Diabetic and first seizure

[ma701ss]

Hi All,

I am scared and confused, and need some advice please.

I'm male, living in England. I've had type 1 diabetes for 20 years, I'm now 36. I'm married with two kids. My wife and daughter both heard me scream at about 6am on 16th January (they were both in my daughter's room). They found me convulsing, eyes flickering and blood all over my pillow where I'd bitten through the side of my tongue. This appears to have been a seizure, my first one.

I remember only waking and seeing 3 paramedics at the end of my bed. I was confused and couldn't remember the date, my job, etc. My blood sugar was only 3.7 mmol but I've been lower before and not had a seizure.

At hospital the A&E doctor dismissed a seizure from diabetes, as he said diabetics do not have seizures (I knew this to be wrong). They gave me an ECG and a CT scan, and did blood tests (not sure what they tested for). All were normal. The doctor actually said to me they would not perform an MRI scan due to "cost".

I have been referred to an epilepsy consultant, the date of the appointment 4th February. The UK guidelines to my knowledge state:

a) an MRI is preferred following a seizure.

b) an EEG performed within 48 hours will show any abnormal brain activity in 70% of cases.

c) people with first seizures should be seen urgently within 2 weeks.

None of this has happened in my case, should I be concerned? The hospital and my GP do not seem to be.

My back and ribcage is now in pain, so much that I couldn't stand after the seizure. I feel slightly lightheaded and shaky at times despite not having low blood sugar. I get dull pains in my head sometimes since the seizure.

I don't know if this is diabetes related, epilepsy, etc. I'm considering seeing a private consultant next week, if anyone has any suggestions for decent consultants in the London area who may specialise in seizures, please let me know. The NHS seems to have failed me (again).

Thanks,

ma701ss

 

[Nakamova]

Hi ma701ss, welcome!

I'm sorry you are having to deal with both the trauma of a new onset seizure plus uncertainty whether you're getting proper treatment.

I think the fact that you have diabetes may make things more complicated -- it can be tricky to distinguish between epileptic seizures and diabetic seizures related to hypoglycemia. People with the tendency to have seizures are more likely to have one triggered by fluctuations in blood glucose levels, but the reverse is not necessarily true. Were you under any unusual stress before the seizure? Fatigue is one of the major seizure triggers, but just about anything can play a triggering role. Even though your blood sugar has been lower in the past, that doesn't rule out low blood sugar as a trigger in the seizure, particularly if there were other factors involved as well.

I do think that you should have an MRI. Although the majority of folks with new onset seizures have normal MRIs, in the absence of an obvious trigger it's important to rule out any structural brain causes (lesions, vascular issues, tumors).

I hadn't heard the statistic about an EEG done within 48 showing abnormal brain activity in 70% of cases -- that seems awfully optimistic given the experiences reported by CWE members. Still, it's a good idea to have an EEG done ASAP. Here in the U.S. I think it's the norm to have one done in the ER when there's new-onset seizure. That was the case for me, and I also had a second EEG done plus an MRI several weeks later when I saw an epilepsy specialist.

The pain and dizziness are unfortunately "normal" after a tonic-clonic seizure. The headaches are probably related to head and neck trauma from the seizure. You may be sore, and your brain may be fuzzy for a few weeks, but you will heal. It just takes time. It's probably a given for a diabetic, but make sure you are eating and drinking properly, and getting plenty of sleep.

Best,
Nakamova

 

[ma701ss]

Thanks I've just woken up and my blood sugar is 4.7 mmol. I have this slightly sick/acid feeling and shooting type sensations across all of my body every so often since waking up, like a very low charge.

 

[2ndchances]

Nakamova is simply the best, there's nothing I can add, however, I wanted to welcome you. Sorry for the reason that has brought you here. Keep us posted!

 

[Cint]

Hi ma701ss and welcome,

I have epilepsy and Type 1 Diabetes. Converting your blood sugar level of 4.7 mmol (what is used in Europe) to our mg/dl (milligrams per deciliter) in the U.S., that is 87, which is a good level. The 3.7 mmol converts to our 67mg/dl, which is a bit low, but should not have caused a seizure for a person who has diabetes, but it is possible. Like Nakamova said, if you were under more stress or not watching your diet carefully, these could lead to a seizure.

On Christmas Eve 2013, I had a break-thru seizure while driving. I had given myself my insulin and then forgot to eat since I was in such a hurry. When the EMT arrived and I could finally communicate, I let them know that I was diabetic also. They took my glucose level and it was down to 40 mg/dl, which converts to 2 mmol. They gave some insulin and kept me several hours at the hospital and then made sure I ate before they released me. On the report they did say it was a diabetic seizure.

However, I was in to see my epileptologist this week and told her about the incident. She said she did not think it was a diabetic seizure, although 40 mg/dl is a low glucose level because I've had seizures for years. I asked her why did the ER doc put it on the report, then? She didn't reply. I have an appt. with my endocrinologist next month and I will most certainly discuss this with him and see what he thinks.

I haven't had a seizure since or any auras and it's been a month now. Keeping my fingers crossed. And no, I am no longer driving.

 

[Endless]

ma701ss,

Welcome to the forum.

I'm hoping Robin will see this thread and chime in. Her daughter has controlled her seizures through controlling blood glucose levels. Her perspective would be helpful. But it sounds like that may not be what triggered your seizure. In fact, it could have been anything, like sunshine flickering through a window, being extra tired, sleep apnea or another sleep disorder, or any of a number of things.

Did the hospital put you on seizure medication?

I'm very glad to hear you are going to see an epi. I think a visit to a general neurologist may be in order if the epi thinks it may sound like something else, like another disease process. Please see your primary care doctor, too, to rule out other causes of seizures, other than epilepsy.

A first seizure and the time before official diagnosis can be really disconcerting, scary. Try to not let it get to you. Take your wife to your appointment with you if you can. The doctor usually likes a witness to the seizure present to describe it. Also the doctor will be sharing lots of information and it helps to have another person there to help remember it.

 

[Cint]

I'm hoping Robin will see this thread and chime in. Her daughter has controlled her seizures through controlling blood glucose levels. Her perspective would be helpful. But it sounds like that may not be what triggered your seizure.

It does sound like that is not what triggered his seizures. Like I said, I, too, have E AND Type 1 Diabetes and my seizures are not controlled by controlling my glucose levels. I've even had seizures when my glucose levels are within the normal range. Epilepsy and Type 1 Diabetes are two separate diseases.
And my Type 1 diabetes started 20 years after my seizures.

I don't believe Robin's daughter was a true diabetic. She may have had low blood sugar, but we all have that once in a while and there is a HUGE difference between hypoglycemia and Type 1 Diabetes. So does my daughter, but she just doesn't have seizures. If someone truly has diabetes, they know what their A1c level is every 6 months.

 

[Belinda5000]

when your diabetic your not suppose to drive when your not controlled.My DH is diabetic I know.

 

[Cint]

when your diabetic your not suppose to drive when your not controlled.My DH is diabetic I know.

When a person has Type 1 diabetes, there can be a fluctuation in the glucose level, so sometimes the levels can fall even when driving. Like I said before, that is why we go in every 6 months and have our A1c levels checked. It should not be over 7. To keep it 7 and under, we need to have our blood sugar levels 150 and under on a constant basis. And to do that, we have to check it before every meal, upon waking and before going to bed. Sometimes in the middle of the night, my glucose has fallen to 50 and below. I take a snack, wait 20 minutes for it to go back up to 80 or above, then I am fine. When a person is a true diabetic, that does happen. When the A1c level is above 7, that is when problems develop and then a person could have problems with driving.

Does your hubby have his A1c checked every 6 months?

 

[Belinda5000]

I don't know if he does or not? my DH also has epilepsy

 

[Cint]

I don't know if he does or not? my DH also has epilepsy

And..............?

 

[ma701ss]

Hi thanks for the replies. I am still very scared, and my wife keeps crying remembering what I looked like during the seizure. It's been almost two weeks now since the seizure and today at two different times (several hours inbetween) I've felt shaky, slightly dizzy and sick. It passed after about an hour each time. Could this still be from having the seizure, or possibly a symptom of whatever caused the seizure? My blood sugar level was well above normal both times.

 

[Nakamova]

If you are not on anti-seizure or other meds, and don't have an infection, then I would yes the shakiness is very likely connected to whatever caused the seizure. I hope you get some answers soon.