Just diagnosed with POTS..lots of questions. Please respond!
Posted , 4 users are following.
Hi,
After a long time of being accused of being a hypochondriac with severe anxiety, I have finally been officially diagnosed with POTS. While it is somewhat of a relief to have a diagnoses, I know I have a long road ahead of me trying to find the underlying cause of my condition. I was just wondering what some of the common ones were. I struggle with fatigue, muscle weakness, dizziness, digestion issues, severe nausea/loss of appetite, bladder issues, dry eyes that are extremely sensitive to light, dry skin, and dry mouth. I worry about Celiac disease and/or srogens syndrome (sorry for incorrect spelling), but most of all I worry about MS. Or maybe even all of the above I was just reaching out to see how often people are diagnosed with an autoimmune disease after being diagnosed with POTS, because I know that even POTS alone causes many symptoms in the nervous system.
I was also wondering if there is really any hope as far as feeling better with treatment. My number one complaint is fatigue, loss of appetite and nausea being a close second. I pretty much have no faith as of right now because I have to force myself out of bed every day, and feel like I have become a professional actor as far as having to pretend nothing is wrong, or that I’m at least functional. Because usually I’m not and it’s just really hard. I have so many specialist appointments this coming year and I’m really scared. Any advice and/or support would be greatly appreciated. Thank you so much.
1 like, 15 replies
kenaz Guest
Posted
Hi Kim, I am sorry for your dilemma. I am now 71 yrs old and have been looking for answers for 17 yrs. No one had taken the condition to seriously when I blacked out in 2000 while driving. Numerous heart tests and of course drug and alcohol testing with no results. I have a building number of medical issues but the doctors seem to think it is better to throw pills at it than look for the cause. Fast forward to 2017 I blacked out driving and again they could find no problem. 3 months later they installed a pace maker after my monitor showed a heart pause of 3.9 Seconds. We thought the problem was solved. In Sept 2017, I was standing at a counter signing a work order and blacked out. I fell backwards and fractured the rear skull with front brain concussion and bilateral bleeding for which I am still being treated. Since my 2000 episode, I have had 4 angiograms, 4 ultrasounds of heart and 2 of carotid arteries, brain surgery, tilt table test and Qsart test. The doctor has told me we may never find the answer since Pots and Dysautonomia have so many different symptoms and characteristics.
I hope you are able to find answers to your problems, I will keep you in prayer.
Guest kenaz
Posted
logan77790 Guest
Posted
Guest logan77790
Posted
logan77790 Guest
Posted
Guest logan77790
Posted
logan77790 Guest
Posted
Guest logan77790
Posted
hopecharity logan77790
Posted
Please read my comment above if you don't get the help you need with it!!! I'm glad you were diagnosed but so many doctors won't treat for it!
Guest logan77790
Posted
logan77790 Guest
Posted
kenaz logan77790
Posted
Hi Logan, sorry I took so long responding. I just saw my doctor Jan 29 and the Tilt Table confirmed Autonomic Dysfunction caused by multiple Traumatic Brain Injuries. I have most of thee symptoms you all have and a few personalized for myself. I get Botox and Nerve Block injections for the Migraines which help. I take 700mg Primidone for tremors, had a pace maker put in and now trial and error on blood pressure medications. Like you, people can't understand something they can't see and the hypochondriac label really makes me angry. At least now I have a diagnoses after 17 yrs of fighting for answers. I was diagnosed End Stage COPD in 2002 and sent for lung transplant evaluation. Thank God I didn't go that route because it is most likely from Autonomics. I have been totally disabled since 2002 at 54 yrs old so the self work thing for a hard working man is a bitter pill to swallow. Thank God I have a supportive wife and family because someone who is not afflicted can't understand. The COPD community has a saying, :SICK LUNGS DON'T SHOW." The same with any hidden affliction, so when people ask how are you, I usually smile and say OK or stay home away from people. I also have a very loving and supportive church family who genuinely care.
I send love and prayers to my brothers and sisters who walk the same road as I do, Ken
hopecharity Guest
Posted
I'm sorry to hear this. My twins who are actually turning 17 today have been diagnosed with POTS. First of all congratulations you were actually diagnosed. My daughters were told everything they didn't have and sent home with the comment "well I guess you are that special one that we don't know what's wrong"!!! What?!? Yes I went to supposedly the best children's hospital in Atlanta and that's what I was told. They were passing out and staying out for hours. They were having psuedoseizures and couldn't walk or talk for hours afterwards. Stomach issues, sleeping all the time during the day but couldn't sleep at night, headaches, chest pains, brain fog, etc. I could go on and on. I was at my wit's end and my girls were getting worse. Someone told me about Dr Noah Erickson who is in Ohio but will do consultations over the phone or by Skype. He went to medical school and lacked one semester of finishing and decided he wanted to help people instead of just treating symptoms. He started going the route of herbs, supplement, acupuncture, chiropractor, etc. He will tell you when you need to see a regular md. He's not against medicines he would rather help with all natural if possible. First you have to find out what is causing your pots. For my girls it was Epstein Barr virus. He found that out just through simple blood work done at our local doctors office. Dr Erickson sent the medical script down and our lab did the work. He then put them on a rigid diet and supplements. They also had h pylori. It is now gone and their pots is doing much better but you have to be very determined to do what he says don't waiver from it. He is an extremely intelligent man and he sure was an answer to our prayers. Especially when the other doctors couldn't and really didn't care to help us!
Guest hopecharity
Posted
hopecharity Guest
Posted
I'm so sorry!!! They tried to say that about my girls too but I know them! Pots can cause depression and anxiety but there is an underlying cause. I knew that wasnt the real problem!!! I sure hope you can find help!!