new pain management plan 2-23-10

I had an appointment with Dr. Schakel today and we discussed the ineffectiveness of the current pain management plan. We agreed that the goal of the plan was not necessarily to eliminate all pain, but to reduce the pain to a level where I can continue walking, working, and doing the activities that I enjoy. If I need to use a cane or decrease the number of steps I take because of pain, I would consider that unsuccessful.

He prescribed 4" x 6" Lidoderm 5% patches applied to painful areas for 12 hours daily. I will start using Neurontin gel again applied to the areas of neuropathic pain and parathesia. He also tripled my dose of MS Contin to 30 mg three times daily, and maintained my dose of Oxycodone at 5-10 mg daily. 45 minutes after my first increased dose of MS Contin and I felt a wave of relief. I could put a shoe on my left foot and walk without a cane for the first time in a week. I am able to walk around my house and could probably walk an hour or more. What a difference a proper plan is. I feel somewhat normal again. This should greatly reduce my stress level knowing I am more self-sufficient. My current pain level is 4.

It has been suggested lately that my seizures could be caused almost exclusively by the physical pain I have lived with for years. If so, masking the pain by following the above plan should help. Curing the condition would be an ultimate goal, but I think that is unlikely. For now, my team is working to slow the progression and manage the symptoms that affect my daily living.

I look forward to my last seizure. Shortening the time until that happens is now my focus.

today

I woke twice during the night from pain. I used relaxation response to minimize the pain, and was able to get back to sleep. This morning had a pain level of 8 with spikes higher. I took 15 mg morphine, 100 mg Tramadol, 5 mg of Oxycodone, and 1000 mg of acetaminophen again and 45 minutes later was down to 7. At least I could get out of bed and shower, though it's painful. I won't do my walk again today. I think that's 4 consecutive days this week. Not good. I am sitting at the table now where I will spend much of the day. I continue having Lucy run around the house to retrieve things for me. This morning it was my checkbook from the other room to write a check for her school activity. I don't like to put that burden on her but just can't take those steps. Conservation is key, as is planning ahead.

I plan on calling Dr. Schakel today and sharing my current status on this new main management plan.

today's notes

With the strong and sharp pains I have today, I will not be walking now for the third day in a row. I miss it terribly and my mood reflects that. I feel confined to the house, trapped really, which is a strong reminder of the seizure condition I have. I really need to clear my head somehow.

Pain level 8+ when I woke up, 7+ now at 9:30. I took 15 mg Morphine, 100 mg Tramadol, 5 mg of Oxycodone, and 1000 mg of acetaminophen this morning per the current plan. Tramadol and acetaminophen will continue every 6 hours and Morphine and Oxycodone again in the evening. I am suffering now. My lifestyle is affected. I need to plan my house life to minimize the number of steps I take. Mostly I am necessarily stationary through the day.

pain level

Yesterday and today my pain level has been around 7 all day, which prevented me from my daily walks with mom. I use these walks not only for the exercise, but to help clear my head and reduce stress. My pain level this morning was 8+ and I had to stay in bed until the narcotics brought it down a little. My day was much more than uncomfortable.

pain level is back up

Starting last Saturday, my pain level had increased to 7 and unmedicated has remained around 7.

I saw Dr. Schakel on Wednesday and the current plan is to stay on a low level base of 15 mg MS Contin BID (twice daily) and 5-10 mg daily of Oxycodone if the pain is still unmanageable. This is quite a bit less then I had been taking last fall. We will see if this will be enough to keep me walking and active.

I see Dr. Schakel in 3 weeks for a reassessment.

short status

My LV continues to be in remission. My sledding injury is almost completely healed. My seizures continue 4-6 daily.

notes on seizures

I was seen by Dr. Miguel Fiol, a top neurologist in the Minneapolis/St. Paul area on December 17 and he confirmed the diagnosis of Non-Epileptic Seizure Disorder. He, too, expects the seizures will diminish in severity and number as my stress level comes down. I am now working with 2 therapists and a psychiatrist specifically targeting my stress and how to diminish it. The catch-22 is that much of my stress is now brought on by the seizures and related issues.

I now wear a helmet nearly all the time and have in place most of what I need to function with the seizures. On my helmet now is my name and instructions for others should they find me unconscious and unresponsive. This helps to give me more independence. I have many friends that have offered to give me rides to appointments or the grocery store, etc.

I am back singing in men's choir and have found other sources of joy that I have incorporated into my daily living. I decided that Caribou Coffee's mocha will get me through this disorder and that has now become a daily routine. I have also taken up reading, which is not something I have done regularly in the past. I find reading very relaxing.

For now, I continue staying away from my work environment. I miss the daily work routine and being around work friends, but know that I can't work with these seizures. I can't drive to work appointments and can't talk to customers on the phone. Seizing during a work conversation is not acceptable. I have filed for long term disability insurance coverage should this condition keep me away from work for more than 90 days.

Non-epileptic Seizure Disorder Diagnosis

I had a fainting spell a week ago last Saturday morning at men's choir rehearsal and then fainted the Wednesday night after waking from a dream. Also the following Tuesday while lying in bed an hour before bedtime while examining a wound from one of my Heparin injection sites and then a fourth time at the doctor's office Thursday after my appointment to talk about it and went by ambulance to the Fairview-Southdale ER where, after many tests, I was discharged and told to get in to see a neurologist as soon as possible. Kalyn and I called around all day Friday and couldn't get in until the 17th. I fainted (some medical professionals call it having seizures or spells) a total of 15 times Friday including sitting in the car, standing in a store, and twice at work (once standing). We decided to go to the Fairview-University ER in the hopes of being admitted until we could get this figured out. I was now having an incredibly frightening set of medical circumstances. I have now seized from the standing position 7 times, many while sitting, and the rest while lying down. Many of these have been in public. I seized twice at work Friday morning where I was told by my boss and the majority owner of the company not to come back until this was figured out. Understandably, they can't have me seizing at work.

I was finally admitted to the hospital late Friday night/early Saturday morning. While undergoing testing, I seized 6 times Saturday, 8 times Sunday and 11 times Monday. Saturday's EKG was unremarkable as was my head and spine CT scan. Sunday and Monday I was being recorded 24/7 with video and audio while also recording my electrical brain activity through a continuous EEG. I was diagnosed late Monday morning with the condition Non-Epileptic Seizures. This condition will likely leave as suddenly as it came on, and it has no known cause or cure. The diagnosis is made by eliminating any electrical and medical causes for the seizures. When those are eliminated, this is the diagnosis by default. Though there is no real "cause", stress seems to increase the likelihood of their presence and severity, and for me drug interaction has not been ruled out as a contributing factor as well. I have a follow up with a Fairview neurologist, Dr. Fiol Thursday morning and at that point hope to learn more about the condition, its treatment, and how I can continue living my life with minimal interruption. I will follow up with my psychiatrist and therapist as well. I need to check into short and long-term disability policies at work in case I cannot work at 100% for an extended period of time.

From what I have been told by Kalyn, my seizures come on very suddenly, my body goes completely limp and it looks like I just go to sleep for a while. Sometimes I mumble, sometimes my lower lip quivers and my limbs move around at random. During the seizure, my eyes open a bit as I look around. Right before I come to completely, I thrash around and become VERY scared and disoriented. I look around trying to figure out where I am and why I am there. It takes a minute or 2 for me to mentally process and work through what is going on, who is with me, and finally conclude that I have just finished a seizure and can relax. I have no memory of the seizure or what happened starting a few minutes just before it commenced. During the first few dozen seizures, I was brought out of them with a sternum rub, which uses pain to wake a person up and bring them back. We know now that staying unconscious is causing no damage to me or others and I am allowed to come out of them under my own power. They usually last 10 minutes or so, but have ranged from 5 to 35 minutes.

That's the biggest medical news that has hit me lately. I also bruised a left rib December 2 and I still wear a brace for that. That injury gives me level 6-8 pain and is treated with 10-40 mg Oxycodone every 4-6 hours PRN. That was bruised during a wrestling practice at our house where an ex-wrestler coworker of mine was showing Lucy some moves and expanding her wrestling repertoire. Kalyn and I were being used as a demonstration and my chest came down on top of Kalyn's pelvic bone and I heard a crunch. In addition to all this, I also have ringing in both my ears and was told last Wednesday that I have a 10 decibel hearing loss in my left ear. This loss is likely permanent and is due to Otosclerosis. It will likely get worse as I get older. That news hit me exceedingly hard because, as a singer and serious music enthusiast, my hearing is tremendously important to me.

My LV continues to be mostly dormant for now, thankfully. If I was in the midst of a LV flare up at this point, handling it on an emotional front would be especially challenging. I will be seeking additional professional mental health support so I don't slide back into familiar depressive habits. I do have a great small group of close family and friends that I talk to continuously throughout the day for their support.

For now, I am living hour by hour. There are some living changes that we figured out right away, like I can't drive, which is a restriction placed on my by the University doctors. I also need to sit while showering and can't take a bath, which is a drowning risk. My new mantra is, "if I seize right now, would I and others around me be safe?" If the answer is no, I need to make a change. I spend very little time alone now, I can't cook or be around boiling water or hot pans, I rarely stand for significant time periods and I walk as little as possible, even around my house. The subject of wearing a helmet has already come up and, during a seizure at the hospital, I hit my head hard enough that they ordered a head CT scan to rule out internal injuries. As the first day out of the hospital has progressed, it is starting to sound like a better and better idea. That may allow me to travel in public and walk and stand while limiting my head injury risk. I hope I am able to get past the "self image" issue enough to be safe. I have fallen enough now that it's starting to make sense logically, though my social sense is still struggling.

since hospital stay

Since I was in the hospital last week, I continue to have a cough. It's a small productive cough every 5-10 minutes. It's not terribly troublesome except that I sing in a men's coir that is recording a CD this Saturday. Coughing while we record would be a problem.

The strange spreading parasthesia problem from last week has subsided and all but disappeared.

I continue taking the course of Levaquin, the antibiotic I am on for the sinus infection. I have about a week left.

I saw Dr. Abraham on Wednesday about 3 symptoms: the ringing in my ears, my nausea which has been ongoing for a month or so, and the cough. He said the ringing in my ears might come and go on its own and call back in a month if I still have it. He also said the cough was from my sinus draining. He had no good ideas about what was causing the nausea, but prescribed 2 medications to combat it. One was Zantac, twice a day, the other had in interaction with Lyrica, which I started (in addition to Remeron) for treatment of depression instead of Wellbutrin and Trazadone. My nausea has decreased to a point where I can eat full meals now, though my weight is still decreasing. I am at 137.4 this morning, the lowest I have been in many years. I will continue to watch my weight closely, but eating full meals should help considerably.

If my nausea stays down, I will add NATTO-K back into my plan.

I still haven't seen the Winstrol (Stanozolol) I ordered. I will continue checking on it and start taking it when it comes in.

my hospital stay last week

I came down with a headache and low grade fever last Monday afternoon. I had my mom drive me to the Urgent Care to rule out flu and possible H1N1. After taking my history, the doctor at the Urgent Care was nervous about possible meningitis so they sent me to the ER where they tested for that and a myriad of other possibilities as well. Blood work, urinalysis, head CT scan, chest X-ray, and lumbar puncture (LP) were all performed in the ER, while mom and Kalyn stood by. They were nervous about doing a LP because I was taking Lovenox injections, which could potentially cause clotting problems which could lead to other complications with a puncture in my spinal cord. But since I felt sick and thus didn't do my injections that morning or the night before, I was out of the 24 hour window and they could safely proceed. We were very relieved to see the spinal fluid come out clear and colorless, indicating no meningitis.

Apparently there is a sinus cavity straight back from the bridge of your nose about 3-4 inches called the sphenoid sinus and mine was discovered infected from the head CT scan. Additionally, I was severely dehydrated due to lack of adequate drinking because of this nausea I have felt for about a month now. I was admitted and administered lots of IV fluids and several rounds of 2 different strong IV antibiotics over Tuesday and Wednesday. I was released Wednesday afternoon. I am still on strong oral antibiotics for 2 weeks to make sure it's completely gone. Thrush is now a strong possibility due to the lack of "good bacteria" so we are watching for that.

My weight is way down because it's been difficult to eat with this nausea which has been around way too long. I need to see a doctor and figure out why. I thought it was from decreasing my doses of Morphine, but I have been at this same dose for more than a week and was given a lot more in the hospital to help ease the headache pain and didn't get any nausea relief. I have lost about 10% of my body weight and was at 138.4 lbs this morning. My goal weight range is 150-155 where I have been since this last February. By the way, after discussion with my pain doctor while I was hospitalized, I plan on staying at this Morphine dose until after taking the full course of this antibiotic. I am at 60 mg daily now. My pain level is now back to 4-5 where it is normally.

I do have a strange symptom which started after I got home from the hospital: the parasthesia in my feet (tingling and numbness) will intensify and spread and affect everything from the knee down. Sometimes it affects both feet, sometimes just one. It's really painful and I can't walk because it affects the bottom of my feet as well. Thankfully it only lasts for 10-15 minutes, and then it just fades away as suddenly as it comes on. Perhaps a side effect of the antibiotic? Not sure. Friday and Saturday it happened 6 times a day or so, yesterday once or twice.

nausea

After both last Wednesday and Saturday, the morning of the second day after my dose decrease found me incredibly nauseated. Today is the second day after my Wednesday dose decrease and this morning I was very nauseated. I almost headed to the bathroom to sit by the toilet in case I had to vomit. I took some Tums before getting out of bed and by 10:00 am it started to feel better. I expected the nausea this morning so I was able to handle it better emotionally.

My pain level has increased at times. Last night I had times at a 6-7, mostly just before and at bedtime. I didn't treat it. I expect that it may get worse in the future as my Morphine doses continue to decrease. I am on 90 mg daily now, half of what I was a month or so ago. On Saturday I decrease to 75 mg. The process continues...

I have noticed a ringing in my ears lately, worse in my left ear but affects both. Today is worse than other days. I am not sure if it's related to anything I am doing but wanted to note it here.

11-2-09

On Saturday I decreased my Morphine dose another 15 mg at night to 105 mg daily. No or very little nausea Saturday or Sunday. This morning, I felt like I was on the verge of puking all morning. Around noon it started to improve and it's mostly better this afternoon. I could have tried taking Percocet to see if that would eliminate the nausea but didn't bring any to work. If the nausea is from withdrawal, that should bring relief within an hour. That would have been a good test to see if that's what is causing it. I will put some in my pill box tonight and carry it with me.

Maybe it's worst a couple days after a Morphine dose decrease? Since I was better this weekend, and way worse this morning, I tend to think it's not the NATTO-K.

I know I get nauseated when I am really short on sleep but I have been getting nearly as much as I usually need so I don't think that's the cause.

At this rate of Morphine decrease, I will be off it completely on Wednesday before Thanksgiving. That will be something for which to be very thankful.

I did notice on Sunday that my pain level came up in the 4-6 range. I will keep an eye on that. I did not take any Percocet.

Morphine

I started tapering my Morphine use 2 days ago, cutting out my midday dose of 30 mg. I now am on 60 mg BID, 120 mg total. I have been as high as 180 mg daily. I have been experiencing heavy nausea since then, which is one of the reported withdrawal effects. I have my eye on the prize of taking none which should be achievable in 26 more days with a moderate taper. We will see how it goes. I drop 15 mg on Saturday and plan on removing 15 mg every Wednesday and Saturday as long as I can manage the withdrawal.

I do not feel any cravings to go back to a higher dose or have some right now. I have heard the cravings are usually worse in the first 24-72 hours, but can last for years. So far, I haven't noticed any at all.

My pain levels since Wednesday and prior have been 3-4 without any Percocet. I hope to not need any during this time period. My parasthesia is still always present, though is not troublesome. Constant and bothersome yes, but not a big issue.

I started NATTO-K on Thursday morning. 1 tablet TID on an empty stomach. Empty stomach has not been a problem since I don't have an appetite. I have not noticed a major difference, but am in a remission state right now so I don't know what difference it could make. I will take it for a month and see. At $56 a month, it's a little expensive for me, but if this is the ultimate fix, it will be worth it.

Dr. visit yesterday

I saw Dr. Andy Schakel yesterday for a med recheck. We discussed that my Percocet use lately has been minimal and that I have slowly increased my Neurontin dose to 1200 mg TID, 3600 mg total. I continue using the Neurontin gel BID as well and, since I have no active ulcers, have stopped using Morphine gel.

I discussed a possible reason for my sexual dysfunction and, as a test, I will be slowly tapering my dose of Morphine by 30 mg yesterday, and 15 mg every 3-4 days after, watching for signs of withdrawal. Today I am on 60 mg BID, 120 mg total. It is my goal to be off Morphine and hopefully not to have to supplement with Percocet and diminish or even eliminate this problem.

I am presently still experiencing some depressive symptoms, though they are improving. I started Wellbutrin 12 days ago, 100 mg BID and a week later increased to 200 mg in the morning and 100 mg at night. I supplement this with 150 mg of Trazadone at night. I have a side effect that started the day after I started Wellbutrin: excruciating joint pain at night. These pains have been 9-10 level pain. I wake up during the night from this pain and experience it in the morning as well. It spread daily, starting in my shoulder one night, then the shoulder and elbow the next. Now it's every joint in my body except my neck. Once I get up and move around, the pain fades to none, and I haven't treated it pharmaceutically. I stopped taking Remeron at the same time that I started this new regimen. This side effect is rare but reported by some users of Wellbutrin. I am working with Dr. Ibrahimi on a different medication that will have the positive effects of this one, but without the side effects I experience.

I saw Dr. Lietch last Friday and discussed my current plan. I have had no side effects with the Lovenox injections, 60 mg in .6 ml every 12 hours. We will continue that course of therapy for 6 more months. The only trouble I have is finding some fatty tissue in which to inject. There is not enough on my back just above my hips, nor on my thighs. The only spot I have had success is a small patch on either side of my navel. Those 2 areas are now riddled with small bruises. I had an injection last week that bled under the skin, producing a 2 cm diameter dark purple, hard, area on my lower back, that was raised by 1 cm. With some pressure on both side of the injection, we could extract about .05 ml of blood and about the same amount discharged as I slept on my back that night. I will try that again if I get another subcutaneous bleed.

With Dr. Lietch's approval, I am starting NATTO-K, 1 pill TID, and Winstrol (stanozolol) 2.5 mg BID. Winstrol had been effective in the past. I will start these as soon as I receive them. Once I start Winstrol, I will discontinue my use of Danazol due to their similarities.

With these new treatments, I hope to stop some of the others and get my med use down from my present usage.

pain levels and upcoming Dr. Leitch appointment

I have had pain levels of 6 through most of the day today. When they hit 7 this afternoon I took 10/650 mg Percocet.

I see Dr. Leitch Friday and will talk to her about how my Lovenox injections has been going for nearly 4 weeks. I also want to talk to her about starting Winstrol again. I had taken that for 12-18 months back 4-5 years ago, I believe. I stopped taking it because it was no longer available from my pharmacy. I found that it is available without prescription from an anabolic supplementary web site anabolic-steroids.

I also want to talk to her about NATTO-K, which purports to dissolve fibrin. It's a pill taken TID and is available at the local health foods store. More information can be found here.

I hope that these, in conjunction with the other treatments will stop the progression of this condition and eliminate the symptoms, specifically the pain and ulcers.

thoughts about decrease in Neurontin

Today I was thinking that my recent issues with depressive symptoms may be related to my large decrease in daily Neurontin dose. I went from 5400 to 1800 mg daily over the last month or so. In addition to treating neuropathic pain and parasthesia (which is why I take it), it is used frequently as a mood stabilizer, and as a treatment for some anxiety disorders, depression, and also insomnia. It would make sense to me that these symptoms would increasingly present since my dosage has been decreased, especially so drastically.

Under Dr. Shakel's advice, I will start to increase my Neurontin dosage again. The main reason for decreasing my daily dose was to decrease the sexual dysfunction I have been experiencing, which has been only mildly effective. And my pain level and experience of parasthesia has increased as well so increasing my doses to reduce those would make sense also. This reduced dose trial did not produce its targeted goal.

I have been taking 1800 mg daily. I will increase 300 mg every 2 days until I reach 2700 mg and see whether it has an impact on the depressive symptoms.

I am glad that the increase in these symptoms has only minimally affected my abilities to perform my duties at work and home.

depression symptoms

The following are signs which I have noticed increasingly over the last few weeks which I recognize as symptoms of depression:

-Lack of appetite
-Difficulty falling and staying asleep most nights
-Some feelings of hopelessness and despair
-Lack of joy in singing, in which I normally find a source of energy. I have skipped men's choir many times in the last month and haven't been to church choir but once this year
-Feeling tired and restless through the day
-Difficulty concentrating on brain intensive tasks

I know that I have been, over the last few months, having to come to terms with the increase in the severity and frequency of my symptoms of Livedoid Vasculopathy and also its increased treatment. I am also physically and emotionally dealing with some new side effects of some of the medications I am on now and these are contributing factors, as well as are large changes in my living arrangements and family life.

I have been taking Remeron (Mirtazapine) 30 mg at night for treatment of similar symptoms in the past and will meet with my psychiatrist soon to discuss these symptoms, and this and alternative treatments.

I mention this because I believe this is, as part of my overall health, related to my struggles with my medical condition.

Lovenox and insurance coverage

When I received my first Lovenox prescription 19 days ago, it was for twice daily injections for a month. The insurance company only authorized payment for doses for 14 days. Dr. Leitch submitted pre-authorization documentation including case studies of this drug therapy for treatment of this condition to the insurance company for coverage for the balance of the month.

It took a couple weeks but this pre-authorization was finally approved today for the rest of the month's doses and I picked up 10 of the remaining 20 doses today. There was some other insurance issue that prevented me from picking up the remaining doses but I was assured by the pharmacist that I could pick them up tomorrow.

I have an appointment with her before the month is up to discuss how the treatment is working. Assuming there are no issues, I assume we will continue this course of treatment for the foreseeable future.

bruising from injections

I have been injecting Lovenox twice daily for 12 days now and have experienced slight bruising at a few of the injection sites until this morning. My injection bled just a drop when I withdrew the syringe but it has stopped just a few minutes later. I looked at the injection site at noon today and saw an area about 30 mm in diameter, raised about 10 mm that felt hard. I assume I had been bleeding under the skin surface for quite a while this morning.

notes on being itchy

Last Saturday evening, I was in enough pain that I took to Percocet tabs. That night my whole body itched so much that many times during the night I awoke to scratch.