New here an looking for answers

[Buffheart]

Hi all! I am new here and, although I have not been diagnosed with Epilepsy I believe I have it. My only medically confirmed seizure was a grand mal in May 2010 after taking Benadryl. Before then I had had some strange "episodes" that nobody could explain that I think may have been seizures.

In joining this site I hope to find some answers, or at least somebody who won't write me off. My doctors think I am crazy and my parents don't believe me. Only a few of the episodes have been visible, but of course my parents can explain it all away. Part of the reason I never talk to my doctors or my parents about these things is that I know they won't believe me.

Over the next few weeks I hope to post some descriptions of my "episodes" to see what everybody thinks, even if it is just to say that you don't think they are seizures. Epilepsy seems to fit most, but not all of my "episodes", so it may not be Epilepsy.

Anyway, ask any questions. Oh, please forgive me if I say something wrong. I am new here am still getting the hang of things.

 

[huskymom]

Hi Buffheart and welcome :hello: I hope that you find help and answers here. Everyone is great and are here for you.

 

[Endless]

Buffheart,

Welcome!

I so understand what you are going through. Last week I described one of my seizures to my primary care physician, she gave me this look, and said "weird." I'm pretty much done with her. It was a simple partial temporal lobe seizure - a hallucination. Not all that uncommon in the people in here.

I still have people give their "reasonable explanations" to explain away my seizures. It drives me nuts. Like, no, not everybody smells extremely strong, weird burning chemical smells out of nowhere. I'm not smelling a gas leak. I think their attempts to explain them away makes them feel better - they don't have to accept or deeply think about a topic they aren't comfortable with. Or that they are ignorant about.

About your doctors. Would your parents feel comfortable with you going to see a neurologist? You can ask your doctor for a referral. A good neurologist can sort all this out for you.

 

[Nakamova]

Hi Buffheart, welcome!

Definitely feel free explore the forums and ask questions about your symptoms. CWE members have plenty of experience and anecdotal advice to offer. Unfortunately a lot of that experience is with skeptical friends & family and dismissive doctors. Be persistent about finding a doctor to listen to you.

This may be helpful -- it's a list of some of the different kinds of auras (also called simple partial seizures) folks can have: http://www.coping-with-epilepsy.com/forums/f27/simple-partial-seizures-epilepsy-4858/

Best,
Nakamova

 

[Denise Cunniff]

Have you considered that your reaction to Benadryl might be an "allergic reaction" to one of the ingredients? There may be the same kind of ingredient you are sensitive to that could have possibly been ingested before your other symptoms? (e.g. MSG/gluten - has many names so do the research) May not be the case... just sayin. You might want to also consider keeping a daily journal on diet, medications, symptoms (e.g. headaches, upset, fogginess, anything out of the norm) and see if you can connect any dots.

It might be best to rule out “allergic reaction” first before you go the "epilepsy" route. Regardless, this is all part of your medical history.

Also research the symptoms on line. Many disorders and diseases have similar symptoms. I found it rather difficult to gather specific information on this site - so many threads to sort through, but a great site regardless!

 

[Buffheart]

It seems that in order to see a neuro I have to have my doctor refer me, but she doesn't believe me so I don't see that happening any time soon.

Although the Benadryl seizure may have been a fluke, I have had other things happen before and since that I can't explain. Besides, even though no one in my family has Epilepsy, I and many other family memebers have or had various neurological disorders so there is a good chance that something neurologicial is going on. At this point I am trying to explore all of my "options", so to speak, when it comes to neurological disorders (is Epilepsy a disorder) and, although Epilepsy seems to fit so many of my episodes, it cannot explain all of them. Then again, every brain is different...

 

[Buffheart]

Plus when I was 18 a near diagnosed me with myoclonic jerks, which I have been told can be seizures. Are they always seizures? Hopefully someday I will get some answers and find the right help.

 

[Endless]

Buffheart,

Your doc doesn't have to believe you in order to refer you. You can ask her if she objects to a specialist evaluating the situation and providing a second opinion. No doctor in their right mind will say "no" to a second opinion. That would be highly unprofessional to try to deny a patient that.

 

[Buffheart]

I have been trying to call a clinic that I may not need a referral to get into, but it is over an hour away and I can't drive that far, plus I am told that the waiting list is months long because it is new and essentially free. Hopefully there is a shuttle and hopefully I am not too old to get in (I am 20 but the clinic is at a children's hospital).

What about the myoclonic jerks? Some people I have talked to said they are always seizures, and some say they may not be. What say you? In the next few days I hope to post more "episodes" but I am trying to get better acquainted before I launch into all that.

 

[Nakamova]

Myoclonic jerks aren't necessarily a definitive symptom of epilepsy, but they often suggest some sort of neurological disorder. Harmless versions of myoclonus are hiccups, or the sudden jerk that many people experience right at the moment of falling asleep. You can read about them here: http://en.wikipedia.org/wiki/Myoclonus

 

[RobinN]

My son went bonkers when I gave him Benedryl, for the first and only time. He was bouncing off the walls. If it can cause that type of neurological change, I am sure it can affect others in another way. You certainly might be sensitive to one of the chemicals. It might be a good idea to check out what they are and keep notes if you see the odd "episodes" continue.

My daughters sensitivies lowered her seizure threshold. When we are careful with what goes into her system (nutrition especially) she remains seizure free.

Others that I have met have controlled myoclonic seizures by making nutritional changes too. My daughter has only had Tonic Clonic seizures.

 

[Buffheart]

I am no longer allowed to take any antihistamines due to something in them. Maybe Diaphynhydromine (sp?)? Even after being on Lamictal for years due to mood disorder hasn't helped any. Actually for about a year after being put on it some really strange things happened that had never happened before but have happened since. Since I was on other meds at the same time it may have been another med, but even after being taken off some of them strange things still happened though not as frequently.

When you say "diet changes" do you mean the keto diet?

 

[Texasirish]

Buffheart

Welcome to the site! You will find the answers you are looking for here from some who share the same as you and other who will provide guidance and comfort!

 

[I'mconfused]

hi Buff heart,

i'm new here also, and i can definently relate to your story! My doctor doesnt believe me when i tell her about the "episodes" either, she keep telling me i'm stressed or anxoius about something, she told me to see a pyshcologist! my episodes occur only while sleeping, my head would shake really fast for a couple of ceconds, and i cant breathe properly, its almost like im hyperventilating. this has been happeneing for years!, and still people are skeptical. i feel your pain! I do pray that we both find answers, and find a doctor that will actually listen to us, before calling us crazy!

Peace & love.

 

[nicholas:)]

Hi all! I am new here and, although I have not been diagnosed with Epilepsy I believe I have it. My only medically confirmed seizure was a grand mal in May 2010 after taking Benadryl. Before then I had had some strange "episodes" that nobody could explain that I think may have been seizures.

In joining this site I hope to find some answers, or at least somebody who won't write me off. My doctors think I am crazy and my parents don't believe me. Only a few of the episodes have been visible, but of course my parents can explain it all away. Part of the reason I never talk to my doctors or my parents about these things is that I know they won't believe me.

Over the next few weeks I hope to post some descriptions of my "episodes" to see what everybody thinks, even if it is just to say that you don't think they are seizures. Epilepsy seems to fit most, but not all of my "episodes", so it may not be Epilepsy.

Anyway, ask any questions. Oh, please forgive me if I say something wrong. I am new here am still getting the hang of things.

hi-ya! It's important to keep records. Initially my GP dismissed my 'fits' partly because I have depression and I don't cope well with stress. I was referred to a neurologist who cut me short and said I worry to much. I had a 24hr eeg and a 24hr videotelmetery both of which showed no abnormalities- I was not surprised because whist 'wired-up' I don't feel I had any fits. My GP came on my side when I presented her with detailed records. I got a second referal to a neurologist who is more understanding. She put me on Tegretol in May and Clonazepam at the end of September. I am fully aware when I am having my fits. Since being on Tegretol the Fits I feel are epileptic have mainly stopped (they were mainly physical in their manifestation) and I now experience mostly vocalizations. Don't keep your experiences to yourself, keep records and be persistent- make regular appointments with your GP or change GPs if you find you are getting nowhere with your current GP.

Best Wishes
Nick