Pots I'm New To Potsplace

[llynnchurch]

Hey I am new to this website and need help understanding this POTS they claim I have. I am 25 years old and was diagnosed with POTS 2 and 1/2 years ago. I have never felt the same since. I try to understand the logic of it but I have a real tough time dealing with it, and you would think after this long I it would get easier but it hasn't. Maybe some of you will have some coping mechanisms for me. My symptoms are numerous and come and go, but I normally have some type of symptom daily, and they change from hour to hour. They say I got this from a virus, but my question and concern that worries me is " Is there something else causing it? Please Please Help me with any advice whatsoever. My heartrate sitting was 106 and standing it went to 150, so I take a beta blocker (metaprolol tartrate) for that symptom, the other ones are very frustrating. I am going to vent for a minute hope no one minds, and again offer any advice as to why my body is not cooperating with me to help me understand this. The worst part is after I eat, I could eat yogurt and feel bad, the other morning for breakfast I ate 2 chicken tenders and an egg and I felt horrible. After eating, I feel like just laying down, I get bloated easily and full quickly, lightheaded, short of breath, and shaky. It seems as after 4 hours or so, I feel better from that. I cannot exercise at all like I could before without getting extremely short of breath and lightheaded. I guess those are some of the worst problems, shortness of breath, dizziness, shaky, fatigue. I stay so tired, I am able to work at first I was out, and my manager said I may lose my job if I continued to miss, so I am thankful I can make it to work, but somedays have a very hard time making it thru the day because of my symptoms. I loved my job before this, and now I feel like I cannot make it thru the day sometimes. When I get home I normally crash on the couch, and am so tired. It is as if my body says, "welp, no more energy for you today." At work my body cannot handle stress like it used to, small things stress my body out. I also get very flushed easily, I can laugh and flush. If I get excited about something, inside it feels as if I am really excited, or the same with stress. Strange, huh? It is as if my body overcompensates. I am sure I am missing symptoms but those are the ones I can think of now. My life has changed from me being energetic and always going to having a hard time doing normal things. One important bit of info is my blood pressure doesn't drop dramatically that I know of, it is low such as 100/66 most of the time but it has also been 130/93. My doctor thought Wellbrutin would help my fatigue, but because it feels like I get overly stimulated from lights, crowds, laughing, stress, would that be the best medicine to take. Does Wellbrutin slow your system down? Please offer advice, any is welcome. Thank you and I am sorry that you are dealing with this as well.

[EarthMother]

{{{{gentle hugs of welcome}}}}}}

You have, as you no doubt realize from reading the boards and the litany of information on the web site, a wonderful place to ask questions and feel supported within a community of people who understand what you are going through.

I wish I had some wonderful words of sage advice, but really all I can do is nod my head and say ... Yes, that sounds about right.

When I was in my 20's I noticed that my down time from POTS was less and I actually had several good months or even a few years here and there, when I didn't notice POTS as a significant symptom.

Meals are also a challenge for me, as I tend to get post pranial hypotension. So to compensate, I eat several smaller meals every 2-3 hours -- with a protein, carb and fat combined at each sitting. I also find, for me, that my system just can't handle anything "heavy" in the morning. So I make due with some nutbutter on a cracker, or a slice of cheese with rice cake until I can eat a bit more later in the day. By evening I am often able to eat a larger meal. When I was able to work, dinner would be when I could really eat a full meal, because I knew I could go and lay down for a couple hours afterwards. When I was at work, I had to eat very light in order just to make it through the day.

Are you trying any compression garments, salt, or meds that help some of the POTS patients? Practicing any of the countermanuevers when you stand up (like squeezing your legs together to help increase blood supply)? Do you have anything to help with the heat?

I'd advise that you keep some notes about what seems to help. Over time these things may change. But occasionally you forget some of the tips you learned earlier on, and when you are reminded or review your notes you can try these out again.

Good luck, finding things that work for YOU, and welcome again.

~EM

[Broken_Shell]

Hi llynjchurch, and welcome to the forum!

I am sorry for what you have been through the past few years, but I am glad that you have found us here. We understand what you are going through all too well, and I hope that you will find a lot of answers, suggestions, and support here on the forum. You may want to browse the post archives to get ideas about some of the symptoms that you have mentioned. Have you found a specialist who understands and treats dysautonomia to work with? What medications and other therapies have you tried? Have you tried modifying your diet and eating several small "half" meals a day to help with the gastrointestinal symptoms? I wish you good luck and send many hugs as you begin your dysautonomia journey.

~ Broken_Shell

[potsgirl]

Welcome to the Forum! I have a close friend that takes Wellbutrin, and it made him feel wound up, and noises and crowds bothered him more. I take Paxil, which seems to help me with my anxiety, and also calms me down around a lot of stimulation. Do you have any anxiety? Most of us do here. You could certainly try Wellbutrin, or Prozac, which is also supposed to give you energy. Every drug works differently on each individual, so you just have to try them. Most of us are also really med-sensitive, so you may want to try taking 1/2 of the smallest dose to start.

Hope this helps, and know you're among many people just like you!

Peace,

jana

[llynnchurch]

I do have alot of anxiety where before I hardly ever stressed or got anxiety. Yeah I understand the sensitivity to medicines, but more than anything I am scared to take new medicines, because I do not want more problems than I already have. I guess it is the only way to see if it will help. It seems as if my system is round up now and with outside stimuli, but then again I am very exhausted easily. Not sure what to try?

[llynnchurch]

Dear Broken Shell,

Thank you for your verse, very encouraging and helpful!

[ramakentesh]

Yeah most of what you describe I can relate to entirely from my own experience with POTS. Wired AND tired as someone here once put it.

So it doesnt sound strange at all. Have your symptoms improved at all? Are they constant or up and down?

Do you understand the symptoms and why they occur? Knowledge to some degree can help you but it can also yield more questions than answers.

Because your sympathetic nervous system is overactive when you stand, crowded places, anxiety-provoking stimuli, scary movies, etc can make you jumpy or shaky. Why the sympathetic nervous system is overactive in POTS is prettymuch one of the major questions - is it the primary problem and causing excessive vasoconstriction, making you jumpy, your heart pound and dizzy from vasoconstriction, or is the sympathetic nervous system the mechanism being employed by your body to compensate for blood pooling elsewhere? its hard to say at this stage.

There is lots of research going on right now on POTS - more now than ever before, so Id be hopeful that you may have better answers and treatments in the future.

As for treatments, it depends on what you want to treat. Do you want to think clearer or do you want to feel less trembly or anxious? treatments for one can - in some people - make the other worse unfortunately. that being said, many here have found good treatment options through trial and error.

[morgan617]

Welcome, but sorry you have to be here.

I have had this stuff for my whole life, not caused by a virus or anything. The good news is, many people who get this from a virus or trauma seem to recover better than those of us seemingly born with it. It just can really vary from day to day and person to person, which just makes it more frustrating. About the work thing. I worked all my life and I'm up there (54) and realized I just kept having to cut back, but couldn't figure out why. There was really no such thing as POTS when i was young, so it has come a long way. I did work until 2003 though. And had two kids.

Rama is right, the treatment can vary as much as the symptoms, unfotunately it is a trial and error thing. Wellbutrin would not be my drug of choice, I was a nurse for a long time and many people complained of anxiety and stopped it. it was first used to help people stop smoking. However, there are people that swear by it. the most important thing is, people with pots seem to have a big sensitivity to drugs, so always start with very low doses and don't let doctors bully you about this. I take peds doses of almost all my meds. And do just fine.

It's important to have a doctor that is open to new things. it helps if he/she is well versed in pots, but good luck there. I find it's more important that they listen and are open to info you get for them or they can get. And that they are flexible.

This is a very difficult disorder to deal with and it takes a lot of inner strength and determination to deal with it. You will find many strong and caring people on this site, who will totally get everything you say. Baby steps and trial and error. It's good to go to the archives, you will find a lot of info there too. just go to the bottom of this page and see the numbers on the bottom? Or you can type in a word and the posts with that word will pop up. You will probably find info about others experience with wellbutrin. My only experience was on the other side of it. Good luck and again welcome! morgan

[nelgkel]

The worst part is after I eat, I felt horrible. After eating, I feel like just laying down, I get bloated easily and full quickly, lightheaded, short of breath, and shaky.

It seems as after 4 hours or so, I feel better from that.

I cannot exercise at all like I could before without getting extremely short of breath and lightheaded.

I guess those are some of the worst problems, shortness of breath, dizziness, shaky, fatigue. I stay so tired,

It is as if my body says, "welp, no more energy for you today." At work my body cannot handle stress like it used to, small things stress my body out.

It is as if my body overcompensates.

My doctor thought Wellbrutin would help my fatigue, but because it feels like I get overly stimulated from lights, crowds, laughing, stress, would that be the best medicine to take. Does Wellbrutin slow your system down? .

Hello, i am new to the board, but have struggled with symptoms for over 4 years and just diagnosed.I too, am on a beta blocker and that has helped.

I also have issues when I eat, one thing that has helped significantly is to eat several SMALL meals. upon waking in the morning I make a smoothie. 1 banana, strawberries, blueberries, organic yogurt and flaxseed and enough water to cover the fruit. If I do that my stomach has much fewer issues during the day. It is easing my stomach into working again. I do have gastroparesis and large meals, meals with too much acid kill my stomach! have you tried eating while laying on your stomach?? i saw somewhere a young lady had issues similar to yours and she found by accident that laying on her stomach while eating helped..it is worth a try

I am so sorry that you are having such a rough time.

I will give you my experience with wellbutrin and SSRI's. before I was diagnosed and my dr just thought i was depressed he put me on wellbutrin to give me more energy. IT WAS SHEER ****!!!! I felt like I was going crazy, EXTREMELY ANXIOUS, overly stimulated, easily agitated.

SSRI's I also struggled with sexual side affects, it was quite disconcerting!

I was just recently reading an article http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm and after reading about meds used for treatment, I was thinking about using SSRI's until I called my psychiatrist and he looked up what my side effects where when I took it 4 years ago..i could NOT remember...

some POTS patients do well on wellbutrin, but I definitely wanted to let you know about my experience with it, I feel that it made my symptoms significantly worse.

Praying that the lord will calm your symptoms.

Blessings,

kelly in FL

[gwensvilla]

hi there,

just my 2 penneth...

watch very carefully what you are eating and the reactions to it...

we found sugars were the worst offender... followed by the white carbs ..white bread, potatoes, white rice ...

by cutting out sugars.. my daughter had an immediate improvement in symptoms..then when we eliminated the bad carbs,, further improvement..we found that her best time of day was 1 a.m when no eating was being done..or it had been a while since she last ate..

we informed our prof of what was happeneing he ran a batch of autonomic tests, blood tests etc, and taking into account her new diagnosis of eds..he decided to try octreotide...(to try and prevent so much the blood pooling in the abdomen...particularly around meal times) this has proven a turning point in functionality...big style...she for the first time is no longer bed bound..she can get around the house and we are now trying to increase her mobility...

he also upped her ivabradine to help control the tachy, she is on fludrocortisone to bump up bp and blood volume..and she fluid and salt loads..

since you mentioned food and after food reactions, I thought this was worth mentioning..since the octreotide she can tolerate some carbs a little better... but sugar is a no no still..

[llynnchurch]

I suppose I need to eat smaller meals, but sometimes I eat a yogurt and feel badly. My stomach issues bloating, feeling full easily and generally feeling bad is one of the worst symptoms. To add to my list of many symptoms, I feel like a complainer but has anyone ever had problems with there kidneys, they found blood in my urine, which could mean a UTI, but I urinate frequently and alot at a time???? Is that normal and is it related to POTS? My doc game me some bactrim for a short period of time 3days. I also have pressure over my kidney area sometimes I get that after I eat like someone is almost pressing my upper abdomen where the kidneys would be? Strange..yes.. Thank you for responding it was very helpful. I had a feeling that the Wellbutrin might aggravate my already overstimulated body. I am hesitant of taking it, thanks for your input and prayers.

[llynnchurch]

gwenda,

I do notice problems as well with sugars, but especially pizza and pastas, I feel horrible and are good for nothing hours after eating those things. I need to stop eating those things I guess, but it is hard when your husbands wants that in particularly and I normally would enjoy those items as well. What is good to eat?