angelloz

Potatoes are higher in potassium than bananas. I eat those and it has helped raise my potassium level which is often too low.

I too get headaches when my salt intake increases too much. I try to eat food with the salt and drink more too...which we need to do anyway. I have migraines so I must do a delicate dance with salt intake :).

I have not, maybe someone on a lyme disease or other forum has some knowledge, if no one from here has any experience with it.

Good day all, Topics about mast cell have got me thinking about something. One doctor did diagnose me with MCAD but another doctor said not. Antihistamines make me feel worse not better. I was recently in the hosp for a recluse spider bite ( yep bad, scary several days ). For the burning pain they tried morphine. With only 2 milligrams of morphine my blood pressure tanked, I could take this way back when for severe migraines with no reaction like that. Sooo, can autonomic dysfunction cause this reaction in and of itself??. I have low blood volume, so could that be a factor? Any thoughts? By the way, fever, chills, my entire back swelled beyond belief, a systemic reaction to the bite. I am really surprised I survived this. Happy to be here and back asking questions :).

I have problems with migraines and too much salt sets this off for me so My intake is a delicate dance. I do better to eat foods and add more salt than with the supplements. The caps you are taking sound interesting though!

Thanks so much! One specialist I have never seen is a geneticist. Maybe I should give that a go too!

Congratulations! Yes, a mixed bag but a blessing too! Don't even worry about the 24 month thing. Once you have disability it is much easier to be renewed. Illness is so difficult, there is nothing easy about this whole ride but every day is new. I am sending good thoughts your way!

I was diagnosed in 2010. Mayo showed low blood volume, reduced sweating, autonomic neuropathy. Then by 2014 with my new normal I felt pretty stable. About five months ago I began to feel worse again,more weight loss with a few new symptoms. One was stomach pain ( I have had a CT scan ), another is aching all over like I have the flu. Yesterday, I felt terrible, couldn't stand low BP even sitting and only 13 point difference between high and low number, nausea, chest pain. Called Cardiologist and was told to go to the ER. After fluids BP was some better. Sent me home and had me make an appt with endocrine and said to start retesting some things I had checked out at the beginning. I have a couple of questions. Has anyone else had a severe flare after a fairly long stable period? If so, did you manage to recover some again? A week ago I went through some rather difficult stress and I haven't really slept well since. At the beginning of my illness I couldn't sleep at all. Also, more body pain isn't helping. Lastly, I need a "hang in there".

I haven't tried this drug myself. Did the doctor say it would take a certain amount of time to see a positive response? If your dizzy feeling is a side effect it may stop after you adjust to the medication. Thought I would chime in, but since my onset of autonomic issues I have become extremely sensitive to medications. Good luck. Maybe someone else on the forum has experience with this medication.

I have been to the Mayo in Jacksonville and the Mayo in Rochester. In my opinion the one in Rochester was MUCH better.

I had my first session last week. I felt very presyncopal and she removed a few needles and I did better. Am not certain if it was an actual reaction or if I was feeling too nervous. It did not hurt at all. I am planning 3-4 more sessions just to give it a real chance Will let you all know the outcome.

First of all, I am so sorry that you are dealing with all of this. I don't know if this is possible for you but if possible I think a second opinion is in order. Many of us have been through the " anxiety ", label. You know your body, how it feels and reacts, trust yourself. The increase in heart rate upon standing is very characteristic but there could be other causes. A tilt table test would be a great place to start if your doctor is willing.

I have the opposite problem. Don't know if ER would speed up testing or not. Probably depends on the Dr. you get at the time. You know your body best!

Yes, yes, and yes! I discovered this several years ago. I also have realized that when my fingers are really wrinkled I usually feel much worse. I have wondered if it stems from my low blood volume. Just thoughts. Wish doctors could sit down with our forum members and listen to all the things many of us have in common. Might be some clues in there somewhere. :).

Thank you for the updates and all the hard work you all have put into this forum. It was nice to get a refresher on the rules too!

Hello fellow Kansan! I live west of about 50 miles west of KC. I have had sudden symptom increases several times and like you, wondered why when things had been stable for awhile. Recently, I had a CT scan of my abdomen due to some pretty severe pain. Nothing showed up except for some enlarged blood vessels which can be seen in pregnant women. Well, I am 57 and post menopausal so ??? Probably not that :). I can get very hot too but don't have sweating very often as I have some hypo hydro sis. I have sometimes thought that seasonal changes affect my symptoms. I have been thinking of going back to my cardio doctor just to see if there are any changes or recommendations but get tired of the appointments and trying to explain my symptoms. Hope you are doing better today. Wish I could help more.

I have just recently noticed swelling on my right hand , redness in both. I have had the redness with feelings of heat but the swelling is new.

Hello, I don't really have an answer for you but I do notice I feel really crummy a few minutes after sitting if I have been up and moving for awhile. Also, getting up after being still and sitting makes me feel bad. It seems my body does not respond well to change. No coughing that I have noticed.

If you still have questions and concerns you might think about a second opinion with another cardiologist. No fun I know! Hope you are having a better day.

Absolutely! I have always been a 90's over 60's gal. While I do get scary blood pressure drops, I have had episodes like you when I feel terrible and when I check it is very high for me even at times higher than yours. I do not take and medications although have tried many and this still happens to me too. Others may chime in to what might cause this. I have low blood volume and wonder if mine is related to that. Hang in there!!

My does this all the time! If I watch my pulse oxi....it goes up and down as I breathe in and out. from 80 or upper 70's to 98ish. in breath hold a bit it goes down..breathe out it climbs back up. Next time I see my doctor I will ask about this, I keep forgetting to. When I have my husband try his will jump around a bit but very small range, maybe 4 beats per minute.

Welcome Sylvie, I thought it might help to hear from another older member. My problems began at age 51, I am now 57. It has been quite a journey. I have traveled to the Cleveland Clinic as well as the Mayo. Both great places but when you live far away, follow up care and asking questions as symptoms change or crop up doesn't work. Still trying to find someone with good knowledge close to home. My early symptoms included the opposite of fatigue, I was restless and felt very revved up. Now I have more of a fatigue problem. I also noticed numb spots and had a skin punch biopsy. At the Mayo I was diagnosed with autonomic neuropathy, along with hypovolemia. I drink constantly! Too much salt increases my migraines so it is a delicate dance. I had to stop teaching, and I miss this everyday. I am impressed with the way you are accepting and adjusting! Over time some things have improved. I am able to sleep some now, I don't always feel "strange and off balance" in stores. I also sort of know my symptoms better and how to deal with them. Let me know if you have any other specific questions. I do feel like at my age my body just couldn't find it's way back to normal. Wishing you all the best!

Hope everyone is doing as well as they possibly can. I don't know what I would do without my forum family! I have had a 3 day migraine..getting a bit better, then last night woke up to fever , chills, aching, sore throat! Darn it all!!!!!! Well, one thing this illness has taught me is how to cope with feeling bad .

I get spots and areas that feel bruised when I touch them. I think this is allodynia.

If you can hang in there and wait...the tilt table would give you and the doctor some good information I think. But if it seems unbearable stressing too much isn't good either. Good luck and let us know how it all shakes out!