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Everything posted by Sleepbree

  1. I want to try to go off my bb. It has made me tired and gain weight and I am over it!!! anyone have luck with just the Mido?
  2. Before POTS I could take them 2 at a time and now I can't get up a flight or two without feeling like my heart will pound out of my chest. I have not passed out yet from POTS, but I can tell you I have felt the closest after walking up the stairs.
  3. Yes, I get this quite intensely. I want olives and pickles and pretzels!
  4. PS, as I understand it, if it is Chiari, chiro adjustments can worsen the condition.
  5. I have it and it was diagnosed with a regular MRI and a cine MRI. I have never had an upright. I definitely feel that there is a connection, however, my mm drop is so slight that the Mayfield clinic told me to take a "wait and see" approach. There is kinking in my spine and reduced space for the CSF flow, but there IS flow so right now not worth the risk of surgery. I had to request my MRI's from my neuro, as it was found on a regular MRI and I was told it's no big deal. After reading about it I realized I should have the flow study done, but again, I had to push for that. I was advised to see a Neurosurgeon as opposed to a neurologist while hanging out on the Ben's Friend's Chiari support page, and through discussions there realized that what I was dealing with symptom-wise was very likely POTS so they sent me on over here. Sure enough, that was the case.
  6. I have to correct this, it is actually called Ultima Replenisher!
  7. I just bought this all natural stuff from Whole Foods called Replenish and it comes in different flavors, I liked the Red raspberry best. It was super expensive though!
  8. Ok so this may be related to my Chiari then. I have a 3mm tonsilliar drop that is kinking my spine. Neuro says everything is fine for now but maybe it is causing this to happen. I will talk to her about it.
  9. I wake up in the morning (and sometimes the middle of the night) and my hands/arms will be numb, and I have the feeling that my hands are so swollen that I can't make a fist. It can't be that I am sleeping funny because sometimes it's both sides. Does anyone know why this would be happening?
  10. I am on the smallest dose possible, 2.5 3x's per day. Perhaps I am just sensitive? Things seemed a little better today but then again, I wasn't working on my feet all day. The bending over tip is great, I did not know that!
  11. I don't know if this is normal but I hope it goes away. I have a raging migraine and and it feels like my scalp is going to crawl off my head. Every time I bend over, I feel the feeling I would usually get right before my heart races up, but it doesn't, and then this huge chill happens instead. My standing hr has been in the 70-75 range whereas it was between 95-110. Sitting, 60-67ish whereas it used to be 80-85. In between does, and right before the next dose is due, I revert back to having a higher hr and it starts to increase again when I stand up, usually the hour before I am due for the next dose. I feel like I have been on a roller coaster all day, and also have this weird stare-y spacey feeling. Also, really emotional which is unlike me but I guess that could just be frustration at how I feel. If you are on this, did you have similar symptoms and if so, when did they abate?
  12. Today I had my tilt test and failed. I never quite passed out but I was certainly about to, they kindly lowered the table because they gained all the info they needed by the time I was about to drop. I went from 80's supine up into the 140's within 15 minutes. Throughout the test my bp was all over the place. So afterward my EP came in and said well, I think you have POTS! So in addition to the beta blocker I am on(50 mg Metoprolol, down from 100 mg), I was put on low-dose Midrodine to start and he will see me in 4 weeks to follow up and see how I am doing on that. I am so happy to finally have this acknowledged for what it is, I never got a direct answer from my old EP, the two tilt tests were like night and day (one in office with 2 nurses only, today's in a hospital setting with the doctor present). My old EP called it OI, IST, among other things. It seemed like he was reluctant to call it anything specific. Honestly, I wanted/needed a true diagnosis to know how to proceed with meds and frankly, life. So, I am hopeful the meds will make a difference and the moral of the story is what it always is: follow your instincts. I spent a lot of time wondering if I was doing the right thing by changing docs but overall, my old one wasn't providing me with the answers I needed, and ultimately kept raising my beta blocker every time I mentioned I was not feeling better; when in all reality, the high dose was making me feel worse. For the first time since July of last year, I actually feel hopeful.
  13. i just had mine today and my doc didn't want me to stop my bb. I failed the test anyway and he actually mentioned that had i been off of them i would have felt even worse.
  14. It seems like these tests vary so much. I just got a new cardiologist and he seems to think I may not have POTS based on my first TTT so now I have another one scheduled for this Thursday. I feel so nervous that I won't "perform" that day. I have good and bad days and I know something is definitely wrong. The main differences between this test and the last one are that only nurses attended my last test, and with this one the cardiologist will be right there, and this table is electronic whereas the last was a hand-crank table. Also, I was not given any meds to induce it to happen on the last test, so we shall see if they do that this time. The last test my hr went up over 30bpm, and then leveled out until around the middle of the test where I went back up steadily until I felt like I was going to pass out, I think up to 120ish iirc. There was never any syncope, however.
  15. I would be the same way! So, are your palpitations just "regular" now after the ablation or are you still having episodes of nsvt? I am having quick little spurts of nsvt, so quick in fact that I wonder if it's my imagination. It happens and it's over in a matter of seconds it seems. That, however, is an improvement over what I had been experiencing prior to the ablation. The thing that bothers me about it is that all of this began with similar 'little' episodes so I feel I am waiting for the other shoe to drop, in a sense.
  16. I am so nervous about seeing a new doctor. I feel like I need fresh perspective, however, which has given me reason to seek out someone new. Currently, i take 100mg of metaprolol per day and it isn't really having a huge effect on my POTS symptoms. I still average a jump between 30-40 bpm upon position change, lightheadedness, and extreme fatigue due to either the POTS and/or the meds. I had an ablation for right atrial tachycardia in Nov and it seems that afterwards, I went through a period where I wondered often whether my new symptoms were a result of the ablation or just temporary aftereffects. Either way, my doctor's answer for everything was to raise the dosage on the beta blocker and now I am to the point where I am so tired I can barely function. He says I must exercise and push through it, and for the few weeks that i have done so i have felt no change in my energy levels. the other issue that arose after the ablation was that I was having very sharp chest pains that my doc at first said was pleurisy, but then after it persisted, he did and echo and found a small amount of fluid had collected around my heart, likely due to the ablation. He prescribed an anti-inflammatory for a week and mentioned re-checking for fluid at 4 weeks later. 2 appointments have passed and he doesn't feel it's necessary to check right now. i still have chest pains and shortness of breath. I feel like i am losing my mind. I want to talk to this new doctor about flourinef but I am concerned, because to further complicate things i have Chiari-1 malformation and I am concerned that flourinef can increase cranial pressure, something i don't need. I already suffer with migraines and worry about the side effects, that it can cause bad headaches. I just really want to have my head on level when I see the new guy because largely, with my current doctor, I feel that he has come to the end of the line with my care and opted for quick fix answers like exercise and more beta blocker when maybe those aren't the answer. At least, maybe not MY answers. Any advice is welcome, and maybe I am being too harsh because things aren't moving fast enough for me, I just have to go with my gut on this one. It is daunting, though, to have to explain everything to someone new.
  17. Hi Jen! I too, have non sustained V-tach and POTS. I had an ablation done in Nov but still get palpitations. I understand how scary it can be. I recently flew from Ohio to San Francisco (6+ hrs) and I did okay. Lots of water, compression stockings, and I made sure to eat the salty peanuts on the flight. I stretched my legs out under the seat in front of me and made circles with my feet to keep the blood flow going. On the way home I was having a bit of chest pain upon accent, but it seems chest pains are a bit of a norm for me since the ablation (I had fluid collect around my heart after). All in all I did really well, make sure to pack your bags properly to get through security efficiently, allow for as much spare time as possible so you don't have to rush and stress out. I did find lifting two bags in the overhead to be a struggle (I have trouble bending down and lifting things above my head) so maybe ask your travel companion or a fellow passenger to help you. in retrospect, I should have boarded when they called for people with health conditions, but I am still in denial about all of this and very stubborn.
  18. I had tachycardia that was diagnosed first as SVT, but then when I had the ablation he found it was atrial tachycardia. My POTS symptoms may have been there mildly, as I recall having a horrible head rush feeling when bending over and lying on the floor on my stomach, it literally feels like my head is going to explode. My symptoms had a fierce onset after I was sick with a virus, and the ER docs blamed my tachycardia to taking Sudafed. As I continued to have symptoms we found that it certainly was not because of cold medicine. lol
  19. I'm on 100 mg of extended release metoprolol. It's awful. My doc wants me to take 50 in the am and 50 at night and so that pretty much makes me a total zombie from 3-6. I stand all day which is why he wanted me to split the dose, so I have some relief during working hours. He says to exercise, and that will make me more energetic, but I don't have the energy to go do it after standing 8-12 hrs. We are discussing a med change at my next appt.
  20. Chaos, yes it did suddenly come out of nowhere. The very first time I was taken to the hospital, I had been really sick with a virus. The ER doc said the palpitations were due to taking sutafed. Well, I had taken it before so I knew better, but they sent me on my way and that was that. Then it kept happening, and then the series of doctors appointments started. I wore a monitor for a month and they caught it a few times, and i also started reading a LOT. I actually was referred here from the chiari support forums because someone mentioned my symptoms sounded like POTS. I then requested to do the tilt-table. Amazingly, I literally have the internet to thank for my diagnosis because I think if i hadn't read up on it I never would have put 2 and 2 together and neither would my EP.
  21. Thank you for your replies! Krissy, I know how important exercise is, I really want to, I am just so exhausted. I used to be very fit, running 10 miles on the elliptical per day. I miss that old me. The EP said I need to force myself to do it. I work a job 8-12 hours a day on my feet. I know exercise begets energy, but part of me is also terrified. The last time I exercised, that same day my hr went up to 186 bpm (was wearing an event monitor) out of nowhere and I couldn't help but wonder if the exercise earlier that morning caused it. The EP says this is not life threatening, he swears I'll be ok, but it sure doesn't feel that way when I am having chest pains and palpitations. I am going to talk to him tomorrow about maybe changing the meds.
  22. Hi Corina! Thanks for your reply. I have felt pretty tired all along, but just recently it has started to affect my daily routine.
  23. Hi I am new to the forum. I was diagnosed recently (>6 mos) and it's been a whirlwind since. It was determined that I have POTS (positive tilt-table) along with atrial tachycardia, which my EP then ablated in November. Since the ablation, I've had chest pains that the EP says is due to a small fluid collection around my heart. I was treated with anti-inflammatories and see him again for follow-up tomorrow. My problem since has been that even though the ablation was to solve the issue of palpitations (and I've still had a couple small episodes), I've had a myriad of symptoms that cased the EP to gradually up my metropolol from 25 mg to 100 mg per day. I wear a hr watch and still notice wide fluctuations in my hr, from 80-107ish upon position change even when medicated with the higher dose. I am a busy mom of 3, own my own business, and at the age of 34, am feeling horrible. I feel so tired during the day that I can't focus on anything but the desire to nap. By the end of the night my vision is blurred, and I have no energy for tasks at home. My EP gave me clearance to exercise but the thought is laughable given my current energy levels. I have many questions, and plan to use the search function to see if they've been answered before, but my immediate questions are: if you are on Metropolol, does it make you feel this tired as well, and also if so, how do you manage to function during the day at work? i'm wondering if perhaps i should look into another med. Another keys piece of information is that I was also diagnosed with Chiari-1 Malformation. My neurologist seems to think this is unrelated but it's hard for me to deny the evidence that the two may be related considering the high incidence of people with Chiari also suffering with POTS. Right now the Chiari is categorized as being very mild, and causes me to have headaches in the back of my head, pain in my shoulders, and neck stiffness. I'm feeling that the symptoms from both diagnosis are blurring together and it's hard to determine what is responsible for the day's symptoms. I'm feeling at this point that there's not much value in trying to figure that out.
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