FeralCatman: recovering from Seroquel

[Fantini]

Hi @FeralCatmanFirst of all, I would like to thank you for sharing all this information about Seroquel. 😺I have taken this medicine for many years and I recognize the damage it can cause. I hope you keep getting better every day! I have a question and I think you can help me. During the WD I started to have some involuntary movements accompanied by agitation. I don't know if this is akathisia or some weird symptom caused by this crap. Did you go through something similar?

All The best,

Fantini 

[FeralCatman]

@Fantini Years ago while still on a high dose of Seroquel (700 mg) I used to get twitches in my hands that were so bad I needed both of them and had to focus just to hold onto a coffee cup. I actually broke half my dishes because of it. I could be holding a plate and then randomly the hand that was holding it would just throw the plate across the kitchen. It went away as I lowered the dose. I still get weird twitches and vibrations in my muscles throughout my body but they are very minor and not every day. They just randomly come and go. What happens now may actually have nothing to do with the Seroquel or withdrawal but there is no way to know for sure. If you look at the Wikipedia page for Quetiapine (Seroquel) and go to the pharmacology section you can see the receptor binding profile. At one level or another it binds with just about everything. The lower the Ki number the stronger the affinity is for that receptor. Here is the link. It gives numbers for both the drug and its metabolite.

 

https://en.wikipedia.org/wiki/Quetiapine#Discontinuation

 

Looking at that profile it is no wonder that anti psychotics cause so many problems. The rest of the page is a bit outdated as the references cited are old and a bit skewed to those favoring medications but the binding profile is what it is.

[FeralCatman]

On 7/2/2022 at 10:49 AM, FeralCatman said:

UPDATE

 

There has been a change in night time symptoms.

 

Last night I kept being woken up with an urge to urinate about ever hour. I have changed nothing in meds or diet or fluid intake or anything else

 

When this started the last time there were adrenaline surges each time I woke up that got worse when I actually urinated. After I was done and went back to bed they went away until the next time I was woken up with the same thing. Urinating was also difficult and if I pushed too hard there would be a massive adrenaline surge along with it.

 

This time there are no adrenaline surges. Instead of the adrenaline surges it feels like the skin all over my body is burning like with a sunburn. Once I am done urinating and lay down it goes away until the next time I wake up.

 

One odd thing is that this morning when I woke up my hands and feet were not blocks of ice like they have been first thing in the morning for months. They were not quite fully warm but much better. So, something also changed with my circulation between yesterday and today.

 

My assumption is that is is part of another 'Wave' and that more changes are being made to my nervous system and that this is just another part of recovery. It's left me a bit tired today but I otherwise feel okay. It will be interesting to see how long this set of symptoms lasts.

UPDATE

 

So the WAVE continues. Most of the symptoms I had earlier this year are back and my sleep schedule has shifted again though not dramatically. However, it is much less intense than before and after only 5 days there are signs of improvement as compared to the last time where it took weeks of being completely miserable and non-functional before any improvement started so not as bad this time. I still have had no non-functional 'Bad Days' but am downgraded to 'Mediocre Days' for now. On Saturday and Sunday I had an uptick in my fasting glucose up to 125 and started to panic but then it dropped down even lower than it was. This morning it was 103 which is just a hair above normal. So, other corrections to my body are being made on the journey back to homeostasis. I am also having a simultaneous flare up of my Ankylosing Spondylitis so YAY on that for the double whammy 🙄 . I always seem to have the best timing. I am having the random transient allergy symptoms again and so looked up dysautonomia and allergy symptoms and it turns out that an imbalance in the autonomic nervous system can make allergy symptoms worse even though the allergy itself is not worse. Weird. However this type of stuff started after I started the seroquel which doesn't make sense because it is an antihistamine. So, given what I read, it must be that because this drug was causing an imbalance from the very start it also made my allergy symptoms worse. The more reading I do the more it seems like an imbalanced autonomic nervous system can act as an amplifier for almost any issue you have and make it feel much worse than it really is. So even if the actual condition does not change the 'felt effect' is worse.

 

In any case I am back to doing more resting and waiting than doing what I want to be doing but I am not incapacitated like before so I am yet another notch up the ladder it seems even though I feel like crap right now. I will post again when things change.

[Ariel]

@FeralCatman

Sending you a bouquet of bravery and strength to support you through this wave <3

[tsranga]

6 hours ago, FeralCatman said:

The more reading I do the more it seems like an imbalanced autonomic nervous system can act as an amplifier for almost any issue you have and make it feel much worse than it really is

 

Completely agree. This has been my experience as well. The curious thing for me is that both times when I had covid, my autonomic symptoms went down, I could eat, sleep, breathe, smell, see and sweat normally. 

 

Drastic variations in heat/cold/pressure/humidity are harder for the body to adapt to, especially when falling asleep or waking up. This is my main issue.

[FeralCatman]

UPDATE

 

So my average heart rate has gone down to 57 and the night time spikes in heart rate are gone. My BP is low but normal. So, it's time to start slowly cutting back on the Metoprolol before it starts causing problems. I just sent a message to my PCP to check in and see what he thinks but he usually agrees with me. I will be doing a 10% / week taper. It will take almost 7 months to completely stop it. Tomorrow is my last day on the Nexium so that is gone. I am going to give it a couple of weeks for my stomach to recover and then slowly start tapering up the doseage of Pro Biotics.

 

New symptoms: Achy leg muscles like I have the flu but do not have the flu. I took a home COVID test just to be sure and that is negative. Any one else have issues with achy muscles during withdrawal?

[Ariel]

@FeralCatman

22 minutes ago, FeralCatman said:

New symptoms: Achy leg muscles like I have the flu but do not have the flu. I took a home COVID test just to be sure and that is negative. Any one else have issues with achy muscles during withdrawal?

Yes, I have had that a lot! Had it for years, it got better, has recently returned. 

Muscle/joint aches, not dissimilar to "flu-like" symptoms. 

Usually I just let it be. If it gets too bothersome I occasionally take ibuprofen, which helps. 

Hadn't taken ibuprofen in over a year, recently turned to it again. Very careful about taking after a meal and limiting use.

[FeralCatman]

@Ariel Thank you for the reply (and the bouquet 😉) . That's good to know.

[FeralCatman]

UPDATE

 

I heard back from my PCP already. He agrees with my plan and reasoning. So, this Sunday I will start slowly cutting back on the Metoprolol. Should be off of it by February 😁😸😸😸😸

[Valerio]

6 hours ago, FeralCatman said:

UPDATE

 

I heard back from my PCP already. He agrees with my plan and reasoning. So, this Sunday I will start slowly cutting back on the Metoprolol. Should be off of it by February 😁😸😸😸😸

Good Luck!

By The way...Do you have articles on how acupuncture can improve WD symptoms? I'm putting together some texts to share with my physical therapist. TKS a lot

I can send to you some texts...If you want!

 

 

[FeralCatman]

@ValerioI actually don't have any articles on acupuncture and withdrawal. My acupuncturist is out for a bit for surgery so I can't ask him right now but once he recovers I will ask him. What I can say is the treatments that he has done are about strengthening the parasympathetic response and balancing out the autonomic nervous system. When I was still tapering he also did treatments to help with detoxification. You might want to try looking up dysautonomia and acupuncture since that's basically what they're treating.

[tsranga]

19 hours ago, FeralCatman said:

@ValerioI actually don't have any articles on acupuncture and withdrawal. My acupuncturist is out for a bit for surgery so I can't ask him right now but once he recovers I will ask him. What I can say is the treatments that he has done are about strengthening the parasympathetic response and balancing out the autonomic nervous system. When I was still tapering he also did treatments to help with detoxification. You might want to try looking up dysautonomia and acupuncture since that's basically what they're treating.

 

Do you recall the acupuncture points for your treatment? 

 

For me it's mostly around the belly button, shins and firearms, occasionally forehead.

[FeralCatman]

@tsrangaI do not recall I just kind of lay there and let him do his thing it's usually a little different every time. I can ask him for specifics when he gets back from surgery if you would like.

[Guest]

I could n send you a message with a picture. But this how I feel. 
 

i found this picture. Is about Trauma recovery 

[FeralCatman]

I have been through periods of time in my life that felt just like that so I definitely identify with it. That's why I find it helpful sometimes to either read an old email or I'll look through the photos on my phone to remind myself that it wasn't always that bad and that I've had times like that before and that they always pass. I'm old enough now to have the perspective in looking back on my life and knowing that times like these always pass and that there will be good times again.

[tsranga]

On 7/9/2022 at 3:12 PM, FeralCatman said:

@tsrangaI do not recall I just kind of lay there and let him do his thing it's usually a little different every time. I can ask him for specifics when he gets back from surgery if you would like.

that is ok. thanks

[FeralCatman]

@Frogie

UPDATE

 

I have most of my quarterly blood work back.

 

Good news:

 

My diabetes is now officially gone. The A1C was 5.5% which matches the home tests so that is excellent. 😁

 

All of my lipid numbers are now very, very normal so I can come off of the cholesterol medications. 😁

 

My thyroid function is recovering. My TSH was 0.798 which has proven too low for me in the past so I will have to cut back on my synthroid which is a good thing. This may be the source of increased anxiety since this has happened to me before since any number below 1 is too low for me.

 

My red blood cell numbers have recovered and are now all normal.

 

I am off the Nexium and no stomach trouble so far.

 

Bad News:

 

My globulin level is low which may explain the fatigue. This could be immune related but it can also be a reaction to the Metoprolol which I have started tapering already. Unfortunately it's going to take awhile to get off of this stuff.

 

My kidney values are off but it may be a touch of dehydration due to being first thing in the morning.

 

Even with all of the good news this will unfortunately leave me with having to make several medication adjustments at the same time which makes me very nervous. On top of this my doctor is on vacation so it will be 2 weeks before I can discuss any of this with him. I am going to cut back on the synthroid starting tomorrow morning and will go from 100mcg to 88mcg. Good thing I always keep extra laying around.

 

Questions

 

Can you just stop a statin (Crestor) or do I need to reduce that step wise as well? I am only on 5mg. Pretty sure you can just stop it but wanted to check.

 

Any input on moving forward is appreciated.

[FeralCatman]

@FrogieI know these are not psych medications but since I am still in protracted withdrawal I wanted any input that is available so I don't screw myself.

[FeralCatman]

@FrogieI should also add that last August when I quit the Seroquel I was 197 lbs. Now, 11 months later, I am 167 lbs. 30 lbs in 11 months. Amazing what getting off Seroquel can do for you. Prior to this, no matter how hard I tried, I could never lose any more weight. Now, in the least active 11 months of my life due to WD symptoms the weight just came right off all by itself.

[Frogie]

@FeralCatman

 

Wow! It sounds like all your bloodwork came out really well. Do you have hypothyroidism? There is something called "clinical hypothyroidism", caused by these psychiatric medications. That's what they thought I had all through tapering, but then my thyroid did crash. I am on a very small amount of Levothyroxine though. Just be careful of cutting your Synthroid yourself without your dr suggesting the decrease and what dose.

 

Although I am not a dr, I would have to agree that the globulin level is probably related to the  Metoprolol and that can be addressed with your dr also. The kidney function is very well because of dehydration, if you had your blood drawn first thing in the morning. I always drink at least 3 bottles of water before I get my blood drawn and that had my kidney and red blood count come out perfect every time. But that was my dr's suggestion.

 

I would think it would be ok to just stop the Crestor. I was Lipitor and it made my liver ache so I just stopped it with no problems. And I have perfect cholesterol without it. Is your cholesterol ok now? Again did the dr suggest not taking it anymore?

 

The weight loss is very awesome and pretty normal. They always tell you these medications don't cause weight gain, but I found that they did. I have lost 35 pounds, but I went on weight watchers because I couldn't lose it because of my thyroid. 

 

Overall, it sounds like you received a good health record. I'm very happy things are turning out for you.

[FeralCatman]

@Frogie First I will post comparison blood work on values that are or were off for analysis as I have had another request for this so they can comment. Here it is.

 

                           4/26/22           7/12/22

 

Lipids (on 5mg crestor)

 

Cholesterol             195                   152

HDL                          62                    55

LDL                         120 H                 88

Non HDL                 133 H                97

Triglycerides             67                   44

 

TSH (on 100mcg synthroid)

 

                                 1.72                 0.798

 

CMP

 

BUN                           13                   20 H

Globulin                     2.3                  1.7 L

Glucose                     135 H              116 H

 

A1C                             6.2 H               5.5

Avg Glucose              131                   111

 

 

 

 

 

 

[ChessieCat]

19 hours ago, FeralCatman said:

Can you just stop a statin (Crestor) or do I need to reduce that step wise as well? I am only on 5mg. Pretty sure you can just stop it but wanted to check.

 

I think it would be okay to just stop it.

 

Great numbers on the lipids and A1c.  I don't have any knowledge on the others so I won't comment on those.  But I know how great it feels to get the numbers back to normal because I have recently done the same thing.

[FeralCatman]

18 hours ago, Frogie said:

@FeralCatman

 

Wow! It sounds like all your bloodwork came out really well. Do you have hypothyroidism? There is something called "clinical hypothyroidism", caused by these psychiatric medications. That's what they thought I had all through tapering, but then my thyroid did crash. I am on a very small amount of Levothyroxine though. Just be careful of cutting your Synthroid yourself without your dr suggesting the decrease and what dose.

 

Although I am not a dr, I would have to agree that the globulin level is probably related to the  Metoprolol and that can be addressed with your dr also. The kidney function is very well because of dehydration, if you had your blood drawn first thing in the morning. I always drink at least 3 bottles of water before I get my blood drawn and that had my kidney and red blood count come out perfect every time. But that was my dr's suggestion.

 

I would think it would be ok to just stop the Crestor. I was Lipitor and it made my liver ache so I just stopped it with no problems. And I have perfect cholesterol without it. Is your cholesterol ok now? Again did the dr suggest not taking it anymore?

 

The weight loss is very awesome and pretty normal. They always tell you these medications don't cause weight gain, but I found that they did. I have lost 35 pounds, but I went on weight watchers because I couldn't lose it because of my thyroid. 

 

Overall, it sounds like you received a good health record. I'm very happy things are turning out for you.

@FrogieAccording to my Endocrinologist I have Hashimotos Disease (Hypothyroidism) because I have high Anti-thyroid Antibodies. The problem is that the numbers keep fluctuating wildly and I can never get stable on a synthroid dose for very long. Back in 2018 I had been stable on 125 mcg synthroid for awhile. I had a TSH done and it was 3.5. Then, 5 weeks later after severe anxiety for multiple days and very high heart rate my TSH was undetectable and I was overloaded on synthroid. We ended up having to cut all the way back to 50 mcg. So, my TSH has been as high as 7.6 and as low as undetectable and then pretty much everywhere in between. I think a lot of this has to do with medications but no one seems to want to sort it out.

 

Thyroid Back Story

 

After this sudden drop happened the symptoms were severe. This was in March 2018. My psychiatrist at the time decided to try to switch me to Trileptal from Tegretol while this was going on thinking that the side effects would be less. There was no cross taper just a direct switch. I asked if blood work should get done and he said it was not necessary as problems were 'Rare'. A few days later I ended up in the hospital for what I thought was severe anxiety. Once in the hospital they discounted they thyroid issue and wouldn't cut back any more. The discovered that my sodium was low. So, in their expert opinion, they cut back my Seroquel from 700 mg to 500 mg and stopped the Trileptal cold turkey and replaced it with Ativan. I immediately got very sick. For 3 days they insisted it was 'Just Anxiety' but I kept getting sicker. No one was checking on me because they were too busy messing with their computers. I tried to eat and go to group as suggested but  did not know that my digestion had shut down so everything was going rotten in my stomach. On the end of the third day I started to projectile vomit all over the place. This was when they realized it was not anxiety. They transferred me to the medical ward. They tried to get me into the ICU but it was full. My sodium had crashed to potentially deadly levels, my digestion had shut down, my ADH hormone levels that help control kidney function were way out, and my heart rhythms were very erratic and I was headed for cardiac arrest. They had to call in specialists because it was a weekend and loaded me up with salt pills and a few IV's. I very nearly died. If I did what I normally do when sick and isolated in my patient bathroom instead of staying out and visible I would have died on the floor of my bathroom that night. After 5 days they gave me a choice. Go back to the psych ward to recover or go home. That was a no brainer. I got the hell out of there and recovered at home. When I got home I was not functional for the first couple of days and had to have people in my house to help. For the first time in my life I was afraid to be alone and could not even manage to count out my pills. I had to restart a low dose of Tegretol on my own to prevent seizures. I called my psychiatrist at his on call number to ask for advice and it was Friday night. He got mad and said it could wait until Monday and that I should not have called him after hours and left me to figure things out for myself. So, I started looking for another psychiatrist. I was a complete wreck for 3 months after that and once recovered I continued tapering the Seroquel and now here I am on SA. This whole expereince has left me with a huge fear of hospital and made my PTSD infinitely worse. For 2 years after that I had panic attacks just getting my blood drawn so I avoid hospitals like the plague now. Not a great thing when you have chronic illnesses to deal with.

 

So, as a result of all of this, when I see a sudden drop in my TSH I immediately panic and it puts me right back in that ward again.

 

I checked the date on my 88mcg synthroid and they are expired so I have to stay at 100mcg for a few more days. I am going to message my PCP and he will get it when he gets back in the office on Tuesday. I am sure he will cut me back to 88mcg or lower. Probably 75 mcg.

 

Thank you for the input on the Globulin levels. That is reassuring. Same with the statins. He would like to see me off the Crestor and I think these numbers are good enough to warrant getting off the low dose. I will ask all of these question in my message to my PCP and will have my answers on Tuesday.

 

 

[FeralCatman]

@ChessieCat Thank you for the input. Always appreciated. 😉✌️😺😺😺😺

[OldDodgy]

@FeralCatmanThe normal values aren’t there but I am so please you are doing so well. I had hoped you could post Creatinine , Electrolytes, Liver function and things like HB MCV Haematocrit so I could see if it’s a dehydrated sample. 
 

What I have discovered is that Crestor lowers globulin so that might be a factor. Personally I would consider stopping it.  
If you are leaking globulin a simple urine test will show that. 
You were concerned about the low TSH. I have looked into this and though folk prefer over one, I found a source saying over over 0.4 was acceptable. I think I would go on how you feel as we had to in the old days. 
Too much Thyroxine will give you anxiety, raised heart rate, rapid weight loss etc 

MY comments are simply for your interest as a fellow traveler. I am not insured to advise you of course and your medic is there for you. 
 

You have done wonderfully well —stopping quetiapine helped my Lipids HBIAC and at last I am “normal”. 

 

OD 
 

 

[Frogie]

@FeralCatman

 

Cholesterol             195                   152

HDL                          62                    55

LDL                         120 H                 88

Non HDL                 133 H                97

Triglycerides             67                   44

 

These numbers look normal to me, but again I'm not a dr. You could try dropping the Crestor and retesting in 4-6 months and see if it makes a difference.

 

TSH (on 100mcg synthroid)

 

                                 1.72                 0.798

 

Your TSH is very low on 100 mcg, so I would suspect your dr will adjust that. Mine runs around 2.0 on 25 mcg of Levothyroxine but everyone is different. Believe it or not I had a reaction to Synthroid, but do fine on the generic Levothyroxine.

 

 

CMP

 

BUN                           13                   20 H

Globulin                     2.3                  1.7 L

Glucose                     135 H              116 H

 

A1C                             6.2 H               5.5

Avg Glucose              131                   111

 

Your BUN and Globulin I would say is dehydration, but your dr would know more. It is not super high so I wouldn't put much thought into it. Your A1C and Glucose are going down it looks like you are doing fine.

 

Did you have a CBC panel ran? RBC will really tell you if it's a little high it is due to dehydration.

 

Next time you have bloodwork done, drink plenty of water before and I bet your results will be much better than they are now. You can have as much water as you want before blood work, you just have to fast.

 

 

[FeralCatman]

@OldDodgy Here are the full set of labs just to be thorough. Any input is appreciated. 😉✌️😺😺😺😺

 

LIPID PANEL

Component                                          Your Value       Standard Range                                         Flag

Cholesterol                                                   152 mg/dL      112 to 199 mg/dL

Triglycerides                                                  44 mg/dL      mg/dL                                     

REFERENCE RANGE:
< 150 mg/dl FOR FASTING
< 175 mg/dl FOR NON-FASTING
(BASED ON LITERATURE)

HDL Cholesterol                                            55 mg/dL     40 to 100 mg/dL     

HDL REFERENCE RANGES

Low: <40 mg/dL
Normal: 40-60 mg/dL
Desirable: >60 mg/dL

LDL Cholesterol Calculation                    88 mg/dL      0 to 99 mg/dL                

Non HDL Cholesterol Calculation       97.0 mg/dL   0.0 to 129.0 mg/dL

 

TSH

Component                                            Your Value          Standard Range                                                    Flag

TSH                                                                 0.798 uIU/mL      0.270 to 4.200 uIU/mL

 

COMPREHENSIVE METABOLIC PANEL

 

Component                                           Your Value           Standard Range                                                  Flag

Sodium                                                               140 mEq/L          133 to 145 mEq/L

Potassium                                                          4.6 mEq/L           3.3 to 5.3 mEq/L       

Chloride                                                             105 mEq/L            96 to 108 mEq/L        

Carbon Dioxide                                                  26 mEq/L              21 to 30 mEq/L             

Anion Gap                                                               9 mEq/L                 7 to 16 mEq/L                  

Blood Urea Nitrogen                                        20 mg/dL                 6 to 19 mg/dL                                         H

Creatinine                                               0.68 mg/dL         0.50 to 1.30 mg/dL

BUN Creatinine Ratio                                                29.4                                                                                        

Glucose                                                               116 mg/dL                70 to 99 mg/dL                                        H

Protein                                                                     6.7 g/dL                  5.9 to 8.4 g/dL                

Albumin                                                                  5.0 g/dL                   3.2 to 5.2 g/dL               

Globulin                                                                   1.7 g/dL                        2.0 to 3.5 g/dL                                      L

Albumin/Globulin Ratio 2.9                                                                                           

Bilirubin                                                             0.4 mg/dL                   0.0 to 1.0 mg/dL        

Calcium                                                             9.7 mg/dL                  8.6 to 10.0 mg/dL    

Alkaline Phosphatase                                      112 U/L                         39 to 117 U/L                     

AST                                                                             17 U/L                            0 to 37 U/L                            

ALT                                                                                9 U/L                            0 to 40 U/L                              

EGFR (MDRD)                                                            >60                                 >60                                                      

-- eGFR UNITS OF MEASURE --
mL/min/1.73m(2)

Comment EGFR                 SEE BELOW                                                                                       

This test has multiple limitations.

 

HEMOGLOBIN A1C – Details

 

Component                                               Your Value                      Standard Range                                  Flag

Hemoglobin A1C                                                   5.5 %                            4.5 to 5.7 %                    

Falsely low percent A1c may be seen with abnormal hemoglobin variants or
shortened erythrocyte survival (such as hemolysis, blood loss and
pregnancy).

Average Plasma Glucose                            111 mg/dL                       82 to 117 mg/dL

 

CBC W/O DIFFERENTIAL

Component                                                  Your Value       Standard Range                                           Flag

Leukocytes                                                             6.1 thou/uL      4.2 to 9.9 thou/uL  

Erythrocytes                                                            5.13 mil/uL     4.08 to 5.74 mil/uL

Hemoglobin                                                                  15.1 g/dL     13.0 to 17.4 g/dLL         

Hematocrit                                                                      44.3 %        38.0 to 50.0 %                  

Mean Corpuscular Volume                                      86.4 fL         82.0 to 100.0 fL              

Mean Corpuscular Hemoglobin                           29.4 pg          27.0 to 34.0 pg                

Mean Corpuscular Hemoglobin Conc             34.1 g/dL      32.0 to 36.0 g/dL        

Platelet Count                                                       242 thou/uL   140 to 440 thou/uL

Mean Platelet Volume                                                 10.0 fL        8.6 to 12.7 fL                    

Erythrocyte Distribution Width SD                       38.5 fL       37.0 to 48.0 fL                 

Erythrocyte Distribution Width CV                         12.1 %        12.0 to 14.6 %                  

 

 

[OldDodgy]

@FeralCatman

 

Wow. 
That is such a win. 
The haematocrit is ok so you were not very dry. Nevertheless I agree with @Frogie that it’s worth food fasting overnight and drinking plenty next time. 
Then even the urea will be fine- though it’s safe anyway. 
The Egfr is really encouraging. 
with all you’ve been through I am so pleased for you. Your Hdl is super too!!

 

Just keep up the good work. 
Thyroid levels are contentious so I think go with your Endo chap. 
 

Your pancreas will not have been pleased with quetiapine one jot so congratulations on stopping ! 
Hope you avoid any meds which increase sugars fats or weight. 
 

Very best wishes 

 

OD
 

[Frogie]

@FeralCatman

 

Your bloodwork looks very good. I wouldn't worry about anything at all.

[FeralCatman]

@OldDodgy Thank you for the input. The only thing that makes me nervous is the thyroid numbers changing so fast due to past experiences. Don't want to go through that again. My thyroid seems to be very twitchy and can undergo massive shifts in very short amounts of time. No on has ever been able to provide an answer to that. I will have an answer from my PCP on Tuesday WRT that. He manages just about everything now since I really trust him. If I had listened to the endocrinologist I'd be really sick right now and these last few months would have been much worse. She refuses to take medication side effects into account in any way and doesn't listen. My PCP does. That's why he is the medical king in my life and heads my treatment team. He always gets the last word.

[rmce72a]

Hello FeralCatman.  I have read all the wonderful information you have posted and send me good wishes for your recovery. We really are in hell, aren't we? 

 

I started my Effexor XR 75 taper 6 weeks ago after taking it for 22 years. I am going very, very slowly and am only down to 72.8, but I would rather go slowly that suffer unnecessarily. My question to you is specifically about antihistamines. Your discussion about histamine was interesting, but I'm not sure I understood it all. The bottom line for me is that I have year-round allergies and have taken Clarinex for nearly 30 years. Would it be wise to stop taking it while I am withdrawing? This is a question I'm sure my PCP could not answer since he knows very little about AD withdrawal. (Advised me to cut dose in half for 2 weeks, then stop. Said I should be fine! What most don't know about AD withdrawal is appalling) Anyway, what do you think? You have done so much research that I am interested in your response.  Thank you and take care.

[OldDodgy]

@FeralCatman

Yes you must go with a good doc on these issues. I would not fret too much just let your doc know if you get symptoms of an overactive thyroid. 
Things will settle as your whole body recovers !! 
OD 

[rmce72a]

Does this mean I am ok taking Clarinex?

[FeralCatman]

@rmce72ai

If you have been taking it that long I would recommend that you continue it at least until you are through withdrawal.

 

Here is the reason why.

 

Taking antihistamines for a long period of time can result in a deficiency in diamine oxidase which is an enzyme that is necessary to process histamine in your food. I actually just had a blood test drawn to check these levels. Unfortunately this test is not available in the United States so I had to go through an Australian company whose lab is in Germany and I had to FedEx the sample to Germany myself. I am still waiting for the results. While you're on the antihistamines you're getting protection from reactions like food sensitivities. If you suddenly stop taking it and you are deficient in diamine oxidase it is possible you will develop symptoms of histamine intolerance. If I remember from my reading correctly, antidepressants are another class of drug that can cause a diamine oxidase deficiency. So stopping one drug while tapering the other could be a double whammy even though the antihistamine is not a psychiatric med it is still a very powerful medication. This is of course a theory and based on my own reading but I have found a lot of information that shows that this could happen and it is actually what the current theory is regarding what happened to me when I tried to stop the Allegra. There are also people who have reported that stopping their antihistamine while tapering or in withdrawal for some reason ended up with psychosis bizarrely enough. This also happened to me but I don't know why it happened. The best thing to do is to continue tapering the Effexor and get off of it before you do anything with the antihistamine. From personal experience I would also recommend tapering the antihistamine and not stopping it cold turkey if you ever decide you don't want to take it anymore.

[FeralCatman]

@rmce72aThere are others on this web site who have withdrawn from other medications who developed hypersensitivities and food intolerance's that may be related to the same thing. I honestly don't know for sure and it doesn't seem that anyone really knows for sure why this happens. This is my best educated guess. I have learned the hard way that it is always best to just do one thing at a time when in withdrawal and that includes mucking about with non psychiatric medications including supplements while you are mucking about with psychiatric medications. The combined effects of doing both at the same time are pretty unpredictable it seems so best to only multitask if necessary to protect life and health.

[FeralCatman]

My psych provider is a psychiatric nurse practitioner and is also a teacher at a school that has a nurse practitioner program. Most semesters she has students working with her. Since it is the Department of Veterans Affairs there are also med students who do rotations there as well. Recently, some of the residents gave a presentation on Tardive Dyskinesia. They emphasized the risks of anti-psychotics and stated that the anti-psychotic medications should be used with extreme care and discretion and if possible should be avoided. The good news here is that these are students who are not yet practicing in their field yet but will soon be entering the system. They are starting their careers with a more realistic view of their treatments and the harm that they can cause. I recommended to her that she have her students spend some time reading symptoms and self care on Surviving Antidepressants to learn what people are going through trying to get off of psychiatric medications. She thought it was a good idea and is going to incorporate that into her teachings. CHANGE IS COMING 😉✌️😺😺😺😺