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Help, can I stil have seizures with normal EEG

So before I had my 72 hr EEG, my doctor said it could come back normal and I could still have complex partial seizures, so of course I was hopeful it would come back abnormal but it didnt.  I'm supposed to see Dr later this week but am worried he will change his mind about me having seizures.  Can I  still have normal eeg and have seizures?  If he changes him mind, what should I do.

Thanks

Comments

Re: Help, can I stil have seizures with normal EEG

Absolutely. I had a completely clean 24 hour EEG and proceeded to have SIX GMs over the next 2 years. Granted, I was desperately trying to get help for my son, who was later dx'ed with autism.

EEGs are NOT fool-proof, even the extended monitoring. They just give an idea of the likelihood of sz occurrence.

 

Good luck!

LIZARD :)

Re: Help, can I stil have seizures with normal EEG

 

I know of people who have had 5 EEGs, only to be finally diagnosed when they had other testing.  EEGs are not the be all and end all of testing.  And often seizure activity doesn't show up on EEGs, because it's happening too deep in your brain.   Here's a comprehensive list of other tests you might want to try...  http://my.epilepsy.com/discussion/988891 

Good luck.  You've got lots of company!     Phylis Feiner Johnson    www.epilepsytalk.com

 

Re: Help, can I stil have seizures with normal EEG

Hi Galaxymel,

I started having seizures 4 years ago 'out of the blue' right after I turned 24 (Im 27 now). From the day i was born my mother thought that i had some type of neurological problem because she said that I did this thing she called "tying up" where I would put my hands between my legs and pressmey legs together. She had all kinds of EEGs and all that on up until I got into kindergarten and nothing was found The docs. told her that I was just masterbating. It was not until August 2005 that I want into my first ever extremly violent Grand mal seizure. Immediatly, the docs. started to do several MRI's and EEG's but like you, nothing was found. In my case, I had to be put in the Epilepsy Monitoring Unit at my local hospital where they had to induct a seizure to record one while it was happening. Once they took me complelty off of my meds. I had a very small seizure where I showed no visual sighns. It was only the actual head gear that found out where my seizures were coming from, which ended up being my Left Temporal Lobe. I was then that I was considered for surgery since I was on such extremely high doses of my meds and they were not hepling out. Also, it turned out that my seizures were the hormonal type that most women have right before they have thier monthly periods due to the changes in thier female hormones. Have faith in your docs. as they try thier best to find out where,if any, your seizures are coming from. Like me, they might just have to see your brain on the computer while you are having one. I hope things work out for you and God Bless.

Re: Help, can I stil have seizures with normal EEG

Hi Galaxymel.

      You may be having seizures, even with a normal EEG. My neurologist, who is also a professor at The Baylor College of Medicine in Houston, asked me if a couple of his students could attend my visit with him last December. I agreed hoping that they would learn some information about epilepsy. One of the questions he asked me was if I had ever had a normal EEG since I started having seizures. I told them yes, but then later had  one with abnormal readings after injuring myself during a seizure. He told his students that he was  pointing out  that someone with epilepsy could have a normal EEG.

     I know it seems odd to be wishing for abnormal readings on an EEG. Having complex partials, I did, too. I felt so relieved when I did have a test come back abnormal. It helps to put an identity to what is going on and helps me feel that I am not going "crazy", but have a physical, measurable disorder. Take care.

Re: Help, can I stil have seizures with normal EEG

Hi tlh64 could you please tell me the name of the Dr that you talk about, i would like to contact him even though I am in the UK... My husband suffered a head truama at work 6 months ago and is now suffering with episodes of feeling out of it and spaced out as he puts it and also goes through bouts of uncrontorlable twitching all on his right side.. we belive this is partial seizures but the Drs here have said they belive it to be post truamtic and is all psycalogical in nature, he had an EEG last month and that came back clear even though the strobe they used triggered on of the twitching episodes.. we are so lost and feel so alone in all this and its not doing our family with our 1 year old son any good and feel we need help and advice so would love to make contact with this Dr.

Many thanks x

Re: Help, can I stil have seizures with normal EEG

My son was diagnosed with epilepsy when he was 10 and all of his EEG's from then on have come back normal he even went into the hospital for 4 days on the Long Term Montoring EEG and they completely took him off his meds and he had some of his partial seizures but again it did not turn up on the EEG but they said because the had him on video camera also they can tell by how his physical appearance was during these episodes. They told us that it could be coming from deep in thebrain that is why it is not coming up on the surface EEG's they are trying him on a different medicines and then we go from there. We have been dealing with this for 4 years now just have faith and ask questions of your doctors. It will help you to feel more confident about what is going on with you. That is what helped my son who was giving up for awhile there.

 

Re: Help, can I stil have seizures with normal EEG

I had an EEG about a year ago and still continue to have auras (maybe 2 a month)  The EEG mainly tells where the problems (which part of the brain) is with a scar, or whatever they find .  I was connected up to the EEG machine and stayed for 7 days, only had light auras.  Hope this will be of help.

Re: Help, can I stil have seizures with normal EEG

Ok I'm officially ticked off & want to through my laptop against the wall!  I was almost done emailing you about this, halfway down the stinking page, & got cut off from it.  Lost it!!  WANT TO SCREAM! 

  Anyway, I was just saying that my seizures started when I was 3, I'm now going on 38 in July.  I have a 12 yr old son that the dr's always told me I couldn't (my angel baby).  I feel truley blessed.  My seizures were mild before having him then went into a tailspin, just crazy.  I started falling (not grand malls) just falling.  They are getting a little better now that I've started taking Vimpat about 4mths ago. 

  Back to why I wanted to e'u about, they are not always detectable.  Mine weren't, they still are not.  Don't be scared about it, they are machines-these are our brains, much more complicated-lol :)  With what we have, you've got to have a sense of humor.  When I go up to the desk at a store w/my helmet on & they ask why, I explain quickly & w/a sense of humor & they respond very cool like & I get a wonderful look.  Feels good. 

  Well keep u'r head up.  God bless.

                                                               Kimberly.

Re: Help, can I stil have seizures with normal EEG

hi galaxymel, my name is Felicia. I was diagnosed with epilepsy at the age of 10.  I am now 37.  I suffer from grand mal seizures, always have. There have been several times that I was taken in for an EEG and came back with either "there are no signs of epilepsy" or "your EEG shows no seizure activity". Talk about makes you wanna scream. Used to make me feel like I was going crazy.  You are not alone in this one. Keep your head up and have faith. God bless.

Re: Help, can I stil have seizures with normal EEG

Yes, unfortunately, you can still have seizures with a normal EEG. I've had TCs for 38 years now and don't know what the cause is.  CT scans, MRIs, PET scans, ambulatory EEGs...no abnormal results. If you don't know what's wrong, you can't fix it!!--that's what bothers me the most. All you can do is take your meds, take care of yourself and hope one day a new diagnostic test will be able to give you the answer.  Take care, Teresa

Re: Help, can I stil have seizures with normal EEG

I have had seizures for over 65 years. I have had so many EEG test that I can not even remember how many. All of them came up showing there was nothing wrong, except the last one. It showed something in the tempor(might be spelled incorred) lobe. It was my left one. I have also had a C-Scan and it showed something. I use to think I was a monkey when I would go to the doctor. They did not know or should I say they had no proof. I as a teenager did not want to take medicine the rest of my life. It was very hard on me. When I was a teen ager I must have had 11 or 12 a day. I would have a fearful oral come across me before I had one. I can remember not blanking out, but I could never talk ....then it got so I could never talk....then ....still having the oral and feeling like my heart was going to pump out of my chest....my mind would go blank, yet I never fell. After my first child I had so many a day that I was afraid to pick up my child. I use to say that I wished I never felt them coming on. This was the oral was so fearful...I was not afraid of the seizure...just the fear I had and would have the fear last after I came to. I have had grand mal also...not a lot...but did not know I had even had one when it was over.....but I know now. I still have them today with no medicine not keeping them from occuring. I have them just about once or twice a month. I am sure that after I am dead and gone there will be some kind of cure, but I am tired of being that monkey. What I take is medine that was given to patience years ago. It works for awhile...better than anything else. The best thing for me is to be out and around other people even though I might feel bad. Why? I do not know. I often feel like I am going to have one early in the morning and if I can shake it off I will not .....in most cases have one the rest of the day.  The full moon often bothers me and my period use to when I was young. I had an uncle that had them and fell from the barn and killed himself, so I always try and be in a safe place. If I am in the kitchen I will go to the living room and I must know that I can not make it sometimes and will find myself sitting in a chair between the kitchen and living room. You learn as you go what is safe and what is not.  I know I got off of the subject, but just had to write. Good luck to everyone that is fighting epilepsy of some kind or another.

Nancy Smith

Re: Help, can I stil have seizures with normal EEG

Hello everyone I've had epilepsy since I was 3 years old, I was diagnosed with having idiopathic epilepsy,  i'm now 27 years old, all my EEGs have come back normal but I still continue to

 but yet and still I continue to have tonic clonic seizures as well as partial ones and some other kinds a well, my new neurologist brought up vagus nerve

stimulation as a treatment but i'm worried that since my EEG has been normal thus far that I will no longer qualify for

the surgery today is October 17th 2013 I was admitted on Monday October 14th and so far no seizures have happend

I seen my neurologist  last on September 12th 2013 and at that appointment he showed me my MRI which clearly showed 

abnormalities in the left temporal lobe area so my concern is that since the EEG is showing normal I wont get the surgery I have taken so many anticonvulsant medications and for once i want to be given the chance to try something new so I hope that I can get the VNS because I'm tired of all the drugs and there side effects I want a chance at a better quality of life for me and my children I've taken so many drugs and its time for a change I believe vns is the best treatment for me. So im praying that the MRI scan is enough for my neurologist to convince the bored  of neurologist that the vns surgery could help me and that I would be a good candidate for it, plz friends pray for me :) I see my neurologist again this Tuesday October 22nd 2013

Re: Help, can I stil have seizures with normal EEG

Hello everyone I've had epilepsy since I was 3 years old, I was diagnosed with having idiopathic epilepsy,  i'm now 27 years old, all my EEGs have come back normal but I still continue to

 but yet and still I continue to have tonic clonic seizures as well as partial ones and some other kinds a well, my new neurologist brought up vagus nerve

stimulation as a treatment but i'm worried that since my EEG has been normal thus far that I will no longer qualify for

the surgery today is October 17th 2013 I was admitted on Monday October 14th and so far no seizures have happend

I seen my neurologist  last on September 12th 2013 and at that appointment he showed me my MRI which clearly showed 

abnormalities in the left temporal lobe area so my concern is that since the EEG is showing normal I wont get the surgery I have taken so many anticonvulsant medications and for once i want to be given the chance to try something new so I hope that I can get the VNS because I'm tired of all the drugs and there side effects I want a chance at a better quality of life for me and my children I've taken so many drugs and its time for a change I believe vns is the best treatment for me. So im praying that the MRI scan is enough for my neurologist to convince the bored  of neurologist that the vns surgery could help me and that I would be a good candidate for it, plz friends pray for me :) I see my neurologist again this Tuesday October 22nd 2013

Re: Help, can I stil have seizures with normal EEG

How many of us have heard: “Your EEG is normal. You’re fine..” (“It’s all in your head?”)
I know of people who have had 5 EEGs, only to be properly diagnosed when they finally had Video EEG Monitoring. So if someone is trying to pass you off or is ignoring your symptoms, perhaps you should become a little more familiar with your diagnostic options…

Beyond EEGs…Diagnostic Tools for Epilepsy

http://epilepsytalk.com/2010/09/13/beyond-eegs%E2%80%A6diagnostic-tools-...

Phylis Feiner Johnson
www.epilepsytalk.com

I freaking love you all!

Thank you galaxymel for asking this question! I was starting to feel crazy! I have had two normal EEGS and I'm not about to let them give me another one. Sleep depravation the seizures no thank you! They tried to tell me I was have pseudo seizures! ha! They gave me some keppra and I haven't had a seizure since then. Its only been a few weeks but I won't give up! I have come to the conclusion that these doctors are practicing medicine and NONE of them are God. I hope its ok to say that I am praying for you all!

 

Mollz

Why a mri of the back for

Why a mri of the back for grand mal seizures

hello, my name is veronica

hello, my name is veronica and from USA. i just want t say a heavy thank you to Dr agbodo who with his spell power got me healed from my 13 years epilepsy problem. it started a long time ago after i had an anccident.after the accident i found out that i was now having seizure. I have done a series of test and and i have treated it in so many hospital butcould not find a solution to it. But today am totally free from this problem with the help of this great Dr. who with hisspell power cast the spell of epilepsy and after that all i have been suffering from the past years came to an end. alli provided was the money for the items and that all him charge me. But i have assured him that i we not rest until the whole world knows how greatly him has help me.if yo are having seizure of any type just contact him. Here is his contactdragodo2@gmail.com

I'm glad someone asked this.

I'm glad someone asked this. My daughter has been having seizures and the doctor seems to look at me like I am crazy. Between this and a friends on facebook things are finally making sense.

See I'm having the same

See I'm having the same problem. All my eegs including the 72hr one came back normal and now she wants to take me off the med and say it's just horrible migraines. But I'm having deja vu  episodes too. And all the syptoms of complex partial.

Glad to know that I am not

Glad to know that I am not alone.  Dr can't find the seizure on his tests so therefore they don't exist. Something sure as heck was existing in my body 6 times today.  So frustrating.  Help!

Hello I'm new.to seizures.. I

Hello I'm new.to seizures.. I'm 27 and had my first seizure June 26 I was rushed to the hospital where i had a CT scan blood work and MRI done all came back normal my neuroligest said he wasn't putting me on meds cause its the first one I've ever had I also had a clear eeg.. well I had a second one Monday Aug 22 now I'm on meds and going for another MRI... my mom has epilepsy I'm very scared and worried

I am having the same thing.

I am having the same thing. My neurologist said that it is classic signs of absent seizures but didn't prescribe me anything new because he was already putting me on Topamax for my migraines. He told me that Topamax is also used to control absent seizures as well. He ordered an EEG but I was already on the Topamax during the test and it came back normal. I'm at a loss also but at least he did say that I was having the classic signs of them. I will get really foggy headed, confused, like zoning out in a daze really. Then after wards I am exhausted. Hope this helps.

I am a 19 year old female and

I am a 19 year old female and for two months now, I've been getting these episodes that my neurologist thinks is a cross between seizures and syncope--but she isn't completely sure what they are. I lose motor function and am not able to respond or move. However, I am completely aware with what is going on around me during these episodes--I can hear everything and if my eyes don't close themselves, I can see everything. I don't get confused, I just simply can't respond. When they first started, they would only last 30 seconds to 2 minutes. But now, they last anywhere from 5 minutes to 16 minutes. My warning signs before I get them have become less noticeable and I collapse now (I've collapsed on to the floor 4 times at work now). My warning signs are extreme dizziness, a hot flash, and recently I've begun losing feeling in my toes. Every test they have done has come back normal--MRI, EEG, EKGs, CT scans, constant blood work. I even had a doctor ask me if I was making these episodes up in my head. They put me on Keppra, but it hasn't stopped the episodes and I have almost every side effect Keppra can give you. They are currently switching me to Lamactal. If this medicine doesn't help, they are going to admit me in the hospital for 3-5 days to see if they can catch an episode while I'm fully hooked up. But as of right now, the cardiologists have been a joke and my neurologist is basically taking shots in the dark. Is there anyone who has an idea with what's wrong with me? 

Hey, Jonna! I've actually

Hey, Jonna! I've actually been diagnosed with Psychogenic Non-Epileptic Seizures--it's actually a depression/anxiety disorder where your body absorbs your stress and turns them into seizures. They are very real seizures, but they aren't caused by abnormal firings of the brain. It is actually the most misdiagnosed condition because it can only be diagnosed by an epileptoligist who has access to an EEG-video monitor (1 in 5 people diagnosed with epilepsy actually have PNES). This also could explain why you were paralyzed--stress can do a lot to the body. It's definitely something to look into! I hope you get this figured out. I've only had this for a few months and it's taken over my life. I can only imagine what you've been through. 

Pseudoseizures or

Pseudoseizures or nonepileptic seizures diagnoses are all the rage with neurologists. If an EEG is negative they say the episodes are psychogenic. Meaning the seizures are a function of severe neurosis or hysteria. If these purported experts are to be believed hysteria is now rampant in those who seek neurological workups. t is total incompetence. They assume their technology is 100% accurate which it isnt. Far from it actually. Lots of false negatives (epilepsy that is geniune is not diagnosed) and blaming of the patient. It reminds me of how the experts back in the day were convinced the cold aloof mother caused schizophrenia and autism. Do not accept a diagnosis of nonepileptic seizures. Neurology, as it rates to epilepsy, in its current practice is a travesty. When they dont have a test result to tell them what is going on,  they turn and point their finger at the patient; Its your neurosis that is causing these episodes that are dictating your life. Its crap people.. utter crap. Most neurologists have no clinical skill, rely exclusively on tests that have known limitations!!!, and ignore solid neurologic evidence that cannot be feigned either consciously or unconsciously (e.g. disconjugate gaze). Get anticonvulsants from your primary care provider. 

You have dysautonomia and

You have dysautonomia and possible small-fiber neuropothy. You should also look into Mast Cell Activation disorder. Your Mast Cells are “acting badly” due to another underlying cause. 

I know I'm late here, but I

I know I'm late here, but I need some input.  For backstory, when I started having partial seizures, I was having them 3-5 times a day.  I didnt get medicated until maybe 2 weeks after the first one.   I just had a "72 hr" EEG and the doctor with me was not my neurologist.  I told them my partial seizures seemed to be getting worse in intensity (during one I actually thought my body was on fire and it was extremely painful).  The three days I was there, surprise! No seizure.  The day I was to leave, the neurologist overseeing me said that I definitely don't have epilepsy and these episodes must be caused from the keppra....but how if I wasn't on keppra when they started happening.  I'm just getting frustrated here because I feel like they aren't believing me and are only relying on tests.  Any advice?Thanks

Help...i am engaged to a man

Help...i am engaged to a man who not even 3 months ago was healthy and holding full time job...now he is having recurrent seizures that leave him with paralysis and inability to talk...nothing showed on eeg so neurologist says theses seizures weren't real! We have gone from salsa dancing to me being his caregiver...any suggestions please...i know there is such a thing as conversion disorder at times from ptsd (military related plus brain injury) but he is also hypoglycemic.  

Hello, I am 19 years old and

Hello, I am 19 years old and I was diagnosed with Epilepsy when I was 16. Medication was controlling my seizure for almost 3 years but then when I turned 19 everything changed. I started having this "phase out" episodes where I space out and don't answer anyone if they are trying to talk to me. When I come to I can't talk for a couple of minutes and I have no memory of what just happened. My neurologist started increasing my medication and it has started working, these episodes starting become less severe as the medication was in the process of being increased and then the episodes stopped happening all together for 10 weeks. I had another episode last night though because I forgot to take my medication on time so would that explain why after all this time with no episodes happening i had another one? Also why did my medication stop working after almost 3 years? I also went to see my neurologist a couple of days ago to see him about my new EEG results. When I got the results it showed no epilepsy activity at all unlike the ones I had when I was 16 where they did. When I asked my neurologist he said that he and the neurologist at the hospital had no clue what this meant as they were expecting to see activity. Do these new EEG results mean anything important? For example, have I grown out of having epilepsy? 

Hello! I’m Kayla, I’m 20

Hello! I’m Kayla, I’m 20 years old and a pretty healthy girl. The only thing I have had medically wrong is I’m hypoglycemic. Everything’s been fine up until a month ago. I had just woken up at 6am after a late night with friends and I was super thirsty so I went to get a drink and started my “normal” twitching. (I have always done this twitching every morning and sometimes when I shower I never told a doctor because I thought I was crazy) so what I remember is going and laying back down in the tent -we were camping- but my boyfriend turned the corner and saw me in the fire pit having a seizure. So he didn’t know what to do and took my home to his mom and no one thought anything of it. I was confused and scared when I woke up because I had no recollection of what had happened and I was extremely mad I wasn’t taken to the er, I set up a doctors appointment and the doctor told me my blood test came back fine and sent me on my way. Flash forward two weeks and I have another one, this time while driving. I had woken up late for work so i threw my uniform on and rushed out of the house. I wrecked my car and have no rememberence of this one either. I thankfully walked away from it no one hurt but I was a little sore. I was rushed to the er and they did the same tests came back normal so she had me set up a neurologist appointment. I still haven’t made it to that one yet it’s in July but I’m so scared. Every time I have one I wake up completely disoriented and so scared I just want to know that I’m not crazy. Please help. 

Hello! I'm am Evelyn,  I'm 57

Hello! I'm am Evelyn,  I'm 57 years old and feel like crap, Mentally..I have been having seizures since my early 20s. Never been to a Doctor for them tho.  I have Lupus, Rheumatoid Arthritis and Fibromyalgia. I started passing out several weeks ago for unknown reasons. Started having memory issues around the same time (worse than normal for someone of my age). Went to see my new Doctor for this and she ordered many tests. While leaving the doctors office I passed out and had 3 seizures which put me in the ER. ALL my scans came back Normal, even my EEG. My memory has gotten worse, ie: forgetting my Grandchildrens faces, names, feeling like I'm checking out in my head. I feel like I'm a spectator watching out thru someone else's eyes. Like I'm behind a window watching myself going thru the motions of someone else's body. MANY times I can't remember how to spell simple words or how to think past the first step if trying to do simple tasks that I have been doing for years....I space out and can't figure out how I got to a certain place. My kids tell me they will be talking to me but I am "gone" .Have Apps with Neurologist and Rheumatologist and of course the appointments are many months away since they are booked out. I'm not on any kinda seizures meds since they cannot figure out why this is happening....WORRIED I'm gna "wake up" in some Cornfield....

My 16yr daughter has been

My 16yr daughter has been having seizure like episodes since May that include shaking of the eyes and left hand shaking decrease in oxygen levels and sometimes rapid breathing along with clammy sweaty hands. I notice they always come on when she is relaxed  or she will be fine and then she gets super sleepy then she has one.my daughter  has fainted 2 times and actually stopped breathing for a minute.  911 was called and she spent a week in hospital. The 1st EEG she had was 45 min . Results came back with slight abnormalities.  She was then put on Kepra taking a total of 3 doses before the Dr took her off. Dr siad if it were seizure the meds would have worked. She has had a total of 4 EEG 2 MRI  and all coming back negative.  So they said it was in her head she must be depressed or have high stress or anxiety. I took her to a psychologist for counseling , her symptoms seem to slow dwn, but then restarted. She went 1 month with no episodes and now they are back, and coming with a vengeance in her sleep. The other night she was happy and played next to me asking to rub her head next thing I knew she was having one after 15 min I called 911 ,as to what they saw they believed she was having a seizure. I can go on forever . I'm now a lost mother not knowing what to day a scared she will stop breathing in her sleep and battling if i should put her on seizure meds to rule out frontal lobe sz. Can someone Plz HELP US. Oh and she always gets bad headaches after and never remembers.  She also states that she feel like shes losing her mind.  Not during but just as we are having a conversation.  Sometime forgetting.  Thank u 

My husband has seizures and

My husband has seizures and were been in the hospital lil over a week cause of his seizures . I'm so sleepy and can't get no sleep vagus of it. All his test shows negative and still don't know anything over his eeg yet . theft changed his meds. And up his meds he has grand ma seizures and stressed induced. I dont know what to do I'm falling apart . I love him so much. He on keppra and vampat

This is so me I'm now 33

This is so me I'm now 33 still have some issues 

Iv have the same issue, I

Iv have the same issue, I have had 3 to 5 eeg test, all come back good. still having seizures. now on 4 meds. around 4000mg a day, only having like 1 seizure a mo now. was having 1 or 2 a week. My family doc said eeg only show seizures if you have one at time of test. if i dont have seizures why dont they take me off the meds? Very confusing. 

Greeting My name is sarah

Greeting My name is sarah umah from toronto i want to testify how i was cure from epilesy by great ezaza walter, i have been suffering from epilepsy since i was 15 i have try all means to get it cure but there was no positive result and my parents have both try their best and have spent all the money they have to try to make sure i am cure from the shameful illness but it seems as if all effort was wasted. and i have given up because it usually disgrace me always and i wanted to take my life because it was so shameful for me until i came across this email greatezazawalter@gmail.com where someone testify that he was cure from epilepsy by great ezaza walter i never believe but i decide to contact him but i was very scared if he is not a scam,i took courage to contact him and told him my problem and he told me that he could cure me from epilepsy within 7 days with his roots and herbs i never believed he gave me and instruction which i followed and today i am free from epilepsy all thanks to great ezaza walter for taking this shame away from me.if you are passing through the same problem which i pass through i will advice you contact great ezaza walter via email:greatezazawalter@gmail.com or via  whatsapp:+2207679252 because only him can help you get cure your epilepsy completely with his roots and herbs.

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