My Symptoms - Please help

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It all started when I was 15 (I am now 23 year old male). I was round my neighbor's house. I was sitting on the floor and I was suddenly over come with breathlessness.

I didn't have another incident for a few months after, but when I did it was totally different. My body would violently shake, but it was mostly in my left leg and abdomen. These symptoms would become more and more frequent to such a point I would have it about 10 times a day. But there would be times where I would only have it once a week or a month.

I have had the following tests. 3X EEG, ECG, MRI, CT Scan, a picture taken of the optic nerve, ultrasound of the eyes, several eye tests and several blood tests including immediately after an attack. The results all came back negative, however they did find calcium deposits on my optic nerve in the left eye (I think) which is putting pressure on the optic nerve. My attacks are not triggered by light.

There was one time when I had the attack and they gave me Diazapam IV 10mg. This didn't work and so the repeated it a further 2 times. Totaling at 30mg in the space of 10min. The Diazapam still didn't do anything.

I have seen 3 separate Neurologists' all of whom said I was faking it. And eventually I ended up seeing a Neuro Psychiatrist who put it down to Anxiaty and referred me for CBT. Back then I admit I was anxious because of exams and also having no idea what was happening to me.

After about 2-3 years my attacks calm down to only 2-3 time in a 6 month period and very minor. But recently over the past 2 years it has peeked up again. Nothing as bad as before but sometime it would last for 1 hour.

The symptoms I get before an attack happens are:

A strange electric sensation at the back of my neck shooting to the bottom of my spine.
In ability to communicate (I.e my eyes are open but my brain isn't)

The parts of my body that are effected during an attack are:

Left leg and Abdomen (always)
Arms shaking (sometimes but not violent)
Whole body is stiff and ridged
Pins and needles from both elbows to my hands and my nose and upper lips (rarely)
Pale body (always)
Sweating (always)
People have said my hands were cold but I am unaware of this.
I feel hot (always)
Neck muscles twitch making my face twitch also (almost all the time)
Left ear twitches all the time

One thing I am certain of is that I can hear and feel everything and I am aware of my surroundings. But there have been I think 2 or 3 instances where I lost complete memory for a short period of time (1-2hrs)

There was a time, about a year ago. I had some massive neck cramps and it would hurt my eyes and some localized parts of my head. It happened twice so far, both of which I took Voltarin IV and it provided immediate relief. After this I have been get some pain but this has now seem to have stopped.

The reason why I am disputing Anxiety is that for the past 2-3 years I have been extremely happy, wear as before I was scared and depressed and had lots of worries. Even now I'm fine. But I am still getting the attacks. I just had an attack yesterday and the doctors did an extensive blood test. One thing that they were concerned about was my Creatine Kinase (it doesn't say which on specifically). The reading should be anything between 30-200 but mine was 1340 IU/L

I was looking at Focal Seizures, and it looks like I have some of the symptoms:

Inability to Speak
Inability to Move
Muscle jerking - on one side of the body
Muscle stiffening - on one side of the body (except mine is whole body)
Abnormal uncontrollable muscle movements
Abnormal uncontrollable eye movements
Uncontrollable blinking
Facial twitching
Uncontrollable limb shaking
Sudden uncontrollable fear for no apparent reason
Sudden sweating (during attack)
Sudden paleness (during attack)
Sudden loss of familiarity of known surroundings
Sudden uncontrollable crying

Some of these symptoms are common with me and some are rare. The ones which are most common are the ones I mentioned earlier.

My recovery after a severe attack can take 15min, if it was a light attack it would normally take just a couple of mins. During the recovery I take a while before I can communicate and speak. I also feel exhausted but after recovery I feel fine, fully alert and active. When it comes time for me to sleep, I sleep like a rock and a lot of the time it is a bad and an uncomfortable sleep which is not normal.

The only medical conditions I have are:

Asthma (due to hayfever)
High cholesterol (no medication taken)

So could some one please give me some advice and enlighten me.

Thank you for your time in reading this.

Kind Regards

None of the doctors diagnosed your type of seizures? Aren't the seizure behaviors and tests enough for them to diagnose that you have seizures and what kind they are? And who wouldn't have anxiety after finding out they have seizures, worrying about having another one, not knowing when they would happen, or worrying about what would happen to them if they had a seizure? Sometimes doctors just don't understand. Hope your situation improves.

I'm so sorry you are going through all of this. And you have to deal with the doctors on top of it.

The thing about neurological disorders is some of them look a lot alike. It's hard to tell what's what. Finding a good neurologist is extremely important. Most people in here have gone to many before they found one that did the job for them. One way to find a good one is to go to a major teaching hospital, if there is one in your area (a hospital that is part of a big university)

Seizures can be epileptic, which means it's caused by an electrical misfiring in the brain. They can also be physiologic, which means it has a physical cause like a heart condition. They can also be psychogenic, which means they have a psychological cause. If you've had a negative EEG then the possible physiological causes (physical causes) for seizures need to be ruled out. All the tests you've had are a good start, but there are more.

CK is an enzyme that's found in the muscles in the body. The elevated CK levels you had are puzzling. Partial (focal) seizures usually don't have an increased level of CK. But generalized seizures (for example, tc's) and syncope (a heart disorder) do. Syncope sometimes looks like seizures, though not like your seizures exactly.

If it is epileptic seizures, some of what you describe could be temporal lobe or frontal lobe seizures. Partial (focal) seizures in the frontal and temporal lobes are sometimes too deep in the brain to be detected by EEGs.

IMHO, sometimes when doctors can't figure out what's wrong with someone they fall back on "it's all in your head," or "you are faking it." Instead they should just admit they don't know and refer you to someone who can figure it out. Sometimes it IS psychogenic, but that conclusion should only be reached after every single other possiblity is tested and eliminated. Problem is, doctors are human and don't know everything. So they don't know what they don't know.
Red Flags

Asthma (due to hayfever)
High cholesterol (no medication taken)

Nutrition might be an alternative therapy you might consider.
Many doctors now are prescribing nutritional changes for children with Asthma
Probiotics helped my son and allergies. Google the two and you will see many links.

IMHO it is the first place to begin. Because there is also a link between nutrition and the symptom called seizures.
Hi Dani, welcome!

Your symptoms do sound like seizures to me. It's not uncommon for some kinds of seizures to fail to show up on EEGs, so that by itself doesn't rule out an epilepsy diagnosis. I recommend you try and see an epileptologist and present them with notes on the symptoms you've been having, including details on when they are happening, what happens, how long they last, and whether they have been changing in kind, frequency, or duration. A good epileptologist may be able to make diagnosis based on your symtpoms alone and suggest a treatment that might help.

I had something similar happen to me a few months ago.

The first one my whole body started shaking like crazy. I knew what was going on, could answer questions with the right answers. It was like a seizure. I went to the er and I it stopped after around an hour or so, I can't remember if they gave me any meds or not.

After that my arm or leg would shake for long peirods of time, I don't think any other part of my body would though. My neurologist put me in the hospital for tests but everything came back and said it had nothing to do with my epilepsy.

I have a VNS and ever since the last time he adjusted it, about 2 months ago, the shaking stopped.
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