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Loulou

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Everything posted by Loulou

  1. Loulou
    I can't deal with the heat intolerance.its the worst thing ever. Then presyncope next.
  2. Loulou
    Hi everyone, I wish you all a feel good day. I am rarely able to exercise but when I can I use the eliptical trainer. And many times i do get over 200, I don't know how high into the 200`s because the eliptical only goes to 200.And I normally reach my targeted heart rate of 180 within 6 to 10 minutes into my ride. And I usually have to stop because I just begin to struggle breathing not because I can not push further. But I push to get in 20 minutes before I have no choice but to stop.
  3. Loulou
    IDreamInColor, Hi, it must be POTS, the same thing happens to me. I think you described it perfectly. My eyes do the same thing. Its almost as if Ive been druged. My muscles ususally start there thing at night or when sitting. I have just seen a Neurologist about this and she found nothing she thought would be causing these symptoms and says it is my pots. I think it is just our bodies over reacting to not getting restful sleep, or at least that seems to be when I notice it most. Lisa
  4. Loulou
    Hair and skin for me... Lisa
  5. Loulou
    Kitt, Hi, I have the same things going on at night. My doctor, (Dr. Randy Thompson) said I also have hyperpots. I am not currently taking any meds. I did not have any improvements with the many meds that I was taking. I have recently started to get clammy hands throughout the day with flushing and become very hot at times. You are not alone. Lisa
  6. Loulou
    CFMartin78, I just started IV therapy with a script of 2 liters, over 2-3 hours, 3 times per week as needed. I never feel good, so i'm not sure when to go. How do you decide when you need it? thanks Lisa
  7. Loulou
    I'm still sure what type of POTS I have but I haven't been able to work for just over two years now, of course I had been diagnosed wrong until last June. Loulou
  8. Loulou
    I have the same breathing issue, it happens sometimes when just sitting and also happens when I go to the grocery store, I end up being in there a couple of hours with a list feeling like I've only been in there for a short time just to realize its been hours. I think its something our doctors have not figured out yet. Loulou
  9. Loulou
    Hi, I'm getting tested for MCA, what are your symptoms? And if I do have it, do you have any helpful info, other than the above posts? Thanks Loulou
  10. Loulou
    Randy is my POTS doctor too, he is very good, you can find him on the Internet. Loulou
  11. Loulou
    Kelly, I think it's because we stay so dehydrated and our veins are restricted most of the time. I think if it turns out IV therapy helps me a great deal, then I'll get the port. I'll do anything that helps. Loulou
  12. Loulou
    Randy is my new doctor, I have just had my first visit. My last appointment was canceled because he was in the hospital himself. I was started on four new meds, fludrocortisone, clonidine, clonazepam, & Effexor. He treats-patients individually. He takes a lot of time talking to you about POTS. Answers all your questions, he's a great doctor. Loulou
  13. Loulou
    How do you know when you need the IV. Are you just on a schedule or just get it when you need it? Loulou
  14. Loulou
    Which symptoms have changed and are you taking meds for pots too, if so are you extremely fatigued with all the meds? Do you have a neuro and a pots doctor? Do you mind me asking what meds your taking? This post is so helpful I thought I was really losing it. Thanks for the info Loulou
  15. Loulou
    I have issues getting a vein sometimes too. So I understand, but how do you know when you need an IV?
  16. Loulou
    Are all of you having issue with severe brain fog? If not are you have issues with things that are not POTS symptoms Loulou
  17. Loulou
    Potluck, This is so interesting. I have had times where I smell smoke & blood, even taste blood. And lots of deja vu. I wonder just how much it has too do with my severe brain fog or if it does. And if so what can be done Thanks for all the info Loulou
  18. Loulou
    Hi, I was on meds for two months and it made no change in my EEG's nor my symptoms Loulou
  19. Loulou
    Potluck What are TLE's. I'm just learning how to post, sorry, I may be doing it wrong. It's curious. Do you have a lot of brain fog(too much), like me. I wonder if this may be causing some of it??? Loulou
  20. Loulou
    Im unable to get them, but that would be interesting to look at. I have not heard about the epilepsy your talking about but I will research it. I just moved here and have not gotten a new neurologist yet, but will keep this in mind when I go and talk to him about it. Thanks Loulou
  21. Loulou
    My EEG's were spread over at least 8 years, all positive like yours, I was put on meds for two months, and there were no changses in my EEG's so I stopped taking the meds and still have not had anything that I thought was a seizure. So maybe this is another POTS things. thanks for the reply.
  22. Loulou
    I have had four EEG's all positive for epilepsy, but have never had a seizure. Im wondering if this is another POTS thing. Do any of you have this issue?
  23. Loulou
    Does anyone know ways to help make things easier when driving really long distances??? I really need some suggestions.
  24. Loulou
    Randy is my doctor too, he is really great.
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