Epilepsy Talk
Stopping seizures… | April 23, 2010
Who wouldn’t want to stop — or even alleviate — a seizure? Well, you may be surprised at how many options there are. (I was surprised myself!)
There are some methods that stop a seizure in it’s tracks. Some shorten seizures. And some relieve you of the dreaded after-effects. So, even though some may not be effective or attractive to you, you do have choices.
The Natural Route
The easiest way to stop your seizures — recommended by eforum members — is by placing your pointer finger on the dent above your upper lip (below your nose). This pressure point seems to immediately stop the seizure.
How does it work? The pressure point under your nose is the end to many nerve endings…including certain cranial nerves. Probably the same proximity that makes the area vulnerable is what makes it an effective location for seizure disruption. (Note: Afterwards, you might try taking an Advil or Tylenol with a big glass of water, before you go to sleep to prevent the possibility of a headache.)
Of course there’s behavior modification. Reports indicate that some people have learned to interrupt their seizure process by replacing the aura-induced perception with another pleasant thought. Focus on an enjoyable experience and transport your mind there. Although you may not prevent the seizure, it can be much easier to deal with just by easing the tension. Plus, you can possibly make your seizures shorter in duration and frequency.
Mental imagery can go a long way in arresting a seizure – if you catch your aura in time…
But first you have to get to know your triggers and the auras that usually follow them. Try keeping a daily diary to track the events that lead up to your seizures. Once you know your triggers, you can make the move to take control of your fear…distract yourself…or even change your emotional state.
(I think of riding through Hayden Valley in Wyoming and do deep breathing exercises. Sometimes the Hayden Valley part doesn’t work, but the deep breathing never fails!)
Medications
Then there are the emergency medications. Again, some work better for people than others.
Traditionally, the first line of fire in rescue meds for extreme cases has been Diastat (generically known as diazepam.) It’s available in a gel form that’s inserted into the patient’s rectum to stop a cluster of repeated seizures. (It’s absorbed quickly that way.) However, both children, adults and caretakers aren’t too keen about it, and you can understand why. But recently, it’s been made available in a liquid oral form that comes in a syringe and goes right into the cheek of your mouth. Ask your neuro or pharmacist about it, because it’s relatively new.
But now Diastat has competition! In a recent study, the nasal spray Versed or Midazolam (generically known as benzodiazepine), a short-acting drug that is used for acute seizures was preferred to the rectal solution of Diastat by 16 of 21 caregivers and patients. The results were as equal in effectiveness, side-effects (usually drowsiness) and in suppressing prolonged seizures.
Other people have found liquid Klonopin or Clonazepam, (members of the generic benzodiazepinesto family) successful in preventing seizures. However, it’s important to determine the correct dose.
In short, you have these options plus a whole lot more AEDs which might help control seizure activity. Find out more about these (your pharmacist could be a terrific source because he/she’s worked with all of them before and knows the upsides and the downsides.) Because once you know your options, you can be less fearful and more in control when a seizure strikes.
Resources:
http://www.epilepsy.com/pdfs/journal/EJIS-Issue1-6.pdf
http://www.lef.org/protocols/neurological/epilepsy_02.htm
http://www.coping-with-epilepsy.com/forums/f20/hey-all-7156/
http://www.ncbi.nlm.nih.gov/pubmed/19817813
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A long time ago, I was afraid to close my eyes at night! It was do to seizures, I would have w/ my eyes closed and during dark hours. This may sound strange. It was an intense fear.
My mother would ask how do you pray and I told her I would look at the floor. I told this to my Reverand and relayed a simple statement. I learned that God is infinite, and he never sleeps, he is the one that made the atoms, and every iota of us. He has his arms around us in every situation. He told me to close my eyes during prayer. It took me a while and I noted I did not have a seizure. That year I had several status epileptic attacks. The Neurologist told me, that my fear had left. I still had serious seizures but I had recovered so quickly. The fear was lessened or was gone.
My fear was having a seizure and no one around. Once I recognized that God was with me. I relaxed. That was 41 years ago. My seizures are better. THe Neurologist that I noted you have a lot of seizures but you are more relaxed. My seizures w/ fear and spots in front of my right eye.
Comment by Toni Robison — April 23, 2010 @ 9:15 AMApr +00:00Apr
I think so very much has to do with fear and tension. I mean stress itself (which includes fear) can trigger a seizure. What your Reverend said was simply beautiful. And inspiring. You beat your fear with faith.
Comment by Phylis Feiner Johnson — April 23, 2010 @ 9:15 AMApr +00:00Apr
I am an agnostic, not a prayer, but am going to begin right away.
I had a seizure & apparently flipped my car over…..April 22nd…..in Los Angeles….at 6pm! Thankfully no one else was involved & I was the only one who ended up in ER.
My seizures begin with an electrical jolt just as I doze off. I’m scared to lay on the sofa to watch TV or to read when I lay in bed in the morning.
I have used at least nine different meds over the past 26 years. I have to admit I want the seizures to be something other than epilespy, something I can control with positive thinking. I even had a doc at UCLA tell me in October that I need a psychiatrist.
I suspect these meds haven’t worked because I didn’t want them to work. Based on what you said, Toni, I’m going to turn this over to God.
Thank you.
Comment by Cindy Lee — April 25, 2010 @ 9:15 AMApr +00:00Apr
I have a strong faith in God. That has helped me through many situations. Seizures, I believe, is one of them.
Another way I fight seizures is poetry, it relaxes me.
Just before dinner, I smelled gas. I ignored it and it went away. It was an aura. I did not have a large seizure.
Sometimes, I have panic attacks. I even wrote a poem about them. Thank you Phylis, for telling me how to overcome it.
Comment by Ruth Brown — April 23, 2010 @ 9:15 AMApr +00:00Apr
You go girl!!!
Comment by Phylis Feiner Johnson — April 23, 2010 @ 9:15 PMApr +00:00Apr
Thank you for the encouragement, Phylis.
Comment by Ruth Brown — April 23, 2010 @ 9:15 PMApr +00:00Apr
Wonderful post! I have been seizure free for just more than a year now for the first time since when I was in high school, and I almost 25.
Medication and changing my lifestyle have gone a long way to decrease the occurances, but I still dread and fear that it could happen again.
Comment by jun85 — April 25, 2010 @ 9:15 AMApr +00:00Apr
I think everyone, whether they have 5 seizures a day or are seizure-free, lives in that fear. They know what it’s like, they feel what it’s like and they just don’t want to go back there again.
Congratulations to YOU for being seizure-free for more than one year. Keep up the good work!
Comment by Phylis Feiner Johnson — April 25, 2010 @ 9:15 PMApr +00:00Apr
I dont live in fear of my seiz. I just dont like them when they cause me pain, or keep me from doing what I want at the moment. No, not fear. Actually nothing. Im not depressed of them.
Comment by jennifer schnegg — October 31, 2010 @ 9:15 AMOct +00:00Oct
I definitly live in “fear” of my seizures…not of dying but the embarassment when I have them in public. Im a singer so I was going to a club to just mingle and have my music played by a famous dj and I had a seizure. I was told I knocked over a whole table with drinks and expensive bottles of champagne. The bouncers threw me out because they thought I was drunk or on drugs. I have extreme confusion after and have “come to” across my apartment complex in a white, see through shirt and some panties, just walking. My feet were all bloody from actually walking down 3 flights of stairs uncoordinated. That is only 2 of the MANY MANY horrible experiences from this horrible thing I live with.
Comment by Camile — March 26, 2011 @ 9:15 AMMar +00:00Mar
Camille, that must have been so humiliating and devastating.
We all have our stories, (either psychologically and/or physically), and often they are painful to experience and painful to remember.
That’s why we’re here…to talk and help each other. Thanks for confiding your story.
Comment by Phylis Feiner Johnson — March 26, 2011 @ 9:15 PMMar +00:00Mar
Hi Cindy, that must have been horrible. The car accident and you feel like an electrical jolt before you have a seizure. Are you all right from the car accident?
I think positive and have a good attitude when it comes to my seizures. That really helps me get through my episodes.
Hi June, that is great that you have been seizure free for a year. I know some people who have been seizure free for 10 years. My sister was seizure free for 43 years. That gives us all hope.
With my meds and I changed my lifestyle, too. That helps a great deal in being seizure free. I also have diabetes, which causes seizures. I have to keep my diabetes under control to have fewer epilepsy seizures.
With my diabetes, I have to watch my diet and I exercise All of these are great for us.
Comment by Ruth Brown — April 25, 2010 @ 9:15 PMApr +00:00Apr
Cindy Lee, I think when you had the car accident, you probably hit your head real hard and that jolt could have either influenced your seizures or caused some other type of irregularity.
YOU MUST GET TESTED, SO THAT YOUR SITUATION CAN BE PROPERLY ASSESED.
As for testing, an EEG is not the be all and end all of testing. I know someone who had 5 EEGs before he was properly diagnosed. So know your options and read Beyond EEGs…Diagnostic Tools for Epilepsy. http://epilepsytalk.com/2010/03/31/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy/
It sounds like you’re not too happy with your neuro either. Here’s a list of neuros in California (sorry, I don’t know where you live) from eforum members of the EFA, based upon their positive personal experiences:
Dr. Kristin D. Ashley, Auburn, CA
Dr. Everett Austin, Kaiser in Redwood City. Also UCSF Epilepsy Center, CA
Dr. Robert Burgerman, Sacramento Comprehensive Epilepsy Program, CA
Dr. Robert S. Fisher, Stanford Epilepsy Center, CA
Dr. Blondell Gage, Kaiser, Stockton, CA
Dr. Christianne Heck, USC, CA
Dr. Rosalind Hsia, Sacramento Comprehensive Epilepsy Program, CA
Dr. Vincente Iragui, UCSD, CA
Dr. Kenneth Laxer, California Pacific Medical Center, CA
Dr. William Marks, UCSF, CA
Dr. Martha Morrell, Chief Medical Officer of NeuroPace, Mountain View, CA
Dr. Edwin Tasch, Kaiser, Santa Clara (Permanente Medical Group), CA
Dr. Jill Trice, Choc Epilepsy Center, Orange, CA
Dr. Calvin Wheeler, Kaiser, Fremont, CA
While you’re waiting for your appointment, try keeping a seizure diary of what happens before a seizure, what happens during it and how you feel afterwards. That will at least give the doc some idea of what you’re going through.
As for the lying down fear, I used to have it in spades, but thankfully, I grew out of it. I would wake up from sleep with the insides of my head spinning about 1,000 miles per hour. I’d clutch at my scalp, tear at my hair and cry, but there was nothing I could do about it. I couldn’t scream or yell because I was so terrified. And then as suddenly as it started, it would end and eventually, I’d fearfully go back to sleep.
I still have a seizure when I’m put in an inverted position — like at the dentist (he LOVES working on me)but that’s small potatoes compared to what I used to go through. Also, my doc gives me Klonopin to ease the anxiety of going to sleep.
Finally, if they do tell you, “It’s all in your head,” you should know that seizures that are psychological in origin are often called psychogenic seizures. These seizures are most likely triggered by emotional stress or trauma. Some people with epilepsy have psychogenic seizures in addition to their epileptic seizures. It’s a legitimate seizure and should be treated that way, but it is not caused by a problem in the brain.
Then there are physiologic nonepileptic seizures which can be triggered by some sort of change in the brain — typically a change in the supply of blood or oxygen rather than electrical activity.
So you’re not going crazy, I’ve had both. (Or maybe we’re going crazy together!)
Good luck, Cindy Lee and please address the situation and let us know how you do!
Comment by Phylis Feiner Johnson — April 25, 2010 @ 9:15 PMApr +00:00Apr
I have non epileptic seizures as well as my epilepsy and diabetes seizures. I have 3 types.
Cindy, have you asked for another doctor at UCLA? They have a vast amount of doctors. I live in CA, too. I live about an 8 hour drive from UCLA.
An EEG only shows up epilepsy if you are having a seizure during one. Ask for a V-EEG, that will show up your seizures.
I am on Klonopin, that stops seizures, like Lorazepam, right on the spot.
Comment by Ruth Brown — April 26, 2010 @ 9:15 AMApr +00:00Apr
I just thought of something Ruth. Could some of your seizures be caused by anxiety? Because my doc gave me Klonopin also, as an anti-anxiety supplement to my Lamictal…
Maybe some breathing exercises or visualization might help you.
Comment by Phylis Feiner Johnson — April 26, 2010 @ 9:15 PMApr +00:00Apr
I am glad to hear that. I do have anxiety and panic attacks.
I was put on Klonopin when it was new on the market. I was having too many tonic clonics and that stopped them.
At the time, my neurologist did not want to put me on it. He put me in the hospital and said that if I had severe seizures in 3 days, he would put me on it.Sure enough, I had severe seizures and he put me on Klonopin. I am glad it works for anxiety attacks too.
Comment by Ruth Brown — April 27, 2010 @ 9:15 AMApr +00:00Apr
I have anziety but not panic attacks
Comment by Jennifer Schnegg — September 1, 2010 @ 9:15 AMSep +00:00Sep
I had FIVE panic attacks last week. My shrink gave me a workbook on coping and arresting them.
Comment by Phylis Feiner Johnson — September 1, 2010 @ 9:15 PMSep +00:00Sep
Jennifer, you said that you have “anxiety but not panic attacks.” What is the difference between the 2? I had always thought they were the same.
I wrote a poem on my Panic Attacks last year. Writing poetry also calms me down. This whole year I have not come up with a poem.
Comment by Ruth Brown — September 2, 2010 @ 9:15 AMSep +00:00Sep
The difference is anxiety is,
well mayb a very mild, mild form of panic attacks. But its over things most people would have anxiety over. When I think of panic attacks, I think of people all of the sudden have severe attacks and heart race, and swet bad. What is clonapin? Is it a anxiety pill?
Comment by jennifer schnegg — October 31, 2010 @ 9:15 AMOct +00:00Oct
Klonopin is an anti-anxiety, anti-seizure med. I take .05 MG in the AM and 1.0 MG in the PM…along with 300 MG of Lamictal in the AM.
Comment by Phylis Feiner Johnson — November 4, 2010 @ 9:15 AMNov +00:00Nov
Maybe I should ask my Dr. about it. It might actually help me. Why did your Dr. not want to put you on it?
Comment by jennifer schnegg — November 4, 2010 @ 9:15 AMNov +00:00Nov
My doctor recommended the Klonopin + Lamictal combo. Do you mean Ruth?
Comment by Phylis Feiner Johnson — November 4, 2010 @ 9:15 AMNov +00:00Nov
I find writing poetry very soothing and cathartic. But since I write all day long, it’s sort of like a busman’s holiday.
The same thing goes for reading. I don’t read as much as I’d like to, my eyes get tired from the computer. But Arthur DID buy me a sexy new Kindle. The newst model, which is slate colored, thinner and easier to navigate.
Comment by Phylis Feiner Johnson — September 2, 2010 @ 9:15 AMSep +00:00Sep
The Bible is easy to read. That is my preference. I like to read too.
Comment by Ruth Brown — September 2, 2010 @ 9:15 AMSep +00:00Sep
I dont find the Bible easy to read. Never have.
Dont like going to church.
In a way, I am mad that God left me with Epilepsy.
Comment by jennifer schnegg — October 31, 2010 @ 9:15 AMOct +00:00Oct
Don’t be mad with God….He wants nothing but good things to happen to you. He is your source and way out of epilepsy. You are truly wrong at the wrong person. I hope you have a change of heart soon. He has not left you.
Comment by Tara Clark — November 23, 2011 @ 9:15 PMNov +00:00Nov
Jennifer, were asking me about my Klonopin?
The doctor did not want to put me on it because it is addictive. Three doctors have tried to get me off of it and I almost went into status. They no longer try to take me off of it.
Comment by Ruth Brown — November 7, 2010 @ 9:15 AMNov +00:00Nov
I’ve been on Klonopin for 2 years and had no problems at all. I think it’s just a matter of body chemistry. We’re all different!
Comment by Phylis Feiner Johnson — November 8, 2010 @ 9:15 AMNov +00:00Nov
I’ve yet to find a medication that works. I was Epileptic since 3mo old & have seizures throughout the brain. My seizure types-tonic, clonic, tonic clonic, febral, both sympol and complex partials, grandmal & status epilepticus. I have also had problems finding a doctor/neurologist that unless it’s in the ER, are refusing to see me or keep me as a client. Anybody have an idea on what to do?
Comment by Justin — December 29, 2010 @ 9:15 PMDec +00:00Dec
Welcome Justin,
First of all, the docs in the ER are not the brightest crayons in the box. I don’t know where you live but here is a link to a NEW Comprehensive list of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors, compiled by eforum members who have had positive personal experiences with these docs over the years. http://epilepsytalk.com/2010/12/03/new-comprehensive-list-of-good-neurologists%e2%80%a6epileptologists%e2%80%a6neurosurgeons%e2%80%a6and-pediatric-doctors/
Another thought is that you may try one of the anti-seizure diets which have helped those with intractable epilepsy. (Factoid, 30% of people with epilepsy do NOT respond to medication!)
Anyway, here’s some info on the diets. You might want to google them to get more in-depth info. http://epilepsytalk.com/2009/10/04/eating-well-is-the-best-revenge/
Next, try keeping a daily seizure diary, noting your sleep patterns, what you eat and when, daily activities (including emotional upsets), how you feel before a seizure (auras? triggers?), during a seizure, afterwards and the duration of the seizure. This might help you identify your triggers and give you a better idea of what’s going on with your body.
http://epilepsytalk.com/2010/03/02/common-epilepsy-triggers/
And please get back to us so we know how you’re doing…
Comment by Phylis Feiner Johnson — December 29, 2010 @ 9:15 PMDec +00:00Dec
I currently live in Oregon and have seen every Doctor and neurologist here in Oregon. I am unable to drive so my choices are limited. Surgery is also not an option, because its throughout the brain & cannot pinpoint the cause or location- I also have only had one siezure in my 29 year life time where an aura occured, or was remembered.
Comment by Justin — December 30, 2010 @ 9:15 AMDec +00:00Dec
Justin,
Have you been to Oregon Comprehensive Epilepsy Center? That’s the place that’s been most highly recommended by eforum members.
I looked at the U.S. News & World Report’s annual hospital survey and, unfortunately, it wasn’t at all helpful.
Comment by Phylis Feiner Johnson — December 30, 2010 @ 9:15 AMDec +00:00Dec
Justin,
I understand about the ability to find a good doc and the distance. I have come to find out that not all Epilepsy centers are the same. I live in Columbia, SC and am going to Charleston to check out the Epilepsy center there. My new neuro doesn’t like the one in Augusta, GA where I had a study done previously. Don’t give up! New docs move in all the time.
Comment by Tennille — January 13, 2011 @ 9:15 AMJan +00:00Jan
Justin,
I go to The Oregon Clinic neurology Dept. on Hoyt Street (near Providence). My neurologist, Dr. Gerber-Gore, is terrific (patiented-centered vs. self-centered). She was recommended to me by the OHSU Comp. Epilepsy Center.
Good luck.
Tom
Comment by Tom — October 7, 2011 @ 9:15 PMOct +00:00Oct
Well currently my wife keeps a diary for my seizures, and I have tryed quiet a lot of dietary plans. My doctor and the ER keep telling me and my wife that other than the seizures my body is in great condition and healthy. I have never had an aura, I’m in bed by 930-10:00, and up by 9am, I’m not aloud to work, drive, and after the 5th time of impact with a car in the middle of an intersection have been asked to stay off my bike. But I work out at home go for jog’s or walks with my wife. But after the last few months of my seizures and my last one, that kept me in a simple partial for five days straight then through me in to a grand-mal I have managed to get extra help. They just started paying my wife to stay home with me 24/7 to wach and make shure I dont leave the house why’ll in one, and now have me on OHP and AARP/Medicare. So as others say try and hope for the best…..
Comment by Justin — December 27, 2011 @ 9:15 AMDec +00:00Dec
The other sad have to the story, is that over the last 4 years, all the neurologist from seattle,WA down to sacramento, CA have refused to except me as a patient and will only survise me in the ER…
Comment by Justin — December 27, 2011 @ 9:15 AMDec +00:00Dec
Justin, your attitude is amazing. Why will no doctors agree to see you? There’s an organization called Free Medical Camps…you might want to see if they can help you.
Click on the link to find a location near you….
http://www.freemedicalcamps.com/index.php
Comment by Phylis Feiner Johnson — December 27, 2011 @ 9:15 PMDec +00:00Dec
Hi Justin, I am glad to meet you. I hope you get better. Phylis knows all of the best places. Keep us updated.
Comment by ruth brown — January 1, 2011 @ 9:15 AMJan +00:00Jan
Phyllis (others)
I’m on Keppra (500 mg 2x day and Dilantin 300/400 mg day) for Juvenile Myocolonic Epilepsy and generalized seizures. I had two TC seizures on Friday night after a stressful two weeks at the office (I haven’t had a TC since 08/19/2009). First one ever while sleeping. Wasn’t so lucky on the second one…dropped in the kitchen. I’m banged up, but will heal and I didn’t fall on one of our dogs. Scared my wife half to death.
You take Klonopin and 300 MG of Lamictal Phyllis. Do you mind if I ask what led you to these drugs? I think I read that you were on Dilantin and Keppra at various times, but had difficulty with them both. Anyone else experiencing similar med problems willing to share?
Comment by Tom — January 31, 2011 @ 9:15 PMJan +00:00Jan
Thanks so very much, Tom. I posted these sites before but the seemed to get lost in the shuffle.
Comment by Phylis Feiner Johnson — November 23, 2011 @ 9:15 PMNov +00:00Nov
Welcome Tom!
First of all, I suffer from clinical depression, so the Lamictal and Klonopin are perfect for me.
At its lowest dose, Lamictal is an anti-anxiety med. At its next level, it’s both an anti-anxiety drug AND an anti-seizure med. Klonopin works to deal with the anxiety of seizures…so together,they work well for me.
Dilantin made me a zombie. And fortunately, I’ve never been on Keppra. Are you on the brand name or the generic?
You might be interested in reading these two threads…
Keppra Generic Seizure Drug Contributing to More Seizures, Side Effects and Death
http://epilepsytalk.com/2010/07/17/keppra-generic-seizure-drug-contributing-to-more-seizures-side-effects-and-death/
And also, Keppra – What People Are Saying…
http://epilepsytalk.com/2010/10/15/keppra-%e2%80%93-what-people-are-saying%e2%80%a6-2/
I hope this helps answer your questions.
Comment by Phylis Feiner Johnson — January 31, 2011 @ 9:15 PMJan +00:00Jan
Does anyone have a child with Klinefelter Syndrome and Epilepsy? Keppra and natural supplements are not working well,its been almost a year since the first Tonic Clonic seizure was noticed. my email is laryan@rogers.com and would appreciate any advice.
Thank you
Lori Ryan,RHN
Comment by Lori Ann K Ryan — October 5, 2011 @ 9:15 PMOct +00:00Oct
This might be a long shot Lori, but have you seen “Three anti-seizure diets that could change your life…”
http://epilepsytalk.com/2009/10/04/eating-well-is-the-best-revenge/
Comment by Phylis Feiner Johnson — November 23, 2011 @ 9:15 PMNov +00:00Nov
Does anyone still frequent these boards?
Comment by Brandy F. — October 6, 2011 @ 9:15 PMOct +00:00Oct
Yes, 238 people to be exact.
Comment by Johnson — October 7, 2011 @ 9:15 PMOct +00:00Oct
hi i am on epilum chrono and my neuro prescribed me with clobazam and told me to take it only if i feel a seizure coming on does anyone know if this works?
Comment by Catherine Turnbull — October 18, 2011 @ 9:15 PMOct +00:00Oct
The only thing I can guess is that he’s using clobazam as a “stop gap” in case of emergency.
Seems like he doesn’t want to drug you up, which is a good thing.
Comment by Phylis Feiner Johnson — October 18, 2011 @ 9:15 PMOct +00:00Oct
I am hoping to get others to understand the value of epilepsy awareness (especially after I suffered a seizure at work and was restrained by a larger man who ended up fracturing three of my ribs). House Resolution 298 is a small step toward having a concerted effort to raise awareness without out spending public funds. Google it and consider what you can do to support the resolution.
You can contact your US representative’s office directly, or you can cut and paste the following link into your Google Web browser (it doesn’t seem to work with Yahoo). It takes minutes.
http://capwiz.com/efa/issues/bills/?bill=49573506&size=full
For a text of the resolution, cut and paste the following link into your Google Web browser:
http://capwiz.com/efa/webreturn/?url=http://thomas.loc.gov/cgi-bin/query/z?c112:H.RES.298
TW
Comment by Tom — October 18, 2011 @ 9:15 PMOct +00:00Oct
Thank you so much Tom. That’s the kind of action we need!!!
Comment by Phylis Feiner Johnson — October 18, 2011 @ 9:15 PMOct +00:00Oct
I consider my first seizure a gift from God – without it I would not have ended up dating my wife. #2 & #3 – well, the jury is still out.
I do have the intense anxiety as an aura. Happy thoughts are very difficult to summon in those moments.
As you raise awareness, remember that epilepsy is mentioned in the Americans with Disabilities Act and you can ask for reasonable accommodation.
Comment by Allen — October 31, 2011 @ 9:15 PMOct +00:00Oct
I was lucky enough to be at one of the “town meetings” with the EEOC. They were extremely responsive.
Interestingly, one man was blind and another lady was disabled in a wheelchair. That’s two out of six!!!
By the way, do you take anything for the anxiety? For example, at its lowest dose, Lamictal acts as an anti-depressant. At its next level, it’s an anti-depressant and an anti-seizure med…
Comment by Phylis Feiner Johnson — October 31, 2011 @ 9:15 PMOct +00:00Oct
Allen…Thanks for mentioning the ADA. I now have a deep appreciation for those that were on the front lines of the civil rights movement of the 60s. The employment provisions of the Americans with Disabilities Act, and its more recent Amendments are only as good as the employers who are responsible for respecting the laws’ intent…i.e., to make employment possible for those that are affected by a disability (including epilepsy). Without the cooperation of employers, workers with a disability have a choice…stand up for your rights, or be among the chronically unemployed. Take a look at the case load of charges being processed by the EEOC (go to Disabilities.gov or the US Justice Department’s Civil Rights Web Sites). It’s a sad state of affairs; almost as if the Acts themselves are ahead of their time. What did we not learn from the civil rights movement that requires us to learn the same lessons all over again for another group of citizens? Like it or not, we are a part of the civil rights movement of today. But we’re not organized, there are no clearly defined objectives and we lack the leadership necessary to gather momentium necessary to make meaningful change. So, the void means that the war drags on, and is fought continuously one small battle at a time. It takes it toll on individuals; I know, mine has been going on for a long time. And when I’m through, many others like me will have to fight the same battles with the same employer.
Effective enforcement of the ADA is a discussion that is long overdue, and without action the only apparent winners will continue to be the politicians who dust it off to celebrate its annivesary every 20 or so years. We need to do better.
Comment by Name Withheld — November 1, 2011 @ 9:15 AMNov +00:00Nov
God Bless all of you and have a safe seizure free holiday! I pray none of us have anymore seizures EVER!!! Much love….Tara NOV. 23, 2011
Comment by Tara Clark — November 23, 2011 @ 9:15 PMNov +00:00Nov
That would be something to give thanks for!
Comment by Phylis Feiner Johnson — November 23, 2011 @ 9:15 PMNov +00:00Nov
has anyone had seiz control using the atkins or modified atkins diet? Or any other diet?
Comment by jennifer — November 25, 2011 @ 9:15 PMNov +00:00Nov
Hi Jennifer, I can give you info on the three diets:
Three anti-seizure diets that could change your life…
http://epilepsytalk.com/2009/10/04/eating-well-is-the-best-revenge/
Comment by Phylis Feiner Johnson — November 25, 2011 @ 9:15 PMNov +00:00Nov
All the info on this site has been so informative and as a new seizure patient was searching for those who can relate to what i’ve beeen going thru. Wow ! and you’ve touched them all from the fear of having them to the anxiety and panic attacks. I just wanna say thanks you and this site will be frequented by me. I’m currently on 900mg of trileptal twice a day and .25 mg of Klonipin as needed .
Comment by Shantel — December 5, 2011 @ 9:15 PMDec +00:00Dec
A warm welcome to you Shantel!
There are tons more articles than those listed on the sidebar. So if you’re looking for something, try typing it into the (rather retarded) seach space or else, just sing out and we’ll try to help you.
Comment by Phylis Feiner Johnson — December 5, 2011 @ 9:15 PMDec +00:00Dec
Oh thanks Phyiis !
My seizures started with a trimmer in my right hand then dr kept increasing my meds trying to stop the trimmers but what i notice is that the last med i was prescribed (diprivex) didn’t stop the trimmers but stopped the brain from identifying it as an aura. I don’t know if i’m explaining it correctly but thats the best i can do . have any one else experienced that ?
Comment by Shantel — December 5, 2011 @ 9:15 PMDec +00:00Dec
Well, since my hands always shake, I’m not a terrific resource.
I couldn’t find the drug diprivex in research. I did find Diprivan (Propofol), which is used as a mild anesthetic.
Whatever it is, the situation sounds like a lose-lose…
Still have tremors, but without auras. And the drug sounds dicey. Have you ever considered a second opinion?
This might help:
Newly Updated Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors
http://epilepsytalk.com/2011/05/03/newly-updated-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors-2/
Comment by Phylis Feiner Johnson — December 5, 2011 @ 9:15 PMDec +00:00Dec
My name is Regina. I am new to this site and happy to share my experiences with others who are suffering from epilesy. I had seizures since I was 15. My Dr. stated he couldn’t find any sign of epilepsy after running cat scans, EEG, and other tests. However, I have still been having seizures now for 20 years. I am on Lamictal (the generic) 300 mg. I have been on a number of meds including Toprimate, Depakote, Keppra
Comment by Regina — December 18, 2011 @ 9:15 AMDec +00:00Dec
Welcome Regina!
I’ve had seizures since I was 12. They told me I’d outgrown them. Ha. I did have a period where I was seizure-free, but they came back. Persistent little devils!
As for the tests, to my knowledge, tests are only relevant if you have a seizure during the testing itself.
This link may help you:
Beyond EEGs…Diagnostic Tools for Epilepsy
http://epilepsytalk.com/2010/09/13/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy-2/
Often you need a supplement to Lamictal. I’m on Lamictal, but it’s supplemented by Klonopin. That doesn’t mean it will work for you, though.
Each of our bodies are different…and respond in their own way. I know, it took me a long time to find my “magic med mix.”
I hope you find your solution sooner, rather than later.
Comment by Phylis Feiner Johnson — December 18, 2011 @ 9:15 PMDec +00:00Dec
I need help and my doctor cannot provide it. I’ve been seizure free for over 6 months and had the VNS surger (which btw is an option if you cannot have brain surgery). I’ve had Epilepsy for the last 10 yrs. No medications have ever worked completely until I had the surgery. I still however have very regular and constant auras. They can last for hours which does cause panic, which is not good for my auras. I am in a vicious cycle.
I am only writing because I need to know if I am the only one in the world that has auras all the time and hates them. I am seriously considering just ending my life. I can’t feel this way everyday. I have the option of taking clonazepam and lorazepam which I take as much as I can, as often a can but still do not have relief for a couple of hours.
Help, anyone. I already get on my knees and pray, try to talk myself through it. I have been logging my days and activity but cannot find a pattern yet.
I will try the nose pressure thing.
One other person out there that has this creepy feeling, foul taste in their mouth, tingling hands and feet. PLEASE.
Comment by Leslie Leonard — December 23, 2011 @ 9:15 AMDec +00:00Dec
No, Leslie, No.
Suicide is NOT the answer. (Although, I must admit, I tried it myself. NOT a pretty picture, believe me.)
I know all too well about the metallic taste in my mouth. It colors everything you eat. It’s a constant reminder of where you’ve been or where you’re going. It’s disgusting.
My hands don’t tingle, but they constantly shake. (That’s why I write with a pencil!) And for every Christmas card I wrote successfully, two others found themselves in the garbage can.
Auras are ugly. They leave you wondering. And worrying. And that alone can leave you frightened.
But don’t give up. Please. We are here to help you in any way we can, to stand by you, and comfort you. Do become part of our family of sharing and caring.
Comment by Phylis Feiner Johnson — December 23, 2011 @ 9:15 PMDec +00:00Dec
Well I hope to learn something new from everyone here. I had my 1st seizure at 14 yrs old and averaged about 1 seizure per year until I was 35 at that point I started averaging 1 every two months for about a year and then I averaged a cluster of 4 every 2 months. I never had auras and almost all those seizures were in my sleep with the exception of one of the clustered seizures occasionally(the 1st one was almost always during sleep). I have taken almost every different med out there and none have worked. Two years ago we went to Mayo clinic and they told me I had been on the wrong meds for years, so they switched me to Depakote, and my liver failed within 3 months. They did find out I had sleep apnea which has been great, all those years blaming meds for making me tired when all along it was sleep apnea. I now take Keppra 3750mg/day. Obviously it does not work either I just got out of the hospital after a 4 cluster seizure last weekend.
One thing I would like to share with everyone is if you are taking Dilantin, take cacium and vit d, and get bone scans and blood tests.
I will be 40 this year and was diagnosed 6 months ago with severe osteoporosis of the spine. I fractured my spine 6 places last year one fracture caused paralysis in my left leg.
So please whatever medicine you are on make your doc do regular checks of your blood and body and question everything and anything about how you feel
Comment by john williams — January 13, 2012 @ 9:15 AMJan +00:00Jan
Welcome John,
Your story certainly sounds sad and scary.
I’m sure you’re knowledgeable about Keppra and its many side effects.
Keppra – What People Are Saying…
http://epilepsytalk.com/2010/10/15/keppra-%e2%80%93-what-people-are-saying%e2%80%a6-2/
Keppra Generic Seizure Drug Contributing to More Seizures, Side Effects and Death
http://epilepsytalk.com/2010/07/17/keppra-generic-seizure-drug-contributing-to-more-seizures-side-effects-and-death/
I took Diantin for many years and ended up with galloping gum rot and hair damage. Nasty stuff.
Dilantin – Hero or Horror?
http://epilepsytalk.com/2010/10/06/dilantin-%e2%80%93-hero-or-horror/
Your last paragraph of advice is important and essential.
My last question to you is: Have you had the correct — or enough — diagnostic testing?
Beyond EEGs…Diagnostic Tools for Epilepsy
http://epilepsytalk.com/2010/09/13/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy-2/
Comment by Phylis Feiner Johnson — January 13, 2012 @ 9:15 PMJan +00:00Jan
Phylis,
Thank you for the reply, as far as the Keppra I started on a generic and am now on the name brand. Neither on seemed to work at stopping seizures and I don’t have horrible side effects, I am definitely more irritable on the Keppra but I can control it.
I believe that I have had enough testing, I have had CT, MRI, and at least a 100 EEG’s, the CT and MRI scans don’t show any abnormalities and according to the technician performing the EEG something like 80% of those were in the normal range.
Comment by john williams — January 13, 2012 @ 9:15 PMJan +00:00Jan
Oftentimes testing doesn’t show anything unless you have a seizure at the time. (Seizure by command?)
That’s why Video EEG Monitoring and Continuous Video EEG Monitoring are favored by so many.
Especially Continuous Video EEG Monitoring…
Because Continuous Video EEG Monitoring studies the brain waves OVER TIME. This is accomplished through continuous Video EEG Monitoring, where a patient stays in a special unit for at least 24 hours.
Antiepileptic medication is stopped for the duration of this test, since the objective is for seizures to occur so the abnormal brain waves they produce can be recorded.
So, it’s less of a “slam, bam, thank you ma’am” procedure.
Comment by Phylis Feiner Johnson — January 13, 2012 @ 9:15 PMJan +00:00Jan
Part of the reason I believe the meds don’t work is over the years I have stopped the medication cold turkey for several days and I don’t have any seizures, also why I think I have some sort of non epileptic seizures.
Comment by john williams — January 13, 2012 @ 9:15 PMJan +00:00Jan
Psychogenic seizures are a possibility…interestingly, about 1 in 6 of these patients either already has epileptic seizures or has had them. So different treatment is needed for each disorder.
Maybe this will help you…
Epilepsy Versus “Pseudo-Seizures”
http://epilepsytalk.com/2010/12/27/is-it-really-epilepsy/
Comment by Phylis Feiner Johnson — January 14, 2012 @ 9:15 AMJan +00:00Jan
has anyone heard of the drug called ONFI. A seiz meds
it is relatively new one. My dr wants to try me on it. Nothing has helped so far
Comment by jennifer — January 25, 2012 @ 9:15 AMJan +00:00Jan
ONFI is another name for Clonazepam. Clonazepam is also known as Klonopin.
Comment by Phylis Feiner Johnson — January 25, 2012 @ 9:15 PMJan +00:00Jan
what do you know about the drug? my dr seems to think it may help me, there are no other options for me to try
Comment by jennifer — January 25, 2012 @ 9:15 PMJan +00:00Jan
I know that Klonopin is a godsend to me. (It’s a combined anti-epilepsy and anti-anxiety drug.)
I take one in the AM and 2 in the PM and it really helps. My doc said if all else fails, I can take a Xanax if I run out. But it’s not the same thing. Klonopin helps me sleep as well as calming me down.
Comment by Phylis Feiner Johnson — January 25, 2012 @ 9:15 PMJan +00:00Jan
it just help my generalized anxiety too. Im waitting to get prior approval from insurance
Comment by jennifer — January 25, 2012 @ 9:15 PMJan +00:00Jan
My insurance will not pay for it. How much is it without insurance? Are there any programs that will pay for it?
Comment by jennifer — January 28, 2012 @ 9:15 PMJan +00:00Jan
Yes. You have several options:
FREE Prescription Drugs
http://epilepsytalk.com/2010/10/08/free-prescription-drugs/
Epilepsy Help! No-cost or low-cost drugs and patient assistance programs
http://epilepsytalk.com/2012/01/04/epilepsy-help-no-cost-or-low-cost-drugs-and-patient-assistance-programs/
DEEPLY DISCOUNTED DRUGS WITHOUT INSURANCE
http://epilepsytalk.com/2010/03/18/deeply-discounted-drugs-without-insurance/
Comment by Phylis Feiner Johnson — January 28, 2012 @ 9:15 PMJan +00:00Jan
I will call the drug company monday, I know there is for this drug. Can I apply online? I dont see where to. The site is onfi.com. I know there is a phone number. It says they arent open saterday or sunday.
Comment by jennifer — January 29, 2012 @ 9:15 AMJan +00:00Jan
I think it’s a good idea. Call them and see what you have to do to get into the program. (I’m pretty sure that Onfi is the “parent” cpmpany.)
Comment by Phylis Feiner Johnson — January 29, 2012 @ 9:15 PMJan +00:00Jan
Jennifer,
Insurance probably doesn’t cover it because this ‘version” is so new. It wasn’t approved for the US until this year. ONFI is marketed for seizures related to LGS. Since it is a form of Klonopin (clonozepam), I wonder if a generic from another company is sufficient. That may be another reason why it isn’t covered by insurance. If there is a generic, they force you to use it. It could also be because it is a controlled substance. I think insurance companies are really working on limiting the use of controlled drugs because of the abuse problems. There are so many other treatment options for anxiety that you might want to check into. I got off clononzepam a year ago and it was a nightmare because my Dr had me on it long term (I no longer see that dr.) Based on that experience I tell everyone try other things first before going to a controlled drug.
Also, that clonozepam is used to treat a wide-variety of disorders — restless leg, anxiety, epilepsy, narcolepsy, and who knows what else a doctor is prescribing it for.
Comment by Tennille — January 30, 2012 @ 9:15 PMJan +00:00Jan
is it difficult to get off of it if it doesnt work?
Comment by jennifer — January 31, 2012 @ 9:15 PMJan +00:00Jan
You will know pretty quickly if it is effective. It is one of those drugs that your body becomes dependant on and if you’re on it for a long time some people need an increase in dose. I was on it for 5 years, which is a long time for the normal recommended time. For some, it is the best option. I wanted to get off it because we wanted to have another baby (I wasn’t on it for my first born). My boby rebelled — first with what appeared to be more seizures. Come to find out, it was seizures but also RLS coming back with a vengance (which I didn’t know I had), and cataplexy attacks which are associated with narcalepsy and often mistaken for seizures. Things are much better now, especially since I’m getting the right treatment.
The best thing to do is try it slowly (insist your doctor start you on the smallest possible dose), listen to your body, and educate, educate, educate yourself. Docs are not God, eventhough some think they are. Also, don’t be afraid to get a second opinion and ask for a few options. We don’t always have to go with the first thing our doctor says we should do. I learned all this the hard way.
I hope all this helps.
Forums like this are great for information sharing.
Comment by Tennille — January 31, 2012 @ 9:15 PMJan +00:00Jan
Jennifer, see the links above.
Comment by Phylis Feiner Johnson — January 31, 2012 @ 9:15 PMJan +00:00Jan
This has really helped me because I am looking for alternative ways to treat my seizures along with my drugs and people that understand what I am going through . Its really frustrating but I too have thought about a life ending alternative. I exercise twice a day, try to sleep the right number of hours, never drink alcohol, see a therapist, and take my meds at the same time everyday. I am on Lamictal and its been helping but not a total cure. I was thinking about trying Omega 3 in addition to my meds. Has anyone had any success with that? My memory is awful after a seizure and I do not have an aura that I know of but not knowing or remembering is because I don’t remember anything hours before and hours after a seizure. I want to see if the Omega 3 helps with my memory and helps with preventing seizures.
Here’s a strange thing though… two of my family members started having seizures about a year after I did. No one in the family have never had any. We all have the same seizures (partial seizures). No one else in my family have them besides the three of us.
I think mine are caused by anxiety. I see my neurologist on next week and I guess I should talk to my neurologist about Klonopin or Ketamine. Has anyone had any luck or tried marijuana?
I had one recently at a restaurant I don’t remember anything at the restaurant but the bartender at the restaurant had seizures and the people sitting behind me had a daughter that has seizures
I know I jumped all over the place but
Comment by Josh — January 31, 2012 @ 9:15 PMJan +00:00Jan
First of all, seizures are generally not genetic.
Just because you have a parent, sibling, cousin or aunt who has epilepsy doesn’t necessarily mean you’ll have it also.
In fact, if you have a close relative with epilepsy, the chance of you having epilepsy is only about 2-8%, depending on the specific type of epilepsy.
The risk in the general population is about 1-2%. On the other hand, there is a 92-98% chance for the close relative of someone with epilepsy to NOT have the same condition!
Is Epilepsy Inherited?
http://epilepsytalk.com/2009/10/22/is-epilepsy-inherited/
Next, Omega-3 is great. And B Complex Vitamins – are, without a question, the star. In sufficient quantities, especially those that combine B6, B12, folic acid, thiamine and biotin, are vital to the production of numerous brain chemicals.
Like the neurotransmitters which serve as the chemical message bearers between your nervous system and brain. The most efficient way to make use of this “brain food,” is to take it in a B complex form, since this contains all the vitamins in the B group. And when combined, they work synergistically together.
Brain Food for Your Health…
http://epilepsytalk.com/2011/06/21/brain-food-for-your-health%e2%80%a6/
And STRESS is #1 on the hit parade of seizure triggers.
Common Epilepsy Triggers
http://epilepsytalk.com/2010/03/02/common-epilepsy-triggers/
Also, I’m no doc but I’m on Lamictal and Klonopin (supplemented by Xanax when I need it) and for me, they’ve been a god send.
Perhaps you should keep a daily seizure diary, noting the time of your seizures, the duration and how you feel afterwards. Perhaps that will give him/her a better idea of what you’re going through.
Comment by Phylis Feiner Johnson — January 31, 2012 @ 9:15 PMJan +00:00Jan
Phylis. I do have them. I just thought it was strange that all three of us have them and they all started within a year of each other.
Comment by Josh — January 31, 2012 @ 9:15 PMJan +00:00Jan
Hi, My twin and I both have seizures. We started 1 yr apart from each other having seizures. She has auras, I dont. I have atonic seizures, She doesnt. I have dailly seizures, she doesnt. They terrify her. They dont terrify me, because, im used to them,since I have them so often.
Comment by jennifer — February 1, 2012 @ 9:15 PMFeb +00:00Feb
I agree. But I have no answer for you.
Comment by Phylis Feiner Johnson — January 31, 2012 @ 9:15 PMJan +00:00Jan
I’m afraid to take showers because of my seizures..My mom has to be in the bathroom with me just in case I fall. But if I don’t talk the whole time I’m taking the shower, I will have one and fall. Kinda weird.
But, the doctor has said i’ll probably never grow out of them…I’m still not giving up hope!!
Comment by Ash — February 1, 2012 @ 9:15 AMFeb +00:00Feb
My 2nd seizure was in the shower and it was kind of awful. (We had one of those old-fashioned showers with 4 jets on the wall and one overhead. And the door was old-fashioned where you had to slide the handle round in order to get out.)
Well, I started going down (remember, it was only my 2nd seizure) and I tried to open the door and I thought I was going to drown.
I could not for love or money open the door.
Then I thought, OMG, I’m going to die!
I threw myself against the door and happily, this time it opened.
I awoke with my head on the floor and the rest of my body on the transom and in the shower.
I was too afraid to scream…
Comment by Phylis Feiner Johnson — February 1, 2012 @ 9:15 PMFeb +00:00Feb
Im thinking about buying me a protective helmet, what kind would you recommend?
Comment by jennifer — February 3, 2012 @ 9:15 AMFeb +00:00Feb
Try this link: http://www.bhsi.org/special.htm
Comment by Phylis Feiner Johnson — February 3, 2012 @ 9:15 PMFeb +00:00Feb
I was at hospice today volunteering, when I fell and hit the cart behind it and got me a nasty bump. Fae, the head of it insisted, after many trys to go to the emergency room. I went. I told her that I didnt know how much of the insurance will pay for the rest. She said to not worry about it. It will get taken care of by hospice, with the rest of it. I told her that I will buy myself a helmet to wear, so that I will wear. I’ll probably buy the same one that I had, from when I used to wear for work. Stupid me, I had tosed it after I was let go from work. It was called the Danmar, hard shell helmet with the thick spungy padding on the inside. I will probably buy the helmet covering from Lyrca helmet helmet covers. Then make more of my own. Well good night.
Comment by jennifer — February 4, 2012 @ 9:15 AMFeb +00:00Feb
Oh Jennifer, just when you were trying so hard to
find opportunities to volunteer.
Do what you must, but don’t give up, please.
Comment by Phylis Feiner Johnson — February 4, 2012 @ 9:15 PMFeb +00:00Feb
I will still be able to volunteer there. I will just have to wear a helmet. I have no trouble wearing it. I did that at my last paid job for 5 yrs. Fae is a spunky woman, she got all sorts of ideas on decorating it for the holidays. I said, “Great”! That will be fun.
Comment by jennifer — February 4, 2012 @ 9:15 PMFeb +00:00Feb
Three cheers for Jennifer! You go girl!
Comment by Phylis Feiner Johnson — February 4, 2012 @ 9:15 PMFeb +00:00Feb
I saw the Cutest helmet covers! Am hoping that my insurance will pay for the helmet. I called my insurance, and asked them. They said, that my dr needs to write a note stating that is nessessary, for my protection, since I have already fallen and bumped my head. I
I will make some helmet covers too, with my sewing skills.
Comment by jennifer — February 5, 2012 @ 9:15 AMFeb +00:00Feb
I’m sure your doc will approve it. (After all, who wouldn’t, it’s protective gear!)
And with your talent, I bet you’ll be able to take the model and make wonderful and beautiful “versions.”
Comment by Phylis Feiner Johnson — February 5, 2012 @ 9:15 PMFeb +00:00Feb
I fell again this morning. I hate it. I havent heard from my dr. if they have sent the autherization to the insurance. Im thinking if just paying for it on my own, and not know if insurance pay for it. what sould I do? Should I call the dr. again?
Comment by jennifer — February 8, 2012 @ 9:15 PMFeb +00:00Feb
I just called to see if she got the message. My folder was on her desk, meaning that she got it. The head receptionist had told me that she head heard my dr. talking about the helmet with another dr. assistant. I dont know what the conclusion was come to yet. I expect to get a call from her, today or so.
It is so hard for me to keep a diary of my days, and what goes on. The woman, that I ride with to volunteer, told me to write it as a book, and maybe I could even write a book about the life of someone who lives with epilepsy. The troubles that they face. This sounds like a great idea. I started writing this morning. We will see what comes out of this project.
Comment by jennifer — February 8, 2012 @ 9:15 PMFeb +00:00Feb
Your dumb doc probably doesn’t have any info on epilepsy helmets. Why don’t you give him this to read from epilepsy.com?
Buying a Helmet
http://my.epilepsy.com/EPILEPSY/SAFETY_HELMET
Places recommended in the article are: Danmar Products. Show him this page, so he can an idea of the prices.
https://danmarproducts.c7.ixwebhosting.com/index.cfm?pageSRC=customerCatalog&masterCat=18&subCat=#masterCat18
Also, there’s http://www.plument.com/ with a very interesting ProtectaCap which is soft and custom fitting. http://www.fallssafety.com/protectacapplus.htm
They’re more pricey. One for you would run about $228.98 (whew!)
Comment by Phylis Feiner Johnson — February 8, 2012 @ 9:15 PMFeb +00:00Feb
im so sick and tired of this dr not giving me any info on this meds, or helmet. the onfi would cost me 243 $ without insurance. At least she could tell me why it is taking her so long about letting me know something. Whether its “i dont know, or no, or yes.”
Im at the point now, that im just going to buy it and not wait for the insurance.. even though its going to cost me 153 $
Comment by jennifer — February 10, 2012 @ 9:15 PMFeb +00:00Feb
is onfi worth fighting for?
Comment by jennifer — February 10, 2012 @ 9:15 PMFeb +00:00Feb
I really don’t know.
Comment by Phylis Feiner Johnson — February 10, 2012 @ 9:15 PMFeb +00:00Feb
im going to bake something, so that I can get my mind off of this mess. I find baking theraputic. Im sorry my spelling is terrible today.
Comment by jennifer — February 10, 2012 @ 9:15 PMFeb +00:00Feb
If you ate the results of my baking you would not find them therapeutic. More like DEADLY.
But I’m glad you’re turning positive into negative again!
Comment by Phylis Feiner Johnson — February 10, 2012 @ 9:15 PMFeb +00:00Feb
hi, I finally got the writen note from the dr about getting me the helmet, in the mail. Now the question is, how do I go about sending the note to the danmar helmet makers, so that my insurance will pay for it?
Comment by jennifer — February 11, 2012 @ 9:15 AMFeb +00:00Feb
you mean negative into positive, not the other way around
Comment by jennifer — February 11, 2012 @ 9:15 PMFeb +00:00Feb
Oooops!
As for the insurance company issue, the only thing I can think of is to call danmar about it. It’s probably not the first time they’ve dealt with this question. Plus, they’d be a lot more interested in helping you than your insurance company. It’s in their best “interest’!
Comment by Phylis Feiner Johnson — February 11, 2012 @ 9:15 PMFeb +00:00Feb
thank you very much. I’ll let everyone know how it goes.
Comment by jennifer — February 11, 2012 @ 9:15 PMFeb +00:00Feb