RE: The Perfect Storm

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, Welcome to this forum. I've never had a migraine. You have been through a lot. Many of us including myself have had doctors who don't listen. I suffer from a non productive cough which in my case tells that my oxygen saturation is lowering. I bought a $65 oximeter to test my self between 90 day check ups with my pumonologist. I do not use oxygen yet. Has your doctor given you anything for the cough or refered you to a pulmonologist. Even without going through what you have I had 1 doctor who resisted doing anything more for me because I was already dying. Well since losing him and having gall bladder surgery and other procedures I may still be dying but my quality of life is so much better. Anything you put on this board will be seriously looked at and hopefully addressed by one with the same or similar problems. Keep up the drive for better quality of life with your doctors.

Steve59 from WA IPF 2006

Reply-To: Breathe-Support To: Breathe-Support Subject: The "Perfect Storm"Date: Thu, 17 Apr 2008 05:49:50 -0000

One thing that I didn't mention earlier is that as a result of the stroke I had while fighting lymphoma, I now suffer from classic migraines. I can have 3 over 3 days and then go for months without one. What really really stinks is when I have a migraine during the middle of a cough attack. My migraines start by the visual aura followed by a state where I have a low grade headache *until* I cough. Then it is the most excruciatingly painful condition that you can imagine.Anyone else deal with this?Thanks,>> I am new to the this forum and have never posted before. I am hoping > to see if my issues sound familiar and if others are experiencing > what I am. I apologize up front for the coming long post.> > 14 years ago (I know its been a long time) I was diagnosed as having > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't > diagnosed until I was in the terminal stages with all my organs > failing. I spent a month on life support and had many many bad > things happen including a stroke, ARDS, septic shock, etc.. The list > is long. > > Somehow I experienced a miracle and survived this ordeal. Went thru > a traditional regiment of CHOP + Bleomycin for several rounds. I > went into complete remission after my 5th round. > > A year after this I was told that I had to have a Bone Marrow > Transplant to prevent my kind of lymphoma from coming back. So I > went ahead with this. Part of my treatment was total body > irradiation (TBI).> > So since then I have led a very normal life except for a couple of > things. I don't have the long capacity that I used to and I have > this incredible recurring cough. > > I was diagnosed about 7 year ago as having moderate restrictive lung > disease. Not a lot was done then. Given what I had gone through I > didn't pay much attention to this.> > The problems that I have is that A) when doing anything aerobic I run > out of air fairly quickly. Cycling is a huge sport where I live and > I have tried to ride at lunch with the semi-serious group. I can > keep up well for 4-5 miles but I simply run out of air. I have come > to live with this and move on at my own pace. The more annoying > problem is this cough. I get this recurring dry cough that can last > anywhere from 1 to 3 weeks. I am on week 3 of a cough right now. I > went to my doc at the beginning of this cycle to get the usual > narcotic cough syrup. I have since run out. I didn't sleep at all > last night and right now doesn't look promising for tonight. > > I am so sick of this cycle that I can scream. I hate the normal > routine of cough syrup but hate the lack of sleep even more. It > seems like I cough hard every 30 seconds or so. I get > embarrassed going to the doc when this cycle starts. Seems like with > all the prescription abuse going on they seem to think anyone who> shows up as often as I do must have a problem. I am epecially > annoyed with my current internal doc as I had to direct him to do > some additional pulmonary testing to confirm that something wasn't > right. > > If only they knew how much I HATE this cycle. It hurts all aspects of > my life. I simply am sick of coughing. > > I know that many people here are fighing much worse issues than I > am. I wish them the best.> > >