bellgirl

Kim, I just thought of you yesterday, and was concerned for you, hoping you were Ok. Glad to hear that your still hear with us on Dinet...They really don't understand what causes all these things to begin with. Auto antibodies cause autoimmune processes, which sometimes goes along with Dysautonomia, along with connective tissue disorders....so there many unanswered questions, but the more they find out, the better they can treat you, and the more they can treat, the better you will feel. Better quality of life is what it is all about. Hope they continue to find all the answers for you!! Joy, Kim

I agree with Songcanary, your body gets to the point where you can't keep pushing, rest when you can, and then gradually work your way up again. I, too was actually extremely dizzy/vertigo and had major vision problems, as well, to the point of almost making an appointment with a neuro opthamologist, but with meds, supplements, fluids, exercise, and resting when I can, I too, have improved, but I was sick for 13 years without medication. I've been diagnosed a year now, and with the right balance, I'm a lot better.

That's great Lemons Celebrating with you!!...I've gotten a lot better, too, on my meds and supplements. Vitamin D3 and CoQ10 helped immensely with meds, fluids and exercise!!

Sorry, that happened Millerla, but there are private Face Book sites that you can get on, that I also encourage and support others on, that is private, just for us POTsies. If you are interested you can PM me, and I can give you the woman's name that runs the site, and you can PM her to get on the private site. Tell her Kimbell sent you, and she will know who I am...I work on the site, too...

Carrie...she gave her full name, and we are on other dysautonomia sites together, too...You can usually figure it out Since this is public, I will not share my full name, since I've had a few creepers lately, but my first and middle name are already present, and I live in Alabama. Linda lives in Ohio, along with Montie. Hope this helps!! There is a site for just location for potsies on Facebook, too, so you may be able to find some there, as well!! There is also a site Dysautonomia/Pots Awareness and Support on Facebook which is public, but there is also a private one on FB, too, so if you send a message, you can get on the private one, too...

That's wonderful that you are able to do more living. That is truly our goal, to feel well enough for the simple things in life that others take for granted Glad you were determined to find answers and had the doctors who helped you through the process. Thanks for all your insights as well in regards to diet and treatments!!

Worse....sorry, but I wasn't treated until after the fact, because I kept blaming everything on menopause!! It was horrendous. Just being honest here, but Iknew there was more than met the eye. I was dying before going back to doctors that thought I was crazy...Would a nurse in her right mind spend all her time in doctor's offices, if she wasn't sick!! I was desperate, and then didn't have good insurance, but I told my husband, I had to go back and get some help!! My new insurance kicked in the day I had my colonoscopy (finally full time work and good insurance in the nick of time, only God's doing), and I had just been to a new ENT Dr. Pappas Jr.,who diagnosed my Autonomic vertigo, and the rest is history. He referred me to Autonomic Disorders Center of Alabama in Birmingham. In another year I would have been too old to be accepted there!! I was 54 at the time, now 55...

I just thought of asking my doctor for an antibody titer in regards to these viruses. I have trouble with small outbreaks, and was wondering whether I should get a vaccine. Have the mouth and lip sores, but had an ankle breakout, once that was bad, a few years back, and have had several per year on the upper part of my buttocks for lack of a nicer term. Yes, it is very uncomfortable!! Yes, and we all have had chicken pox or mono somewhere in our past. Did you know that Guillian Barre or Epstein Barre is also a variation of the same virus? When I first started getting symptoms of dysautonomia after a virus, I thought it could have been a mild form of EBV. Right sided weakness and misalignment of my left eye...I guess I'll never know...

Kidney stones can be so painful. My dad had uric acid stones. I sometimes have flank pain, too, but I don't want to have to go to another doctor. Hope they find out Kayla!! Prayers...

Thanks Naomi, and Anoj...I'm thinking mine is the small fiber neuropathy I find it interesting that each one of us have something autoimmune related as well...autoantibodies like FriedBrain said

I did take it years ago for awhile, because of the heart affects...even then I knew something was wrong with my heart and vessels...but I haven't been on it lately. Better for those with hypertension and POTS, probably...those of us with the rare combo, but could cause more tachycardia. You are always theorizing, researching and studying. I too admire your diligence and perseverance for us all

Are you on your monthly cycle? That could be a factor...Did you clean yourself front to back? Hope it wasn't contaminated. Maybe it needs to be redone.

Good news...hope you have good results

I have to be really hot to sweat...I used to be the other way around, dripping all the time. I think it is the dysautonomia, where our temperature sensors are all askew. I don't think it really affects treatment unless it is a major issue.

Could possibly be Sjogren's, which is an autoimmune disease; You can get a diagnosis for that by your doctor. I had blood work for that, but then was told a lip biopsy confirms it. I have very dry eyes, but then something pours out of them on occasion, too, which is just weird. No one can answer my questions on this, and it's frustrating. My eyes get very red on occasion, too. I can hardly wear my contacts anymore. I also am light sensitive, which is considered part of dysautonomia. Sometimes the sympathetic nervous system can cause dilation of the pupils which causes blurriness and light sensitivity.

We all seem to be worse in the morning, and driving really sets me off, because of motion sickness. I'm having a good day, if I leave before noon

Used to have a little patient with this at Duke Medical Center, years ago. I loved her...I know, as a nurse you aren't supposed to have favorites, but she was one of mine. This is wonderful news

Rich, I believe you are right....I agree with Issie, too...I would have marked mito suspected. I am on several mitochondrial supplements, so I can feel better without my doctors knowledge at present. Ones that are used for MS, since many of my symptoms mimic this disease, even though I supposedly don't have it. Never had a spinal to absolutely confirm, though,although blood work, and brain MRI were normal, except for deficiency in Vitamin D. I just read you can have spinal MS only. I will tell them when I go in September! Taking care of myself, the best that I can. So much more energy!!

I agree with McBlonde...the stress is what puts us over the edge. Sedentary is never good either, even though I know you had to be tired on your feet working. Exercise is the key to success with this for most of us, if it can be tolerated. It really helps with cardiac return . Calf muscles built up are so important to prevent blood pooling...

How much klonopin are you on? I only take it at night for sleep, .5mg. Are you tachycardic? Any dizziness with your nausea? Some take zofran for nausea. I took it for riding in a car and taking a boat ride, and it worked well for those activities, although I found it to be binding. You may need to see if they can call you, if there is an appointment cancellation with your cardiologist.

I have put myself on several supplements over the last several months that are mitochondrial based, and I'm amazed in the difference in my energy levels. I'm a new person. I'm on CoQ10 100mg/day, L-carnitine 500mg every three days, or when I have heart pain, (MVP), Alpha Lipoic Acid 200mg every 3 days, B complex with C every other day. I've read that Alpha Lipoic Acid is good for metabolizing sugar, plus has antioxidant effects. Thought that might interest you Pot Luck. I'm also on increased doses of Vitamin D, because I've been low by blood work; now I'm on 2,000 IU's, but if I start having muscle or bone pain I increase the dose and double for a few. I was initially on 4,000 IU's per doctor's order for a month and 2,000 for maintenance. I'm on some other supplements listed below. I have decided we are our best advocates!! I am using the knowledge from my nursing and the brain God gave me . I've felt badly for too many years before diagnosis, 13, so I need to do all I can to take care of myself. I have Pure Autonomic Failure, Mitral Valve Prolapse and Sleep Apnea with many neurological symptoms that mimic MS, so I'm following MS protocol, by my own research, and it's working for me.

I'm on both, and they really do help. I was deficient in D3 by blood work, and it increases my energy!! Magnesium helps our bones, too, but can cause decrease in your blood pressure, but I only take it on occasion, along with L-carnitine for my heart (MVP), and Alpha Lipoic Acid for metabolism and antioxidant properties. I take vitamin B complex every other day. Take D3, CoQ10, and flax seed oil every day

Wonderful news What's normal anyway...lol

Thanks for the info, Rich...I'm now used to my beta blocker, long acting bystolic with 12 hour half life, and my shortness of breath issues are so much better than when I was getting adjusted to the med.

So sorry Issie; I know you were hoping for an answer. Sometimes it just isn't the one that logically makes sense! I hope you are able to find some supplements to find relief. It's awful to have too much fluid hanging around in your head:o( Wish they had an answer for you, but good job on giving it a try