Charlie's personal LV blog

about 3 weeks later

noreply@blogger.com (Unknown) — Tue, 05 Apr 2011 20:11:00 +0000

I would say that my pain level is down from before I started IVIg therapy. I don't need Oxycodone in the morning. I haven't been needing my full daily prescription most days.

I have been back in the gym working out 2 hours a day, 3-4 days a week. In additional to weight lifting, this includes treadmill walking in my aerobic zone for 45 minutes or so. This is another indication that things have improved. I look forward to getting back on my bike, cycling again, as soon as the weather warms.

the day after

noreply@blogger.com (Unknown) — Fri, 18 Mar 2011 23:47:00 +0000

This morning my pain level was 6-7 which was hopeful but is 7-8 now at 7:00 pm. I just took 10 mg of Oxycodone to try and bring it down. The most painful area still radiates from my left heel and shoots up the back of my leg, though I have pain on the tops of both feet as well. Sometimes I get this pain when my feet are swollen but they aren't right now. I hope not to need more Oxycodone tonight.

I had a small headache this morning, but I didn't treat it except to continue drinking a lot. It went away by later in the morning and it's still gone now. I didn't take any more Predisone after the 60 mg total last night.

IVIg second dose

noreply@blogger.com (Unknown) — Fri, 18 Mar 2011 03:48:00 +0000

It's 11:00 pm the night after my second IVIg dose, taken on consecutive days. I talked to Dr. Shapiro about my pain level being so high (8-9) the morning after my first dose and he said that it was not unusual. I was hoping for immediate relief but that may not be how it plays out.

A headache started before I left the infusion center today, which could not be reduced with Ibuprofen. I took 20 mg of Prednisone, and 2 hours later another 20. After an additional 2 hours, the headache hadn't had any significant improvement, so I took a third 20 mg dose. Then the pain finally started to dissipate.

I left the center with pain levels 8-9 in my left heel and the top of my right foot. I waited until night before taking any Oxycodone to see whether I would need it or not, hoping the pain would decrease from the treatment. I took 10 mg followed by an additional 10 mg 90 minutes later to bring the pain down to where I could walk without wincing.

IVIg notes

noreply@blogger.com (Unknown) — Thu, 17 Mar 2011 14:10:00 +0000

I forgot to mention in yesterday's post about my current pain level. It was 6-8 the day prior to starting IVIg therapy without any narcotics. Last night, after my first treatment, it was 6-7. This morning it is 7-8 and I am walking with a cane. I haven't noticed any dramatic effect from the treatment.

I have not experienced any side effects from yesterday's treatment.

it's been a while

noreply@blogger.com (Unknown) — Wed, 16 Mar 2011 19:54:00 +0000

A quick update:

I went off Morphine again in September and seized Sept 11. After going back on the day after, I worked with Dr. Schakkel to taper much more slowly. I am off Morphine now and got my driver's license back last weekend.

I was on Coumadin until about 4 weeks ago when I noticed a lot of blood in my urine. A CT scan showed a clot in my left kidney, which I passed later. That was excruciatingly painful. My urologist Dr. Hackett scoped my bladder and left kidney. He said my kidney looked almost completely bruised inside, just like my ankles. He said that if I go back on anticoagulants, I have a high risk of bleeding and clotting again.

As I blog now, I am sitting in an infusion center getting my first 70 g IVIg treatment. I receive another tomorrow and then another in 4 weeks. We will re-evaluate at that point. I expect it to take 6 hours or so to get that high a dose in. Headaches are the most common side effect, mostly due to dehydrating effects of the IgG antibody.

Coumadin, Morphine, and June 30 seizure

noreply@blogger.com (Unknown) — Thu, 29 Jul 2010 21:18:00 +0000

Dr. Leitch and I are still working to arrive at a Coumadin dose that will keep my INR in the 2.5 to 3.0 range. Today my dose increased from 3.5 mg to 4.5 mg, yesterday's INR was 1.5. I am wondering if my body is fighting to keep my INR down, that even as my dosage increases, it fights harder to stay down. I had INRs of 3.3 and 3.2 on consecutive days on 4.0 mg. Now on nearly the same dose, I am down at 1.5. We will continue working at raising my INR through increased Coumadin doses.

I stopped taking Morphine right after my last post on June 21st. I had another seizure on June 30th. My neurologist Dr. Fiol and I believe that the major contributing factor was the decrease in my use of Morphine or that I wasn't taking any at all that lead to my last seizure and the winter seizures as well. My pain manager Dr. Schakel put me back on Morphine, 30 mg three times daily, but we are tapering my current use down at a MUCH slower rate. Last fall it was a 15 mg taper twice weekly. Now it will be a 15 mg decrease every 2-3 weeks. I will still be taking Morphine, just at a lower dose, maybe 45 mg total daily.

During the week or so I was off Morphine, some of my major side effects ceased: I could urinate without stream interruption, my constipation went away, and I could ejaculate for the first time since August. I was like a new man! That was a huge boost to my self esteem and mood in general. My overall outlook on life improved dramatically.

Once I started taking it again, the side effects came right back. We are hopeful that the decreased dose will minimize the side effects so I can be that confident man again. I will be working closely with Dr. Schakel to get a workable plan not only for pain management, but also managing the side effects. I am no longer willing to live with these to the degree with which I have been.

Coumadin

noreply@blogger.com (Unknown) — Mon, 21 Jun 2010 19:44:00 +0000

I started Coumadin (Warfarin) this morning. The plan is to replace Lovenox injections with Coumadin oral tabs. I get my blood checked Wednesday and Friday with a possible dose modification next Monday. 2 mg daily for now.

I have mostly tapered off Morphine. I have had nausea lately, which I recognize from November's taper. So I have stayed with my morning dose, enough to take care of the nausea.

100th post!

noreply@blogger.com (Unknown) — Wed, 19 May 2010 21:15:00 +0000

Wow, 100 blog posts since I began back in early 2006. This has proven to be very useful for me and many others as well.

The pain in my feet continues, though it's better in the morning than it has been, but much worse at night, especially after use. The more use, the worse the pain. The right is worse than the left.

Continued lack of ulcers is very surprising. Perhaps an indication that something we are doing is working well. The Lovenox injections maybe?

IVIg status

noreply@blogger.com (Unknown) — Thu, 29 Apr 2010 19:39:00 +0000

I talked to the Walgreen's Option Care infusion center today about my IVIg therapy. They have received the order from Dr. Leitch and are working to get it approved through my insurance. My treatment will be a 5 hour drip of IV Immunoglobulin for 2 consecutive days per month. I will do this for 4 months for a total of 8 treatments. This is the extent of the treatment and I hope to be completely ulcer and pain free after the conclusion of the treatments. That would be a dream come true for me and hopefully many others.

I had a thought the other day: what if the pain I experience now and between other ulcer outbreaks is not related to LV but something else? I asked the other 3 women with LV that I trade email with and none of them have been ulcer free since their ulcers started. So for that I am blessed. But I do not have anything else to compare to. I will ask Dr. Leitch when I see her next.

status 4-22-10

noreply@blogger.com (Unknown) — Thu, 22 Apr 2010 18:27:00 +0000

My pain level continues as it has for weeks and months now. I am surprised that there has been no reprieve since February. I am still active but watch how much I do on my feet. When I do a lot during the day, I suffer more in the evening and at night.

Dr. Leitch is checking into IVIg therapy as a possible treatment.

still painful

noreply@blogger.com (Unknown) — Mon, 12 Apr 2010 21:16:00 +0000

I looked at my last post and I can say the same about my pain now, 8 when I wake and 4-7 through the day. I have no ulcers. I am back to work today and still seizure-free.

Through the web and email, I have now been in contact with 3 women who also have been diagnosed with LV. We are sharing stories and treatments in the hopes that something will work.

still painful

noreply@blogger.com (Unknown) — Tue, 30 Mar 2010 15:34:00 +0000

My feet continue to be painful. Pain level at 8 when I wake, 4-7 through the day, worse after I have walked a lot during the day. I continue my outdoor walks, though less frequently now, maybe 2-3 per week. I will talk to my doctor about increasing my Oxycodone dose during my next appointment.

I met with my boss and will return to work in a couple weeks. It will be so good to get back to work again. I miss being in the office and productive in that way.

I continue to be seizure-free. My last seizure was March 12, 2-1/2 weeks ago. What freedom I feel.

I was contacted by a woman, Kim, who read my blog. This is the first person I have been in contact with that also has LV. She has been in contact with 2 other women as well. I don't feel like such an isolated case anymore. Her experience has been similar to mine in many respects, though hers progressed much more rapidly. She also has had more than 70 ulcers at times. I sent Kim's current treatment to my dermatologist for her feedback.

Dr. Fiol appointment

noreply@blogger.com (Unknown) — Thu, 18 Mar 2010 21:30:00 +0000

I saw my neurologist today and he told me I should stop wearing my helmet, that it just reinforces in my mind that I have a seizure disorder. So after I took it off and carried out of the clinic into the warm sunshine, I felt freed of what has become for me the symbol of my condition and my frustration and anger. This is a significant step in my improvement and cause for celebration.

He also said that I can't drive for the 6 months following my last seizure. I do not look forward to a summer without that luxury.

I have been seizure free since last Friday. I ended up with a total of 3 seizures last week, down from 6 the prior week.

My pain continues to stay in the 4-6 range. The worst pain is on the front of the balls of both feet, nearest my big toes. Near the end of the day when the pain is worst, I take off my shoes and elevate my feet.

Last Tuesday I saw Dr. Schakel, who has been treating my LV pain since last fall. With the pain management plan we developed over time, I can see my regular doctor each month for an assessment and get my narcotics prescriptions. I graduated from the Pain and Palliative Care Clinic, another cause for jubilation!

recent progress

noreply@blogger.com (Unknown) — Fri, 12 Mar 2010 22:07:00 +0000

My pain is still under fair control. Though higher when I wake, recent daily pain levels are in the 4-6 range. Maintaining my active lifestyle is possible, though I need to take off my shoes and put my feet up towards the end of the day. During the day, I take a total of 5-10 mg of Oxycodone for breakthrough pain.

I am now measuring my seizures in number per week instead of per day. That is great news! I had 6 last week and only 2 so far this week, with a day and a half left. I see my neurologist, Dr. Fiol, next week to discuss my progress and get his feedback on when I can drive again.

90 days have passed since I last worked and I am still working through the long term disability insurance process. Now my application is in medical review. Next week I should hear whether or not it's approved.

seizure news

noreply@blogger.com (Unknown) — Tue, 09 Mar 2010 00:23:00 +0000

I had a seizure last Friday, which was my only seizure since last Tuesday. That's one seizure in 6 days! I can finally see light at the end of this tunnel. I will make an appointment with Dr. Fiol, my neurologist, and talk about my progress and discuss how long I have to wait after my last seizure before I can responsibly drive again. I am excited about the prospect of driving and working again.

current pain level and seizure news

noreply@blogger.com (Unknown) — Thu, 04 Mar 2010 15:42:00 +0000

My pain level since seeing Dr. Schakel last has been 3-4 and I can walk around, go shopping, and do my 1 hour daily walk. We are now achieving the goals of my pain management plan. Thank you Dr. Schakel. Also, I am still currently ulcer free. I do wake up with pain levels between 6-8, so I take my morning doses and wait a half hour before getting out of bed.

Lately my seizures have been less frequent, at 2-3 daily in number, and have been described to me as being much less violent and mostly it looks like I am peacefully resting. I am still confused and scared when I come to. The people around me that I am with are more relaxed and skilled in what to do and how to manage my seizure and also the onlookers. My youngest Lucy, has been extremely helpful, agreeing to go with me places knowing she will be the one who needs to manage all aspects of my seizure if they happen. She takes it all in stride. I love and appreciate her dearly every day.

Yesterday was the first seizure free day I have had since December 9. This is certainly cause for celebrating!!! I did some looking back in my notes and calculated I have had between 400 and 500 seizures in the previous 84 days. That's a lot. Along the way I have met others that have suffered through and/or eliminated their seizures. That helps me feel not as isolated.

My current med list is:

aspirin 325 mg daily
Cymbalta 60 mg daily
Danazol 200 mg daily
Persantine 75 mg three times daily
Lovenox 60 mg/.6 ml subcutaneous injection twice daily
Folic Acid 400 mcg daily
Neurontin 1200 mg three times daily
Remeron 30 mg daily
Nifedipine SR 30 mg daily
Pentoxifylline 400 mg three times daily
Zantac 150 mg twice daily
Trazadone 150 mg daily
Vitamin B-12 1000 mcg daily
Vitaminb B-6 100 mg daily
MS Contin 30 mg three time daily
Oxycodone 5-10 mg as needed
Well butrin SR 50 mg three times daily

new pain management plan 2-23-10

noreply@blogger.com (Unknown) — Wed, 24 Feb 2010 00:05:00 +0000

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

noreply@blogger.com (Unknown) — Fri, 19 Feb 2010 14:22:00 +0000

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

noreply@blogger.com (Unknown) — Thu, 18 Feb 2010 15:38:00 +0000

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

noreply@blogger.com (Unknown) — Thu, 18 Feb 2010 02:33:00 +0000

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

noreply@blogger.com (Unknown) — Fri, 12 Feb 2010 14:47:00 +0000

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

noreply@blogger.com (Unknown) — Tue, 02 Feb 2010 17:57:00 +0000

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

notes on seizures

noreply@blogger.com (Unknown) — Thu, 14 Jan 2010 20:00:00 +0000

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

noreply@blogger.com (Unknown) — Wed, 16 Dec 2009 16:39:00 +0000

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

noreply@blogger.com (Unknown) — Fri, 20 Nov 2009 14:23:00 +0000

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.