For Today

Bob is still suffering with the depression and anxiety. He experiences days of intense anxiety and other days when he just gets through the day. My heart breaks for him. When I first started this blog site I had no idea of the length of time he would be dealing with these terrible symptoms. Yesterday Bob had blood drawn for a large panel of tests. At least we will have things to eliminate and who knows, maybe there is something else going on. Sometimes before Bob wakes up, he experiences a head to toe 4 second shake. Then he wakes up. What is that? It reminds me so much of what he went through in Sept. 2011(see previous posts).

Time Passes

Well, here I am realizing that my last post was almost a year ago. Many of you might be wondering how Bob is doing. He is still dealing with the major depression; onset April 2011. We are 100% sure that the toxic reaction to the drug he was on in Sept of 2011 and how long it took the doctors to recognize the symptoms were not due to anxiety but the drug, caused this long term condition. Some times I just sit in disbelief that drugs were prescribed that caused him so much anguish. Today he is experiencing withdrawal symptoms from the clonazepam that was prescribed at too high a dose for too long. Do I want to blame someone? I have handed that over to the LORD and pray I will not grab hold of that judgement again. You can look back at past posts to see how high of a dose the docs had him on - crazy high. It is a long process but he is currently down to .25 in the morning and .50 at bedtime. I am so proud of him. I can see the physical and mental anguish he experiences from cutting the dosage. Please beware when any BENZO drug is prescribed. Long term use(anything over a few weeks)will cause withdrawal symptoms. If done too quickly, can even cause death.

Called to Encourage

As I was getting ready to update Bob's condition, I felt like I was suppose to report on my own. Interesting. My condition. First of all, I never feel alone. The LORD is with me. He brings me peace and He brings me encouragement. I cannot imagine what my condition would be if I did not have Him. Lesson 1: Praise Him Daily; In all situations. Lesson 2: Share the Gospel. Don't let an opportunity go by...even if it is just planting a seed or a spirit filled reminder to someone who has already heard. Lesson 3: Be An Encourager and Love As He Loves Lesson 4: Always Forgive. In His Love - Linda

The Road To Recovery

It has been a few months since I last wrote. My heart just has not been in it. Let me first say that Bob is doing much better. The road to coming off the prescription drug, clonazepam has been a bit bumpy. You cannot just stop taking the med, you must gradually cut the dose. Thank goodness we found a website, www.benzo.org.uk and read the Ashton Manual. It certainly helped both Bob and I to understand just what was happening. I will post more in the next few days.

The Path

For the most part not much has changed with Bob's condition since January. Some days I feel like I see glimmers of Bob and then I am not so sure. January came with his father going into the hospital with pneumonia, then a heart attack, then renal failure. He is much better now and thank goodness because now Bob's mom is in the hospital. She had back surgery and it seems to have been successful. Praise God!
Bob's meds are still the same but with an increase in 1 doseage for the doxepin. He is so fustrated in the progress he is making.

It's A New Year

I have not done a very good job of keeping up with Bob's progress because for the most part we have been doing a lot of one step forwards, two steps back. We have been discouraged and encouraged. On December 13th we ended up at our family doctor because we felt no direction from the specialist. She had told Bob to cut back on the Lorazepam but did not give him any plan to follow. Bob cut the dosage too quickly and ended up worse. Fustrating.

After a trip to the ER and with our family doctors guidance, blood work and a brain scan was done along with seeing a neurologist. All checked out o.k. Thankful for that news.

We have decided to only work with our family doctor at this point because we trust him and we know that he will be there for Bob every step of the way. Our doctor has put him back on Clonazepam, which he has taken in the past for his nerve condition and also doxepin.
The meds appear to be making a difference with the shaking. Now Bob and I need to work on filling his mind with truth. He has struggled with this for so long that he is stuck in a pattern that needs to be broken. I know that for myself, I need to fill my mind and heart with God's word....moment by moment.

The Shakes Continue

Here we are coming to the end of November and the shakes still continue in the morning. There have been a couple of mornings with no shakes at all. It is hard to know what the difference is. So fustrating. I honestly don't know if taking the lorazepam makes any difference at all. Looking at what "I see", I keep going back to the original problem when the shakes started, the high dose of prescribed flouxetine. I have read that during the sleep pattern, the brain during the REM cycle experiences low to almost dormant serotonin. Then when it comes out of that cycle, the serotonin starts to "fire up". Is it possible that there has been some type of damage to nerves in the brain, and that depending on how he comes out of that cycle, shaking may or may not occur? Looking for answers. I don't know if there are any truthful answers except, they just don't know what is causing the shaking.
The other thing that Bob is dealing with is pain in his hands and shoulders. The hand/joint pain started at the end of September and one pharmacist that I spoke with told me it was a reaction to the meds. It makes sense, but no one else is making that same statement. Confused.
Bob is trying to work, which is great in many ways. I just know he is exhausted and in pain.
Praying for healing.

Time Passes

Bob had a doctor's appointment on October the 18th and it was decided that he should continue on with the lorazepam but add Zyprexa. He is taking 3mg of lorazepam in the morning, along with 2.5ml zyprexa and 3mg lorazepam at bedtime with 5ml zyprexa. He is also to take 1mg lorazepam in the afternoon. After 2 weeks of that regiment, we had an appointment on Thursday, November 3rd and he is to continue for another 3 weeks. Though the shaking is confined to the morning - as soon as he gets awake, it is normally gone within an hour or so. It is NOTHING like it was, but is still causing him distress. Why is it happening? The doctor still says it is anxiety but honestly, I can't help but think there is something else going on. The long term affects of the toxic dose of prozac(fluoxetine) and the number of hour and hours of shaking/jolting that Bob endured has to have taken a toll on his nervous system.

In the Morning

I use to love the mornings. There was always such hope with the dawn of a brand new day. I know that the hope is still there, somewhere but it is hard to see when the day starts with shakes and jolts. It appears there is a real pattern here. For the past few days, around 5:00am Bob wakes up, goes to the bathroom and when he comes back to bed, the shakes begin.

We need to know without a doubt that this is still part of the serotonin syndrome. September 18th was the first day of no fluoxetine. We are going into the 1st full month of not taking the drug that caused the problem. Trying to find some real information on how long this can continue has been exhausting.

Bob is only taking larazepam and cyproheptadine.

More of the Same

Since my last post, Bob has experienced more of the same. Morning tremors and shakes. Nothing like it had been, but still fustrating for him. We have to look beyond what we are seeing on the surface and try to understand what is happening deep within. The fluoxetine chemical components breakdown in stages. It's affects are not localized to just one area of the body. My sister-in-law was able to explain it to me with chemistry largo. It is important to keep in mind, that we are talking about when the drug becomes toxic; serotonin syndrome. Fluoxetine(and drugs like it) are used successfully to treat depression and related symptoms. What happened to my husband is not the norm, but it does happen. And when it happens to you or someone you love, it is frightening. The question always looms, when will this end?

Holding On To Half Way There

Bob was able to work about 4 hours yesterday morning. I find that simply amazing compared to how he was Monday morning. Taking the cyproheptadine makes a huge difference in controlling the affects of the syndrome. At this point, Bob seems to be just pushing through the depression. I asked him yesterday, on a scale of 1 to 10, 10 being the best possible, how do you feel overall? He thought a bit and answered maybe a 5. Not sure he really meant it, but I said, well you are half way there!! Progress is good.

Reality Check

First of all, I want to express how thankful I am to see that Bob is making progress. When I look back over the past month or so, it is obvious that he is getting better. It is still very difficult though. Even though he pushed his way to work about 4 hours Monday,Tuesday,Wednesday and Friday, Bob was feeling weak and shaky.

Saturday and Sunday mornings both brought shaking and jolting, giving him an overall feeling of oh now, it's coming back. Yesterday morning Bob shook from head to feet. It was short lived but scary. His whole body shook and his arms and legs jerked and flopped - he had no control over them.

Even though I was pretty certain that was to be expected, I wanted to be sure we were not overlooking something. I called our family doctor and we decided that Bob needed to go into the office. We reviewed EVERYTHING. We are confident that yes, it is Serotonin Syndrome and it will take weeks before all of the symptoms stop. (Actually, I had read months but I'm holding onto weeks)

Our doctor gave Bob a neurological examination. All looked well. For now we are going to start up the cyproheptadine(allergy med that blocks serotinin) 4mg tablets. 1 tablet 3 times a day. He suggested taking one in the morning, one later in the day, and one closer to bedtime. He is to continue on with the Lorazepam, 2mg tablets - one in the morning and one at bedtme. Also, 2, 1mg tablets spaced during the day as needed.

Bob weaned himself off of the Zyprexa over the weekend. Our doctor agreed that was a wise decision at this point. I am praying that the depressed state will lift on it's own.

Reality check. Things take time. Never lose hope. Our God is greater. Our God is stronger. He is the One and Only. The great I AM.

On The Road To Normal

Normal. What is that really? Not even sure it exists or if it does, we are always on the road to "it". Today the road had a work sign on it!!


BOB WORKED FOR 4 HOURS TODAY!!!! THANK YOU, LORD!!

The serotonin symptoms are still there but very mild. He is doing so much better. Will update more later. Enjoy the day!

One Week Later

Even though yesterday morning and afternoon were a bit rough for Bob, there is definite improvement. The syndrome symptoms are not as "forceful" and are not as frequent. When they do appear, they do not last long. Our doctor told Bob to only take the allergy med when needed. He took it again this morning. Looking back over the week, Bob took the med from last Sunday until Thursday morning. He did not need at all on Friday and then yesterday morning and this morning. I believe that is good progress.
My hope is to get Bob out of the house today for a bit. I would like to go to church but I know that might be a bit too much for Bob yet. We do need to get him around people more...it's been a long 6 months.

A Simple Treatment for A Horrific Syndrome

Sunday morning Bob work up with more shaking,jolting,muscles constricting and this time I saw that his eyes were dialated! He also told me his thoughts felt jumbled. I called our family doctor and he returned the call within minutes. After hearing it all, he said stop the fluoxetine. He then called in a prescription for cyproheptadine, an allergy med that blocks serotonin.
Within an hour we had the drug and Bob's shaking stopped a few minutes later. By the end of Sunday, Bob was back. He looked better and I could tell he was feeling better. He took the cyproheptadine for 4 days, 3 times a day. He has had a couple of mini shaking episodes but they lasted only a few minutes. Today is Saturday the 27th and this morning was a bit rough but nothing like before. He simply took one of the allergy tablets and calmness came. Our doctor said that it might take a few weeks to clear his system.
We had an appointment with the psychiatrist yesterday(Friday) and she apologized for Bob going through all that he did. In her defense, she never saw his shakes,jolts,muscles constricting or any other signs of the syndrome.
She is a good doctor and we plan on working with her during the next stage. Bob is now only taking 5mg of Zyprexa and 2mgs of lorazapam in the morning and 2mgs at night. She also said to take 1mg if needed during the day. Her plan is to add lamictol once the shaking has gone completely - which she too said could take weeks.
I am very thankful and praise God for Dr. Spencer the ER DOC. Also, our family doctor, Ambrose Peterman is in my opinion one of the best doctors available to us. He goes above and beyond and we know we can always count on him.

September 15th ER visit

After reading all about serotonin syndrome at www.mayoclinic.com the night before, I did not waste any time getting Bob to the ER. This time I was ready. They decided to do more blood work and a thyroid test. We waited. They had given Bob a shot, so now he was calm. But I was not. Serotonin syndrome was all I could think about. The only way to get better was to stop taking the fluoxetine.
Thursday was a long day and Bob wanted to keep on the prescribed drugs because he wanted to get better....the relief from the shot of adivan did not last long. By midnight, he was shaking. It was a very, very long night. What was I to do. Do I take him to the ER again? Poor Bob suffered all night long with his "anxiety"...it was so bad by 5am that I called 911. Why? I was exhausted and just did not know what to do and Bob asked me to. When the EMTs got here, they were so nice. They did not administer any drug but suggested that he take 2 more lorazapam. They stayed with us for a bit until Bob got calm. The calmness did not last long.
I called our family doctor and the psychiatrist. After talking with our family doctor, I really felt he too thought serotonin syndrome but he wanted to talk with the psychiatrist. We had an appointment with her at 2:30pm and again, she said it was not serotonin syndrome. She did give us a prescription for 20mg(remember Bob had been taking 80mg a day) of fluoxetine.
I called my employer who is a chiropractor and asked him for some advice. He gave me his thoughts and called his friend who is a pharmacist. The first thing he said when he heard the symptoms, serotonin syndrome. I ended up talking with him for a bit and he convinced me to get on board with what the psychiatrist was saying but to watch him closely. So I did.

September 14th another trip to the ER

After trying all we had, lorazapam, encouragement talking, deep breathing, we had to make another trip to the ER. The ER doc, Dr. Spencer, asked a couple of questions, saw the meds he was taking and said, it looks like serotonin syndrome. WHAT? What is that? He explained that too much serotonin can cause the symptoms we were seeing. A name, this thing has a name! And Bob was right, he could not control it!! They gave him a 2mg of adivan and the shaking stopped. Blood work was done at the previous visit and this time they did a few other tests.
Bob's psychiatrist was in the hospital and after she had a look at him stated, it is not serotonin syndrome. What?? No, I'm sorry, this now has a name and I'm sticking with it! But I listened. She encouraged Bob to stay positive and keep taking the prescribed meds. Home we went.

Deep Breathe

Over the next few days I attempted to be Bob's coach to work through the anxiety. Thinking techniques, to baths, to deep breaths. They did seem to have some benefit but not long lasting. What was going on? Things just didn't seem right.
The shaking,jolting,constricting muscles seemed to be lasting longer and longer. Hours.

September 8th ER Recap

Bob was in great duress. He felt as though it was not anxiety but since that was what the medical community called it, so did he. The staff at the hospital was great and within minutes of receiving a 2mg shot of adivan, he was calm. They made an appointment for him to see a psychiatrist that evening.
The psychiatrist was in agreement with the meds he was taking but did decide to switch up how the fluoxitine was taken. He was to take both in the morning. 80 mg before noon. By the way, that is normally the highest dose given. She added pamelor.
We were exhausted.

Rewind to Saturday, August 27th

Let me just say this before I start, I'm trying desparately to catch up with myself. The past few weeks have been so full of emotion. Bob went through a few weeks of complete mental and physical anguish. On Saturday August 27th Bob awoke not feeling quite right. He had been seeing progress with the depression and Saturday was a bit of a set back. First of all, our dear son-in-law was here with us for a couple of days and Hurricane Irene was gearing up to give a wind and rain.
Saturday though was our PA grandson's 4th birthday and we were going to his party. But about an hour before we were suppose to go, Bob started to shake uncontrollably. I called our family doctor and we discussed what the problem could be. After all my finger pointing to meds, we thought it was probably just an anxiety attack. When I asked Bob if he was anxious about going to the party, he responded, why would I be anxious about that? Our doctor had called in a prescription for lorazapam, the generic of adivan. Waiting for the the prescription to get filled was horrible....I kept thinking about my 4 year old's request that I come to his party early, and how I said, you bet buddy! There I was, standing in CVS with his party to start in 15 minutes. At that moment, I think I started to HATE the disease that was consuming my husband. I wasn't torn with my obligation, I was just sad. But I had to dig deep, say a prayer and believe that my God would not leave me alone with this.
I called my son to let him know what was happening. My son-in-law offered to stay home with Bob so I could at least spend some time at the birthday party. As heart wrenching as it was to leave Bob for a few hours, I thought, when I return he will be better.
The next few days proved to be full of more shaking but on September the 5th things seemed to turn around. Bob was great on the 6th and 7th and was starting to feel as though he could go to work on Thursday the 8th. On the 8th he woke up with muscles constricting, shakes, jolts and just feeling terrible. The lorazapam was no longer working. Somewhere in the midst of all this, the fluoxetine was increased to 40mg twice a day. I remember sitting straight up in bed on night thinking, that is a lot of fluoxetine!

On the 8th we ended up in the ER.