Does the Central Nervous System Heal

[kathleen2]

Tara, I'm so sorry you had to go through all this--it sounds horrific!

[julleri]

Originally Posted by Tara71

Hey there, sorry I didn't log on for a while. The recent GSK lawsuit settlement has me thinking about this issue again.

The worst thing happened to my body after going through all that Paxil Withdrawal. A strange infection from an ex-friend's hot tub destroyed the lining of my bladder and damaged the nerves around it. It's called "Interstitial Cystitis" and it brings in a whole new level of HELL (I thought I had already been there, but no!)

My bladder flares when I eat almost anything - I'm allergic to fruits, acids, preservatives, alcohols, vitamins, supplements, caffeine, nitrates, chocolate, onions, EVERYTHING! I even flare when I smoke a teeny bit of grass!

So now I'm actually CATHING myself and shoving numbing liquids into my bladder!! Not that it makes any difference if I ate MSG or nitrates. The Lyrica and Nortriptyline I take to control the nerve pains has made weight loss (the **** I gained on Paxil) next to impossible. And my brain... omg I have no short term memory.

What was I just talking about? lol.

I wish my only health problems were Paxil WD and anxiety. Those were the good old days!

There, does anybody feel better from THAT post? Hahah. I guess there's ALWAYS somebody out there who is worse off. I try to keep my sense of humor intact. I was severely abused as a kid, so it's sink or swim.

ANYWAY... on to the B vitamins. I had my levels tested. I'm at like 374 and doctors in the US only worry when people are under 200. I read somewhere people in Japan strive to be over 500 or they are considered low.

I tried taking B vitamins, but of course they flared my bladder. SO I talked my primary care doctor out of the shots. I do them on myself once a month and they really seem to be helping. Worth a try!!

Wow, what an old thread! I remember posting this. My mind was still a little bit under the influence of Prozac, given its long half-life. I also re-read the entire thread from my post to your response today, Tara. I can definitely say I am a much different person since some of my hopeless-filled responses between paxilgirl and me. I am nowhere near 100%, and I live in a state of mostly constant waves but there are windows. Last night was a good window. Very good. Not the best I've ever had (night of Monday, May 14 is still my record best-feeling window I've ever had and I'll never forget it, unless a better one than that comes along that is), but it was good and I'll take it.

Tara, I am so sorry to read you have IC! I just looked it up on Wikipedia. I remember a couple months ago I had an irritated feeling in my lower urethra at the tip of my penis and I thought "here we go, now I have a bladder infection or something." I went to an urgent care and they gave me a gram of azithromycin saying to take it, even though they could find nothing wrong. It did seem to help. The most it probably was was urethritis or something, but I remember ending up reading about IC and reading that it's very debilitating. It is proof there are things out there worse than withdrawal, even though withdrawal in my mind is right up there as one of the most hellish experiences one could possible have on earth. Adverse reactions are, too. So can be vitamin B12 deficiency, and that's the reason I wanted to reply to you.

I'm glad you got your level checked. 374 is low. I don't care what the lab tests out there say. The ranges are antiquated and were written before we had a clear understanding of the importance of the vitamin. You're right about Japan. 500 or lower is considered too low. I believe many in Europe also follow this pattern. Vitamin B12, along with vitamin D, is notorious for being difficult for people to absorb. There are many steps the molecule has to take in order to finally reach the brain and spinal cord, where it is needed the most. The liver stores about 5 years' worth of the vitamin, so deficiency can manifest itself subtly and slow, all the while causing damage. When I tested in February, I was at 204! Again, the "normal" range was 294 on the low end (or something ridiculous like that), but one really shouldn't go by those ranges anymore, but rather by how you feel and the symptoms you are having. I started with shots but found that I'd feel better than I had in years AFTER the shot but it would wear off in about one or two days, and I'd be back into a "withdrawal" state - yes! a "withdrawal" of vitamin B12! It sounds ridiculous but that's how it felt. I learned that the shots only last in the body for about 72 hours max. After a series of these shots, that which I gave myself every other day for a couple weeks, I switched to sublingual tablets at very high doses. You can significantly and even more effectively get your levels up using these than you can with shots. However, shots will provide you with the full 1mg of B12, whereas a 5000mcg of B12 from a sublingual may give you 1-10% at best of the vitamin, but that's still more than enough to help you heal if you're low. And taken everyday will help maintain the blood serum levels rather than having you high then plunge back down into weakness, fatigue, depression, etc again. I was retested about a month or two ago and my level is 1,844! 1,000 seems to be a good level to strive for. I've felt a lot of healing - not perfect, though. I too have no short term memory most days. I don't know if it's SSRI withdrawal or low B12, but it is a symptom of both. Neuropathic pain is also a symptom, again can be of both. Someone at my work told me that, after I told her I'm going through both SSRI withdrawal and vitamin recovery, these things will of course happen all at once. You don't get to have one misery at a time. So, Tara, I am so sorry you have to go through all these things. In some respect I'm lucky I'm only going through two things - vitamin deficiencies (my D is also low and I'm treating that, too, and noticing benefits and gains - again, B12 and D - both notoriously hard to absorb for many, many people - the other nutrients out there seem to posses less of a problem and can be gotten from food/diet better), and SSRI withdrawal. I couldn't imagine going through a serious infection, too. Of course, my health anxiety is terrible and there are many, many days (most days, now, actually) where I'm convinced I have a deadly neurological disease or muscular problem. I have to remind myself, however, that vitamin B12 plays a huge role in keeping healthy peripheral nerves that support muscle growth. Muscle wasting is a common enough low-B12 symptom. But, of course that's not good enough in my mind. Especially since I'm on treatment now and it's getting better. It takes time, too, by the way. Just like SSRI withdrawal recovery. It's a slow process. I think because it's related to nerves, which take a long time to heal. The first neurologist I saw, the *******, upon mentioning my low B12 issue and how I was not satisfied at how long it was taking to feel better, told me that it takes AT LEAST 6 months before you finally START to feel better, and it's more like a year before you feel the most improvements. Ha, it's only been three months that I've been on treatment for this. And only 4.5 months that I've been off SSRIs completely. It's been about 7 months post horrific SSRI adverse reaction, and it's been about 14 months that I've been off the original offender that brought me to this forum in the first place, Effexor. I need to put these timelines into perspective and not expect miracles just yet, but it's so, so hard when you've been down so low and suffered for so long.

Let me know how you're doing on the B12. If you have any B12 questions, please ask me! I am also a member of a wonderful support forum for any condition neuropsychiatric in nature. I won't put the link here since we aren't to share links on this forum. If you'd like it, you can PM me or we can correspond via email if you'd want. I've found a wealth of resources on vitamin B12 and other nerve-related B vitamins on that website. Again, gotta be careful what you read and they are not doctors. But this is a common enough phenomenon out there that again, like SSRI withdrawal you'd be better off getting advice from lay people who have experienced it, as doctors just don't understand this freaking vitamin. It's funny how years ago vitamin deficiencies were well-known to cause illnesses, but it's like in today's world, where big pharma money tends to control a doctor's treatment protocol, vitamins and overall health are not as serious or something. Ugh, that didn't make a lot of sense, did it? lol Point is, no one can market B12 and profit from it, but drug companies can keep releasing SSRIs and crap like them to doctors, who will prescribe that crap to you to just "treat" (and ultimately "mask") your symptoms rather than find the possible root cause of your problems, which may be a nutritional imbalance or a malabsorption problem of a certain vitamin that your body actually NEEDS (which is NOT the case with Paxil, Prozac, Wellbutrin, etc you get the picture). OK, enough of me being political right now. But damn it feels good to type this!

Jason

[Chrissy]

Originally Posted by julleri

Wow, what an old thread! I remember posting this. My mind was still a little bit under the influence of Prozac, given its long half-life. I also re-read the entire thread from my post to your response today, Tara. I can definitely say I am a much different person since some of my hopeless-filled responses between paxilgirl and me. I am nowhere near 100%, and I live in a state of mostly constant waves but there are windows. Last night was a good window. Very good. Not the best I've ever had (night of Monday, May 14 is still my record best-feeling window I've ever had and I'll never forget it, unless a better one than that comes along that is), but it was good and I'll take it.

Tara, I am so sorry to read you have IC! I just looked it up on Wikipedia. I remember a couple months ago I had an irritated feeling in my lower urethra at the tip of my penis and I thought "here we go, now I have a bladder infection or something." I went to an urgent care and they gave me a gram of azithromycin saying to take it, even though they could find nothing wrong. It did seem to help. The most it probably was was urethritis or something, but I remember ending up reading about IC and reading that it's very debilitating. It is proof there are things out there worse than withdrawal, even though withdrawal in my mind is right up there as one of the most hellish experiences one could possible have on earth. Adverse reactions are, too. So can be vitamin B12 deficiency, and that's the reason I wanted to reply to you.

I'm glad you got your level checked. 374 is low. I don't care what the lab tests out there say. The ranges are antiquated and were written before we had a clear understanding of the importance of the vitamin. You're right about Japan. 500 or lower is considered too low. I believe many in Europe also follow this pattern. Vitamin B12, along with vitamin D, is notorious for being difficult for people to absorb. There are many steps the molecule has to take in order to finally reach the brain and spinal cord, where it is needed the most. The liver stores about 5 years' worth of the vitamin, so deficiency can manifest itself subtly and slow, all the while causing damage. When I tested in February, I was at 204! Again, the "normal" range was 294 on the low end (or something ridiculous like that), but one really shouldn't go by those ranges anymore, but rather by how you feel and the symptoms you are having. I started with shots but found that I'd feel better than I had in years AFTER the shot but it would wear off in about one or two days, and I'd be back into a "withdrawal" state - yes! a "withdrawal" of vitamin B12! It sounds ridiculous but that's how it felt. I learned that the shots only last in the body for about 72 hours max. After a series of these shots, that which I gave myself every other day for a couple weeks, I switched to sublingual tablets at very high doses. You can significantly and even more effectively get your levels up using these than you can with shots. However, shots will provide you with the full 1mg of B12, whereas a 5000mcg of B12 from a sublingual may give you 1-10% at best of the vitamin, but that's still more than enough to help you heal if you're low. And taken everyday will help maintain the blood serum levels rather than having you high then plunge back down into weakness, fatigue, depression, etc again. I was retested about a month or two ago and my level is 1,844! 1,000 seems to be a good level to strive for. I've felt a lot of healing - not perfect, though. I too have no short term memory most days. I don't know if it's SSRI withdrawal or low B12, but it is a symptom of both. Neuropathic pain is also a symptom, again can be of both. Someone at my work told me that, after I told her I'm going through both SSRI withdrawal and vitamin recovery, these things will of course happen all at once. You don't get to have one misery at a time. So, Tara, I am so sorry you have to go through all these things. In some respect I'm lucky I'm only going through two things - vitamin deficiencies (my D is also low and I'm treating that, too, and noticing benefits and gains - again, B12 and D - both notoriously hard to absorb for many, many people - the other nutrients out there seem to posses less of a problem and can be gotten from food/diet better), and SSRI withdrawal. I couldn't imagine going through a serious infection, too. Of course, my health anxiety is terrible and there are many, many days (most days, now, actually) where I'm convinced I have a deadly neurological disease or muscular problem. I have to remind myself, however, that vitamin B12 plays a huge role in keeping healthy peripheral nerves that support muscle growth. Muscle wasting is a common enough low-B12 symptom. But, of course that's not good enough in my mind. Especially since I'm on treatment now and it's getting better. It takes time, too, by the way. Just like SSRI withdrawal recovery. It's a slow process. I think because it's related to nerves, which take a long time to heal. The first neurologist I saw, the *******, upon mentioning my low B12 issue and how I was not satisfied at how long it was taking to feel better, told me that it takes AT LEAST 6 months before you finally START to feel better, and it's more like a year before you feel the most improvements. Ha, it's only been three months that I've been on treatment for this. And only 4.5 months that I've been off SSRIs completely. It's been about 7 months post horrific SSRI adverse reaction, and it's been about 14 months that I've been off the original offender that brought me to this forum in the first place, Effexor. I need to put these timelines into perspective and not expect miracles just yet, but it's so, so hard when you've been down so low and suffered for so long.

Let me know how you're doing on the B12. If you have any B12 questions, please ask me! I am also a member of a wonderful support forum for any condition neuropsychiatric in nature. I won't put the link here since we aren't to share links on this forum. If you'd like it, you can PM me or we can correspond via email if you'd want. I've found a wealth of resources on vitamin B12 and other nerve-related B vitamins on that website. Again, gotta be careful what you read and they are not doctors. But this is a common enough phenomenon out there that again, like SSRI withdrawal you'd be better off getting advice from lay people who have experienced it, as doctors just don't understand this freaking vitamin. It's funny how years ago vitamin deficiencies were well-known to cause illnesses, but it's like in today's world, where big pharma money tends to control a doctor's treatment protocol, vitamins and overall health are not as serious or something. Ugh, that didn't make a lot of sense, did it? lol Point is, no one can market B12 and profit from it, but drug companies can keep releasing SSRIs and crap like them to doctors, who will prescribe that crap to you to just "treat" (and ultimately "mask") your symptoms rather than find the possible root cause of your problems, which may be a nutritional imbalance or a malabsorption problem of a certain vitamin that your body actually NEEDS (which is NOT the case with Paxil, Prozac, Wellbutrin, etc you get the picture). OK, enough of me being political right now. But damn it feels good to type this!

Jason

Hi Julleri

I have just received my first injection of vitamin B12, had levels tested twice over the past year and both came back under the 200 threshold here in the UK. Got to get them twice a week for starters, for 3 weeks, then once every three months.

I was wondering, since you seem to know a lot about this vitamin, could this deficiency be responsible for all my ongoing symptoms? No emotions (2 and a half years since quitting prozac c/t), taste, smell, hearing loss/sensory hearing loss, pssd, touch disturbances, residual numbness of the neck/head, ability to feel pain still impaired, memory problems, blocked feeling in ears, arms and hands going numb, muscle collapse, no appetite, no thirst?

Any information you may have would be interesting to know, thanks.

Chrissy

[julleri]

Originally Posted by Chrissy

Hi Julleri

I have just received my first injection of vitamin B12, had levels tested twice over the past year and both came back under the 200 threshold here in the UK. Got to get them twice a week for starters, for 3 weeks, then once every three months.

I was wondering, since you seem to know a lot about this vitamin, could this deficiency be responsible for all my ongoing symptoms? No emotions (2 and a half years since quitting prozac c/t), taste, smell, hearing loss/sensory hearing loss, pssd, touch disturbances, residual numbness of the neck/head, ability to feel pain still impaired, memory problems, blocked feeling in ears, arms and hands going numb, muscle collapse, no appetite, no thirst?

Any information you may have would be interesting to know, thanks.

Chrissy

Hi Chrissy,

First of all let me say I am not a doctor, and can't say for sure what's going on. Second of all, I can't say I am by any means an expert on vitamin B12. I can offer some thoughts, though.

Vitamin B12 deficiency usually presents itself differently in all kinds of people, but there are some themes. Lots of symptoms present themselves as neurological, psychiatric, and blood-related (megaloblastic anemia, for example). The things that stuck out to me from your list are no appetite (I could barely eat for a long time, but forced myself to because I knew I had to), no emotions, the touch disturbances (peripheral neuropathy and other strange sensations are common), the numbness (again, could be a neuropathic thing), the memory problems for sure, and the muscle collapse. I don't know about the taste/smell/hearing sensory losses. I've never read those symptoms. But, a deficiency in this vitamin can present itself in many mysterious ways. But, so can withdrawal. And don't cold turkey withdrawals tend to last longer? Maybe you're suffering from a bit from column A and column B here. Regardless, do get the B12. Did you notice anything feel better after you got the shot? If you felt any relief, that could point to at least some of the symptoms being a part of the B12 camp. If not, it's probably still Prozac withdrawal. But again, I don't want to overspeculate and I can't say for certain what's going on with you.

Let me know how you felt after the shot and then maybe you can go from there? Also, can you obtain any sublingual tablets? They're everywhere here in the states; I would assume the UK would be no different. You could try to see if you like them or if you notice any changes. 1,000 - 2,000 mcg or if you want a boost 5,000 mcg. You may just want to start small and work your way up, as with any new substance. But it does sound like to me you really need the supplementation with this vitamin. Let me know how it goes.

Regards,
Jason

[Chrissy]

Originally Posted by julleri

Hi Chrissy,

First of all let me say I am not a doctor, and can't say for sure what's going on. Second of all, I can't say I am by any means an expert on vitamin B12. I can offer some thoughts, though.

Vitamin B12 deficiency usually presents itself differently in all kinds of people, but there are some themes. Lots of symptoms present themselves as neurological, psychiatric, and blood-related (megaloblastic anemia, for example). The things that stuck out to me from your list are no appetite (I could barely eat for a long time, but forced myself to because I knew I had to), no emotions, the touch disturbances (peripheral neuropathy and other strange sensations are common), the numbness (again, could be a neuropathic thing), the memory problems for sure, and the muscle collapse. I don't know about the taste/smell/hearing sensory losses. I've never read those symptoms. But, a deficiency in this vitamin can present itself in many mysterious ways. But, so can withdrawal. And don't cold turkey withdrawals tend to last longer? Maybe you're suffering from a bit from column A and column B here. Regardless, do get the B12. Did you notice anything feel better after you got the shot? If you felt any relief, that could point to at least some of the symptoms being a part of the B12 camp. If not, it's probably still Prozac withdrawal. But again, I don't want to overspeculate and I can't say for certain what's going on with you.

Let me know how you felt after the shot and then maybe you can go from there? Also, can you obtain any sublingual tablets? They're everywhere here in the states; I would assume the UK would be no different. You could try to see if you like them or if you notice any changes. 1,000 - 2,000 mcg or if you want a boost 5,000 mcg. You may just want to start small and work your way up, as with any new substance. But it does sound like to me you really need the supplementation with this vitamin. Let me know how it goes.

Regards,
Jason

Thanks Jason for replying, I agree that both the c/t from prozac and the subsequent deficiency (albeit a temporary one I've been told - have a normal intrinsic factor result), are probably at play here. I have now had two injections so far, but have not noticed any changes/improvements as of yet. I think once I have received all 5 of the initial treatments I may look into additionally supplementing myself with the tablet form, thanks for the info there..

Once again thanks for your response, If my doctor had his way, he would have me believing that this vitamin was utterly useless, that any improvement in my symptoms are a psychological result and with no connection to the administering of the vitamin!

Chrissy

[julleri]

Originally Posted by Chrissy

Thanks Jason for replying, I agree that both the c/t from prozac and the subsequent deficiency (albeit a temporary one I've been told - have a normal intrinsic factor result), are probably at play here. I have now had two injections so far, but have not noticed any changes/improvements as of yet. I think once I have received all 5 of the initial treatments I may look into additionally supplementing myself with the tablet form, thanks for the info there..

Once again thanks for your response, If my doctor had his way, he would have me believing that this vitamin was utterly useless, that any improvement in my symptoms are a psychological result and with no connection to the administering of the vitamin!

Chrissy

Hi Chrissy,

You're welcome! I'm so sorry you haven't noticed any improvements from the shots yet. For me, I noticed a difference almost immediately, but I think I was low for a long time (this is just my speculation, on looking back over the years and how I have changed). Maybe your problems aren't a result of the vitamin deficiency. (Still follow through with your doctor's treatments, as that is a low value, and it wouldn't hurt to bring it back up... it may even help.) Interesting they found you have Intrinsic Factor. I myself do not know if I lack IF. I'm sure I do. For years I took Prilosec OTC (a proton pump inhibitor for acid reflux), which can destroy the parietal cells, those cells that produce IF, necessary in capturing the cobalamin molecule for absorption. In any event, you're lucky, because if you eat meat, you should be able to acquire B12 via nature's mechanism (unless you have had part of the ileum removed or something... or maybe another mechanism is not working that you're just not getting it... I really can't say). I will have to supplement for life. Not a terrible thing, as, at least as far as I know, there is no harmful upper limit on this particular B vitamin (thank goodness). Although I have broken out in some weird acne from this (and I know it is from this).

Not really sure what to say regarding your symptoms. Again, some of them seem like they could be from this, but I really don't know. 2 years post CT from SSRIs though... it's so hard to say. Did the doctor look at anything else? Hormones maybe? I really don't know.

I struggle just about everyday with terrible, nasty vile symptoms. And I try to think what it's from - the meds or this vitamin situation or what. But it's not worth it to dwell. Oh, or it could be underlying anxiety and depression, too. Can't forget about that. I hope you find some answers and that things start getting better for you very very soon!