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Old 09-27-2009, 12:16 AM #1
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Default Hi all - new to PN

Hi Everyone

My name is Dan and I am quite new to PN. The pins & needles started in early July of this year and only happened if I took a hot shower. The feeling started to progress over the summer and was quite worse on hotter days. What started in my feet and hands moved up my arms and up legs and spread across my whole body. It is quite scary how fast the PN has spread and increased in pain. I am scheduled to see a Neurologist in the next month but nothing happens fast when it comes to the Canadian medicare system.

I have two suspects as to where my pain came from. First off, I just recently finshed a long 2-1/2 year taper of Paxil on August 24 after over 15 years on the medication. The withdrawal was horrible but I finally was able to make it. Throughout the whole taper, I faced many weird CNS issues such as muscle twitching/tics, sleep starts (jolting right before falling asleep), dizziness, the horrible SSRI withdrawal "zaps", etc... Could Paxil have damaged my CNS after 15 years on the drug and that is what is causing my PN?

The second suspect is that I have been on 5 different PPI medications over the past 4 years for stomach pain. I had numerous scopes and was diagnosed with a hiatus hernia with mild barrett's esophogus. The Gastro wanted me to stay on PPIs the remainder of my life. During the whole time on these drugs, my stomach has gotten worse. I finally had a integrative doctor (MD but natural focus) in August that I went to see about the symptoms from Paxil withdrawal and he stated that the PPI was probably the culprit causing the PN. If you google side effects from many of these PPI drugs, a lot of people are complaining about pins & needles. I have stopped taking the PPI as of 13 days ago and my symptoms continue to increase.

My new family doctor has prescribed me gabapentin (Neurontin) by I am so scared to try it due to the side effects. However, the pain continues to spread and increase in intensaty and I don't know where else to turn. I am glad I found a forum with people that are facing the same thing I am.
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Old 09-27-2009, 01:04 AM #2
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Welcome to the PN forum!

I'd start with a B12 test and test for Vit D.

PPIs prevent the absorption of several nutrients.
B12, folic acid, calcium, magnesium, zinc and iron.

Certainly a low B12 level leads to nerve damage. Your levels for it
should be 500 or above. Anything lower should be treated.
The US still has antiquated "normals" so make sure you get your numbers if the doctor says "normal". There is a B12 thread at the top of this page.

I would also try a tryptophan supplement combined with some B6. SSRI drugs result in lowered serotonin synthesis and many of the withdrawal symptoms reflect this low level, until the body starts making it like it should.

Vitamin D has recently been showing in new studies, to be very low in most Americans.
There are two videos on this thread:
http://neurotalk.psychcentral.com/thread92116.html

Depending on your age etc, there can be other causes.
But these appear to me to be the ones to look at to start.
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Old 09-27-2009, 07:45 AM #3
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Originally Posted by since95 View Post
Hi Everyone

My name is Dan and I am quite new to PN. The pins & needles started in early July of this year and only happened if I took a hot shower. The feeling started to progress over the summer and was quite worse on hotter days. What started in my feet and hands moved up my arms and up legs and spread across my whole body. It is quite scary how fast the PN has spread and increased in pain. I am scheduled to see a Neurologist in the next month but nothing happens fast when it comes to the Canadian medicare system.

I have two suspects as to where my pain came from. First off, I just recently finshed a long 2-1/2 year taper of Paxil on August 24 after over 15 years on the medication. The withdrawal was horrible but I finally was able to make it. Throughout the whole taper, I faced many weird CNS issues such as muscle twitching/tics, sleep starts (jolting right before falling asleep), dizziness, the horrible SSRI withdrawal "zaps", etc... Could Paxil have damaged my CNS after 15 years on the drug and that is what is causing my PN?

The second suspect is that I have been on 5 different PPI medications over the past 4 years for stomach pain. I had numerous scopes and was diagnosed with a hiatus hernia with mild barrett's esophogus. The Gastro wanted me to stay on PPIs the remainder of my life. During the whole time on these drugs, my stomach has gotten worse. I finally had a integrative doctor (MD but natural focus) in August that I went to see about the symptoms from Paxil withdrawal and he stated that the PPI was probably the culprit causing the PN. If you google side effects from many of these PPI drugs, a lot of people are complaining about pins & needles. I have stopped taking the PPI as of 13 days ago and my symptoms continue to increase.

My new family doctor has prescribed me gabapentin (Neurontin) by I am so scared to try it due to the side effects. However, the pain continues to spread and increase in intensaty and I don't know where else to turn. I am glad I found a forum with people that are facing the same thing I am.
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum
http://www.ncbi.nlm.nih.gov/pubmed/1...ResultsPanel.P

if these links dont come up properly....just go to pub med and put in "barretts esophagus celiac....
with depression, stomache issues, and now barretts, you are probably in need of a work up for celiac disease.....go to the gluten sens. forum here and read the gluten file....and did the doc mention that barretts can be precancerous?
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Old 09-27-2009, 07:48 AM #4
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if these links dont come up properly....just go to pub med and put in "barretts esophagus celiac....
with depression, stomache issues, and now barretts, you are probably in need of a work up for celiac disease.....go to the gluten sens. forum here and read the gluten file....and did the doc mention that barretts can be precancerous?
I agree. Have any of these doctors even mentioned celiac or gluten intolerance. My neuropathy was caused by gluten. You do not have to have celiac disease to have damaged caused by gluten. So many of your symptoms can be traced to gluten. Check it out.
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Old 09-27-2009, 09:35 AM #5
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Thanks everyone for the quick response. A little more history about me:

The doctor I was able to see in August was 600 miles away from my home but he specializes in SSRI/benzo withdrawal, plus is one of the world's most renowned doctors specializing in natural methods to help with MS. He doesn't usually see people one on one anymore but a friend of mine was able to "pull a few strings." Unfortunately, he doesn't have the time to be my regular family doctor (nor does it make sense do to the distance between us).

The first thing he tested was my vitamin B and D levels, with the results showing higher than normal (Vitamin B 12 was 545). Due to the supplement program I take to help with the SSRI withdrawal (Point of Return program), I already take 4000 IU a day of vitamin D. He also suggested starting a Gluten free diet which I implemented August 24.

I have found a new family doctor in my city who has scheduled me in to see a Neurologist plus a MRI scan and celiac testing. The "process" was taking a little too long so I went to the ER last week and had the ER doctor help speed things up. For those of you living in Canada, many of you know how slow our system can be. Both my new doctor and the ER doctor prescribed me Neurontin but I am so scared to try anything new, especially since I haven't had much luck in the last little bit with prescription drugs.

I have just recently started IV treatment using a Myers cocktail followed up with Glutathione. I plan to add a B-Complex supplement to the multi-vitamin/multi-mineral I take right now. I have tried R-Lipioc a few weeks ago but it seemed to upset my stomach. I plan to try and restart it this week.


Hi Pabb, I well aware that Barrett's can lead to cancer. However, I used to live a lifestyle in which I would drink 3-4 beer a night plus add greasy restaurant food right before bed (travelling sales rep). I changed this way of life 4 years ago (sober for 3 years) and heartburn was never an issue. The pains that I have experienced has been from something else and I think I finally pin pointed it this past few weeks since coming off the PPIs. All of the sudden the gut wrenching, knife like pains I was feeling are starting to really let up. Gastrologists only have so many weapons to use and they seem to always push PPIs for a majority of the stomach ailments that they see (just my opinion).

So I have all the required tests scheduled but it probably is still going to be a good 3-4 weeks before I can get in to see anyone. As my symptoms continue to increase and the pain worsens, I think I am stuck with having to try the Neurontin. I also plan to implement some of the suggestions in the stickies and see how they work.
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Old 09-27-2009, 12:16 PM #6
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Quote:
Originally Posted by since95 View Post
Thanks everyone for the quick response. A little more history about me:

The doctor I was able to see in August was 600 miles away from my home but he specializes in SSRI/benzo withdrawal, plus is one of the world's most renowned doctors specializing in natural methods to help with MS. He doesn't usually see people one on one anymore but a friend of mine was able to "pull a few strings." Unfortunately, he doesn't have the time to be my regular family doctor (nor does it make sense do to the distance between us).

The first thing he tested was my vitamin B and D levels, with the results showing higher than normal (Vitamin B 12 was 545). Due to the supplement program I take to help with the SSRI withdrawal (Point of Return program), I already take 4000 IU a day of vitamin D. He also suggested starting a Gluten free diet which I implemented August 24.
I have found a new family doctor in my city who has scheduled me in to see a Neurologist plus a MRI scan and celiac testing. The "process" was taking a little too long so I went to the ER last week and had the ER doctor help speed things up. For those of you living in Canada, many of you know how slow our system can be. Both my new doctor and the ER doctor prescribed me Neurontin but I am so scared to try anything new, especially since I haven't had much luck in the last little bit with prescription drugs.

I have just recently started IV treatment using a Myers cocktail followed up with Glutathione. I plan to add a B-Complex supplement to the multi-vitamin/multi-mineral I take right now. I have tried R-Lipioc a few weeks ago but it seemed to upset my stomach. I plan to try and restart it this week.


Hi Pabb, I well aware that Barrett's can lead to cancer. However, I used to live a lifestyle in which I would drink 3-4 beer a night plus add greasy restaurant food right before bed (travelling sales rep). I changed this way of life 4 years ago (sober for 3 years) and heartburn was never an issue. The pains that I have experienced has been from something else and I think I finally pin pointed it this past few weeks since coming off the PPIs. All of the sudden the gut wrenching, knife like pains I was feeling are starting to really let up. Gastrologists only have so many weapons to use and they seem to always push PPIs for a majority of the stomach ailments that they see (just my opinion).

So I have all the required tests scheduled but it probably is still going to be a good 3-4 weeks before I can get in to see anyone. As my symptoms continue to increase and the pain worsens, I think I am stuck with having to try the Neurontin. I also plan to implement some of the suggestions in the stickies and see how they work.
this doc is a hmmmm angel, saint, something!!!! couple of points, if you are taking the B12 daily.....and were right up to the test...it was falsely high, so you might want to up that dose a little....and the celiac blood tests done too long after the beginning of the gluten free diet are going to be negative even if you are a celiac.......you could try enterolab by mail.....what was your Vit D level? if you are a big guy and it was only a little over the mid point, you might want to up that a little too......i am soooo happy for you that you managed to see this doc!
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Old 09-27-2009, 03:39 PM #7
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Lightbulb

There are studies showing acid reducing drugs, lower the absorption of B12 and the other nutrients I listed.

When that happens, neuropathy may occur.

The most studied PPI is PriloSec...since it has been on the market the longest.

Quote:
Am J Gastroenterol. 2009 Mar;104(2 Suppl):S27-32.Click here to read Links

Erratum in:
Am J Gastroenterol. 2009 Apr;104(4):1072.
Am J Gastroenterol. 2009 Mar;104(2 Suppl):S39.

Overutilization of proton pump inhibitors: a review of cost-effectiveness and risk [corrected]
Heidelbaugh JJ, Goldberg KL, Inadomi JM.

Department of Family Medicine, University of Michigan, Ann Arbor, Michigan, USA. jheidel@umich.edu

Proton pump inhibitors (PPIs) are superior to histamine-2 receptor antagonists for the treatment of gastroesophageal reflux disease (GERD) and erosive esophagitis. Antisecretory therapy (AST), however, accounts for significant cost expenditure in the United States including over-the-counter and prescription formulations. Moreover, emerging data illustrate the potential risks associated with long-term PPI therapy including variations in bioavailability of common medications, vitamin B12 deficiency, Clostridium difficile-associated diarrhea, community-acquired pneumonia, and hip fracture. For these reasons, it is imperative to use the lowest dose of drug necessary to achieve desired therapeutic goals. This may entail the use of step-down, step-off, or on-demand PPI therapy for the treatment of GERD. In addition, PPIs are the most commonly used medications for stress ulcer prophylaxis (SUP), despite little evidence to support their use. Compounding this problem is evidence that patients erroneously administered SUP are often discharged on long-term PPI therapy. Pharmacy-driven step-down orders, limitation of the use of PPIs for SUP in non-ICU settings, and meticulous chart review to ensure that hospitalized patients are not discharged home on a PPI without an appropriate indication are interventions that can ensure proper PPI utilization with minimal of risk and optimization of cost-effectiveness.

PMID: 19262544 [PubMed - indexed for MEDLINE]
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judymoody (09-27-2009)
Old 09-27-2009, 10:08 AM #8
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Also, just so everyone knows, I am 30 years old.
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Old 09-27-2009, 11:28 AM #9
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Lightbulb

Have you been tested for heavy metals?

Have you been tested for hereditary neuropathies, like Charcot Marie Tooth?

Autoimmune factors? (these may elevate following vaccines, or infections).

Glutathione has been used for a drug induced neuropathy, from the antibiotics called fluoroquinolones. Information about this can be found on
http://www.medicationsense.com/fluoroquinolone.html
and
http://www.medicationsense.com/artic...ity070508.html
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Old 09-27-2009, 11:42 AM #10
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Default PPIs and neuorpathy

I have heard connections made between neuoropathy and proton pump inhibitors before. I take the PPI Achipex for GERD. I have small-fiber neuropathy, but my neuor believes its due to impaired glucose tolerance. Anyway, is there any hard data that supports a link between PPIs and neuropathy?






Quote:
Originally Posted by since95 View Post
Hi Everyone

My name is Dan and I am quite new to PN. The pins & needles started in early July of this year and only happened if I took a hot shower. The feeling started to progress over the summer and was quite worse on hotter days. What started in my feet and hands moved up my arms and up legs and spread across my whole body. It is quite scary how fast the PN has spread and increased in pain. I am scheduled to see a Neurologist in the next month but nothing happens fast when it comes to the Canadian medicare system.

I have two suspects as to where my pain came from. First off, I just recently finshed a long 2-1/2 year taper of Paxil on August 24 after over 15 years on the medication. The withdrawal was horrible but I finally was able to make it. Throughout the whole taper, I faced many weird CNS issues such as muscle twitching/tics, sleep starts (jolting right before falling asleep), dizziness, the horrible SSRI withdrawal "zaps", etc... Could Paxil have damaged my CNS after 15 years on the drug and that is what is causing my PN?

The second suspect is that I have been on 5 different PPI medications over the past 4 years for stomach pain. I had numerous scopes and was diagnosed with a hiatus hernia with mild barrett's esophogus. The Gastro wanted me to stay on PPIs the remainder of my life. During the whole time on these drugs, my stomach has gotten worse. I finally had a integrative doctor (MD but natural focus) in August that I went to see about the symptoms from Paxil withdrawal and he stated that the PPI was probably the culprit causing the PN. If you google side effects from many of these PPI drugs, a lot of people are complaining about pins & needles. I have stopped taking the PPI as of 13 days ago and my symptoms continue to increase.

My new family doctor has prescribed me gabapentin (Neurontin) by I am so scared to try it due to the side effects. However, the pain continues to spread and increase in intensaty and I don't know where else to turn. I am glad I found a forum with people that are facing the same thing I am.
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