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advice please ♡


aperson

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hello everyone! i hope you are all doing ok! 

i have come for some advice! i'm very new to using fourms so oopsie if i make any mistakes! 

around this summer, i noticed i began to get lightheaded when i stood up, and it hasnt gone away since :(. i never thought of pots until one of my friends brought it up and i did a little research and here i am! basically, im SO new to all this research and stuff, i thought i would ask some people who have experience with similar symptoms and may be able to help me out w/ some advice on how to proceed! 

symptoms: 

- heart rate increase upton standing (normally 40-70 bpm rise) 

- often get lightheaded when i stand, a few times i have blacked out (but remained conscious)

- i have THE WORST memory on planet earth, and blank ALL THE TIME!! i no joke put ice cream in the fridge once, and just have general brain fog/grog feeling almost. 

im not sure if these are related but i thought i would throw them out there

- throwing up over everything (nerves, excitement, ate too much) 

- i get pretty bad migraines/headaches alot 

- i'm tired after 8 or 9 hours of sleep 

thank you so much for taking the time to read!! i'm excited to get to know some people!! 

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   Hi! Welcome to the forum! I am so sorry that you have been feeling bad lately! I am not sure how helpful I will be, but I will try!

   I also wake up extremely tired, even more so than when I go to bed. I have found nothing to make that better, but I can tell you what makes it worse. I was on Amitriptyline for a little bit because my doc thought that it might help my migraines and it just made it so hard to get up in the morning and made me more anxious. I don't know if it is like that for everyone, but that was my experience with that drug. Also I found that if I sleep over about 8 or 9 hours I feel significantly worse. 

   I have all day everyday headaches/migraines. Mine also come with weird visual disturbances, brain fog, dizziness, lightheadedness, and fatigue. This sounds weird, and this may just be me, but when I drink less water, my headaches are much better. I used to drink upwards of 96 ounces of water per day as advised by my doctor. This would result in horrible migraines that kept me in bed for hours on end. Tylenol and Ibuprofen didn't really help. I am not saying that you shouldn't drink water, but I am just telling you what happened to me. You have to find what works for you. I also found that if I do to much that day that I feel worse, so pace yourself if you can each day. I have also found that ginger herbal tea can temporarily ease headaches, and it is also good for an upset stomach, which you say you frequently have. I have not tried peppermint tea, but I have also heard that that is something that can help headaches. Also, for headaches and migraines if you are looking for a physiological cause that may not be POTS, I would say to look into Cerebral spinal Fluid leaks, and of course an MRI of the brain never hurts just to make sure everything is alright. 

   I also have a HORRIBLE memory! I think what helps for me is writing down important things. Drinking water usually helps with brain fog, although it doesn't help my headaches. Also I have found that reading a book for a long period of time can make things worse, so if you are a book lover like me, then you may need to pace yourself and only read for a little bit at a time, or read before bed. I am not sure if that is something that you experience, but I know that helps me. 

   As most people with POTS, I do get dizzy when I stand up, especially after lying down for a long period of time. When I am going from a lying down to standing position I find that if I slowly do it in steps it helps. Usually I will slowly sit up, then sit until I feel less dizzy and then change positions, rest, etc. As far as heart rate goes, I don't experience that as badly as other people, but I heard that compression stockings/socks are really helpful. I use 20-30 mmhg and I just got them off of Amazon. I also have a pulse oximeter I got off of Amazon that helps me monitor my heart rate so that I can report to my doc. 

   The biggest thing I can tell you would probably be to find a good doctor who believes you and sympathizes with you. If you don't have a good doctor it is hard to get anywhere. Also you are the patient, so you know your symptoms the best. Don't let anyone talk you into thinking that you are making it up or into a treatment plan you don't like. 

    I am sorry that this post was so long, but I hope that some of that helps! I hope that you can find some answers :)  

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hello @aperson - WELCOME! This Forum is full of people that understand what you are going through and have a lot of experience, so you came to the right place! You can find a wealth of information under the "Information Resources" and the "Living-with-dysautonomia" tabs on the top of this page. 

All of your symptoms are typical for POTS, and the HR increase you experience upon standing is a dead give-away. I agree with much of what @Knellie already said, and right now it is essential that you find a doctor that is knowledgeable of dysautonomia. Depending on where you live you can call the major hospitals and ask if they have a physician who treats POTS. You can also refer to our Physician list. Unfortunately most of us here have to travel out of state for autonomic specialist care. 

Due to HR increases cardiologists are usually the first docs to see POTS patients, and the typical tests - besides EKG and blood work - are TTT ( Tilt Table Test ) and sometimes a halter monitor with which they can record your HR over a period of days. If the TTT shows POTS often the first step is a beta blocker, to lower your HR. Also - as Knellie mentioned - increased salt and water intake as well as 30-40 mmHg compression hose are very important and often help tremendously. 

There are different types of POTS, so depending on the type you have finding the right med can be frustrating and a long process. But many people do well with just the above mentioned treatments. It is also very important to cut back on activity - since being upright zaps us of energy ( b/c the body has to try so hard to circulate enough blood to the brain and organs -) we need to spend a lot of time resting between activities. When you feel dizzy etc you need to sit down and rest!!!!!! Please take this serious - I pushed through and ignored my symptoms for years and ended up disabled from POTS. Had I taken the right steps from the beginning I probably would not be as affected as I am today. However - mild aerobic exercise is recommended and helps as well. So - listen to your body, rest when you can and exercise TO TOLERANCE when you feel well enough to do it. 

The brain fog you describe also is typical - since the increased HR is in response to the body trying to get more blood to the brain we often experience a lack of oxygen to the brain, and this causes all types of cognitive issues. Brain fog, fatigue and irritability are a common result.

I hope you will do well, and I wish you the best. Let us know how you are doing! 

 

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