valiz

Thank- you all for your thoughts and well wishes. Pre-op and surgery went well. The surgeon was able to stabilize the arm with a plate and screw. Post op was rough. The RR room nurse was determined to get me out on her time and not what I needed. It has always taken me longer to come out of anesthesia then some people. I kept having near syncope at the side of the bed and flop back down. To make a long story short the two nurses dressed me and got me in the car. at home my husband had to get a neighbor to hep get me in the house in the W/C. I couldn't sit up without fainting for hours, had projectile vomiting . the next day was much better but slept alot. They just don't get it that us with dysautonomia have special needs.

I'm glad this is working for you. How high does your b/p get, that you need to lower it at bedtime. Is that the usual protocol for Northera ? It sounds promising for some of the rest of us. liz

Just an update, I am needing surgery this week for the arm fractures. I go to see ORTHO tomorrow and will find out then which day, I need a plate and screws. Thanks for your kind thoughts and prayers. liz

TOBIONO, this method is called hypodermoclysis. You will find info on the internet. When I was in nurses training in 1970, we had a Dr. that would order this method for fluids. You can not use dextrose but normal saline, which is what us potsies need. No meds can be added. You don't need a pump. I hope this helps. liz

Best wishes to your friend as contemplates surgery. I too will be following this thread. I need surgery this week for repairing fractures in my left arm. liz

I'm left handed too.

I have balance, depth perception issues, blind "spots", and glaucoma. All this may exacerbate my NMH, dysautonomia, PAF. Anyway I have trouble seeing when there are 1 or two steps when I am at an unfamiliar place. I keep walking as though the floor or cement continues. I have had many close calls before but this is the first disaster. I broke both bones in my left arm and completely severed a ligament in my ankle and broke my fibula. i had too much swelling in both extremities and could not have either casted yet in the ER.. I have an orthopedic appt. today. I hope for casting, but still have alot edema. I have severe DDD in my spine and right now that pain is worse then the pain from the fractures. I was able to borrow a w/c from church since I can't use crutches. I love all the support from this forum. Blessings to all. liz

i am always low on rbc's and wbc's both. Corina, what is EPO? northerndarlene, let us know how your test went?

Thank-you for the interesting update. So happy that Tyler is seeing improvement even if it isn't as fast as you would choose it to be. It takes patience and you are the best Mom for him. I love hearing about new research and it offers us all a bit of hope. Take care of yourself and Tyler. liz

I can't give you any advise but praying for you. I think someone will share what works for them. I take Miralax 17 grams 2-3 times a day. It has been such a help to me, but I'm sure you have already tried that. liz

Praying for Tyler and you Rachel. You are both awesome.

Excellent and well written article . One thing the author didn't touch on was the fact that there are days that no outward visible signs of our day by day struggles. So friends, family, classmates etc may think you are dramatizing, somatizing or even have mental illness. That is very painful to deal with.

I am on an SNRI, generic effexor. I have been on it 3-4 years. It helps keep my B/P up and helps my dizziness. I have neurogenic POTS and or hypovolemic POTS. So I think it would be way different for you. I took amitryptlin 10 mg and that took my B/P down and I was passing out so had to stop that. It worked well otherwise. I do hope that you can find a medication that works for you and is without side effects. My thoughts and prayers are with you. liz

I'm sorry to hear others experience what I do as well, but at the same time it is comforting because I worry that I have dementia. I have an alarm for my morning meds and sometimes I shut it off and still forget my meds. Now that is pretty bad. That happens especially if I'm in the middle of something and I think I will take it in a minute but it escapes me that soon. It is scary!

I have been on this medication for several years. It has been the best treatment I have tried (medications). I started on a low dose 3 x a week as well. I have been gradually increased and have been on 0.3 mg every day for a long time now. I have had no side effects. I have NO edema with it. Unfortunately I have gained 10 pounds over the last year, but I don't know if it is due to to Florinef. I want to try to get it (wieght) off...I don't eat that much as it is but I have trouble with exercise intolerance so maybe I still eat too much. Do make sure you have your potassium checked on regularly. I have never had low potassium but it can "wash" your body from it. Also it takes time even after you have a steady dose of the Florinef until you find improvement. So don't be discouraged if you don't see immediate improvement. Best wishes to you and better health to you..

Rachel, praying for you and Tyler, that this new line of treatment will bring about improvement in Tyler's condition. Keep us posted. A home health care nurse would be very helpful until you are comfortable taking over the care of his central line. liz

I am 63 and have been diagnosed at Johns Hopkins with POTS and NMH about 5-6 years ago. I had many symptoms starting around age 11 and had symptoms until my early 30's. Then I went through a "remission" for about 15 years, then the symptoms came back but it took years to get a diagnosis. A nephrologist figured out that might be what I had and referred me to Johns Hopkins for the TTT. I would think that people our age that have been affected by this disorder would be valuable to be studied. That is just my opinion. Remember POTs and NMH were not recognized as a diagnosis until much later then the onset of my symptoms. Kim, I agree with your comments. liz

Welcome! This forum has been a great help to me. It sounds like you have adapted very well and overall are doing well with dysautonomia.

Thanks, Rachel for sharing this interesting and easy to comprehend article. With my brain fog, some articles are too hard for me to understand.

My folic acid was 35.3 with the reference 3.1-17.5. It also states on the report " Results exceeds reportable range of method, test run on dilution. Later I had a Folate, RBC done with the results 565. reference was less than 280. My Dr. just blew it off as being important as my Vit B12 was also a little high. Maybe I could have tests done by lab corp...any ideas on what I should have done?

Sarah, I had an ER Dr. ask me "what is POTS and didn't know what NMH was either. I hate going to the ER because of the ignorance with the medical professionals there. I don't think they are interested in learning about it either...it is easier to think symptoms are somatic.

I'd wear a cooling vest, have plenty of electrolyte drinks, have a spritz bottle and/or fan. Also try to be be aware of when you need to get out of the heat and into a cool setting. Maybe others can help you judge that as well. Prays for you Becia and may it be a fun and safe time for you. liz

So happy for you. You have been through a lot, and am glad the saline is helping you. I have felt better when receiving IV saline after fainting episodes took me to the ER, but haven't attempted to have it on a regular basis. I never felt it helped me more than 24 hours...but even that is a big improvement. Best wishes as you continue with saline IV's. liz

Thank-you Jadecat for the link to the article. I think I will call the Sleep doctor and ask him about this issue and remind him that dysautonomia can cause CSA. DeGenesis, as far as the symptoms I observe, they mostly occur in the transition time from awake to sleep. Many times it takes so many episodes of gasping/awaking until I can stay asleep.. I'm hoping that once things get sorted out and treated that I can sleep better and help the debilitating fatigue I experience every day. liz

I had a sleep study done. When I went back in for my follow-up OV, I was told I have a great deal of sleep apnea and am supposed to have another study done with C-PAP. I don't snore much at all. After I left (brain fog!) I thought I should have asked if it could have been central apnea instead of obstructive. Does anyone know if they can tell from a sleep study if the apnea is obstructive or caused by the brain.. I know dysautonomia can cause Central sleep apnea, from what I have read. Thanks for any help from those with more knowledge then I have. Liz