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Shaking episodes, cannot think or speak clearly, taken Clonazepam, done CT, EEG, MRI, had pertussis, idiopathic hypersomnia

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Practicing since : 2001
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Q: Shaking/convulsing episodes 49, Male, 200 lbs
I was exposed to purtussis by a doctor at work over a period of 2 or 3 days while he was coughing. The hospital passed out antibiotics to hundreds of employees that were exposed, plus the tdap vaccination. That was on July 28, 2010. (Even though I told the hospital that I was sick with a high fever, they would not test me for purtusis till 8 days later after I had finished their antibiotics and the additional antibiotics from my doctor.. They tested me for just purtusis after the antibiotics and said that I never had purtusis or any bacterial infection and that I had a virus. They said that no one in the hospital got sick from purtusis, yet everyone that was out sick got full pay for the time they missed work, that came from a special fund. It didn't come out of our sick or holiday pay.) That evening I got a high fever that lasted for 3 days. I had been going to the gym for a year and losing weight prior to this and was very motivated, but never had the strength to get to the gym after that. Soon after, my right hand started shaking a little and slowly spread through my body, then by January 2011, the shaking was so obvious, the nurses wanted to send me home. Eventually one day the doctors sent me home because of the violent shaking. The episodes are gradually getting worse and longer in duration. They sometimes resemble seizures. People have called 911 on me about 30+ times in the last few months when I am out in public. I can feel it coming on and have 5 to 10 min to make it to my truck to rest till it goes away in 20 min to over an hour. Many people panic when they see me in the truck shaking that way because they mistake my resting with the truck parked and the engine off, for driving in that condition. Sometimes the attacks can be violent and last up to 2 1/2 hrs. It is also affecting my thinking. I get fatigued easily, have loss of energy, miss hearing sentences when people talk to me on occasion. Once every few months or so I lose the ability to speak for maybe 20 seconds at a time. My words just come out as a garbled mess. During the attacks I have trouble thinking clearly. During a very bad attack when outside and no other place to go out of the public, I will lay myself down and and shake. It is the only way I can totally let go and let it all out. I can still hear fine, and if my jaw muscles aren't clenched too tightly, I can still talk. I know it isn't a medical emergency. I feel comforted when around friends and family when I go through this, because they treat me the same and know I just need to go through it and it will pass. If I am around medical personel, not only do I have to deal with my shaking/convulsing, I have to deal with doctors and nurses that are running in panic mode. I have been to three neurologists before I traced it back to that sickness/vaccination time. One said there is nothing physically wrong and I need to see a psychologist, the second one from UCLA ordered a few labs and said to see a physical therapist for my movements, the third just did some labs, and all the labs show nothing abnormal. I have had a CT done on my brain...normal, and am waiting for the results of the EEG and the MRI of my brain, which I read they do not show anything on the neuro level. Another intern doctor I talked to about where I believe the symptoms originated, said that is so rare and so you don't have that. He came to this conclusion without asking anything about my signs, symptoms and medical history. I am currently waiting for a referal to see an infectious disease doctor. All this shaking along with my idiopathic hypersomnia is making my life mostly unproductive. I feel I have no life most of the time. Help! Where do I go from here when doctors won't listen and ask and consider my medical history? The recurring theme I constantly hear is either "see you in 2 months", "see you in 3 months", or that is all I can do for you...good luck.
I have asked my primary doctor for more than 2mg a day of Clonazepam, but he said he doesn't want to prescribe too much. So I try and ration them. The dose lasts 2 to 4 hrs and sometimes takes the edge off. The rest of the time I just have to deal with all the shaking the best that I can and hope no one calls 911. The shaking is at it's worst when I am relaxed, like sitting or standing in line. During an attack I can still focus and over-ride it temporarily to type, ride my bike, or drive. The attacks are at random and can be strong or to a lesser degree and the length varies. At some point in time it just stops suddenly and all the contracting muscles just relax.. On a side note, I have just met with a sleep doctor at UCLA for a consultation for a sleep study. She put in for a referal to the insurance company then it will be another 3 month waiting period for the sleep study.
I have a lot of trouble thinking straight and organizing my thoughts and don't know where to go from here. Eating a good diet of raw vegetables, low fat protein and plenty of exercise does nothing to improve the symptoms. Any help is greatly appreciated. Thank you.
Posted Wed, 2 May 2012 in Brain and Spine
Answered by Dr. Shiva Kumar R 5 hours later

Thanks for the query.

First thing i would like to inform you is that if at all you had pertussis, it is a self limiting illness and does not cause any neurological problems at the most.

Also you were tested negative after the course of antibiotics meaning you got cured after antibiotics or there was no pertusis at all.

Rest of the problems like the shaking in the hands lasting from few minutes to hours with some speech involvement does not suggest to me that you are suffering from seizures or epilepsy.

Also CT scan says that you do not have any structural lesion in the brain. MRI may not add much to the CT findings. EEG is helpful to rule out epilepsy.

So what i feel at this point of time is you are probably suffering from psychogenic seizures.

But before that we need to confirm you dont have epilepsy. To do this you have to get a video-eeg done where we record the events and correlate with the eeg.

In epilepsy we see definite correlate and not in psychogenic seizures. So do not panic. Just wait for the MRI and eeg report.
XXXXXXX a psychologist and get medicines for relieve your stress and anxiety. If there is any doubt about your problem then go ahead and do video-eeg and confirm the same. Take care.

Hope i have answered your query.I will be available for follow up.

Above answer was peer-reviewed by
Follow-up: Shaking episodes, cannot think or speak clearly, taken Clonazepam, done CT, EEG, MRI, had pertussis, idiopathic hypersomnia 29 minutes later
You like all the other doctors keep skipping over the adverse reaction to the vaccination.
Answered by Dr. Shiva Kumar R 1 hour later
Thanks for getting back to me.

Every vaccine has one or the other side effects ranging from milder flu-like symptoms to serious side effects.

But i cannot completely rule out saying no adverse effects have occurred.

But your current problems are not related to the vaccine or its side effects.

So be calm, relaxed and if possible try to get an answer for the current problems.

Do not get used to too much of clonazepam which is not good.

Wishing you good health.

Take care. Bye
Above answer was peer-reviewed by
Follow-up: Shaking episodes, cannot think or speak clearly, taken Clonazepam, done CT, EEG, MRI, had pertussis, idiopathic hypersomnia 9 hours later
What a waste of my money. You have told me just basic information I can find on google. Apparently, no one has heard of such a severe chronic reaction to the vaccine, except the drug companies and the vaccine attorneys. And yes, there are vaccine attorneys that specialize in that.
Answered by Dr. Shiva Kumar R 13 hours later
Thanks for getting back to me.

I am sorry that the information provided by me did not satisfy you. It may look basic to you and might be available to you on google also. The information provided on various good websites is also by experts and doctors like me.

In my clinical experience we have not heard or seen something which you have described to me.

So you can have a word with Vaccine attorneys and drug companies and see if they can help you out.

Wish You Good Health.
Above answer was peer-reviewed by
Follow-up: Shaking episodes, cannot think or speak clearly, taken Clonazepam, done CT, EEG, MRI, had pertussis, idiopathic hypersomnia 45 minutes later
Another waste of money trying to get more information. I wish I had my $25 back. There are many rare things most doctors have not come across. That still does not exclude them from existing. I wish I had a doctor like the actor on the show "House" working my case. He doesn't give up. He looks for answers, even if they aren't common. Yes, I do know that is fiction and doctors spend very little time on each patient, because there is a long line of patients behind them. So what if they miss things and people suffer or die. Why are people always calling 911 on me when they see me convulsing? (around 30 -40 times) I do tell people not to call. firefighters and paramedics can't treat neurological conditions. It would be the same if they responded to someone with cerebal palsy. If you were to spend a day or a week in my shoes and see what little you can get done without the shaking, fatigue, and the mental and physical exaustion to the point of sleeping the rest of the day you might understand. Since you don't experience my symptoms that started the day I got the vaccine and changed my life completely from that day onward, you will not understand. You can only diagnose the common problems we would both see in our respective hospitals in which we work. Most of us do not know anyone that has been hit by lightning, it is rare, but it still happens.
Answered by Dr. Shiva Kumar R 5 hours later
Thanks for getting back to me again.

Rare presentations of a common disease are commoner than rare presentation of a rare disease. I know you are experiencing lots of physical and mental stress. If I am not able to help your problem someone else will be able to help you out.

If a person convulses for more than certain time, he may land up in status epilepticus which is a medical emergency. Hence it is better to prevent an emergency by calling 911 and reduce the time of attack. The more a person is under going seizure attack the more would be the damage to the brain and so is the risk for life.

The common idea is every one should get the best information here that they look out for. I hope someother neurologist would be able to help you.

Above answer was peer-reviewed by
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