summer

There's been lots of good advice given so I don't have much to add other than to say that any doctor looking at your medical records who understands dysautonomia will not be thrown off by the fact that someone along the way suggested a psych cause for your symptoms. I think this is standard in the course of coming to such a diagnosis. When I was finally diagnosed with POTS, the ANS doc who gave me the diagnosis looked at me with a big grin at the end or our appointment and asked, "Did anyone tell you tell you that you were crazy?" ....to which I had to answer, "yes". "Well, you're not!" He told me. He said that very few, if any, patients make it to him without hearing that at least once along the way. To him it just seemed to help confirm the POTS diagnosis since it is such a common part of our journey. So the suggestion still stands on my medical record, but I figure as long a I continue to be treated by doctors knowlegable about dysautonomia, it will not affect my care. Good luck with your decision.

Thanks, Brye. I'm probably going to have a second TTT soon and, although I think my HR has come down on meds, and some of my symptoms have improved, I still have lots of fatigue and brain fog. I'm glad your doctor is still taking you seriously, and I hope you can find some solutions for your fatigue. I'm still getting tachycardia frequently.... just not all the time like before. Thanks for taking the time to reply to my post. Summer

Thanks Dakota, That is still quite an increase in HR. I'm sorry that your daughter hasn't found anything that is really helping yet. It seems to be so hard to come up with the right combination. Thanks for your post. Summer

Hi all! Just wondering, for those of you who have had follow-up TTTs while on your meds, what kind of results did you have? Assuming that meds (especially BBs) will lower our heart rates, were your second and subsequent TTTs normal? I know that even with meds and lower HRs, I still have symptoms. Does your ANS doc still take you seriously, if your TTT is improved? Would you mind sharing your experience if you have had more than one TTT? Thanks! Summer

Hi! Yes, the trial and error phase can be very frustrating. Have you been trying the BB since April 9 or more recently. I know that when I first tried the BB, it wiped me out, but in other ways I felt better. I did find it took a good 2 weeks of taking it every day to build up to it a bit. I'm still fatigued, but not as much as I was off the BB. Also, I was not able to take the BB alone. When I started florinef along with it (to keep my BP up), the combination of the two worked much better. Good luck trying to find something that works for you! Summer

Yes, my night sleep would be over after the first "potty jog"! I have tried eating something salty at bedtime. That seems to help me not to dehydrate so much overnight, and feel better in the morning.

Hi Debra, Welcome to the board! So many of us here can relate to the frustration you are feeling. Many of us have encountered different doctors, all who have had different opinions about us, and our symptoms. Do you find your symptoms are related to standing? Do position changes affect your heart rate and/or blood pressure? I agree with tearose. It would be great if you could see an ANS specialist at Mayo who could perhaps do a tilt table test for you, and try to nail down what it really going on with you. That may be the first step in getting your life back. It is always a huge relief when that day comes and someone finally listens and validates all you have been though ....and gives you a starting point for working your way back. Keep looking for that. It can feel like a very long road, but it does help some to know that others have walked it too, and many have improved their symptoms. We are all at different places on that road. Summer

Mirry, do you feel like you're sliding out of the bottom of the bed all night long? This thought has kept me from trying it.

I know what you mean about being embarassed to tell doctors, Reen. I had one literally raise his eyebrows at me in disbelief. I felt sick to my stomach. Talk about adding insult to injury. Thankfully, I saw a neuropsychologist for testing and he totally believed me and documented my problem. It was him who recommended the cognitive rehab for me. He also ruled out any psych issue that might be causing my problem.

Sorry, Sue- Looks like our questions may be similar. I guess I was typing when you posted .

Thank you for posting this, Firewatcher. I have also been thinking about this for a while because of my brain fog issues. It would be amazing if it could help my brain fog as well as my other symptoms! One thing I wonder about, that makes me a little reluctant to try it, is that it seems to work because of the vasoconstrictive effect which raises BP. How would that effect low flow POTS, seeing as there is already to much constriction? Would it be appropriate for me if this is the kind of POTS I have? Anyone have any thoughts about this?

Hi! I get lots of floaties and tiny black dots too. Usually, I have sparkles along with my black dots.....very pretty . I have also noticed that when my brain fog is at it's worst, these dots and sparkles are worse too. And yes certain types of lighting drive me crazy, especially florescent!

Tearose, You are so sweet, and your posts are always so encouraging. Last fall I posted a question about cognitive rehab and whether or not it would be helpful for our cognitive issues since they are caused by perfusion deficits. It was you who posted and first made me think about the possibility that an OT might be able to teach me some strategies to compensate for my weaknesses. That played a big part in my decision to try it. Thank you so much for that encouragement. It really has made a difference. Your example about the kitchen utensils really lets me know that you have been where I am! That is exactly the kind of thing I deal with at times. In fact, last weekend, I was trying to set the table and was mixing up which side I should put the forks on. Then when I looked back at settings I had already done on the table, I really confused myself! I stood there trying to figure out my left from my right and trying to figure out whether the ones I had done already were correct or not. Things like this used to be automatic and took NO thinking at all. It is impossible for others to understand this so I have given up telling anyone, because it has to sound like I'm making it up. How wonderful it is to have this place to come, and have kind people like you tell me they really do understand, and I know they are not just saying it. Hugs to you for all you do on this forum (((((((((Tearose)))))))))) and for your encouragement to me. Summer

Brain fog is my worst symptom. I feel like over the last couple of years, I have improved somewhat in my physical stamina but the brain fog still is quite disabling. I find it impossible to keep up with all the posts on the board and can not reply to all the posts I would like to. I just fatigue way too easily. Sometimes I feel bad that I am not able to give more support to other members by replying more often, but it is more than I can seem to do. I'm not sure how some of you do it ... it really does take a lot of thinking and energy ...both of which I am lacking. There is no way I could listen to music and work on puzzles, because I can't seem to concentrate with any kind of distraction. I can't talk on the phone when my dishwasher is on in the other room because it is too distracting. I have to mute TV commercials to talk to my husband because I can not concentrate on our conversation with any noise. It's very frustrating. Actually, I have been working with an occupational therapist for a while doing cognitive rehab. I was really unsure if it would be of any benefit since I believed my fog was caused by poor cerebral perfusion. My therapist has been wonderful!! ....so patient and understanding. And I do feel it is helping me. It is not really making the fog go away, but it is teaching me strategies to help me remember things, and focus my attention. It's not happening fast, but after 3 years of this, even slow progress is exciting! Just replying to this has taken me 1/2 hour of thinking about what I wanted to say and typing it and my brain is worn out . Sorry you are dealing with this too, KeXia. Here's hoping our fog lifts! Summer

Nina - It sounds like you're going through such a really difficult time. I'm so sorry this is all happening. It's a lot to have to deal with all at once. I can really relate when you say you can handle things so much better when you are getting enough sleep. I'm so the same. If your doctor offers you something to help, please consider trying it. I know that having something to help me sleep during really stressful times has gotten me through so much better. We are all thinking of you and hoping that healing comes quickly for you in every way. Take good care, Summer

I used to have a favorite dish at a restaurant that had lots of garlic in it. I would feel terrible every time I had it. I began to think it was the garlic. Then I realized it was a pasta dish so perhaps it was the high carbs making me so ill. I never eat garlic or onions alone. Could it be what we are eating with the high nitrate foods?

Why have some of us reacted very badly to SNRIs?

Hi Angela, That is also what I have heard that florid POTS means. And I think you're probably right that that would describe most of us here. I have also heard that some doctors (possibly mine included) would look for a minimum HR of 120 for a diagnosis of POTS, along with the 30 beat increase. I recently read that a HR increase from 50 to 80 with standing could not be compared to a rate increase from 100 to 130. This was because of chonotropic reserve (I don't know what that is). Do you think that the 30 beat increase alone is enough to diagnose POTS or would there have to be a minimum rate? I wonder about this because my rate went from 100 to 144 on the TT, and I was given the diagnosis. But I know another person with similar symptoms, TT tested by the same doctor. Her rate went from 60 to 100 and she was not given the diagnosis (she was however diagnosed with CFS). The only reason I can think of that she was not diagnosed with POTS was that he did not think her HR went high enough. Could this be?

Wow, Ernie. You've worked so hard and come so far! Thanks for posting. It really is an encouragement to us. Do you still faint sometimes?

I get lots of these too. Just curious ....and this may sound crazy .... does anyone else find that sometimes they make you cough? Kind of like a reflex cough that happens when you feel one?

Same here. Even after reading lots on low flow pots, I have difficulty understanding it and how the periferal vasoconstriction causes the increased HR.

CONGRATULATIONS! What wonderful news! You'll be a great foster mom, I'm sure. Children are indeed a lot of work, but so rewarding. And lots of fun and laughs too. Enjoy her... you'll find the energy you need. I'm so happy for you. Summer

Bellamia, So sorry to hear of the passing of your mom. I will pray for you that you will have strength of body and mind to get through the difficult days ahead. We are so blessed to have happy memories of the ones we have loved. I hope you will spend time thinking of those memories of your mom in the coming days. You will miss her dearly, but what a great hope it is that you will see her again one day. We are thinking of you and praying for you. Summer

I don't spend much time thinking about this, but I do have moments... If I have a fear about the "end" of my POTS, it is probably having a stroke. The idea that there is so much vasoconstriction going on in my body (I think I have low-flow POTS), including my brain, does make me think that I have to have an increased risk for this. The fact that I actually have trouble thinking because of decreased blood flow makes me think that there could be damage eventually...like dementia, or stroke. There... I've said it... It can be difficult to acknowlege our fears, but I'm glad you brought this up, Firewatcher. I think we all have fears and even though we don't want to dwell on them, I think it is good to acknowlege them. Summer

Angela, Loved your video! Thank you so much for sharing it with us. I loved the family photos. It's so great to have loving people around us. The song in the background is beautiful. Who is the singer? Summer