dano2718

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.

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

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.

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.

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

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.

Hi Niki - It sounds pretty frustrating, but I can identify with some of your symptoms. Here's my reply:

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.

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.

(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!

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

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.

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.

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!

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.