Eagle3312

I am experiencing this and going to weight watchers as well. First I had lost 10 pounds when lightheadedness and exercise intolerance started out of the blue. Then I gained 10 pounds and decided to start weight watchers again. I see increased dizziness with dieting although I am more used to it now and am pushing through.

Hi kaevne

Here is my experience. My dizziness improves with lying down as well and usually much better in mornings. It's worse after eating in the night. Also have migraines and alcohol makes it worse. The dizziness itself is a feeling of light almost floating head some times accompinied with weakness. I haven't noticed any specific benefit with hydration though.

Eagle

Sarah

Good to know that you had a such a positive experience there. So the other appointment which i am not sure about is with the autonomic lab. it just says Card ANS. will find out next week I guess!. So far the process of scheduling has been really smooth and every one I spoke to have been very helpful. I am staying there for a couple of days, one day for cardiology and next day for neurology.

Eagle

Sarah

I am seeing Dr Jaeger. I am scheduled for a tilt table, heamodynamics, qsart and one other test in autonomic lab which I don't know what it is exactly.

Eagle

statesof and sarah thanks so much for your advice and sharing your experiences. I am not sure wheather cardiology and neurology would be the best place to start. I am leaning towards both clinics and mayo is a month after cleaveland. Will may be cancel mayo if I get a definitive diagnosis. Am looking forward to get a diagnosis after 6 months of guessing, it all started so suddenly though for me. cleaveland is next week.

Eagle

Hi

I have been dealing with POTS symptoms for a 6 months without a diagnosis. That said I have 90 percent of symptoms and meet the diagnostic criteria as per home pulse monitoring. appointments have been hard to get but this month I have gotten appointment with cleaveland and mayoclinic. My question is should I go to both places or just stick to one?.

Thanks for advice

I work as an analyst and my efficiency at work has decreased much due to episodes of lightheadedness, migraine and weakness.Folks at work are mostly understanding and I have flexible timings which helps a lot. one aspect which people at work 100% don't get is the variation with this syndrome. If I am having a good week and produce a lot then they think everything is resolved and are surprised when the next time I am having a bad week and can't be as productive.

Hi, I was wondering if anyone is using myfitnesspal and would like to be my friend. A bit of history

I was trying to lose weight before pots symptoms started and was doing good. Ever since the symptoms started I lost motivation to diet and could not excersize much and gained a lot of weight. Now am slowly trying to recondition myself and start on diet and excersizes.Would be good to have motivation and support from others who understand what challenge this is!

I walked for a mile yesterday, HR was 130-140 just walking on level ground. Last year HR would be around 100 while walking. Also diastolic is between 95-115. AS have never fainted before, i am wondering is it OK to try swimming without a lifeguard even if i feel a bit dizzy.

I often get diastolic above 100, some times reaching 110 and with systolic between 130-140. I am currently taking a low dose metoprolol. EP suggested moderate salt intake and good hydration for now before i get a diagnosis. She said she was not too worried about diastolic though. I am very sensitive to processed foods like pizza or burgers and used to get very high readings consistently after eating those. so now am trying to eat more home cooked food.

Sarah,

I had urine catecholamine 24 hour tests done which was normal. But I was wondering if there are short term surges that can be detected. Really hope i get a diagnosis at Cleveland. Yes I am in Colorado and we don't have many POTS/ Dysautonomia experts here.

Hi Cronin. I get these symptoms often. couple of days back I had chest pain in the left, back pain, palpitations, pain in the arm, dizziness etc. I had previously gone to ER a couple of times. This last time I was less anxious because I had a cardio work up done recently with no issues identified.

I am slowly getting used to living with these symptoms, though it's scary at times. Wish all the best.

Do you have adrenaline surges in general? Once I started having adrenaline surges from my dysautonomia, even pleasant sensations could set off the surges and cause the symptoms you describe.

I am not sure wheather I have adrenal surges, is there a test to identify these?. My next appointment is April 25th at Cleveland clinic. Hopefully I will get some clarity then.

Yes it might have something to do with lying on my stomach for long. I feel some what better when using a couple of pillows to have my head elevated. I haven't tried hydration before a massage though, so will give that a shot next time.

HI. I have this weird symptom that when i get a massage, I have severe chest discomfort, weakness, lightheadedness and palpitations. I was wondering if others have experienced anything similar? I had no problems with massages before when i started experiencing pots symptoms.

Thanks sarah. I had holter monitoring and it was normal. I had met with an EP doctor today. She said pots/dysautonomia is likely given my history but they don't have confirmatory testing. there doesn't seem to be a good POTS/dysautonomia expert here in Colorado. Meanwhile she adjusted my beta blocker dose, asked me to continue to excersize as possible and have good hydration and medium salt intake.

I don't have a diagnosis yet, have EP appointment in a couple of days. I just wanted to share my attempts at excersize. Last week I went for a walk. initially I was feeling very light headed but was ok later on and walked 3 miles. I felt very good for the next couple of days. Yesterday I walked on the treadmill with very slow speed and had to stop every 15 min due to weakness. I tried restorative yoga today and symptoms of lightheadedness, weakness, chest discomfort all worsened. Don't see a pattern yet, but I am planning to try to be active as much as possible, may be will try recumbent excersizes.

Hi Sherri Lynn. Am sort of in the same boat with many of similar symptoms( but not all) and without a diagnosis. I have an ep appointment feb 19th and with Cleveland clinic April 25th. hang in there and hope you get diagnosis and treatment soon. For now, am recording a lot of data on BP, pulse and symptoms in preparation for appointment and trying hard to stay positive.

I have high diastolic while standing, between 100 to 110, but The diastolic goes down to 65-85 while lying down. Yet to get a diagnosis, it's all a mystery to me.