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.