Introduction from Patience

[Patience]

Hi everyone. I am almost 40 months post taper (12 week taper, 19 years of use). I was on PP for a little while but was invited to come here. Here's my info:

 

MY HISTORY

While trying to figure out why I'd felt so awful from being on too much thyroid medication for years, I went to a doctor who gave me the speil about SSRI's being necessary (like a diabetic needs insulin) to "cure" my disease called depression, I only had to take them for 6 months to be cured forever, and that they're absolutely safe, non-addictive, and that they've been around for years but the formula has changed only slightly (Prozac). He didn't bother checking my thyroid levels. This was early 1989, so there was no easily obtained information about SSRIs other than the marketing hype from my doctor, so I reluctantly agreed to try it. After numerous failed attempts to quit and being told by other doctors that I must not be cured yet and look how bad my depression would have gotten if that good doctor hadn't diagnosed me, etc., I spent 12 years on Prozac until it pooped out, 2 years on Paxil (attempting to quit that led to my divorce), and the remainder on Celexa. All told I spent 19 years addicted to SSRIs.

 

 

RESIDUAL SYMPTOMS

• I have a lot of okay days, but no great days. I do a lot of pretending.
• I don't really feel like myself.
• I get anxiety from traveling, crowds, elevators, and basically any place I can't get out of quickly (agoraphobia).
• I feel like I'm going to pass out often (luckily I never have).
• My breathing is often short and shallow, which causes anxiety.
• I get mildly depressed occasionally (this is also much improved).
• I have to really take it easy with exercise.
• My hair falls out a lot
• I'm unable to take supplements (even Vitamin C gives me anxiety)
• I'm tired much of the time and need to rest often
• I get dizzy easily
• I get short of breath often (though I do light exercise regularly)
• Eyes are puffy/swollen most of the time
• I've become a very light sleeper
• I have only vague memories of the years on SSRIs (compared to much clearer ones prior to using them). I don't think I'll ever get those memories back, which is a shame because that's 13 years of my daughter's life.
• I get bloated a lot
• There are probably others that I try to ignore and hope they'll go away someday

IMPROVEMENTS

• Involuntary movements have lessened (my left arm would shove into my side)
• Depression (not as bad and not as often)
• Anxiety (still very much there, but there has been some improvement)
• Ability to concentrate (I'm able to focus at my job now)
• Mood swings not as bad or as often
• More interested in life
• Able to go places alone (more confidence)
• Able to get my mind back to a rational state most of the time

 

WHAT I'VE BEEN DOING TO AID HEALING

• I've adjusted my thyroid medication numerous times in the last three years, tried different thyroid medications, but have been on a stable dose (my levels are all good) for six months.
• I've been on the Specific Carbohydrate Diet (grain-free whole foods diet) for almost three years.
• I haven't had any caffeine (not even chocolate) in just under three years.
• I exercise regularly (easy walking and T-Tapp).
• I practice yoga and breathing exercises when I feel anxious
• I get at least eight hours of sleep a night (except when I have insomnia)
• Cognitive Behavioral Therapy

Edited May 31, 2011 by surviving
added poster's name to Intro topic heading

[compsports]

Welcome Patience.

 

I mean no disrespect but your doctor still should be condemned for giving you Prozac when your thyroid issues were the problem. It has nothing to do with the fact that there wasn't information on SSRIS.

 

He didn't want to take the time to figure out what was going on so Prozac was the shut up pill.

 

Wow, a 12 week taper after being on meds for 19 years. Way to go docs. Yes, I am being sarcastic. Not at you of course.

 

Since you have had some improvements, hopefully your residual symptoms will eventually alleviate.

 

Glad to have you aboard.

 

Comp Sports

[angie007]

Hi Patience and welcome, good to have you here,

 

Im sorry to see the problems you are having, so un fair really especially when all we have taken is some legal prescription non addictive drug.

yeah right, pity we werent all as wise then, as we are now.

Im a long term user too, although my taper was 56 months and not 3, i really pray for us all, that some day all of this will be gone, and we

can be normal and live a normal life again.

Thankyou for being here and writing your story, although it made me cry, im so glad that i read it.

I wish you health and healing my friend.

[stan]

hi Patience,

 

thanks for your history

i wish you to improve more

[Neuroplastic]

Hey, Patience! Welcome to SA. Your taper was extremely fast, after 19 years on SSRIs it was basically c/t. All the symptoms you're describing are so typical of WD. The very good news is that the improvements are there. It augurs very well for the future. You will be steadily improving. You also do all you can to speed up the process of recovery, and all in reasonable limits. Keep us posted about your progress, and, above all, stay focused the way it's now. You will heal!

[Patience]

Welcome Patience.

 

Wow, a 12 week taper after being on meds for 19 years. Way to go docs.

 

I was laughed at by doctors for suggesting that I do anything more than a one week taper. I had been told over and over by doctors that the drugs are not addictive so whatever I experienced while withdrawing would only be a return of my "depression." The doctors mostly discouraged me from stopping the meds. Surprisingly, my gynecologist was impressed when I told him I got off the drugs after 19 years. When I told him that no doctor could ever tell me how to get off the drugs, he remarked that it's because they don't know how. They can prescribe them but they can't tell you how to get off them. Thankfully doctors are more informed these days and the drug inserts now say to never cold turkey off the drugs. I probably did some damage to my brain all those times I tried to c/t - probably something like 8 or 9 times.

 

I've read about people who c/t and are fine after a year. I've also read about people who do a slow taper and take a long time to heal. My sister c/t off Prozac, Celexa, and Effexor. I'm off the drugs and I'm healing (though VERY slowly), so that is what's important to me.

[Patience]

Keep us posted about your progress, and, above all, stay focused the way it's now. You will heal!

 

Thank you for the encouragement.

[angie007]

Hi patience,

 

You are so right, these darn doctors, if they are going to prescribe this poison,

they owe it to their patients to be informed as to how to safely take their patients

off, its absolutely criminal the suffering we have to endure because of there ignorence,

oh and of course the drug companys, but i wont get started on that subject right now lol.

 

I wish you more and more healing buddy.

[Altostrata]

....he remarked that it's because they don't know how. They can prescribe them but they can't tell you how to get off them....

Truer words were never spoken. That is one smart doc.

 

....I've read about people who c/t and are fine after a year. I've also read about people who do a slow taper and take a long time to heal....

It's true, some have no problems and some have lots of problems. You don't know which group you're in when you decide to quit -- tapering is somewhat of an insurance policy.

 

So glad you're doing a bit better. Keep us posted about how you're doing.

[Nadia]

Hi Patience,

 

I'm starting on the Specific Carbohydrate Diet/GAPS diet now as well. I found it years ago for my niece, who has Ulcerative Colitis, but thought since it's a healing diet it would not hurt for me to try now. Do you feel it made a big difference for you?

[Patience]

 

I'm starting on the Specific Carbohydrate Diet/GAPS diet now as well. I found it years ago for my niece, who has Ulcerative Colitis, but thought since it's a healing diet it would not hurt for me to try now. Do you feel it made a big difference for you?

 

That's great you're starting SCD/GAPS. It's a very healthy and well balanced diet as far as nutrients go. When I started it, I lost 18 pounds, my skin took on a very healthy glow, miscellaneous bumps I'd get on my arms cleared up, cystic acne cleared up, I felt better overall, and I had to significantly reduce my thyroid medication after two weeks (due to better absorption). I've tried to go off the diet and just steer clear of gluten and lactose, but I just don't feel well when I do. There were numerous reasons why I started the diet, but a big one was I wanted to be sure to give my brain/body all the nutrients it needs to heal from having taken antidepressants for so long. My husband, who has ulcerative colitis, is also on the diet and it's been very healing for him. He's dropped one of his meds and is slowly lowering the dose on another one. So staying on the diet makes sense for me for many reasons. I've been on it almost three years (two years for my husband).

 

But on the not-so-positive side, I have gained back those 18 pounds since I've found much more to eat.

My skin has stayed mostly clear. I've gotten a single cystic acne pimple maybe two or three times since then.

I've become extremely sensitive to gluten. If I get so much as a crumb, my gut is in pain for three days and I feel yucky overall. The same with lactose: if I ingest more than say 1/2 cup of milk one time, my gut is in pain for four days. Though I never got an official diagnosis via a blood test or biopsy, both of my doctors agree that I have Celiac disease.

 

It's a tough diet to stay on if you want to socialize. It takes planning. Chocolate is the hardest thing to give up (is it allowed on GAPS?), but I gave it up even before the I went on the diet to give my adrenals a rest.

 

Your experience with it will probably be different than mine as far as gluten sensitivity goes, and from what I've read, most people feel so much better overall on the diet. If you want recommendations for websites with good recipes or cookbooks or Internet groups for support on the diet, just ask and I'll tell you what I know.

[ajay]

Hi Patience,

 

Would you be willing to start a thread on SCD/GAPS diet in the "symptoms and what helps" section? I'm curious about this.

[Patience]

Hi Patience,

 

Would you be willing to start a thread on SCD/GAPS diet in the "symptoms and what helps" section? I'm curious about this.

 

 

I posted it at http://survivingantidepressants.org/index.php?/topic/890-scdgapspaleo-diets/

[ecsaow]

Hi Patience,

I like the name, its probably one of the most

important virtues we have to master to survive our ordeal. Sounds like you have a great

deal of it (patience) to get through 2 decades of SSRI abuse. Have you noticed improvements over the 40 months of being off the meds, from the 1st month to the 40th month ? If you had to put a percentage value from the first few months to your 40th month drug free, how much would you say you've improved?

 

Keep it up, your an inspiration

[Patience]

Have you noticed improvements over the 40 months of being off the meds, from the 1st month to the 40th month ? If you had to put a percentage value from the first few months to your 40th month drug free, how much would you say you've improved?

 

Hi ecsaow,

 

Yes, I have definitely noticed improvements over the 41 months off the drugs. I've been feeling very well for a few months now. I remember that first year. I thought of traveling and thought there's no way in hell I could go anywhere. Just riding in a car was very trying. But, I've recently come back from a trip to Canada which involved four plane rides (two in small puddle jumper type of planes). I was nervous, yes, but nothing like I was even a year ago. I was able to comfort myself by listening to my iPod and reading a magazine. I couldn't have done that three years ago.

 

Low libido was an issue I thought was permanent, but that's showing improvement, too, as of this previous May. I'm also much more able to focus at work. I can stay up late without dire consequences the next day. I'm able to handle some light mysteries on television (whereas before, I couldn't handle anything remotely violent, so I avoided TV, which is probably a good thing!). I'm reluctant to put a percentage value on my improvements because withdrawal comes in waves. I've been having a good long run so far, but I fear another wave might be just around the corner. With each wave, there is greater improvement. That's important to remember when you're in one.

 

Go easy on yourself and you'll get there too.

[Altostrata]

So happy to hear you're feeling well, P!

[ecsaow]

Hi ecsaow,

 

Yes, I have definitely noticed improvements over the 41 months off the drugs. I've been feeling very well for a few months now. I remember that first year. I thought of traveling and thought there's no way in hell I could go anywhere. Just riding in a car was very trying. But, I've recently come back from a trip to Canada which involved four plane rides (two in small puddle jumper type of planes). I was nervous, yes, but nothing like I was even a year ago. I was able to comfort myself by listening to my iPod and reading a magazine. I couldn't have done that three years ago.

 

Low libido was an issue I thought was permanent, but that's showing improvement, too, as of this previous May. I'm also much more able to focus at work. I can stay up late without dire consequences the next day. I'm able to handle some light mysteries on television (whereas before, I couldn't handle anything remotely violent, so I avoided TV, which is probably a good thing!). I'm reluctant to put a percentage value on my improvements because withdrawal comes in waves. I've been having a good long run so far, but I fear another wave might be just around the corner. With each wave, there is greater improvement. That's important to remember when you're in one.

 

Go easy on yourself and you'll get there too.

 

Hi Patience,

That's really good to hear, as long as things are improving thats the main thing, no matter how long complete/full recovery takes.

[lupe]

I'm glad to read that I am not the only one who cannot tolerate violence on TV.I cannot watch news or any of the murder mystery stuff that is so popular on TV. I have to be careful of conversations and what I read also. I am also glad to read that it really does improve with time even though when you are in a down period it seems hopeless. Thanks for your posts.

[Altostrata]

See this topic Movies that won't frazzle your nervous system

[lupe]

Thanks Alto

I guess the CNS is reacting the same to these types of stimuli for many of us! I need to check out more of the topics section.

[Nadia]

Hi Patience, I too am very limited in what I can and can't watch. It doesn't seem to have to do just with violence... since everything is exaggerated and stays with me too long, I can't seem to watch any TV at all. My boyfriend thought I might be cheered by watching a comedy of an annoyingly cute couple, and I just couldn't stand it, I had to stop watching it half way through. I was going to try Seinfeld, hopefully that is neutral enough.

 

The same thing happens with music...

 

Alto, thanks for the list of movies, I will see if something there helps!

[Altostrata]

It may be your nervous system is just too sensitive to the light, movement, and sound right now. Take it easy -- this does get better.

[Patience]

It's been 3 years and 9 months since I quit SSRIs. And it's been 9 weeks since I quit thyroid medication. I know there are going to be people reading this thinking I should never stop taking thyroid medication because I obviously NEED it. But that's what they told me about SSRIs, too and I stayed on them for that reason (and because I was addicted to them). But the key thing is to compare how you were before taking the medication to how you get when you stop taking it. I was fine before being put on thyroid medication at age 12. I was short and skinny, but normal. Fine. The thyroid medication turned me into a moody, hot-tempered, nervous, exhausted, impatient, withdrawn kid. My resting pulse was 96. The doctor and my parents told me that I had to take the thyroid medication or else I'd get VERY SICK.

 

When I told my mother how nervous I was on the school bus, she told me to file my nails to distract myself. When I told my doctor how nervous I was, he wrote me out a prescription for Xanax (I was 15 by then), after the standard visit which involved him sticking his finger up my rear to "feel my ovaries." I didn't take the Xanax (thanks to a warning from my father), but I was a good patient and took those stupid thyroid pills for 33 years. After 9 years on Armour, I switched by Synthroid. The transition was really tough. I had to drop out of school since my mind was so foggy. I took on an easy office job and got health insurance. I was determined to figure out my thyroid problems once and for all. That's when I encountered that incompetent doctor who put me on Prozac.

 

I believe the Prozac "worked" for me because it likely interfered with absorption of the thyroid medication (I always took the two drugs at the same time) and probably also suppressed my normal thyroid output. Whenever I tried to get off Prozac/Paxil/Celexa, I became even more hyper-thyroid. The nervousness I felt after a week or so being off SSRIs was unbearable.

 

I don't expect my thyroid to return to normal, being 9 weeks off, after 33 years of being suppressed. But I'm hopeful that it might someday. I had my levels checked last week and my TSH is slightly high (7 on the scale of 0.1 to 5.5). My T4 and T3 are both within the normal range, but at the low ends.

 

I feel better in many ways. The thought of riding in an elevator no longer freaks me out (though I have yet to test this). I'm not as angry and reactive and impatient as I used to be. My hair isn't falling out as much as it used to. I've had brain fog and depression about three times, but nothing major. (I would occasionally get brain fog and depression while on thyroid medication, despite having "normal" levels, so nothing new there). I have a little *more* energy than before. My skin is fine (except I am getting hives all over and have eczema on my foot, which might be a casein allergy). Overall, I'm not noticing much difference between being on thyroid medication and not being on it. I'm hoping to dispel that myth that if you've taken the synthetic T4 for more than ten years, you can never get off it. I suspect that may be another lie from the pharmaceutical companies to keep people taking the drugs.

 

This whole thing has been one long-ass nightmare that I really wish I could wake up from.

[Barbarannamated]

You are the 2nd person mentioning hair loss today

[Barbarannamated]

You are the 2nd person mentioning hair loss today

 

Sorry, I'm having technical difficulties and computer locking up.

 

Patience,

 

Your points about thyroid are very interesting. I'm sorry I don't have the citation, but I read a journal article recently about thyroid supplementation causing adrenal problems. Is the endocrine system another case of treating an imbalance in one area/gland and causing a far greater imbalance? Granted, endocrinology has methods to measure and 'normal' reference ranges established, unlike psychiatry's Chemical Imbalance urban legend with no reliable testing methods, ergo no possible way to establish normal ranges.

 

I am having a tough time knowing who or what to believe right now. It's painfully apparent that the body can't be sectioned off and treated as independent parts without consequence. Even antibiotics targeted at specific pathogens and used for short course disturbs the 'normal flora'.

 

I believe you are on to something.

[Patience]

 

I read a journal article recently about thyroid supplementation causing adrenal problems. Is the endocrine system another case of treating an imbalance in one area/gland and causing a far greater imbalance?

Yes, thyroid medication stimulates the adrenal glands. My fight-or-flight response has been at the ready and set off over and over for 33 years. I've spent a lot of energy trying to calm myself over the years.

 

The HPA (hypothalamus-pituitary-adrenal) axis is all inter-dependent. In the case of the thyroid, it's the hypothalamus in the brain that recognizes the need for (or excess of) thyroid hormone in the body. It sends TRH (thyrotropin releasing hormone) to the pituitary gland which then produces TSH (thyroid stimulating hormone) to tell the thyroid gland to set up on production or slow it down (by withholding TSH). So yes, the endocrine system is all intertwined. The pituitary is the master gland that tells all other endocrine glands when to produce hormones.

 

Every single cell in the body requires thyroid hormone, so when the system is out of balance, numerous symptoms result (everything from mental problems, digestive issues, immune dysfunction, skin problems, and on and on).

 

Isn't Western medicine such a wonderful thing? <sarcasm>

We're all guinea pigs.