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Everything posted by cammee

  1. I've been fighting a uti for a week now, been on cipro, it doesn't seem to be helping much,also i have an increase in pots symptoms. Can an infection cause your pots to flare or make it harder to get rid of the infection?
  2. For the last 5 days or so all i want to do is sleep, I'm talking 17+hours a day. It seems like I'm never caught up. When i am awake I'm kinda out of it,the weird brain feeling, vision issues. Anyone else sleep like this in a flair?
  3. If you have pain, where is it located? Is it severe? What's it feel like? I've been in major pain kinda all over my body, like I've been hit by a truck. I do have osteoarthritis so I'm used to that pain, but this is horrible, I feel like I'm 90 years old.
  4. Has anyone every had their meds just not work? I've been doing pretty good but the last couple days I feel like I haven't even taken my meds at all.
  5. I was in er last night. Had 2 bags saline and a steroid shot. Today I don't feel any better. Bp all over the place. In 15 minutes time I had readings of 160-103 sys. To 105/72 dia. Heart rate from 117-153. This *****. I'm shakey. Weak. Nauseous. Headache. Sound sensitive. All the good stuff. Shouldn't the saline have helped? My labs showed my potassium at 3.1.
  6. Anybody have this where their body just crashes and all you do is sleep? I literally took a 16 hour "nap" yesterday. I've done this a couple times before and wondered if it was just me.
  7. Anyone in northern Indiana? I need a new cardiologist. Mine is leaving.
  8. I am appealing my first denial. Hired a lawyer for this one. It's been 10 months since I filed.
  9. I can't stand the sound of anything clanking together, and anything frying. Bacon in a skillet sends me thru the roof.
  10. I spent 5 hours in the er yesterday with a normal heart rate but extremely low blood pressure. At one time falling to 62/36. They gave me 4 bags of saline and several different meds before finally getting it to 79/47 and I convinced them to let me go home. I only take 2.5mg bystolic in the morning so they couldn't figure out why it was so low.( This was 8 hours after my dose) Anyone ever have low bp without being tachy?
  11. Can anyone tell me why my legs would be hurting? It's been a few days now and my knees and legs are killing me. Is this part of the dysautonomia?
  12. I have a headache everyday, as soon as I get out of bed it starts. Nothing takes it away except to lay down. I assume it's poor blood flow to my brain. Sometimes they are severe, sometimes just annoying.
  13. Unfortunately my bp drops pretty low on standing. The 2.5mg bystolic worked good on my sitting hr but bp dropped then also. I added the midodrine back in and it brought it up some when I stood, but not much. Once the bystolic wears off in the evening, I am done for the night. I did notice that with the bystolic that my hands and feet were turning purple with standing. May be another one to add to the no no list.
  14. Anyone else take this med? I've been on it for 5 days, the 5mg was too much for me so I cut it in half yesterday and today. It lowers my sitting heart rate a lot, too much in my opinion, several readings in the 50's standing I climb to about 120. This is on a half dose. By evening it has left my system and I'm on for a big crash with nasty headache. I'm afraid to take the second half of the dose later for fear of a bigger low in hr amd possible crash for morning. I can't tolerate toprol (or the extended release), propanalol smallest dose or smallest dose coreg. I get very itchy and burning skin on these. I was hoping this was going to work for me, but now I'm not so sure. Any suggestions?
  15. Thanks for your reply. I have noticed that my symptoms don't always match my hr or bp. I don't know what kind of pots I have , I'm 44 and have had symptoms for about 9 months now. I have all the "normal" symptoms, light headed, brain fog, headaches daily, pins and needles, heat intolerance, etc. I also have a problem with beta blockers, I just started the bystolic, keeping my fingers crossed for it. I have reacted badly to all the others.
  16. So, I'm still pretty new to my diagnosis of pots, still working on the right med combo. My doctor gives me the impression that he believes that once my tachycardia and bp are under control that I will pretty much be "cured" and everything else I experience will just go away. It's this your experence? Do the other symptoms go away when your heart and bp get controlled?
  17. I'm not having any other allergic issues with it. I just started it on Friday and got the burning sensations after the first dose. I do get the tingling scalp from the midodrine, but that's it. The doctor never called me back today so no answers yet.
  18. My doctor switched me to propanalol 20mg twice a day. I'm having a side effect of feeling like my skin is burning, especially my hands, feet and face. Anyone else have this? Did it go away? I didn't take it today and waiting on a call back from the doc.
  19. Does anyone else get a burning sensation on different areas of skin? It feels like a bad sunburn, very tender to the touch, but no signs of anything. This started about a week ago, I have an area on my shin and on the back of my arm.
  20. I take it for low bp. It does raise my sitting pressure but not my standing one. I'm getting to where I dread taking it cause of the side effects I'm having. The surges and agitation are the worse and I don't feel any more energy. May not be the drug for me.
  21. My doctor put me on midodrine 2.5 x 3. I've been taking it for about a week now and have a couple questions. I am having what seems to be more adrenaline surges,headaches, sensitivity to sound and increased agitation. Is this normal? I really don't like it at all.
  22. That's what mine feels like too. I don't have any answers though as to what causes it.
  23. Thank you everyone. My doctor made it sound like a beta blocker was basically going to fix me, he even thought I would be driving again in a month. I do think the bb is tanking my bp, I run really low to begin with. I don't notice much difference with my tachy on it, and I have more symptoms while sitting. I see him again today so hopefully he will have more answers for me. Does anyone else have what feels like "pressure" on their head? Like your brain is swollen? I have so many strange symptoms, most come and go,but a few are constant.
  24. Im 44 years old with 3 kids and 4 grandkids, 2 of which are a set of 3 yr old twin boys that my husband and I are raising. I was diagnosed in August with pots after symptoms started the beginning of summer. I'm very new to this journey and already finding it to be extremely difficult. My doctor started me on Toprol xl 25 mg. once a day, but honestly I think it is making me feel worse. I have terrible headaches on it, still very lightheaded,nausea,shaky and tired. I had to quit my job ( school bus driver) for obvious reasons. I guess I'm just glad to find a place where people understand this syndrome and how it makes you feel. It really has been a wild ride already and I feel like most days I am barely hanging on.
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