RusTW: Seroquel CT then reinstated

[Gridley]

1 hour ago, RusTW said:

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[RusTW]

Update the night before last good sleep. Even fell back asleep after waking up in the morning for an hour. Yesterday was a good window low symptoms and last night.

Today not-so-good back to a wave flu symptoms moderate anxiety 

[RusTW]

Update yesterday woke up any mild wave that turned into a window for almost the whole day and evening. Sleep not so good because of the cold air. Feeling flu-like symptoms again today lots of fatigue moderate anxiety

[RusTW]

notes in a bad wave-flu symptoms-spasms in legs-akathisia-

weird gut pain is gone during this wave

[manny03]

2 minutes ago, RusTW said:

notes in a bad wave-flu symptoms-spasms in legs-akathisia-

weird gut pain is gone during this wave

 

Just keep at it. I remember the Akathesia, and it was intolerable. Literally wanted to throw myself. 

[Dejavu]

Hang in there Rus! I'm having a bit of a hard time with vision issues myself right now. I hope your wave is short-lived; yours usually are, aren't they? At any rate, we've got this!

[RusTW]

17 hours ago, manny03 said:

 

Just keep at it. I remember the Akathesia, and it was intolerable. Literally wanted to throw myself. 

I've had it before to Manny. It's made a return appearance. When I get this I get leg spasms also. Something strange is happening with the gut thing it seems to be easing up a little bit so hopefully symptoms are moving out of my stomach

[RusTW]

16 hours ago, Dejavu said:

Hang in there Rus! I'm having a bit of a hard time with vision issues myself right now. I hope your wave is short-lived; yours usually are, aren't they? At any rate, we've got this!

D good looking out We do have this .life goes on with us no matter how sick we are we are living it out the best we can.

[RusTW]

As @miragesays we are the little train that can.

[RusTW]

Update two to three weeks out from my taper I got hit with a bad 5 or 6 day wave intense akathisia flu feeling which now I think was a kidney infection. Back in May I had a CT scan done that reveal kidney stones and nobody told me I just recently found out.

Just had about seven decent days I wouldn't say 100% windows but pretty good days. Very low GI symptoms for the past 2 or 3 weeks. I'm feeling like the taper helped with this I could be wrong. Had to go to the ER because of the back pain from the kidney stones they ran tests didn't see kidney stones but they showed an infection in my white blood cell count? Yesterday I pissed out  1

Overall I'm still in withdrawal and windows and waves back and forth.

[manny03]

1 hour ago, RusTW said:

Update two to three weeks out from my taper I got hit with a bad 5 or 6 day wave intense akathisia flu feeling which now I think was a kidney infection. Back in May I had a CT scan done that reveal kidney stones and nobody told me I just recently found out.

Just had about seven decent days I wouldn't say 100% windows but pretty good days. Very low GI symptoms for the past 2 or 3 weeks. I'm feeling like the taper helped with this I could be wrong. Had to go to the ER because of the back pain from the kidney stones they ran tests didn't see kidney stones but they showed an infection in my white blood cell count? Yesterday I pissed out  1

Overall I'm still in withdrawal and windows and waves back and forth.

 

What? Who the **** did the CT Scan originally and not tell you about the kidney stones.

 

When they discovered mines, I asked them to give a hard copy of the results so I could give to my MD for maintenance. 

 

How large was your stone? 

 

 

 

 

[RusTW]

1 hour ago, manny03 said:

 

What? Who the **** did the CT Scan originally and not tell you about the kidney stones.

 

When they discovered mines, I asked them to give a hard copy of the results so I could give to my MD for maintenance. 

 

How large was your stone? 

 

 

 

 

Dont know. I had to go into the ER room on Friday and they couldn't find any Stones .they were there in June gone now supposedly and then yesterday I pissed one out. Dealing with the medical people is a real joke.

I definitely have stones and they're making me sick. My GP ordered the CT scan in june sent a referral to my urologist and nobody contacted me.also have enlarged prostate .

[manny03]

5 minutes ago, RusTW said:

Dont know. I had to go into the ER room on Friday and they couldn't find any Stones .they were there in June gone now supposedly and then yesterday I pissed one out. Dealing with the medical people is a real joke.

I definitely have stones and they're making me sick. My GP ordered the CT scan in june sent a referral to my urologist and nobody contacted me.also have enlarged prostate .

I'm sorry to hear that Rus. Seems whoever did the scan didn't look carefully. 

 

At least now you'll be treated. 

[RusTW]

@manny03yeah I got more stoners or as somethings wrong with kidneys a infection probably. 

They are going to put a scope up my piss tube next month. Pretty close to my birthday actually.

They want to do an MRI of my prostate the doctor trip me out and told me that the standard tests can't pick up prostate cancer. They said they seen it in large din one of the scans with a lobe?

I get up and P at least two or three times a night. I don't have any problem going pee but then when I go back to sleep I have to get up again so I don't know if that's cortisol because that makes you go pee more or if it's a kidney infection. The doctor was tripping me out talking about cancer in the prostate and that they had to look carefully.

[manny03]

6 minutes ago, RusTW said:

@manny03yeah I got more stoners or as somethings wrong with kidneys a infection probably. 

They are going to put a scope up my piss tube next month. Pretty close to my birthday actually.

They want to do an MRI of my prostate the doctor trip me out and told me that the standard tests can't pick up prostate cancer. They said they seen it in large din one of the scans with a lobe?

I get up and P at least two or three times a night. I don't have any problem going pee but then when I go back to sleep I have to get up again so I don't know if that's cortisol because that makes you go pee more or if it's a kidney infection. The doctor was tripping me out talking about cancer in the prostate and that they had to look carefully.

I hate when they do that. Though, it's a precaution just to make sure it's just an enlarge prostate. 

 

With the urgent need to pee, it's more likely your kidney stones causing the symptoms since I have the same symptoms. 

[RusTW]

Notes went back into a wave yesterday after a pretty good break low symptoms. Symptoms hitting me now are muscle spasms in the body and akathisia. Still trying to navigate during the waves. Windows seem to be fairly clear mentally low to no GI symptoms now. Early morning fatigue that last into the afternoon. Visual distortion 3 ft away from my eyes is blurry. This has happened over the last 3 months..

During the initial 1 - 3 days of my waves the akathisia will cause agitation and I'm finding myself getting in trouble more and more with the girlfriend over this. I think it's hard for her to understand how this feels and she's insisting on me being normal. LOL

 

Sleep cycle is averaging about 5 or 6 hours per night. That seems to be the longevity of the Seroquel in my system. I can't seem to break that 6 hours and lucky to get that. I do wake up in the morning and fall back asleep in small increments to where I dream only lasting minutes though.

Napping still hasn't happened yet. I do doze and then wake up feeling completely lost and out of it. I think that this is progression now because I used to get what they call sleep starts or sleep jerks when I would try to nap and now I don't get them. I actually doze a little bit and wake up lost.

Diet is still very strict low to no sugar mostly good carbs good protein no Dairy. Gut health is going back to what I consider normal for myself. This is happened since the last wave ended.

Still holding after last taper. Feeling much better even during this wave. Onward

[RusTW]

6 minutes ago, manny03 said:

I hate when they do that. Though, it's a precaution just to make sure it's just an enlarge prostate. 

 

With the urgent need to pee, it's more likely your kidney stones causing the symptoms since I have the same symptoms. 

They seen enlarged prostate. This was after they tried to reinstate  testosterone and that backfired. That can enlarge your prostate so hopefully that's it.Its genetic my father had enlarged prostate so hopefully nothing. These damn withdrawals can mimic anything also.

[manny03]

Just now, RusTW said:

They seen enlarged prostate. This was after they tried to reinstate  testosterone and that backfired. That can enlarge your prostate so hopefully that's it.Its genetic my father had enlarged prostate so hopefully nothing. These damn withdrawals can mimic anything also.

I'm not looking forward to my 40s and plus since like your pa, my pops also suffers from enlarged prostate, and some symptoms mimic prostate cancer. 

 

Anxiety or withdrawal can mimic any worse scenario illness. The only lingering withdrawal symptom that I have left is the thin stools and feeling off balance when I eat a bit much. Besides that, I'm almost done with this. 

 

Read your other post and the waking up and feeling lost and out of it, occurred to me from late Oct to mid Nov of last year before it switched to g.i. Symptoms in Dec. It was a horrible feeling to feel. 

[RusTW]

35 minutes ago, manny03 said:

I'm not looking forward to my 40s and plus since like your pa, my pops also suffers from enlarged prostate, and some symptoms mimic prostate cancer. 

 

Anxiety or withdrawal can mimic any worse scenario illness. The only lingering withdrawal symptom that I have left is the thin stools and feeling off balance when I eat a bit much. Besides that, I'm almost done with this. 

 

Read your other post and the waking up and feeling lost and out of it, occurred to me from late Oct to mid Nov of last year before it switched to g.i. Symptoms in Dec. It was a horrible feeling to feel. 

Can u nap?

[manny03]

2 minutes ago, RusTW said:

Can u nap?

As of July of this year I've finally be able to take 15-20 minute naps. 

[RusTW]

11 hours ago, manny03 said:

As of July of this year I've finally be able to take 15-20 minute naps. 

I bet that sure helps. I'm to the place now where I wake up all lost like that the feeling doesn't scare me I kind of liked it because it feels like I'm getting closer to actually going into unconscious sleep

[manny03]

10 minutes ago, RusTW said:

I bet that sure helps. I'm to the place now where I wake up all lost like that the feeling doesn't scare me I kind of liked it because it feels like I'm getting closer to actually going into unconscious sleep

Oh I know that feeling. This was an anxiety issue also were I was scared to go into unconscious sleep since I thought I'd never wake up again. 

[RusTW]

9 hours ago, manny03 said:

Oh I know that feeling. This was an anxiety issue also were I was scared to go into unconscious sleep since I thought I'd never wake up again. 

Lol I went through that too. I got it after taking Ativan and haven't been able to sleep on my own since

[RusTW]

Notes within the waves there seems to be a little more control now. Very happy to say also low to no GI symptoms and digestive system functioning as it should. I still feel like this was taper related

[RusTW]

Update my recent MRI of my prostate area revealed a lesion in peripheral zone of the prostate 1 × 2 cm. The urologist wants to biopsy in December to see if this is cancer. He's saying It's a 50-50 chance.the I scored high on the visual probability from the radiologist.

My GI doctor is saying last November they did a cat-scan in that area and nothing was seen so hopefully if this is something bad it's new.

The other possibilities are prostatitis either due to a yeast infection there or Mast Cell Activation causing inflammation and benign lesions

I'm curious to know that if I do have mast cell syndrome due to the antidepressants screwing up my antihistamines. From my understanding this can affect your prostate in the growth of benign and cancerous tumors

 

Symptoms I'm having are fatigue flu like symptoms burnt tongue feeling visual distortion anxiety with agitation sweating insomnia. During windows which seemed to last about six to eight days seem to be doing fairly okay but still having urinary symptoms and flu symptoms.

The positives I do still get sleep. Even if it's for a hour or two it's still happening enough to where I can function even feeling sick. This is giving me more confidence to battle the withdrawals. Still holding up well at my job. on Thursday I received a call from the urologist saying they may have seen some bacteria in my urine so antibiotics may be prescribed. I won't take them know I'll find something natural.

I've been camping throughout the summer and I started to go fishing again in my kayak and starting to feel a little bit more of myself back again. getting better at finding acceptance

Hopefully the next update will have a little bit more promise.

Off into the storm again seeking that warm shelter that we call Windows best of luck to you all in the challenge of Our Lives

[manny03]

Man, hoping for the best. Haven't been here since I'm dealing with my stones, and or weird sensation on my back and pelvic areas. Though, besides that, I just hope its prostatitis they found with you. 

 

 

[RusTW]

They put me on Flagyl today for a bacterial infection in my urinary tract. I'm bracing up for a fun ride

[Rabe]

Just wanted you to know Im thinking about you Rus!!  Gosh you are dealing with so much!!  Take care and heal well and quickly I hope!!

[RusTW]

@RabeThank you.Still powering through all this fun stuff.

Definitely gotten a lot better at dealing with the waves.

Hopefully once I get back on track with my health these waves won't be so extreme.

Getting some pretty moderate old me days back. Getting out there and going fishing and kayaking again even though feeling like s*** it feels good to be out there living.

[Rabe]

SO happy to hear that Rus..that you are able to do some of those things that you love.  Hope it continues for you!

[RusTW]

@Rabe good to hear from you. I made a project also to fix my boat  and get it out on the Water by next spring and I actually got it done in about 2 or 3 weeks. I'm finding that using the racing anxiety to get things done is the best thing I can do for myself.

 

[RusTW]

 Here's a good video for everyone to watch it'll get you motivated to get past your bad days. He talks about suffering and overcoming it. Enjoy

[RusTW]

Update tongue is coming back to life.Its turning red again and cracks are disappearing. Hope health is returning. 

[Rabe]

Hi Rus....was rereading your posts and said again you have been in a waterfall of events in your life of late!!  I wanted you to know I think about you so often and so hope you continue to have these stretches of better days.

SO excited to hear about your boat!!  Good for you!  That must have really felt good!

 

My latest is the SIBO test I finally was able to get done came back very positive and they want me to take Xifaxan?  The pharmacist talked about low dose Naltrexone?  I dont like the sounds of either.  I remember you sharing your experience with this right?  Was wondering if you might share your thoughts.  I had seen a natural doctor 2 years ago and he wondered about candida and mentioned grapefruit something I think?  Im trying to remember.  I guess you can get really sick with the treatment and I think he talked about charcoal or something.  IDK.  I feel lost.

I think you talked about garlic but it is on the list of foods not to eat on a SIBO diet so that was confusing...but with my mind I may be remembering incorrectly as well.

 

Well, take care, Rus.  I hope your kidneys and all stay healthy now for quite some time!!  I had repeated kidney infections as a child and they think the potassium wasting as well as now the SIBO is related to that...the SIBO cause of all the antibiotics.  Interesting.  Take care!!!

[RusTW]

@Rabe Fage yogurt  0 fat is what has finally worked.it combats sibo and candida very well.topically and internally. 

 

[RusTW]

On 11/18/2019 at 8:42 PM, Rabe said:

Hi Rus....was rereading your posts and said again you have been in a waterfall of events in your life of late!!  I wanted you to know I think about you so often and so hope you continue to have these stretches of better days.

SO excited to hear about your boat!!  Good for you!  That must have really felt good!

 

My latest is the SIBO test I finally was able to get done came back very positive and they want me to take Xifaxan?  The pharmacist talked about low dose Naltrexone?  I dont like the sounds of either.  I remember you sharing your experience with this right?  Was wondering if you might share your thoughts.  I had seen a natural doctor 2 years ago and he wondered about candida and mentioned grapefruit something I think?  Im trying to remember.  I guess you can get really sick with the treatment and I think he talked about charcoal or something.  IDK.  I feel lost.

I think you talked about garlic but it is on the list of foods not to eat on a SIBO diet so that was confusing...but with my mind I may be remembering incorrectly as well.

 

Well, take care, Rus.  I hope your kidneys and all stay healthy now for quite some time!!  I had repeated kidney infections as a child and they think the potassium wasting as well as now the SIBO is related to that...the SIBO cause of all the antibiotics.  Interesting.  Take care!!!

Rabe the bacteria that causes sibo can spread through your whole body. Especially in your urinary system. That's what I'm going through now it move from my stomach into my urinary tract.

Cutting out the bad carbs and refined sugar will help. I was told also not to use garlic because of my diet but it was the only thing that worked and I continue to use it a half a clove in the morning and 1/2 a clove at night chopped fresh. With food. To start out I would use it one day and take 2 days off.

Flax seed and oatmeal in the morning will move the toxins out of your body. Do not use clay it will block your drugs and your gut.

Make sure you're taking antioxidants to move the toxins out also. Cut out all acidic fruits and Foods.

Try to eat a spoonful of Fage yogurt  0 fat with each meal .  This Yogurt seems to have the right combination of probiotics to Aid the immune system . if you can do dairy. If not coconut yogurt low or no sugers.

As far as ANTIBIOTICS I tried flagyl for 7 days. It helped me with low side effects. Use a lot of yogurt during treatment. 

Expect to feel like s*** as you're going through all of this it is not an easy journey to get this out of your body. My experience was everything I tried to do I got major die-off and it added to my withdraws in a major way and still does. I'm about 60% recovered from this and it takes some time to heal. Create the environment in your gut for the good bacteria. Eat probiotics and prebiotics. If you can heal from this I think your withdraws will be less severe. For really good information look on YouTube his name is candida Crusher and he has a lot of good information for everybody. He has experience with sibo and candida very informative. This is something that is very hard to go through during withdrawals. Your body needs to sleep and recover to recover from this so take it easy and good luck to you. Any questions let me know.