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Everything posted by dano2718

  1. I did have had a sleep study which showed mild apnea during the few hours I was asleep - the Dr. said it probably was not significant to be helped by CPAP machine. I got to meet Dr. Biagioni at Vanderbilt this last week and he confirmed my previous TTT results and added me to his database for future trials. I guess I misunderstood that his clinic is primarily for research and not as much for treatment, but he is going to work with my GP on trying some drugs for treatment. I didn't mean to say medicine was better in the 1800's - no way! I guess the reference to medicine in the 1800's is from reading about the discovery of diseases at that time by methodical investigation of patients with poorly understood complaints. Today practice is much more of a standard algorithm - if the symptoms arouse suspicion of a disease, run the highly specific tests for that disease. If test results are negative suggest a psychiatric etiology.
  2. Hi Ernie, and everyone else who responded- good things to consider Well my TTT 2 years ago revealed what I have been suspecting, delayed orthostatic tachycardia with a delta of 50+ BPM accomanied with diziness, heavy breathing and sweating. I can usually manage the orthostatic symptoms if I am tactical about where I stand still, but the fatigue and brain fog gets pretty heavy during the day. The other stuff is much less frequent, and may be just from stress about this condition- sweats and chills, sweating through the night, palpitations in bed, and feeling like if I go to sleep I will stop breathing. Maybe treating the orthostatic symptoms will really help the fatigue much such that I can live without a more precise understanding of my condition. I do remember (at times) to be grateful that this is just a functional problem, not a life threatening disease - but it does get frustrating at times. Will let you all know how it goes at Vandy! thanks
  3. Hey all - Sorry this is long, but I am looking for some ideas, and any of your thoughts are welcomed. I have been taking stock of how medicine treats patients with "functional disorders", and I feel like it's a recipe for failure. I don't think I have a disease, but the same disorder of function that my dad has complained about for 30+ years - with some pretty wicked fatigue. As I get ready to go to Vanderbilt and later on, the Mayo clinic, I am thinking they will use the same general algorithm I have run into before: 1) Run specific tests for rare diseases which I don't have obvious clinical signs of. 2) When the tests come back negative, suggest a non-falsifiable diagnosis such as "depression" or say "you are healthy, get plenty of rest, exercise, and eat right". Thing is, my dad and I both have tried medical doctors who only test for diseases, and even humored psychiatrists with trials of sundry anti-depressants though we are fatigued, not exactly depressed. None of that has been much help. The only useful tests I have had to understand what is going on was with "non-specific" tests - which turned out abnormal: the TTT, and natural killer cell activity test. Do any doctors investigate the way doctors did in the 1800's - like running non-specific tests (like TTT, serum neurotransmitter levels, cold pressor test, etc) and then subsequently more specific tests to answer the question of why the non-specific tests show up abnormal. I know it would be time consuming, but it seems much more useful than wasting time looking for rare diseases I probably don't have. Is the kind of investigation I am talking about considered "bad practice" by the AMA??? Just frustrated by how difficult it is to get any clarity from most of my doctor visits - and tired of feeling sooo tired.
  4. I know it's a scary feeling, fortunately it happens to me pretty rarely. But I understand the feeling. Maybe you notice as you are relaxing in bed that your breathing gets shallower and shallower. For me, just as I'm about to fall asleep, I panic and my heart pounds - it's as if I think when I do go to sleep, I'll quit breathing (kind of like Ondine's curse). Can't say don't worry about it, but I have had these events going back at least 8 years and am still breathing okay. I think you would have to have pure autonomic failure for it to be potentially dangerous.
  5. Just wanted to say "Yes, me too". It happens occasionally to me only when I am laying in bed trying to go to sleep and I feel forceful heartbeats (but no tachycardia). I can count my pulse by the sound of my ear rubbing against the pillow with each beat. Of course it's also hard to fall asleep when you're pulsing like this. Frustrating, I know
  6. Hey there - I'm not sure about blood volume enhancement with Florinef but I just had to congratulate you on your research, persistence, and getting an objective test abnormality. Way to go!! Hopefully this will steer your treatment in the right direction.
  7. Hi Niki - It sounds pretty frustrating, but I can identify with some of your symptoms. Here's my reply:
  8. Hi all - it's been a while since I last posted, but had something to ask about. I went out to dinner with a friend tonight and was reminded of one of these odd symptoms I get in addition to feeling POTSy. Towards the end of our dinner, I noted again how my cheeks get to feeling worn out or sore after socializing - and my voice intonation goes flat... It's like my vocal system is tired out from the effort of talking. Does anyone else get like this ? It's kinda odd, and frustrating.
  9. Only speaking for my own experience, I have found strength training twice a week makes a huge improvement in the brain fog and fatigue. I feel much better than I did with Provigil - and it's a lot cheaper. It may not work in each case, but it seems to for me. I'm still going to fork out the $$ for my provigil script just in case the improvement doesn't last. Aerobic exercise seems to bring back the horrible brain fog, so go figure.
  10. (subtopic should have read "Pro's and Con's ?") Just had my first visit with a new primary care doc. I'm not feeling so sure about it after the first visit. I tried to be concise and pleasant, and I brought my records from the past year and a half of ruling out other things. The doctor looks at my records and says "You've had quite an extensive workup, is there anything else you want me to investigate?" Anyway, I didn't feel very reassured overall by this visit. Anyways, I'm wondering if anyone has switched to boutique/ concierge care for their primary doctor? I have insurance, but when I get the claims back I see how measly they are getting reimbursed. No wonder they are in a hurry and stressed out. I've read some really good things about docs opting out of managed care and both patients and doctors feeling better about it. I just wonder if it would be worth $1,000 a year or so just to feel like I am the paying customer, not just another copayment. Anyone have a positive or negative experience trying this? I'm really curious!
  11. Dayna - I can understand your concern- no easy answers here. At least acknowledge your gut feelings on this, even if you stay with this Doctor. Your instincts can tell when a doctor (or their whole practice) is stressed out. If the doctor is often unpleasant, you feel like you are always hurried through the visits, then suspect that the clinic is "unhealthy". Going to an unhealthy clinic is not healthy. Whatever the cause - the doctor has personal problems, low reimbursement rates, doesn't like you, etc - you are going to feel stressed out more by trying to get more out of a doctor that doesn't have much to give. FWIW, Dano
  12. Dave - That's really good news. It's very reassuring to meet with a doctor who sounds like he's seen your modality of symptoms before and feels like he can treat it! I hope that the ACE inhibitor issue is really the culprit and that things get better for you.
  13. No Bananas- You are very right about the value of activities, especially when you have a chronic health problem with fatigue. It can be hard to take friends up on social invitations when you aren't sure what your going to feel like that day. Sometimes it is helpful to just plan something, however silly, for yourself- like a bubble bath or carry out diner and a movie, a manicure if that's your thing. The point is not that it's an extravagent or exciting plan, but that you are doing something nice for yourself.
  14. Nina- So glad to hear you are doing better and sorry you have had such a rough spell recently. I hope your doctor gets further along the learning curve. It sounds like they are understanding and willing to work with you, so lets hope so!
  15. I get soreness in my legs that comes on during the middle of the day. It's similar to lactic acid soreness from working out, but different. It doesn't seem to have any correlation to working out, though.
  16. Hi Claire - Yes, these are all overlapping - if you hang out in support groups for these syndromes, you'll see a lot of connections. Each of these syndromes have some precise criteria to be diagnosed with such. You may wish to pursue a specific diagnosis, but you may be like many who don't meet the strict criteria, just a lot of similar symptoms. Getting a diagnosis takes time and seeing enough Dr.s. Not sure if being formally diagnosed with a syndrome makes much difference in treatment, but it may give you some peace of mind. Medicine just doesn't know what's going on in this area - but you are very right, something more is going on. I suspect that the muscle inflamation may be causing the POTS by way of increased vascular perfusion secondary to the inflamation. Find what causes the inflamation and that will fix the POTS (in those with muscle symptoms, not pure neuropathic POTS).
  17. Hi Dawn - My next door neighbor stopped over today and started getting the same "helpful" comments that I'm sure my dad got along the way. I kind of got mad but bit my lip. I don't think there is any quick effective response, unfortunately. I know from before I got sick, watching my dad's progression from the other side, it just never made any sense- I always thought there was more my dad could do, or he was focusing on his non-specific illness and he just needed to get out more, be more social. Trust me - its so hard for healthy people to comprehend that there isn't a lot to be done in this no man's land between disease and health - they just think you should do something more. If you could say "it's because I have MS (Lupus)", I think they'd stop offering advice.
  18. SSRI's or SNRI's were not good for me - as Marnian sumarized it well - you just don't care anymore.... I would get ideas as wierd as "why don't I skip school today and drive to the Grand Canyon... just because" . It's hard to describe, but I really appreciate having "me" back after being off the meds for years. Others may have a better theraputic response.
  19. I think psychiatry has been getting a LITTLE more mature as a science, but still belongs in the laboratory, not clinical practice. For all those years I got diagnosed with not enough serotonin, or dopamine, er... Norepinephrine, er "treatment resistant depresssion", maybe you're bi-polar. Come to find out that people may have too much re-uptake inhibition causing their symptoms, thus adding a reuptake inhibitor doesn't really help. I see now that Pharma has adapted to new research and makes the claim that SSNRI's no longer "increase " the levels of these chemicals in the brain, now they magically "help regulate" neurotransmitters.. Oh Yvie!
  20. Tried Provigil and it really helped fatigue and some cognitive symptoms but stopped for now bc of adding to hypertension. Tried Lexapro - for me it did nada. Remeron - I've heard it has a high poop out rate, but haven't tried it. Not a big fan of psychiatric drugs. Let me know if midodrine helps - I'm going to ask about it at Vanderbilt. You may try http://www.remedyfind.com/ for peoples experience with other drugs.
  21. I'm glad you posted this question, as I was going to do the same thing after rousing from bed . I think you will find that there is no good answer for whether a symptom is from CFIDS or POTS, or many other illnesses. "Unrefreshing sleep" seems to be common to both, and many on here struggle with insomnia. I was going to ask, like Kel about being unable to get out of bed before 9 - 10 AM. I also could get up at the crack of dawn in the past, but not now. Taking Lunesta helps the insomnia and I now get 7-8 hrs sleep a night. But still, I wake up at 7 AM with the alarm, and simply cannot do anything but cut it off and sleep / half sleep till 9 or 9:30 some days. It's like you wake up beat. Anyone else have trouble getting going?
  22. Hi Linda- I was just revisitng dental mercury poisoning the other day, getting hopeful for a short while. It's easy for me to get hopeful that I've found an explanation for all my symptoms, but as an engineer, I've come to appreciate that the body is very, very complex. The consensus among mainstream science is that dental fillings do not cause mercury poisoning. The levels of mercury in patients with dental fillings are from negligible to nondetectable, as opposed to people who have acute mercury poisoning. One thing proponents of this idea haven't explained to my satisfaction is why, with the prevalence of fillings these days, there is no epidemic of mercury poisoning symptoms following dental fillings. People would be connecting the dots very quickly if this were true.
  23. Thanks for the info! And how neat that you were a part of the research! I suspect a lot of us here have NE neuronal differences, but that there are many different flavors of NE dysregulation for each of us. One may have defficient transport gene, one may have too few presynaptic auto-receptors, and many have just a bad mixture of several otherwise "normal" genes. One common theory of "disorder" type illnesses is a handful of otherwise normal genes with enough loss (or gain) of function that, when added up together, tips the balance into an unhealthy condition. So it may not be just one gene causing a person to have POTS. I'm really hopeful that when genetic research tools get more advanced and widespread, the common genetic themes will emerge for those of us together in POTS land . (I already "know" I have inherited my condition from my old man).
  24. Hi Daniel - I can tell you are very determined by the fact you have already gotten a tilt test ordered despite family, doctors, and fatigue adding to your stress. That's really great! You are also trying to think a lot about this. In other words, you're a lot like me . If you do have to deal with POTS for a long time, you will realize that you can only extrapolate so far about what you think is going on without having more laboratory results - i.e. whether you are hyperadrenergic or hypo-, and what the prognosis is. It just takes time, a lot of time. As one of the "guys" here - I'll just put my TTT results - had a supine HR of 56 and a max orthostatic HR of 107. So the delta was around 50 BPM. BP was pretty well stable at 115/70. Did you know what your starting heart rate was? The change in rate is the most telling. But you also had a systolic drop around 20 mm Hg, which indicates orthostatic hypotension, which can occur in POTS too. Keep up the good work, and be patient!
  25. Hi Daniel - Not sure what to think. Is it truly a lower occurence among men, or is that just inferred from our small vista on internet message boards? I take epidemiology of poorly understood or non-specific disorders with a grain of salt. After all, the 'experts' say a majority of chronic syndromes resolve themselves over time, and are not that distressing. I am a guy. I have POTS, heart rate wise, and a number of non-specific symptoms that I have inherited from my father - so that makes two more males out there!
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