Jenn202

Hi Steph and Corina! Corina - about how long were you on the mestinon before you got over the side effects? Steph - Yes I have the botle sitting here as well, but am scared to take it! I just spoke to my POTS Dr here and he says its fine to take but has not recieved Dr Grubb's report yet. He also thinkis I should go to Mayo for a confirmation.... Now I am wondering if I should? I know Dr Grubb works off of mayos research.... But then again maybe another opinion would not hurt?? Any thoughts?? Thanks Guys! Oh BTW - Steph if you start the mestinon beofre me let me know how it is going....!

Thank you so much everyone..... I am nervous about starting mestinon..... I hope if I do get side effects they wont be bad ones... But I am at least hopeful after Grubb that I have choices..... Also its so comforting to truly understand what is happening to you when you feel a certain way... I think a lot of the anxiety with being ill is not knowing what is going on.... He really helped me paint a picture of it..... Have a good Night

Hi Ernie - I can understand your dilema.. I think that once you get some info together going again to Dr Grubb would be a good idea.... I am sure you know that after my recent post I think he has a great mind and might be able to offer you a perspective that was not seen by other Dr's..... I am sorry your recent hospitalization did not go well.. I have been in that boat...Its so frustrating..... ! I hope you can get your tests done in July and see Grubb at some point afterwards. Feel Better

Thank you Ernie and Earthmother! Corina - Dr Grubb wanted to start me on 1/2 60 mg tablet 2 times a day and work up to 1 whole 2 times a day... But I have severe med sensitivity. I just read about mestinon and side effects and am a little worried about trying it.... But I guess I have to so I can see whether it will work or not before I move on to the next trial drug.. Thank You for sharing your experience and I am SO HAPPY you are able to function better on it!!

Hi I just wanted to give you the no sugar update... Even with traveling I was able to make it without sugar... I did have a 1/2 of a bannana every day.... But I did it! I definetly feel better eating well again, and I am just now not feeling the need to eat junk b/c my body feels cleaner.... Hope everyone is hanging in there!

Hi everyone - I just wanted to THANK ANYONE who insisted I keep my Grubb appt.....it was hands down the best appt I ever had with a Dr!! He was absolutely wonderful..... He basically solved every problem I was having and explained in detail why it was happening ( computer diagrams and all)..... He diagnosed me with hypermobility as well. My arms actually come out of joint they can bend back so far... I just thought I was flexable! Anyway, He said b/c my POTS is caused by the Lyme he thinks I have a very good chance of recovering or improving significantly... 80/20 percent... His goal is to stabilize me so that I can continue on a high enough dosage of meds for my Lyme disease..... He said that most of his patients with Lyme do very well once they tolerate treatment for it..... He is trying me on Mestinon...... He said I need to just do a trial and error of the list of meds he has... But he has high hopes that I will tolerate this drug ok...we'll see.... Anyway, my husband and I are both so happy to have answers, and to at least understand what is happening to my body. Better news is that there is no need to go to Mayo.... He said that I have all the testing required ...it would be up to me if I wanted more for myself or insurance, but he said dr Low would have disgnosedme the same and have me on the same medication...... I just thought I would let everyone know and again thank everyone who provided me with info to dr Grubb!

I've learned to stay properly hydrated I have to add electromix to every glass of water I drink along with a salt tab.... It does the trick!

Hi Lisa - Its hard to say..... 8 years ago when I first went on the candida diet I didnt think I had any problem with sugar either...Then I went on the diet ( or should I say lifestyle change)....and had AMJOR withdrawls for a week followed by more energy, clearer head, and overall "lightness" to my body.... Ever sonce then when I put sugar back into me ( and I have many times in the last 8 years! LOL).... I react quite a bit..... So that might or moght not be the case for you. One way you can tell if you possibly have a problem is to check your tongue. A white coating on it suggests yeast overgrowth in the body...... or if you are having yeast infections.... There is also a spit test..its gross, but when you wake up in the morning, your supposed to spit in a glass of water...if your saliva sinks to the bottom then you most likely have a candida problem..... ALthough there are many people who eat sugar and do fine.... You might be one of them.. if so have some chocolate for me !! LOL Take Care

Hi Guys - Well Monday morning I leave for Ohio to see Dr Grubb. I hope I get some good info. I'm armed with compression hose, salt, and electrolites! I just wanted to thank everyone of this forum and on NDRF....if not for these sites I would not have half the information on Dyautonomia, and would not even know Dr Grubb exsisted..... Thank You to everyone who has given advise, and helped me make decisions.... Your help here is invaluable!!!

Hi Amy - I have the same reaction to sugar... You can definetly get a major reaction after you have stopped it for a week..... I always remember how I feel when I eat it and it reminds me I dont want to feel like that or be masking any of my POTS/Lyme symptoms..... I am still sugar free..... Hang in there!! You too Gena!

Keep up the good work Amy!! I add lots of good fats like extra Virgin olive oil to my diet, and I LOVE avocado! I did really well yesterday.... Once again no sugar! Its hard when I have those snack craving times to not reach for something sugary.. But I am doing it.

I went into complete remission over the fall after I started Lyme Treatment again... I was 100% symptom free.... A bad virus in December retriggered my symptoms... So yes I believe its possible to gointo remission or possibly to completely recover... I also think it depends on how you got your Dyautonomia to begin with.

Its day 3 for me also... SO far same as Gena... NO SUGAR

Hi James - I am very glad to hear your first day went so well! Keep up the good work, and make sure to not overdo..give yourself some downtime... Best of Luck!

Ernie - Thats wonderful news! I dont think its odd to be happy about the hospital....It is the thing that might give you some answers.. Good Luck and I'll be thinking of you !

Hi Lisa - I agree with Steph. I honestly do not think your Dr was trying to upset you. Having a chronic illness is immensly taxing on us and the people in our lives..even if we think we have things under control sometimes we are burying frustrations deep down...thats what is so great about counseling.... Its a safe place to vent, or just talk..... I have seen many counselors on and off for years now. My husband and I go to see one together as well. Not b/c we are not happy with our marriage or depressed, but b/c we know that we have quity a bit of things going on and an outside ear is always so helpful If you decide to go see a counselor..take your time...see several.....pick the one you feel will fit you, dont feel you have to stick with the first one you see. A good counselor will tell you that anyway,.... Thats what I did, and I ended up with a great one. Also just b/c you are seeing a counselor does not make you clinically depressed or crazy... I think 80% of the world is in counseling nowadays! LOL Depression does not have to be clinical...it can be a normal part of dealing with illness. I hope you feel better, and can get your meds regulated Take Care

Hi Gena - I subscribe to Body and soul too!! Love the magazine...yes I saw that article as well! I used some if it along with a CD I bought...It really makes me feel better afterwards.

Thank you for all your input! My Dr's are pretty unconcerned about it being dangerous... I guess its a POTS related thing.... I have nothing else wrong..have been through all the testing for everything else in the entire world... I just take TONS of slat when It acts up and lower my fluid intake a bit.... Miriam - I never thought about it that way..... But it makes so much sense! Katherine - I am so happy you have been able to getall these thig sunder control...right now I am not on meds...waiting for my Grubb and Mayo testing.... I am hoping I will find a good combo that works.... Ernie - Its hard to say if your symptoms are from low sodium.... But it seems high likely it could be since It looks like we all tend to lean towards electrolite imbalance. hi Bria - I think you might have misread my post..I have low sodium and have to increase my salt intake to a crazy level.... if I dont do this than hyponatremia can occure...... Its like I am always trying to balance fluid every day... So frustrating! Thank you guys as always... I appreciate your weekly support b/c I know you are all dealing with your own problems...it means so much

Hi amy - Still hanging in there...Had a half of a bannana with breakfast, but thats it...no sugar..... Keep up the good work!!

I was wondering how many of you have been diagnosed with Hyponatremia.... I know many of you have low sodium, like myself, But As my sodium drops I end up retaining water in my tissue..... Its a dangerous problem from what I have read, although my Dr's do not seem so overly concerned about it.... When my sodium drops I also get very weak, palps, dizzy, muscle fatigu and muscle cramps... Any of this sound familiar at all? I am like this today after getting over a virus I had last week..... Anyone with a similar experience I would really appreciate input and if you had further testing. From what I have read it is very complex and there are many forms of hyponatremia. Thanks again for your support!!

Miriam - I am so sorry for your loss and all you are going through...You are in my thoughts and prayers that eveything will work out for the best. Take Care of yourself.

I've been strength training for 8 years, and am so happy I have kept up with it. I have a Total Gym I work out on it about 3 times a week... I have a rebounder that I use every other day.... I also do daily Push ups and abdominal work... I just recently added Qui Gong to my excersie routine and I love it! 10 minutes a day and I feel so much more relaxed. Keep up with whatever feels best for you, and do it in moderation.... I think the key is to not push so far that you end up overdoing and in bed afterwards..... I usually stop when I still have energy and feel good..... Good Luck

Just wanted to check in : Tearose Keep up the Cheerleading!!! I have been pretty good this weekend.... I only had one sugar free cookiw with Maltitol in it...other than that no sugar... just protien, whole grains, and 1 fruit..... I am still craving the "unantural sugars" This week will be a challenge

This is a great post.... It at least gives me confirmation that I am not crazy and the only one that has experienced such craziness by Dr's.... I have so many issues with my Dysautonomia...I cannot regulate sodium, potassium, and fluids correctly... I go into a horrific state without IV fluids if it gets bad enough and believe me it has gotten VERY bad at times throughout this ordeal... I have been told the same: drink water with a big salt tab....well if that worked I WOULDNT BE SITTING HERE IN THE HOSPITAL HALF BREATHING NOW WOULD I! I wonder if we will ever see the help we need in our lifetime. I actually have 2 diseases with the same stigma...along with POTS I have Lyme Disease...the Dr's love to see me comming!! LOL Anyway... sorry if I vented too much... But this really hit home tonight.

Amy - I;m with you! I promise no sugar..... The only sugar I will eat is 1/2 a bannana b/c It helps me with potassium and general well being.... I have been bad with the sugar substitutes so I will be stopping those too I know what its like.. My husbands idea of a good meal is tons of Friendlys ice cream with ready whip, oreos, chip Ahoy, Reeses Peanut Butter cups, and kit kats! It sso hard to have them around. Tea rose.... I know its a trek wo my place but maybe you can raid my cabinets too make sure I am sugar free! LOL