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Before

It started over 12 years ago when I first met my husband. We were introduced to each other by a mutual friend, who later confessed that she knew we were perfect for each other and knew we HAD to meet.

She was right! Among other things, I was looking for someone full of energy, funny, gentle, understanding, kind and loving. I never had so much fun until I spent time with my now husband. I knew before we went on our first date ‘he was the one’. A year and five months after we met, we were standing in his parents living room exchanging vows. I knew my life was going to change, but I didn’t know how.

Life then was so fun and easy. I loved spending time with him. He was so full of life and everything had a bright, funny side to it. I loved laughing. He was always so quick with his humor, loved learning and exploring new things. Life was good. Very good.

About four years after we met, his health started to change. At first, we thought they were panic attacks, but weren’t sure. Doctors didn’t seem to care.

At first, they weren’t often, but over the next few years the ‘episodes’ became more frequent and eventually, he wasn’t able to work in a classroom anymore. He was a teacher. A damn good one too. You know the kind you never forget because their whole soul is in it? That’s the kind he was.

Gradually, as the years went by his episodes got worse, so that they weren’t every now and then, they became weekly, then multiple times a week, then daily, several times a day and now constant.

We’ve been to doctor after doctor and each time we had been written off. Often, we’d hear ‘He needs to see a psychologist’! Then we’d go to a psychologist and get told ‘There’s an organic component here, you need to see a doctor’! The circle seemed endless.

Once when he was so bad he was rushed to E.R., the on-duty doctor yelled at him: “I KNOW YOU DO DRUGS AND UNTIL YOU ADMIT IT, WE CAN’T HELP YOU!” He’s never, ever done any illegal drug. Then there was the other doctor who would refuse to show up to his appointments on time, even when we would get the very first appointment of the day. He knew my husband had bad attacks / episodes and would make him sit and wait 45 minutes, until finally, my husband was so bad he couldn’t wait anymore. This happened so many times that the doctor dropped my husband as a patient. Why? His reason was because my husband didn’t show up for his appointments! My husband showed, it was the damn doctor who repeatedly didn’t! Oh the stories I could tell about how awful most doctors are.

Last January, when my husband hit bottom, he was feeling terrible and having episode after episode. I took him to Urgent Care, not too far from our home. We’d seen the doctors there before and the one that happened to be on duty was especially unfriendly and cold. She was clearly upset that he came in on her shift and was especially snobby. She finally told him he needed to go get a prescription for Klonopin and start taking 3mg / day.

We started him on it immediately. When one looks up Klonopin on the internet, they give a specific example of how you should and shouldn’t start Klonopin because it’s a serious drug. It specifically says one should not start out with high doses, such as 3mg / day. It really does.

He was so bad with it that he literally couldn’t walk, talk, eat, drink or pee my himself. His speech was slurred and all he did was sleep, literally all day. He got himself together enough to call a nurse hotline. When he told her how much he’d been prescribed, she said he needed to go back to the doctor who prescribed it and tell her it’s too much and why.

You can only imagine how unhappy that doctor was when seeing my husband… yet again! I had to get a wheel chair and push him in because the Klonopin made it so he couldn't walk. Using very condescending tones, the doctor immediately went into how they can’t see him for his episodes and he needed to see his G.P.

He tried to explain what was going on with the Klonopin that she prescribed but she wouldn’t let him speak. Finally, in a huff, she snottily looked at him and said: ‘Until you calm down, I won’t speak with you!’ (she was the one yelling). I looked at her and in a very matter-of-fact voice said: ‘YOU prescribed him too much meds and he’s having a reaction to it! We called a nurse hotline and when we told her what YOU prescribed, she told us to get over her A.S.A.P. to get YOU to help us because YOU are the one responsible for this.’ She hastily went out of the room and slammed the door behind her, obviously angry.

After composing herself, she came back a few minutes later. I think she realized she could have a potential law-suit on her hands and she’d better start taking is seriously. We got him on a lower dose where he could start to function, but it changed him. He was no longer fun-loving and funny, at least not nearly like he used to be. He lost some of his mental ability to even do a simple thing like carry a conversation.

Friends who used to ignore me in conversations, now ignored him and talked to me because he couldn’t hold a conversation like he once did. It broke my heart to see this extremely intelligent person be reduced to this.

I went on a hunt to find a ‘good’ doctor and was successful! For the first time EVER, she listened to our story about his health. We went to specialist after specialist and slowly, we began to find some puzzle pieces.

One big find was this year, when we found my husbands heart would randomly start beating at 180 beats a minute! A normal adult heart beats between 60-100 beats per minute. We went in and got his heart ablated - they seared where it was misfiring! Since then we’ve been trying to get him off Klonopin.

It’s been a long, hard, tiring process. His heart is doing better, but he’s still having episodes and we don’t know why or what to do about it. All the specialists we’ve been to shake their heads and say they ‘don’t get it’.

Sometimes, I think I can’t do this, it’s too much to take care of my husband full-time and our two young children (7 & 5 ). Sometimes I dream of what it would be like to not have him be so dependent on me. We’re only in our early 40‘s, so how am I going to do this for another, say 30 years? Sometimes I imagine what it would be like to go on a hike when I want to or take the kids for a picnic or volunteer for the school. But I can’t do any of those things because I never know when he’s going to need me and he needs me more often than not. I cannot begin to tell you how many times he’s called my cell begging me to come home because he’s too scared to be alone. I can’t begin to tell you how many times I’ve cried, all for selfish reasons too.

Some maybe not so selfish when I think of how our children may never know the happy-go-lucky man I met. How patient he once was. How fun he was to be around. He may never make them laugh the way he made me laugh once. They may never know the way he was… Before.
SoInsane SoInsane 41-45, F 3 Responses Dec 8, 2012

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I've been severely mistreated, by a wide variety of the "circus of the medical professsion" as well, I just attributed it to the "lack of decent insurance"....even though "they" cannot admit it to me, legally...the office "nurses" would tell me, discreetly, when I engaged them in a light conversation...lol...certain low budget ins. co-s take a while, to pay up...and sometimes "dispute charges", too...I, personally went through the same "type" crap with drs.... and I no longer have any love or trust for even the best of them!...I feel for all you are going through...especially w/little ones so young...my 2 were already grown by the time I was struck w/illness and complications...Stay strong...Hopefully there will be a break in your husband's healthcare dilemma before long...it can't go on forever...the doctors will start looking "real bad" afterwhile...[with mis-diagnosises]...[[[hugs]]]...jb

Jackblasio-
Thank you sincerely for your support and understanding.

panic attacks are not fun but has a psychologist ever tried anything like i don't know paxil? I mean klonopin is a benzo and it's good for when you're in the middle of an anxiety attack but unless you had very special neurochemistry 3MG is high. Most start off around 1. 1 is enough to feel damn good if your nerves are too tight generally but your husband has already had a terrible reaction from what wasn't really that high of a dose so i'd suggest staying the hell away from klonopin. The idea is NOT to TREAT a panic attack that's already underway but to prevent it from even happening. Paxil did wonders for me when I had social anxiety disorder but the truth is that I have a lot of comorbid conditions and my biochemistry is probably NOT like your husbands but if it was an imbalance generally they treat it with an SSRI. The behavior of the psychologist here is a little bit weird. Given the severity of the anxiety it sounds like he might just actually respond to it.

no doubt there is now a fear of attack that surpasses it's triggers.

or an SNRI like Effexor XR ....

He tried SSRI's for years, but the side effects, for him, were terrible. Everyone responds differently to drugs and he is super-senstive to them, so he tends to get allll the side effects. From what I understand, some only get a few side effects, but that's not the case with my hubby. :( He's tried Paxil specifically, along with other stuff. I'm not sure why the dr @ the urgent care gave him a prescription to Klonopin and have often wondered if she was trying to kill him. He got very suicidal because of suddenly being on such a high dose. After he had the heart ablation, his attacks greatly reduced down to almost nill. Therefore, after consulting his G.P., therapist, and psychologist, he got the go ahead to try to get off of the Klonopin. He did GREAT and was off of it within a few months and things went well. When he was completely off of it he felt great and we could actually foresee a future, first time in years. That lasted for three-four weeks when he had an endoscopy and colonoscopy done at the same time. Afterward, his body freaked out. We're not sure if he reacted to the sedation drug or somehow the endoscopy irritated his stomach when it was already hurting just set his body into flight mode. He took Lorazapam several times because he was so panicked all the time and in a constant state of freakin' out, he needed something to control it because he couldn't himself. Now it's like he's getting these HUGE crashes when the Lorazapam wears off, as if he's getting off of Klonopin again. I just talked to his psychologist and asked if it's possible that the Lorazapam (it's in the Benzo family, as is Klonopin) is bringing on withdrawal symptoms, as if he's trying to get off of the Klonopin again. She assured me that it wasn't common, but with his body being so over-sensitive, it sure could. Now we're working on figuring out what to do to get him off of the Benzo completely. She suggested Gabapentin, but it didn't help and just made him cry all the time (seriously!). It's crazy. But, hey: I WILL NOT BE DEFEATED BY THIS, right? :)

you sound like one of the bravest people I have ever read about... I wish you both the very best of luck, wow.

Thank you for your kind words. Sincerely. :)

well, it's true. :)