jenglynn

When I was initially diagnosed with POTS back in July, I didn't have symptoms sitting, only standing. But mine progressed and by October I was having orthostatic hypotension and tachycardia by sitting upright. So there is a big difference been my lying down numbers, sitting numbers and standing numbers. Usually my BP will drop 20-40 points with each change of position and about 50-100 bpm in HR between the 3. I will usually get other symptoms while sitting upright as well... dizziness, vision issues (mainly blurry), ears ringing etc. but I do not recall ever having syncope while sitting upright. One of the doctors told me at Mayo that as he sat me up in the morning I had a syncope spell but I don't really remember. I just pray it doesn't continue to progress any further. I also feel awful if I am sitting for a longer period of time than usual. I had to be in a wheelchair for several hours for a consult and a 3 hour car ride and I was miserable by the time I got home. The fatigue was so severe. I am guessing because my heart was just beating like crazy the whole time and worn out. I have never changed my diet so in my situation it was just a matter of the progression. I hardly eat a thing as it is. I hope that this phase passes for you, and soon as well. It is miserable when you can't even gain relief when you sit down. We can't spend all of our lives in bed. Even though at times it seems as if it is the only option.

Bren, THANK YOU for your perspective. Sometimes I think about that... it isn't going to kill me. I think of people with cancer or other illnesses and feel guilt to complain at all. But at least with THOSE diseases people understand (not that I am comparing my illness to cancer) but so many people just don't get it. And one of my pet peeves is when people tell me how "much better" I look.... when I feel just awful. It has been a long time since I have looked even halfway decent but when someone sees me and they think that I look even a little bit better they are suggesting that I must be better and "cured." My stages right now seem to go between denial, anger, depression, guilt and then happy thoughts and lots of blessing counting. I think that the attitude adjustment is a daily battle and now that I am aware of it I can control it better. And I have a long way to go before I can trust my body again. How can I? I never know if I stand up if I will stay conscious or not. Thanks again!!! I am glad that I am not alone.

I have a touchy subject to bring up... and I REALLY want to apologize in advance if I offend any of you by bringing this up at all. I know there are many of us on this forum who have lost family members close to us (myself included) and most of us know about the 5 stages of grief. I am not at all trying to compare my illness, or anyone else's to the tragedy of a death, so I just wanted to express that first. I guess prior to this thought, I had never really thought of grieving in really any other way. That said, I was visited by a counselor in Mayo who discussed this with me and I wondered if any of you felt the same. He said, that when we are first diagnosed with a chronic illness or illnesses in my case that will most likely be with you for the rest of your life, grief is a natural feeling. Realizing that life would never be exactly the same is a hard reality. He asked me a lot about my "old" life. Well.. I am married to a husband I love. I have 6 children, 4 of them involved in time consuming sports (2 boys in hockey). I was a Girl Scout Leader. I was a CASA (court appointed special advocate- meaning that when a child is placed in CPS I become their "voice" in court to try to decide best ultimate placement which involves weekly visits with the child, family (foster or natural), and communication with teachers, etc- so quite a commitment). I am a full time grad school student (I am still doing that because I am in an online program and I've struggled in the last month or two as my illness has progressed but I am still hanging in there). Plus church and teaching a Marriage Enrichment course... I was a busy girl... Well.... this began in April and by the time Sept. was here I was in a downhill spiral that I couldn't control any more. Couldn't work. By November I had to give up everything and was bed ridden most of the time. My syncope was constant and I was so unstable. So on to grief...have any of you gone through that? Denial, anger, bargaining, depression and then acceptance. I find myself going through this- not as a seamless transition from one to the next but back and forth and sometimes feeling more than one at a time. I feel like I am "grieving" my formal self. I am having a hard time not denying that this is happened to me. I am struggling with anger. I feel depressed at time. The therapist told me that it was natural to feel like this but I wasn't even prepared to come to terms with the diagnosis that I hadn't even really received yet- let alone ready to start "healing". He also said another thing that has stuck with me.... He said that I had lost complete trust and faith in my body and that I felt betrayed by it. I had never thought of it in those terms before but I realized that he was right. I did feel like I didn't trust my body and all and maybe a little betrayed. I have always taken care of myself. No drugs, smoking, drinking... stayed in shape... and all of a sudden my whole life has changed. Sometimes I am in denial and other times I am angry.. and sometimes I am depressed. I KNOW I need to move past this to heal and make terms with my new life and make the adaptions that I need to make my life my own again. I just wondered if anyone feels this way or HAS felt this way and how they moved beyond it. I have basically been in the hospital from Thanksgiving until New Years Eve and now that I am home it is an adjustment. I know it takes time and that I need to give that to myself and my family. I try to so hard at times to count my blessings and keep thoughts positives but there are moments that I just break into my pity party. I guess tonight is one of those nights. Thanks anyone if you have any insight how you have started your lives over. Jen

I do know that I will have assistance from my LTD company in filing for SSDI. As mentioned before, it is definitely in their best interest if I get approved. So I am not sure if it is necessary for me to hire a lawyer at this time. I guess I will finish applying and then see what happens. From my basic calculations, it appears that the amount of money will not be changed by more than $200 a month if I were to get approved only because I believe that SSDI pays for dependent children but there is a max payout that is not much less than my LTD monthly amount. Like many of you have said, how could most of us actually work with these conditions? Not only completing the actual work once we arrived at work but the whole process of actually arriving there? I can't drive. Taking a shower is a two hour process by the time I have recovered. Even sitting upright I have tachycardia and standing it is to the point where I can hardly breathe. Every time I stand I never know how long it will be until I have pre-syncope or syncope. After six concussions, I am terrified of having another. After my last one (day before Thanksgiving) I have noticed a significant change in my cognitive abilities. It doesn't help that my fifth concussion had occurred 10 days before. Both included major head lacerations with staples. I would MUCH rather be healthy and be able to go to work and take care of my family instead of the other way around. But with my defective immune system and not even knowing the nature of that yet plus the autonomic dysfunction neuropathy, post concussion syndrome along with the 10 plus more DX that may or may not be related.... I don't see how I could possibly hold down ANY job, even part time when I am bed ridden most the time. It is going to take months to get myself back to where I was before IF I ever do get there... and these illnesses aren't going anywhere. It is just frustrated to be dealing with all of this paperwork. I guess mainly because it just makes it all so real to me.

As terrible as it is, maybe the "severity" of my case according to the doctors and the extreme multiple syncope episodes resulting in so many concussions may work to my advantage I suppose as far as applying for disability. I hate to look at it that way but as hard as I am fighting this disease, trying to fight a government agency sounds just exhausting.

Thank you everyone!! I guess it does seem a little bit daunting at first... but I just started the process and it was not so bad... I am applying online. I got to the part about all of the doctors visits and I became pretty overwhelmed. Every appointment... with EVERY doctor and EVERY lab or test that has been ordered???? All of those dates? I spend more time at my clinic, hospital or with my doctors than with my family it seems. I have NO clue how to fill that out. Wouldn't the medical records just suffice???? Thankful, thank you for your advice. When I got my approval letter from LTD, they did say that an SSDI rep would be contacting me but I haven't heard anything yet. Maybe I will just call and see if I can get the ball rolling a little faster and if I had some help, all the better.

I actually thought (silly me) that there was a pretty clear connection acknowledged by doctors about the occurance of POTS patients and hypermobility/ EDS or whatever it is. But when I brought it up to doctor after doctor (and this is at Mayo in Rochester where I thought they would have an understanding) I was completely dismissed. They diagnosed me with hypermobility and hyperextendable joints but would not pursue the EDS dx. The genetic counselor said in her report "The patient presents many signs of EDS but I caution again labeling a patient with her severe and chronic autonomic issues with EDS and seriously advise other avenues be pursued to determine the cause of her illnesses." So apparently the doctors at Mayo do not believe in that connection. The genetic counselor really did not have anything other to add besides I have an autoimmune disorder due to family history but at this point it has not been pin pointed as to which one it is. Guess it is just a waiting game at this time...

After almost a month in the hospital I am back at home but still pretty much debilitated. I do have a wheelchair and walker with seat/wheels now to help my "mobility". My diagnosis list is pretty long: Autonomic Dysfunction Neuropathy (possibly autoimmune), Undefined at this time auto immune disorder (waiting for labs to come back to determine if it can be identified), Post concussive syndrome (I have had 6 concussions),Migraines and Cluster Headache Disorder, Fibromyalgia, P.O.T.S (although I am not sure that they still keep POTS on the list with the Autonomic Dys. DX, Hypermobility and Hyperextendable joints, Hyperthyroid, Chronic Fatigue... I know there are more but can't think of them right now. I was approved very quickly from my employer's Long Term Disability company for 2 years of disability. I just received a letter indicating that in my case I HAVE to apply for SSI. I guess they have that right if they think there is a reasonable chance that I could be approved. So, in order to keep my LTD benefits I have to go through the whole SSI process which I was dreading. I know there is no way of knowing, but do you think I have ANY chance of being approved by Social Security? I began the application and it is such a process that it was exhausting to even begin. I hate to be so negative but after the stories I have heard on this forum and from others, the odds are almost zero that I will get approved. And I am wondering if anything would happen to my LTD benefits if I am denied by SSI. At this point, there is NO way I can return to work. I can hardly stand for more more than 2 minutes at a time and my sitting is very limited as well. I am tryng to vary my positions more and more now that I am home from the hospital but sitting up is difficult and exhausting for me. Walking is pretty much impossible. After a few steps I am so dizzy and my HR so high (at least over 180)... Same with standing but I have to be so careful with syncope. The thought of trying to work at this point is impossible but if I am not approved benefits I don't know how we would survive. I guess I know it isn't a matter of IF I am denied, but WHEN. It doesn't sound like anyone was ever approved the first time. I am just hoping I get to keep my work LTD benefits in the meantime. Advice for filling out that initial application would be helpful. I know that I have doctors who would write letters for me. Is there a place for me to write about activities that are impossible for me? It is so hard when the people who make these decisions know so very little about our illness. I am in Wisconsin if that makes any difference. Thanks! Jen

The frustrating part about this whole thing??? After I got the good news about the massive increase in my ferritin levels... like I said.. with supplements for years never above 8-12 ever. BUT... NOW I am "technically" considered anemic because my hemoglobin has dropped to anemia levels and my hematocrit also dropped as well to well below normal. So even though my iron stores are so much better now I am technically anemic according to my hemoglobin which went from 13.8 to below 10 now. I am just confused. I can't say I notice a difference in autonomic symptoms... HR and BP symptoms still the same. The ONLY thing that has somewhat improved is that I think my syncope is less because one of the things I learned is to start recognizing my early syncope symptoms earlier if I can... I don't always have warning but I did learn that I have early symptoms that are very subtle at times that I never noticed before. So now I am able to get down sooner to either prevent syncope OR be on the ground when it occurs. I am just confused at what to expect by these IVIG treatments. I wish I was one who could sail through them without issue... but I do get quite sick. Migraine headache and the day of the treatment I feel like I have the flu. I can't move at all because my whole body hurts with body aches and chills. The day after I am miserable. Sick... When I sat up the next morning the whole room was spinning and I had no vision, no hearing... low BP and high, high HR. Over 180. This has happened every time after the last four treatments I've had. Even being pre treated but they do not treat me with steroids. Only Benadryl and Tylenol. The spinning, headache and vision and hearing problems go on all day... if I keep my head back against a pillow, reclined, I am okay. But any movement then I am in misery. We even have tried another brand to no success. I also have hives and bumps all over me ever since I began the treatment. I've called my doctor and he said these are all normal side effects and he feels that the small potential benefit is worth the risk and discomfort. So I just keep telling myself... 10 weeks to go Thanks for your support and keep your ideas coming if you have any others.... I have seen a lot of changes in my body but I am not sure how to interpret them. The massive outbreak of cold sores was concerning but they immediately put me on an anti viral drug that helped to prevent them from spreading and that has worked so far. They never spread beyond my lower lips. So I will be on a preventive dose throughout the rest of the treatment. Another kind of unrelated question.... I met with a genetic counselor and I brought up my rather extreme hypermobility and hyperextendable joints (actually, both now listed on my DX list) and the genetic doctor said that I met the criteria for a form of Ehlers Danlos (I have a 13 year old daughter with the same joints and mobility and has already had several syncope spells) but she said that didn't want to "label" me with Ehlers Danlos because it has nothing to do with autonomic dysfunction. She said it was not all that uncommon for women to be hypermobile, have hyper joints, multiple dislocations, and the soft and stretchy skin I have... The only criteria I didn't meet in her mind was that my scars didn't appear typical. There were only a few that had that very thin skin layer but the rest seemed okay. It seems that there are many on this forum who have both and I have SUCH a hard time believing that these symptoms are not connected. My 13 and I are both diagnosed with a vague connective tissue disorder AND hypermobility and we both started having syncope without any reason at the same age. How can this not be related????

One more question... It does not state ANYWHERE in my Mayo medical records that I have P.O.T.S which is what I had already been diagnosed with before going there... So does the diagnosis that I listed above mean I do not P.O.T.S anymore or is it just another word for it? Thanks! Jen

Thanks for the replies!!! My organs seem to be getting back in order. Bladder control is better... still leaking but haven't had a full loss of bladder control in over a week. My thryoid was almost at a zero as far as being hyperthyroid... but now it is .09. Still hyper I guess but better. I haven't had any real changes with my orthostatic hypotension and tachycardia. This is what my discharge report said: "Autonomic reflex screen was abnormal, with neurogenic orthostatic hypotension and adrenergic autonomic failure, suggestive of an autonomic neuropathy, perhaps autoimmune. A serum protein electrophoresis (SPEP) showed polyclonal hypergammaglobulinemia. A urine protein electrophoresis was pending at the time of discharge" I have no clue what this means. I have tried to research it but I am by no means as savvy as most of you on this forum so if you can add anything to what that means, I would really appreciate it. It sounds like they aren't SURE it is autoimmune because they use the word probable but when I was in the hospital they kept indicated that I have an autoimmune disorder and it is listed on my diagnosis list. Not sure why they would list it when it is "probable?" So, if I have an autoimmune form of autonomic failure or whatever.... does that mean that it will go away forever if the IVIG is effective? Or are they separate issues? I got a few different answers on that from the different doctors I spoke to. All the doctors gave me about a 50/50 chance of the IVIG helping but no one ever said that it would take away all of my autonomic problems forever. I guess I am still confused. I wish that I would not have been so sick while I was there because I could hardly ask or respond to questions. My state when I arrived was not good. My standing BP in the ER was so low that it couldn't even be registered and my HR was over 200. (sitting was 45/30 with a HR of 160) I had 4 syncope spells in the ER alone... (one when a poor Xray tech tried to get me to stand for a chest xray and I was so out of it I just did it and 20 seconds later down I went). By the time I woke up, I was on the gurney again so I have no idea if I hit my head or not but I sure had a heck of a headache the next day and a big goose egg.) 90% of the time I was there by myself because we have six kids and my husband was home with them. We live an hour away so for the most part I was on my own. I was so sick that I really don't have a lot of recollection about what went on while I was there. I am making a long list of questions and plan to make a call this week to talk to the head neurologist who treated me to see if I can get some more answers. If any of you can think of important things to ask, please let me know!

All I know is that I was diagnosed with an auto immune deficieny disorder... but it wasn't defined clearly because the test that states which one it is has not come back yet. I guess, according to my neuro at Mayo, there is about a 50/50 chance of finding out the true cause. The other 50% of the time you never know the true nature. I tested positive for a protein that indicates an auto immune disorder. I think that I definitely had issues absorbing vitamins because I have been lacking in many for so long- no matter how many supplements I would take. I guess I am just wondering if the rising of the ferritin level could indicate a positive prospect for improving my autonomic symptoms or if the two are just totally unconnected... I do have a lot of reports but not all of the labs. I will have to request them. Thanks for your response

Hi! Last week while I was still inpatient at Mayo in Rochester I received my first 5 days of IVIG treatments. Today was my first of my "weekly" treatment. I have 10 more to go. I haven't noticed any changes yet in my autonomic symptoms but there have been a few changes... First, I have always been iron deficient. Usually my ferritin level is between 8-12 and has consistently been this way for the past several years despite taking 2 iron supplements a day for over the last 3 years. They did a blood test today and my ferritin levels were at 70!!! The last time it was taken was in November and it was 11. Would IVIG raise my ferritin levels that quickly after just 5 doses? Is that a typical reaction to IVIG? Would that happen to everyone or does it indicate a more positive response, meaning would that predict any future success with autonomic system? Next, I have broken out in a horrible case of cold sores... both of my lips all the way to my nose are covered in blisters. I get cold sores occassionally but never this severe? Could this virus outbreak have anything to do with the IVIG? Just wondering if someone with more experience or info about IVIG might be able to offer some insight for me. Thank you. Jen

Thank you everyone!! I didn't realize that it took so long and fine tuning to get to the right dose of Mestonin. I thought about maybe trying it again and maybe giving up one of the other BP meds I am on... but after that experience I just don't think I will ever take it again. Even from the first dose I was given (and it was always given to me several hours apart from my other meds) it made me just feel "not right". As the dose continued to rise... my reaction just became more and more pronounced. The amount of testing that one goes through at Mayo is exhausting. I don't want to complain because I feel fortunate that I live only an hour away from Rochester and there are many on this forum who would probably love to be able to go there... and I was "lucky" enough to be admitted inpatient via an emergency referral from my electrophysiologist. I think like many of us... our emotions about these conditions is like a rollercoaster. There are days I feel positive and days I feel completely despondent. I am still in rehab. I had my first "weekly" treatment of IVIG today. So I have 10 more to go until I am done. I don't think that I have noticed a difference in any of my autonomic symtoms.. but there are some changes (I was going to put on a different thread). Now, I found out that I will be going home soon. After spending most of November and December in the hospital, and wanting nothing more than to go home because I am just so tired of being here...I want to be HOME... all of a sudden tonight I started feel nervous and a little fearful about going home. This is crazy to me but I am nervous. I will need to use a wheelchair and nothing has really changed... Most of the time I am pretty much bedbound but I am trying to become more independent.. I wish that I would have had a better improvement with my symptoms but maybe that will come with the IVIG after more treatments. Because we haven't received the results yet about the nature of my auto immune disorder they couldn't give me a clear answer on whether or not the IVIG would help my autonomic problems. I guess time will tell.

Hi Everyone!! So sorry that it has been so long since I last updated. It has been quite the couple weeks. I went through the initial 5 days of IVIG treatments. They made me a little bit sick (I still kind of feel that way). The worst part was a really bad headache during the treatment. I have my first of the weekly ones (11 more to go) on Thursday. I wish I could say I could already see a big difference but at this point I don't notice anything different. I am still having the major OH and high heart rates and syncope. The only thing that has changed is that my BP is a little more elevated since I started the IVIG but it hasn't stopped the drops. I will still drop the same amount of points and my HR still rises the same... just from a higher level. Then they tried me on Mestonin when I was at Mayo and gradually increased the dose. From the first dose, it didn't feel right to me. I am not sure why. But by the time I was at my first dose of the full amount I felt bad immediately. I was breaking out in a horrible cold, clammy sweat. I was wearing my compressions (double- knee highs and then a full legging type over that) so I was freezing and my teeth were chattering. I became very irritable. Horrible headache and double vision. The nurse came in to do my orthostatics and lying down my BP was 190/140 my HR 54. My normal BP lying is 100/80 MAYBE on a good day but typically 90/70. Sitting it went to 140/110 HR 135.. Standing 100/70 with a HR 180. I felt AWFUL. Had all the symptoms like I was going to faint plus all of the side effects but I didn't. So the nurse tries to tell me what progress it was. To put it mildly I didn't agree. My body felt horrible. I was shivering uncontrollably and started hyperventilating. Instant migraine. I asked her to get the doctor ASAP. She tried to tell me AGAIN what progress this was because I didn't faint.. REALLY? I would rather faint and have it be over in a couple of minutes. This way I suffered for hours. I just curled up in a ball and sobbed hysterically for 20 minutes. 20 minutes later the doctor finally came in and had the same discussion. Progress, blah blah blah. I am already on 3 other medications that raise my blood pressure. This was just way too much. So he argued with me for some time until I finally convinced him to look at the actual vitals and tell me how it is okay that my blood pressure could plummet 90 points and a heart rate of 180??? Okay, maybe I didn't faint (but I had all the same pre-syncopal signs) but I felt worse than I ever did. Finally, he agreed that it was still orthostatic but not hypotensive. Eventually, against his advice I just said I wouldn't be taking that medicine any longer. Emotionally, at this point I am just worn out. I was at Mayo until Christmas Eve. I was there a total of 12 days.. then I was transferred to an acute inpatient rehab center where I am right now. They did not feel I was safe to go home yet because of the syncope but I am at a loss. There is nothing they can really do for me here either. I am discouraged and tired of being in the hospital. Doing rehab and standing and all of these orthostatics.... the syncope... all of the tests I have been through... the infusions. All of it. I am just tired. I was in the hospital for Thanksgiving weekend. I was in the hospital for Christmas Eve and Christmas Day. I will still be here for New Years as well. Just frustrated and tired and tired of feeling awful. That said, at least my time at Mayo was productive. I did get a diagnosis. They can't be sure that my Auto Immune Defeciency is related to my Autonomic Dysfunction Neuropathy... but I do have both. I wish I knew more about what is going on but my brain has been in such a haze lately that I am hardly absorbing a thing. Any thoughts, suggestions, things I should be thinking about? Asking about? I guess I am feeling pretty frustrated to STILL be in the hospital- rehab- when there isn't anything they can do rehab wise to really change my condition... at least not in the short amount of time I can stay here. Mainly it is about being safe at home... but I am just so ready to go home. So that is my story. I had so many different tests at Mayo I can't even keep track of them all. I go back in about 4 weeks for a follow up with autonomic/neuro at Mayo. Maybe I can think of more things to ask and have a clearer picture. So because I have Autonomic Dysfunction Neuropathy and Autoimmune Disorder which may or may not be related... does that mean that I don't have P.O.T.S anymore? I really wish I would have been in a better state of mind upon discharge but I was an emotional mess. Any help and advice would be great. These weeks in the hospital are just getting to me. Thank you all for asking about me and keeping track of my progress. Jen

Today was my first transfusion and it went pretty well. No allergic reaction but I did have a pretty nasty headache. Other than that, it was event free. Now, I can't feel any effect from it 9 hours later. I am having the first 5 inpatient and then the other treatments in my home town in Wisconsin (about an hour away from Mayo). All I can say about the inpatient care here is that this is a pretty phenominal place and unlike any other medical facility I've visited. Whether it was just in my mind or what.... I don't know... but today 6 hours after the transfusion I actually was able to stand for 2 minutes without syncope and BP was 78/57... which is low but for ME... not too bad. Heart rate was only in the low 130's. Typically I wouldn't be conscious after a minute... BP would be 40/20 with HR in the 180's +. ( example: day before on TTT at autonomic center- BP dropped from 100/80 HR 78 to 54/32 HR 153 within less than one minute of being upright on the table and had syncope before they got me lowered back down) I have also already had two PT rehab (inpatient) visits and one OT and I think their techniques have helped me quite a lot too. So, all I can say is so far, so good. I was pretty scared of side effects but day 1 was quite uneventful. I will update again tomorrow. I feel pretty fortunate to be here, epecially inpatient, where I am getting ALL of the help I need all in one place at one time. I am not sure about the antibody question. I will have to ask the neurologist about that. To be honest, I am not all that clear on the difference myself and need to research it some more. I am still new to the forum and the disease really (6 months in at this point) although the neuro believes I've had all my life to some degree. That is why I was a little skeptical about the treatment because I didn't really know anything about it... but my neuro was pretty adamant (in a nice, not pushy way) that we start right away because he feels that time is of the essence and I have to say that I really do trust him and Mayo so I went along with it even though I was hesitant. They do have some evidence of some organ shutdown so that is why he feels it needs to start immediately (thyroid, pituitary, and bladder so far) Lots of dysfunction in those areas and my condition has progressed so rapidly in the 6 months. I just pray that this isn't a decision that I made without enough information and will regret at a later date but I also think I am pretty desperate for answers and to feel better that I made a decision based more on emotional than anything else. Like I said, I hope I don't regret it. Will update again after day 2 and see if I can get some more specifics..... Jen

I am currently inpatient at Mayo in Rochester as they try to figure out my true disorder, tonight I was told that I do have severe P.O.T.S and tested positive apparently for the autoimmune kind. I remember vaguely seeing a thread on this but not sure that I reviewed it. I have three neurologists that I am working with and they all seem to tell me that IVIG is the best way for me to start to get better and that side effects are minimal. I am supposed to start tomorrow for 5 days while I am still inpatient and then once a week for another 11 weeks. I guess in my brain fog confusion I didn't really question the doctor and this is a doctor that I trust and believe has helped me a great deal in the three days I have been here. But now I am nervous. I have done very little research and now I wonder what I am getting into. Is this going to be dangerous? Could it make things worse? I guess we will see how it goes tomorrow. I will be inpatient here until next Friday I believe so I should definitely have a good amount of testing to see how it makes me feel. I just hope this is the wonderful fix they predict it will be. They believe that I will get better much faster than I will without it. Anyone have this treatment at Mayo? Thanks so much!! Jen

Hi... I created a post yesteday about my appt. with the specialist at UW-Madison who felt that I have a severe autonomic disorder than he didn't really "believe" could be POTS for two reasons: a) he is one of the doctor's who doesn't believe one can have the rapid OH drops that I get and have POTS and he feels that I am too "sick or severe" to "just have POTS". I liked him but that statement bothered me a bit. There are so many people who have differing degrees of POTS and there are many people on this forum who are severely sick. He said he would consult with other "experts" in his area but they have no autonomic specialists. He did update my Cardio with notes but he did not consult with anyone by the next day. So the next morning, which I mentioned in a previous post, I had my first horrifying experience with complete loss of bladder control. Since then I haven't had any complete loss, but I am constantly leaking and not even realizing it. Oddly enough, when I have the urge to go, I have horrible urinary retention and CAN'T go. It will take me hours and hours to get full enough to finally be able to go and I am lucky at this point if I am going once or twice a day, intentionally anyway and I drink ALL day long. Very very conscious of that. Anyway, called my personal cardio to report the incontinence as a new symptom. I was a little concerned because the UW Madison told me he was afraid I had a progressive, genetic disease (but NO clue what it was)... so I wake up the next morning with a brand new symptom. That was a bit too fast of progression for me. So my doctor called me back and said he had already sent an emergency referral to Mayo Clinic in Rochester and he wanted me there immediately. He felt that things are just going downhill too fast and he is worried. Weight is way down in the last month, BP is lower every day and now even sitting it is low... and with the bladder issue he thinks that we need to just get to the specialist and if he sends me to the ER as an emergency most likely they will admit me and treat me right away. That is exactly what happened. I am currenly admitted here at Mayo Clinic and not sure how long I will be here. I am not at the autonomic center at this point (that is outpatient) but in the cardiac unit actually. But an autonomic specialist will be coming to see me tomorrow. So far I have on my team: cardiologist, 2 neurologists, endocrinologist, autonomic, genetic counselor, dietician, PT for rehab, and I am not sure if they have others up their sleeves. So far I have had extensive neuro testing which I believe they found some abnormalities but haven't consulted with me about them yet. I don't think it was major stuff, but just less feeling in my hands, feet and face and very large pupils with my left one being even larger, and poor balance and made lots of notes about other issues but like I said, no consult yet. What this means?? No clue. Neurology has a huge assortment of tests in line for me. I have pretty much been cleared already by cardiology (which I expected- sinus tachy is my only "problem" but not really a problem just the heart doing what it is supposed to do in that case). Not sure how they feel here yet about the orthostatic hypotension and a POTS diagnosis. My lying BP last night was 98/78, sitting went down to 62/44 and when I tried to stand I am not sure what it was but I fainted and my husband said that the monitor wouldn't even read it because it was so low... they could only see the top number which was 41 but couldn't read the rest. They also took me to do a chest xray which I had to stand to do (not wise and I warned him) and luckily he caught me just in time but stayed unconscious about 3 minutes after that syncope. So I guess based on my records, my low BP and two witnessed episodes of syncope they weren't going to release me to refer me to the autonomic center. The plan is to try to get as much testing done as I can while inpatient. I have no idea how long that will be. I am one of those people (like most people I am sure) who absolutely HATES being in the hospital so I did actually fight my husband over the this yesterday. I was exhausted from being upright in the car (3 hours each way to get to Madison the day before and spending much of the day in my wheelchair) just the THOUGHT of going to another medical center was just too much to take. You know how exhausting it can be to go over and over every symptom you can think of, family history, meds, etc. But I gave in and here I am. I will keep you all updated about my experience here at Mayo. So far, I can say everyone I have seen has been very thorough, very nice and compassionate and haven't run across any arrogant or dismissive doctors at this point. The inpatient care has been outstanding. So, the past few days have been very eventful for me. I just hope that I am finally in the right place to find out what is really wrong with me. P.O.T.S., whatever I have, let me just find out so I become fairly functional again because right now I can't even be upright. 30 seconds or more and I have syncope 99% of the time. But that is a vicious circle. The longer I am bedridden, the worse the symptoms will progress. Up until this point, the doctors who could not treat me felt that until I could get specialized help I had to keep myself safe due to numerous head injuries and concussions I've had. So that is the story!! If anyone can share their Mayo experience I would be so grateful. Like I said, I am still inpatient but I believe the autonomic dept. is outpatient in a completely different building and part of town. Tips, experiences here (good or bad), inpatient or outpatient, doctors you saw, tests, anything you could offer about what to expect would be so appreciated. If anyone had a lot of experience with Neurology that would be great too because at this point they are in charge of my case and making the decisions. Thanks everyone who took the time to read this novel. Have a wonderful rest of the week. Jen

I always have large pupils. HUGE! People always comment on them. However, my left one is even larger than the right. Doctors always comment on that. It usually takes a bit of time for them to constrict as they should, but most of the time they do appropriately. Interestingly enough, all four of my kids have HUGE pupils as well... almost taking up their whole eyes. I have always wondered what this means? It is autonomic or neurological?

Thankful, You weren't at all dismissive, just supportive!! Thank you for taking the time to reply and give me some support and advice. I did hear from my own cardio/electrphysiologist who referred me to Madison this morning. The doctor from UW-Madison did call him yesterday with a full report and his plan to consult this week so I felt that was a good sign. He was actually on the phone with my personal cardio within 20 minutes of me leaving his office. I think if I don't hear anything by Friday I will definitely call them and see if they think it is something they can handle. If not, I am going to see if all of these doctors will work with my insurance to get me to Mayo in Rochester (only 45 min away from me, I am lucky). Initially that is where my doctor wanted me to go but they denied my referral and sent me to UW instead. But if they can't treat me and it is documented then I need to go to Mayo to try to figure this out. And from what I have heard on this forum, that seems to be one of the best places for results.

I am so sorry. You are in my thoughts. I have been diagnosed for about 6-7 months and in the beginning I was still working and barely functioning but like you, walking up stairs would raise my heart rate over 200. It would always at least double or triple by standing for less than a minute. I unfortunately got to the point where my symptoms got much worse (not saying and pray that does NOT happen to you) and I am now on long term disability through my employer and in the process of applying for SSI. But in the beginning, I had some doctors just like that. " I wish I could help you, you must be frustrated, but this isn't something I can fix" I bounced around to so many doctors and specialists within the same hospital that it was crazy. I started with an episode of syncope so they put me on the one month Holter monitor. Shortly after, I started getting the shortness of breath. Gradually, I had more and more symptoms and felt completely non functional and had to stop working at the end of Sept. In Aug. I went to see a hemotologist because my ferritin levels are very low (8) and they thought maybe I was anemic. I guess I am not because hemoglobin is borderline low but still in normal range. He said these symptoms aren't from anemia or low iron and decided to delve into my chart. He asked about my heart and I said I wore a Holter Monitor for a month and it was normal (or so I thought because I never heard otherwise). So he said, well, I will take a look at it anyway. And when he pulled it up on the computer he was shocked to find out FOUR months later, no one had ever read the report! Which showed several episodes of tachycardia even in those early stages when my heart rate was 150+ just from walking and a few over 200. So he had me do a test.. resting he listened to my heart rate- 70 and he had me walk around the hallway in his office and when I got back it was 170. So that is when the real testing began and I finally had people listen to me but I just keep thinking if I had known that four months earlier maybe I would not be where I am today. Hang in there. I know it is hard and I pray your insurance will cover the Cleveland Clinic for you. You have documentation and they won't dismiss you. Jen

And I am sorry.. thank you, thankful for your kind words and support. I am not giving up and trying to hard to be positive. I know that a positive attitude can make all the difference. Sometimes this is so hard to deal with (sometimes, almost ALL the time, especially when new symptoms keep showing up and the others keep getting worse) but I have a caring family and doctors who are willing to help so I consider myself one of the lucky ones I guess.

Corina, THANK YOU for sharing that with me. I feel a little better knowing I am not alone. But sorry you had to go through it. I was just horrified was it was happening because I was just in shock! I too am lucky to have a wonderful and caring family and feel so blessed, especially when I read about some on this forum who have family members who don't believe them or dismiss my symptoms. How awful that must feel. Maybe my expectations were too high yesterday but I did learn some things I guess and I do believe that he will follow through quickly because he did say this needs aggressive treatment so that was promising. And at least he listened to me and believed me and acknowledged that I am very sick and didn't dismiss me. In that respect, I guess I was fortunate, right?

I am trying to track this currently. I was the first one offically diagnosed but after talking to my dad he said he remembers my grandma (his mom) fainting quite often and when she would have to go to the hospital for a week or two at a time quite often but it was never discussed. He does know he had low BP and has guessed maybe that caused the hospital stays but he isn't sure because his parents never talked to him about it... probably because they could never diagnose her. And he said he knows it was a medical hospital because he went to visit so it wasn't a mental illness or anything like that. But they could never figure out what was wrong with her. She passed away from a massive heart attack instantly in her late 60's and had never been diagnosed with any form of heart disease. She was hypermobile. Her father (my great grandfather) passed also relatively young in his late 60's I believe completely suddenly of some kind of brain blood vessel bursting. I am very hypermobile and can pass all the "tests" I can find. My 2nd daughter was born with a heart murmur as was I... she has always had circulation problems and would get purple legs and hands. That has gotten a little better but they always attributed that to her heart issue (she also had a hole in her heart which healed at age 6). She is ultra hypermobile- like can put both legs behind her head and just about anything you can think of. She was a late sitter and walker because she was so "floppy". I took her to a neurologist because even at one year she wasn't sitting up unassisted. He said she had some kind of connective tissue disorder that he didn't diagnosis but basically said it was no big deal and she is just flexible like I am. And eventually her muscles would get stronger and she would catch up. It did happen but didn't walk until age 2. Cognitive development totally normal. She is 13 now and doesn't have TOO many symptoms other than heat intolerance and she has had 3 or 4 syncope episodes over the last 2 years. My first syncope that I recall was as an early teen. So I am trying to figure all of this out but sadly, so many of the people who may know for sure are gone now. But it seems to me that there is a genetic component in my case.

It is very normal to have these fears, especially with the BP drops, tachycardia and syncope. It IS scary. And it is something we can't control for the most part. I have no warning anymore for my syncope and I just fall and drop wherever and have had several head injuries. That is always my biggest fear. I will faint and hit my head on the wrong thing or the wrong place and I could die. One incident was a pretty close call and have had way too many concussions. I could be an NFL player But as everyone else has said, P.O.T.S in itself is not fatal but the symptoms sure feel like they are, don't they? Maybe you can talk to someone about these fears and set up some safety plans to deal with your syncope to ease your mind. If this helps at all, most of the doctors have told me (and I am saying they know what they are talking about lol) that the tachycardia is not a worrisome symptom but the heart doing what it needs to do in response to the BP and blood pooling. Many athletes get high heart rates. I have been told this numerous times but I still constantly monitor my heart rate and worry when I see it double, triple or more. It FEELS scary!!! I want to give you a big hug because I relate to your fear. You are not alone, though sometimes it seems that way. This forum is so supportive and helpful.