Saturday, January 19, 2008

The start of my attacks as documented by emails...

My attacks started in full on August 13, 2007 in the morning. I was not journaling then, but I did send out a number of detailed emails. I am not correcting spelling errors in this post. It is amusing to see my writing wax and wane as I get drugged, fatigued, and zoned out. All names are edited out. They paint a bleak picture... ____________________ To my wife. It started with some irony. I emailed her about doing a Halloween bike ride in Albuquerque in costume. This was sent in the morning when the attack was first going on. I never did the ride...(8/23/07) I AM AM AM doing this event. Day of the Tread Almost two months later, my wife found my original email and sent it back to me. It was funny and pathetic at the same time. I felt like sh*t and the last thing I wanted was being reminded of how I was slowly giving up the things I enjoyed, one at a time. i replied to her in October. (10/3/07) Yeah, I know. This looked like a fun event and the girls would have had a blast. I doubt I will be up to it. D ____________________ To my colleagues (8/14/07) I went to the ER yesterday from work. My blood sugar continued to drop and finally bottomed out at 57. We finally got it back up. Good news is that the CAT scan shows I still have a brain... Am very fatigued. I am staying home. If you need me, you can try this email address or my cell (xxx-yyyy) but no assurance I will be quick on the upswing. D ____________________ To my colleagues (8/16/07) I made it to Smith's (a local grocery store. D.) yesterday on the way to work where I ran out of steam. My wife took me home. I slept much of the day. Sorry for not checking in. My mind has been wandering. I took some strong sleeping pills last night and slept well. I am feeling better but am still weak. Will try to make it back in tomorrow. Am able to wobble around a bit. Am scheduled to see an ENT for the vertigo although the doctor and I doubt this is an ear problem. The hypoglycemia combined with my hypothyroidism is the main suspect. We are also looking at a metabolic connection. Can anyone recommend an Endocrinologist (B has). What baffles us is the more I eat the LOWER my glucose levels drop. We are looking at C-reactive protein levels now. I also am looking into a neurological possibility. I keep telling my wife she gets on my nerves! (Actually she has taken this whole in sickness and in health thing pretty well....) It is frustrating stumbling along like a drunk and having my mind work in slow motion. Sorry to be out. WIll have my cell phone although I expect another diazipam is in my immediate future... D ____________________ To a friend. You start to see a break down of thinking, more based on the drugs at this point (8/21/07) i see an ent next week. There isa possability this coul be meniere's disease although I hVE an MRI thursday. ____________________ An email to a colleague. Here, I am feeling better and think I am over it all. I also point out an increase in dizziness after I eat, a confirmed symptom even today (8/25/07) According to all of the tests I am fine. Blood is fine. CAT scan and MRI on my brain is fine. My ears are fine. I am suspecting an increase in insulin production after I eat. This is not the same as a diabetic insulin insensitivity...just the oppersite. I found an article in the NEJM that perfectly describes my symptoms in other long-term post gastric bypass patients. I am finely over this lasted 2 weeks. I still have a battery of tests to do. But my first hunch is the one I need to pursue...see an endochronologist. I need to go to occ med and try to go back to work today. I peter out at about 3pm so I might try 1/2 days for a week. D ____________________ To my friends. So far, according to every test I took so far I am fine. I am being sent to an Ear Nose and Throat doctor. While in the end they would also miss the subtle clues in my test results and misdiagnose me, I was and still am grateful my local doctor sent me. It was the audiologist tests that eventually sent me on the correct path. (8/28/07) I wanted to say thank you for your letters of concern and thoughts. I appologize for not replying more coherently earlier. I have been very out of it. I have been going through non-stop testing and exams and am too tired when I come home to read email. The drugs have been kicking me down pretty bad as well. First the good news. The brain CAT scans & MRI show no tumors, leasions, clots, plaque, MS, etc in my brain. The radiologist's quote on her report was "The patient's brain is unremarkable." Good news but did kind of hit the funny bone. Blood tests show normal or almost normal levels for everything (with one exception below). My thyroid levels are okay (I am on synthroid because I have 1/2 a thyroid gland), my pituitary gland is okay, normal metabolic screen, no heavy metals, slight anemia. The ENT is pretty sure I do not have Menier's disease. But he is going to spin and zap me next week to see my dizziness thresholds. He doubts an ear connection to this problem but will check it out anyway. So far, this has been a game of exclusion of conditions...I had a hearing exam and passed above normal. I was told that I am not allowed to pretend that I did not hear my wife when she asks me to take out the trash... It could still be neurological. I doubt it now personally. It does not explain the extreme rapid hypoglycemia. What is happening is a drastic drop in my blood glucose levels after I eat, especially simple carbs. I had two donuts right before my attack a few weeks ago. I have been trying to look for patterns and this one seems to be emerging. There is a condition where the pancreas secretes too much insulin after one eats. However, unlike a diabetic, I am NOT insulin intolerant. There are several conditions which could cause this. Tumors or cancer in the pancreas, or other altered morphology in the pancreas. I did find someone else that is a long-term post bypass patient report the almost exact symptoms. I tracked this down and found a few articles in the NEJM which described almost exactly what I am going through (not easy to read scientific articles while on several narcotics and antihistamines and hypoglycemic...). I am going to try to alter the order in which I eat my food and supplement with some Chromium. I need to get into an Endocrinologist that specializes in a metabolism disorders. There is one at UNM. I had a CAT scan of my pancreas yesterday and have yet to see the results. I suspect a biopsy is in my near future. Peanut butter. If I start acting loopy give me peanut butter. I need protein in my system to stabilize the glucose levels. I will keep a jar at work. I am functional but very, very tired. This attack kept coming back in waves for 2 weeks. I have never ever felt like this before (actually I felt basically nothing). My wife has been an angel in driving me around to doctors, the ER, keeping me awake when needed, etc. She deserves an upgrade from fries to onion rings the next time I treat her to Sonic. Hell, she is worth it. I hope to come back to work 1/2 time until next week. I am waiting for a call from my doctor. Please be patient with me when I do come back. I am still a little slow and "zone out" pretty easily. I forget things easily (last week I could not remember simple things like my full name, what year it is (1973?)...but I remember that all now). Everything happens for a reason. I do not know what the reason for this is (and may never know) but life is good to me. With much thanks, (Vertical) D ____________________ To my colleagues. I am still drugged out. (8/29/07) Well, no pancreatic cancer, increased islets, or tumors. Still high insulin production. My nurse practioner does not want to controdict my doctor so I am not sure when I will be back to work. Hopefully soon. I am tired but not in a fatigued sick way. I see my main doctor on Friday morning. In the meantime, go ahead and read INKHEART by Funke. Very good book so far (considering I can only read a few pages before I zone out) (By the way, I finally did finish the book and it was amazing. D) Hope to see everyone soon. D ____________________ To a friend on an article about motorcycles. Here I start worrying about ever getting on any bike, again. Chances are I will not ride for a while, even now. Also I am back to work and note that it is almost a month between this email and the last one. I was just too exhausted after getting home. I was still walking and driving in late september. (9/26/07) Well, considering I am having a hard enough time even WALKING, getting a bike is starting to fall off of the radar. But for now, maybe an update to the Hurt report on motocycle crash causes: Motorcycle USA I hope you are doing well and enjoying your new job. Miss you! D ____________________ To my friends and colleagues. My stubborn nature to accept my frailty shines through. (10/24/07) Well, once again my wife has shown me the evil of my stubborn ways. She pointed out something clearly obvious to her but lost in my logical but faulty analysis of risk. In other words, she called me a dope...(I hate it when she calls me a dope and ends up being right...) My attacks have a clear pattern of being set off by loud, pulsating noises and flashing lights. Like those of, say, a fire alarm... So while I eagerly say, Sure, I can walk down the stairs if needed, the reality might be that the alarm itself might incapacitate me. In which case you have a choice of sacrificing me (I can think of plenty of people that wish to burn me in effigy) or treat me as luggage and drag me down the stairs. We will see what happens if I happen to be present during an alarm. Please forward this to Da as she is the safety officer. Thanks, D ____________________ To my wife’s cousin. He is a pulmonologist in Texas. Here you see concern about my liver. You also see an original diagnosis of Basilar Migraines which turns out to be partially correct. The low IGF-1 sets off a long journey into seeing if I have a pituitary problem resulting in low Human Growth Factor. This turns out to be a red herring as we would find out at the Cleveland Clinic in January of 2008. (11/5/07) R, I am trying to get into the Mayo Clinic in Minn In a nut shell, here is what is going on: Vertigo: Menniere's has been ruled out. An audioneurological test showed my right inner ear is working at 50% compared to my left. My left over compensates and I fall to the left. The problem is that no one is sure if this is truely an ear problem or a brain problem. My ENT prescribed a low dosage of nortryptaline (25mg). My neurologist is suspecting basilar migraines. No triggers have been identified. The nortryptaline is being prescribed as a preventive drug. I had a terrible reaction to compazine. Triptans are to be avoided for basilar migraines. I was on Midrin for a migraine buster. It did not work. And because of the tylenol component in midrin, I went off of it. I saw an endocronologist also. I have a constant bout with hypoglycemia. I am not diebetic. My fasting glucose is about 55-65. My fasting insulin is normal as is cortisol. What is low is my IGF-1 at 72. We immediately suspected human growth hormone deficiency. The insulin tolerance test is difficult at best and not performed in most hospitals in NM. UNM performs it but since I need to travel, what the hell. I hear Minnesota is wonderful in the wintertime! My liver enzymes were up (L sent you the numbers). I had them retested a few weeks later and they doubled. I freaked and called my primary. IGF-1 is produced in the liver and low levels can also indicate liver disease. I had a fatty liver before my weight loss. A current CAT scan of my liver indicates a crystalline where before there was fat. I had brain CAT and contrast MRI. No abnormalities. However, the resolutions were not high enough to locate microtumors on the pituitary (major cause for HGF Deficiency). I have been anemic for years. I am on procrit and my latest hemoglobin was about 14. I also tend to spill some protein in the urine. Blood work shows few abnormalities. slightly high sodium, slightly low potassium. Low vit. D. normal vit B12. normal WBC. normal CRP and c peptide. An abdominal CAT scan showed no abnormalities. A small cyst was seen on my kidney but no one seems alarmed by that. No insulinomas. No pancreatic cancer or tumors. So, the general concensus is that the hormonal levels are triggering the migraine. However, I have not had a formal diagnosis on ANYTHING as of yet. D ____________________ The longest email of all. By this time (end of October) I had moved to a wheelchair, was stuttering and shaking like a leaf, was wearing my sunglasses almost full-time inside, and had given up driving. This was me at my lowest ever in my life. (10/21/07) Please feel free to forward to anyone you wish. And appologies for the length of this "tome." ___ October 21, 2007 Well, the rollercoaster ride is not over. It just took some unexpected turns. Last week L, C, E, and I flew to Florida to attend my cousin's wedding. He looked scared out of his mind when the ceremony began but he quickly recovered. His new bride and her family are charming. The trip made us nervous. It has been a rough few weeks since I last wrote. We are still screwing around for a definitive diagnosis. My neurologist is strongly hinting at a call of migraines call Basilary Migraines. These attacks occur in the brain stem which controls autonomous and reflex functions. They are most common in women, and not in all women. The classes that are most prone to these attacks are pubescent girls and menopausal women. Middle age men are usually not hit. However the symptoms seem to follow mine very closely. Vertigo, double-vision, weakness, headaches in the back of the head (although these attacks can occur without headaches), slurred speech, amnesia (don't believe Hollywood. Normal amnesia is basically short-term memory loss), automatic behavior, ringing in the ears, extreme mood swings, anxiety, misinterpretation of what one sees, irregular body movement. Yup, that is a big check mark after each of these. The joke at home is we never know which D we will see today. Maybe today is Stroke-like D. Or Turrets-D (without the cursing…this IS a family show, after all), or Parkinson's D, or Epileptic-D, or Normal-D, or Sleeping-D, or Paranoid-D. Never a dull moment. Migraines usually have triggers. We have not figured mine out. I had been placed on a very low dose of nortriptyline. This drug, traditionally used as an antidepressant, can in low dosages help prevent various migraine attacks. I had just started it about a week before the trip. And 2 days before the trip I ended up with a serious problem. I appeared to be a full-blown Parkinson's patient. Extreme body shakes, loud, syncopated stuttering, head Bbing, nervous ticks…the works. What was strange was I actually did not feel that bad. I just looked like hell and scared the crap out of everyone. One colleague at work said that she could just feel the energy pour out of me into my surroundings. It was surreal. I had a difficult time speaking. By the end of the day I was exhausted just from the tremors. I had read and also spoke to someone at work that this could happen from the drug I was taking after about a week. The shakes should subside in a few days. L and I fretted. What about Florida? We decided, what the hell. I worked 1/2 a day and we were scheduled for the red-eye into Tampa. We hit massive traffic on the way to the airport due to several wrecks. We basically made it to the gate as boarding began. We made the decision to take a wheelchair along with us. At security we ran into some minor problems. TSA made me take out my CPAP (new regulations now require that since August). To make matters worse, the CPAP tested positive for nitrates ( i.e., explosives). So everything went back through x-ray again. I had to get out of the chair and get patted down. They went over my wheelchair. Normally I would have taken that in stride. While I was pretty much symptom-free all day, I broke down in security. The shakes, the stuttering, the head-B. Yup, I was loopy. And I stayed that way through a lot of the weekend. To make matters worse, the cabin pressure change on landing killed me and sent me into a full-blown vertigo attack. On the second flight things got worse. A woman behind me opened the luggage compartment above me and dropped my cane SMACK on my head, She felt terrible. Then in trying to get off of the plane I fell over backwards onto the seats and hurt my back on the armrest. Things were not starting off too well… When I finally got to see my family there was a combination of shakes and the LEAN to the left. The look on everyone's faces really got to me. It was a "Holy Crap Are You Dying?" look. The weekend was a blur. C and E did a great job in pushing me around in the chair and just plain taking care of me. L forced me to take naps and ran shotgun. I could not have made it without their help. At the reception a combination of the loudness of the band (they were very good), the chaos, the flashing lights of the photographers, and the lateness of the event pushed me over the edge. I remember getting up to leave the reception early. Then nothing until I was in the hall outside the hotel room. L tells me she half carried me out of the hall and that Leslie helped get me into the wheelchair. To make matters worse, we had to be on the shuttle for the airport at 5am. Man, we are dumb! So, before I go any further, apologies to all of my family that I never had a chance to say good-bye to. I am glad I did go but also regret it as well. It was hard on the girls (although they all say sit down, shut up, hold tight, here we GO!). A few days later I was at my Endocrinologist's office. I was getting results of extensive blood work I had done before I left for Florida. We were expecting a few possible things. One was a low fasting blood glucose accompanied by a high dose of insulin. This would be evident of either a pancreatic problem (such as insulinomas) or "dumping syndrome" which could be a result from my weight loss surgery. Another suspect was low testosterone levels. This could act as a trigger for the migraines. No. While my fasting blood glucose was low (63) my insulin levels were normal at 6. Insulin was not the problem. This pretty much ruled out my weight loss surgery. Testosterone was slightly HIGH. That made me want to yell out, "Who's ya Daddy?" in my best Barry White baritone that I could manage. I did fail one test. My IGF-1 was very low. IGF-1 is produced in the liver. What is special about IGF-1 is that is used as an indicator for another hormone. If IGF-1 is low, that hormone is usually low as well. The hormone in question? Human Growth Factor. It is produced in the pituitary gland located right under the brain. As a child, low amounts of HGF leads to dwarfism. High amounts lead to gigantism. I had normal amounts while I was growing (I am 6' 1"). In adults, HGF regulates muscle mass, energy levels, and also acts in tandem with insulin and cortisol. A low HGF would lead to hypoglycemia. A misbalance in hormones could act as trigger to my Basilary Migraine attack (although I have not seen anyone report it in my limited searching and assuming that is what I have). My endocrinologist has been one of the most thorough doctor I have ever seen. She took a complete and extremely detailed family history. She poured through all of medicines and supplements. She ordered a battery of tests and found this out (I also have some elevated liver enzymes and low vitamin D levels, neither of which explain what I am going through. Indeed the liver enzymes might be due to the meds I am on). The bad news is that she cannot fully diagnose or treat me. The treatment for HGF deficiency is injections in the muscle with synthetic HGF which is very expensive. And the problem is that we have not actually tested HGF levels. We tested levels of a related enzyme, IGF-1. The actual test is quite complex. I have to be hospitalized. I am injected with high levels of insulin and brought into hypoglycemia. My glucose levels as well as the levels of cortisol, IGF-1, and HGF are measured over time. The test is risky. I could pass out, go into seizures, and even possible coma. Not fun. And not a test that is conducted at most hospitals. To make matters more confusing, I present only one symptom of low HGF: hypoglycemia. Other symptoms that I do not possess include weakness, low stamina (yes now, but no earlier considering a triathlon and three Century bike races as well as weight lifting), extreme depression, and unexplained weight gain. Also the usual cause of low HGF is tumors on the pituitary gland. No tumors were seen in my CAT scan or MRI (although I am not sure of the resolution of the scans. These tumors traditionally are very small, about the size of the period at the end of this sentence.) While this possible diagnosis does explain some symptoms, it may not be all encompassing. My endocrinologist wants me to check into a well-known research hospital. University of New Mexico hospital in Albuquerque is a possibility. However, I am looking closely at other options out of state. I conferred with my primary care doctor and we will be discussing options this week. I also need to work with my insurance company. So, I am entering my ninth week of this crap. I have no definitive answer for my neurological and vertigo attacks (we suspect Basilary Migraine but it has not been specifically diagnosed that way.) We do not know what is causing the hypoglycemia (although we are suspecting low HGF). I wanted to close by saying thank you to all of you that have been sending me love and support. And prayers. We are all a little scared but no one said life was easy. You know me; I do not turn away from a challenge. I am grateful to my wife and wonderful daughters for helping me. I am not used to receiving help and being weak. Much love to all and stay tuned to the station. The soap opera is not quite over, yet! D. ____________________ There were several replies back and forth. Here was one to a friend. I was scheduled for the Mayo Clinic in Minnesota. This eventually fell through. But, like I always say, “Things happen for a reason.” Mayo falling through lead me to the Cleveland Clinic where I eventually was diagnosed and treated properly. (11/07/07) A quick responce and I will try to get a longer one out later today or tomorrow... We have NO diagnosis. We keep hitting walls and are steered in new directions. I do NOT have either insulinoma or "dumping syndrome" as originally though. My fasting insulin and cortisol are normal although my fasting glucose is in the fifties. Not good. What was off was IGF-1 or insulin-like growth factor 1. This is made in the liver. It was very low. This points to two possible places for a problem. It could be human growth hormone deficiency (made in the pituitary gland right underneath the brain) or certain liver disorders. To top it off, my liver metabolic enzymes are up and have doubled in a few weeks. It could be medicine doing that or something else. Both conditions could lead to hypoglycemia. The liver is serious (potentially) and I am see a doctor tomorrow to discuss doing an MRI of the liver taken by inserting a tube into my stomach. Yuch... My balance is off most likely due to something called basilary migraines. They suck. Again, no definitive diagnosis but I do see a clear fit of my symptoms to this condition. No reason as to why they have hit hard. I am in a wheelchair for most of the day. I can walk but each step is a conscious effort and I get exhausted. I also surrendored my truck keys. I take the bus to work. I am scheduled to go into the Mayo Clinic in February but we are trying to bump that up. L, the girls, and I do get a f bit frustrated but you know me. I do not give up easily. I am driving the doctors a little nuts because I am coming in after reading the medical literature and asking very specific question. Of course, I am not technical.... Hey, tell you neighbor I say hello. I LOVE Hammergel. It is great stuff. And if he has any size medium Hammergel Tee-shirts (for the poor cripeled triathlete..snif snif sob!) then I would gladly take them off of his hands Hey, don't worry. Life is good. As the Black Knight would say, it's a meer flesh wound! Take care, D ____________________ From my wife’s cousin, the pulmonologist. (11/15/07) Dear D and L: Thanks for filling in the blanks with your email D. That help me put your elevated liver enzymes into perspective. Great news on the liver. The liver can regenerate itself, which is a plus. Most other organs can't. Sounds like he is not out of the woods yet. Sounds like the doctors have made an effort to rule out most cancers (I guess there is still a question about the pituitary). But, the walking funny can be explained by an inner ear dysfunction. Between the hypoglycemia and the migraines and the hypertension he is still not well by any means. Even thought the liver enzyme are better, it sounds like there is achronic issue with the liver (fatty vs crystalline). I have not heard the term crystalline liver before. Cirrhosis and fatty liver are fairly common descriptors. Maybe the the Mayo clinic folks can shed some light. R And my response back to him. (11/16/07) We are confident that the elevated liver enzymes are from an allergic reaction to compazine. There is a clear, documented inner ear problem. The issue is there are one of three possabilities: 1. It is in the inner ear 2. It is in the nerves that relay the messages from the ear to the brain. 3. It is in the brain not interpretting the signal accurately Low HGF actually explains the hypoglycemia (with normal cortisol and insulin levels) and the vertigo. It could also act as a trigger for basilary migraines. However, there are some clear marker symptoms of low HGF that I am not displaying (extreme fatigue, deep depression, etc.) So, we are guessing. My liver was fatty in 2002. No sign of cerosis but some indications of previous fatty deposits. I seriously doubt that the liver is the original factor and the others are comorbidities. so, on another note... SEND PICTURES OF THE KIDS!!! With love to you, T, and the kidos... D ____________________ To my wife. We are still trying to get in the Mayo Clinic and it looks like we will succeed. (12/3/07) I was told it should be decided upon in the next 72 hours and it looks like a go. 10 visits until March 31. Not final, can still fall through. The UHC case worker was blown away on the case! I doubt she can contribute anything, though. D ____________________ To friends and family. At this point, tests and doctors were pointing towards possible brain surgery for a pituitary problem. I found this article on a really bad case of hospital brain surgery screw-ups. (12/1/07) Why D does not just want to go ANYWHERE to have brain surgery: ...but I bet they are IN NETWORK for United Health Care... The Article D ____________________ To a friend. Here I am still trying to get into Mayo Clinic but I also see that it will probably fall through. At this point, we have given up on neurologists and are focusing on pituitary disorders. I find that Oregon Health and Sciences University, OHSU, has a major pituitary center. They are top notch and I actually get an appointment that I end up canceling because of my trip to the Cleveland Clinic. OHSU would have been a fantastic choice but would have been a bust. The problem is not in my pituitary.... (12/4/07) Mayo is still our first choice. Should find out soon if UHC will pay for it. We are looking through the UHC database to see where we could go. The problem is we are not sure what is wrong, still. Clinical tests point right at my pituitary. Radiology is inconclusive. Symptoms kinda fit but not quite. I give it 85% that it is my pituitary but that leaves 15% of "I dunno?" So, for now, we are looking for pituitary experts and centers of excellence. OHSU is at the top of the list and UHC will pay for the medical there (out of pocket for travel but I can declare those on taxes). Sleep on it. Like I said, I have NO dates set up yet. I promise as soon as I know, you will. Many thanks, D ____________________ And finally: I made it to the Cleveland Clinic. L and I flew in on January 9, 2008. As it turns out, my visit to the endocronologist on Jan. 10 gave me good news that still shook me. No pituitary problems. On Jan. 11 I saw the neurologist who specialized in balance disorders. I will post more on his visit later but in a nutshell, he has me (literally) on the straight and narrow. The trip saved my life and the live’s of my family. It is amazing to take this trip back through time. (1/10/08) I see Dr. Pituitary this afternoon and Dr. Vertigo tomorrow. Long but boring trip in. D