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Everything posted by jrlehnardt

  1. What are the specific tests called that show if you have low blood volume?
  2. today i havent had a headache but i had iv fluids early this morning, so i am not sure if that helped or i am getting used to the midodrine. i will have to see how the next couple days go.
  3. I was recently dx with hyper pots and dr. goodman put me on propanolol 10mg 2x a day and midodrine 5mg 3x a day. I have now been on the propanolol for 2 weeks. It lowered my bp to consistently 90/60, and only lowered hr a tiny bit. Still have heart rate in mid 80s laying down and with standing in the 150s, if I excert any energy it will be above 160s. So it doesnt seem to help really. Than I started midodrine a week ago. I started with 1/2 a pill 2x a day, than went to a full pill twice a day and finally got to the dose he wanted me on which is a full pill 3x a day. I did that today. I hae had major headaches. It has help lift my bp to about 106/70. So pretty much text book normal, but I feel like crap. when I stand I see black for a couple seconds till my body adjusts, and i havent had this for a long time. Ever since keeping myself hydrated ompletely I havent had this. I am still keeping myself hydrated. And even though bp is normal I feel lightheaded and like i am not getting enough oxygen at times. I know these can be side effects that my body will get used too, I especially have goosebumps, but i can handle that, it is the headaches that are back like crazy and feeling worse than before I started all of this. I have eds as well and probaly have some type of mast cell reactions. my question is, what treatments have people found to work, when they are like me, with hyper pots, eds, mast cell and headaches??? I am going in tomorrow for iv fluids so that should help me feel a little better.
  4. jen, i just wanted to add my two cents when it comes to chiropractors, take it as you will. i have tried so many different treatments, eastern, western medicine and natural, homeopathic. i do find that chiro can help, if done properly. i have hyper pots, eds, factor v leiden, osteoarthritis, degenerative disk disease, fibrocystic breast disease, anemia, and the list goes on. anyway had major daily headaches for 6 years. i am now down to only headaches when it is from a side effect with a new medicine, lack of sleep, etc. but very far and in between. the biggest change was an amazing chiro, that found that my occiput was so far off. i started with seeing him 3x a week and even than that was not enough cause my neck would sublux a couple times a day. never thought i could ever get to a point where i would only see him weekly. and in fact i can go 3 weeks without seeing him now. it isnt all from chiro though, but it has been a combination of him and doing prolotherapy, which than keeps me in place longer. the only advice i have though is that i found that the regular adjustments would vause extra "trauma" even though it felt amazing and it was back in place, i would be in pain for days. after taking the suggestion in dr. tinkle eds book of usng the activator instead of manual adjustment. my chiro was willing to try. and even though i dont feel amazing when he gets it back in like i can feel with the manual adjustment. i notice within a couple hours my headavhe is mot getting worse and eventually it is gone i feel better and it stays in longer and there is no soft tissue trama. it was trial and error with us , but i can now go easily 2-3 weeks without seeing him and headaches are so far and inbetween. and the biggest thing is he saw on my first appointment what many doctors had missed for years that ,(and i dont remember all the terms) but at the base where the spine goes into the skull was twisted and and tilted to one side. i had seen spine specialists and physcal therapists, other chiros, neurologists and even did injections from the neurologist and it was the chiro doing adjustments with the activator and in combination with prolotherapy. best of luck. so glad you are headache free for once!
  5. thanks, yes i just went to the az mayo and unfortunately because we didnt have enough time i was unable to get some gastro testing done they wanted me to do. so i have to get them scheduled here in ga. but the gastro did think i probabnly had gastroparesis and overgrowth of bacteria in intestines, due to my symptoms and having pots and eds. but i will know for sure when i get my testing done.
  6. i think my potassium and sodium levels have always been on the low levels, still in normal range, but on the low side. i will have to check my old labs.
  7. thanks you guys are always so helpful. yes all my other labs were normal. except i was anemic too. i do have hyper pots and eds, and i have had my adrenal glands looked at for the tumor as my norepinephrine levels have been so high for so long, but nope, just my pots. i will look at the links. i have looked at addisons before but i didnt think it sounded like me too much, but who knows, lol
  8. recently i had labs done and my am cortisol levels were low (7-25) and i was at 5. i have looked online and cant find too much for low cortisol, it is mainly about high levels. my doctor said i need to do an adrenal stimulation test. but i was just wondering if anyone else has had low levels and what they mean?
  9. wow, i find this post very interesting because most of my "episodes" are gi related. i have different types of episodes, but the doctors have yet to figure out my gi ones. i actually just had one last night. i get abdominal pain, flushing, sweating, and than nausea and vomitting. sometimes i get another episode wher my tummy hurts, get flushing, sweating, extremely drenched hot sweat, and explosive greasy floating diarrhea,and i pass out during these ones. i have had endoscopy and colonoscopy and had a hida scan as during this i either get really bad pain where my kidneys are or my gallbladder. i have definitely realized that spinach gives me this reaction. which is high histamine, so i dont know if i have a mast cell thing or not, as we have not had it confirmed yet. but i also started having troule with dairy andwonder if it is gluten or maybe just histamine. who knows, i need to keep a food journal and try to figure it out.
  10. your symptoms sounds a lot like mine as well, and i have gone through the same testing. the thning that has helped me was taking an h1 and h2 together in the morning before breakfast and than again before dinner. when i go off them, within a day my headaches are awful and my nausea is back and i cant eat again. i just did a trial on my own, figured it wouldnt hurt to try and i am so happy i did. but you know your body better than anyone. but since the h1 and h2 work so well on me, my docs are suspecting mcas, which is common for eds and pots
  11. oh yes, they already have. i have just seen where the kids will take any change or situation the same way the parents react to it. every place we have been i have made sure i have found all the fun things to do in those areas and it has always worked. even now with my health situations my kids dont get to do soooo many things but we just do things differently and have learned not to take things for granted. like my kids get so excited if i am able to sit with them at the table for meals. or they love it when my hubby sets dinner up on our bed and all 7 of us eat dinner in bed with me. it is the little things to us that matter.
  12. sue1234- that is exactly how i have been, and i wondered why, with having so many ailments and struggles that pots brings about and eds and having a military hubby and having gone through a year deployment during my pots i have always kept happy and not been depressed. now dont get me wrong there has been a few times where all the stress, mainly from frustrations with doctors (lol) that i have needed a good cry and done it. but for the rest of the time i have always looked for the good in my life. i wondered if it was from my experience of being a military wife. i learned early on to make all of our moves an adventure for our children. and my children nevef looked at leaving their friends as a bad thing or during deployments i kept myself and the kids so busy that we didnt have time to be depressed. and the last 2 years of being in bed i have learned to find a new me, and not get depressed over not being able to do the things i used to do, or the things that i had before defined myself as a mom or a wife. . all of my doctors have been amazed with me not being depressed throughout all of this, but i have looked at it as someone else has it harder than i do
  13. interesting.... i have low cortisol levels. and i have hyper pots and high norepinephrine levels. so just the opposite of having high but i also have been putting on weight . i wonder what sll this could be?
  14. yes i have tried florinef before as well, but it did not help me at all. yes i definitely feel that my low blood volume has a lot to do with how i feel, and i have felt that way for years about low blood volume. what are the best things out there for it. my doctor mentioned infusion of red blood cells, and meds that help with volume expansio . but he didnt go more into it. do any of you know more about this, what type of meds, or is infusion safe and helpful? i remember months ago reading anout it, but cant find it now.
  15. yes, my pots symptoms get worse with the hot bsth, but it just warms up my freezing cold feet, ehich helps take care of that when that is really bothering me. i dont do it too often, but sometimes i do when i am completely bothered with how cold my feet are at that time.
  16. So far, I just started midodrine last night. I took half a pill instead and took it at 9pm. I woke up at midnight an my legs felt weird and i felt weird, but checked my bp and it was 90/56 almost the same as it is just on the propanolol. I was sooo tired but i didnt feel right and couldnt get back to sleep till 4am. I than took my morning dose at 9am, still only took a half of a pill, and i did ok, still no change on bp. I am suppose to be taking a full pill 3x a day but I want to wean myself on it just in case it is really bad on me. I do think my veins possibly need constricting because over the last few years, my legs will act up at night, like restless leg and they willl be cold and the only thing I have found to help is if I take a hot bath , (even though that makes my pots symtpoms worse, but it seems to help my legs not be so cold). Also my husband will squeeze my calves and feet when my legs feel weird so I hope that midodrine is one thing that helps.
  17. issie- thanks that does make sense. but so far, so good and i have been on it sinve the 18th. i am able to eat, not nauseous, and until today i havent had a headache. i did just start midodrine last night so i am not sure if that caused my headache? i am waiting patiently to see my results with propanolol, still not feeling too good, my bp has been low, but just started midodrine last night. heart rate lowered just a tiny bit, so we will see. still just letting my body get used to the new meds. last night was pretty bad with the tingling in my legs. not a surprise my d levels were low, dr.g said they were fine. but i have not seen sunlight in forever , but i have made a goal to get some, so hopefully that increases. richgotpots- thanks for explaining that. which meds raise adrenaline levels? well i am hoping that since the majority of pots patients dont have the hyper kind, that is ehy they didnt do well on propanolol and midodrine, and i hope it works for me. do we know what combination typically works for hyper pqtients with eds?
  18. thanks, everyone for your replies and input. i have read some on salt but i just looked back at more , i guess i missed while i was probably on my trip and recovering from the mayo trip. i have a lot of gastro problems so i am not able to do salt tabs either. i found the only way to get the 10g was to eat unhealthy and mostly restaurant foods, and i am not going to do that every meal every single day. i have had major bloating and weight gain since starting a year ago and many more tummy problems, here i was thinking my tummy probnlems are getting worse just with pots and eds and now i bet it all had to do with my salt intake. i am going to go down to 2-3 or even less and see how i feel.
  19. I really am not comfortable with salt loading. i have been doing it for almost a year started with 5 g now doctor wants me to do 10g as a minimum daily. i really dont notice too mmuch of a difference and i am so bloated and have more tummy problems with doing it. plus have put on so much weight from doing it. this cant be good for me. i just wonderis there something else i can do' instead?
  20. Here are my labs that I had done while there. Print Results Adrenal (05/18/2012 8:48 AM MST) Name Result Normal Range Norepinephrine, Supine 605.0 pg/mL 70 - 750 (Supine) Epinephrine, Supine 19.0 pg/mL See Comment Dopamine, Supine 16.0 pg/mL See Comment Norepinephrine, Standing 1923.0 pg/mL 200 - 1700 (Standing) Epinephrine, Standing 56.0 pg/mL See Comment Dopamine, Standing 28.0 pg/mL See Comment General Chemistry (05/16/2012 1:08 PM MST) Name Result Normal Range Ca 10.2 mg/dL 8.9 - 10.1 Phos 3.9 mg/dL 2.5 - 4.5 Creatinine 0.8 mg/dL 0.6 - 1.1 Parathyroid (05/16/2012 1:08 PM MST) Name Result Normal Range PTH Serum 25.4 pg/mL 15.0 - 65.0 General Chemistry (05/16/2012 1:08 PM MST) Name Result Normal Range Estimated GFR > 60 mL/min Special Chemistry (05/16/2012 1:08 PM MST) Name Result Normal Range Gastrin, Serum 25.0 pg/mL Immunology (05/16/2012 1:08 PM MST) Name Result Normal Range Tissue Transglut IgA Ab <1.2 U/mL <4.0 (Negative) Immunology (05/16/2012 1:08 PM MST) Name Result Normal Range Gliadin IgG <10.0 Units <20.0 (Negative) Gliadin IgA <10.0 Units <20.0 (Negative) Immunology (05/16/2012 1:08 PM MST) Name Result Normal Range Endomysial Negative Negative Tumor Markers (05/16/2012 1:08 PM MST) Name Result Normal Range VIP 51.0 pg/mL <75 Immunology (05/16/2012 12:35 PM MST) Name Result Normal Range Tissue Transglut IgG Ab 2.4 U/mL <6.0 (Negative) Timed Urine Chemistry (05/15/2012 11:36 AM MST) Name Result Normal Range U Na MML 152.0 mmol/24 hrs 41 - 227 U Na Conc 92.0 mmol/L U Na Duration 24.0 U Na Volume 1650.0 mL Timed Urine Chemistry (05/15/2012 11:36 AM MST) Name Result Normal Range U Creat Conc 63.0 mg/dL U N-Methylhist 89.0 mcg/g Cr 30 - 200 U N-Methylhist Duration 24 U N-Methylhist Volume 1650 mL Timed Urine Chemistry (05/15/2012 11:36 AM MST) Name Result Normal Range U Metaneph 87.0 mcg/24 h U Total Metaneph 486.0 mcg/24 h U Metaneph Volume 1650 mL U Metaneph Duration 24 U Normetaneph 399.0 mcg/24 h Endocrinology (05/15/2012 11:36 AM MST) Name Result Normal Range U BPG2 Conc 200.0 pg/mL U BPG2 330.0 ng/24h < or = 1000 U BPG2 Vol 24 U BPG2 Duration 1650 mL Differential (05/15/2012 10:17 AM MST) Name Result Normal Range Nucleated RBC 0.0 /100 WBC Blood Cell Count (05/15/2012 10:17 AM MST) Name Result Normal Range Hgb 12.3 g/dL 12.0 - 15.5 Hct 37.7 % 34.9 - 44.5 RBC 4.21 x10(12)/L 3.68 - 4.88 MCV 89.5 fL 82.7 - 96.8 RDW CV 12.2 % 11.9 - 15.5 WBC 4.7 x10(9)/L 3.4 - 10.6 Platelet Count 256.0 x10(9)/L 149 - 375 Differential (05/15/2012 10:17 AM MST) Name Result Normal Range Neutrophils Absolute 2.26 x10(9)/L 1.40 - 6.60 Lymphocytes Absolute 1.92 x10(9)/L 1.00 - 3.40 Monocytes Absolute 0.38 x10(9)/L 0.20 - 0.80 Eosinophils Absolute 0.1 x10(9)/L 0.00 - 0.40 Basophils Absolute 0.03 x10(9)/L 0.00 - 0.20 General Chemistry (05/15/2012 10:17 AM MST) Name Result Normal Range Creat-CT,IVP,MRI,Hem 0.7 mg/dL 0.6 - 1.1 General Chemistry (05/15/2012 10:17 AM MST) Name Result Normal Range Estimated GFR > 60 mL/min Enzymes (05/15/2012 10:17 AM MST) Name Result Normal Range ALT 15.0 u/l 7 - 45 Enzymes (05/15/2012 10:17 AM MST) Name Result Normal Range AST 16.0 u/l 8 - 43 General Chemistry (05/15/2012 10:17 AM MST) Name Result Normal Range Na 138.0 mmol/L 135 - 145 K 4.4 mmol/L 3.8 - 5.0 Cl 100.0 mmol/L 100 - 108 TCO2 28.0 mmol/L 22 - 29 Anion Gap 10.0 7 - 15 General Chemistry (05/15/2012 10:17 AM MST) Name Result Normal Range Glucose, Plasma/Serum 97.0 mg/dL 70 - 100 Glucose Studies (05/15/2012 10:17 AM MST) Name Result Normal Range A1C 5.4 % 4.7 - 5.8 Thyroid (05/15/2012 10:17 AM MST) Name Result Normal Range S-TSH 0.88 mIU/L 0.30 - 5.00 Special Hematology (05/15/2012 10:17 AM MST) Name Result Normal Range Folate >20.0 ug/L >=4.0 Special Hematology (05/15/2012 10:17 AM MST) Name Result Normal Range B12 925.0 ng/L 180 - 914 Special Hematology (05/15/2012 10:17 AM MST) Name Result Normal Range Ferritin 42.0 mcg/L 11 - 307 Special Chemistry (05/15/2012 10:17 AM MST) Name Result Normal Range Cort AM 5.2 mcg/dL 7.0 - 25.0 Immunology (05/15/2012 10:17 AM MST) Name Result Normal Range AutoAbs to Proteinase 3 <0.2 Units <0.4 (Negative) Myeloperoxidase Ab,IgG <0.2 Units <0.4 (Negative) Enzymes (05/15/2012 10:17 AM MST) Name Result Normal Range ACE 19.0 u/l 8 - 53 Immunology (05/15/2012 10:17 AM MST) Name Result Normal Range Tissue Transglut IgA Ab <1.2 U/mL <4.0 (Negative) Immunology (05/15/2012 10:17 AM MST) Name Result Normal Range Gliadin IgG <10.0 Units <20.0 (Negative) Gliadin IgA <10.0 Units <20.0 (Negative) Immunology (05/15/2012 10:17 AM MST) Name Result Normal Range ANA 0.2 Units <1.1 Immunology (05/15/2012 10:17 AM MST) Name Result Normal Range ENA Scrn 3.0 1 - 19 Special Chemistry (05/15/2012 10:17 AM MST) Name Result Normal Range Tryptase 2.2 ng/mL <11.5 Special Chemistry (05/15/2012 10:17 AM MST) Name Result Normal Range 25-H D2 <4.0 ng/mL 25-H D3 31.0 ng/mL 25-Hydroxy D Total 31.0 ng/mL Endocrinology (05/15/2012 10:17 AM MST) Name Result Normal Range Normetaneph Free 0.74 nmol/L <0.90 Metaneph Free 0.21 nmol/L <0.50 Special Hematology (05/15/2012 10:17 AM MST) Name Result Normal Range MMA Serum 0.08 nmol/mL <=0.40 Immunology (05/15/2012 10:17 AM MST) Name Result Normal Range GAD65 Ab 0.0 nmol/L <= 0.02 Immunology (05/15/2012 10:17 AM MST) Name Result Normal Range N-Type Calcium Channel Ab S 0.0 nmol/L <=0.03 P/Q-Type Calcium Channel Ab S 0.0 nmol/L <=0.02 AChR Muscle Bind Ab 0.0 nmol/L <=0.02 AChR Ganglionic Neuronal Ab, S 0.0 nmol/L <=0.02 Neuroimmunology Interp See Comment ANNA-1 Serum Negative Titer <1:240 ANNA-2 Serum Negative Titer <1:240 ANNA-3, Serum Negative Titer <1:240 AGNA-1, Serum Negative Titer <1:240 PCA-1, Serum Negative Titer <1:240 PCA-2, Serum Negative Titer <1:240 PCA-Tr, S Negative Titer <1:240 Amphiphysin, S Negative Titer <1:240 CRMP-5, Serum Negative Titer Striat Muscle Ab Negative Titer <1:60 Neuronal (V-G) K+ Channel Ab 0.0 nmol/L <=0.02 Special Hematology (05/15/2012 10:16 AM MST) Name Result Normal Range Sed Rate 10.0 mm/1 h 0 - 29
  21. RichgotPots- what do you mean by, he doesnt address it better about catecholamines? As for low blood volume, that is a question I have as well. I am planning on calling today and asking if there was a test that I had that shows that, and if not what is the test that will check on that? I dont really know much about the difference of beta blockers, what does it mean when you say that propanolol is sympatholytic ? is this good or bad? I have wondered the same thing with loweing my bp, and since I have been on it my bp has been 90/60 conistently. I know it isnt too low but I feel awful, I will wait longer as they said wait 1-2 weeks for my body to adjust to it. He did say to add midodrine, doesnt this help increase bp, s maybe that will level me out. I am picking up the rx today. Issie- He didnt mention that at all. He just preferred I take it over benadryl as , benadryl was more drowsy and in turn he thought my brain fog would not be as bad if I switched. which that has improved. My only thing is on the mast cell forum, some have mentioned that they like to save the bendaryl drugs as a rescue med and not use as a daily med. And they are on zyrtec, allegra and zantac. I wonder if I would be better on this combo? I did try zyrtec before and didnt like how I felt, but that wasnt in the combination of all of them.
  22. mwise- thanks yes i have been eating small meals and limit fat mostly except when i give in because i just really want something, lol. i wasnt able to do the emptying study but they want me to have it donr, and they recommeneded i go to a gastroparesis nutrition class. i still dont know for sure but we will see.
  23. I hate bananas- He said alot , I am not sure if he said anything about the high bp and midodrine. He did talk about the beta blocker regulating it, and that midodrine becasue I have eds would probably help. I know everything is just a trial so we will see how it works for me. He didnt say young eds will recover 100% but they are more likely too. So he was pointing out the things against me and the things for me. Everyone is individual, so only time will tell. he did think that my eds is a big culprit to getting pots. He said that with pots even with all the years of dotors learning about it, we still know so little, especially the hyper kind. He did say that it seems to look like pots is from auto immune. Thanks I hope I explained it better. Nowwhat!- He actually called it joint hypemobility during my first visit and than during my follow up and in his dictations calls it eds. I was dx back at home by my rheumatologist that also has eds himself. I was the one that used the term "brain fog", so I dont know what he calls it or what. I dont know that it really matters? I do know that there is so little everyone knows about pots and that doctors agree on some things and on others they dont. For example Dr. scales doesnt necessarily agree with dr. levine exercise protocol. he agrees with part of it but not all of it. Mainly not starting s agressively. Yes I understand trying to put on and off compression stockings. I do wear silver ring splints and that has made a huge impact in my joint hypermobility in my hands. Not really sure exactlywhat he meant by the worst tachycardic, not sure if it was that my hr doesnt go below 100 really even when sleeping, or if it is because it immediately rises with standing in the first 30sec, or if it is because it gets up to 200 if I start walking consistently, or if it is because of how many years it has been doing all of it. I am thinking maybe the combination of it all. Hope I explained it, if not just let me know. doozlygirl- Yes, it was awful to stop but it was only nausea,headaches and being full, oh and I started getting sensitive to smells again. I did have one bad episoe on wednesdayy night but I am pretty sure it was a gallblader attack, as I just had forzen yogurt thinking that would be ok since it wasnt ice cream,as I havent been able to have ice cream for years and I have been craving tcby for 4 years and have never been by one,lol. well about 20-30 after I got major back and stomach pain where my gallbladder was, and major facial sweating and lightheadedness and when we decided I should go to the er, it ended before we got there,lol. Only lasted 30 mins total. I have had this before and my doctors have been looking into this. Yes, dr. lewis and dr. g still think i could easily have a mast cell activation disorder, but they know I dont have mastocytosis. I do live in georgia near only 3 hours away from dr afrin, but I dont know how well my insurance would be about seeing him since they just pai for a major trip. But dr. lewis did bring up maybe the pathologist? could look at my old biopsies from my endoscopy if they still have it and do the right stain on it too check for mast cells. Dr. g did mention that if I do have a mast cell thing that the beta blocker may not work for me. with being on an h1 and h2 would that help me be able to tolerate the beta blocker better?? so I could still takeit, as it is his first choice for hyper patients? I have checked out that forum, I just havent spent too much time on it yet. I feel like I dont have as many problems that are talked about but yet the h1 and h2 help me so much. And I have a daughter that has had problems that I wonder if it is all mast cell for her. issie- yes he did mention guifacine too. So far I have been on the propanolol for almost 3 days. I have been extremely tired. It has lowered my bp to 80/60s and lowered my hr just a little, not much at all. Byt it was about the 4th day last time that I didnt do well, so we will see. I actually never got it printed out to bring to him before I left, and it was just too much on me to try to get it printed at the hotel. And I never made it over to the arizona doppler as the mayo had me doing stuff and than I was too wiped out to go. So I figure I will work on my labs and tests I need to do here and than maybe at a later time go and see them to look for ccsvi. I definitely would be interested too, if anyone does see dr. g and gives it to him and what his thoughts are on it. I am sorry I wasnt able too.
  24. First I will start off by saying that the travel and testing was much harder on my body than I expected. I mean I did expect to not feel well and that it would be difficult on me but I am still recovering and really I have just started to get an hour or two of energy a day just 2 days ago. I was however lucky to have my sister travel with me. I dont know how I would have done this trip on my own. She did all the driving for me, which was a huge help when it came to going off the campus to get food. My sister traveled from Missouri to Georgia where I lived on May 12th and than we flew out of Atlanta on the 13th. I live 2 hours away from Atlanta, so already the 2 hour drive made my muscles spasm pretty bad as I have EDS and I have not been in a long car trip over 30 mins in almost 2 years. My family doctor had me come in the Friday before to get IV fluids since I would be travelling, so I think it probably would have been worse without that. On the flight I was extremely nauseous and had a major headache. I had taken 2 zofran and than a phenergan, also 2 vicodin for the headache. I did not get much relief at all. I think all of this was this bad as I had stopped taking H1 and H2 blocker (Benadryl and Zantac) before my trip to make sure I got accurate labs for any of the testing for mast cells. Because within 30 mins of being able to start taking them again the headaches and nausea were gone and the flight home was nothing like the flight out there. MONDAY 14th-I started my week with an appointment with Dr. Goodman at 8am on Monday 14th. I had already done my registration over the phone and online so I did not need to be there at 7am, which was a help. I had had a nightmare the night before that Dr. Goodman did not want to listen to me longer than 5 mins, and even though I knew it wasnt going to be like that, I was still nervous as to how good it was going to be. He started off by asking me to share what was wrong with me and he took notes and asked me to explain further on some things. By the time we were done with that he said he wanted to look at my records as all of them had not made it to him, so I brought my last year of records. (My hubby is military and they are not too good at sending medical records, in fact my records from Fort Lewis Washington still have not made it to the post I have been at for over a year,lol). Just my last year is a full 4 inch bider, packed full. So he tooked my notebook and I just waited. He returned about 30 mins later with his plan. He ordered many labs, ARS, echo, ekg, he wanted me to see Dr. Lewis the immunologist, he wanted me to see the cardio electrophysicist, and he wanted me to see a gastroenterologist. I was so excited he had been very thorough, and he was having me see everyone I was hoping to see. I spent the rest of Monday dealing with insurance as I knew I would be. I have military insurance and the only way this was going to be covered was after dr. g put in all the orders, my family doctor back in Georgia had to do the same and than the supervisor that approved it would have to do so. So the mayo couldnt book me for any appts till insurance approved it. Well labs did not need prior approval and I had already gotten prior approval befor coming out for the ARS. SO after talking with my dr.s nurse and she had been working on it with insurance, nothing had been approved when Monday was done. So I was a little worried. TUESDAY 15th- So I started Tuesday early at 8am with doing the ARS. I wasnt sure if I would be able to do labs and if so if some of them were fasting , so I didnt eat or drink. Which was a good thing as I did need to fast. Being off of meds and fasting, is what made the trip the worst. I was so nauteous, really couldnt eat or drink and had a headache constantly. So I did the ARS, which the lady was very nice,a nd it went by pretty fast, I was just not feeling well. The first part was where she checked checked my sweat, and that wasnt bad. And the next two parts were breathing, which wow, I did not like as I felt like I would pass out, but I didnt. And than there was the tilt. Not bad as I have done the 45min one and this was only 10 mins. And I am not one that passes out. ( Have only done so before my dx and I was really dehydrated and with a specific gastro problem I have). Than I went and waited to find out about insurance. Yeah everything was approved!!! So I went down and did labs. She took I believe 9 vials and than sent me back with a 24 hr urine container. These I do not like as you to be attached to ur bathroom at all times. So I was glad to get it done and over with. I wasnt sure when to do it as some of my appts had me at the Phoenix campus and I didnt want to be far away from it in my hotel room in the fridge. Most of my extra time was spent laying in the hotel room, due to nausea and headaches. Kind of boring, i know. So I was tired and weak after the labs and the ARS, and I was doing the 24 hr urine all day. WEDNESDAY 16th- Well this day was my latest morning start, which I loved cause I got 8 hrs of sleep. All the other nights I maybe got 3 hours as I dont sleep well at all. I had an appt scheduled with Dr. Lewis' resident dr. kidd. and this was at 10am and my 24 hr urine was supposed to be done at 1130am. So i thought I would be done with my appt in enough time to get back to the hotel and finish and turn it in. Well I met with the resident which wa very thorough and I was able to tlk to him about pots and mast cells and all my sensitivities. He scratched on my skin and than left to talk with dr. lewis. they were gone about 30mins. Than they both came in and dr. lewis talked with me a lot about it and he scratched on my skin. He looked at the labs dr. g had ordered and was happy that he had ordered most of them. Dr. lewis added a few more.. Well I had to have blood drawn again as some of the tests he had ordered needed to be refridgerated and all the other vials I did werent. So I had 5 more vials added. He also added something to my 24 hr urine. Well by the time all this was done I had to have my sister bring my 24 hr urine container from the airport so I could drop it off. And than I ate lunch there and than went straight for my echo. This took extra long as well as my heart isnt positioned the best way so I am "technically very difficult" to scan. I knew this prior because all my other echoes have been incomplete due to this. But they were able to get everything and my heart was fine, just have tachycardia. THURSDAY 17th- I started early at the Phoenix campus. So I had to be on the first shuttle over there which is early, especially when I only had 3 hours of sleep and am hungry, nauseous and have a major headache. I had to still wait to see gastro before I could restart my meds and they werent sure that would happen this week. I had an ekg one and than I saw Dr. shen. who was amazing, I love that all theses doctors know what pots is, and how there field is affected by it. So he actually thought this appt was kind of pointless as he thought dr. g was amazing at putting all the pieces together and would do what was best for me. But he did want me to try to get into a cardio pulmonary rehab doctor since I have become deconditioned with me being in bed the last year and a half. (I have had pots for 6 years, dx a year ago and have been in bed for the last 1.5yrs.) Well they were able to get me in right away, but it was at the scottsdale campus, so I had to get on the shuttle and do that fast. I met with dr. scales and what was supposed to be an hour was 2 hours with him. He missed his lunch and so did I. ut it was really great as he explained so many things to me, and he set up ways to recondition my heart. But what I learned most was the bad affect trying to push to exercise aggresively instead of gradually and being patient and build up. he explained the capillaries had shut down, due to me being in bed for so long. and he said that capillaries are like small side roads and veins are like the main highways. he said that me jumping into and aggressivley trying to workout, the body/brain is trying to push blood to the capillaries that are shut down , so really they just beome swollen, and hurt me and not help. But if I try to gradually and slowly start woring out and increase for 6 weeks that the capillaries will open again and it will help me. After 6 weeks he said I could be aggressive. Which for me this was important to know, as I am stubborn, had been very athletic (woeking out 2hrs a day 6 days a week only 2 years ago, pushing through all my pots problems). So with being stuck in be I was tired of it and had been trying to push myself to workout and was being agressive and would do bodyrock (very fast and aggressive) and than I woul do this for a day or 2 and would put myself back in bed for a week. Dr. scales is going to work with me through the internet on this. I than met with the gastro doctor. This is only my personal opinion. If he was the only doctor I came to see, I would not have been happy. He was good and everything but out of all of my appts, this was the one that I felt lacked. He even had my information up as the wrong patient, so when he ordered tests for me and wrote me a rx, they could not find it, until we realized he had put it all under someone else. So this may have been why it wasnt as helpful to me, maybe he was looking at the wrong information, and it wouldnt make sense with what I was saying. ANyway he did think with my symptoms I probably had gastroparesis also probably due to me having eds and pots. he also thought I had an overgrowth of bacteria in my intestines. He wrote me a script for this and is interested how i do with it and if things get better than they will eventually come back and I will have to do another round of it and would always have to do this. he wanted me to do some tests to check my intestines and colon gastric emptying series but we werent able to get it done while there, so that is something I will do here. I mentione my gallbladder being in the wrong place and being hypr active on the hida scan and he didnt even say anything at all. So I will be meeting with a gastro here i georgia to get all this fgured out, and dr. g agrees that I need to get the gastro things figured out as they are causing many problems. So this ws the last appt. that I needed to be off my meds for, so I was able to start my benadryl and zantac and it was amazing how the headaches and nausea went away and I was able to eat. So the rest of the trip I felt my "normal" pots self. FRIDAY- 18th- So I started with the enocrine catecholamine test where I lay down in a dark room for 30mins and they draw blood and than I stand for 10mins and they draw blood. I dont know if it was becasue I was taking my benadryl and zantac or what but this was the easiest test and I actually fell asleep during it. Than I actually went back to the hotel and swam for the first time and ate and was able to enjoy my day and food. Still not like a normal person but it was a very big change from all the other days. Than I met with Dr. G at the end of his day at 4pm. He went over all my labs and results from my tests and reviewed what all the other doctors had said and this was what he said. ----- He said I was still in the normal range but low for being anemic and just going up one number would helpe me feel a lot better compared to how I feel now. (I have been off and on anemic throughout my life and one of the times they looked more into it, and said it wasnt because I was low on iron but it was the actually shape of my blood cells were too plump, and they were suppose to look into mre , but havent. So I do need to have this looked at here in Georgia) . He said I had low blood volume and if I was going to be there at the mayo longer that he would have me do an infusion of red blood cells to help boost me. He also said that being on a medicine that would expand blood would be beneficial. He said I had low morning cortisol and that I would have to have an adrenal stimulation test done here to check on this. All my other labs came back fine. He said I have Hyper adrenergic Pots from the blood labs. That my catecholamine level was in the 600s laying down (normal) and than well over 1700 s standing. He said that not to be pesimistic but since I have eds, that is not going for me (when it comes to recovering from pots completely), he also said that because I am 32 and even though that is young it isnt young for pots and if I would have gotten it in my teens, I would have a better chance of getting over it. but he said I did have one thing going for me, since my pots came on suddenly after a surgery. So we will see. He recommended I elevate head of bed 4-6inches, wear compression stockings (which I am not so sure about as I dont have low bp all the time), but he said it should help because I have eds. He wants me to drink 2.5 liters of fluid, 1/2 of which is electrolytes (i have been doing this for 6 months already). He said I should get 10g of salt as a minimum daily. He recommended nuun tablets as salt tablets are something I cant handle with my gastro problems. I have to work on my cardiovascular exercises from dr. scales and I need to work on leg strengthening exerises gradually. He recommended I switch from benadryl to cyproheptadine immediately. which had really helped with my brain fog not being so bad. But it still helpes me from being nauseous and being able to eat a full meal and not having headaches. Dr. G really didnt know why benadryl and zantac and now cyproheptadine it has really been helping me. he does think there is some mast cell thing going on but my labs for mastocytosis have all cam back normal my tryptase was at 2.2 still in normal range. So I dont know, and dr. g didnt know and dr. lewis doesnt understand it and the gastro dr. didnt understand it, but it works for me, so they said to keep doing it. He wants me to do propanolol 10mg (which I had tried a year ago but the doctor than put me on 60mg!!!! to start, no wonder I wound up in the hospital, but that doctor was just trying his hardest to get my hr down). But he said that with now salt loading I should do good on it. He said that it should help get my heart rate down, which is his biggest concern for me as he said my tachycardia is the worst he has ever seen. So he said he needs to get my heart rate down and that although there is no evidence that having pots shortens our lifespan, that having my heart work triple time for so long, can not be good for it. He also wants to regulate my bp, and that the propanolol should do this, as my bp is high, normal and low, lol. He said I should do midodrine, due to having eds. If these dont work than the next would be to try clonidine and flutocortisone. So this was it. I know it is long, but there are so many details left out, so if you have any questions, just ask. I will probably will actually post what labs he ordered so that may be helpful for any of you, and I may just post my doctors dictations of my appts so you can see. But I do have to say I am so grateful that I was able to go to the mayo. These doctors are very smart and understand pots and that was a great experience. I feel like with these answers and a plan I can finally get out of this relapse that has last a year and a half. Oh ya Dr. G did say that he thougt I could be 25% better at 3 months and at 6months be 50-75% better. I know I will never be 100% but 50-75 is a lot better than I am now and I will take it. Thanks for this forum and all of your guys input because it is through this forum that I learned about dr. g and about h1 h2 blocker that helps me greatly.
  25. No, I am actually working on it now. Takes me awhile, lol, as I have vision problems when it comes to looking at the computer, so I take frequent breaks.
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