Diagnosed at age24 with a 5 mo old son :-(

[wendyleigh25]

Hello everyone! I have been involved in a forum group before and found it very helpful as I am sure this one will be too. My last one was because we (my husband and I) were trying to conceive and we were infertile so fertile thoughts was the last one and only one I have belonged to.

Any who...this is my story...sorry if it bores you. It has been quite tramatic for my whole family especially my husband and I and I am sure my little boy too he just cannot vocalize it yet to me being he is only ten months now. This all started on August 8 of this year. It was my typical day. My husband and I own a fruit retail stand but we were off that day so we asked his mom and neices and nephews to go eat with us at my fav restaurant. We are truly their best customers. 2 out of 4 of my seizures have been there and no its not the food or air there we just go ALOT!

Well we were about to get our food when I fell over onto my husband. He looked at me and said what are you doing. I did not respond of course and then I fell to the ground and started convulsing. He called 911 immediately. The next thing I know there are paramedics over my head and asking me all kinds of questions. Lots I did not know! Who's the president? Come on guy I just had my first seizure! Ask me an easy one. Well thats easy in the right state of mind. Anyhow long story short I go to ER they released me hours later since it was my first one and I had another in the parking lot! They wheeled me back in on a stretcher...next thing I know I am griping and saying I thought yall said I could go home. The dr said you could have but you had another one. I was now really freaking out in my head. I had no warning of either of these two seizures. None whatsoever. Well they put me ICU for the night then released me the next day.

I was put on lamictal,dilantin,depakote,keppra,topamax. I had allergic or just bad side effects to them all. Two months later I had another seizure. Oh during all this I had EEG's done and they came up with juvenile myoclonic epilepsy (a genetic form of epilepsy). They said its very rare to get it in your 20's but it can happen. Nothings impossible I guess. Then after that seizure I had another one six weeks from the last one. They keep getting shorter and shorter between periods when I have one.

Well each time I would have an allergic reaction to a medication I would fight that much harder to get this vagus nerve stimulater put in. I want many more children. I am only 25. I had a b-day recently. SO I want more kids and with this VNS the hope is that I can be on zero medication or very little. It was one heck of an ordeal to get this put in. I have seen so many dr's: neurologists, neuro surgeons, pain management, primary care, epileptologists, ear nose and throat dr. He was the one who finally agreed to put it in but said I had to consult with a neurologist that he worked closely with. The neurologist agreed to let me get it done. I love him for this and so far so good.

It has kinda made my asthma come back but its well worth it. I am on a very low dose of klonopin mainly for anxiety but it also helps with my seizures cause one time I stopped it and had a seizure. Well thats my story. Hope it was not too boring. I am just having a very hard time coping. We now have to have a nanny. I cant drive and I have debilitating anxiety thinking I will have a seizure. My last one hurt I was in wal mart and fell straight back and hit my head. I hurt for a full ten days and got a concussion. I just need comfort and support and an ear cause my hubbie I think cant take too much more!

 

[RobinN]

I believe I welcomed you in another post, but I might be wrong as it has been a busy time with the holidays.
Welcome Wendyleigh! Sorry you had to find yourself another forum, but this is a very comfortable and friendly place. I am glad that you found something that works for you.
We are still looking for something that will work for my daughter.

 

[montse]

I hope you get better. Take care.

 

[brain]

((((((((( hugs )))))))))))

Get well soon!

 

[Bernard]

Hi Wendy, welcome to the forum. :hello:

 

[Birdbomb]

Vns

Welcome Wendy

So let me get this straight.

You had your first seizure in August, 4 months ago, diagnosed with juvenile myoclonic epilepsy, have tried only 4 medications all with allergic reactions, and now want to try a surgical procedure that is irreversible and cannot even predict IF it will even be of any help.

First VNS is ADJUNCTIVE therapy. It is meant to be used WITH medication. Some have been able to reduce the amount of medications but to become medication free is quite RARE.

Second VNS has a BLACK BOX warning from the FDA. while the generator and leads can be safely removes the electrodes that wrap around the vagus nerve are not meant to be. It is extremely dangerous to attempt removal because of damage to this vital nerve.

Third VNS device is not to be used as the first therapy. You are too new. You need to try more than just 4 medications. There are many other therapies, diet, neurofeedback etc you haven't even considered.

Frankly, if any doctor would even SUGGEST the VNS as an option this early on, I'd find another doctor.

Want to know what it's like to live with VNS? Register at my site. Plenty of different results and lots of helpful, EXPERIENCED people. You will not hear market puffery on my site. I do not accept any type of financial gain from Cyberonics nor do I allow my staff. We have no financial connections, so what you read are true testimonials without sugar-coatings.

 

[wendyleigh25]

I think you need to re read my post VNS Guru. I do now have the VNS. My dr's were VERY hesitant to put it in but I am a nurse and I am the patient and its up to me and my dr what we do. If you count Klonopin I have tried six. I am obviously very sensitive to medication in general. Plus this is genetic its not going to go away and its safer to have the vns in conjunction with a lower dose of meds than be without the vns and on higher doses while pregnant. pLUS MY pcp WHO HAS been around for a LONG time and knows alot said I might just be one of the ones who does not have to have medication with the vns. I was willing to take the chance. I handled the surgery quite well. and am handling the VNS even better. I dont know if you know this but according to cyberonics you only have had to try two medications in conjunction with each other and it not work to get this device. I went to a class on it the whole ordeal. I am very up to date on my medical stuffne I am a nurse, two I research like crazy! On all kinds of subjects. Thanks to everyone for the welcome. I do not feel very welcomed by VNS Guru. You actually made me feel very unwelcome. I had no idea a forum was supposed to be like that. I do now have the VNS and we are making the best of it. We always find the positive in the choices we decide to make in my medical health (my husband and I). He was also very for it. His family had to put down $30,000 just to get it done. The procedure costs 72,000 total Yes thats right. And I am private pay.
Thanks again to all of you!
Wendy
PS- Just out of curiosity what makes you a Guru?

 

[Birdbomb]

Just for the record, I did not call myself a VNS Guru, I was given that title by the owner of THIS site, Bernard. I think it's kind of a cute pet name so I kept it, just like his title on my site is Johnny Neurofeedbackseed.

Now down to business.

First I will apologise for offending you as that was not my intention. I had mis-read your post. I thought you had said you were considering VNS, didn't realize you already had one. How you choose to treat your epilepsy is entirely up to you.

I understand your reasons for having it. But IMHO, surgery should always be the LAST avenue of treatment.

When I had mine implanted in 2002 it was at the cost of over $42,000. I just had it removed last month and the hospital bill alone was $22,000. I still have the electrodes in, they could not be removed. Overall cost was well over $100,000. It is not cheap. There are no guarntees.

I am sorry if I came on like gangbusters. But after communicating with 1000's of people worldwide about VNS, it frightens me when people go into this treatment not fully informed. You, as a nurse, must have continuing training to keep you license, so you should know how to search out this kind of information. But unfortunely, most people don't know how and when they discover VNS can cause...

♦ Ataxia (muscle movements or twitching, generally associated with
stimulation)
♦ Dyspepsia (indigestion)
♦ Dyspnea (difficulty breathing, shortness of breath)
♦ Hypesthesia (impaired sense of touch)
♦ Increased coughing
♦ Infection
♦ Insomnia (inability to sleep)
♦ Laryngismus (throat, larynx spasms)
♦ Nausea
♦ Pain
♦ Paresthesia (prickling of the skin)
♦ Pharyngitis (inflammation of the pharynx, throat)
♦ Voice alteration (hoarseness)
♦ Vomiting
Other potential adverse events possibly associated with surgery or stimulation
include but are not limited to the following:
♦ Aspiration (fluid in the lungs)
♦ Blood clotting
♦ Choking sensation
♦ Damage to nerves or vasculature in the surgical area, including the
carotid artery and jugular vein
♦ Device (Generator and/or Lead) migration or extrusion
♦ Dizziness
♦ Dysphagia (difficulty swallowing)
♦ Duodenal ulcer, gastric ulcer
♦ Ear pain
♦ Facial flushing
♦ Facial paralysis, paresis
♦ Foreign body reaction to implants, including possible tumor formation
♦ Formation of fibrous tissue, pockets of fluid
♦ Heart rate and rhythm changes
♦ Hiccuping
♦ Incision site pain
♦ Irritability
♦ Laryngeal irritation (sore, painful throat)
♦ Left hemidiaphragm paralysis
♦ Left recurrent laryngeal nerve injury
♦ Left vocal cord paralysis
♦ Low-grade fever
♦ Muscle pain
♦ Neck pain
♦ Nerve injury
♦ Painful or irregular stimulation
♦ Skin, tissue reaction
♦ Stomach discomfort
♦ Tinnitus (ringing in the ears)
♦ Tooth pain
♦ Unusual scarring at the incision site
♦ Urinary retention
♦ Vagus nerve paralysis
♦ Weight change
♦ Worsening of asthma and bronchitis
♦ Worsening of cardiac abnormalities, including heart rate and rhythm

TRD warnings

etc and their side effects cause lifeling problems, they are very angry and rightfully so.

There are several websites that deal with only VNS but those sites recieve some type of compensation from Cyberonics. You go to those sites and this thing is presented as the "HOLY GRAIL" They are FULL of marketing puffery It sickens me to see these sleazy marketing ploys. And the sales reps are no better. Cyberonics had to pull their ad off WebMed because of FALSE statements last year. And from what I've seen of their new updated site, I have found MANY false and misleading statements.

I don't tell people NOT to get VNS, I tell people to GET INFORMED about VNS. Don't go into it lightly, research all you can, Talk to those with the VNS, both positive AND negitive. Find out the difficulties others have experianced before you make that final decision.

 

[angel]

Hi wendy,

welcome to the forum

bb what is deep brain stimulation? is that the same as vns? im asking because im getting really tired of meds, im curious about the effects of these things on the brain and the side effects they've caused people.... if you have any link i could read it would be helpful

thanks
angel

 

[Bernard]

I gave BB the "VNS guru" title because she has lots of personal experience and she has been the administrator of the most active VNS discussion forum on the internet for many years - involving hundreds of VNS patients and a broad spectrum of experiences.

She can get a bit cranky when she perceives people evangelizing the VNS. Suffice it to say that she has strong and considered opinions on the subject.

Don't take it (her response) personal. She is just trying to provide some balance to references of the VNS.

 

[Birdbomb]

 

[brain]

The Facts ... on the table

Wendy:

Bernard is absolutely correct, He's the
one who gave Birdbomb the title, she
did not impart the title upon herself,
in fact - we teased her about it.

However, SHE DOES have the experience,
She DOES have a website, and it is FULL
of people - both Positive and Negative;
if you visit that website - you will see
both sides of the fence.

I do NOT have VNS ~ but I've been suggested
to have it, and I read it and listen to the people
(and not just her website alone, but other
websites as well) .. and SHE IS ABSOLUTELY
CORRECT in regarding the FDA warning as well.

Realize this - she did not have to do this, she
did it because she cared!! She wanted people
to be informed.

Did you know she just recently had the VNS
finally removed?

NOW we need to get the HOST name removed
to be changed to Johnny Neurofeedbackseed!

I'm seriously considering a Poll!
:agree:

 

[Meetz1064]

Hi Wendy!

Well, I'm STILL running behind..........

but I just wanted to say hi, and WELCOME.....to CWE.

You've obviously met some of the gang here. :bigsmile::roflmao: You'll learn a lot here, I promise. And, I'm sure you'll have a lot to offer, too. I'll try to hop back on tonight with a proper welcome, but I have to get ready for work now.

Toodles!

Meetz

 

[stringbean]

Welcome Wendy

 

[skillefer]

Hello!

Hi Wendy!

Welcome to the forum! I'm new too. As for your story, it was quite interesting. Just a quick question...do you notice if your seizures fall during menstruation? Just curious. Mine do, and my hubby always treats me like I'm made of glass on those days. :roflmao: And don't worry....your hubby is probably stronger than you think. Just think, if you get the seizures under control, you might be able to get your license back! As for the VNS, I will admit, that I hadn't heard about it. So I learned something new. Also, don't think that just because you take AED, you can't have kids....you can. Yes there are risks, but you can. Have faith.