jjpots

Welcome! I have been dx with POTS and have only fainted once. I understand your frustration with your doc. My cardiologist told me it's not life threatening and basically just deal with it. My pcp is actually very understanding though and seems interested in helping me figure things out. I agree with the others that if your doc doesn't shape up I would move on. It's great to have this forum to talk to people who actually understand what you are going through. JJH

I am thankful for my faith, I am thankful for my family, I am thankful for my friends, I am thankful for this site and the great people on it, I am thankful for a warm house as the wind is blowing cold outside, I am thankful for a full tummy and I am thankful for the florinef helping with my rapid heart rate. JJH

I'm not exactly sure when I got pots but I do know that I don't usually run a temp. I have to be really, really sick to run a temp. Also, I was just in to my pcp last week and my body temp was 97.1- interesting! JJH

I read a ton of the posts on florinef but didn't come across this. I can see where florinef would help the hr and bp issue which would in turn help the dizziness caused from these issues. My question is, there are all these weird symptoms people with POTS have and they can occur even when we aren't having hr and bp issues so, will it help with the brain fog, unbalance, fatigue etc.??? Any input would be appreciated. Hope this isn't a duplicate post. Thanks, JJH

Rachel, I hope you don't mind, I just pm you

Thanks Rachel and Karyn, I've already made a few changes and today was a bit better - thank God! I'm trying to start up the chart again with stickers for positive actions. I need to go over the positive actions each day though so they remember what I expect (or hope) from them. I also realized that I need to quit putting them together for everything. Because they are twins I've just always done everything together, such as, getting ready for bed. I don't know why it didn't dawn on me earlier to send them to brush and stuff and diff. times. It was better tonight but they still argued about who got to go in first! Now that I got past the first night hopefully we can just alternate who goes in first. Good news too- the fish is still alive! The story is getting slightly more amusing to me too now but was in no way funny yesterday. My emotions have been all over the place these days. My PCP just put me on florinef to see if my POTS gets better if my emotions will level out too. Thanks for chatting. I look forward to reading what everyone has to say JJH

I find that the florescent(SP?) light at target or cub plus all the stuff going on there make me feel kind of out it and off balance sometimes. The light at home don't seem to bug me as much. JJH

Thanks for all the input. I have told them what I expect but they don't really seem interested in that these days. I did make a chart but they only stayed interested in that for about a month. I wrote down all the positive things they could do to earn stickers. It did work when they were interested still. Today I told them mommy really needed to lay down because I wasn't feeling good and to please lay down or play quietly. (Dad and older brother are gone hunting) Instead I ended up having to run downstairs to save my oldest son's fish. They stuck one in the filter and the other flopped out and was stuck between the wall and his dresser. I finally thought to take out the drawers on that side and was able to move it just enough for the fish to fall to the ground so I could reach him. He floated sidesways but with lots of prayers for the little guy, he is still alive several hours later. I'm hopeful he will make it. It probably sounds funny but I was in tears. They had completly destroyed my oldest son's room (which he shares with my 5 yr. old boy) and I was already feeling bad. Any who, I've been trying to explain the whole concept of respecting others' things and obeying your parents. I just feel at the end of my rope so often these days:( I called my dad who lives in AZ and probably got him worried since I was crying on the phone to him- again. At least the twins are in preschool this year so Mon., Wed., Fri. they go from 12:30- 2:30. Tomorrow will be a better day I know. I just keep praying for patience and wisdom. It's great to have such nice people to chat with online too:) Thanks, JJH

I know this isn't exactly what you were looking for but i just came across a site that talked about Dr. Fischer. It is: www.adiwebsite.org/index2.html, and then I was under the heading "news". I have seen and am going back to see Dr. Low in neurology at the Mayo and someone else on this site told me that Dr. Fealey in neurology at the Mayo is excellent. Hope that is us some help for you and your daughter! JJH

Just curious if anyone has tried chiropractic to help with POTS. I've heard that chiropractic helps because if your body is in proper alignment it performs more efficiently and so on so wondering if anyone has had experience with it? JJH

I was wondering for those of you with POTS and small children what do you do when feeling bad? It seems to me like for the past month with me not being as active and needing to take it easy that the kids have really got out of control. It's like they know I can't chase them around and it's hard to keep running up and down the stairs to see what they are getting into. My oldest just turned 11 today and my twins (boy and girl) are 5. They had my oldest son in tears because dad was gone, I was trying to relax and take a tub and they were just terrorizing him. I could go on and on but just wondering what tips anyone has for when you aren't feeling well to keep the house from chaos???? Thanks- JJH

Hi AJW, I used to take advil but then heard something negative about that with heart stuff so I switched to Tylenol. Maybe some Motrin would be a good idea to have on hand for those specific headaches. Haven't had one in several days so I'm hoping I'm through with those for a while. My PCP just put me on florinef though so hope I don't get those headaches that everyone has talked about! JJH

Madeline, I'm glad you posted this question. I've been wondering the same thing. I'm looking forward to seeing how everyone describes it. I'm just recently figuring a lot of this out for myself even though I've been dx with POTS for about 8 or 9 years now. I'm only recently experiencing some of the other weird things besides the tachy, and fatigue. JJH

Hi Nolie, I don't think I've ever chatted with you before. I haven't been on the site for very long. I'm sorry to hear what you are going through. I was just in at my PCP today and he was doing a depression evaluation on me too. I don't think my POTS doesn't give me nearly as much trouble as yours:( My PCP was saying how it's not uncommon for people with chronic illness (syndromes or whatever you want to call them) to experience depression due to feeling yucky all the time. I thought, that makes sense. I am going to start florinef again ( had many years ago) and see if that helps before we look into depression meds. It sounds like you have a good PCP though and a supportive family. Thank God for that! I'll say a prayer for you. I can relate to the hubby thing too. Mine works full time plus goes to school (apprenticeship program), and has been working side jobs to keep us afloat since I haven't been able to contribute much lately. Take care, JJH

Melissa and Brenda, Thanks for the input. I don't feel like they are migranes. It doesn't seem to be on one side, just base of head/neck and sometimes up from there a little too. I found another forum where they talked about headaches at the base of their heads too so I guess it's not abnormal for us. Today I felt another one coming on so I took 1000 mg of Tylenol before it got bad and then that seemed to help. Weird that it's the 3rd this week though. I have been trying to keep track of all the strange things so I can tell the dr. next time I go in. JJH

I've had two pregnancies. I guess the pots happened sometime after the first. I had twins 5 years after my first pregnancy and my cardiologist said that the prenancy would be good for my pots (not goot for the pervious cardiomyopathy). I felt great for the pregnancy except for my other issue flared up again right at the end. My twins are now 5 and it's only been since a recent virus that I've expreienced the symptoms of brain fog, more fatigue and the dizzy/ off balance feelings. So I would have to say the pots didn't affect my preganancies adversely at all. JJH

I did a search on headaches but didn't come across this so hope it isn't redundant. Since I had my sick spell amost three weeks ago I've been having all these weird new issues. Most recently I've been getting headaches that don't want to go away. I've been taking tylenol but hasn't really been helping. It seems to be at the base of my head each time. ( I don't usually have many headaches and when I do they usually go away with the first pain pill.) Anyway, after having the headache awhile I get that "off feeling" not really dizzy but more like off balance. Has anyone else experienced these symptoms together or is it just a coincidence? Thanks for any input! JJH

When the called back to schedule they actually said that my cardiologist wanted me to see Dr. Low and so scheduled both. JJH

I know this was originally posted a while ago but I just read it. This has just started happening to me and it's so frustrating. On Wed. I went to drop my twins off at preschool and couldn't remember my phone number to check them in with. Then, I went out to the parking lot and couldn't find the minivan. I was seriously starting to freak out that it was stolen. Of course, I just forgot where I parked it! I also took a plate full of meat to the laundry room to grill! Weird. Glad to know it's not just. Not sure what is bringing this on for me. JJH

Hi Tearose, Well, after talking with another family member I was convinced to go back to the Mayo. Looks like it will be the beginning of Dec. but we're still working on the exact date. I'm trying to get it after my dad flies in from AZ. Then I would either have someone to go with me or someone to help watch the kids. They want me to see the same cardiologist as before. I told them to make a note that I had had another cardiomyopathy since last time I was him but that my fx was back up. I told them I thought i was more of a pots issue now. I guess we have to start somewhere so that's o.k. I really liked that doc. Maybe I'll get to see your Fealey guy. (I have to laugh about his name though) Sorry to hear you are not feeling well. Hope things improve quickly for you! JJH

I've noticed that when I'm tachy I seem to rush everything I' m doing. I also and short tempered when I'm in a tachy episode usually only if it's around 130-160 pulse. I'm easily irritated and then I'm tired after an episode like that and then I'm fine mood wise. JJH

Yep, the cardiomyopathy is completelly different. It's basically a weakening of the heart ms. Mine was believed to have been caused by pregnancy.

Flop, I was only on the Benicar. I have never been on a Beta Blocker. My cardiologist isn't looking to put me on anything for the cardiomyopathy because in the MRI that they did there was only a little damage and he didn't think it warranted me being on meds. Or, do you mean on a med for the POTS? Is that what the Beta Blockers are for? I'm so confuesed! JJH

Hi Flop, O.k., I guess the brain thing again. I had to read your lol thing like 5 times before I got it- ugh! JJH

I beleive when I was there before I saw Low and Dr. Borgeson in cardiology but he was in the heart failure clinic (because of the cardiomyopathy) so not sure he would be relevant now. I don't really remember much of Low so maybe I'll see if I can see your guy. I'm leaning toward the Mayo just because I like the way they work together. I think my pcp is good. He really listens and I think he works good with the specialists. Chat later, JJH