kayjay

Hi all, I was told to tilt the head or my bed 4-12 inches. At first i was just going to buy a wedge pillow but then read that defeats the purpose. What does this do? Has anyone tried it? everything else they told me to do has really helped so far but I don't want to damage my king size cannon ball bed by racking it . Any suggestions would be welcome please.

Grey, we are home now and we stayed at the marriott at first. We then moved to the Double Tree where we had a nicer cleaner room and stayed on the "fancy floor" that has "free" food and drink, for much less ($100) than we spent at the Marriott. I would ask for a renovated room if possible... ours was brand spanking new. In general Rochester is a pretty clean small city and I would have been willing to stay cheeper but we did not know the area. Double Tree will give you a 10% discount as a patient and the pool etc. were nicer then the marriott. My husband really feels like we got "ripped off". I will add that I think there may be 2 Marriotts and we stayed in the one connected by underground walkways- not really important unless the weather is freezing. You can get to the Gonda and Mayo buildings (where you will be most of the time) never going outside because there is skyway access from the Double Tree. Are you flying? We drove and we took drinks and snacks with us. We also ate at a place called "Chesters" at least 5 times and I already miss it. If you eat lunch there you can get "dinner" items for lunch prices. Anyway I am home now so PM me with your questions. and tell me what dr's you are seeing and what tests you are having. The sweat test is not as bad as I thought it would be but it is the worst one you may have. They also let me skip the tilt table test b/c my heart rate increased enough during a 10 min tilt up. I am so happy for you b/c I have hope and a plan now and I think that you might come home feeling the same way! I think the salty resturant food really helped me feel better and we opted to drive so that I could lay down and drink as much as I wanted. KayJay

Shoe, I just got home from the Mayo clinic and skimmed your post. It is really important that you do not Drink too much water. I do...the Neuro at mayo told me to try to keep the water to about 1/2 a gallon and Drink other things like V8, or pedialite g2, or nunn. He does not reccomend regular gatorade because of the carbs... not helpful to pots people.

Grey, This is one of my worst problems. I am learning that not bending over from the waist (squating instead) and eating small meals frequently helps. We went out to eat last night, I ate too much and was gagging by the time I walked out the door. I will vomit and when I have nausea it seems to come from my kidney area.... whick is strange I know. I am at Mayo and will have my final appointment today so I will again ask about this and what helps. I was told yesterday that for am nausea drinking 2 cans of v8 juice would help me. (my salt is not high enough) Also I drink too much plain water. The dr. said pedialite is a good idea and that regular gatoraid is too high in cabs. I also have found that when i eat more protein I do a little better. I have been sick during our marriage that i thought i had food allergies. It turns out htat it is related to my POTS and My activity level. Also the Dr's here really reccomend compression.... when you treat the "POTSY" symptoms properly the other things may go away. Best of luck. I won't be online again until sunday or monday... but I will let you know what I find out during my conclusion visit.

Rene, I just logged on to your post from the Mayo clinic and I am wondering where in PA you are. If you are near Philly, I would suggest my dr. DR. Maribel Hernandez who was able to get me out here to Mayo. She is a cardi dr. and she has really helped me. When I had a real "flare" this past spring, our local ER almost killed me (I think) any way. I finally got somewhere after I got to Lakenau hospital. It is over an hour from me but work the drive. When I need to go the the ER we drove there even though I felt like I was having a heart attack. If you can in any way get out to Mayo I cannot say enough about it. A team sees you (cadio, endo, and neuro)Best of luck to you

Jana, I am staying at the Marriot- across the street. I have never been there. Can you tell me if they told you that you would be there that long? My letter said that I would be there a min. of 5 days. Did you get a letter like that? My husband will be missing work and we have two elementary age children about to go back to school. If they want to keep me... I want to say b/c I am not in great shape and if is far away... but I thought maybe they will be done in 5? What do you think? Kari

Thanks Ram... you are a great source of info!!

Thank you all, You are such kind and lovely people!!!! POTS girl, I don't know who I am seeing yet (I know it's a team). I am having a 5 day work up. How long did you have to stay?

Erik, I also used to feel better drinking alcohol. I had mixed feelings about it and didn't think that is was right (my hubby doesn't drink and my one grandmother was an alcoholic) so I worried about it.... but it helped me function the next day. I would drink a beer (or 2) or wine when I got really desperate to "slow down" then I could function enough to make dinner. If I needed sleep I would drink a little more before bed and have some emergenC packets in water. I don't care for wine so often I would put a little wine in a huge glass of water. I was "sneaky" about if b/c I have children and I never want to set a bad example for them. I don't drink anything now b/c I am able to sleep with the Klonopin. Also I had to take my husband's grandmother for surgery one day. I didn't have a diagnosis and I thought I was having allergy problems. I took benedryl all day and felt pretty ok! It again slowed me down.... Anyway be undiagnosed for at least a decade I was compensating every day!!! This was a great topic so I had to write in twice! Kari

Rene, I don't know what to tell you other then follow your gut. I was misdiagnosed for 10 years and there are a lot of HORRIBLE DR's. I was also "fired" as a patient form one of my dr's. Are you near Philly at all? I finally got help at Lankenua Hospital seeing Dr. Maribel Hernandez (EP CARDIO) She is sending me to Mayo clinic next week. But she got me tested and stable so I was out of danger- using a BB and SSRI. She will help you and she cares. Is this too far for you? Taking nothing might be damage your heart but that crap about childhood trama is BUNK. I had a great childhood and wonderful parents. I have Dysautonomia. You may want to go to the drug store and get a decent blood pressure cuff. This way you can keep track of your numbers and keep yourself out of danger. BEST wishes and as a Christian Lady I would like to kick your Dr's in the face!!!!!! Take care if I can help you PM me. Kari

Your post is interesting to me in that it is the reverse of my situation. I even took special breathing courses and read books on breathing before I was diagnosed with POTS ( I am not a fainter but get very short of breath). Anyway the breathing thing did not help and later I was diagnosed with POTS. I thought reading your post is that you are better YEA!! but you got into some bad breathing habits when you were sick and that fed into you still having symptoms. I know that my body has "learned" to overreact to stress because of my adrenal involvement. I have to calm myself down when I am startled b/c it feels like an adrenal surge but it is not. Does that make sense? Anyway I'm glad that you are better and you have found things that help you. I wonder if you had POTS, got better, and then had to adjust your breathing patterns... just a thought. KayJay

Lina, Thanks for the great idea!!! I will do this in the winter!KayJay

We are leaving PA on Saturday to go the the Mayo clinic in Rochester. I have been sick for 11 years now but just got diagnosed in Philly in May after a long hospital stay because my heart rate and BP went up and stayed up. Anyway I have learned so much from all of you as I have been waiting for my trip to the POTS clinic. I wanted to say thank you. I won't have internet when I am being tested next week and I will miss learning from you... Any advice is welcome!! THANK YOU KayJay

Yes... I get horrible ear and sinus infections as does my son. When you are better try rinsing with neilmed sinus rinse. They have area easy to use (my dr. told me just warm tap water). I buy it at the drug store and have not had a sinus infection since started this. You should not use it during an active infection. I Love this stuff. It prevents the problem. Web site is www.neilmed.com. Good luck- My 9 year old uses it also and does not take allergy meds now. KayJay

YES... I took allergy meds depending on my symptoms. I always kept moving. My husband was just laughing about how I used to think I was allergic to Home Depot and Lowes (I was standing waiting for him!!!) I would get sooo sick. Now I take a stool. I also bought MBT rocker shoes (now I have 5 pairs). Also only my hubby knows this but I would chew nicotine gum (I am not a smoker!!) when I was teaching b/c i knew from a school project that nicotine helps people concentrate.... It helped with my brain fog! When I taught Kindergarten I spent so much time on my knees, instead of bending over. I "walk" around the classroom on my knees. We have a king size bed and I always wanted help making it... now I know why. I also hated to wash my face at night (bending over after climbing stairs)... so I usually didn't. I look back and feel really silly.. I thought that I had crazy allergies.

I think mine started with exposure to black mold during my first pregnacy. I developed allergies and had high blood pressure with the first pregnancy. I had PB problems after her birth then low blood pressure during the birth of my second child. I was really never sick before I was pregnant. I had chicken pox in 1st grade and mono in college ( made full recovery) but was healthy otherwise. My maternal grandmother died in her 40's and her children remember her being short of breath for no reason. I think she had the same problem.

Oh there is sorbital in nuun.... but the web site says it is a small amount... less then what would be in a small glass of apple juice. Maybe some people should check with their Dr.- thanx Bella

Bella- I am pretty sure that nuun does not have sorbital... but maybe Potsgirl knows. Jana- glad you liked it- I have not gotten mine yet but if you get on their website they have lots flavors and one has some caffine... that could be good or bad.

Hello- this happens to me and I think it helps me to eat less when I am "unsure" of how my body will react. I think some of it is the heat, some is the adrenal action, but it seems worse to me if I have eaten a lot. I now will basically eat only an small amount when I eat out. It also helps me to make sure that a drink a ton!! I will try to have at least 2 large glasses of water before I eat. The adrenal surges alone (without heat or food) also send me running to the bathroom. I hope this helps you. -kari

Erika, I had this very problem... to the extreme but now I can't sweat. I don't know how you feel about it but I was really only embarrassed by the sweat under my arms. (I felt like it was so visible and I worried about what to were). I always wore tops with out sleaves and a sweater or something over (always like a twin set. I also bought the really stong anti-persperant that you can get from the drug store. You put it on at night and it really does work after a few days... but it may be horrible for you, I am sorry that you are dealing with this... as a girl we are not supposed to "sweat" we "glisten" right? Anyway for me it really is the Dysautonomia and now I don't sweat at all. Maybe this will go away in the future.

I just collected my medical records to take to Mayo... and of course i read them. I found that the whole time I was in the hospitial my blood sugar was high (above normal but not crazy high) also my my Aldosterone is high and I am anemic. 2 liver tests (SGOT and SGPT were low) Any info about this would be great. Kari

alicia, Is there a nice church near by that you could ask for help. How about a senior center. I used to help people with transportation though our church. What if you called your local social services center and asked them if they could suggest something. Good luck to you- I will be praying for you.

I just wanted to tell everyone that I ordered nuun online. I am so sick of Gatorade that I have just been drinking salt water (gross I know). Anyway I wanted something low cal without artificial sweetners b/c they seem to make my headaches worse. Anyway nuun is portable and comes in lots of flavors. have any of you tried this of another product that you might suggest? I am so inactive that I don't want to drink my calories!!!

Hi- I am a special ed teacher (can't work now) and I tried to help in my children's school this year. It was really hard though and schools are very germy. I got sick a lot. Have you thought about hospice? I used to volunteer through them when I was in college and soon after. With your nursing background you might really like it. I used to visit families, read to patients, etc . Also Hospice would be really understanding of your limitations. I messed things up sometimes when a teacher was expecting me to work with students and I was a no show. Also making copies and helping with bulletin boards is not my idea of a good time. Just something to think about. I miss teaching so much I can't even tell you.... but if I can't teach I don't want to be in a school. Maybe that is how you would feel about nursing though. I just really loved hospice... they do great work and people are very receptive to a little extra love and time. Kari

Debbie, You are wise to consider that every dr. will "see" things in their own area. If your dysautonomia symptoms are new... that is a good sign that they are secondary (I have had my symptoms for 11 years). I think that you should consider seeing a good general internist. Also considering that you just were sick and you are living abroad, you might want to see an infectious disease specialist. (that's where I started when I got sick years ago when traveling- unrealated to POTS though). I was misdiagnosed for years because I went to a cardiologist and then endocronologist. A general internist finally diagnosed me properly because he was not looking for anything (prejudging). I know a great infectious disease specialist in Delaware... you might want to make sure that you don't have a parasite or something first. If you want his name and number PM me and maybe they can refer you to someone in AL.- God Bless you please ignore my spelling -karri