firewatcher

Please know that you are never alone as long as we are all here!!!!!!!! I am so sorry you are going through this. I have no solutions, only words of support and attempts at comfort. Do what you can, that is all you can do. This is a maddening, frustrating, impossible situation, but you WILL make it through! I believe that God never gives us more than we can handle. If you need to vent, vent! ((((((((((({{{{{{{{{{{{{{hug}}}}}}}}}}}}}})))))))))))))))

Whew, jury duty done. It was a long day, but the judge was actually surprisingly good about bathroom breaks. I now have a nasty headache and toes were numb all day, but neither of those are really out of the ordinary any more. My doc OK'd the dDAVP for today so I did not have to go like I normally do, I think that the polyuria is actually getting worse. As for the actual case, it was a disappointment for true justice, it all came down to semantics. We could only answer the question that was asked and we were given the definitions by which to make our decision. The only ones that won this one were the lawyers.

I don't actually have SAD, just (it's enough) a circadian rhythm problem. However, I find that sunlight is a huge trigger for me for headaches. The brighter the light and the longer I am in it, the more intense the headache and the worse I feel. I was using one of the ultra-bright lights in an attempt to push my circadian rhythm forward and came very close to full-blown anxiety. I have always slept better in the fall and winter and generally feel better emotionally. I guess that is reverse-SAD I just saw several posts about "depression" and wondered if it might be a messed up circadian response to the time change since we all seem hyper-sensitive to changes in brain chemistry.

Welcome! Your headaches sound like mine too. Not fun When I was on Klonopin, they were manageable, not gone, but manageable. Try keeping a headache diary, I kept a symptom diary when my crash started last year, and when I looked back six months later, I could not find a single day that did not mention a headache, the same headache...again and again. Then I tried to think back to when it started and found that I could not remember a time in the last 2 1/2 years when I did not have it! (think back to family events, vacations, etc. that you remember: "this would be more fun if I did not have this headache!") As to the excedrin, is it that or the caffeine? Try each component individually and see what helps: ibuprofen/tylenol, aspirin (blood thinner--are you dehydrated?) and caffeine. I tried 4 different migraine meds because the doctors convinced me this was a migraine (not, believe me I have migraines!) and none helped. My endo wanted me to get a cervical spine MRI to look for trauma/tissue damage, but the imaging center has not set it up yet. Good luck, I am right there with you!

Jump, I don't know yet. My PCP says that it is an indicator of chronic dehydration (possibly hypovolemia?) In my reading, I've come across many references to "chronic hypoxia" as the cause for an elevated red cell count: that means a chronic lack of oxygen to the brain and kidneys. I also have the low GFR, high creatinine and increased lung gas-exchange (diffusion capacity) that points to that. My chemistry panel comes close to someone living at high altitude. My one clue is that when I was on the dDAVP and clinically OVER-hydrated, those numbers came back to normal. Another theory is that since my cycles are all screwed up, I am not bleeding enough to drop the red cell count (that is why women have a lower reference interval than men.) That is one of the many questions that I have for Vandy. Maybe I can tell you in a week!

Some recent posts have made me wonder about something. We know that ANS dysfunction can screw with our circadian rhythms, so can it also make us more vulnerable to SAD (Seasonal Affective Disorder)? With the time change and less sunlight, it will mess with our natural brain chemistry; do we overreact to that too? Maybe it's just a temperature thing, I know my body has to work a lot harder just to stay warm. Just thinking.

Whine away, you are allowed when you feel like #@&*! I wish I could write something that would help . I truly feel your pain, I am desperately hoping to find a doctor who knows what they are looking at. It is extremely frustrating to have multiple doctors say they don't have a clue what is going on. Best of luck with your endocrinologist, maybe they can get it managed.

Jump, The one that has showed the most for me were the complete blood count (CBC with differential platelet) and Complete metabolic panel (14). It showed the consistently elevated red cell count and hematocrit (dehydration) and the screwy kidney function. My endocrinologists keep testing everything. I also had a lung function test done to rule out or confirm a previous diagnosis of asthma (I don't have it, it is just hard to breathe when your hr is 180+ ) If you are having menstrual issues, have your hormones tested, it is amazing what hormones can mess with!

Yup, I use one on a regular basis on the days I can't take the beta-blocker (allergy shots) and it is an eye opener! I have BIG spikes in HR in the morning 50+ bpm, but what is scary to me is how slow it gets when I am lying down (40-50 bpm.) Stairs will send me into the 140's easy. Night time is the best for me, I get much less variation. I wondered after I got my 24 hour Holter results if they were a true representation or not, and after using the monitor I know they are. Don't fret too much it is "normal" for "us."

Certainly!

I am keeping my trembling fingers crossed that this headache stays down, its been nasty in the afternoons! I am tempted to go ahead and take dDAVP so that I don't have the urination issues, I may call my Doc on that one.

Hello all, I was actually seated on a jury!!!!!! Apparently peeing every 45 minutes is NOT enough to be excused . The bailiff said that the judge was "very good" about that sort of thing and would be made aware of my condition. Sooooo, my bladder and I will see.

flop, I can't work because of the tremor. I am a commercial artist and I do a lot of finely detailed work, so this whole shaky thing is messing me up ! As long I just sit there, I should be OK. I think I'll be dismissed after the third trip to the bathroom within the first hour though, so I'm not too worried. I only get brainfog if I have to stand there, so there won't be a travesty of justice as long as I am seated.

Ernie, I wish I could say that I am surprised by your ex-doctor. I am developing a rather large chip on my shoulder about all this. I am fortunate in that the two doctors who actually have degrees in psychiatry and psychology were the ones who were saying that all this was not "in my head." I am hopeful that Vandy will do a blood volume assessment. My labs are all screwed up: elevated hematocrit and creatinine, 233% of predicted lung diffusion and very narrow pulse pressure (no one, not doctors or nurses can find a peripheral pulse in me and my heart rate plummets when they press the carotid to get my pulse there.) IF I am hypovolemic, it could explain a lot. I keep going over articles from Dr. Raj and Dr. Robertson about the blood volume issues and "the aldo-renin paradox" and my numbers don't look like anything in their studies. One week and I may have a couple answers...I hate waiting.

Thanks guys, I was so afraid of protracted withdrawal after everything I read on the web! It was not, and is not, easy; my head HURTS!!!!! I am hoping that they will dismiss me from jury duty since I have an appointment at Vandy in a week and can't serve for longer than this week. But if I can't work because of the tremor (since I have to come off the beta blocker) I might as well do my "civic duty."

Ernie, whooops! did the doctor apologize for thinking you were nuts? (when you were in a state of chronic shock) Is he still your doc? Did that show up on any blood work as anemia or high hemoglobin? Did it effect your kidney function?

Was it a stab in the dark by the doctor, or was your blood-work wonky too? Did you have narrow pulse pressure?

Well, I made it off the Klonopin. It took five weeks of super-gradual tapering, but I made it off! THe headache is back, like before, and the Inderal does not work as well. I have more shakiness, tingling and insomnia (there just seems to be more to think about now, I did not associate random thoughts to overexcitability.) I am hopeful that there will be a better medication for the headache. I also came off the Estratest and immediately (within a week) lost six pounds! Now my BP is wonky again: 121/101, 97/82, etc. One week to go till I leave for Vanderbilt, this one is going to be the hardest...coming off the Inderal, tachycardia here I come (this morning my HR went from 55 to 117 within the first minute of standing) . To top it off, I have jury duty

For those of you with confirmed low blood volume: what were your symptoms that caused your doctor to want to measure it? Was is a blood pressure thing? or were other test "off" too? What were your symptoms?

Brilliant! Accio fundraiser! If you advertise or just contact some of the fansites like Leaky Cauldron or Mugglenet, they may announce it for you and get a bigger crowd. Tie it into the new movie release next year and it will get a bigger draw.

My doc has stopped my beta-blocker at night because of bradycardia. My resting and awake HR was 40-50 bpm, so who knows what it was sleeping.?! I normally have supine bradycardia anyway I only get tachy when I stand or move.

I am sorry, I've been there too. I wonder if doctors need to take a psychiatric evaluation before they can become doctors? My husband and all his coworkers had to take one before his current employer would hire him and he has less ability to screw people up than a doctor! It seems like the good doctors are getting fewer and farther between. I hope you find someone whose knowledge and ability actually warrants that kind of ego.

TV makes it worse for me, I think it is the flash and motion. I find that as more programs are going hi-def that I can actually see the frames of motion and it does not seem as fluid, it looks jerky almost like a strobe-light effect and that has induced a migraine in me and will make me dizzy and nauseous. My eyes are also strained with anything that requires constant eye focus. On some computers, you can turn down the brightness or you could do what I do sometimes and wear sunglasses.

I was having a semi-heated discussion with my son's pediatrician about the concept of a diagnosis; he claims that a "diagnosis" is a poor concept of Western medicine that leads to pigeon-holing people and a lack of treating the whole person adequately. His concept is more Eastern or holistic, in that one body system has direct influence over or influences all the others unless there is a purely organic/physical problem (tumor, broken arm, etc.) and that a diagnosis hinders the treatment of the whole person. Has a "diagnosis" helped your treatment? or at least its recognition by other health professionals? Perhaps I am too Western in my search for a diagnosis, and I am just searching for validation that I am indeed sick (with something...maybe I have Fred in my head instead of Ami's Gilbert in her arm. ) Any opinions?

Bumping this up for Ken... ...sorry guys, I don't know how to add a link in the other thread.(?)