rubytuesday

I have been diagnosed with POTS, dysautonomia, orthostatic hypotension, CVID, EDS III and SICCA (among other things). Every orifice of my body is extremely dry and uncomfortable. My opthamologist (who performed my video laryngoscopy) prescribes Restasis for the dry eye and my otolaryngologist prescribes Evozac for the dryness elsewhere. The gyn prescribes estrogen cream for yet another area. Due to my bone loss and immune deficiency/having had a pituitary tumor removed, steroids are not an option for me. I am on weekly infusions of gamma globulin for my immune deficiency. I have had trials of combinations of medications (i.e. Neurotin, Effexor, Cymbalta, Lyrica, Trazadone, Gabatrol (sp?)) for neurological problems associated with fibromyalgia pain, chronic myofascial pain and migraines but none of my specialists have been able to address the sensation I have sometimes of the sensation of a small insect crawling near my ankles/up my shin. I am told that my autonomic nervous system is failing. I am very sensitive to medications and do not achieve the deep phases of sleep without constant interruption (the stage of sleep in which tissue repair takes place). I do not know if you have had polysomnograms or not but it is something to consider. I have met others with neurological disorders who receive IV gamma globulin transfusions (that seemed to have helped with their ambulation/mobility). I really do not know if any of this has helped but thought I would offer my experience.

My heart doctor referred me to Dr. Blair Grubb at the University of Toledo Heart/Dysautonomia Center. It is not that far from the Cleveland Clinic. He is not far from Cleveland and is excellent in his field. He also diagnosed my orthostatic hypotension in the 2 years of treatment I was receiving as the POTS progressed.

I had two tilt table tests. I did not pass out in either (and up until those had only passed out once in my life). After the first test, my cardiologist ran a 24 hour and then a 30 day event monitor. He diagnosed me with neurocardiogenic syncope (even though it was 'near' syncope). I began various trials of medications/salt/hydration, etc. and none of them seemed to help. A year later, he wanted another TTT but performed by a different cariologist/physiatrist. He said the HR rose and the BP dropped consistent with a positive result even though I did not pass out. He said it could well be that the cardiac lab was not able to create a warm enough environment that best lends itself to passing out (it was cold in there while it is supposed to be very warm). Don't be worried. I would have had a third or a fourth if it was necessary to help define what was happening to me. My condition progressed to full blown POTS/syncope/orthostatic hypotension/dysautonomia and it took a course of nearly 2 1/2 years and many referrals to other fields of expertise to rule out or to help establish definitive diagnoses. It takes persistence and patience and for me, gratitude to have a wonderful cardiologist who believed me and did not give up on me. Best of health, ruby

I just had to add my 2 cents as far as 'autonomic tests normal'. I have POTS/dysautonomia/neurocardiogenic syncope/orthostatic hypotension, BUT, sometimes my blood pressure can run high and/or normal, and more times than not, my heart rate is normal. It is infrequently that I will burst out in an outpour of sweat to such degree that even my hair is dripping and it looks like I'd just got out of a shower. That is the nature of dysautonomia. Your autonomic nervous system can function perfectly fine but then go wacky. My cardiologist suspicioned POTS that was resistant to traditional modes of treatment. He sent me to a neurologist for second opinion. She said I was neurologically fine (but hinted that it could be something with the ANS, and in fact asked me to call her to let her know what the specialist in dysautonomia determined). My cardiologist referred me to this cardiac specialist in dysautonomia to help establish a more precise diagnosis and treatment plan. The specialist explained to me that my ANS is in failure and it is the nature of the beast to misbehave out of the blue and sometimes at the most inconvenient/embarrassing times. Then when I may be feeling fine/normal, I move to get activities done and may be fine doing so, but it is unpredictable. I could be fine and in the midst of doing a simple chore then boom, it hits. Thus, I've taken to heart the cautions and 'don'ts' my specialist gave me. Perhaps you need another opinion, another set of eyes. I kept a record that would graph my 30-60-90 day BP and heart rate highs and lows (MedHelp.org or .com has a tracker) that I would take to my next appointments at each visit, highlighting the lowest. I would keep record of each episode I had (date/time/what I was doing at the time) and take that along with the graph. In addition the graph demonstrated your highest/lowest and average over the range that you print. It would give the doctor something more objective to look at rather than just at the time of my visit. Best wishes. ruby

The TTT is one of the first of many tests that I had. I had never completely lost consciousness before then just 'near syncope', very near syncope that would drop me to the ground. Apparently I fit the symptoms but never passed out. I was not given any ntg. I had a 24 hr event monitor (had requested 30 day event monitor as I was not feeling symptoms on a daily basis when things first began). I had never passed out before in my life either. The 24 hour event monitor was normal, but as symptoms persisted, I was put on the 30 day event monitor and within 2 weeks, I received a call from the cardiologist that I was having some sort of tachycardic episodes. From there it began, one medication to another with dosage adjustments, etc. all to no avail. The following spring (almost a year later), my cardiologist wanted another TTT but this time to be done by a different cardiologist/physiatrist. Again I did not pass out but was told that my BP and tachy fit the mold for neurocardiogenic syncope. Again more trials of medications that did not work in addition to examination by neurology and endocrinology. The condition progressed to POTS. My cardiologist referred me to a specialist in dysautonomia and he confirmed POTS and orthostatic hypotension, telling me that 'down the road' I was going to need a pacemaker. In a little over a year from my first visit to him, I did need to have the pacer placed. It senses when the blood doesn't return fast enough to my heart and kicks the heart in to beat faster/harder. I was shocked at my first pacemaker check to learn that the pacemaker was doing over 60% of the work of my upper heart. Yes, I would say there are things that can be found and/or ruled out. My cardiac physiatrist told me that he believed that the reason I did not lose consciousness was that their TTT room is cold, despite the efforts they make to create a warm environment for the study, it does not get warm enough for some. You might consider a repeat TTT and perhaps at another facility or by a different cardiac physiatrist. The environment for the study can be a big factor on the outcome. I was very blessed in being a menopausal female that things were not dismissed as anxiety or stress since little can be in black and white unless you get seen as the event/symptoms are occurring. It took them nearly 2 1/2 years to establish the right diagnosis and treatments for me. I was not, however, responding to the treatments and was referred to a cardiac specialist in dysautonomia. I doubt he would have ever considered seeing me had I not had the TTT (along with the medical records from the cardiologist of my history). I also started keeping a record MedHelp(.org or .com) had an excellent way that one can enter the blood pressures and heart rates. Whenever I had a 'spell' I would check my vital signs and enter them in on its tracker. You can print out a graph of your results to take to your next appointment to have something in black and white that shows what is happening to you. Along with the graph, I would keep another record of the dates/times of my 'spells', symptoms and what I was doing at the time it occurred. I think it really helped to get to the root of things. I would highlight my extreme lows with the BP and highs with the HR. The graph also documents your high and low HR/BP for 30, 60, 90 days. At least it offers data that is objective. Best wishes on your venture to better health ruby

I see Dr. Grubb at the University of Toledo. He specializes in Dysautonomia among other heart conditions. I was referred to him by my cardiologist in SW Ohio. It is a hard 5 hour drive for us and he, too, had a year long wait list. At the time, summer was fast approaching. It was the worst summer in my life. I truly thought I would be dead before I ever got to see Dr. Grubb. When my cardiologist saw me again in follow-up 6 months later (and to check if I had any success in getting in sooner, as you can keep calling to see if there are any cancellations so that you can be moved up), he was moved with such concern that he personnally put a call in to Dr. Grubb (a physician my cardiologist knew by reputation and research only). Dr. Grubb was wonderful to see me within 2-3 weeks. I credit the two of them for saving my life. I have also heard good things about the Cleveland Clinic although I have not had any experience there for this particular condition. Blessings ruby

Has your ENT run an endoscopy and collected a specimen for culture and sensitivity? I suffered from chronic and acute sinusitis and ultimately with osteomyelitis in my sphenoid sinus. The culprits were organism/fungus seen in severely immunocompromised people. From that info, I sought an Infectious Disease specialist to see if perhaps I needed one. This was all prior to my POTS/dysautonomia although I have always had orthostatic hypotension. The ID ran multiple tests on my immune globulins and other components of the immune system and vaccine challenge tests. Turns out I have Common Variable Immune Deficiency. The ID recommended gamma globulin transfusions, but I did seek a second opinion from a non-associate Immunologist from another city who totally concurred with the diagnosis and treatment. One thing beyond the antibiotics and drinking lots of non-caffeinated beverages I do are the nasal rinses. At one point, my ENT wrote a Rx for Alkolol Solution naso-rinses (has Listerine and saline and I don't think you have to have a Rx for it) which only helped me for very brief periods, but everyone is different. I also have a deviated septum. Best wishes for better health. ruby

Hi, Gemma. You have the right attitude in picking yourself up and dusting yourself off after that ordeal. My pacemaker was put in in Dec. 2012. It was put it at a hospital far away from home (my cardiologist referred me to a specialist in dysautonomia there 1 1/2 years prior). I had my first pacer check done at the same hospital in Mar. 2013. Then with that specialist's permission and investigation/coordination on my part, I was able to get the device monitoring done by our local cardiology group. The first time was done last Fall by the nurse. Monday I had another 6 mo. check only this time by the cardiologist (they alternate visits between nurse once then doctor and rotate each visit). So when cardiologist comes in to meet me--he thought I just had the pacer as he proceeded to tell me how the nurses would tell me about hooking me up with a telephone transmitter (mine transmits wirelessly overnight). Then he proceeds to ask me all about who diagnosed me with POTS (2 cardiologists in his group, and my PCP). Then he asked how I ended up at specialist at other end of state (cardiologist referred me when things progressed and I just wasn't responding--all should be in the records as seems like most of the visit w/ the cardiologist they are inputting info in the computer while they talk to you--sometimes with their backs to you). Then he asked if that specialist was in Columbus (the specialist is up way north of that and is fairly well known in his field). He asked if the specialist concurred (I had this appointment scheduled for 6 mos and obviously he hadn't taken one minute to review any of my records even from his group). I wondered why he thought I was sitting there with a pacer. I intentionally did not have my morning cup of coffee before the appointment, nor did I take the morning meds (that increase my BP) as I wanted him to see me as I typically would be without either. Thankfully again (and a bit to my surprise), the blood pressure was really low--and the nurse double checked by doing both arms. So this doctor did acknowledge the hypotension. But I described instances and events where the BP goes unpredictably high (since I wanted to discuss the medication I take). He very patiently explained he did want me to continue with my medications to raise my BP even if it does go too high from time to time as that is the very nature of the dysfunctional autonomic nervous system. I hope this doesn't discourage you. I used MedHealth.org to track my BPs and heart rates, then print off the graphs from visit to visit. If I had big ranges, I would add those in in a different color and journal what I was doing. I think that was another tool that helped the physicians see what is going on and how often (some seem to rely on hard data). That graph also logged the high, the low and the median of BPs and HRs. I am sure that it also helped (when seeing the specialist up north) when my cardiologist took the time to personally call him and discuss my case. As this 'new' (to me) cardiologist was questioning me, I told him how it began and how I'd dismissed the first 2 or 3 episodes but if memory serves it was around Jan. 2009. And here I was having to go back over the whole thing again. I would not advise anybody not to take his/her medications, but I stay away from caffeine and my meds for the dysautonomia just until I get that office visit in (as long as I feel I can tolerate it). Still with the dysautonomia--one never knows. You would think that a specialist in the field (of all people) would be the first to understand this. I'm glad you got home and were able to see some interesting sites. You deserved to be indulged after that. I feel terrible when DH has to take the time off work and get up at o'dark thirty (he never wants to get hotel) and do all that driving when he has health issues of his own. We have to jump through enough hoops and have people think we're neurotic or lazy--especially if 'we look so good'. Best wishes to you.

I'm not sure if I was mis-diagnosed or if things progressed over time. Mine began maybe once/mo. with near syncope. The third episode was much worse and landed me in the hospital where I underwent a gambit of cardiac tests and an MRI/MRA of the brain and blood work to rule out other things. All but a B vitamin deficiency were normal. Then on to a tilt table test--never had syncope but was in pain and the room was cold (hard to re-create a warm relaxing environment under those circumstances) and a 24 hour event monitor that later became the 30 day event monitor (that I requested from the get-go to save healthcare dollars especially considering at the time my symptoms were erratic). The monitor was into its 2nd week when the cardiologist called telling me he found the problem--some tachycardic events (adding neurocardiogenic syncope) that he prescribed something for. Hot humid summer followed and my episodes only increased despite eating salt and modalities suggested and fluids, fluids and did I say, fluids? By the next spring, (1 year) my cardiologist told me he felt I had POTS (as did my PCP) and had my tilt table test repeated using same hospital but different cardiac physiatrist. Never fainted with that test either but that specialist told me my heart rate and blood pressure changes met all the criteria of POTS. He added flourinef (but forgot about potassium which went critically low) and I was again to eat/drink salt. Still no improvement and hot humid summer followed as condition didn't respond and meds were changed and adjusted. As spring rolled around (2 years) the cardiologist was so concerned that he referred me to a specialist 'with this sort of thing' (now my cardiologist still told me POTS but never discussed dysautonomia). About 7 months later and the condition to the point I thought by the end of another hot, humid summer that I was going to die before seeing any specialist, my cardiologist got me in to see him sooner. It was he, 33 months later who explained to me about my orthostatic hypotension and the autonomic nervous system failing me.

Employers have a way of getting around that by going from great evaluations to suddenly one that leaves you scratching your head and feeling scared for your job security when you've not changed your work habits (only bettering them by the gain of more experience). Then it looks like the ball is in your court to either disprove their claims or to prove their breach of FMLA. It isn't fair. To them, it's business and profit, bottom line. When my employer blindsided me once, that was the point my attitude about my job changed. I had worked there for over 20 years but at that point, it was no more coming in early or staying late or going above and beyond. I too became 'just business' by giving only what was required of my job--in hours and in demands--no more, no less. Surprisingly, to me it seemed to lift a burden off my shoulders (being type A perfectionist that I am). Where I worked, if one was written up, that employee always had the right to dispute the claims prior to signing the write-up (i.e. give examples that counter what the claims are). Another issue where I worked (and took early retirement from) is that performance evaluations determined wage increases. Salaried were always the end of the year evaluations and when the budgets were looking bad, evaluations suffered (using those employees as a way for the company to save money--at the expense of holding pay increases). I too have had the satisfaction many times over of being asked if there was any way they could get me back. I agree--as hard as it is, especially if you sense that there was some sort of conspiracy that folks you'd been with all this time knew about, just know, some people although managers just do as they are told to save their own necks. Some managers have no or very little formal training in management and have no place as managers. Hold your head high. Remain confident in your work ethic, and just take things one day at a time. Best wishes.

Hi, IceLizard. I was just at my cardiac specialist in dysautonomia today (the one who inserted my pacemaker). I was describing incidents to him in that I have no fever (but I run low temps typically) but I abruptly feel really warm (not hot flash--I'm post menopausal and those were/are definitely different) followed by profound weakness, muddle-headedness and profuse sweating to the point sweat is dripping off of my hair, off of my face, my clothes drenched thru to the point of needing placed in the washer to cleanse out the sweat and not sit/mildew as soon as I am physically able, and requires showering to get all the sweat washed off of me once the teeth-chattering chilling subsides. He told me that in some of his patients that do not faint, these symptoms are their 'signs' of their blood pressures dropping. He said that in my case, had I not had the pacer, I would be out cold and not notice what is happening, but with the pacer and being upright and conscious, this is my body's response as the blood pools from the vasodilatation and the body/pacer struggle to get that blood pumping back up to the heart/brain. He had no doubt it was connected to my dysautonomia. I have so many sensitivities to medications, latex and environmental elements, and the specialists believes there is a link with the complex immune deficiency in these reactions. I didn't test positive for the mast cell reaction when I was all broken out with large red itchy weepy welts from latex. (But again with the immune system being compromised and now on gamma globulin, I've learned the blood tests are not always accurate). I hope you find answers from your doctor tomorrow. More importantly, I hope you feel better and that it was just some fleeting virus or something passing quickly by. Blessings. ruby

I just wanted to say that I can relate to your situation as one who had taken decades to have been found to have orthostatic hypotension, autonomic nervous system failure, common variable immune deficiency + complex immune deficiencies, delta granule storage pool disorder, POTS and Ehlers-Danlos III. As certain conditions can only be verified by examination and a combination of history, family history and such, and some blood tests unavailable or uninvented back decades ago (when other tests were not proven) and with the immune deficiencies, blood tests could read negative but be false negatives and now being on weekly gamma globulin, they could read positive but be false positives. You have to be your biggest advocate. Don't let one specialist upset you so--you have been diagnosed by other health care professionals. They see you more and are more invested in you. Trust your instincts. My experience with the POTS/dysautonomia was also having to be on a year long wait list for a certain expert that my cardiologist was referring me to. I had a follow-up with that cardiologist about 6 months after the referral had been made and my condition had so deteriorated that my cardiologist picked up the phone and spoke to that expert himself--getting me in within 2 weeks. I dreaded the very long road trip. Since my tilt table test was negative twice (yet the cardiac physiatrist who conducted the second said that short of passing out, I met all the criteria of POTS and actually began different medications) I was sure it would be a wasted trip, (and upset husband for taking off work and driving me all the way up there) and feeling like I had a big 'Neurotic' label pasted to my forehead (like people tend to make us feel). But to my amazement, at that exact visit, my pressure dropped to the point of meeting orthostatic hypotension criteria. I don't know if it always did and even since POTS, sometimes my BP will go high (unusual for me) with activity. But maybe it was the call from my cardiologist. I had also kept a log using a website, grafting my BPs and heart rates daily for a comparison--when I would have episodes thru the day, I would also add to the graft in another color the range of the extremes of both. I took the graft to every heart doctor appointment and to the specialist. It gave them something more concrete (I also made note of what I was doing at the time of any 'event'). You know your body better than anyone else and you have to listen to that. Is it a very frustrating road sometime? Yes--but be persistent and don't ever dismiss something you know is wrong. Best wishes and keep your chin up. This is just one little (albeit expensive) bump in the road.

Mestinon made me deathly sick. I was tied to the toilet at both ends. I was also trying to conditioning with physical therapy when I was taking it. I was so embarrassed. I would be retching and hugging the commode, and I could feel the BP still tank and have to lay down immediately on the closest bench or floor before syncope. They'd always check the vital signs and oxygen level and they would make me stay til things came down to a certain level. Then they would want to call somebody to drive me home (when I drove my car in). My heart specialist finally took me off of it after about 3 months of it.

I was originally diagnosed by my cardiologist and PCP (internal medicine). But my cardiologist also had me see a neurologist to rule out neurologic defects. The neurologist told me my exam was negative (but suggested Mestinon to treat the dysautonomia). She did not relate any need for me to see her beyond the consult (perhaps as I was in the hands of a cardiologist who had already recognized what was happening to me?). I agree that either could treat you, but it should be a physician who is well versed with POTS and dysautonomia.

Mine started suddenly (I can remember when) and was gradually progressive. I put 'combo' of causes as I have EDS, chairi I, CVID, orthostatic hypotension, and we can have false negatives on autoimmune tests, and once on gamma globulin we can have false positives and false negatives).