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Everything posted by Stace915

  1. I started Octreotide this morning. Grubb prescribed it for me and I've been awaiting its arrival. In a way it's a last resort for me, as we have tried all other treatments and combos that my insurance will cover. I had high hopes- instead of increasing my BP like it was supposed to, my BP is fine but my heart rate is 53!! I got a bad headache immediately after the injection and started to get really hot and more lightheaded than I was before the injection so I checked my vitals. I never get bradycardia, only tachycardia. I can't believe how awful I feel!! Left a message for Grubbs office. I'm supposed to do the injections 3x a day. If I don't get a call back today (which I probably won't) I am not using it again until I speak to someone. Has anyone else had a similar experience?? I feel so terrible that my disappointment hasn't even settled in. Thanks
  2. Thanks Carol @potsmama I am vegetarian and have eaten clean for a for years (most of the time). I don't seem to get any reaction to gluten, as I've tried a gluten free diet in the past. I do take 300 mg a day of Zantac but for reflux, if it will help with the allergies great! I am in the process of going through some tests for my digestive system and I'm very limited with what I can eat, but once that is finished I will look into some more of these options. I would love to be on less allergy meds!
  3. No @katybug I haven't heard of that. I'm not a huge fan of prednisone but if it would knock whatever it is out of my system, it might be worth it. I'll mention it to my doctor. Thanks!
  4. I know this thread is from years ago, but I'm wondering if @POTSMama ever found any relief from the itching. I have had POTS (which my cardio told me recently that since all of my autonomic functions are getting worse, I really should call it Dysautonomia), I also have EDS, and fibromyalgia, severe allergies. I currently take 360mg of Allegra, Singulair, Atarax, Zyzal and get weekly allergy shots. My skin is still itchy all the time. My allergist is baffled bc the meds I'm on should control the itching and hives. He sent me to the dermatologist. Nothing is visible on my skin so he was also baffled. Suggested I switch using cerave lotion, and unscented Dial bar soap. I saw a bit of an improvement for a few weeks and then it got bad again. I cover myself in cortisone cream but it usually doesn't help much. I have scratches and bruises all over my legs from bc I'm so itchy, I have to scratch. Also, the skin under my bottom lip is the itchiest spot. It's been like that for over a year-but there are no products that I am using only in that spot and there are no visible hives!! We have done food allergy testing a few times and I have completely cut out of my diet the foods that I'm allergic to. Does anyone have a suggestion of what could be using the itching? Or what to use to help it aside from ALL the allergy meds I'm on and cortisone cream? Thank you!!!
  5. Thanks Sarah! I actually found something very similiar late last night. Based on how I'm already feeling today, and reading that... I'm going to skip it. I'll probably mention it the next time I see my cardio, but it sounds like it could be a recipe for disaster! Thanks again ?
  6. Hi has anyone tried cryogenics/cryotherapy, specifically the cold chamber that you are in for 3 minutes? I have read a lot about it and it sounds like it would be helpful for my Fibro and EDS pain but that it could also help with some of my POTS symptoms. I am little concerned about the extreme cold possibly causing me to have a POTS episode. If anyone has tried it, please let me know how your experience was. Thank you!
  7. Hi Katybug, I was covered by FMLA but it only protects your job for 12 weeks and I have already been out longer than that, so I am no longer covered. A family member who is an attorney is going to be working on the appeal with me. My local cardiologist is writing a letter for me, I am compiling articles from research journals/publications and I have an appointment coming up at Cleveland Clinic and with Dr. Grubb. I am hoping that the doc from Cleveland Clinic and Grubb will also be willing to write letters for me. I am fighting this appeal with guns blazing!
  8. I googled it and I am still a little unclear. It looks like it is a tiny IV, do you do this yourself at home?
  9. Checking in again. I spoke to a family member who is an attorney and he is going to help me put my appeal together. I have been reading articles and abstracts, does anyone have any specific info regarding what they put in their appeal for LTD (only if it was accepted of course ), or have any articles specifically talking about how symptoms can sometimes be under control/ "manageable" for years and then be exasperated?
  10. He was at NY Presbyterian uptown. I moved 7 years ago, not sure if he has moved.
  11. Dr. Marc Gordon on the list above is the first cardiologist that I saw, he did my tilt table test etc and diagnosed me. After seeing him, I went to a specialist, in NYC, Dr. Mark Pecker (yes funny name!). He was very helpful and I saw him until I moved out of state. I would highly recommend him. He is at NY Presbyterian.
  12. Hi all, I am 34 and have been dealing with POTS for 8 years. I was doing pretty well for years but health started declining in October. I was on Short Term Disability for 3 weeks and expected to be back to work but that ran out and my doctor still couldn't get things under control. I was waiting on an appointment with Dr. Grubb but it was canceled due to his wife's illness and passing. Since I did not see Grubb my local cardiologist was the one that submitted records for my Long Term Disability, the problem is since October I have only been seen by him once. The day I saw him my BP and HR were both "normal", but I still felt terrible, was shaking, and could barely stand up. I do call his nurse every few days and check in with her, but I found out yesterday that my claim for Long Term Disability was denied. I am waiting for the letter with more details but the rep said my medical records did not show the need for me being out of work. I really wasn't surprised that my claim was denied, but I am still panicking! Luckily STD paid me 100% of my salary, but since that point I have missed 4 paychecks! I had money in savings to get by for the last 2 months but I was also, hoping that I would be approved and would be paid retroactively 60% of my salary. My job is no longer protected by FMLA and when I spoke to HR about whether I needed to be concerned about losing my job, I didn't get a real answer. I was told that once I have medical clearance to return to work, they will look at the needs of my team and determine if my position is needed. If it is not, they will work with me to try and find a similar position...it sounded like he was reading from a book of how to cover his butt legally, and did not seem too promising. So, I don't know if I will have a job when I am allowed to return to work. I am running out of money, and my LTD claim was denied. I have an appointment at Cleveland Clinic in a month, as well as an appointment with Dr. Grubb a few days after that. I am planning to appeal my LTD claim denial and was doing some research online regarding what I should include. Did anyone else appeal a LTD denial and have it approved? If so, do you have any suggestions or a version of the letter that you included with you supporting documents (doctors letters, articles, letters from family/friends etc). Thanks!
  13. Kelly, I don't know why but I just figured when my cardio said no, based on the explanation of why he said no, that it would be no across the board from all doctors. For some reason I didn't even consider that another doc would have a different view point. When I travel I drink as much as humanly possible and still need a day to recoup when I arrive and a day to recoup when I get home. What kind of doctor is it that you see for the iv infusions? Sounds like its worth it for me to do some research and push the issue! As far as stopping my period w birth control. I was on the pill that you only menstruate every 3 months and I saw an improvement but then I had issues with bleeding and clotting so they took me off birth control and no doctor will put me back on.
  14. I spoke to my cardio about doing this after a bad viral infection landed me in the ER and I was amazed at how close to "normal" I felt after 2 iv bags of saline. My cardio said no. He said that there is too much risk of infection, first because anytime a potsy is in the hospital there is a risk for infection. I asked if they could give me fluids at their office and he said no. I also asked about having a port put in to make iv treatments easier and he said that added to the risk of infection, every time they use the port and open and close that connection there is another risk for infection. He did say that it was very telling that I felt so much better from the saline. He said it doesn't mean that I am not drinking enough and need to hydrate more but that my body is not retaining the sodium that it needs to. I was on Florinef and salt tabs for years but weened off both about a year ago. He suggested that I start on Florinef again but I have yet to bc it made me gain weight and even though it sounds vain, feel better or feel like **** and be thinner...at this moment I choosing not to gain weight. Please let me know what your doc says. The week before my period every month is pure ****. Good luck
  15. Hi Hope, yes I take it. Dr. Grubb started me on it, probably close to 3 years ago. I see a definite difference with it. My brain fog was terrible, if I read something I saw the words but couldn't tell you what I just read and I would get my words all mixed up. For instance I would say a sentence but reverse 2 of the words so it made no sense... I did this all the time! I also feel like I would search for words a lot, be talking and say um, what's that word that means blah. Unfortunately my insurance does not cover this med and it is $100 a month but for me it is absolutely worth it.
  16. I took the prescription gelcaps for a few months, it was a once a week pill...after that my levels were tested and went up to a normal level so the doctor told me I was fine. A year later I went back and my level were even lower than the first time, I was prescribed the gelcaps again and along with that told to make over the counter vitamin D and K. I take the viactive chews, after a few days of taking them I got used to them and now I think they actually taste like chocolate. I am not sure what is caltrate is a pill or a chew but if you can tolerate them I recommend viactive.
  17. Feeling like Alice in Wonderland is a great way to explain it. I guess I am one of the lucky ones...at this point I am able to work full time and drive, I still have a lot of days that I am not up to driving, or working and still have episodes almost everyday. A little while ago I tried to walk the dog with my boyfriend. We didn't walk very far but I kept complaining of the heat, he insisted as usual it wasn't that hot, it was my body. It took about 25 minutes for me to make it back to my house, and we didn't even walk a full block. I made it back and collapsed on the couch, drank a gallon of water and some pretzels and now I am feeling a little better, like I am back inside my body. At work on Friday I went to a meeting that involved standing for an hour. I was not going to go, because I knew I couldn't stand up for that long but I didn't want to have to explain myself to everyone. I have a few co-workers who are aware of my medical issues so one of them stood next to me and kept finding places for me to at least lean against the wall. Well of course not even a quarter of the way into the meeting my heart was racing, I was drenched in sweat and having trouble breathing and my vision was blurry. My coworker saw that I was starting to go downhill and told me to get out of there asap and sit down. I snuck out the back got some ice water and sat down for a while. I eventually made it back to my desk and was wiped out, got a ride home from work and was asleep on the couch within minutes of getting home. All I kept thinking was, it's not fair...no one else has to worry about if they will be able to stay upright during this meeting. No one (other than the one coworker that I am so thankful for), has any idea that I am totally stressed and fighting my body to not faint. No one has any clue what I am going through! It's not fair, why do I have to have all this added stress and everyone else gets to stand up for an hour and not feel anything abnormal? It's kind of sad but sometimes I forget that things like standing or getting dressed in the morning doesn't affect everyone the way that it effects me.
  18. For a small female back in my college days I had quite a tolerance, at one point I could keep up with all of my male friends drink for drink...of course I stopped drinking like a fish after college and only drank occasionally. Once I was diagnosed with POTS I was told to stay away from alcohol so I didn't drink anything for 10 months...then one night I decided to try and sip and glass of wine and see what happened and I was ok and just felt like my usual POTSY self. I have been struggling with POTS for about 5 years now and at this point it is very rare that I have a drink. My tolerance is gone and now usually after a few sips I feel tipsy! I seem to be fine if I only have one drink and drink it very slowly, like one glass of wine throughout a nice meal but if I drink more than one I either blackout and the next day my memory of the previous night is pretty foggy or I wake up and feel like I have a combination of the worst hangover plus the flu and the worst POTS episode!!! I don't know if that is all just the reaction of POTS and alcohol or that in combination with all of my medications, but I assume the meds have some effect on it. For me it is not worth it to drink and feel like death or drink and black out so the majority of the time its water for me, and if I do have a drink a few times a year, it is a glass or wine or one beer and s-l-o-w-l-y and I chug water along with it.
  19. Hi Caterpilly, Unfortunately Dr. Pecker didn't offer any treatment solutions that I hadn't either tried or read about before but he took the time to try everything with me, and kept a very close eye on me and my case. In the beginning he did blood draws once a week and when I would see him would not just do the usual taking my bp and hr while I was upright and supine, we would actually go and walk up and down a few stairs and do other things so he could monitor exactly what my body was doing etc. He was much more hands on than my other doctors were and I felt like he was doing everything he could for me and looking beyond normal treatments and meds when something did not work, and there were some medications that he had tried with other patients that I had never heard of. I saw him on a very regular basis but as far as him being a primary care doctor, I was surprised to see that he is listed that way because as far as I knew he only treated autonomic dysfunction and hypertension. Since I saw him so often I would discuss other things with him as well but as far as if I had a cold or something I still had a primary care doctor that I saw for those kinds of things. I remember that any time I went to see him I was always the only younger patient and the majority of his patients were elderly so my guess is the base of his patients are hypertension and then he also sees his "special" autonomic dysfunction patients. Hope that helps and that he is as helpful for others as he was for me!
  20. Dr. Mark Pecker at Wells Cornell (which I always confused and I am not sure if it is part of Columbia Presbyterian). I found him after my electrophysioligist at LIJ hospital told me that he felt like he had run out of options to try with me and recommended I find a doctor with more experience. He was my specialist until I moved out of state and he was wonderful! I know for a while he was not taking new patients but that if you called and explained your case and that you have already been diagnosed with POTS/Dysautonomia that he would take you on as a patient. http://www.weillcornell.org/mspecker/ 212-746-2210
  21. The latest edition of our newsletter "Dysautonomia News" is new available at: http://dinet.org/newsletter.htm or you can also find it by going to our main DINET page and clicking on the "newsletters" tab on the left. Please make sure everyone takes the time to read this one, there is an important letter in there from DINET President, Michelle Sawicki. Enjoy!
  22. I take a medication called Cerefolin NAC for brain fog, it was prescribed to me by Dr. Grubb. It is a prescription strength of some combination of vitamins and it is a actually a drug used for Alzheimers patients. Unfortunately most insurance companies do not cover it, I did ask why but I can't remember and it is $60 a month, but I will say that I cannot function without it. It is a huge help! I do still get brain fog but not nearly as bad as I used to. In fact, my bf can tell if I haven't taken it because I am searching for words, screwing up words, just not really making sense when I speak without it. I cannot say enough good things about this medication and I have had no side effects. http://www.pamlab.com/Products,Cerefolin
  23. Flying is pretty rough for me, I have learned that hydration is the most important thing! I drink as much water as humanly possible for a few days before I fly, and I continue throughout my entire trip. It is a bit annoying because I have to go to the bathroom constantly (to the point that it is always a joke when we travel), but I have found that if I hydrate, hydrate, hydrate, I feel a lot better than if I don't. That being said, even with all of that water, I still do not feel anywhere near good when I fly. I always drink a ton before we get to the airport, and then once we go through security I usually chug at least 2 bottles of water... I seem to feel alright during take off and through out most of the flight, but generally once we are starting to descend a little I start to feel awful. I always have my BP/HR monitor with me, and my pressure drops big time, of course then I get all of the fun symptoms that come with that, dizzy ,lightheaded, nausea etc., and as soon as we land (and I wish I knew why!), I all the sudden feel like I am going to vomit immediately. Luckily I usually get off the plane quickly enough that I am ok and don't throw up but once I step off that plane I feel like I have been at battle for a few days. My body is completely exhausted and run down. I usually need to sleep the remainder of the day after arriving somewhere, and for 1-2 days after that it is pretty hit or miss, I can be ok, or I can have a major POTS episode and not be able to get out of bed. Also make sure to have pretzels or your salty snack of choice with you, if I start to feel really bad I suck on pretzels to get the salt in my body. I try to pad my timing on my trips, meaning...I try my best to have 1-3 days where if I feel like **** and need to sleep and rest and do nothing my plans are flexible enough that I am able to do that. I also do the same thing when I get home, I try to have a minimum of 1 day when I get back to recover from travel The few times that I haven't given myself at least a day I have ended up in bed for a week because of it. I guess the good and bad thing with this disease is that it seems to effect each one of us so differently, the last time I flew when we got to the airport for our flight home I was already not feeling well, and my bf and I discussed getting a wheel chair. I was being stubborn and decided I would be fine, well we got to the security line which was extremely long and I ended up needing to sit and shuffle up the line the whole time. I came very close to fainting at least 5 times while waiting for security and got really sick. SO, if your daughter is not feeling well, as much as I am sure she will not want to use a wheelchair, it is a HUGE help! I made myself a whole lot sicker than I needed to be and learned my lesson for next time. The longest flight I have taken since getting ill is 6 hours, we have discussed possibly going to Europe but I am so afraid that the longer the flight the longer my down time will be when we arrive. I guess if we decided to do it, I will have to figure in 3 days when we arrive to do nothing and rest and then 3 days once we get home... One last thing, it is really important that she remembers to stand up every so often or at least pumps her ankles while she is sitting to prevent all the blood from pooling in her legs! Good luck!!
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