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.

Monday morning

I started anti-coagulant Lovenox (enoxaparin sodium) injections Friday evenings, 60mg/.6 ml every 12 hours, injected subcutaneously into the fatty tissue of my abdomen. The injections are unpleasant but not too bad really. The instructions say to avoid contact sports, shave with an electric razor, and use a soft toothbrush to minimize the risk of bleeding. Except for bruising at one of the injection sites, I haven't noticed any new or increased side effects after starting this treatment.

This is an expensive treatment and I am expected to continue this course of treatment for the foreseeable future. This raises concerns in me regarding a significant hike in insurance premiums which has already happened to the company for which I work annually for the past few years. I do not want to place this additional burden on our company.

At the same time, I am also very concerned about my future ability to be productive at work. I have already missed work due to my condition and foresee missing more in the future at an increasing rate. That really scares me. I have a similar concern about being able to function around home as well. This is what leads me to want to do what can be done to slow down the condition's progression.

I will make an appointment to see Dr. Leitch in a month to review this course of treatment.

Today's notes

I met with Andy Schakel last Tuesday afternoon and talked about the success of our pain management plan, maintaining pain levels around 3-4 since last week. We also talked about the side effects I have been experiencing, namely: I get drowsy, mostly in the afternoons; and continued difficulty achieving orgasm.

He suggested reducing the midday dose of MS Contin from 60 to 30 mg and also slowly decreasing the dose of Neurontin over time. Hopefully we can achieve a balance between the good effects and the side effects.

Since Tuesday, I have noticed I am not as drowsy, which is good, though sexual dysfunction hasn't changed. I am also trying to get more sleep by going to bed earlier. It's possible that lack of restful sleep is a contributing factor to these issues. I do notice that dropping the Neurontin dose increases my parasthesia. I will continue dropping the Neurontin dose further (currently 900 mg TID) to see if it has any positive effect. If the parasthesia gets worse, I will hold the dose to see if it levels out or gets any better at that dose. Otherwise I will increase the dose back to a previous level.

I hope to hear from Dr. Leitch's office today regarding the Heparin treatment so I can start that today as well.

today's thoughts

If I continue taking MS Contin even when I am not in pain, how will I know when a pain cycle has ended? In the past, I had tapered my narcotics as the pain level came down. Now, with pain levels around 3 and not taking any Percocet, I don't know if the pain has ended or whether it is just treated with narcotics enough not to notice. Does it matter?

Sexual dysfunction continues to be problematic. I will talk to Andy Schakel about it today during my follow up appointment. I am frustrated and starting to want to avoid intimacy to circumvent the issue. This is not what I am committed to and will work towards resolving the issue. I am guessing it is medication related. Perhaps some sort of change will make a difference. I have been told that sexual dysfunction has been much less problematic when I am between pain cycles, but if I don't know that my body's pain level has decreased, has can I know? Right now my pain level is down, but this continues to be an issue.

The current neuropathy treatment is successful enough. I continue experiencing discomfort when applying the Neurontin gel, but dropping my oral Neurontin dose is a good thing. I will continue this treatment for the foreseeable future. I still have neuropathic pain on the tops of both feet and especially around my ankles.

I have only one active ulcer and continue using Morphine gel on it. The others have mostly healed. 3 times daily is difficult to do, but I have been able to do twice daily very regularly. I use Neurontin gel at the same times, also twice daily.

I saw my dermatologist Dr. Nancy Leitch yesterday for a med recheck. I shared with her my concern about the rapid progression of this condition. Many years ago we discussed low molecular weight Heparin therapy and I brought it up again. We did not use this therapy back then due to my concerns about the potential side effects associated with taking a strong anti-coagulant, namely bleeding more than normal when injured. We did not know at the time how fast this condition would progress, which is what brings it back up now. She is looking into the proper dose and will call in a prescription by this week's end to start treatment. This therapy will be taking in addition to all other therapies, with the possible exception of the daily dose of aspirin, which I may discontinue. This medication is injected subcutaneously, which will take some getting used to. I will need to check into how to fly with syringes as well for when I travel. I may need to always check my luggage.

I had my liver function checked as is ordered by Dr. Leitch twice yearly.

Dr. Leitch also brought up PUVA treatment again which uses ultraviolet lights much like a tanning bed. If I remember, this treatment was 3 office visits weekly every week, and this schedule is difficult for me to keep. I don't remember seeing dramatic results when we tried it years ago. I do get a lot of sun exposure during the spring, summer, and fall months from spending time outside coaching softball, yard work, and cycling. I do not see utilizing this therapy again at this time. Other than this PUVA therapy, I believe I am doing everything that other patients with this condition have tried.

Dr. Leitch is calling Wound Care Clinic, a clinic that does hyperbaric treatment of wounds that reportedly speeds the healing process, to see if Health Partners will cover the treatment. This treatment is covered for similar ulcers due to diabetes. If so, I will schedule therapy next time I have ulcers break through.

Morphine gel

I used Morphine gel last night and this morning. I first noticed last night that its effect was dramatic and very fast: I noticed almost immediate relief and roughly an associated drop in 2 pain levels, from 7 to 5. This morning was similar. These effects were surprising to me. Also, I had to use 5 bandages to cover the ulcers and when applying this gel 3 times daily, and I do the multiplication, I will end up using a whole lot of bandages.

It has been a little difficult to apply the Neurontin gel and avoid the ulcer sites and the area around them so the bandages would stick to my skin, yet still apply to the areas that are most affected by neuropathic pain. It is still very painful to apply it since it is thick and doesn't spread easily (high viscosity) and also sticky. I will use it until next Tuesday to give it a full 2 week trial. Doug, one of my pharmacists, is very interested in its effectiveness as he suffers from neuropathic pain from type 2 diabetes and is also treating with oral Neurontin with decreasing effectiveness.

after seeing Andy Schakel and side effects

I saw Andy Schakel, the intern working with Dr. Belgrade, yesterday afternoon and discussed the ineffectiveness of the pain management plan that we came up with last week. We want to decrease the consistently high pain level and yet decrease the amount of short acting narcotics taken for breakthrough pain. We also want to decrease the severity of the side effects that I have experienced when on such high doses.

The new plan is to take 60 mg TID (three times daily) MS Contin for baseline chronic pain and 10 mg every 4 hours Oxycodone for breakthrough pain (up to 100 doses monthly) not managed by MS Contin. For neuropathic pain I will continue the 1200 mg TID doses of Neurontin and Neurontin gel TID on my feet/ankles, though administering the gel to a painful area of my skin three times daily is an excruciating experience. I will use Morphine gel TID on the existing and any new ulcers starting tomorrow when I pick it up. We will continue this course of treatment for a week and meet again at that time for a status check. I continue wearing support hose on my left foot/calf to minimize swelling and its painful effects.

One side effect I haven't blogged about much is a sexual dysfunction when using heavy narcotics. I have had trouble achieving orgasm during high pain cycles. I don't yet know if it's due to the decreased skin sensitivity from medications or the pain effects themselves. Though I don't specifically remember, I have been told that this problem happens more during pain cycles than not. I will try and track this issue better using this blog. I haven't achieved orgasm in roughly 2 weeks though have had sexual activity almost daily. This has left me feeling emasculated and frustrated. I do not want to tend to avoid sexual activity because of this problem nor do I want to have this worry in the forefront of my mind. Self fulfilling prophesy syndrome is certainly a possibility in that case.

After starting MS Contin yesterday, I was very tired today and slept from last night until 1:30 pm today. About 30 minutes after my first dose of MS Contin and a simultaneous does of Oxycodone yesterday, my pain level was down to 5 and I was able to walk without my cane for the first time since early last week. It was a welcome relief to have my pain level that far down. It had been at 6 or above since last week, with which is difficult to maintain my active lifestyle. It has stayed below 7 since then except for a little while today due to being late with my noon dose of Oxycodone. I am optimistic that we have settled on an effective plan.

Notes from 9-15-09

First of all, a correction: the dosage of Oxycontin I am taking is 20 mg TID, not 10 mg as I blogged previously.

I continued taking 20 mg Oxycodone every 4 hours yesterday in addition to 20 mg Oxycontin TID. I hope to hear from Dr. Belgrade today about a different care plan. I did not pick up the Morphine gel yesterday so haven't starting using it yet. Hopefully I pick it up today so I can start.

I am concerned about the amount of Oxycodone I am currently taking every day. I hope to start a different narcotic with a lower dosage.

Thankfully, I did poop a whole lot yesterday so I will maintain a once a day regimen of Miralax.

notes on nausea

Looking back at recent posts, I need to post an update on my nausea. It slowly dissipated and was gone by the end of last week. I also started taking narcotics by then so maybe that helped ease the nausea.

new pain regimen

Except for the Morphine gel, which I couldn't pick up until today, I had been following the new medication plan. I figured it would take a few days for my body to respond to the changes and offer the following experience description.

My pain levels have had consistent spikes in the 6-9 range. Spikes from 7-9 at night have become the norm in the last few days. I wake up from pain through the night. I also itch all over my body as a side effect. I wake up scratching, though it doesn't really provide any relief. Starting Saturday night, I went back to taking Oxycodone for pain relief, though that is not part of the pain management plan. I called Dr. Belgrade's clinic Saturday night around midnight but didn't get a call back so I went back to what I had been doing before. It didn't provide as much relief as I was hoping and, even on daily doses 80 mg Oxycodone, 60 mg Oxycontin, and 10/650 mg Percocet (5 doses daily) I can't get my pain level below 5 for any significant length of time. The Neurontin gel doesn't seem to provide any relief and is painful to apply. I will pick up the Morphine gel at noon today and apply it then.

I hope that Dr. Belgrade will generate a different pain management plan today and that I will get relief.

I also haven't pooped since last week sometime. I continue to take Miralax once a day but will start 2-3 times daily until I have success. I remember having major pain issues due to constipation in April. I vowed to never go through that again so am stepping up my efforts.

My feet swelled up early yesterday. I remember that has happened in the past during some pain cycles as well. I am wearing my support hose on my left foot/calf now to minimize the swelling.

new pain doctor

I met with Dr. Miles Belgrade and his intern Dr. Andy Schakel yesterday and an associated pain psychologist in the same clinic. The four of us discussed my pain experience and the history of my Livedoid Vasculopathy diagnosis. We developed a slightly different strategy for my pain management, which we will try for a month and then reconvene for review.

I will be decreasing the dosage of Neurontin from 5400 to 3600 mg daily. This should decrease some sexual disfunction I have experienced, which has been due to decreased skin sensitivity. I started using a Neurontin gel on the tops of my feet this morning, which is where I have experienced neuropathic pain. This should counteract the decrease in oral dosage and ease the burden on my liver, while maintaining or increasing the medication's effectiveness.

I will start taking longer acting Oxycontin instead of shorter acting Oxycodone. I will be taking 10 mg TID whether or not I have high pain levels. The theory is to even out the large swings in dosage from 80 mg daily to none. This should decrease the confusion I have experienced.

I will use 10/650 mg of Percocet every 4-6 hours for breakthrough pain, with a maximum of 100 doses per month.

Additionally, I will use a Morphine gel on my ulcers TID when they are present. This will preclude the use of Duoderm dressing, which I have left on for 3-4 days. I will try standand Band-Aids and see how that goes.

The Neurontin gel is only available from one Pharmacy locally as is the Morphine gel.

The overall plan is to even out the dosages of narcotics and use localized topical pain treatment to minimize oral narcotic use as well.

I talked to both Dr. Belgrade and his pain psychologist about my addiction concerns. It was their opinion that I posed a low risk for addiction with this course of treatment and my current mental, emotional, and physical state. This put my mind at ease.

It was troubling to realize, during the course of our discussions, that I have experienced high pain levels for 19 of 40 weeks so far this year. That's nearly half the year. Last night this led to feelings of sadness, inadequacy, loneliness, emotional pain, powerlessness, and anger. I was able to work through some of these feelings with my girl friend Kalyn, whose support has been unwavering since this spring. This morning, some of these feelings linger, though are not nearly as strong.

9-9-09 status

My unmedicated pain level continues to be around 6-7 and I continue to experience nausea. I will try using ginger ale and soda crackers to treat the nausea. I continue treating the pain with Percocet and last night supplemented with 10 mg Oxycodone.

current pain level

This weekend found pain levels 6-7 most of the time, which I treated with Percocet. I do wake during the night with high pain levels as well.

later 9-4-09

My pain level was increasing so I took a Percocet in the afternoon. I am now back down to a 3 where I am normally.

new pain

My pain level has been down since my last cycle ended a week or 2 ago.

I have noticed in the last 3 days a new pain radiating from the interior of my left ankle across the top of my foot. Pain levels up to 6 today without narcotics. I will treat if the pain increases.

My ulcers have continued to heal. There are 3 left all on my left ankle, 2 smaller and one larger.

8-27-09

I have been at home for the last 2 days with nausea. No fever or other symptoms, just nausea. I have been off narcotics as well for the last 3 days, with pain levels decreasing to 4 now.

notes on addiction

I went yesterday with no narcotics to see how that went. I was in a lot of pain all day, levels mostly around 7-8. I didn't notice any psychological draw to take any narcotics, though I had them available to me all day. There didn't seem to be a physical draw either, except for the pain of course. Other than that, I didn't notice any other reactions.

update

I am back from the trip our week-long trip the mountains of Colorado. I was able to participate in all the activities which included horseback riding, whitewater rafting, kayaking, ropes course, and a 4 mile hike near the top of one of the mountains. My pain level was between 5 and 9 through most of the trip. I treated with 2 Percocet tablets (5/325) and up to 20 mg of Oxycodone every 4 hours. The pain was highest in the morning, when I would take my medicine dose 30-45 minutes before I got out of bed, to ease into being on my feet and walking.

I have never had more then 1 skin ulcer at a time and now have the one ulcer that I have had for a few weeks and also 6 other smaller ulcers for a total of 7. 6 of them are smaller (.5 cm in diameter). I am covering all of them with Duoderm dressing to keep them from developing hard scabs and also minimize the risk of infection. Changing the dressing is extremely painful as is cleaning the area with alcohol prior to putting a new dressing on. I have not had an infection yet with all the open sores I have had.

I have expressed to some close friends concern about addiction again, now that I am taking constant large doses of strong narcotics. I do notice a pleasant psychological effect where I feel almost a feeling of warmth which radiates from my chest throughout my body. It is this feeling of warmth that decreases the pain level. I do not know what addiction would feel like but I did have a recent experience which triggered this concern. When in the mountains and having a high pain level, I was searching through my bags looking for my bottle of Oxycodone and couldn't find it. I had a strong panic feeling because I thought I had lost the bottle and wouldn't be able to take my dose. It was this strong panic feeling that scared me afterwards. Frequently I also have a slight panic that I will run out of narcotics some time and won't have any when I need it to decrease the pain.

I look forward to the appointment on September 9 with Dr. Belgrade and developing a plan to better manage the pain I am living with now and talk with a psychologist specializing in pain therapy about how to cope/manage and about my addiction concerns. I am thankful that most of the time my pain level is around 3-4 and have only had 2-3 outbreaks annually .

I describe my pain as constant with sharp spikes. The pain feels like an deep abrasion, which is consistent with the appearance of the ulcers. The pain is also exacerbated by movement as the skin is tugged and stretched. Accidently bumping an ulcer against something is extremely painful, which thankfully only happens infrequently. I am constantly amazed at the depth of the ulcers and what facets of my body I can see under the skin. In addition to the abrasion pain, I also experience a soreness in both ankles. This pain increases as I walk and move.

I also now experience moderate drowsiness about an hour after dosing my narcotics and I continue to experience confusion though that has decreased in the last 2 weeks.

pain level

My pain level was at 6 last night with spikes at 8. I had difficulty sleeping due to pain and was up until about 2:30. I treated with 2 Percocet tablets and also 10 mg of Oxycodone. If I have similar pain tonight I will treat with additional Oxycodone.

I am back to walking with a cane again and yesterday received a handicapped parking permit, which will allow me to park close to store entrances and not have to walk as far.

pain level is back up

Over the past 2 weeks, my pain level has steadily increased. This morning and last night between medication doses it was a 7. I can bring it down to 4 with 1 or 2 Percocet tablets (5/325). I was taking it in conjunction with 400 mg daily of Tramadol. Tramadol's side effects for me are severe itchy skin, anxiety, sleeplessness. These side effects have increased in severity each time I have gone back to taking it. It is bad enough now that I stopped taking it and am using Percocet exclusively for pain treatment (in addition to Gabapentin [Neurontin]), 5400 mg daily.

I have an ulcer on the interior of my left ankle which showed up about a week ago. My ankle is also swollen in the area of the ulcer. The pain radiates from this ulcer out to my shin. I also have pain in my right shin, which feels like someone kicked me there. I recognize this type of pain which I have had before in the same area. I will try and publish pictures soon of the ulcer and the current status of the discoloration.

I have an appointment with Dr. Belgrade September 9 to develop a plan for now and the future.

I leave this Saturday August 8 for a back packing/camping trip in the Rocky Mountains. I am concerned that I will not be able to fully participate in all the activities. I believe at this point that I have enough medications to manage the pain.

I notice again that I get confused when I take Percocet. The confusion presents in part as an inability to come up with words. I will start a sentence and not be able to think of or speak correct words, or words that would even make sense. I also got started doing a task and can't think of how to complete it. It's very frustrating. I remember this happening last April, but I don't see that I blogged that information. I also found myself twice this morning stopping part way through a simple task (sorting through medications), not being able to think of how to complete it. This is worrisome and will talk to Dr. Belgrade about it when I see him in September.

blood in urine

On March 25 I discovered blood and a few clots in my urine. I did not have a fever nor any pain in my lower back which would indicate a kidney infection or other problem. It cleared up 5-6 days later without treatment but I made an appointment with Dr. Hackett, a urologist to have it checked out. A blood test showed a testosterone level of 39, with a normal range between roughly 250-850. I subsequent test showed a normal level of 389 so the initial test was ruled an anomaly. A CT scan of my kidneys was unremarkable and a cystoscopy or my bladder showed nothing abnormal. The blood was attributed to a possible small ulcer in one of my kidneys or bladder caused by my LV condition. It is unknown if this will recur.

Pain relief

As I look back at my latest post, I realized I didn't post about the end of the latest pain cycle. I believe it was the afternoon of Tuesday May 12 when I was waiting for my pain level to increase before taking my afternoon pain med doses. My pain level never increased and has stayed down in the 3 range since then. I stopped taking all narcotics at that point and haven't needed them. I looked back and this pain cycle lasted about 6 weeks.

notes from 5-7-09

I have been laid out in bed since Sunday evening, it's now Thursday, with a bad virus. I was checked for flu with a negative test result. I am slowly getting better and am back at work today for the first time this week.

Since 4-30, my pain level increased again back to 6-8. For pain treatment, Dr. Abraham prescribed Oxycodone since Percocet has worked in the past, which contains Oxycodone and Acetaminophen. That gave me the relief I needed and was able to get me lain level down to 4-5 where I could function again.

My pain level dropped off Tuesday afternoon down to a 3-4 and has stayed there since then. I stopped taking all pain medications except Neurontin. This is a welcome relief and I think is the end of this pain cycle, which has lasted about 6 weeks. I didn't have any ulcers this time.

I haven't made my appointment with Dr. Belgrade but will soon to come up with a plan for the future.

Here is my current medication list:

Aspirin 325 mg oral Take 325 by mouth daily
Danazol (Danocrine) 200 mg oral cap Take 200 mg by mouth daily
Folic Acid 400 mcg oral tab Take 400 mcg by mouth daily
Gabapentin (Neurontin) 300 mg cap Take 1800 mg by mouth 3 times daily
Mirtazapine (Remeron) 30 mg oral tab Take 30 mg by mouth each night
Nifedipine (Adalat CC) 30 mg oral tbsr Take 30 mg by mouth daily
Oxycodone acetaminophen (Percocet) Take 1-2 tab by mouth
5/325 mg oral tab every 4-6 hours as needed
Oxycodone 5mg oral tab Take up to 30 mg by mouth as needed
Pentoxifylline 400 mg oral tbsr Take 400 mg by mouth 3 times daily
Ultram 50 mg oral tab Take 100 mg by mouth 4 times daily as needed
Vitamin B-12 1000 mcg tab Take 1000 mcg by mouth daily
Vitamin B-6 100 mg tab Take 100 mg by mouth daily

4-30-09

Yesterday evening I had some unexpected pain relief. In the afternoon, after my morning dose of pain medications had worn off, my pain level was down so I didn't take any Dilaudid, Percocet, or Ultram. Even without those in my system, my pain level was 4-5 and I was able to walk without a cane for the first time on a week or so. I was very happy and thought maybe the end of this outbreak was at hand. By 7:00 pm my pain level was increasing and and by 9:00 pm I had taken all these pain medications again out of necessity, and had a pain level of 7-8. I am trying to understand what led to the decrease in pain, possibly that I had cooled my foot in cold water for 4-5 hours through the day while I sat at my desk at work. That is the only change I can think of from what has become my daily routine.

I see Dr. Abraham this morning to try and get a referral for Dr. Belgrade. I also received the name of another pain specialist, Dr. Scott Schultz, a radiologist who works in Robbinsdale, MN. I got this name from Jill Landecker, a pharmacist at Cub Foods where I get my prescriptions filled. Being at the pharmacy every week, I have gotten to know my pharmacists at Cub Foods pretty well over the years. After my appointment this morning, I will call and try and set an appointment with this doctor as well.

My hope is that things go well with Dr. Abraham this morning and he can be my primary physician. I have been without a primary care physician for a couple years now, since Dr. Bosmans left my local clinic.

notes from 4-29-09

Since my last post, my pain level has continued to increase. Last Wednesday 4-22, after having pain spikes every minute or so at a pain level 9 with a base level 7-8, I went to the ER at North Memorial Hospital. I was given 2 mg of Dilaudid IM injection, which got the pain level down to a 7 with spikes at 8. Then I was given 10 mg Morphine IM injection, which eliminated the spikes. I left with level 6-7 pain.

On 4-23 I was prescribed Dilaudid, 4 mg every 3-4 hours. Without this and other meds, may pain level is 7-8 with spikes at 9. I also am slowly increasing my dosage of Neurontin (Gabapentin) up to a maximum 7200 mg daily, taken in 3 equal doses. For pain management, I now take:

Dilaudid 4 mg every 4 hours
Percocet (Oxycodone/Acetaminophen) 20/650 mg every 4 hours
Ultram (Tramadol) 100 mg every 4 hours
Neurontin (Gabapentin) 1800 mg three times a day
aspirin 320 mg one daily

I also soak my foot in cold water once or twice a day for 10-30 minutes, which also seems to help. I can get my pain level down to a 6-7 most of the time, though it increases as the medications wear off.

From what I have read, Dilaudid should have a much larger effect than it does on me. From what I remember about Morphine injections from 2 years ago, they had a larger effect than the Dilaudid injection did last week.

I noticed my right foot and ankle was swollen on 4-24 in the areas of pain. I started wearing my support hose (30-40 mm compression) to minimize the swelling. See the pictures I have included.

I am trying to get an appointment with Dr. Miles Belgrade, a pain treatment specialist working from the Pain and Palliative Care Center in Minneaoplis. I have heard very good things about him. I really need a doctor that is willing to work with Dr. Leitch and me on the treatment of this condition and the associated pain. I hope this is the doctor for me.

4-13-09 pain

I woke up last night every 3-4 hours with pain spikes at 8-9. With my existing pain meds, I can only get my spikes down at a 7-8. I spike every few minutes and, other then meds, nothing seems to help alleviate the pain.

The spikes are a sharp stabbing pain located on the top of my right foot, centered over my 3rd and 4th tarsal. I also have a base pain level of 5-6 which feels more like more of a skin irritation and ache.

notes from 4-12-09

My pain level has been up in the past 3 weeks or so. I have no ulcers but pain radiating on the exterior of my right foot. It started near my ankle 3 weeks ago and felt like I had been hit hard with a sharp object. I did not have swelling or anything in that area. The pain moved down the outside of my foot and now is located down near my toes. My pain level has been 4-6 as a base with spikes at 8-9. I have treating with Ultram and Percocet but can only get the spikes down to 7 or so and the base down to 4-5. I have an appointment with my dermatologist to discuss pain management and what we can do to bring the level down further. I would like to get the spikes down to 5, with a base at 3-4 if possible.

It's been a long time

It's been more than a year since my last post, I kick myself now as I look back through my posts because of my inability to track my progress through the year. But, as much as I hate the saying, it is what it is. Here is what I remember about the last year:

Around May of 2008, I had a pain flare up which was excruciating. It was discovered that I had an ulcer between the toes of my right foot. We treated the pain with Oxycodone which helped.

Overall, I would say I have had a pretty good year as far as pain flare ups. My pain level is up in the last week or so. Mostly I notice my neuropathic tingling is worse. That causes pain on the tops of my feet and up my shins. Pain levels in the 4-6 range while on 200 mg, 3 times a day of Ultram, which now has a side effect of making me anxious. I have trouble sleeping as well. I may try to switch to Oxycodone if my pain level stats where is has been.

That's it for now. Hopefully I will blog more in the near future.