janineerrn

Insomniac here too..... Hey if you see the laundry fairy tell her to get her butt over here!!!! I dont lay in bed and become miserable when I have insomnia, anymore. I just dont fight it. I know Im not going to sleep and i try to be productive. I have the constant pain too.. I really found that meditation helps me soooo much. It was hard at first but now its a great escape from my body! I also have a journal so I can read it a few days later and see how nuts I really am. I get out of bed, light some candles, do the aroma therapy thing, and it helps. The morning is always horrid and the day is loooonnnggggg after a night of no sleep. Some good news, research shows staying awake over 24hrs can help ease depression. PM me if your awake, odds ar I am too. Janine

Hi, I am the nausea queen here. I think it is the blood rushing to your gi system and everything starting to move when you stand up. I get aweful pain in my belly, especially when I first get up, then im nauseaus. Like constant morning sickness. I always sit up in bed for at least 10 min before i get up for several reasons, bp, belly, dizzy..... I try to take a sip of water to get my gi system moving. Tis helps but i have still not found a way to stop the pain or nausea. Janine

I buy organic. We have chickens so our eggs are wonderful. I drink organic soy milk and buy locally made butter. I sweeten stuff with local honey. I can and freeze a lot of the stuff we grow here on our little farm. In the summer you can walk through our yard and eat. We have blueberries, strawberries, razberries, apple, peach, plum, and pear trees, oh and the tart cherry tree and the fig tree. We grow everything from tomatoes to watermelon in the garden, lots of squahes too. The climate here is great, there is only abut 2 months where I really cant grow much. The lettuces pretty much grows all year long, and the peas and the squash and the spinach. Potatoes, onions, garlic....... If I can t eat it I juice it... Going to the store consists of going to the co-op to buy whole grain flours, dried beans etc... all organically grown. Its not real expensive. The expensive part is the meat. We buy from a local butcher and the beef, chicken, pork, is raised local and organically. For those of you who garden, a great natural pesticide... pull up nettle leaves and put it in a barrel with water and cover. Let it ferment. Its high in nitrogen for your plants and the bugs hate it, keeps off fungus, blight etc.. too. I actually pull up nettle roots and all and let it grow near the compost pile. i put the fermented solution in a sprayer and spray everything in the garden. Ok rambling here. I just think its important to eat natural whole foods when possible, rather than trying to get nutrients from vitamins. Peace Janine

Wow, great topic, I have a really strong sense of empathy, always have. The mind, body, spirit thing has always facinated me. I found the higher frequency thing while doing deep meditation. No space aliens tho sometimes i feel like one. I will hush now before I am declared insane Janine

Hi Jen, I am glad for you that you have gotten an accurate diagnosis. There is no answer to your prognosis question. Some people recover, some people function well with meds, some people get worse. i guess it just has to do with what the underlying cause of the POTS is. Some people never know what the underlying cause is. I hope you find out what works for you to control your symptoms. Janine

Hi, Welcome. I am an RN, let me just say that nursing school is nothing like nursing~ your first job will be your real training and are you in for a ride. Welcome to the world of POTS, this is a great site with great people. In my opinion I think you should realize that POTS is a disability so take advantage of any extra help you can get from the college you are attending. Get a handicap sticker and park close, every step you save will help. You need to rest. Rest is very important in staying functional with POTS. In my case, when i was diagnosed with POTS I was working 12 hour night shifts, overtime, working on my bsn, had 2 teenagers, 2 horses and a small farm to run. I had the same problem you have now now with fluid and electrolyte balance. (I agree with michiganjan, get DI ruled out) It took about a year of medication experimentation, IV fluids and a major lifestyle change. Now I am out on disability, I would give just about anything to be able to go back to work and ride horses etc... I hope you can figure out what works for you, its trial and error as you will see... everyone reacts to meds and tx modalities very differently. One thing I suggest is that you get short term and long term disability insurance NOW, if you can, especially if you have open enrollment through your job. Good Luck with everything and if you need help with anything related to school just pm me or email me, Id be glad to help. Janine

Hi, I had 2 liters of IV fluids today and I feel better. Still have a cough that is horrid but I do feel more human. For all of you who have the flu or had it this season, I am glad we are still alive! Geesh, it just keeps sneaking up on you just when you think your better. Thanks for all the tips and kind words, you guys are the greatest! Janine

Oh My... Dont feel stupid..... I would think in the case of being a diabetic it would be ok since you are regularly checking your sugar and have your range. Is your hgba1c ok? And most of the time if you are in the hospital you get a blood sugar done from drawn blood along with your finger stick. that wolud be a good way for you to see if your blood sugars are accurate... do a finger stick with your machine the next time you have blood drawn and compare results. Janine

Hi, The hgb A1C is the blood test that checks average blood sugar levels over a period of months. Its 1 test. There is also a glucose tolorance test. The reason why you do not get accurate readings on the glucomter from your finger with POTS is because with low blood volume and fluctuations in BP your blood is shunted to your vital organs leaving less blood in your arms and legs at any given time. I really think the reason we get these symptoms or i do anyway is because I do not eat right and when my body gets hungry my blood rushes to my digestive system, but who knows. Janine

Same here. I checked my blood sugar regularly at work for a good 6 months and it was always normal. I get the symptoms you describe all the time. You should get it checked out though. Janine

Hmmmm, I have been to Duke and got the complete run around, endocrin to cardio to neuro ect.. This doc sounds wonderful. I wonder if I can get my insurance to pay for a trip out of state. Im in Western North Carolina so Charelston is about 6 hours from me. I was thinking of Vanderbikt thats about 6 hours in the opposite direction. Can you give more details about what he said about meds? Does he work with your Primary care doc? THANKS FOR THE POST!!! I feel like my (our) area of the country is lacking in the medical care we need. Peace Janine

Hi Evie, If I got my masters with POTS you will do fine. I made all my instructors aware of my disorder right away, at orientation. I was also able to ask to take exams when i wasnt in a bain fog. I kept a 3.8 gpa too. The reading was the hardest, my daughter read to me a lot and that helped. I also recorded lectures. Take your classes a t a good time of day for you. It wasnt unusual for me to lay on the windowsill, I kept one of those pillows with the arms in one of my classrooms. Also, take as many online classes as possible, you can do the work on your own schedule. Good Luck, Dont worry, your classmates will get used to you. I got my masters in Nursing, I dont know if that was good or bad but at least I taught them something new. I should have done my thesis on POTS. Peace Janine

I am currently on the potato soup diet... thats all i can seem to manage. I do use reglan occaisionally to empty my stomach, only when I look ready to give birth tho. I think juicing fresh fruits and veggies helped me the most. I gave up on regular food a long time go. Can this girl walk? Moving around helps move things along. Janine I checked out those links, they are good.

Darn, I had a few but forgot them! Morgans is too funny. Janine

I have constant headaches also, from the fluctuations in my bp and combined with tension headaches and cluster migraines. WOO HOO. I tried a bunch of meds that just either doped me up or gave me rebound headaches. There is an accupressure point between your thumb and first finger, in the mucle in the web. You will know it when you put pressure there. Constant pressure for 2 minutes. it works well. Maybe you can get to a doc that can find the underlying cause of your headaches. Hope you feel better! Janine

Nina, your amazing! I had to quit working because i couldnt handle the physical "incidents" with patients anymore. I really dont know how you go on working like you do... You go girl! Peace Janine

Hi, Just when I thought it was over, I have a fever again. UGH, how long does this last? I got a bottle of homeopathic cough, flu drops. No mullein tincture at the co-op. I feel better than I did the other day. Dark Chocolate? I eat that for everything, great cure all.... Thanks All Janine

Being an ER nurse, I totally understand your fustration. The ER rules out life threatening stuff... treat em and street em. If your vitals are stable with in normal limits according to policy.. not whats normal for you, you wait. Sounds like you could have at least gotten some saline while you were there, that may have helped. I get the chest pain thing a lot. I give up on the ER. Icecream sounds a lot better. Big huggggsss!!! Hope your better. Janine

Thanks Everyone! Its 247 am, woke up in a coughing fit. Grabbed the vicks, drank more tea. Will send my son to the co-op tomorrow for tincture. I did accupressure 2 times and it really cleared out my head. The warm moist heat feels great too. I just cant get warm. Now I just have to wait for my heart rate to slow down and I can crawl back into bed. LOL Gracie...... you been trying to make whiskey pops g/f? Thank You Janine

Hi, Just a note on chiari malformations. The cerebral tonsills always move. They are suposed to. The problems come when they herniate and restrict blood flow to the brain. This has its own group of symptoms. Some are similar to POTS symptoms because it involved the nervous system. I have had many head MRI's and CT's. I was told i had chiari, I was told I didnt. I was working at a hospital where there is a doc who does the surgery to correct chiari malformations so just about anyone who went to a particular group of doctors that had slightly abnormal MRI's were sent to this Doctor. You cn get stuck in a mindset or the current trend depending on what doc has done what current education or certification. I know 1 person who had the surgery and was cured and loves this neuro. I know of at least 10 others who have had no improvement or became worse after the surgery. I seen 2 patients come to triage at the ER when I worked there that had the surgery recent and died within an hour of arrival to the ER. Im not trying to freak anyone out here, any surgery is risky, (Im stressing about my tonsills in my throat). Add POTS on top of it and the risks are higher. BE CAREFUL. I guess my point is before you have a neuro go reaming out your brain, Have multiple head mri's and get opinions from docs outside the loop, and bring your films with you to other docs to interpret. I would be the first one in line to have my brain reamed out if i knew it would stop this maddening disorder. I was diagnosed with POTS and now I have bone spurs popping up on my spine and my hips and my shoulder. Is it part of POTS? Meds? or something totally unrelated? Peace Janine

Thanks Belinda... Why did you go to ER? You OK? 2 of you telling me to drink whiskey, hmmmmmmmmmm, you just want me to puke more dont ya I am out of bed so i am a little better. Cant get my heart rate under 120 tho. If I could figure out how to get my bed into the bathroom or my toilet next to my bed, it would be great. Peace Janine

Thank you for the laugh Tearose, I needed it. I cough, I vagal and my bp goes down then my body over reacts and I get tachy yadda yadda. I wish I could quit coughing. Janine

Hi, UGH>>> been hit with the flu. My niece brought it home to me. I have not been able to stand up until today. I made it to my desk chair 3 feet from my bed. I had IV fluids in the ER then I COULDNT pee when I got home. I think I actually wanted to die on saturday night. Its been one major adreanal storm after another, i think I vagal every time I cough. I cant take any cough meds, they make my heart race. I cant take the hydrocodone syrup the gave me cuz it makes me itch and puke. i have been sipping lavender tea... any suggestions for a cough that makes you vagal? My tonsills are the size of golf balls and the doc says they really ned to come out..... Oh just shoot me. Peace All Janine

Hi, I lost over 50 lbs when my syptoms were bad and I was undiagnosed.; because of the constant nausea and my adrenalin rushes. Then I gained about 15 lbs from the meds I was taking. Now I leveled off and Im not gaining or losing but I do get very bloated after meals. Peace Janine

Hi, I have tried all the sleep meds, they dont work for me after about a week. The long acting ambien leaves me drowsy in the morning. Lunesta was great for a week or so, I use Black Kohosh and sleep with my feet elevated on pillows. I manage to get about 6 hours of uninterupted sleep a few times a week. If you find a magic sleeping pill that doesnt leave you groggy in the morning please share! Peace Janine