View Full Version : Many questions...
02-05-2007, 07:22 PM
Hello to all,
I am new to this site. I am a member of BrainTalk and have posted there, but to no avail. Hopefully some people here can help, since my problems are neuro related.
It all started after I had a complete hysterectomy in 2003. My body just seemed to go in a complete frenzy. I know they say that after a hysterectomy it takes a while for you to recover. But this was different.
I had always had frequent migraines as a teenager, but since 2003 those migraines became more frequent and then I began having daily headaches. My body became completely fatigued. I mean I began sleeping 15-20hrs daily. This was way after my surgery recovery time. Up to a year after. I started having floaters in my right eye and I would get a pain above the right eye that would just kill me. My head would go numb, my left side would go numb. I would get tingles in my fingers and toes on both side of my body. My body would sting...like bee stings. It hurts to were clothes some time. It hurts to take a shower. The water beating on me hurts. Temperature is very confusing. Sometimes cold hurts, sometimes hot hurts. So lukewarm is usually were I keep it. Then in 2005, I started having seizures. My father has a history of seizures. His started when he was 36. However, he had a brain injury at the age of 18, so they assumed it was from that. Now they are second thinking that because of where the seizures are coming from. He is having approximately up to 20 seizures a night at times. He is scheduled for 4 brain surgeries starting Feb. 14. My first seizure was when I was 31. Could there be a connection? I think so. I think genetics play a big part. But my neuro won't listen. BTW, this is my third neuro, the other two say that my seizures are NES, they feel that they are pyschosomatic.
I have been dx with Depression, CFS, Fibromyalgia, RLS, PLMD, NES, Migraines, Lordosis, Congenital Spondylolisthesis, Chronic Sinusitis.
All MRI's and CT's have been normal other than ones done for sinusitis. They state that my frontal and maxillary sinuses are full and I need sinus surgery. I had sinus surgery done in 2000, but only for the maxillary sinus' so the ENT feels that it is necessary that I do both frontal and maxillary now. (ouch)
I know this is a lot to read and take on. I guess my questions are...has any one experienced any of these symptoms? Does anyone of any suggestions one what I should present to my neuro? Could my migraines be causing the seizures? Do you think my seizures are ES or NES? Giving your opinion, ideas and suggestions would be much appreciated.
Thank you in advance...
02-05-2007, 07:45 PM
It sounds like you have been through quite a bit, and I am very sorry to hear that! Before I get started, I just wanted to say welcome to our community and feel free to post all you like and as many questions as you have stored up. I'm sure you will notice in time that we have many people here with all types of seizures, and full of information to share.
Aside from the hysterectomy part, the types of sensations you have seem to be similar to mine when I have my cycle. They did not show up until this year (I'm 29). I'd assumed I had lost my mind mainly because everything I read stated seizures typically do not hurt unless in the event(s) you injure yourself.
It wasn't until I had an EEG which displayed my seizure activity in my Parietal Lobe. These sort of 'bounce' off of my Occipital Lobe which is why my sensations were so bizarre. I'd have pain, and temporary paralysis (while remaining fully conscious and aware). My pain would be like pins and needles and then shift into an electrical shock type of pain. The numbness normally came before any pain (so in order, numbness/tingling - pins/needles - shocking). During this 'event' my vision would blur, and objects appear to vanish, have halos, etc. Sometimes I lost my vision completely. These events lasted up to an hour at times and ended in a GM seizure. I always woke up much later, and extremely exhausted.
While I know those two lobes caused the sensations, those seizures only came one day before my period started - every single time. I do have 'normal' seizures (complex partial; GM) randomly, but these I always know when they are coming and these are the only painful types.
While some things vary between them along with the fact you had the surgery, a serious hormone imbalance could very well be a culprit here. But I could be wrong. What you should do, if you haven't, is get an EEG done (Make sure they scan you for at least 30 minutes to an hour, and that you are sleep deprived and hungry).
You should get your hormone levels checked, as well as other things (B12, and so on). I'd suggest going to an Immunologist for this so they can do proper and full bloodwork.
So, once you have checked hormones and then your other levels (vitamins and such) along with having an EEG, you should contact an Epileptologist. Explain to them you are frustrated and would like a resolution to improve your quality of life. If your Neurologist won't refer you, ask your Primary Care Physician to do it (they can).
Was your father diagnoses with Epilepsy, or does he have a tumor or any type of abnormality causing his seizures? (Sorry if I missed it and you said it, my short term memory isn't all that impressive).
Anyway, sorry for babbling. I wish you the best of luck in finding answers and please keep in touch and keep us updated. :)
02-05-2007, 07:54 PM
Hi M - Welcome to our board.
I'm so sorry that you're having so many problems but I'm so glad you've had that CT and MRI. They are SO important And I'm awfully glad Ellie was here so quickly to answer some questions -- she's so much more informed than I am :o
Have you had an EEG? That's quite important too.
It's my opinion and experience that seizures and migraines are connected. I did not have one before the other. I did not start having seizures until after a total hysterectomy but they were not connected.
Wishing you the best and hoping you are back soon.
02-05-2007, 08:21 PM
Oh, thanks Jingle for reminding me. :) I forgot to cover headaches.
My headaches were normally before my seizures, and I'd typically get migraines afterwards (as a result of seizure; not from hitting my head or anything). My Epi. told me they were connected, she said some are more like an aura (seizure aura, not migraine aura) and some were as a result of smaller seizures.
Sometimes, they just show up due to stress (I had more when I had grown so paranoid of having a seizure I'd end up giving myself a headache) or from medications you may be on.
For now, if you do not notice seizure increase with caffeine intake, drink BLACK coffee when you feel a headache coming on. I think it helps tons, but caffeine is not a trigger of mine. Also, ask your doctor if you can try Relpax for migraines (ask for samples, it's expensive) and try Fiornal (I probably spelled that wrong) generic: Butalbital for normal headaches.
Headaches are a pain (no pun, I swear) to deal with when looking for a culprit. It could be soooo many different things it's easier to find a way to comfort them than to diagnose 'what did it'.
02-06-2007, 12:23 AM
Thanks for responding so quickly...
Some things I forgot to put in the information I first posted that might help out.
Ellie, you spoke of paralysis...I too had this, twice. I was fully aware and conscience of what was going on around me, but could not move an inch. The first time it happened I was awakened at night, and could see the alarm clock, but could not move. I even tried to get a sound or whimper, but couldn't. So I watched the clock for an hour and 4 minutes until I was able to move again. It scared the crap out of me. Than was in Sept 2005. Then again in Nov (on Thanksgiving)2005 I lost movement of the bottom half of my body. I couldn't move my legs or anything. That lasted all day. We called the neuro on call and he felt that because I was also sick at the time, that it was just a virus. No big deal. I felt it was a big deal. Since then, it hasn't happened while conscience.
I have both partial and GM seizures. My dad has been dx with ES. He doesn't have a tumor or anything, but because he has had so many seizures in the last twenty years, he has major scar tissue that needs removed.
I did have an EEG done back in 2004, it too was normal. I also had an LP done in 04 that was normal. My first neuro dx me as "probable MS". I am not sure if that dx still stands with my new neuro.
I have been referred to an Epilepsy clinic at Duke in NC (where I live), but can't get in until May 1. My seizures are averaging about one or two every other week. My primary care dr. is great. He has checked all my hormone levels and other levels he could think of.
Currently I am taking Multivitamin, B-12, B-6, B-2, Complex B, Vitamin D, Vitamin E, DHA (Omega 3 -Fish Oils Purest Form), Pedolux (Butterburr Root Extract for Migraines), Folic Acid - All taken in the morning
In the evening I take Topamax, Seroquil, Diazepam, Verapamil (for daily headaches)
I hope this helps explain a little bit more history about me. If any one thinks of anything else that they could come up with to talk with my neuro about, I would appreciate it. And thanks to you both for responding so quickly again.
02-06-2007, 08:27 AM
Hi Hurtsobad and welcome to the forum. While I was reading your symptoms, I said to myself, I hope Ellie comes along because your seizures sound so much like hers. I'm so glad that she came along.
My only advice is to get on a cancellation list at Duke to see if you can get in earlier.
Hugs and welcome again,
02-06-2007, 05:35 PM
Before I started having complex partial and absence seizures I started having migraine headaches when I was 10 yrs. old I'm now 44 and sometimes when I have a cp sz. I will see colors flashing in my eyes along with muscle spasms that I can't control.
If you do have MS they have found that MS can sometimes lead to sz. for people. I have learned about this because I have an Aunt with MS. I've had 2 brain surgeries to help reduce my sz. and now the only time I have a sz. is when the hormones are chaning in my body.
Epilepsy can come from family genes. I have 1 Uncle and 2 cousins that all have had grand mal sz. and they have done a study to find that certain chromosomes can be inherited to lead to sz.
When I get a migraine headache I alway drink my coffee black and that helps a great deal. If you haven't been keeping record of all these sz. get a calendar and write down the time the sz. happens also write down what the weather is like because often a low pressure can cause some people to have sz.
I've been to many different neuros. over the yrs. but I've found going to an Epilepsy Center and working with a Epileptologist,Neuropsych, and Neurosurgeon the best move I ever made. Now I'm on the least amount of meds., I have fewer sz. and all these Drs. are way ahead of any of my former neuros as to what would be the best for me. Here's wishing you well and May God Bless You!
02-06-2007, 07:37 PM
I want to thank you all many times over for all your help. It means so much to know that other people "know" what I am going through, instead of doubting me. My husband and son try so hard to let me know that they understand and I know that they do, but all the "professionals" telling me that it is all "in my head" (which no doubt it is, neurologically speaking) really frustrates me at times:mad:
I am on a cancellation list at the Duke Epilepsy Clinic, so I hope I can get in sooner than May 1. But I also want to be with my dad while he is going through his surgeries in the next few weeks. He lives in WV and I in NC. So my husband and I will go stay up there. But it will kind of be refreshing in a way. A getaway, sort of.
Thanks again for all your helpful suggestions and support :)
02-07-2007, 06:14 PM
Here are a couple of website that may be of help to you for info.
When you come to the main page click on epilepsy or you can do a search. Here's wishing you well and May God Bless You!
02-07-2007, 09:58 PM
Hi and welcome aboard! I've had both migraines and seizures (now primarily migraines thanks to surgery, and those are limited due to medication and therapy). My migraines were due to the seizures and hormones (PCOS) and I'm not sure if you've thouught about this or not, but if you have GM seizures or even CP's are you clenching your jaw? I had terrible migraines due in part to a dislocated jaw caused by a gm seizure. It took therapy and a funky mouth guard that I wore for months at night and one during the day to correct my jaw and bite but it worked. I still take Topamax every day to prevent migraines (and seizures), but let me tell you that mouth guard therapy was amazing. I could barely open my mouth and now I have almost full range of motion again. It's worth checking into.
I noticed you also mentioned congenital spondylolisthesis- I have that too, but it shouldn't be causing your migraines. Uncomfortable, yes, I have found pilates mat work to be the best therapy for me. Have you found any particular therapy that works best for you?
I hope you find answers to your questions soon. This site is a wonderful source of comfort. Again welcome. ((((hugs))))
02-08-2007, 01:47 PM
I am on a cancellation list at the Duke Epilepsy Clinic, so I hope I can get in sooner than May 1.
The best suggestion I can give you while you wait is to keep a very detailed journal. Even when it's hard to write or color (I'll show the coloring part in a minute), it's going to be extremely beneficial for you and your epileptologist. Trust me, I've done a body chart coloring that looked like a two year old did it since it was during one of my 'shocking' episodes. I re-did it the next day for clarity, but kept both copies.
(Copied from my old post)
Tips For People With Epilepsy & Seizure Disorders
Keep a Journal
Print out blank anatomy charts (several copies) and buy a nice set of highlighters/Markers
Write down each color for each sensation. Example: Red:Sharp Pain - Orange:Tingling - Yellow:Numbness - etc..
Keep several folders. One for yourself, one for your Neurologist/Epileptologist, one for any ER doctors you may have to visit, etc.
Make SURE you have a MedAlert Bracelet/Necklace or an Emergency Card!
Update your Journal daily, at the end of each week - in a new notebook, recap each new concern you may have. This will assist you in communicating with your doctor(s)
What is the purpose of this?
Your journal will be in the format of a seizure log. You can create your own, I have made my own and would be willing to share if you'd like to use the format. Otherwise, you can find many online.
My format has blank spots for the following things:
Date: (This is to list the date of the seizure, aura, or any strange/new sensations)
Time (This is to write down the time of my seizure, aura, or any strange/new sensations)
Duration (This is to mark how long the episode(s) listed above may have lasted)
Symptoms (This is to explain in detail about the symptoms)
Activities During Episode (This is to list what I was doing at the time or prior to the episode)
What in the world are the anatomy charts and markers for?
Sometimes, as with many people who have Neurological complications - our short term (and sometimes long term) memory isn't a great friend of ours. We may forget important details our doctors need to know. Keeping these charts and 'coloring' the affected areas will allow them to see -visually- what exact areas you were attacked in. Having a journal log attached with this will give them the best idea possible, allowing them to properly diagnose you (if that applies).
As shown in the examples below (You can save these images via -> Right click, save as) - You can have one with a date, or if you'd like to explain via color - just color in each box and add whatever sensation to it's matching color (You should use the blank one, and a similar format but using your own sensations).
[In the image below, you'd color in grey boxes]
[In the image below, this is an example of what a finished chart would look like]
Get some paper clips, so that way if you have to use your body charts, you can attach them to the journal you have. I keep copies of my journal - one for my neurologist, one for myself.
I also keep copies of all tests I have had done, and make more copies for each new doctor I see. This saves time and money on medical record requests.
Hopefully, this information will help any people who needed a better way to organize their hectic seizure-life!
(Keep in mind on the images, I had to edit them really fast. I keep copies on my desk and color on them as needed, my computer copies aren't as fancy if no time was invested!)
02-09-2007, 10:10 AM
not seeing any images. Am I missing something?
02-09-2007, 10:38 AM
Should be working now, sorry about that. :)
02-10-2007, 10:10 AM
I just looked at the body charts you posted for hurtsobad73. I printed off a copy of both the color/blk&wh. These will be extremly helpful. I am still having episodes, mainly auros and blank stares, random jerking movements of extremities, feeling of fluttering, and bubbles shooting out of heart which sometimes will make me cough. I know nuero said he believed my seizures were caused by stress and or hormones,(having night sweats and hotflashes) but i have to say I don't know that I would agree with him. Many unexplained symptoms and illnesses over past years that I believe are linked together. Some of the things that I have been told are: Lupus, early onset Parkinsons, Encephalitis, ? MS. Could all be related to seizures???? Whenever you see someone different you get a different opinion.
I will keep records with these charts and see what happens.
02-11-2007, 05:00 AM
thank you so much...
This will be very helpful. It is a great idea and I think will be very helpful in explaining to my neuro and headache specialist as well as the Epiliptic specialist I will be seeing what exactly I am feeling. Lately (within the last week) and I am averaging about 2 seizures a week. (No where near my dad who is at approx. 20 a day, he goes in for part 1 or 4 of brain surgery on the 14th.) Talk about stress and worrisome :confused:
But hopefully this will lead to some answers as to why I am having seizures as well. His started at age 36, mine 31. He is now 55, but living in a state where they are not to updated on medicine and he was an alcoholic so he went many years w/o taking his meds or drinking while on his meds. So who knows what has really been happening to him over the past twenty years. He stopped drinking over 11 years ago, but no one ever explained all the different types of seizures there were out there. I can remember my dad constantly staring off into space when we were talking to him and him not having a clue as to what we were saying. We were just kids and we thought he was just daydreaming. We would literally laugh at him, but now in hindsight, not so funny. I do the same thing, but my husband and son are aware of the different types of seizures. Sometimes I could just kick myself over things like that, but then I blame it on the medical system for not giving the proper information to my parents or us kids (I was 14 and older when these were happening, so I could understand what was happening, if it had been explained).
So for babbling I couldn't sleep.
Thanks again for all your information and suggestions. I appreciate them all and will use them to the fullest extent.
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