New here with questions

[Blu]

Hi everyone,

For the last 5 years Ive been experiencing what I call 'spells' and my husband has started questioning if they are really harmless spells or possibly seizures. Usually it happens after I've been asleep for about an hour, but it has also happened at random times, I have yet to figure out what exactly triggers it.

I get a very strong metallic taste in my mouth and about 5 seconds later every muscle in my body tightens up, my mouth is shut tight and I make some sort of straining noise (like I'm lifting something heavy), I'm freezing cold and shivering but sweating. I don't thrash about or anything, if I'm laying in bed I'm flat and stiff, arms and hands curled up to my chest. If its during the day, I end up leaning into a wall curled up waiting for it to pass.
The tightening lasts about 10 seconds, lets up for about 5 seconds then tightens again, over and over like that for about 4-5 minutes total. When its over I am still freezing cold, soaking wet by this point with sweat and I get an immediate pounding headache.

Ive never given it a thought that it could be seizures, during the spells I'm awake and alert (I always assumed one was unconscious during a seizure) but I'm unable to talk because my jaw muscle is so tightly closed. While it is happening, its a fast shivering shaking type of thing and the only thing different mentally is I seem to get very irritated and swear a lot when its over. For the next day my muscles are pretty sore and the headache lingers. It happens about 1-2 times a month, sometimes more when I'm super stressed and tired.

I have an appt with my doctor in three weeks and I will be talking to him about it. Just though I could ask you all for your wisdom ahead of time so I can go in armed with info.

Thank you so much for taking the time to read this,
Blu

 

[Nakamova]

Hey Blu, welcome to the forum.
You've come to the right place, there's a ton of good information here, and plenty of support as well. What you describe sounds like simple partial seizures. They don't involve loss of consciousness, and they often do involve physical and other perceptual disturbances.

You've noted that they seem to be aggravated by stress and fatigue -- that's a good start: It's a good idea to keep a journal describing what happens during your "spells" and also how often and how long they occur. That will be very helpful to your doctor. In addition, if you can keep track of other things like diet and nutrition, hormonal changes, metabolism, sleep, activity -- anything that might potentially be a trigger -- it will be very helpful to you as you try and figure out what's going on.

Best,
Nakamova

 

[epileric]

Meetz has a great list of things to keep track of in a journal

Oh, and welcome Blu, It's a great place here.

 

[Meetz1064]

Hi there

Blu, it's very nice to meet you.

Welcome to CWE! Feel free to check out all the different nooks and crannies here--the Library and Kitchen are great for information, and the Padded Room is great for venting when you really need to.

Nakamova's right--it sounds like those are simple partial seizures. Perhaps now is the time for you to start keeping a journal, with a number of different things in it.

Here is a list of the things that Epileric mentioned....

**********************

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM. ****side note**** Auras ARE partial seizures!!!

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.


Responses to the Above List


1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com where the actual given name is GARD—it stands for Gut Absorption Recovery Diet).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.

***************************************

Hope this helps!!! And don't worry, whatever questions you may have, we'll do our best to answer. If we can't, we'll point you in the right direction. And, we'll be here to support you.

Take care!!

Meetz
:rock:

 

[Blu]

Thank you for the warm welcome and all the information. I have been reading around the boards here, so much information! And its weird how much of it sounds familiar. I have noticed most of them do happen just before my MP, I'll remember to tell my Dr about that. Ive also been looking up all the different types of seizures...

Should I tell my Dr I think I'm having simple partial seizures? Or should I just tell him about whats going on and let him decide?

Will he put me through a bunch of tests? I've recently had an MRI for a suspected problem with my pituitary that has my vision all weird. MRI report said empty sella syndrome and suspected Intracranial hypertension.

If it turns out that it is seizures, will I need to take meds? If simple partial seizures are left untreated, do they get worse or pose any danger?

Sorry for all the questions, its a lot to take in and I'm confused :?

 

[Rae1889]

What is happening with your vision? as distorted vision can be a simple partial seizure *seeing floaties or glitter, or tunnel vision, having the "drunk wave" to images or watching this grwo and shrink*

You might want to mean that to your doctor/neurologist

 

[RobinN]

Welcome, Blu
If it were me going in for my first appointment... I would wait and let the doctor give you his/her opinion. You most likely will have a number of tests. Some worth doing, others are to cover them .... in case. I am sure the MRI that you have taken will be helpful to your doctor. Make sure he has a copy of it. I use to think all of that was shared from doctor to doctor, but it isn't. You should ask for a copy of it on a DVD.

Many people are put on meds, but for about 30% of all patients meds do not work. I learned that there are wonderful alternative therapies that are never discussed in a conventional medical office. You might do some research on neurofeedback, and how nutrition plays a role in neurological disorders. Conventional medicine usually only prescribes AEDs (medication), implants, and surgery.

In the short term I wouldn't be nervous about seizures posing a danger unless they continue in what is understood as "status seizures". You have plenty of time to sort out how you want to approach your personal health care. Remember personal knowledge is extremely important in making these decisions. Your doctor will respect you for being proactive. If not, then you need to find a new doctor.

Good luck at your appointment. I hope you hear some encouraging news. Positive outlook plays a huge role in controlling seizures.... IMO.

 

[Blu]

What is happening with your vision? as distorted vision can be a simple partial seizure *seeing floaties or glitter, or tunnel vision, having the "drunk wave" to images or watching this grwo and shrink*

You might want to mean that to your doctor/neurologist

My left eye lid is droopy and the vision in that eye is very blurry. In fact the whole left side of my face is always numb. Ive had my eyes checked and they cant figure out whats wrong, they just keep going back to... 'I think there's a problem with your pituitary gland or to much fluid in your head pushing on nerves' and passing me off to a different doctor and nothing has been done. I do see a lot of flashing lights, floaters, etc. I'm always asking my husband why the lights in our house keep flickering on and off, thinking there's an electrical problem somewhere, and he just looks at me funny and says the lights are fine. onder:

Maybe this is all connected somehow?

 

[RobinN]

Maybe this is all connected somehow?

This is what I would be considering also.
Hope you have some proactive doctors involved.

 

[vapour]

welcome to the forum. I have found this place very helpful, i started coming here about a year ago.

 

[Nakamova]

Hi Blu --

Provide your doctor with all the descriptive information you can about the spells -- when, how long, how often. What happens. If they are changing or happening more often.

Give him the info about your vision problems as well. Did they start at the same time as your spells? Have they changed in any way over time? etc.

You might want to write everything down, and give your doc a copy. Try and keep a record of what the doctor says as well, and note what tests he suggests. Write down any questions you have afterwards too, so you can follow up with the doctor if anything seems confusing. If possible, have your husband go with you to the appointment, to help keep track of some of this stuff.

 

[Cint]

Will he put me through a bunch of tests? I've recently had an MRI for a suspected problem with my pituitary that has my vision all weird. MRI report said empty sella syndrome and suspected Intracranial hypertension.

If it turns out that it is seizures, will I need to take meds? If simple partial seizures are left untreated, do they get worse or pose any danger?

Sorry for all the questions, its a lot to take in and I'm confused :?

Hi Blu,

Have you seen an endocrinologist for the pituitary problem?
One time they suspected I had a pituitary tumor and it turned out it was jsut a hormonal disorder. That is what endocrinologist takes care of.

My seizures initially started out as simple partial, then went to CP and increased in intensity to T/C. I sure hope they find out what is going on with you.

 

[Rae1889]

My left eye lid is droopy and the vision in that eye is very blurry. In fact the whole left side of my face is always numb. Ive had my eyes checked and they cant figure out whats wrong, they just keep going back to... 'I think there's a problem with your pituitary gland or to much fluid in your head pushing on nerves' and passing me off to a different doctor and nothing has been done. I do see a lot of flashing lights, floaters, etc. I'm always asking my husband why the lights in our house keep flickering on and off, thinking there's an electrical problem somewhere, and he just looks at me funny and says the lights are fine. onder:

Maybe this is all connected somehow?

Umm...sounds like bell's palsy

http://en.wikipedia.org/wiki/Bell's_palsy

I have a friend who has it, and he gets the shiver things too. but he described it as an electrical shock that went up and down his spine a few times. completely aware but couldnt verbalize what was happening.

 

[skillefer]

Hi Blu! Welcome to CWE. Everybody has given great advice. Meetz mentioned me in her reply. People sometimes ask "why eat 6 times a day? That seems like a lot!" Here's why...Low blood sugar can cause seizures. You do NOT have to have diabetes to have low blood sugar. Many people have a bad habit of skipping meals or eating lots of starchy or sweet foods. This can screw up your blood sugar. People are even more likely to have blood sugar issues if there is anyone with diabetes in their family's.