she is 12). Gluten free is not as hard as I thought it would be... But I think it takes a few months before you feel better. I never had positive blood work for celiac and had to figure this out on my own. I hope this helps someone else. I did go though an independent lab ( it was pricey) They said I clearly had Celiac. If you want this info PM me. I don't want to advertise for them.

I was an early childhood teacher. I think I am almost well enough to work part time. I know all day would be too much. I just don't know any teaching positions that are not all day.