Jenn202

I'm so sorry its been so rough lately for you Dont ever feel like you are "complaining" for no reason...... We al have those feelings on and off. Have you checked into online schools? There are many good ones out there...many require only minimal time on campus. Take good care of yourself and concentrate on getting yourself feeling back to baseline..... Take Care

That wonderful Nina! You are a very strong dedicated person.... you will get through all this

Nina - I missed wheer you wrote that you were on Ketec..this is a VERY powerful abx..... It is used to treat Lyme very effectively , and is new to the slew of treatments... I personally cannot tolerate it. So it could be the drug being too strong, or a possible Lyme infection or even both??????????? Take Care

HI Nina - I am so sorry you feel so aweful If you have beed feeling worse since the abx there is a chance you could have Lyme disease..... Not sayig you definetly do, but it is a definite sign of Lyme to feel worse when taking abx...its called a herxhiemer effect and it will bring bacl lots of symptoms even old ones 10 fold as the bacteria die off. just wanted to put that out there... I hope you feel better very soon.

I get home IV Saline when I have a bug. I just went through a 3 weeks flu thie summer with diarreah and vomiting... If it were not for the IV fluids I do not know what I would of done.... I also kept drinking no matter what b/c I knew how important the fluids were to keep in me even if they werent there for long.

Right now I have not been able to find a Medication to help. What I do that helps is the following: A low dose xanax is the best weapon I have right now,...I can go from 50% functional to 80-90% with this. Compression Hose Sodium especially celtic/himalayan sea salt and/or salt tabs Electromix added to all my water and fluid intake of at least 3 liters a day... I have found before getting up in the morning taking the salt with at least 16 oz of elecrtolite water increases my volume. I also recently started with a homeopathis cell salt that I think is helping called Nat sul 6x and of course my antibiotics for Lyme. Things I have tried that have not worked include: Florinef Clonodine There are several other things I want to try and will be in the next few months they include: Hexagonal Water Ondamed treatments and Mestinon Its such a guessing game for all of us

I have had episodes of raised BP when staning also... I think autonomic "dysfunction" can mean not only a drop in BP , but just general unstable unpredictable BP as well... At least that is what my POTS dr has told me.

I believe it is b/c of the sugar/calories and also I have read that it does not absord al the way in your system b.c of the ratio of sugar to sodium and potassium..... A healthier alternative would be adding electromix to water. Or adding a 1/4 tsp or so of celtic or hymalayan sea salt to every liter of water....... Thats what I do since I cannot even tolerate a sip of gatorade or any of those drinks b/c of the sugar and carbs......

I voted yes... It was Lyme hands down as the cause. I have gone into complete remissions when I get up to the right dosages of abx.....

Sorry I forgot to add in my list if things that help me: antibiotics for lyme Disease. I am currently on Bactrim, Ammoxicillan, Bicillan, Malarone,,,,, I hope you have found a good Lyme Dr to manage you as well.

I agree that if you feel you need more testing in order to put a better picture together it is well worth it. It is true the POTS is just a syndrome that usually has its roots from something. For me it was from undiagnosed Lyme Disease coupled with a genetic factor, and hypermobility...... I have pursued many avenues b.c I felt it was the best thing for me in the end to have as much info about my body as I could. I think as far as what supplements, meds, Way to eat etc.... We are all so individual that it really is hard to say that one way can work for every person. I am lucky in the sense I do not get sick from eating... I will get bouts of nausea, and fullness, but most of the time it does not stop me from eating.... For supplements I have tried many different things. I do drink a protein shake every day made with Rice Milk.... I avoid processed foods and dairy... I take a homoepathic cell salt Magnesium potassium acidophillus I work with a holistic Nutritionist/naturopath and so my supplents and diet can change every few months. The biggest relief I have seen has been the use of IV fluids when needed, especially when sick. I put electrolites in my water and take salt tabs.....I just started using Celtic Sea Salt and Himalayan Sea Salt for better mineral absorption. And compression hose have been a lifesaver. Also you shouold not feel guilty if you need a handicapped sticker.... There have been times in the past when I truly wish I had one.... So dont beat yourself up about it. It can help you function better and that is what it is all about. Sorry I cannot answer all of your questions.... But just wanted to say welcome

hi Guys - I have been doing some research and found some interesting things about how to properly hydrate... www.watercure.com was a very interesting site as well as the use if "hexagonal water" If you type this into any search engine the info should pop up. I have not tried either method and am in no way endorsing these things but was curious if any of you have tried these methods? I have been using cell salts to help balance myself ( prescribed by my naturopath)..I think they have made some difference which sparked my interest further into proper hydration so just thought I would share this

I have had an appendectomy, Endoscopy, and wisdom teeth removal in the last 4 years... All went ok... I had IV fluids for each procedure and I believe I recovered in the same time a "normal" person would have.

I have had internal tremors but mine are directly related to my Lyme Disease so i am not sure if they are the same as yours...... Taking antibiotica have stopped or very much limited mine. They seem to resurface if I am having hydration issues.

I am a morning person also... I feel the best and usually use that time to do all my daily errands etc.... 4-6PM is exactly when I get that slump, and I rally again around 7 or so..... Funny a lot of us feel the same.

I havent taken Yasmine in particular, but do take Loestrin and have been on it for 9 years now.... Loestrin is one of the lowest dose pills on the market. I remember there was an "adjustment" period to it where I didnt feel well....nausea, and more fatigued but that went away after a while and now I love my pill..... I think it shelps tremendously with my symptoms b/c my hormones are much more predictable, and my periods are MUCH less severe and do not last as long..... I am actually worried about ever having to off of it if I wanted kids b/c I dont know how I would feel without being on it. I know everyone reacts differently to the pill...but if you find the right one I thik it can benefit you. Good Luck

Chad - Have you been tested for Mitral Valve prolapse? Just a thought. I'm not saying you definetly have dysautonomia...... MVP can cause pounding heart..... Also My BP and Hear rate even at its highest is still in the semi normal range.... I knoe some here get extremely high heart rates... I think the highest mine has ever went was 120.......

I think you experienced what many of us have with Dr's and tests.... There was a discussion on here a while back about the accuracy of the tilt and other ANS tests as well as many others here ( including myself) that have not been "symptomatic" at the time of evaluation concluding that there was nothing wrong. As we all know POTS and dysautonomia can go in cycles...... We are not always extremely symptomatic... The tests such as the tilt test and even just being in a Dr's office in a controlled evaluation can not come close to mimicing the daily activity we do ...all the bending, twisting, sitting/standing...situations such as environment and weather/temp changes etc etc...... We react to all of these.... A tilt will never be able to truly document this. Bottom line is I think you should find a new Dr. Have you checked the list of MD's on this site? Ijust wanted to give you some encouragment not to give up .... Take Care

I;m so glad you enjoyed your B day ! I wish you all good things this year...most of all GOOD HEALTH

I'm high strung by nature so adding 2 neurological problems like Dysautonomia and Lyme Disease put me into overdrive...... I am highly sensitive and am an overthinker, I definetly am more effected by situations than probably a "normal" person...... Even news events.... Its not fun to be this way...although my whole family seems to be like this so I am not sure how much is just genetics.......

Good Luck to you Nina! Sorry I am late in responding..... I'm trying to keep up with all the posts! I know everyone will be sending you good wishes!

For me it was undiagnosed Lyme Disease as well as a predisposition for POTS b/c my father and sister suffered from Vasavagal reactions.

Hi Persephone - I was wondering if you have tried to contact Dr Grubbs Office? I keep thinking that it would help you be able to get some treatment going that could get you stabilized. Would your Dr Be willing to work with dr Grubb... Maybe it would be worth a call? Dont give up on your dreams... They can be accomplished. I have found that I am capable of things I want to do, I just have to find different ways to do them than a "regular" person... You will get there...... I think we have all been where you are mentally. .... I hope this episode passes soon for you.

I had one more question for those of you who have gone to see Dr Grubb's NP for follow up: IS the wait time as long as it is to see Grubb ? Last time I waited 7 hours ( Well wothr the wait I might add!) Just wondering..thanks!!

Thanks Gena! So intersting about it acting as a vasodilator.... good info! I ony take it 3 times a week and get retested for it every few months so it changes for me when and how much I take... Natural calm was a little much for me for soem reason... Maybe b.c of the vasodilator part?? Again thanks for the articles. Emily - I am sending those sheep from the sealy matress comercials to you tonight! lol I hope you get some zzzzzzzzz's