tjanzing

Thank so much! This is much more information than I had before... I think I'll keep track for a while and see how much sodium I'm getting...my girls say that I already salted everything lots and I never realized just as I'd already been drinking lots of water because I'm so terribly thirsty.

Tessie

I know that I'm supposed to eat lots of salt and get sodium various ways...how much is enough? Can you get too much or not enough?

Thanks-

Tessie

I was exercising half an hour a day before my POTS got worse about 6 weeks ago. It's too hard right now. I get so sick...I hope to be able to do it again soon because I can tell that my muscles are getting weaker. I'm trying for walking...I've gone from no walking at all 2 weeks ago to about 7000 steps in an entire day...on good days....1-2000 on bad days. Slow walking. All your comments inspire me to keep trying!

I struggle to read and I've always loved to read. It's hard to hold a book because my hands go numb and because of the dizziness I have trouble concentrating for very long. I do much better at the computer because I don't need to hold the book and can make the print bigger. I really miss reading..do any of you have suggestions that could help or do you struggle too?

For several years I've had problems with numb hands when I'm sleeping or just waking up. Sometimes now it will happen during the day and I struggle to get my fingers to move. Today is one of those days. Do you know what causes this or anything that helps to get it to stop?

Thanks- Tessie

I got a call from the clinic this morning...they got the test results that had been done for autoantibodies and catecholamines. I had a positive result for autoantibodies and high dopamine and high epinephrine. I did not get to see the numbers or the entire report yet but the PA didn't know what it meant and had a call in to my POTS specialist to ask him. Can any of you give me some insight?

I took Zoloft for 1 1/2 years...it helped quite alot but then this fall I had a setback and we chose to try Cymbalta instead and it's starting to be helpful now.

Zoloft is the first med that has helped my daughter with her uncontrolled migraines.

I have headaches but not daily...my daughter had headaches every day from a very young age and has just started Zoloft (she's 20 years old) and has headache free days now for the first time in her life. She also has epilepsy with what we think is POTS...I am diagnosed with POTS officially. Zoloft has been a godsend for her.

Tessie, the bit about getting a sore throat at the same time reveals the cause of your ear pressure. The middle ear (behind the ear drum) contains 3 small bones, the lining of the middle ear makes small amounts of fluid. The fluid drains out of the middle ear down a narrow tube called the eustachian tube. The end of the tube drains out into the back of the throat near the tonsils.

If the tonsils or other soft tissues in the throat get swollen (from allergy or infections) then they block the end of the eustachian tube. This stops the fluid draining properly and can cause fluid to build up in the middle ear. The eustachian tube also allows air in and out of the middle ear to equalise pressures. If the tube is blocked by swelling the air can't flow properly then you get a pressure sensation and feel like you need to "pop" your ears.

You can help to equalise the pressure by swallowing hard (this is why the old advice to suck sweets when taking off and landing in an aircraft). If that doesn't work then you can use the method used by SCUBA divers - close your mouth, hold your nose and "breathe out" gently increasing the pressure, you should hear and feel a popping sensation.

Flop

Thank you for the input...it's helpful---

Tessie

Hi-

I'm wondering if any of you have ear pressure like when you're up high or going up a high hill? I have it when I stand or sit and sometimes pressure behind my eyes as well. I also have had a sore throat at the same time quite often.

Thanks-

Tessie

I love it!

I have this problem several times lately...we live in the north and it's very cold now. I can't stop the shaking once it starts and sometimes it leads to muscle cramps and spasms. We have a heating pad that I put on to get me through these spells but I'm exhausted afterwards and the pain can be intense. Have to be careful because too much heat causes the fainting and etc. My heart goes out to you and I hope that you can stay warm!

Thank you for talking about this...I'd tried a wedge twice this week and couldn't sleep because I felt so lightheaded and strange. 2 pillows are working for me currently...don't know if it makes any changes in the POTS but I can sleep on 2 pillows.

It has been 2 weeks since I had a viral inf or strep throat not sure which. I started experiencing horrible throat pain & anything sweet in my mouth taste so horrible it will make me nauseous for hours. Other food taste don't seem to be affected altho I am not hungry & have to make myself eat. My main diet has been a bite or 2 or pear & some kind of meat. I thought this would eventually get better but so far not & I still have a slight sore throat & the nerve near my ear is quite sensitive. The PA at my PCP's office that checked my throat didn't know what I was talking about. I have experienced some weird things with POTS but this is insane. I literally feel like I'm going insane because no one knows what I'm talking about & I can't find anyone that has experienced this.

Should I see an ENT or Neuro? I'm think Neuro because of the nerve sensitivity. Thanks.

My guess would be a neurologist (do you have a POTS specialist?) I fight thoat pain and sensitivity near my ears also. I'm sorry I don't have any answers but these problems came with POTS for me. I hope you find some relief soon!

I've had them all my life. I apply makeup every day too to try to hide them but the more fatigue I'm having the worse they get. I used to think they were from allergies but now can see that they are from fatigue.

I went through withdrawal from Zoloft and Klonopin...incredibly tough and did the testing in Omaha for autonomic reflexes and an EMG and a blood test and an hour and a half with Dr. Thai. I developed pain all over my body from the bottoms of my feet to the scalp but am thankful that the pain is manageable now after starting Cymbalta this weekend. Still have pain in my feet and back and abdomen. Dr. Thai said I have some problems with neuropathy that is causing the pain in my feet and hands. Dr. Thai was very kind and thorough. I wish he wasn't so busy as he is now booked till March. My doctors at home are doing all they can to learn about POTS so they can help me. I was grateful that they were supportive and willing to help. My doctors before only thought it was in my head and I'd come away very discouraged.

I'm still having lots of tachycardia and weakness and fatigue but seems so much better after all the pain.

Tessie

The physician thought it might be from withdrawal from Klonopin but it continued after withdrawal was over. Seems to be some kind of autonomic seizure but it I'm careful and don't push myself so hard it doesn't happen. Am grateful for that! They haven't checked of epilepsy yet but I'm wondering if I am having a similar kind of seizure to the ones my daughter has...Thanks everyone!

Yes- I fight pain in my neck most days...I think it's related to fibromyalgia pain points and possibly also to POTS...hope to learn more tomorrow and will let you know if I find out anything from Dr. Pariwatt Thai...

Do any of you ever have full-body muscle spasms and cramps? I've had it happen twice this week...not on any meds for a few days for testing....it seems to be prompted by extreme fatigue or by the cold. I don't lose consciousness but spasm from the neck down and the cramping is terrible. I get through it by having my husband put heat on as much of me as we can....then eventually the muscles will uncramp and I'm exhausted.

Yes I do have this problem as well...it helps to drink small amounts of milk and to not eat much and never after 6:30 at night and no spices. Hope you'll be better soon!

So glad to hear that it helps you! I have fibor with we don't know exactly what dysauto yet but have been leary of Lyrica...this is encouraging!

I'm on both Paxil (15 mg) and Klonopin (.5 mg), and every time I tried to go off Klonopin I would have anxiety/panic attacks after about the 10th day. I could get down to .25 on the Klonopin, but after that, I just haven't been able to do it yet. I hope they're taking you off very slowly. And going off both at once - you're definitely a better woman than I!

Great job!

Jana

I'm definitely not a better woman...I'm relieved that for some reason that I can't explain I haven't had anxiety...have always had very tough anxiety. Have been going down gradually but not nearly as gradual as I would have liked to be able...did just talk to an office worker...could be that I haven't needed to do this...oh my!

Yikes! I hear you. Remember, this will all be a memory at some point. Did you have to do both withdrawals at once?

Unfortunately, yes, to be ready for the appointment on time.

My heart always goes out for my POTS-peeps who live on a day-2-day basis with family members who don't understand. I am so fortunate that my nuclear family is amazing and supportive and that the people that I do choose to cultivate friendships with are kind and compassionate. So much so that in some respects I was caught off guard a bit yesterday when I spoke with some relatives that I seldom chat much with. It has been almost a year since my mother has spoken to me .... right around the time I got my wheelchair (coincidence? not much) ... I had kind of assumed she was just being distant with everyone in her life, then when I spoke with her sister and brother it turns out I was delusional ... it was just me. It would seem that the "family" pretty much thinks I just "play invalid" and that these issues are all in my head. Ahhh we all know that story far too well. One family member actually said some version of she'd rather be dead than be in a wheelchair. (Deep breath.)

There was nothing to say ... we all know when we come up against people who just aren't going to understand. So even as my mind continues to role play all of things I wish I had said yesterday (citing research, reading doctor reports, faxing my SSDI approval over the phone! lol) I realize the most constructive use of my time and efforts was to just put out a simple OUCH to my POTS family who have been there done that and feel the comfort in knowing that I do not walk (or ROLL!) alone.

Gentle hugs to all.

~EM

So sorry...my heart goes out to you! I hope and pray that as more information gets out there that people will understand more...I'm wishing for a televsion documentary etc. maybe Oprah? 20/20? Dateline?

You are loved and not pretending!

Tessie

I'm going off Zoloft and Klonopin before my November 30th appointment for dysautonomia testing so my tests will be accurate. It's been going okay but last night the pain was awful...I couldn't stand any touch at all and I've had pain through my entire body...bottom of my feet, scalp, everywhere. Got through the worst of it last night but am wondering if anyone else has gone through this?

I am glad that I'm going off so the doctor will be able to use whatever treatments are best for me and also so I get a really accurate test.

Tessie