Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by rubytuesday

  1. 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.
  2. 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.
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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.
  9. 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.
  10. 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.
  11. 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
  12. 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.
  13. 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.
  14. 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.
  15. 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).
  16. I have been on Midodrine for several years. I had to have a cardiac pacemaker implanted about a year ago. It is set to function on demand. I asked my cardiologist about the need to continue with the Midodrine since I now have the pacer. At that time, he did my first pacer check and it was doing >63% of the work of the upper heart. He told me he wanted me to continue the medication 'for now' but that I might possibly be able to come off of it some day. I have not had any syncope since the pacer was put in, but I have caught the BP dropping a few times before I felt the pacer--but I get similar symptoms when the BP suddenly jumps high. I was at a doctor appointment about a month ago and the BP was up 146/98. That is high for me (who'd always had the orthostatic hypotension). I hadn't even taken my morning dose of Midodrine that day. My cardiologist never liked my diastolic to go higher than 90 when he was experimenting with medications. Fearing the high diastolic I just quit taking my Midodrine. (I will take it if I am going to attend worship service or go someplace that I may have to stand in line for awhile). I really don't notice any difference. I plan to bring it up when I see my cardiology specialist in a few weeks. I am not sure if it's because of the pacemaker helping sense when the BP falls too low and speeds the heart rate into tachy mode or if it is because I've learned to avoid triggers and we are in cold weather here or if I've just been lucky. It is not something I would have done without discussing with my cardiologist first, but I knew the appointment was upcoming so I thought since I know it goes high abruptly (and don't know how high or how often it goes high, I just thought I would test the waters). I have 2 doctor appointments this week and am curious to see how it reads at both (one is the same doctor where it was high a month ago). I still don't have energy but I didn't while on the Midodrine either--I think because all the boughts of tachycardia and BP ups and downs must make me feel like I'd had an aerobic workout all the time. I did not experience any effects of withdrawal from the Midodrine but I cut it back by one daily dose for several days, then 2 doses for several days and then to 0 doses/day. That was my experience and we all come to the table with our unique co-morbidities and medication combinations. I would really suggest that first and foremost you talk it over with your physician.
  17. I had Rx for strong compression thigh highs. It took me > 30 minutes to put them on and 2 of us to get them off (after I struggle another 30 minutes). I have arthritic hands and hips/knees and the force needed to don the things and get them off seemed to put my legs/feet and hands in all kinds of contorted positions. I would work so hard that the skin would be rubbed raw around my ankles and never could get through a wearing without a burst vessel in my foot that then made it painful to wear even a shoe until it healed. I tried lesser compression and knee highs but with fluid/blood pooling in the legs/feet, being cut off at the knees, my feet and legs would be really swollen with the knee highs (not good). Needless to say, I discussed these experiences with my cardiologist who did not seem to object to my not wearing them as he had prescribed. I did give them a good try.
  18. Hi, Cala. Greetings and good to meet you, but not under these circumstances, but then because of these circumstances. Your assimilation to a carnival ride and from minute to minute are just how I feel--the ups and downs and surprises out of nowhere and being here one minute and then out to lunch. With me, I think this body stays in fatigue mode most of the time just trying to sustain a blood pressure and heart rate that will keep me afloat. When this pacemaker kicks in and boots my heart rate up, (multiple times a day), then it feels as if I've had a hard aerobic workout sans exercise. Don't be shy here. I've found everybody to be very, very helpful and we certainly can all empathize with this. I must admit--I was a long-time lurker too. I think part of it was that I was still feeling quite overwhelmed. Being able to finally have people to share with has actually been quite cathartic for me. I've seen so many good articles and posts that have helped me learn far more detail than I get in a limited office visit (where I seem to leave thinking of more questions than I had before I went in). You seem to certainly try to keep a positive attitude and your sense of humor. That is always helpful to me. What I hate most when I have syncope is not so much as how it embarrassed me but moreso as to how it worried/paniced others. When I had the first 3 episodes I tried to rationalize the causes as being--perhaps it was because I hadn't eaten before I went out, or perhaps the shower was too warm or perhaps I shouldn't have eaten before doing something. But the fourth time it happened, I was with my little grandson who was learning to ride his bike with training wheels. I was right behind him on my bike--so it took a lot of control and stamina with the leg muscles (no problem for a gal who was riding 10 miles/day in 50 minutes). Wrong. That episode landed me a call to PCP--demanded I go right in (it was closing time for them)--then directed straight to ER and 2 days in hospital and then the whole barrage of tests and medication trials and referrals and the rest is history. I even bought a cooling vest (never used it as I simply cannot tolerate the heat and high humidity and I cannot breathe) and a soft helmet (again--makes me hotter even though it is vented, as it seems to contain the heat in my scalp/head). I got grounded off my bike, driving restrictions, gardening restrictions when hot/humid, etc. The one thing that is constant is that I have to use common sense and stick to what I know I can and cannot do. But when I do have a good day or portion of the day--it is a gift and I jump on it. Best wishes on this roller coaster journey. ruby
  19. I cannot tolerate heat and high humidity as my blood vessels dilate and if I stand, the blood pressure drops because the blood and fluids that pool in my feet and legs (more with dilated vessels) doesn't return rapidly enough (which means blood not getting to the brain). Also the heat makes it harder for me to breathe and I cannot sleep if the room is too warm. On the other hand, cold is not my friend, pain-wise (having arthritis and fibromyalgia). However, I seem to breathe better in cold air. If my feet get cold, it seems I cannot warm the body up until the feet get warm. Swings to either extreme bother me. And in cold weather (here in the Midwest) if I'm wearing a heavy coat and standing, the same thing happens to me as it does in the heat. The vessels dilate and I feel weighed down by the coat and the legs get weak, shakey as the blood doesn't return to the heart fast enough (from the legs and feet) and it triggers the syncope. Since I have had the cardiac pacemaker put in (senses when blood volume returning to the heart is inadequate then kicks the heart rate in to speed things up), I still have my limitations. I still cannot tolerate being out in hot humid days and I still cannot stand very long when wearing a winter coat. Sometimes out of the blue, I will get a sudden surge of warmth sensation and go into a drenching sweat, looking as if I'd just stepped out of the shower--even the hair is dripping and the nose running like a faucet. I'd never encountered this before my dysautonomia. Then as it subsides, I chill so badly that the teeth chatter. Then I cannot get into a warm shower quickly enough to warm me up, wash all the sweat from my head--which seems to cool me down first. (I must use a shower seat if taking a warm shower as that is cautionary). It's quite uncomfortable and quite embarrassing. My migraines are triggered by the swings and the extremes, too.
  20. Giving a shout out from southwest OH. I have a cardiologist from the Cincinnati area that comes to our rural city. He sent me to Dr. Grubb at the University of Toledo's Cardiac/Dysautonomia Center. I feel very blessed to have a cardiologist who stuck with me through this (I was a challenge to him) and with Dr. Grubb. He told me from the get-go I would need a pacer 'down the road'. I rather put it out of my mind as I was in mid-50s and was thinking distant future. One and a half years later, he put the pacer in. I struggled with skepticism--even as bad as I felt, it was not like I had true syncope all the time (although I had near syncope a ton). I had syncope maybe 5 times that I could recall that year. But at the 3 month pacemaker check, it showed the pacemaker (on demand/dual lead/senses when blood return is inadequate to the heart and kicks in) was doing 63% of the work of the upper heart. Before I got in to see Dr. Grubb, I thought I was going to die, I was extremely debilitated by the hypotensive episodes. I'm sorry I am not familiar with good neurologists. Dr. Grubb is a good distance to ride for appointments from here, but well worth it. I think together they saved my life. My cardiologist had me checked by my neurologist while waiting to see Dr. Grubb for the first time, but she is local and did a very brief/generic exam and reviewed my chart (I'd seen her for years with the last visit about 5 years prior to that visit for treatment of migraines and clusters and status migranous, but she thought I looked 'familiar' but couldn't really remember me). There is only one neurologist in our city so I've kind of lost faith. That being said, she did recommend Mestinon for the Autonomic Nervous System but never ordered any new tests. I never started on the medication, however as my cardiologist wanted Dr. Grubb to see me how I was with just the Midodrine I'd been on. Dr. Grubb did add Mestinon but I couldn't tolerate it--I could not keep a thing down when taking it. The neurologist asked me to let her know what Dr. Grubb found out and when I called her, she reminded me that the Mestinon was the drug she was thinking about, but she did not suggest that I come back for any kind of follow-up. My PCP (Internal Med) is relatively new to a patient with my kinds of problems, however she was quick to recognize the POTS. And she is great at encompassing the bigger picture in my history when she sees me. She leaves cardiac/dysautonomia things to my cardiologist and Dr. Grubb. My cardiologist wants Dr. Grubb to continue to manage my medications until he gets to the point where he (Dr. Grubb) feels things have stabilized, and then he will manage things here locally. My cardiologist even gave me print outs of research articles about other medications he was considering for me, to run past Dr. Grubb (to see if he--my cardiologist, was on the right track with his thinking). I feel very blessed to have things work out as they did. I have compassionate, caring doctors who take me seriously and did not drop the ball or give up on me when all was not black and white. I wish you the same blessings. ruby
  21. Welcome to you both. I'd started with my symptoms and on my journey with this about 4 1/2 years ago, but sometimes it still feels new and overwhelming to me. I gradually went from near syncope to syncope. I, too, had a very wise cardiologist who referred me to a heart specialist in dysautonomia. At that time I had POTS but by the time I got in to see the dysautonomia specialist, I had orthostatic hypotension with the Autonomic Nervous system failure and the heart rate stayed low rather than the tachycardia I had with the POTS. I pool blood in the legs when I stand and it does not return to the heart quick enough, causing the syncope. The specialist said that injuries from falls (with the syncope) is the 4th leading cause of death in the 'elderly' and I was in my mid-50s). He told me I would need a pacer 'down the road' but at one of my follow-up appointments (last October) he told me if I had another syncopal episode, we needed to get the pacemaker in. Well it happened when I'd been standing and leaned over to pick something up making Thanksgiving dinner. I had the pacemaker put in in December. It is dual lead, on demand and senses when the volume returning to the heart is insufficient and then kicks in. I really thought strongly about doing this (I think I was in denial) but at the 3 month pacer check, it was doing 63% of the work of the upper heart. At my 6 month check, it was still doing 61% of the work of the upper heart. So I really did need it (I knew I felt so debilitated and limited with what I could do--going from riding my bike 10 miles a day, outdoors, up and down hills to being grounded to a stationary recumbent bike. But I did not realize I was having that many episodes where I was getting in the near faint or faint range. And these drops are with me taking Lexapro and Midodrine to bring my BP up. And I've never drunk so much fluid in my life. It so happened that about this same time, I was diagnosed with Common Variable Immune Deficiency (CVID)--my body is deficient in making antibodies, so I had to go on IV Ig (for life). I've subsequently been able to convert from the IV route to a subcutaneous (into the fatty tissue) infusion route. I really do not feel much difference in the fatigue I have as far as giving me long-range energy bursts. I know what you mean about the disguise. Everyone tells me how good I look (I feel like they may be skeptical that perhaps I over exaggerate my symptoms/condition) but my body feels like an old lady but my spirit and heart wants to play with the grandkids and ride my bike and be able to do my grocery shopping. I've been restricted with driving when the pacemaker was put in. That was a huge adjustment for me. I did walk to our local city cab office and got an ID to take advantage of a disability/elderly card that lets me ride within the city for $1 each way. They could not have been nicer, but still. My husband works and with so many specialists who want follow-ups, he can't just be taking off work all the time. We're in southwest OH but my dysautonomia specialist is clear at the opposite end of the state--really close to MI. I have learned a ton from people here and the articles, and the support of good folks who are going through similar struggle and have successes--well, it has been an amazing resource to me (thank you DINET). Again wishing you both a warm welcome. Confusedguy, you are very fortunate to have an experienced doctor. I was only the second patient my heart doctor had who wasn't responding to all the medication trials that he ultimately referred to the specialist--and he was so stirred with concern two years /ago that he picked up the phone after 6 months (the specialist's waiting list was a year out) to speak to the specialist personally to get me in right away. I honestly thought I would die before ever seeing the specialist and he must have too. I wish you both nothing short of successes in your journey. Some days I really feel overwhelmed but then I try to think of things I am thankful for and those who are much worse than me to try to keep a positive attitude. Blessings, ruby
  22. 53 when my symptoms started and am 58 now.
  23. Sorry about your migraines goaway. I've suffered them all my life. Imitrex seems to be the only thing that works with any kind of consistency with me. I have multiple drug allergies and my neurologist was trying all kinds of variations with anti-epileptic meds and antianxiety/antidepressant agents. I have allergies to products with aspirin/ibuprofen in them and cannot take NSAIDs. Since my blood pressure runs low, docs have always stayed away from beta blockers and calcium channel blockers with me, too. I've tried every anti-migraine prescription there is. My sister does better with Relpax than immitrex. Just goes to show you how we all respond differently. I may need a nausea medication when the migraines get full blown. I've asked for that in suppository form as once I am sick to my stomach, no pill is going to stay down. Some nausea medications will potentiate the effects of your migraine medication. It would be something you would need to talk over with your doctor. For some reason a heating pad to my head helps relax the spasms in the vessels and is more soothing to me than the ice packs. I like to make sure the room is dark and quiet. I've read that sniffing Chinese mustard will help but that did not work for me either (when I say I've tried everything I really have). I do take magnesium supplements at bedtime. Wishing you better health and relief from those migraines. ruby
  24. I too have problems with inflammation and BP that is lowest at night and early in the morning. Sometimes I will wake up drenched, hair/pillow/bedding/nigh clothes and have to get into shower/changed. Never know when it is going to happen, winter or summer. I have COPD/asthma, too and find it easier for me to breathe when colder in bedroom. I have air set on 64 or 65 on hot summer nights plus the ceiling fan. I wear only light cotton nightclothes (something breathable) and high thread count cotton sheets (that feel cool when you first get in). I don't use any styrofoam padding or pillows. I use a light down blanket in winter and a cotton quilt that I can easliy kick off if too hot. My DH says he freezes (but he gets to sleep as soon as his head hits the pillow, while it takes me a good while to get to sleep). He cranks the air warmer and I try to go behind him and turn the air cooler at bedtime. In warmer weather, I use sheet and sometimes kick that off. I have a thin cotton bedspread over that and a folded quilt at the foot of the bed. DH pulls up all the bedding but using light, breathable bedding and sleepwear, I can manage with just the sheet. I feel for your family. DH complains to everybody that I'm trying to freeze him out and sometimes he gets mad. I just tell him there is a difference in being cold and not being able to breathe.
  25. Yes, my cardiac specialist was going to add DDAVP for my OH/dysautonomia until I pointed out my allergy to it. They use it to control hemorrhaging and to concentrate urine. I had to use it after pituitary tumor removal when urine was hypo-osmolar and after hemorrhaging after surgery (it was then I broke out in itchy hives). Being a bleeder, I will reserve it for times of hemorrhage with some antihistamine.
  • Create New...