I've met about 200 people with spinal cord tumors similar to mine. A dozen or so of those people have had tumors grow where they had epidurals. Some others had other trauma as well. It certainly doesn't account for all cases of spinal cord tumors. As few a number of people that end up with these tumors I guess it will be a long time before they can determine the cause.
I had an epidural in 2000. They re-stuck 5-7 times. Went out of surgery room to get final needle. I had CFS leak following the epidural. Blood patch after. My tumor site coincides with the epidural. The slow tumor growth coincides with the epidural time as well. I have no other health issues as well. I have been shocked to hear a lot of stories like my own.
I'd encourage any woman with increasing neurological deficits that start sometime after having an epidural to go and ask for a full thoracic and lumber MRI. See a spine chart to see what may happen, commonly it will be a loss of motor function below the waist. Tumors are scary, not catching this tumor is not something you want to happen. My neurologist initially did a X-ray and an EMG, saw that I had a bulging disk. Because of the rarity of having a spinal tumor, he just told me that I had a bulging disk, that I likely picked up something too heavy. He said it would heal over time. So, I ignored my neurological issues thinking they would go away over time. That was not the case.
Someone is probably much more likely to be eaten by a shark or be stuck by lightning than have this happen. But, there is a possibility though of it happening, and it still bothers me. I feel like I have an obligation to say something. Maybe speaking up makes me feel like less of a victim. Maybe it will help someone else, I'm not sure. But it's time to speak up and then put it behind me.
Thursday, May 7, 2015
Pulmonary Embolism
I've been away dealing with blood clots to the lung. Will be back sooner or later. :) New posts will follow. Feeling better, exercising when I am able. Best wishes.
Wednesday, October 1, 2014
The Opiate Drop
I'm one week out of no opiates or pain killers. The neuropathic pain can be unpleasant and scales. It's obvious my cortisol levels have struggled to keep balance. For now, I'm waiting a couple weeks to see how stable I become. Overall, even though perceived pain is worse, I am more mobile, which is encouraging. Stress does seem to increase at unexpected times, perhaps withdrawals, and that sends the pain loop through the roof. Then I whine and cry.
Tramadol withdrawal in someone with low functioning adrenal glands is brutal in itself. There have been sleep disturbances and general sadness here and there but I am rebounding. The obvious issue for me is the stress that the pain is putting on the body. It causes withdrawals from both the opiate loss aspect and the loss of added serotonin (happy chemical) and norepinedrine.
GABA at night helped some with sleep disturbances.
Overall, I've been looking at natural pain relievers. I've tried GABA during the day. Makes me sleepy. DLPA to boost endorphin production. Nothing gives significant relief. I've tried high fat diets, high protein diets. Diet is probably one of the better methods for pain control.
For this week, I'm back to a longevity diet. You can google Okinawa Diet, Sardinian Diet, etc. Primarily plant based. With some added protein and fats. I seem to function better on these two diet. There is a Venn Diagram if you look up the Blue Zone on Wikipedia.
I am adding coconut oil to that diet. I know I'm burning a lot of cortisol. It makes sense that you need more saturated fat to make cholesterol to support the adrenal cascade. Coconut is full of saturated fat but also low in omega 6. I'm not entirely sure I'm not getting nerve compression from the tumor of the spine. Omega 6 do encourage inflammatory agents.
I do eat protein, beans and nuts. Though I get less issue of those than meats. I also add a little fish and pork and chicken here and there. Pork is a good fatty meat product.
The problem is with adrenal fatigue, we don't process sugar well. So any sugars (carbs) for me seem to be problematic. I've tried combating that issue with a high protein (high quality grass fed, omega 3s) but it seems to make the pain loop worse. I'm not sure why, being that a combination of amino acids in proteins make endorphins (natural painkillers). I can theorize that any inflammatory agent makes the tumor swell which makes the pain reaction worse? It's the only plausible thing I can think of at this time but who knows.
Struggling to get my caloric intake to baseline. Will continue to look at those ratios and get back on it. Now I'm probably at 1000 calories, 1200 on a good day. Not burning nor using foods as efficiently as I want. Doc will take an A1C and see where my levels are this weekend.
Tramadol withdrawal in someone with low functioning adrenal glands is brutal in itself. There have been sleep disturbances and general sadness here and there but I am rebounding. The obvious issue for me is the stress that the pain is putting on the body. It causes withdrawals from both the opiate loss aspect and the loss of added serotonin (happy chemical) and norepinedrine.
GABA at night helped some with sleep disturbances.
Overall, I've been looking at natural pain relievers. I've tried GABA during the day. Makes me sleepy. DLPA to boost endorphin production. Nothing gives significant relief. I've tried high fat diets, high protein diets. Diet is probably one of the better methods for pain control.
For this week, I'm back to a longevity diet. You can google Okinawa Diet, Sardinian Diet, etc. Primarily plant based. With some added protein and fats. I seem to function better on these two diet. There is a Venn Diagram if you look up the Blue Zone on Wikipedia.
I am adding coconut oil to that diet. I know I'm burning a lot of cortisol. It makes sense that you need more saturated fat to make cholesterol to support the adrenal cascade. Coconut is full of saturated fat but also low in omega 6. I'm not entirely sure I'm not getting nerve compression from the tumor of the spine. Omega 6 do encourage inflammatory agents.
I do eat protein, beans and nuts. Though I get less issue of those than meats. I also add a little fish and pork and chicken here and there. Pork is a good fatty meat product.
The problem is with adrenal fatigue, we don't process sugar well. So any sugars (carbs) for me seem to be problematic. I've tried combating that issue with a high protein (high quality grass fed, omega 3s) but it seems to make the pain loop worse. I'm not sure why, being that a combination of amino acids in proteins make endorphins (natural painkillers). I can theorize that any inflammatory agent makes the tumor swell which makes the pain reaction worse? It's the only plausible thing I can think of at this time but who knows.
Struggling to get my caloric intake to baseline. Will continue to look at those ratios and get back on it. Now I'm probably at 1000 calories, 1200 on a good day. Not burning nor using foods as efficiently as I want. Doc will take an A1C and see where my levels are this weekend.
Wednesday, September 24, 2014
The Effect of Opiates on the Adrenal Cascade
Hey everyone. I wanted to post some articles I've found. I've had moderate adrenal symptoms over the last 15 years, which I'd maintained through diet and lifestyle choices (no meds then). I do have major spinal cord injury and did undergo radiation 2.5 years ago. During radiation I was on a large steroid dose and felt "normal". After pulling the steroid dose, I did not do well. The adrenal symptoms largely imitated spine damage, so I did not understand fully what was going on in my body. It cost me a lot of time spent on pain management instead of adrenal support.
My nerve pain perception normalizes when cortisol is normal and it seems to amplify as cortisol drops. The worse my adrenals are, the harder it is to deal with pain.
I dealt with pain using ibuprofen post surgery, but at the radiation damage began to heal my nerve pain went through the roof. I eventually went to opiates. Tramadol is a biggie for people with permanent nerve issues. I tried other things as well, I ran through all the different options. I noticed every time I'd try an increase in opiate dose the adrenal symptoms got worse. At one point my bp was 90/40, so I started to pull myself off the opiates. I had no idea my issues were adrenal, so I didn't know what to look for. When I started Tramadol, I did feel better initially. I honestly would not say I was ever on a large dose of pain meds, 150 mg Tramadol daily at highest.
At any rate, if you have adrenal issues and you take pain medications I am just posting a word of extreme caution. Find a good doctor you trust with your adrenal issues, get regular tests. I don't think it's common knowledge that opiates can cause HPA dysfunction, it's something you have to dig for.
Opiates should not be dropped cold turkey.
I don't like to be presumptive. However, I wish someone had relayed this info to me 2 years ago. So I feel an obligation to pass it along.
Articles:
Adrenal insufficiency in acute oral opiate therapy:
Altered HPA Axis Responsivity in Heavy Opiates (Cocaine):
(I realize people aren't taking cocaine for nerve pain but the HPA information seems somewhat relevant in any case).
Tramadol Induced Adrenal Insufficiency:
Cortisol Screening in Pain Patients:
Looking at it from a pain management side. This advocates using opiates to keep cortisol levels from consistently rising and causing adrenal problems: "Patients on opioids who complain of poor pain control also should be screened, because adrenal corticoids are necessary for opioid receptor binding and maintenance of the blood–brain barrier."
Search terms: HPA axis, opiates, adrenal, adrenal insufficiency. There are some further notes on PUBMED. If you dig you can find some different articles.
I'm not going to say I know whether or not it's best to abstain from opiates, nor am I here to judge. I think with certain types of pain, it's possible that opiates might work in your favor. I know in my case, with Tramadol, it created a severe HPA disregulation and each time I take opiates my symptoms seem worse instead of better. I think the take home is that if you are on opiates, you do need to be carefully monitoring your adrenals if you have adrenal problems. So, I'm still not done studying the issue yet, but I think it's worth an open dialog. Best wishes.
ps- in order for me to survive the tramadol insufficiency, I was put on hydrocortisone 20mg daily. Broken up over 4x daily and an adrenal extract containing licorice. I do not believe I could have come off the tramadol without the added adrenal support. My symptoms were nearly identical to the female listed in the tramadol induced adrenal insufficiency article above. Each time dropping the medication was a punch in the gut. It was not easy to come off of and it took time for my body to regulate again. (I carefully self monitored my blood pressure throughout the process).
ps- in order for me to survive the tramadol insufficiency, I was put on hydrocortisone 20mg daily. Broken up over 4x daily and an adrenal extract containing licorice. I do not believe I could have come off the tramadol without the added adrenal support. My symptoms were nearly identical to the female listed in the tramadol induced adrenal insufficiency article above. Each time dropping the medication was a punch in the gut. It was not easy to come off of and it took time for my body to regulate again. (I carefully self monitored my blood pressure throughout the process).
Tuesday, September 16, 2014
Posted this at the spine forums, but I am going to post it here too:
Symptoms of adrenal insufficiency: fatigue, weakness when standing, low blood pressure, hypoglycemia, aversion to touch, light, pain all over sort of feeling. The disruption of aldosterone will cause salt issues, when my cortisol is low I cannot hold fluids. LOW CORTISOL MAKES NEUROPATHIC PAIN MUCH WORSE. So, if I had fatigue and the symptoms above, I would definitely try to save 150 bucks to get a 4x cortisol test. You can get a blood pressure cuff and see if your bp is resting low. It's low blood volume causing your bp to be less. Bringing the adrenal function up, brings the bp up. I got tired of standing and blacking out.
It's a combination of cortisol results and symptoms that can give an idea of how the adrenals are functioning.
I know a couple of us here have had this same discussion, nothing makes us feel better but steroids. I remember specifically two others with damage at the t10 level as well who said they had crippling fatigue as well. There is not good documentation (that I've found so far) regarding what exactly that means for us, but it does seem to be common knowledge that damage to the t10 can cause issues. I don't have hard citations on that, will continue to look. Although pubmed has some documents on the matter. (Keyword:cervical adrenal insufficiency for example). So its not only damage to the t10 where adrenal issues show up.
If the adrenal insufficiency is mild, you can treat it naturally. Dr. Wilson has a book on adrenal fatigue that covers the natural options for boosting cortisol and adrenal function. If it's severe or bordering addison's disease, you will probably need hydrocortisone or steroid therapy. I'm going to learn a bit more before I make any kind of official post but I'm off for a bit, trying to get my adrenal glands back up to baseline.
____ For those on the fence, maybe slight fatigue and aches and pains. For your adrenal cascade, you need Vitamin C, B5 for stress moderation, and fat for cholesterol production. Cholesterol makes cortisol. I've been using coconut oil for this. Then you need the other vitamins in normal amounts or a good multivitamin. Salt in the morning to help the adrenals and avoiding sugar as much as possible. I end up taking my multivitamin at night as sometimes vitamins seem to excite the nerves and make them more sensitive. So I do it late when I know I'm not up walking much anyway.
I'm sorry this post is a bit all over the place. I'm still tired a lot and will be resting. As I get the right levels of adrenal hormones again, I should be up on my feet more.
If anyone sees any incorrect commentary or general thoughts, you can post a comment below for others to read. Best wishes.
Symptoms of adrenal insufficiency: fatigue, weakness when standing, low blood pressure, hypoglycemia, aversion to touch, light, pain all over sort of feeling. The disruption of aldosterone will cause salt issues, when my cortisol is low I cannot hold fluids. LOW CORTISOL MAKES NEUROPATHIC PAIN MUCH WORSE. So, if I had fatigue and the symptoms above, I would definitely try to save 150 bucks to get a 4x cortisol test. You can get a blood pressure cuff and see if your bp is resting low. It's low blood volume causing your bp to be less. Bringing the adrenal function up, brings the bp up. I got tired of standing and blacking out.
It's a combination of cortisol results and symptoms that can give an idea of how the adrenals are functioning.
I know a couple of us here have had this same discussion, nothing makes us feel better but steroids. I remember specifically two others with damage at the t10 level as well who said they had crippling fatigue as well. There is not good documentation (that I've found so far) regarding what exactly that means for us, but it does seem to be common knowledge that damage to the t10 can cause issues. I don't have hard citations on that, will continue to look. Although pubmed has some documents on the matter. (Keyword:cervical adrenal insufficiency for example). So its not only damage to the t10 where adrenal issues show up.
If the adrenal insufficiency is mild, you can treat it naturally. Dr. Wilson has a book on adrenal fatigue that covers the natural options for boosting cortisol and adrenal function. If it's severe or bordering addison's disease, you will probably need hydrocortisone or steroid therapy. I'm going to learn a bit more before I make any kind of official post but I'm off for a bit, trying to get my adrenal glands back up to baseline.
____ For those on the fence, maybe slight fatigue and aches and pains. For your adrenal cascade, you need Vitamin C, B5 for stress moderation, and fat for cholesterol production. Cholesterol makes cortisol. I've been using coconut oil for this. Then you need the other vitamins in normal amounts or a good multivitamin. Salt in the morning to help the adrenals and avoiding sugar as much as possible. I end up taking my multivitamin at night as sometimes vitamins seem to excite the nerves and make them more sensitive. So I do it late when I know I'm not up walking much anyway.
I'm sorry this post is a bit all over the place. I'm still tired a lot and will be resting. As I get the right levels of adrenal hormones again, I should be up on my feet more.
If anyone sees any incorrect commentary or general thoughts, you can post a comment below for others to read. Best wishes.
Monday, September 15, 2014
Tramadol Induced Adrenal Insufficiency
General Info on Adrenals (Anyone with fatigue should read)
I want to wait to post something more detailed here and in the forums, but for now I'm posting a short reply. I want to say to my spine trauma friends and to anyone with general fatigue, to make sure you are nourishing your adrenal system. If you show signs of severe fatigue, hypoglycemia, weight gain, intolerance of stress, cold, light, please look into "Adrenal Fatigue". Read books such as Dr Wilson's book on adrenal fatigue to start. You can order a saliva test to see how you cortisol is responding. Seek out a good nautropath who has an good understanding of the adrenal glands.
This article is a good basic overview: http://www.lef.org/protocols/emotional_health/stress_management_01.htm
Adrenals and Opiates/Tramadol
*Adrenal issues (low cortisol) has been causing my neuropathic pain to be severely amplified. Taking more opiates made it worse. Watch your adrenals on opiates and tramadol. If your adrenals are strong and you are handling it well, great, but if you get weaker and weaker then seek out help. B5, Vitamin C, and healthy fats are especially important for the adrenal cascade. Avoid sugars, eat fat/carb/protein each meal, split meals up to try and keep blood sugar more even. Chromium can help. Reduced adrenal function reduces body's ability to deal with blood sugar stabilization. Regular sleep and salt supplementation is important.
I have not had ANY abnormalities show up on bloodwork except for low vitamin D and over time higher prolactin. It can easily be missed. I ignored my cortisol saliva results for a while because they were borderline normal. It spiraled down quickly. Check your Blood pressure, if it's low and you are too tired and weak to stand often. Please work on researching this issue.
The results on opiates are mixed. There's virtually no record of tramadol and adrenals except for the once patient and the additional study below.
This is an endocrinologist paper on a case of Tramadol induced adrenal insufficiency. My symptoms were identical to patient in paper, high prolactin and low cortisol, as well as the abdominal cramping. http://hal.archives-ouvertes.fr/docs/00/66/08/93/PDF/PEER_stage2_10.1007%252Fs00228-011-0992-9.pdf
I was prescribed Hydrocortisone and adrenal support formula to raise my natural cortisol levels and immediately began slow reduction of tramadol. I will report back in a couple months to see if my levels began to stabilize at all. Tramadol withdrawal itself is stressful on the body. It should never be stopped cold turkey. Small reductions in the drug over time will minimize stress.
My cortisol was also low on ibuprofen. I obviously had adrenal issues to begin with, the medications made the issue more difficult for me. That is all I am trying to say about it. However, I've seen fellow spine tumor patients presenting the same symptoms, only better on steroids. They have a right to know that this is a possibility.
I want to wait to post something more detailed here and in the forums, but for now I'm posting a short reply. I want to say to my spine trauma friends and to anyone with general fatigue, to make sure you are nourishing your adrenal system. If you show signs of severe fatigue, hypoglycemia, weight gain, intolerance of stress, cold, light, please look into "Adrenal Fatigue". Read books such as Dr Wilson's book on adrenal fatigue to start. You can order a saliva test to see how you cortisol is responding. Seek out a good nautropath who has an good understanding of the adrenal glands.
This article is a good basic overview: http://www.lef.org/protocols/emotional_health/stress_management_01.htm
Adrenals and Opiates/Tramadol
*Adrenal issues (low cortisol) has been causing my neuropathic pain to be severely amplified. Taking more opiates made it worse. Watch your adrenals on opiates and tramadol. If your adrenals are strong and you are handling it well, great, but if you get weaker and weaker then seek out help. B5, Vitamin C, and healthy fats are especially important for the adrenal cascade. Avoid sugars, eat fat/carb/protein each meal, split meals up to try and keep blood sugar more even. Chromium can help. Reduced adrenal function reduces body's ability to deal with blood sugar stabilization. Regular sleep and salt supplementation is important.
I have not had ANY abnormalities show up on bloodwork except for low vitamin D and over time higher prolactin. It can easily be missed. I ignored my cortisol saliva results for a while because they were borderline normal. It spiraled down quickly. Check your Blood pressure, if it's low and you are too tired and weak to stand often. Please work on researching this issue.
The results on opiates are mixed. There's virtually no record of tramadol and adrenals except for the once patient and the additional study below.
This is an endocrinologist paper on a case of Tramadol induced adrenal insufficiency. My symptoms were identical to patient in paper, high prolactin and low cortisol, as well as the abdominal cramping. http://hal.archives-ouvertes.fr/docs/00/66/08/93/PDF/PEER_stage2_10.1007%252Fs00228-011-0992-9.pdf
I was prescribed Hydrocortisone and adrenal support formula to raise my natural cortisol levels and immediately began slow reduction of tramadol. I will report back in a couple months to see if my levels began to stabilize at all. Tramadol withdrawal itself is stressful on the body. It should never be stopped cold turkey. Small reductions in the drug over time will minimize stress.
My cortisol was also low on ibuprofen. I obviously had adrenal issues to begin with, the medications made the issue more difficult for me. That is all I am trying to say about it. However, I've seen fellow spine tumor patients presenting the same symptoms, only better on steroids. They have a right to know that this is a possibility.
Friday, July 11, 2014
Acetyl carnitine for neuropathic pain
Hello all. I just wanted to post something quick. I've got a large tumor lodged (likely permanently) in my spine. Radiation caused pain beyond what I even thought was possible. I've been on track trying all sorts of pain remedies, specifically neuropathic ones. I've tried most vitamins and supplements as well as pharma drugs. Currently on tramadol 150 daily, a small amount of gabapentin if I can tolerate it. I cannot take morphine (lowers my blood pressure until i pass out) and have swelling issues with almost all neuro drugs gabapentin, lyrica, etc.
Not a cure all but Acetylcarnitine might be worth a purchase and try if you have neuropathic pain (burning, pins and needles, etc). I'm at around 1500 mg daily and I see a mild difference in pain. As much as I had with 25 mg of morphine type drugs or so. en.wikipedia.org/wiki/Acetylcarnitine
I know everyone's body chemistry is different, but if it helps even a little, it's probably worth it. Best wishes.
Oh, here is the pubmed study stating that acetyl make work for nueropathy: www.ncbi.nlm.nih.gov/pubmed/15616239
Have been on it a week or so, so I can't report side effects. None for me so far, don't figure it's too troublesome since it's an animo acid and antioxidant.
Not a cure all but Acetylcarnitine might be worth a purchase and try if you have neuropathic pain (burning, pins and needles, etc). I'm at around 1500 mg daily and I see a mild difference in pain. As much as I had with 25 mg of morphine type drugs or so. en.wikipedia.org/wiki/Acetylcarnitine
I know everyone's body chemistry is different, but if it helps even a little, it's probably worth it. Best wishes.
Oh, here is the pubmed study stating that acetyl make work for nueropathy: www.ncbi.nlm.nih.gov/pubmed/15616239
Have been on it a week or so, so I can't report side effects. None for me so far, don't figure it's too troublesome since it's an animo acid and antioxidant.
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