☼ Maybe

[Punarbhava]

Hey Punar,

 

it seems that I do not have a lactose intolerance, because I can drink mare's milk without a reaction (the only milk product with not reaction) and it has lactose as well. So that does not seem to be the problem. Kinda weird though..

 

 

Interesting. Well then, I think you can pretty much consider your digestive issues to be WD related. Time will surely clairfy. IF your current problems resolve or significantly improve months from now, then you will know for certain that it was all WD created sensitivities (which is common).

 

In the meantime, as you know, its best to avoid that which causes distress.

 

 

I can tell you .......my digestive issues have HUGELY IMPROVED. I've come a very long way......from violent sickness and many sensitities to presently being able to tolerate most things, most of the time.

 

 

I am beyond grateful! I'm sure you will experience the same significant relief in the near future.

 

 

 

Punar

[ajay]

Maybe, if you have to look up too many words from your test results, please tell me they went over the report with you so you know what to avoid! Did you get recommendations for changes to make in your diet?

 

Some people have allergies to milk proteins (casein, for example). Avoiding milk entirely is a challenge - there's whey protein in so many prepared foods - but it's probably worth the effort if it helps you feel better.

My first anxiety attack in w/d happened 20 minutes after I ate something with MSG in it.

 

As for the cereals, did they recommend you avoid gluten?

 

It can be frustrating to limit your diet. Sometimes it means you have to avoid pretty much everything that comes in a cellophane wrapper! It might also take a few weeks before you notice a difference. But if you do notice a difference, it'll be easier to stick with it.

[Maybe]

The report is very easy to understand. The problem is, that I do not know all the food names in English

 

There are 3 or 4 cereals which I react to, but only medium, not strongly. So eating it now and then should be no huge problem. I will avoid all foods with a strong reaction (mostly the milk products) and eat the others only sometimes, for example as a side dish. Rye eg is no problem, so I am going to eat mostly bread with rye and so on.

 

Btw, in 2010, when I was in hospital and felt so much better, I nearly ate everything without any major problems. So most reactions are definitely wd related.

[Punarbhava]

The report is very easy to understand. The problem is, that I do not know all the food names in English

 

There are 3 or 4 cereals which I react to, but only medium, not strongly. So eating it now and then should be no huge problem. I will avoid all foods with a strong reaction (mostly the milk products) and eat the others only sometimes, for example as a side dish. Rye eg is no problem, so I am going to eat mostly bread with rye and so on.

 

Btw, in 2010, when I was in hospital and felt so much better, I nearly ate everything without any major problems. So most reactions are definitely wd related.

 

 

I do okay with Rye bread as well however, have to limit my consumption. Do not eat it on a daily basis.

 

 

Ajay brings forward a few valid points re: gluten and MSG. SO many people react badly to these during WD.

 

 

I stay away from most processed/packaged foods. I've eliminated refined carbohydrates. I eat mostly fruit, veggies, lean meat, fish, homemade soup, nuts, seeds, beans, lentils etc. and grains but only in cooked cereal.

 

 

Sugar is also a bad trigger for many in WD and thus, I avoid it or use sparingly.

 

 

Punar

[Punarbhava]

Short question:

Do you think it was a mistake to stop the pills abruptly even when I had an adverse reaction to it? Should I have taken them a bit longer, slowly reducing the 10mg?

 

I very much agree with Summer.

 

 

In fact, it would have been a mistake to stay on the drug and could have been dangerous to do so.

 

 

You did the right thing Maybe especially because you were on the drug for such a very short time. There would have been NO benefit staying on the drug for even one day longer. Look at the damage that occurred from being on such a short time. The damage could have been more extensive if you stayed on it longer.

 

 

Punar

[Maybe]

Yes, I guess you are right. Even was big mistake to take the 4th pill after I had this bad reaction in the morning. I am calmed too quickly when problems abate...

 

Ah well, this will be fun. I am male and I am not too much into cooking and buying food <g>. I just hope that I can keep my weight when I change my diet. Not so easy I guess.

[Punarbhava]

So you think the system will always be sensitised from now on?

 

 

 

In regard to drug sensitivity. Most people who have drug sensitivities during WD recover and are able to tolerate standard doses of medications in the future.

 

 

For example, during my C/T xanax WD I could not take simple aspirin. It would shoot my CNS into higher anxiety states. However, at the 2 year mark I was able to ingest aspirin again with no negative consequences.

 

 

With that said, you should never again expose yourself to any type of psychotropic drug.

 

 

I've made a personal decision to also avoid, in the future, fluoroquinolone and quninolone antibiotics since, they can cause CNS damage. There are people in support groups trying to recover from these drugs.

 

I would also avoid most gastrointestinal drugs as well. Many anti-emetics (anti-nausea drugs) have neuroleptic (antipsychotic) properties, not to mention many others do affect serotonin, histamine and dompamine. As well, I refuse to take any addictive pain medications.

 

There are other medications as well that can cause psychiatric side-effects eg. beta blockers (blood pressure medication) can cause insomnia, depression etc.

 

 

It would be best to thoroughly research any medication before consenting to treatment.

 

Long story short, it's best to avoid all drugs as much as possible.

 

 

Punar

[Maybe]

I never took many meds prior to wd and I do not plan to change that. There are many natural things that help the body to recover and heal without chemistry.

 

Btw, with the "I am male" I did not want to sound archaic. Just read it again and it might sound this way. Just wanted to underline that I never cared so much about my nutrition which is quite common for men I think

I always tried to eat healthy, but never wasted too much time on going into the details, like making special meals etc. Seems I have to do that now, but with the hope of feeling much better in the comming weeks and months!

[Punarbhava]

I never took many meds prior to wd and I do not plan to change that. There are many natural things that help the body to recover and heal without chemistry.

 

 

Good for you Maybe!

 

 

Btw, with the "I am male" I did not want to sound archaic. Just read it again and it might sound this way. Just wanted to underline that I never cared so much about my nutrition which is quite common for men I think

I always tried to eat healthy, but never wasted too much time on going into the details, like making special meals etc. Seems I have to do that now, but with the hope of feeling much better in the comming weeks and months!

 

 

Not to worry. I wasn't offended at all by your previous post. I understood it in the fashion that you have described.

 

BTW, I'm female and I don't enjoy cooking either (LOL). I only do so because it's to my benefit. I'd prefer to hire a personal chef to prepare my healthy meals.

 

Actually, I just wish I didn't have to eat at all. Life would be simpler, not to mention, less costly.

[Maybe]

Hehe, ok. Didn't want to accidently insult anyone.

 

Ah, well. A personal chef would be fantastic. I love a good meal, but am not too fond of preparing it either

[Punarbhava]

Hehe, ok. Didn't want to accidently insult anyone.

 

Ah, well. A personal chef would be fantastic. I love a good meal, but am not too fond of preparing it either

 

 

Need to win a lottery ............the first thing on the list is to "HIRE a personal chef" (LOL).

 

 

That would be an absolute dream. (LOL) It would free up SO MUCH TIME ......time to spend engaged in other more interesting acitivities.

 

 

 

Punar

[Punarbhava]

Hey Maybe..........

 

 

I know you're a few months behind me but I can't remember how many months.

 

 

Just wanted to let you know that I'm experiencing significant improvements this past month (25 month mark). It's shocking how ONE month can make such a big difference.

 

 

I've held off sharing this since, I didn't know if it would last but I'm going on 3 weeks straight and SO MUCH MORE FUNCTIONAL!!! While I do have to pace myself, I'm able to accomplish things that I could not do during my horrendous taper and for 2 years post taper.

 

 

Hope you're doing a bit better and if not, then do hang on. You're so close to experiencing better days.

 

 

Punar

[Maybe]

Hey Punar,

 

Thanks for sharing your improvements

 

The first days of my holiday were fine, but then a "wave" hit, lasting till today, my first day back at work. It is not horrible (only one evening was really really bad), but still I hate the symptoms. Had a long car trip today (6 hours) and am currently not feeling too well because of that.

 

I am close to the 23rd month mark. So around 2 months behind you. I hope the 24th mark will see me turning the corner

[Punarbhava]

Hey Punar,

 

Thanks for sharing your improvements

 

Thought I would share so you can keep the faith. I know how discouraging the months leading up to the two year mark were for me but I kept telling myself to hold on......ride it out.

 

The first days of my holiday were fine, but then a "wave" hit, lasting till today, my first day back at work. It is not horrible (only one evening was really really bad), but still I hate the symptoms. Had a long car trip today (6 hours) and am currently not feeling too well because of that.

 

Glad to hear you had a few good days but sorry to hear about the wave. I know how deflating it is to get hit hard again. The long car trip no doubt was too much for your CNS to endure. Hope things settle down soon for you.

 

I am close to the 23rd month mark. So around 2 months behind you. I hope the 24th mark will see me turning the corner

 

Thanks for clarifying. Yesterday I reached the 26th month mark. So, I'm 3 months ahead of you.

 

I hope you turn the corner soon.

 

 

Continued Healing to You!

 

Healing Soul

[Nadia]

Just wanted to let you know that I'm experiencing significant improvements this past month (25 month mark). It's shocking how ONE month can make such a big difference.

 

Wonderful to hear! And hope it's in store for you as well, Maybe.

[Altostrata]

Fascinating -- so many people seem to develop gut sensitivities in withdrawal.

 

Maybe, did you see this topic? SCD/GAPS/Paleo Diets

 

I agree with Pun - if I win the lottery, I'm hiring a personal chef.

[Maybe]

Hey Alto,

 

Yes, I briefly had a look, but it currently sounds too complicated somehow. I still have some outstanding test results coming in on the 8th of August and a phone call with a dietry consultant this evening.

[Maybe]

Eating certain things that my system reacts do creates stress, which of course burdens my nervous system. I strongly react to nearly all milk products, eggs, barm and gluten. I seems that I have to change my complete dietry to get out of this whole mess. Unbelievable. Some of the B-Vitamins are being produced in the digestive system and stress uses them up. So it is possible that I have a deficiency there which may cause some of the symptoms. Another thing I need to have tested.

 

I am not even "allowed" to eat bread anymore, which is my normal breakfast and dinner. I am so fed up with this whole crap, I cannot put it in words...

[Altostrata]

It definitely sounds like the SCD/GAPS/Paleo Diets are for you. A couple of the participants in that topic also cannot eat gluten.

 

Ask questions in the topic if it seems complicated. I know Patience is very knowledgeable about it.

[Punarbhava]

 

Just wanted to let you know that I'm experiencing significant improvements this past month (25 month mark). It's shocking how ONE month can make such a big difference.

 

Wonderful to hear! And hope it's in store for you as well, Maybe.

 

Thank you Nadia!

 

 

Punar

[Punarbhava]

Eating certain things that my system reacts do creates stress, which of course burdens my nervous system. I strongly react to nearly all milk products, eggs, barm and gluten. I seems that I have to change my complete dietry to get out of this whole mess. Unbelievable. Some of the B-Vitamins are being produced in the digestive system and stress uses them up. So it is possible that I have a deficiency there which may cause some of the symptoms. Another thing I need to have tested.

 

I am not even "allowed" to eat bread anymore, which is my normal breakfast and dinner. I am so fed up with this whole crap, I cannot put it in words...

 

Maybe, I know how extremely frustrating this all is but it's temporary. That's what I kept telling myself to counteract the stress of it all.

 

 

I stopped eating bread and dairy products and eggs didn't agree with me for some time but I can eat eggs again (although I don't do so very often under normal circumstances anyway).

 

You can obtain your B-vitamins from other food sources. Google this subject to find out.

 

I tell you, I'm not nearly as sensitive to bread at 25 and 26 months off as I was at up until that time. I can now have one slice but I've gotten used to not eating bread and thus, I don't even desire to have it anymore TBH.

 

This will all eventually turn around for you .......likely in a few months. In the meantime, you can adopt life long healthier eating habits. Too many carbs are not good for the health anyway.

 

I know it's a huge adjustment to have to significantly modify one's diet but honestly, it took me about a week to adapt.

 

You may wish to give Alto's suggestion a try. It may significantly help your situation at this time.

 

 

Punar

[Maybe]

The problem is, i do not always know if something is causing my symptoms to flair up or not. The test I have done examined my around 200 types of food and if my immune system reacts to them. This may or may not have anything to do with wd. I can eat some certain things that my immune system does not react to, but I get symptoms and vice versa. I have no way to tell because it is impossible to find out most of the time. I would die of starvation before I knew what I can eat and what not, because the reactions can follow up to 72 hours later.

 

I will try to follow the consultants suggestions as good as I can, but I have to keep my weight which is already quite low.

 

Today is the 23rd month mark. Nothing really has changed, but I more and more get the feeling that I may have PTSD. The symptoms vary so fast and strongly, I do not know if this is really 100% anymore. Besides the main symptoms I described there are many more that mostly have to do with the perception of my body. For example, I have weird pains around my larynx that come and go as they please and even wander around. They cannot be attributed to any "normal" illness.

 

I wanted to go to the doc this morning to check it out, but they are gone. Surely will pop up later or tomorrow again. Totally nuts.

 

The only real improvement I can see is that I can use TFT monitors much better again. i do not even know if I can use them 100% because I am still afraid to test it, but I can look at them at work without any trouble. At least something that seems to go into the right direction...

[Altostrata]

Well, it sounds like light sensitivity is getting better.

 

Yes, the way this thing progresses is very frustrating. Because it's not predictable, you don't know if you'll be able to do this or that.

[Soso]

What causes food sensitivity ? Is it the candida ? I start using something called manuka honey(it's good for IBS,candida, stomach ulcer and food indigestion) it seems helping

[Maybe]

I do not really know what is the cause. I guess there are several factors in play like dietry habits and environment factors.

 

What do you all do about sweets? I wonder if I might eat a Jelly Belly or not...I somehow want to eat some sweets right now. But I am afraid that even some small sweets may not be too good.

[Maybe]

Woke up in the middle of the nigth, feeling weird in the back of my head, my spine and my calfs. It was aweful. I stood up, walked around a bit and it got better so I could sleep again. What the hell is that???

 

As expected I feel not too well today, a bit dizzy and my cns feels worn and whenever I eat something, even an apple or a banana, my digestive system makes some loud noises.

 

I cannot even say:"Hey, this particular symptom again, no problem, I know you!", because some symptoms I can't describe or they come and go as they please. How I am supposed to know how I should behave when I have no clue what is good or bad?

 

Though one minor symptom is quite new...the finger tips of my left hand sometimes feel a bit numb and hurt.

[Nadia]

I am having an awful time with craving sweets and cakes and things like that. For months I had no appetite, and now, suddenly, I want to stuff myself with sweets. But my appetite came back probably because I started the Selective Carb Diet and am eating no sugar and no grains. The PLUS side is that the diet allows honey as long as it's 100% pure honey. And also fruit (though you shouldn't overdo it). So yesterday I ate bananas and cherries fried in ghi (clarified butter) with a few drops of lemon. I didn't even have to add honey, and it was really delicious... kind of like a pie without the crust (eventually I'll be able to eat a crust made from almonds or pecans). I think it hits the same spot as a jelly belly, but is even better. I don't know what kinds of fruit you have available to you, but maybe it could help your cravings to have something like that?

[Maybe]

Hi Nadia,

 

Thank you for your reply. Fortunately, I never ate too much sweets and those cravings are very seldom, like yesterday. Whenever I ate sweets in the past, I did not notice anything obvious, but I am somehow still afraid to taste things now and then. And when I want to eat a jelly belly, I want to eat a jelly belly <g>. I have cannot substitute it with something else, so I have to distract me.

[Nadia]

Oh, well... that's good you don't get the craving often! I know what you mean about being afraid to taste things. And substitution is hard. I'm trying to fool myself as much as possible, but it's true... cravings can be pretty specific!

[Maybe]

Great, the 24. month has just begun and somehow I have an increased restlessness in my arms and legs. When does this hell end? Why is it getting worse instead of better after only 4 pills close to two years out? How can I be as bad as someone who has taken the drugs for months or years? I don't get it.

 

I am sitting at work and can't concentrate on nothing. My energy is non-existent. I am 31 and I need to be healthy NOW or my whole future will be worth nothing. With this **** going on and on I am getting really depressed. I am so tired and angry...how I would love to just punch the doctor who prescribed me the drug all day long.

 

"This is a new drug and it is well-tolerated" §&$%& moron....

 

I was back to 100% normal in 2010 and now I seem to get every symptoms that is possibly out there. It feels as if my body is going into the wrong direction.

[Punarbhava]

Woke up in the middle of the nigth, feeling weird in the back of my head, my spine and my calfs. It was aweful. I stood up, walked around a bit and it got better so I could sleep again. What the hell is that???

 

As expected I feel not too well today, a bit dizzy and my cns feels worn and whenever I eat something, even an apple or a banana, my digestive system makes some loud noises.

 

I cannot even say:"Hey, this particular symptom again, no problem, I know you!", because some symptoms I can't describe or they come and go as they please. How I am supposed to know how I should behave when I have no clue what is good or bad?

 

Though one minor symptom is quite new...the finger tips of my left hand sometimes feel a bit numb and hurt.

 

I very much can relate to what you have written. The fact that symptoms keeping changing, cycling and even new ones appearing, makes it so difficult since, one must constantly psychologically and emotionally re-adjust to the latest symptom(s),multiple times per day, every day, in an effort to cope with unrelenting uncertainty.

 

As you mentioned, IF the same symptoms appeared each day, at the same time and for the same duration, and same intensity one could more easily plan a psychological strategy since, there would be some degree of certainty (even if the certainty was painful) since, the predictability factor alone provides a daily schedule of events that one can work around or with etc.

 

However, the unpredictability factor requires us to roll with so many random and repeated punches, never knowing which direction and what intensity we'll be hit. As you know from experience, there is nothing certain to rely upon and this, in of itself, can provoke psychological confusion, frustration, anger, doubt and fear.

 

The only thing that kept me half-sane was TRUSTING that this would NOT last forever (although it was a regular challenge to keep the faith at the time). I had to force myself to trust and believe that my receptors were doing what they needed to do in order to bring eventual stabilization and CNS harmony in my future.

 

Sure enough, they have delivered what they set out to accomplish. Your's are still on their aggressive mission to win the war but make no mistake, they WILL WIN and when they do, you will begin to feel the freedom. Right now they are on their final mission.

 

I had terrible months leading up to turning the corner. While, I'm not symptom free...........I'm incredibly more comfortable .......don't feel regularly physically assaulted. I feel connected to life in many ways, rather than being in pure mental, physical, emotional and spiritual survival mode. I no longer have to engage in constant positive self-talk to keep myself going.

 

To be honest, I'm feeling battle fatigue (psychologically) but that's pretty common for those of us who have had severe and lengthy WD. However, despite this mental and emotional fatigue I do okay as long as I keep my mind occupied and engaged in distractions (which I am beyond grateful). I'm also becoming physically stronger and thus, more active which also helps in a huge way. This wasn't possible for me a couple of months ago.

 

My healing will likely be more linear from this point forward. This too will likely be the next phase you will soon enter.

 

Tough out this month. It will be easier to endure knowing that this will be the last hellish part of the journey. You've come this far.......you can do one more month.

 

Punar

[Altostrata]

That is really wonderful news, Pun. I'm so happy for you.

[Maybe]

Yes, great news, Pun! It is so good to see people recovering from this horror trip and being able to go on with "normal" life eventually. I hope that you will reach full recovery very soon

 

And as always thank you very much for your reassurance. It always helps me to come down when I needed to vent again. The frustration is hard to bear sometimes...

 

On the one hand I am very frustrated that I still have no day without symptoms and how it is to feel normal again. On the other hand I am thankful that my symptoms are being endurable most of the time. But still, I am missing doing sports, going out with friends and having fun without feeling weird. I am just longing for normality as we all do here.

 

I have to work on other heavy burdens besides wd and I cannot gather the energy and stress my cns while I am in wd. I often have the feeling that life is running through my fingers.

 

But you are right, there is no other way than toughing it out, as hard as it is...

[Punarbhava]

That is really wonderful news, Pun. I'm so happy for you.

 

Alto,

 

 

thank you so much for taking the time to send this message to me! It means more to me than you know! (all teary-eyed and grateful for your kindness).

 

Punar

[Punarbhava]

Yes, great news, Pun! It is so good to see people recovering from this horror trip and being able to go on with "normal" life eventually. I hope that you will reach full recovery very soon

 

Thank you so much Maybe. Your well wishes, along with Alto's really have brought a moving moment to my day!

 

And as always thank you very much for your reassurance. It always helps me to come down when I needed to vent again. The frustration is hard to bear sometimes...

 

Thank you for always appreciating my efforts. Most of all, I'm glad that I've been able to give reassurance. I'm beyond grateful for all who have walked before me and shared their experiences on the forums as well as helped those who were in the thick of WD.

 

Most of all appreciative to those who operate the forums.......giving us all a place to learn, support and share experiences.

 

On the one hand I am very frustrated that I still have no day without symptoms and how it is to feel normal again. On the other hand I am thankful that my symptoms are being endurable most of the time. But still, I am missing doing sports, going out with friends and having fun without feeling weird. I am just longing for normality as we all do here.

 

Yes, I completely understand. I predict you will begin to feel larger chunks of normality in a month or two.

 

I have to work on other heavy burdens besides wd and I cannot gather the energy and stress my cns while I am in wd. I often have the feeling that life is running through my fingers.

 

Maybe, I SO KNOW how you are feeling. I have 10 years of neglected home repairs and maintainence that have piled up and I was too sick (with multiple back to back WDs) to tend to any of it. I know the feeling re: like life is slipping through your fingers but I kept telling myself that once I'm recovered, I will whip all of this chaos into order (although TBH I had no concept of what it would feel like to be normal again but I kept pounding this positive thought into me over and over again to counteract the despair, frustration etc.).

 

Guess what? I've been working around this house for the last month (pacing myself though) and it's AMAZING just how much I've accomplished around here and I'm sharing this with you to let you know that your life is not slippping away.

 

It's just "on hold" TEMPORARILY. You'll see just how quickly you will get your life back once you turn the corner.

 

BTW, I do a lot of my own home renovations, have my own power tools etc. and just the other day I actually felt like building something. (LOL) That's HUGE considering how incompetent (both physically and mentally) I've been for so long. The fact that I had the desire to engage in such thought feels like a miracle to me.

 

I'm going to wait a few more weeks before I pull out my power tools but I can't wait to work on a little project. Soon, I will be taking on the bigger projects.

 

BTW, I still have some down days but they are not the majority of my days any longer.

 

But you are right, there is no other way than toughing it out, as hard as it is...

 

Not much longer of toughness will be required.

 

I will be happy to see you turn that corner. Anyway, wont' write anymore since, I don't wish to be repetitive.

 

Much More Fantastic Healing to You!

 

 

Punar

[ajay]

Punar, your update is fantastic (I have hope that I will be able to handle household projects again someday). Thank you for posting this - it gives me hope.

 

Maybe, I hope you will soon see the results of the healing that is going on within you. I understand the feeling that life is slipping away. It may not seem like it, but 31 is still young and you will have plenty of time on the other side of your recovery.

 

Wishing you some 'normal' days...