Some results - from First and Second Tibial nerve block test - blocking the sensory nerve for EM pain

General
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Quick update Tibial nerve block - second diagnostic test block happened on 2-19-2016 at 9:30am It had a slightly different result from the first block.

Here is a quick summary of both blocks.

12-30-2015
First Tibial nerve block performed on left foot, with cold water chilling before the block and Vitamin B12 shot as well. Tibial nerve was blocked with injection of 3cc of lidocaine injected by a foot doctor.

Mom was not active much that day, and slept much of the afternoon. She had ZERO pain in the left side for 10 to 12 hours. She had even temperatures throughout her left foot, but her foot was chilled before the block and had mixed temperature readings and little activity during that 12-30-2015 test.


She had a reduction in phantom leg pain for three weeks on both legs from the block which happened on the left side.
She had flares in her right side which were bad, but the left side stayed without pain for 12 hours. Of course when the block wore off both sides had flares again.


Some time passed before we finally did the second Tibial nerve block test.

2-19-2016 9:30am - foot doctor arrived and performed block on both feet.


Some things were different before this block.
Mom had low blood pressure but bad flares before and didn't chill her feet before the block with cold water immersion. She cooled the feet less with a little bit of ice packs, so they were hotter before the test block.


The block was on both feet - with 3cc of lidocaine injected to block the tibial nerve which is a sensory nerve block above the ankle.
Note: This is not a sympathetic nerve block and blocks pain sensation only.
This is not a full ankle block of the entire foot which would require many different nerves to be blocked. It's just a tibial nerve block.


After the second block mom was more active, but stayed in her chair and the block seemed to wear off in about three hours this time.

She did a test, walking with the foot totally blocked and could walk very well. Her foot doctor was actually surprised how mobile she was while under the influence of the block. She could have not taken one of her pill doses for pain, but decided to take her regular medication anyway out of force of habit. Not knowing if other drug side effects might happen by stopping her other medications.


Later around 4pm, mom wanted to go out in the car and I took her in a wheelchair for a two hour ride around town, running errands. The wheelchair was used to get her to and from the car. She returned at 6pm and walked about ten feet inside the house from her wheelchair to the kitchen to sit down. No water cooling happened but she did cool her feet on the car's AC vent for two hours.


Her feet felt "weird". Perhaps they were still a bit numb. She had red and hot feet, but less pain. I measured the bottom of her feet and the skin temps on one part of her left foot was 105F.
Her core temp was normal, but skin temperatures did get high.

So the double block blocked pain, but didn't prevent thermal runaway from activity. This is a pretty good result but we will seek consensus from her doctors on how to proceed.

SIDE EFFECTS from second block happened the next day.
Also she did experience a side effect the day after, which was shocks running up and down from the injection site to the top of her legs. Electrical shocks. This could be a CRPS like symptom or sign.

She also had bad flares and didn't know if the block was worth it having the rebound flares. But two days later she felt a third block would be worth trying. We didn't try it however as we will proceed with caution before trying a third and longer block.


I find it interesting that some drugs used for CRPS work as well in some treatments for EM. Maybe there is overlap and link of symptoms and conditions for some patients. We may persue some NMDA blocker medication geared toward CRPS as well before more longer lasting tibial nerve block tests happen. We will weigh the risks and get advice from mom's neurologist.


The next block (if it happens) - will likely include steroids in the injection to make the block last longer.
If this kind of block works for mom, it might work for others. But of course you'd need to get a doctors approval for your particular case.

I suppose the big question is, how much thermal monitoring and cooling would still be required for the foot even if it was quite numb. Would other EM patients consider a numb foot with no pain but still needing possible chilling a benefit? (Mom's feet has zero pain when the corresponding tibial nerve was blocked.)

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It si great news. No pain !

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Third Block is happening today. The foot doctor will be using steroids in the mix which will make the block last longer.

Will update the results of our testing.

Other new developments include some tests apparently show "borderline autoimmune disease", maybe she has Lupus and it hasn't been diagnosed for example. We had a blood test at the neurologist last week so we will see what happens on that front as well.

MD doctors and neurologist so far have been positive toward the block tests and say we should continue with that route and find out what happens.

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Some early results. Left side needle hurt a little bit during the injection. Both feet were numbed with a steroid added to the mix this time. It may take a few days for the effects of the steroid to happen according to the foot doctor.

Mom was encouraged to chill her feet in water after the injection this time and she did that. Her feet were cool from the chilling in the water and didn't flare for some time. She still had some feeling under one of her toes when I touched it which could be normal. She acted like it was normal to still have feeling in the toe after the injection and I didn't do any light touching on the sole of her feet to see if she felt sensation there.

Injection happened around noon. At 1PM I left her and had some errands to run. She wasn't doing much physically and was napping from time to time. She continued to take her medications, although her MD said she could discontinue them if her feet were numb and she felt she didn't need them. The foot doctor felt she should still probably take Ativan even if her feet were numb. In any event I don't know if she needed to actually take that dose during the numb foot period, but she took the pills anyway. She said she took them "late" which might mean she actually missed a half a dose or delayed a dose.

Mom had a pain flare with elevated temperatures around 4pm about four hours later. I measured her blood pressure and it was high, likely from the pain and agitation. She chilled her feet in water and her blood pressure returned to a normal range from environmental chilling of the flare in water and without any medication to bring the blood pressure down.

Blood pressure was 130 /71 with 65 pulse after water chilling around 5:45pm.


That's the quick update. It seems of course that relief happens when the feet are numb, but flares happen when the numbing wears off. This shows us that she can function with the block, but of course temporary blocks may result in a flare rebound effect after the block wears off.

I suppose in theory if she had a much more permanent block she would not have a flare at all. This would not mean her feet would stay cold or normal however. It seems the block only blocks pain and doesn't affect temperature control at all. This is likely a good result so far with no adverse side effects so far.

Another development is I showed and had mom's foot doctor agree to prescribing Ketamine cream as a possible cream to relief her burning foot syndrome. We are having a mixture of Ketamine cream created from a compounding pharmacy. Her insurance won't pay for compounding drugs, so we will just pay for that out of pocket. We will wait until the effects of the third block wear off, before trying the cream to see if it does anything to her feet.

Her foot temperature stayed out of any dangerous skin temperature range. With chilling ahead of time and the block the feet seemed to stay chilled for a longer period of time. This seems to be fairly good as results go.

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Here's another update on the third tibial nerve block. Some of my comments above may have been overly positive toward the third block. I can say the flares seemed to be less, but we were doing more chilling, so that was likely from more cold water immersion.

Sometimes during the day of a tibial nerve block mom will not say to much and I will rely on her silence and lack of complaints of flares as a sign that things are going well. This was likely the case yesterday3-8-2016. I read her silence as a sign of the block working a bit better than it actually did.

12-30-2015

I asked her for example how much pain she had in her left foot during the first block and she would not answer because she had a lot of pain at that time in her right foot. Yesterday we tried this newer mix of blocking agents, lidocaine and a steroid in the mix. I'll have to ask the doctor what the exact amounts were as I didn't ask and note it down.

During yesterdays 3-8-2016 block

Mom complained about some flares which seemed to me to be rebound flares with the other blocks, so I thought all her complaints were about rebound flares after the block wore off. Most of her complaints were after 4pm 4 hours after the block. So we may have a difference in memories and experience.

For example if mom was sleeping a lot, and she seemed to be napping some, she may have not recalled the degree of relief she was experiencing and may have slept through much of it. So this can be a difference of opinion.

Today when trying to get a summary about how much pain relief she had and for how long she said she "didn't really notice any relief at all" from the last injection. Hmm. . .

I'm thinking maybe the steroids somehow changed the way her tibial nerve would respond. I don't know what that means exactly. She claimed she didn't really nap much and was in pain, although I saw that she napped a little bit so I'm wondering how much limited pain relief she had from the last block. I checked the toes, small toes for sensation and she could feel them, but a tibial nerve block may block the nerves in the sole of the feet more than the toes, so it's possible that she had some numbing, but I didn't test for it as a caregiver yesterday.

She said she walked a bit more than usual because she had to when I was away a bit more. So it's possible that she was up a bit longer getting something. This is a bit unusual compared to the first two blocks, so perhaps the mix did less good than it might have. The steroids in that mix may not work fully for a couple of days, and it may take some time for the steroids to take effect according to one comment made by the foot doctor during the injection. So it's possible we may see some positive delayed results.

In discussing steroids and mom's memory of taking them during her past 14 years she mentioned another thing that I can't recall but sounds a bit troubling. Not toward steroids but toward some other mystery drug she received. She said a demetologist that she saw once, put something on her feet that "caused her toenails to dissolve" and didn't help her burning feet at all. She claimed that medication caused her toenails to dissolve and she never returned to see him again. She said that also caused her liver to "stop functioning" and she went to the hospital and was put on steroids which restored her liver function. She mentioned that her friend said, it's very hard to get off steroids, but she said she was able to get off them. This was her recollection this morning.

So apparently she has not had bad side effects from steroids, but I wonder if the steroids or some how that mix of the tibial nerve injection changed for this third block and was less effective. I'm kind of wondering out loud here as I type, so I'll end this post and post more updates as I get more feedback from her doctor and we find out what happens with further block tests. Our next step is to try a Ketamine cream that is formulated to match one study cream given in one paper I read about on the internet. Her foot doctor helped us by prescribing this gel/cream and a local compounding pharmacy is making the cream. Hopefully I'll post more on the results of the test with the cream in a different thread.

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Here is another update. With the last injection including "steroids" in the mix, the effect of the numbing or what the steroids will do seemed to have a delayed effect. During the numb period her feet didn't seem to be as numb. For a few days afterwards she still experienced bad flares but fewer flares and pain when her feet were elevated. At least one day she had a part of the day with zero pain while her feet were elevated. The room temperature was 64 degrees and a fan was blowing so some good chilling was happening and she had been using some cold water chilling as well. That is one of the problems with these tests and having so many variables, it's really difficult to say you know what changes are making positive effects or if the treatment is doing some of this.

One other kind of curious side effect was the flare temperatures were at times lower. But at times also on the high side. She even had a flare in her face - from exposed light that was 105 F in skin temperature. Those kind of flare temperatures are usually not seen on her skin from FLIR readings or IR sensor readings. What was also interesting about that flare in her face, was she had a high temperature, but didn't complain about pain in her face, just the heat. She might have some elevated temperature readings for example on a patch on her leg one of the days, but no pain. So it seems that the block gets rid of or reduces the pain from the flares, but flares may still occur with less pain and in a normal resting period at least for one afternoon her pain level was zero instead of 7 which is quite a difference.

As many would know who have read my posts about my mom, she has a really bad version of EM which is chronic and she faces continued risks which could be almost without warning of a major level 10 pain flare that basically can happen at any time, her feet are lowered or she walks on them. So she often has 3 to 5 - level 10 pain flares a day, with a constant pain of about level 7. At one time when she seemed to have a flare from the looks of her feet she said her pain was in the level 6 category which is lower than she would normally describe it. That seems like a a sign of progress from the block in my opinion.

I usually look for sustained comments over more than one day. But during one of the days she was talking about getting a plane ticket and taking a vacation to Florida. Such suggestions would have been ridiculous before the block tests, she would have never stated that wish. So that to me is a sign that something interesting is going on with the blocks. She also wants to go outside in her wheelchair, to go shopping; this since the blocks. That is another good sign in my opinion.

We are at a part in the continued tests where we have to start to make a decision whether to proceed with more serious and possibly much more permanent blocks or stop perhaps to test any other untested medication approaches.

I have for example discussed and received a test cream that contains only 0.5 percent Ketamine and 1% Amitriptalyn. This is a very low dose an a topical dose with Ketamine in it. These kinds of creams at times have helped some with burning foot syndrome. Sometimes the lower dose creams don't even work or help. They are safer in theory because less or none of the drug makes it into the blood stream and the side effects which can be bad are less. We have that cream right now, but don't have any info on how these were used in studies or tests. Hmm. would I use it during a flare or in between flares? My thoughts are to try it on the last day of a 3 day pain patch cycle to start in case it enhances the drowsy effect of pain medication.

My thoughts are we could try a low dose of the cream as a test to see if the cream would help her or give a side effect perhaps of a burning foot reaction as that is a possibility with that cream. The cream may also add to a drowsey effect that would occur from opiod pain killers. Also some say the Opoids drugs will interfere with the effects of Ketamine. So there is a risk of side effects of course, but these seem to be minor.

One of the interesting things about the Tibial nerve block test are also the changes in outlook my mom has toward it. She thinks it's useful and wants more blocks. She also said she felt there was no need to test the cream, because we would be leaving an approach that works. Of course a more aggressive permanent block would be changing her body permanently creating a permanent numb condition. That's a big bridge to cross. So we are taking a cautious approach.

Another interesting thing she mentioned after this third block is her ability to walk as well was affected by this third block. This could be from the effects of the steroids in the mix. In theory the steroids added to the block could cause a numbing effect that could last several days or even weeks depending on the dosage of steriods and how they would affect the patient.

So that's the basic update. So far the tibial nerve block approach looks promising, but we are in effect creating a kind of numb diabetic foot condition, with a more permanent approach and that additional numbing could add more risk or unknown side effects. It's a rather radical approach. In theory based on some charts I've seen the tibial nerve might affect mostly the sole of the feet, so some feeling might still exist in the toes and big toe which might be enough to reduce the flare syptoms from the way we have seen the block work, but still leave enough feeling to allow good feedback for walking. The motor control for the foot is left intact with this kind of block as it's a sensory block not a sympathetic nerve block. So it leaves function, but of course impedes pain feedback.

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This is extremely interesting to me. I have found the only pain relief for me is nerve medication. I was talking gabapentin with great results for my pain and liked the fact that I could regulate how much I was taking day by day and stop taking when the flare up cleared up. (I have severe flare ups that go for 3-6mnths then very mild off and onfor a couple mnths) but I’m also a mother of 4 and found the drunk-like and emotional side effects to be too disruptive to my daily routines. So my doctor is trying me on another nerve medication called carbamazepine. I also have really bad back pain that has tentatively been diagnosed as ankylosing spondylitis. I have pain that radiates down the front of my legs and sciatica on both sides. The first two weeks on this new med has been amazing! Everywhere I felt any pain in my body was numbed. And not unlike what you said about your mom, I am mobile. These areas of pain are cold feeling, not to touch, but mentally like I’ve got ice packs on every sore spot, very weird sensation. I’m anxiously waiting for summer to see if it will hold up under the heat.

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Hmm. . . interesting.

Find a good medication approach that works for each person is of course important. For my mom's strange version of EM, we found Neurontin to not help at all. She takes opiod drugs and Cymbalta, as well as Ativan and other pills at times, a antihistomine at bedtime and also Motrin at times for headaches. 50mg Fetynol pain patch and norco are her main pain meds, but also she takes Cymbalta 30mg. During the tibial nerve block tests there were at least three "half doses" of pills she could have missed an not have needed. She took them anyway to be on the safe side from rebound flares. But also one of the times she didn't take a "half dose". My mom takes half doses of her medications every 4 hours instead of every 8 hours, which she says helps her even out the dosage (maybe that is just her perception) and the pills don't seem to "hit her as hard" by taking half doses. Another nice side effect of that, is if she did decide to take two half doses instead of one for a bad pain flare, it would still be within dosage guidelines on her prescription and not be a danger.

Another weird thing about my mom's condition is she was taking up to 120mg of cymbalta a day in the past, and that didn't seem to help and had some odd side effects at times. At least side effects my dad and I could see but she denied as happening, more demands, like of like hypermanic demands from Cymbalta at times.

Recently she had a her dose of cymbalta doubled by mistake at home to 60mg from her current 30mg for one evening and reported a great decrease in pain. She has been lobbying for a double dose of 30mg Cymbalta to help her pain and help her get more sleep. So that's something that has been happening on the pill front here.

Sometimes when we add a pill to the mix, the added pill will have a multiplying effect on the other pills, this according to some doctor reports on the net for other disease (CRPS youtube video). Where 1 plus 1 equals 4. That seems to be the case with mom in some ways. When she adds some other pills to the mix the need for higher opiod drug doses seems to decrease. But in our case, the baseline we have for pain management over the past 14 years is just getting a constant level 10 flare, down to level 7 for her normal pain level, which isn't really very impressive results.

Over time it's almost like her EM progressed and reacted differently to drugs. Some that didn't help may offer some relief if we revisit them. But each EM case seems to be different, and have it's own set of keys in medication to help deal with the symptoms. EM is an interesting and difficult condition to treat to say the least.

Hopefully every EM suffering patient will find a good option to at least reduce the symptoms of their diease and reduce the flares. Here's on more quick update I'll add from a "good day of the test. This photo shows a time when she had no pain, which is actually unusual for her even in the non flared state.

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Oh oh my goodness! Your poor mom. That’s exactly what my feet look like in summer so I feel her pain. Fortunately for me it usually only lasts for 3-6mnths then settles into manageable flares daily. Unfortunately narcotic pain medication isn’t an option for me. That would be a last resort. My husband gets mad at me for not taking stronger pain meds because he knows of I’m debilitated, the pain is horrible. When my feet were all split and blistered last summer he cried for me. Yes this is a strange condition. I take cytalopram, cyclobenzapine, propranolol, meloxicam and am assortment of vitamins. I found whenever we ate trying a new drug there is definitely a magnified feeling. I always take the first week totally off so I can adjust I find out levels out tho. I pray that you find something that can give your mom some quality of life. This kind of pain is not something Any body should have to endure. And you sound like an angel! What loving dedication to your mom. I hope you have a good support system. Carrying for someone suffering with cronic pain is no picnic sometimes. I don’t know your mom but I do know I can be downright miserable sometimes.



watchman said:

Hmm. . . interesting.

Find a good medication approach that works for each person is of course important. For my mom’s strange version of EM, we found Neurontin to not help at all. She takes opiod drugs and Cymbalta, as well as Ativan and other pills at times, a antihistomine at bedtime and also Motrin at times for headaches. 50mg Fetynol pain patch and norco are her main pain meds, but also she takes Cymbalta 30mg. During the tibial nerve block tests there were at least three “half doses” of pills she could have missed an not have needed. She took them anyway to be on the safe side from rebound flares. But also one of the times she didn’t take a “half dose”. My mom takes half doses of her medications every 4 hours instead of every 8 hours, which she says helps her even out the dosage (maybe that is just her perception) and the pills don’t seem to “hit her as hard” by taking half doses. Another nice side effect of that, is if she did decide to take two half doses instead of one for a bad pain flare, it would still be within dosage guidelines on her prescription and not be a danger.

Another weird thing about my mom’s condition is she was taking up to 120mg of cymbalta a day in the past, and that didn’t seem to help and had some odd side effects at times. At least side effects my dad and I could see but she denied as happening, more demands, like of like hypermanic demands from Cymbalta at times.

Recently she had a her dose of cymbalta doubled by mistake at home to 60mg from her current 30mg for one evening and reported a great decrease in pain. She has been lobbying for a double dose of 30mg Cymbalta to help her pain and help her get more sleep. So that’s something that has been happening on the pill front here.

Sometimes when we add a pill to the mix, the added pill will have a multiplying effect on the other pills, this according to some doctor reports on the net for other disease (CRPS youtube video). Where 1 plus 1 equals 4. That seems to be the case with mom in some ways. When she adds some other pills to the mix the need for higher opiod drug doses seems to decrease. But in our case, the baseline we have for pain management over the past 14 years is just getting a constant level 10 flare, down to level 7 for her normal pain level, which isn’t really very impressive results.

Over time it’s almost like her EM progressed and reacted differently to drugs. Some that didn’t help may offer some relief if we revisit them. But each EM case seems to be different, and have it’s own set of keys in medication to help deal with the symptoms. EM is an interesting and difficult condition to treat to say the least.

Hopefully every EM suffering patient will find a good option to at least reduce the symptoms of their diease and reduce the flares. Here’s on more quick update I’ll add from a "good day of the test. This photo shows a time when she had no pain, which is actually unusual for her even in the non flared state.

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Another quick update. . .

I found out today that the Flir One is giving false readings on temperatures it's giving for flared areas and even cooled areas of her feet.

This is in comparison to the CVS IR temperature reader which one might think would be more prone to give false temperature readings as it cost about $40. where the Flir One costs me $264.00, but it is a camera so it has all those visual features.

Another IR reader and the CVS were in agreement earlier (one the foot doctor brought), so I would have to go with the readings from the CVS IR temperature scanner, not the Flir One, not for now.

I checked a pain flare region with the Flir One camera and it read 104 or 105 degrees which would be rather serious and temperature for the other foot without a flare that had been chilled in water was 75 degrees. When I checked it with the CVS thermometer the temps of the flared area was 98.4 degrees in the hottest area and about 72 degrees on the cold area of the other foot. This means the lower readings are about 3 degrees off and the higher readings are 5 or 6 degrees off. I should probably complain to the Flir camera manufacturer of the defect. The good news about that fact is the "hotter" flares that were happening with the second block, were not as "out of control" as a thermo runaway as I had thought from the FLIR readings. This means there is significantly less thermo runaway with the Tibial nerve block than I previously reported. Which means the tibial nerve block, at least in my mom's case is safer than I thought.

My mom also had some other pain, but this may have been from excess chilling the other night and also may have been from a small fan that hit her feet from her bedside chilling setup. It wasn't clamped on as well as it should have been and she she moved a chair holding the fans, one of the fans tipped over and hit her right foot. It's difficult to know if that small fairly light fan did the damage or if some extra chilling did something to her right big toe, but there is some added damage and pain to the bottom of it. Kind of looks like a pre-frostbite blister in some ways and also like a cut that healed, but under the skin, not reaching out the the edge of the skin in another way. It causes a lot of pain whenever she has it painted with our normal pain cream. Well that's just another kind of diary update for now.

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Thanks so much for posting this.

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Okay, here's another update. . . this almost merits a different forum topic.

We are waiting and may do another block this Friday, per schedule, but I'm thinking it might be delayed, because we may have a different option almost as good in some ways, and maybe better in some ways.

My mom has been resistant to wanting to try any other last minute medical approaches to the block because, "it's working" so she seems to seek more blocks. Now of course this is a course of treatment which is going for a radical "no pain" by numbing approach. In effect trading burning foot for a kind of diabetic neuropathy symptom of numb feet, but perhaps as it's artificially produced, it won't affect motion or movement of the legs or feet, just feedback and feeling. Hopefully not enough to hurt walking. At least that is the goal.

One of the other possibly promising routes however is to try something less conventionally for "normal pain conditions". And by that I mean Ketamine and Amitriptyline cream. This has had some effectiveness for some EM patients but no effect for others.

Our plan for the cream approach, was to test this cream and we are talking about the weakest variation of this cream to start with; to see if it might help mom. The idea may be somewhat related to some treatment processes for other neurological diseases like CRPS. The cream we are talking about is 1 percent Amitriptyline and 0.5% Ketamine. Some doctors may be worried about the side effects and if it gets in your blood stream it may cause bad side effects. In theory the Amitriptyline might lessen the risks a bit and that is why it's in the mix. But we are not talking about intervenious infusions or some massive dose to treat RSD, we are just talking about cream for a burning foot problem. Some have even suggested this kind of cream may help some who have fibermeliagia. Some who have tried the low dosage of this cream described will perhaps experience no relief at all. Some may require a stronger dose and compounding pharmacies can create stronger doses with up to 10% Ketamine in the cream or topical jell. But it's probably a good idea to start low.

We have a prescription written by a doctor to try this cream and filled the prescription about a week ago. Mom finally decided it would be worth the risk to try it, and we decided to try with one foot at first and see if the side effects would be bad or if the cream would help.

11:50am applied cream to her right foot. She was experiencing a worse flare on her left foot but both flares were not with a really high temperature in her feet. We tried the non-flaring side first because some report a warm feeling when the cream is first applied and I didn't want to push a hot flare to a hotter place and create more pain.

12:20PM - 30 minutes later, no side effects and no heat from right foot, so she asked that I apply it to the left foot as well. I applied cream to the left foot as well, a thin layer as was listed. She started to feel her feet both warm up, but it was not uncomfortable. By 2PM she was stating something was going on with her feet, as if she was having less pain but she didn't want to talk about it much for fear she might focus on the pain and jinx the treatment in some way. She actually missed her pain medication schedule and took her regular 1/2 dose 2 hours late at 2pm instead of 12pm. We also delayed the pain patch as this was her pain patch day. I was going to delay it for a couple of hours, but her relief from pain was so good, that we didn't decide to put on the pain patch until much later in the evening.

She was feeling less pain, but didn't want to specify a number for the amount of relief. She wanted to go outside and go somewhere, either on the porch or in the car. We'd use a wheelchair. We went out into the cold clear air of the cold spring day. Mom wanted to go somewhere in the car, maybe the dollar store, so we drove there. Her feet were down in the car instead of up on the dash and I had the AC blowing on the floor of the car. When we stopped at the dollar store I left the car running and went inside while she stayed in the car. She said I turned up the thermostat a little to high when I left, to avoid possible pre-frostbite, so her feet were a little bit to warm. But she was able to keep her feet on the floor without much discomfort.

Before we went out she had some movement in her feet, perhaps from the late Ativan dose. And she had some movement in her mouth, which I watched and wondered if it was some kind of RLS like involuntary movement, but when I asked her she was just checking out a sore spot in her mouth, as she is expecting some new dentures this week. So it didn't seem like she had any involuntary twitching of her feet or mouth, maybe some movement in her feet. She was thinking much more positively and wanted to start thinking about doing things around the house as she was feeling like she would be recovering from the pain. This seemed to be hopeful and positive. She also had great movement of her toes and feet and could wiggle them freely and move them around. This is normal for her, so the ketamine didn't affect her ability to move her feet at all.

I made perhaps 6 report updates to the doctors via email during the day and evening. She also washed her own feet with a washcloth in her foot water and scrubbed her toenails with a soft toothbrush. She also later summarized her day by saying the pain was for all practical purposes low enough to not be a factor to stop her from activity. She said, her pain was virtually gone, at such a low degree on the scale, it was basically equivalent in her mind as a tibial nerve block. I thought she might have had a little bit more discomfort than if the block was fully numbing her feet. For all practical purposes the nerve blocks we have tried were probably no better than the results of the Ketamine cream which I found to be a bit shocking.

I was half expecting the cream would have no effect at all. I thought it might just be a rabbit trail that led to nowhere and was plesantly surprised by what I saw.

Later she said her feet were in their own state of euphoria, but her mind seemed to be fine and clear, with no side effects. Later in the evening she got into a bit of a depressed mood about a depressing movie that reminded her of a family drama issue with some relatives. She didn't stay in that state for long however and we simply turned off the movie. She had a point at about 10:15 pm where a flare started to come back and she put her feet in the cold water bath. She had no real need to chill her feet during much of the day, but was fatigued a bit and complained a bit of feeling dizzy at one point of time and also said her vision seemed to be a bit blurry and complained about her glasses slipping off her face while I was in the dollar store. A couple of weeks ago a blood vessle broke in her right eye, and that might be contributing to her blurry vision. She suffers a bit from dried out eyes as well from all the cool AC chilling that happens. At least she wasn't saying she was "seeing things", so this seemed to be no horrible sign of a side effect as far as I could tell.

Around 5:30PM we visited one of her friends and she put her feet on the dash to show them her feet. She felt her feet were not as swollen and red as a result of the cream.

She had a small cut like bleeding patch on one of her middle toes which was a small bleeding thing from pressure of blood in her foot or perhaps a small abrasion that happened. It was healed up by the evening.

Mom said later when I asked her if all these other pills were working much on her pain and how it compared to the Ketamine cream. She said that the difference in pain relief was really no contest. That the Ketamine cream relieved her of so much pain her feet were not screaming for attention and she didn't have to think about them and could just go and do something. She said that the Ketamine cream was in a completely different class of stopping pain than all the other pills, this include Norco, Cymbalta, and a 50mg Fentynl pain patch. Plus other pills. I had the impression that perhaps but this is just my early impression from a good day, the cream might work well enough that we might eventually be able to cease using all the other pills and only have the cream for her pain. This is a low dose of cream topically applied so in theory almost none of it will even get into the blood stream.

I've never heard of a person who had a lot of pain in their feet describe their feet as in a state of Euphoria before. Sounds like the NMDA blocking action took her feet out of hell and put it into some kind of state of heavenly euphoria.

So this seemed to be a good test and we will likely continue testing the cream to determine if there are any bad side effects and if it will continue to offer relief or improve her condition over time. Some have reported the cream working better or causing a change after 3 to 5 days. But this may only be incidental cases and there is no guarantees of course. It will be interesting to see what happens and we will have to determine the risks and rewards against pain with this approach compared to the tibial nerve block. I have a feeling if the next two days are as good as the first, we may delay the 4th tibial nerve block test and keep going the Ketamine route unless there is some compelling reason to continue to go with the nerve block route. I never would have thought 4 months ago that we might be facing two different opportunities to possibly completely change the way we deal with the chronic pain, basically finding a much better way to cope with it and drastically improve her lifestyle.

Also her blood pressure was normal, although we had one false reading that was kind of scary until I realized it was a false reading with three other readings. Overall it seemed she had 10 to 12 hours of relief and even after she had to chill the feet late at night around 10:30pm she said the chilling was much quicker and her feet felt better after a shorter time chilling them down. She felt there was some residual good happening to her feet even after she had a bit of a flare, and that flare occurred when she ate a spicey Arby Roast Beef Jr sandwich. She normally avoids beef because it may cause a flare. So that was a trigger than helped end her run of no pain for the day, but she seemed to recover from that faster, and took an 11PM dose of regular pills which may have helped a bit as well. She took her "pain patch" at 8pm which is 8 hours late. To take a pain patch that late and have no pain during a day when the pain patch is due to be changed is new and a good thing for her. Only the Tibial Nerve block has been anywhere as close to helping her with pain in the last 14 years. . . except for one other "fluke we had one afternoon" but that was isolated as well and didn't continue. . . or show us a means to keep getting relief.

13

I also want to state she had a remark that her feet felt like they had been varnished with the cream after it had taken effect. This is very much like a statement a person with numb diabetic neuropathy would state when their feet are numb according to one person I chatted with. So this is a good sign as that is the goal. I put a thin layer of cream on her toes, sole of her feet and on her heel area behind her foot. I didn't put cream on her legs or high up on her ankles at all. It was just on the red areas of her feet and behind her heel. I have read that the Ketamine cream may start with a hot feeling and then turn into a numbing feeling and that is exactly what happened to her feet. So apparently it worked for her condition. We will try another application of cream tomorrow Tuesday 3-22-2016 and report any other progress.



watchman said:

Okay, here's another update. . . this almost merits a different forum topic.

We are waiting and may do another block this Friday, per schedule, but I'm thinking it might be delayed, because we may have a different option almost as good in some ways, and maybe better in some ways.

My mom has been resistant to wanting to try any other last minute medical approaches to the block because, "it's working" so she seems to seek more blocks. Now of course this is a course of treatment which is going for a radical "no pain" by numbing approach. In effect trading burning foot for a kind of diabetic neuropathy symptom of numb feet, but perhaps as it's artificially produced, it won't affect motion or movement of the legs or feet, just feedback and feeling. Hopefully not enough to hurt walking. At least that is the goal.

One of the other possibly promising routes however is to try something less conventionally for "normal pain conditions". And by that I mean Ketamine and Amitriptyline cream. This has had some effectiveness for some EM patients but no effect for others.

Our plan for the cream approach, was to test this cream and we are talking about the weakest variation of this cream to start with; to see if it might help mom. The idea may be somewhat related to some treatment processes for other neurological diseases like CRPS. The cream we are talking about is 1 percent Amitriptyline and 0.5% Ketamine. Some doctors may be worried about the side effects and if it gets in your blood stream it may cause bad side effects. In theory the Amitriptyline might lessen the risks a bit and that is why it's in the mix. But we are not talking about intervenious infusions or some massive dose to treat RSD, we are just talking about cream for a burning foot problem. Some have even suggested this kind of cream may help some who have fibermeliagia. Some who have tried the low dosage of this cream described will perhaps experience no relief at all. Some may require a stronger dose and compounding pharmacies can create stronger doses with up to 10% Ketamine in the cream or topical jell. But it's probably a good idea to start low.

We have a prescription written by a doctor to try this cream and filled the prescription about a week ago. Mom finally decided it would be worth the risk to try it, and we decided to try with one foot at first and see if the side effects would be bad or if the cream would help.

11:50am applied cream to her right foot. She was experiencing a worse flare on her left foot but both flares were not with a really high temperature in her feet. We tried the non-flaring side first because some report a warm feeling when the cream is first applied and I didn't want to push a hot flare to a hotter place and create more pain.

12:20PM - 30 minutes later, no side effects and no heat from right foot, so she asked that I apply it to the left foot as well. I applied cream to the left foot as well, a thin layer as was listed. She started to feel her feet both warm up, but it was not uncomfortable. By 2PM she was stating something was going on with her feet, as if she was having less pain but she didn't want to talk about it much for fear she might focus on the pain and jinx the treatment in some way. She actually missed her pain medication schedule and took her regular 1/2 dose 2 hours late at 2pm instead of 12pm. We also delayed the pain patch as this was her pain patch day. I was going to delay it for a couple of hours, but her relief from pain was so good, that we didn't decide to put on the pain patch until much later in the evening.

She was feeling less pain, but didn't want to specify a number for the amount of relief. She wanted to go outside and go somewhere, either on the porch or in the car. We'd use a wheelchair. We went out into the cold clear air of the cold spring day. Mom wanted to go somewhere in the car, maybe the dollar store, so we drove there. Her feet were down in the car instead of up on the dash and I had the AC blowing on the floor of the car. When we stopped at the dollar store I left the car running and went inside while she stayed in the car. She said I turned up the thermostat a little to high when I left, to avoid possible pre-frostbite, so her feet were a little bit to warm. But she was able to keep her feet on the floor without much discomfort.

Before we went out she had some movement in her feet, perhaps from the late Ativan dose. And she had some movement in her mouth, which I watched and wondered if it was some kind of RLS like involuntary movement, but when I asked her she was just checking out a sore spot in her mouth, as she is expecting some new dentures this week. So it didn't seem like she had any involuntary twitching of her feet or mouth, maybe some movement in her feet. She was thinking much more positively and wanted to start thinking about doing things around the house as she was feeling like she would be recovering from the pain. This seemed to be hopeful and positive. She also had great movement of her toes and feet and could wiggle them freely and move them around. This is normal for her, so the ketamine didn't affect her ability to move her feet at all.

I made perhaps 6 report updates to the doctors via email during the day and evening. She also washed her own feet with a washcloth in her foot water and scrubbed her toenails with a soft toothbrush. She also later summarized her day by saying the pain was for all practical purposes low enough to not be a factor to stop her from activity. She said, her pain was virtually gone, at such a low degree on the scale, it was basically equivalent in her mind as a tibial nerve block. I thought she might have had a little bit more discomfort than if the block was fully numbing her feet. For all practical purposes the nerve blocks we have tried were probably no better than the results of the Ketamine cream which I found to be a bit shocking.

I was half expecting the cream would have no effect at all. I thought it might just be a rabbit trail that led to nowhere and was plesantly surprised by what I saw.

Later she said her feet were in their own state of euphoria, but her mind seemed to be fine and clear, with no side effects. Later in the evening she got into a bit of a depressed mood about a depressing movie that reminded her of a family drama issue with some relatives. She didn't stay in that state for long however and we simply turned off the movie. She had a point at about 10:15 pm where a flare started to come back and she put her feet in the cold water bath. She had no real need to chill her feet during much of the day, but was fatigued a bit and complained a bit of feeling dizzy at one point of time and also said her vision seemed to be a bit blurry and complained about her glasses slipping off her face while I was in the dollar store. A couple of weeks ago a blood vessle broke in her right eye, and that might be contributing to her blurry vision. She suffers a bit from dried out eyes as well from all the cool AC chilling that happens. At least she wasn't saying she was "seeing things", so this seemed to be no horrible sign of a side effect as far as I could tell.

Around 5:30PM we visited one of her friends and she put her feet on the dash to show them her feet. She felt her feet were not as swollen and red as a result of the cream.

She had a small cut like bleeding patch on one of her middle toes which was a small bleeding thing from pressure of blood in her foot or perhaps a small abrasion that happened. It was healed up by the evening.

Mom said later when I asked her if all these other pills were working much on her pain and how it compared to the Ketamine cream. She said that the difference in pain relief was really no contest. That the Ketamine cream relieved her of so much pain her feet were not screaming for attention and she didn't have to think about them and could just go and do something. She said that the Ketamine cream was in a completely different class of stopping pain than all the other pills, this include Norco, Cymbalta, and a 50mg Fentynl pain patch. Plus other pills. I had the impression that perhaps but this is just my early impression from a good day, the cream might work well enough that we might eventually be able to cease using all the other pills and only have the cream for her pain. This is a low dose of cream topically applied so in theory almost none of it will even get into the blood stream.

I've never heard of a person who had a lot of pain in their feet describe their feet as in a state of Euphoria before. Sounds like the NMDA blocking action took her feet out of hell and put it into some kind of state of heavenly euphoria.

So this seemed to be a good test and we will likely continue testing the cream to determine if there are any bad side effects and if it will continue to offer relief or improve her condition over time. Some have reported the cream working better or causing a change after 3 to 5 days. But this may only be incidental cases and there is no guarantees of course. It will be interesting to see what happens and we will have to determine the risks and rewards against pain with this approach compared to the tibial nerve block. I have a feeling if the next two days are as good as the first, we may delay the 4th tibial nerve block test and keep going the Ketamine route unless there is some compelling reason to continue to go with the nerve block route. I never would have thought 4 months ago that we might be facing two different opportunities to possibly completely change the way we deal with the chronic pain, basically finding a much better way to cope with it and drastically improve her lifestyle.

Also her blood pressure was normal, although we had one false reading that was kind of scary until I realized it was a false reading with three other readings. Overall it seemed she had 10 to 12 hours of relief and even after she had to chill the feet late at night around 10:30pm she said the chilling was much quicker and her feet felt better after a shorter time chilling them down. She felt there was some residual good happening to her feet even after she had a bit of a flare, and that flare occurred when she ate a spicey Arby Roast Beef Jr sandwich. She normally avoids beef because it may cause a flare. So that was a trigger than helped end her run of no pain for the day, but she seemed to recover from that faster, and took an 11PM dose of regular pills which may have helped a bit as well. She took her "pain patch" at 8pm which is 8 hours late. To take a pain patch that late and have no pain during a day when the pain patch is due to be changed is new and a good thing for her. Only the Tibial Nerve block has been anywhere as close to helping her with pain in the last 14 years. . . except for one other "fluke we had one afternoon" but that was isolated as well and didn't continue. . . or show us a means to keep getting relief.

14

Update - From Day 3 Ketamine cream test on mom's burning foot syndrome.

QUICK SUMMARY: The Ketamine cream approach has been abandoned after day 3 due to mood side effects.

SHORT CONCLUSION (pain relief from the cream was greater than all other medications she has tried, except the tibial nerve block.)

Ketamine cream in her case, was better than all the other drugs she was taking combined in controlling pain, and only freezing of the feet to a numb state or a tibial nerve block can compare. The tibial nerve block offers less side effects so far, so that is a far better option for her. Ketamine also could add to the effects of the other opiod drugs, so that could be a factor in it's effectiveness. I cannot say how much opiods this ketamine cream was as effective as, it may have been as effective as a 200mg pain patch or even more in comparison. Surely the amount of pain relief from her other pain patch would require a dangerous dose that would likely kill her before it would give as much relief as the Ketamine, but this is just my guess. So it was a strong pain blocker in her case, but not worth the mental side effects.

DETAILS:

She had the cream applied at 4pm. She had some pain flares, but no elevated Restless leg or foot activity.

She slept for 90 minutes in her evening nap, quite soundly. She had flares, which were related to walking or activity such as standing on her feet for a 15 minute period.

The feet responded to chilling in water quicker and reduced flare issues faster. So from a flare perspective things were improved, but not as much as the first day of the test.

She remarked about mood and mental side effects which she was experiencing from the drug. She took less of her other medication today as well, and missed her last half dose of pills altogether. She felt dizzy from quickly getting into bed, which could be a side effect that caused her to say she felt like she was drunk at that time.

She didn't have any alarming elevation in blood pressure or pulse readings.

She felt the feeling of depression on night one was a side effect from the cream. I don't know if the positive outlook or manic like state she had the second day was from the cream, but it may have been. The overall effect of these mood side effects was not impacting her overall positive outlook of the results of the pain. I feel her feelings of progress from the cream and feeling to do more and get more done was a result of pain relief, not affect changes from the cream acting on her mind. If it was affect mood effected side effects her depression would have caused her to have a negative outlook as if the chance of going out and doing more was gone, but that was not the case. So her overall mood was positive toward the results of the cream which at times was as good as the tibial nerve block tests. She had long lasting results but the cream did not stop side effects from poor diet choices that could still trigger bad flares. The bad flares were not as bad as they would be without the cream. She was more tired as well and got more sleep likely from magnified effects of the cream and the other medications she was taking. The cream and other pain killers will add to the effects of each other, so it's probably a good idea to reduce other pain medications if you are going to try this cream.

I'd liken the added sleeping effects to that of a 100mg pain patch vs the 50 she was taking. With a 100 mg patch which she has tried in the past (2013) she had more drowsiness, much like she experienced with the cream at times, but the side effects of rapid heart beat from the 100mg pain patch were not evident with the use of the Ketamine cream in her case. So the cream appeared at least with my superficial observation to be safer short term from a side effect point of view, if we took mental side effects out of the equation. This of course does not speak toward long term side effects of using the cream.

We have abandoned the use of the Ketamine cream and won't be going with that medication toward treating her burning foot disease. Her comments of it being better than the other pills are outweighed by side effects of this cream and this is a very low dose of this type of NMDA blocker. It's always a good idea to take the lower doses and start slow for side effects. Some with very bad pain conditions are getting doses of this kind of cream at 20 times higher dosage rates in Europe.

In any case, it's probably a good idea to have a doctor take and do blood work before you might try a ketamine cream approach and during the use of the cream to see if it's reaching your blood stream and watch out for possible side effects.

As a rule of thumb, we often will quickly abandon medical approaches when bad side effects are happening. If the approach helps, fine, if it's not helpful, don't waste time on pills that can harm you.

We don't stick with a "tough out bad side effects" approach, and generally will quickly leave the medication, taking a conservative approach to medication. Mom also said some things to the effect of she liked the effects of the cream on her feet in reducing pain, but she felt most drugs including other drugs she is taking are better off being stopped if it's possible to get off of them. She mentioned some of the other drugs which didn't work out and had bad side effects in her past as well and although she is stuck with her current drugs to avoid the massive pain flares, of course she had an overall attitude that it's better to take fewer drugs and even no drugs if that is possible and one can get by without them.

This of course is just my opinion based on our tests, and I'm not a medical doctor so there is the usual disclaimer. Will update further with more results from further tibial nerve blocks as they happen.

CONCLUSION

We will continue to post updates on further tibial nerve block tests as they occur.

15

Friday March 25 - Tibial Nerve Block number 4

Different blocking agent was supposed to make the effects of the block longer.

Mom thought the block didn't work at all. This was interesting. She still complained of flares.

I wondered if this was due to that different blocking agent not working or was it some kind of lingering side effect from the Ketamine Cream.

She claimed it didn't work at all and felt me brush the bottom of her feet with a light corner of a tissue paper which shows she still had feeling and sensation on the bottom of her foot. She complained about pain flares. The next day she slept a lot with the regular medication making her perhaps more drowsy. She was taking less medication or delayed doses and the medication seemed to effect her pain better and allowed her to catch up on her sleep.

Easter Sunday she had some normal pain flares and was doing cooling as usual with water immersion at times to cool down a flare. I tried using the corner of a tissue on the bottom of her foot again on Sunday. This was during a flare, which might not be the best time to test. She complained that the tissue caused sharp jolts to travel up her legs a marked super responsive result which may have shown that the 4th block did have some effect on her feet a bit, but not enough to be effective and offer relief. She stayed in her chair for a very long time during the day of the 4th block as well avoiding walking or standing. To avoid pain.

Forth tibial nerve block test used Marcaine 0.5% for nerve block.

More updates and results to follow. I had a good discussion with the foot doctor regarding future steps and the possibility of a permanent block and it's possible pros and cons. He's reluctant to go the permanent nerve block route because it could of course cause side effects that we have not seen yet. For example it might cause her feet to become so numb she would be unable to use them or walk. If that happened she might have more problems getting around and need a brace which might be to difficult for her to wear, due to her strange EM condition. So that's obviously a risk. He was actually thinking that we should perhaps try the Ketamine cream route again perhaps in a month or so. We discussed that a bit. It could be difficult to do that again as side effects of the cream were not enjoyable to mom and she didn't want to have the cream affect her thinking processes. Side effects of blurry vision continued through Sunday, but that might be due to other factors. It may be clearing up a bit and I'll find out more over time and she may see an eye doctor to examine her eyes as well.

There could be a chance that if I applied the Ketamine cream on a smaller area of her foot it would still work and provide adequate numbing, without perhaps affecting her mind with side effects. Over time the mind might adjust as well, but we tend to balk at side effects and medications and tend to avoid them once we experience them.

There may have been a kind of permanent change or adjustment to her condition. It might not be long lasting. But it seems her regular pain medications at least cause her to get more relief and sleep during the day. It could be that the regular opiod drugs are not more effective since the Ketamine cream test. She seems to skip more doses because she is not in need of them or forgets them or is sleeping. So that may continue and may be a good side effect from the three day foot cream trial.

16

I put ketamine cream 1% 4 times a day with no side effects at all. It is helping for the pain.

17

I just want to say I have been reading so many of your posts and you are so knowledgable about EM, thank you so much for taking the time to share with us. And you are a great son, what your mom has to go through is terrible but she is lucky she has you. I don’t even know I can do half of what you do even if its for myself. Please keep it up, sending you and your Mom my support…

18

Hey everyone here’s a recent update. The foot doctor who gave diagnostic nerve blocks to the tibial nerve has not been with us for some time. He was driving an hour to see us, which is a long way from his office. Mom started up getting nerve blocks again and claims they help her. But her new foot doctor gives them in the too of her feet by the center area behind the toes. He has given her at least 14 blocks this way with diffeeent formulations at times. She claims they help her and she seems a little more active. The ketamine seemed to reset her opiod tolerance to a lower level and the opiods which she still takes hit her harder even without the ketamine one year or more after the three ketamine tests with ketamine and zero amitriptyline in the dream we tested. The problem with the ketamine cream which was great, is for her it changed her ability to walk and made her more unsteady with her gate and she has more trouble walking. So the ketamine for my mom was likely doing more damage than good. But it did seem to permanently reset her opiod tolerance and that has lasted. But I need to mention one more thing. Mom does weigh less now she is way down to 113lbs and not used to be about 142 back in 2014. She may be getting greater effect from the opiod dose because her body weight has dropped. If you are older or have less weight you may have a stronger reaction to prescription medication. She can eat and eat her restricted diet a lot of food and take s long time eating it and no matter how much she eats she burns off the calories a weighs a lot less. It’s difficult to say where all the fat is going or how it’s leaving her body. It’s likely from high metabolism to generate heat in her feet, which of course isn’t wanted but a part of the EM condition or to keep the rest of her body warm while facing chilling effects on her feet,

For mom almost any drug that dilates the blood vessels will cause massive flares occur she takes some things like baby aspirin now which seems to help her (accordingly to her) But I’m not sure how much baby asperin helps or what they are actually doing for her. Recently we found a contrast agent for a Cat scan of her bowels causes a massively immediate flare and pain from her feet to her knees. The swelling was restricted to her feet when that happened, but her pain extended up to her knees in the ER unit. The effect was immediate and very bad from the contract agent which hasn’t iodine in it, isovar-370 or which is the name of the drug if my memory is correct. I can verify that if you need the exact contrast name. So any vascular dilators will make her flares go off or move around her body, this now includes: Potassium, metropolol - which in theory should be better for her than lisinopril but it isn’t. Both fast and slow acting metropolol is bad news for her. Blood thinners make it worse like Heparin. So these things are on her adverse reaction list of drugs which she should not take.

The amitriptyline gave her bad side effects and it acts as an antagonist much like Risperdol against 5ht/serotonin receptors. Its bad enough to not be considered safe for her. It’s been a while since we had Amitriptaline. We banned it from her as we had side effects from the ketamine and amitriptyline mixture on her feet, but I can’t say the amitriptyline dose at that low level which isn’t lower than what people would take orally caused bad flares it was other side effects which made it unacceptable for her. But amitriptyline has affected or cause EM with some reports and the slight warming of the feet when the cream is applied with the mix is likely due to the effects of antagonism it has in 5ht nerve receptors in my lay opinion which may not be accepted by any doctor as I’ve only gone over this with one doctor. That doctor disagreed with me. So to me amitriptyline is not worth the risk, It has caused some members here to have EM symptoms appear or get worse.

For some however it has worked a bit and helped them which is a mystery to me of course but that’s how EM can work. One drug might help one person and hurt another one. Amitriptyline for some may be a kind of precursor test they might take to find out if it may cause EM to get worse. It seems to be less dangerous than rispedone at least for mom as it’s effects may be reversible. So I’d venture to guess with my limited knowledge as a reader and care giver than it’s not within the risk. My mom also was taking Xanax in the last for fear and anxiety, back in the mid 90s and that’s caused minor burning foot like symptoms with discomforts and not pain. That was discontinued Ron stop the flares and he her eel resolved. But that was a sign.

And unfortunately although we follow side effects and discontinue drugs, if bad ones appear we didn’t realize that one mental health drug causing a flare problem mightn’t be a sign that other nerve pills might csuse EM. We didn’t even know what’s EM was back the next before her second onset of major flares happened in 2002.

My thoughts on medications but this may only be benefit a very small numbers of em suffering patients. (For a quick read you may want to skip the rest of this.)

So I figured you have a minor flare from one nerve medication my suggestion is try to avoid other similar acting medications or as many nerve medications as possible, Keep in mind my advice is just friendly layman advice and not medical advice from a doctor. Seek a doctor to verify any medicine changes for you’re particular condition, I’m telling you about my mom’s peculiar case of EM.

MY GRIPE FEST TIME (you may want to skip this as well.)
In a better and fair a just world the makers of Risperdol wouldn’t have been sued and paid for all this mess and he’ll they out us through taking out the productive years of three people in our family for 16 years now. But we don’t always live in a fair world, sometime soon bad things will happen. Where we live, in Michigan, the drug companies are immune from lawsuits unless fraud can be proven. Ironically if I grew breasts as a male from Risperdol I could be a party of a federal settlement, but we have no hope of suing them for the burning foot hell that medication threw us into. And who wants to be in a many years lawsuit to try to get s one justice or help?

So even if we had the ability to have a lawsuit, it would still be a challenge to go through the long draw out process.

Anyone living in Michigan is a test dummy for the drug companies. A doctor can test any pill off label and hurt you and your only recourse is to sue the doctor within two years and the drug company walks away free of any liability. Michigan therefore is perhaps the only state in the USA where we are blocked from the courts to get redress of our grievances from drug damage. We can sue, we just can’t win.

There needs to be a lawsuit against the drug companies and then when its lost in the Michigan Supreme Court - a lawsuit against the state of Michigan new should occur in federal court with the the same reasoning as was used to give gay marriage rights across the nation.

We should as patients have the same equal protection from the courts enjoyed by other citizens in the USA. But we don’t. Thank a republican Governor for that and his republican friends in office back in 1996. They stripped away our rights to the courts for tort regress against the drug companies.

I did go so far to say if you have a bad disease and are being toke to take a lorn of drugs off label, move out of Michigan and liven in another state. Just picture a crash dummy but it’s for drug companies. That what every citizen of Michigan is I need this state legally. Just another test dummy. I guess that’s progress for some.

Now of course some are supposedly genetically predisposed to a band drug reaction, which of course can’t be rare and may only effect a few people. Of course from a non bias standpoint one could say well that’s just yours bad luck. And blame your genetics it doesn’t happen. And as a jury person I wouldn’t have to wonder with an objective hat on not as a victim but a small a normal person looking on what would a jury say? Well maybe my mom isn’t only one in a million or one in ten million or even fifty million affected by Risperdol. Maybe it’s a very safe drug as wast tokd to us when we took it. And maybe it’s Justin some people win the paint lottery and it’s our tough luck. But when your family’s affected you cant help but wonder if some kind of of court actions would at least help a bit with the added financial burden and perhaps compensate you for some of the pain and suffering that happened.

I have to admit as a objective person stepping back from our point of view. That a case against a drug company for EM would be difficult to prove. When I look at a person for example who has MS, I’d say ohh that’s bad luck for them. Not that we didn’t feel empathy for those suffering there isn’t just not much a friend can’t do to try to help or solve some rare disease problem.

So the average person may just buy into the to view that it’s just bad luck, EM is rare, and drug induced EM is event more rare. Perhaps one in a million or so in rareness, so it’s understandable that’s some even doctors will say we’ll its just your bad luck and you were genetically predisposed to suffer.