Health - Paroxetine and Life: Help Requested

Discussion in 'Antidepressants' started by Nagognog2, Jan 3, 2006.

  1. Nagognog2

    Nagognog2 Iridium Member

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    Feb 1, 2005
    What follows is from Zen - a new member here whom I have known for quite awhile. It is a long read, and quite involved. In a hurry? Come back later......
    Zen's words:


    Nagognog ( one of your moderators) asked me to write this in depth post on my daughters medical condition (after she was prescribed a drug called paroxetine and had a psychotic episode in less than 21 days of taking it and it was prescribed for her heart condition) and said someone out there may even have a few idea's that have not been covered and/or tested in the last 10 years so... here I go...........

    First up thanks to Nagognog for his help with info on tests and drugs!!! My daughter is currently 18 years old going on 19. Nag has been been deciphering medical jargon for me for a few years now.

    Nag said start at the beginning so..........normal pregnancy....normal natural birth after a very short labour of 1 and a half hours.... ( she was supposedly 5 days overdue) one older brother (he is 4 1/2 years older and he was allergic to the world...dust, cats, bees you name it, he was even allergic to pet birds we found out later it was the mites in their feathers, chronic asthma and constant chest/lung infections) Daughters only known allergy is to penecillin ( and

    She was late to start teething... 9 months, late to start walking ... 14 months and late to start talking, but was totally toilet trained by 18 months, also surprisingly fairly quick on the uptake {since she was so slow on the normal stuff} if her brother didn't do exactly as she wanted by the time she was about 2 she would get the neighbours cat and put it in his room for a few minutes ( he would be wheezing within in seconds of entering his room and it took ages for me to work that one out, I used to get pissed at him for going there and touching it when he swore he hadn't, I thought he was lying cause I knew he loved animals but one day she got busted doing it by her godmother) she was fully immunised on schedule by Australian major childhood illnesses with maybe the exception of of a very bad case of chicken pox at 6 years old (3 years after her brother also had a bad case of it and they were joined at the hip back then and she didn't get it when he did which I thought strange since everyone he touched that hadn't had it, caught it).

    At 8 years of age in our early summer she started getting sent home from school with what they said were fainting spells, they got so often I took her to the local ER and asked for her to be checked out.........they immediately thought epilepsy, I said no as I grew up with friends and a cousin (non biological) who were epileptic and by this time I had seen a few of her what I will call "attacks" and they were not pedi mal or grand mal ceisures which I had seen all my life. Not sure if this is pertinant but at this stage she was also very accident prone.......broken legs and arms and splitting her head open etc but at that time she was also very sporty, played field hockey and basketball and volleyball, roller derby, inline skating which back then had just come out here and wanted to play inline hockey.......(Nag did say include everything that crosses your mind)

    The Doctor (our ER and Casualty is different than America I think, it's our free public health system where most go for anything and we pay for it in our taxes, very similar to what Canada has so I am told) blew me off and told me to stop worrying until... her school sent her to the same ER a few times by ambulance after she passed out in class. About five "attacks" later that same doctor said we have to do something she is a normal healthy child but she passes out for no reason ( he wasn't telling me anything I hadn't worked out for myself). That doctor was so sure it was some form of epilepsy and he sent her for mri's and all the epilepsy tests which come up blank, then he said it's stress...........I said stress???? she is 8 years old for gods sake what does she have to be stressed about. We went round and round in circles for about 2 years with neurologists. At this stage I noticed her attacks were more frequent in summer than winter and from age ten and half to 12 she had not one (well not one that I know of, sometimes still to this day she hides them from me, she figures it will mean more tests or needles or something she really doesn't want if I find out). I used to keep telling her I just want her fixed/better/normal etc. Now I am on her wave length enough is enough it aint gonna kill her even the big wigs have said they are just trying to lessen them since they can't figure the exact cause.

    The attacks were very infrequent until she turned about 15 ( and between 10 and 15 we moved up and down the queensland coast a few times, pretty much never ending summer but different humidity, we don't really have a winter here at all) and we're always in summer. By the time she hit 16 they were constant and had changed. Both she and I could tell when she was going to have could see the change coming on..........she would go white as a sheet from her hairline this stage she would still be relatively coherent and say Ma I need to sit or something and in most cases if a chair wasn't available she would lay on the floor herself before it actually happened. Just before and during she was very blue around the mouth (lack of oxygen)..usually within 20 minutes of her coming around you would not have even known she had one. Most times the whole "attack" took and was over within 5 minutes from start to finish. Sometimes she was a little vague (spaced out) when she come around for a few minutes.

    4 to 6 weeks after her 16th birthday she had what I still term the worst attack. I worked all different hours and didn't get home til about 3am that time but am a light sleeper thank god. At around 6.30/7am I heard her yell out... not loud........but louder than usual Ma come here I feel funny........Then like a screech, MA.......I raced out out of bed and heard the shower running so run straight to the bathroom and got the door open just in time to see her go crashing face first into the side of the bathtub and before I could do anything she had hit it so hard it flipped her over and the back of her head hit the tiles on the floor and she started convulsing, I rang the ambulance and it took them about 15 minutes to get here, she was still convulsing when they did. When she come around she started screaming about the pain in her head and after what I saw I couldn't fault them for sending her back to a neurologist for more epilepsy tests. (I have found out since any major bump to the head can cause convulsions and she had 2 major ones within seconds of each other, hairline fracture of the eye socket from the frontal assault and concussion from the back one, which I guess explained that original ceisure). Since the bad one her regular attacks last about 15 minutes instead of 5, and sometimes longer if she convulses ( since then convulsing when not hitting her head has become fairly regular).

    For the next 8 months we did the rounds with tests and more tests until while during an ultrasound of her lungs or something and somehow the ultrasound got run over heart (she was slicked up with the gel from shoulders to pantie line so I still am not sure what exactly they were looking for but I took it as lungs because of her blue colour and lack of oxygen during her attacks which by that stage was the only constant thing in them) and they found something. (and all hell broke loose and I got thrown out of the room)

    Within an hour she had an appointment in our state capital to see a cardiologist. I was eventually told they had found a defect in one or more of her heart valves and it was explained to me as.... because of this sometimes her heart doesn't beat properly and she loses oxygen to the brain and blacks out, that is the bodies way of self medicating this condition, it shuts down and fixes itself and while she is out cold her heart beat returns to normal and starts pumping oxygenated blood where it should again. When she first saw the cardiologist they were talking surgery first through the groin with a wire and balloons or something up into her heart, it has name but I can't think of it at the moment. Then they talked valve replacement surgery.........all of which have since been scrapped..........

    They tried to make her have an attack with tests and drugs and she didn't, then they gave her a heart holter for a month... DURING OUR WINTER (when she is usually A OK) and didn't record anything except a few cardiac arythmia's. They ended up prescribing her Noten (altonolel...have to check spelling ) which Nag told me is a beta blocker and she already had low natural blood pressure.....turns out after 8 months when we come back into the worst of our summer it all started again and hadn't done shit for her and they thought they had cured her! They decided to scrap the valve thingy and just say she has cardiac arythmia and I am to say that when she has a bad attack so they hurry ( the paramedics to hurry I mean, since they know after all this time I don't panic at the average stuff I just wait til she comes around and ask if she wants her bed or doctor or whatever).And boy has she freaked a few paramedics out over the last few months, she went over 20 minutes in arythmia and they are sposed to shock you to get sinus rythym back after 20 minutes or you can get brain damage... so the freaked out paramedic told me... that are 20 totally accounted for minutes of arythmia in there presence, the paramedic went to put the paddles on her and she said NOOOOOOO...this is normal, he was still freaked about that when they got to the ER.........I had gotten a call from work as well as them for that one and I said I will meet her at the ER and I was waiting..........according to the paramedic she had been in arythmia for over 35 minutes that he had clocked but she had regained consciousness as he was pulling her shirt away and putting gel on her for the paddles and she told him no that she fine and not to shock her........and I have literally seen her heart beating like it was bouncing out of chest when she comes around to......and he was seeing it on his machines but he had never seen anyone that could talk during what he was looking at so he freaked...

    So.........when it all started up yet again ( after that freaked paramedic and ER nurse and doctor) they turned around (after yet another trip to the state capital and the cardiologist and we live 6 hours north of there by the way) and prescribed her a drug called paroxetine an anti depressant (and started weaning her off the noten .......going cold turkey causes heart failure and/or a heart attack)......I was like anti depressant WHY WHY WHY..I was told by her cardiologist that it does something with the seratonin levels in her brain and would make her heart pump regularly and hopefully stop or at least lessen her attacks. I read the little facts sheet in the original box of it and busted my butt getting onto Nag and asking his 2 cents worth on it.........what he had to say wasn't good and thankfully I had forwarning of what was about to happen because of Nag.

    Less than 21 days on this Paroxetine she had what the local ER doctors and paramedics called a psychotic episode, and she really did go, for want of a better expression apeshit she went totally nutso ...... it all started almost an hour before that as close as I can figure......I finished work at around midnite and her father was asleep and her boyfriend was waiting for me when I got home from work and already told me he was worried ( they have been together almost a year so he knows what is normal and what is not when it comes to her "attacks").......I asked her are you ok and she said I feel funny but not my normal funny I already did that....meaning she had passed out and come around but yet she still felt funny....that is unusual even though I have seen her have 3 attacks in one 24 period they are very seperate and she is normally fine in between. She said I am so tired but kind of hyper like a ADHD kid that got fed red cordial and I have a blinding headache that I just can't shake, it's like someone is driving a knife through my skull and twisting it....a hot burning knife......she had actually described that headache before several times BUT previously only after she had hit her head and had a ceisure and her boyfriend assured me she didn't shake when she was out and didn't hit her head ..they had been laying in bed watching a movie in a nice cool air conditioned room for a couple of hours before anything happened.

    THE PSYCHOTIC EPISODE I hide pain meds from her because once she took like 10 paracetamol without anyone realising when she couldn't shake the pain. I asked if she wanted to go to the doctor and she said no I just want to sleep so I gave her 2 nurofen plus (her normal GP said they were fine in moderate doses but not to leave them laying around after the paracetamol episode) nurofen plus are a mix of ibuprofen and codiene. She said you go to bed I will try and sleep now, so I had a shower and went to bed.....about half an hour later her boyfriend come and woke me up and said can you come here......I said what's up and he said she is acting really funny.........I said probably her headache but the nurofen should have kicked in by now, he said I think it did she was out like a light for about 10 minutes but now she is like rambling and when I asked her if she was OK she hit me and then when I asked if she wanted you she said yes and started crying, then she grabbed her head and started making a funny I went in and said do you want to go the doctor she said yes but you will have to help me I'm not good, and really started crying ( and that was funny to me as she is not a crying person, tears are something that just aren't cool in her book)....I said ok I will go get the car and told her boyfriend to get her shoes and handbag (she carries all her medical stuff in her bag in summer) I moved the car as close as I could to the front of the house and got out to open the passenger door to make it easy for her to get in............I heard someone yelling and screaming and I was thinking damn nieghbours, it never occurred to me it was coming from my own house until I started back up the the time I got back into her room her father and her boyfriend were holding her down, she was going nuts and they are both big boys and were having trouble holding her and I rang the paramedics....when they arrived (maybe 15 minutes) her oxygen sats were at 30% and Ben ( he has been here before and knows all about her and what happens, he even freaked at what he saw) as they kept her down he gave her oxygen and you could see her colour returning and also tell she was calming down, he said you know who I am and she still couldn't talk but I could see with the oxygen she
    had improved and was lucid again but still gasping for breath, she sort of nodded and he said I am going to put the patches on to do an ecg ok and she shook her head and tried to shake her father and her boyfriend off.....I said let her go she knows whats going on, isn't that right and she nodded, still sucking oxygen like it was going out of fashion, they let her loose ready to grab her again but all she did was hold out her hand to Ben for the patches, and he only gave her the basic 3, she kind of frowned at him and tried to do a square shape with her fingers which Ben understood give me the works it's still happening so he did......after 10 years she knows exactly what to place where.....(to do an emergency ecg here they use only 3 round patches{one around the collar bone area, one under her breast and one in the middle} but for a good one if they have time they use the 3 round plus about another 10 square ones) One thing Ben told me later was very strange she had a temperature, he said that has nothing to do with what they say is wrong with her and it went when her oxygen sats returned to normal.

    Since that night/morning and unbeknownst to me for 4 days she didn't take any meds even though she was sposed to wean herself off them all by decreasing the dosage, she apparently went cold turkey cause it scared her so much, which I found out at a teleconference with her cardiologist the following monday ( as I said we live 6 hours north so telephone is all we have for shit like this) and he tried to put her on yet another drug and I said no and her local GP agreed with me specially when he heard what there next monkey test was......a steriods.....started with F can't remember the name but commonly used with young children aged one year plus for asthma and cystic fibrosis or young children with breathing problems etc..........her local GP said it would be bad for her since she showed something in a TSE or TSH test which is something to do with an underactive thyroid and is why she is already overweight even though she is fit and healthy, he said add a steriod which makes you gain weight and it will put even more stress on her heart. So she got a reprieve and was to be off all meds til 16th of january 2006 I lost my temper and said you are through using my daughter as your guinea pig, so now she is off all meds till march 2006 when she has a consult with our top heart doctors in person in our state capital...again.... yawn.

    She has put up with this for over 10 years now and as far as I am concerned not one med they have shoved into her has ever even slightly helped.......I would love to put it down to stress or hypocondria......but she can be happy and laughing in a nice cool room and have one.... she can be laying in her bed or on the couch and have father saw a show on tv here not long ago, a girl just turned 19 had all of my daughters symptoms, been through all the same tests for years on end and what not and just weeks ago they found a part of her brain doesn't get oxygen and it's from a rare disease.I mentioned it to her doctors and the cardiologist said yeh I saw that it can't be that do you know rare that is, and her local doc didn't see it and is trying to get a copy of the show or the script with contacts about her condition...anything is worth a shot at this stage me's a long shot but hey.....

    So any idea's on anything NEW they can test my daughter for would be greatly appreciated, other than our local GP I have started to yell and scream alot with doctors, they treat us like idiots and frankly I have better things to do than ship an adult daughter that seems mostly fine for half the year around our state.............if she really was fine she would have left home ages ago but this scares her on occassion, so now she is talking of never leaving home and never having kids etc.........if I thought she was faking I would have killed her by now because I would love a life where I don't have to keep tabs on her like she was still a 2 year old.

    basic common symptoms is passing out from lack oxygen which every doctor/nurse/paramedic she has ever seen has said since she was about 12 and would explain the colour draining from her face down and her being blue around the mouth, a bit over 2 years ago she had the bad knock/s to the head and I would say these days it's 50/50 whether she convulses or not with or without a knock to the head......the attacks have also gotten longer in duration since that time.


    over ten years of this shit

    worse in our summer than winter BUT......we live in the tropics so winter is dry and summer wet more so than a real season or temperature change except for a couple of years of extreme drought when it did get really cold here ( well cold for me but not for anyone that gets snow in winter)..........when the drought broke I just realised is around when she turned 16 and really went to hell and never come back "attack" wise.

    she used to only convulse if she hit her head but now she does it without hitting her head,maybe more than 50 % of the time the convulsions seem to be increasing as time goes by, the tremors from the paroxetine which was a documented side effect not withstanding, they were a very seperate thing and she was totally coherant and conscious during them.

    she can be laying on the sofa talking to me, watching a movie or tv show she likes and have one

    the one thing that always happens is she goes white from the hairline can literally see the colour draining from her, and when you look close you can see she goes blue around the lips after she is out cold, she can obviously feel it and can't stop it, and it used to embarrass her when she had her friends around and I have watched her try and stop it, that is now when she usually hits her head as she goes down, with family she will just sit on a chair or lay down before she passes out, but the last year or so I have watched her do that and yet she still convulses, it wasn't til Ben told me about her temp which I haven't checked in years that I have started looking at that and the next 8 times it has happened she has has only had a temp twice. also once or twice lately I have noticed she has broken out in a cold sweat, which may or may not have happened before, I guess I am starting to take more notice of the little things since I don't freak out so much any more.

    Even when in what they call cardiac arythmia her blood pressure rarely goes high or even what they call normal. with or without beta blockers, I was extremely concerned when Nag told me what beta blockers do since I also have naturally low blood pressure. her normally low blood pressure was attributed for a bit to her passing out.....they ruled it out once they realised she had these attacks while laying down, for it to be her low blood pressure it would mean something like standing too quickly and a blood rush and fainting, one time she was in an extended arythmia her BP was still only like 90/60, I can remember a nurse commenting on it and asking if she had taken any drugs and I laughed and said yeh these ALL prescription and handed her the packs of what they had her on, she said I meant like exstacy or speed I said no way she isn't even game to drink........(doesn't X or lsd make your heart race?)

    I am adopted so my medical history starts and stops with me on my side and there is no history of diabetes(except adult onset from alcohol abuse), heart disease, epilepsy or anything like that on her fathers side.Her fathers mother died of cancer which started in her optic nerve and her great grandfather on her fathers side died of colon cancer.

    Both her and her brother have had benign moles cut out.

    she almost killed herself by taking an over the counter flu med...........she didn't know til she wound up in the ER and it took them quite awhile to figure it out was something to do with her beta blocker and this flu med having a tug of war with her heart so they said in the end

    lately even since off all meds which is only just on 2 weeks she is getting bad headaches, just b4 her last visit to her GP she took phenergen thinking it was paracetamol or ibuprofen ( phenergen is my antihistamine for bee stings) and she said it stopped her head hurting.her GP is actually looking into that ....I said she took 2 of them it probably just knocked her out cold.........hell I been taking them since I was kid and they still put me to sleep once the hives subside... But her GP said on the quiet to me "let her take your phenergen, even give them to her for her headaches, they will be better for her than any paracetamol or codiene or ibuprofen, and if they do work, it's either psychosomatic which I doubt after seeing her ecg's etc or I need to get onto someone to work out why it may work to stop her pain", you know maybe this could even be an allergy to something that flowers in summer or something like coral spawn in the air and that is why she is so bad in the summer

    can any of your members think of any allergy to something summery (remember we live in the tropics our muraya flowers 3 or 4 times a year instead of once....

    i can come up with a 100 allergies that present as hives or making you itchy or difficulty in breathing or even headaches but not one that makes you pass out or convulse.

    something else i just thought son used to catch everything going round and get it twice as bad as a normal it's my daughter who catches everything and then some

    something else I just thought daughter LOVES Hungry Jacks it's the Aussie equivalent of the US burger king same company to be honest just different name here..and we don't get many junk food meals like that it's pretty much something she would ask for when she can have anything she wants like a birthday treat.........we had been out half the day with her getting tests done but nothing major like the radioactive dye one or an mri or anything that would make her ill but from 9am to 1pm we were out getting tests done and she had had breakfast.I was starving and said what do you want she said HJ of course bacon deluxe meal deal in the BIG size.........sounded great to me as well I could have gnawed the tail off a dead squirrel so I got 2 and since I got one she didn't chow down on hers till we got home...we didn't make it inside we sat on the veranda and started eating....i have a big old overstuffed recliner there and she took that (she is a natural bitch) she got about half way thru her burger after demolishing the fries in about 2 minutes and had her drink in her left hand and it was resting on the arm of the chair while holding her burger in her right and was still munching on it and she in the middle of telling me something she thought was funny and stopped dead.....said ma take my drink, my left arm has gone all funny and i am gonna drop my drink on your chair....i stopped and looked and she was white as sheet, and beads of sweat were dripping down her face, where as seconds before she was laughing and joking........i grabbed her drink and as i watched you could see the lights go out so to speak you know the saying the lights are on but nobodies home....she didn't move for a bit , then her eyes closed and she slumped just the slightest bit in her chair but within 30 seconds i swear she was back and she looked at me and said fuck you should see the look on your face and laughed, then she said ouch my left arm hurts i can;t it move properly it;s still all pins and needles...i had her back in the car within seconds i thought she had had a stroke or something but apparently that can just be a side trip of this non life threatening cardiac arythmia they have diagnosed her with so they say......nice eh?

    Any idea's on what this could be would be much appreciated.........please let Nagognog know and he can pass it on as I am not online very much these days between work and babysitting an adult.......

    Thanx for your time
  2. Sitbcknchill

    Sitbcknchill Retired Platinum Member & Advisor Donating Member

    Reputation Points:
    Feb 5, 2004
    111 y/o from U.S.A.
    I do not have any constructive help to give in this thread but I will be following pretty close. My good friend has been having this problem with passing out in the same manner the girl above does. She has been going to docters but they can't seem to find shit. At first they thought it was epilepsy, but as of now diagnosis is unknown. This condition of my friends is really bothering me. It is some scary shit to see your friend fall to the ground and pass out not breathing anywere from 1 to 10 minutes to all of a sudden waking straight up to start crying because they don't know whats going on with their body......So far they have tried steriods for an attempted 'cure' but they just made her worse...
    Last edited: Jan 4, 2006
  3. nanobrain

    nanobrain Platinum Member

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    Apr 12, 2005
    from Australia
    i am writing a considered response, dont give up hope.
  4. nanobrain

    nanobrain Platinum Member

    Reputation Points:
    Apr 12, 2005
    from Australia
    Zen, thank you for sharing, i know how hard it is to go through the Australian healthcare system w/odd neurological ailments firsthand. i won’t waste your time going into my list of medical qualifications, except to say i have worked in the field for 20 years.

    the mode among GPs and even specialist practitioners here is to try you on the latest in vogue samples of...whatever is listed in the Australian Pharmacopoeia – the ARTG.

    guess what the prescription was for my condition which, while head pain related had nothing to do with depression or epilepsy? beta blockers, anti-epileptics, paroxetine. same as your daughter.

    now i won't go into my shpiel on the inherent negative and potentially lifelong consequences of using SSRI's, suffice to say, they should be discontinued ASAP.

    do not lose hope. for one thing, there's the TGA Personal Exemption Scheme under which you are allowed to import drugs not prescribed / sold in Australia from other countries.

    as far as your specific case – the situation is very complex and the cardio area is not my specialty, but there are certain factors i picked up, i will comment on and ask questions:

    1. hypoxia. have you tried her on piracetam (Nootropil)? if not, this should be one of your first Internet orders.

    2. severe headaches associated with hypoxia, short in duration and seasonal. this would be nothing the medical field would know about 10 years ago, but have you heard of Cluster Headaches? this is the condition that i seek respite from. some of the symptomatics sound like your daughter’s and CH certainly has a specific seasonal component. is a good place to start looking.

    now, i know this sound stupid, but for immediate hypoxia relief, have you been prescribed / considered OXYGEN – administered via a non-rebreather mask at 12-14 l.p.m. flow rate for ~10-15minutes at the first insight of symptoms (the funny feeling). oddly enough it’s the last thing the doctors here like to prescribe. but screw the doctor if they won’t prescribe it, you can sign a release from BOC and get your own medi oxy.

    3. immune status – Australia is famous for its hostile climate and pathogen environment and the Australian population’s immune status overall is rather compromised (highest incidence of childhood eczema and asthma in the world). here, natural immunomodulators are available, white ginseng is very good. this may help decrease overall allergenicity in the system. allergy testing, has this been done? how extensively? any specific environmental triggers (pollen, pressure changes, heat / cold)?

    4. nutritional and metabolic factors – monitor for and try to eliminate any foods that may trigger episodes, these include any alcohol (even in medicines) strong cheeses, smoking, caffeine, chocolate. there are some truly knowledgeable naturopaths here who can point you in the right direction.

    specific supplement regimen would include:

    Coenzyme Q50 at fairly high doses (Q10 if cant get the Q50) - for strengthening the heart, avail in Oz
    1600-2000mg piracetam (online)
    2.5mg Hydergine (online)
    250mg Centrophenoxine (online)
    2 caps American White ginseng, buy at GNC.
    2 caps twice per day Kudzu root extract (
    1 tab Blackmores Biomagnesium
    1 cap Potassium / Magnesium aspartate, at GNC

    please ask your neurologist about such recommendations and see what they may say.

    god bless and feel free to PM me.
  5. Alfa

    Alfa Productive Insomniac Staff Member Administrator

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    Jan 14, 2003
    117 y/o from The Netherlands
    What dose of paroxetine was she on?
    Headache is a well know side effect of Seroxat (paroxetine) The levels of paroxetine build up over time. It becomes effective after two weeks of intake. Paroxetine is a Selective Serotoine Reuptake Inhibitor: It blocks the reuptake of serotonine, so that the available serotonine has more effect. To much serotonine gives the serotonine syndrome. Mixing paroxetine with MAOI's or other SSRI's then paroxetine can cause the serotonine syndrome(SS). The symptoms of paroxetine caused SS are agitation, hyperthermia(increase in body temp), tremors, convulsions, changing consciousness, transpiration and delerium. I see much resemblance between the effects of SS and your daughters condition.
    Although I do not know shit, it seems serotonine may have an important role here. But the Seroxat gives an adverse effect and may have worsened things.
    Please forget about steroids. I have no resolution. As far as oxygen supply to the brain there are several brain boosters of interest: as nanobrain said, piracetam & hydergine work. A strong Ginkgo biloba extract can do no harm and increases cranial blood flow and oxygen supply.
    Have you she ever been tested for nutrient shortages? I do not know the English name for it, but here in the Netherlands we have a test called the vega test. Doctors here dislike it as much as they neglect the vallue of nutrients. It tests nutrients levels in the blood. From this test deficiencies can be found.
    I'll ask certain members to join in this topic.
  6. old hippie 56

    old hippie 56 Gold Member

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    May 10, 2005
    Sounds familiar to my wife condition. Has she had MRI on her head or upper neck? As in all neuro ailments, it is hard to pin it down. Wife has progressive MS, took us 3-4 yrs. before it was figured out. For seizures she uses 500 mg neurotin, clonazapam 4mg, and carbitrol 800 mg daily. Hopes this helps.
  7. Zen

    Zen Silver Member

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    Jan 3, 2006
    First up thank you for taking an interest in this thread.......after all this time it is enlightening to to hear new idea's and give me something I can ask if she has been tested on yet or not. I will print out some of these replies and take them with me in march to see what the doctors have to say at her next consult.

    I'll try and answer a few of the questions asked:

    She was on 25mg of Paroxetine to be taken once daily preferably with the evening meal, she took 22 doses before the episode where she stopped it cold turkey.

    She has had several MRI's and as far as I know they showed nothing, the most recent one was a head one and I think the one before that was of her heart.

    She does smoke and has done for about 3 years now, against medical advice.

    She rarely drinks alcohol and used to smoke marijuana occassionally before she started on all the prescription drugs, she is now off everything and will be until she goes to see her cardiologist in march. She swears she has never taken any other sort of drug other the marijuana, she says she hasn't been game to because of her condition, but I know several of her friends take what they call ekkies and other things before they go clubbing so she could be lying but I doubt it, I know several times they have tested her for drugs and have come up clean.

    The headaches started coming on badly about 2 and half years before she took paroxetine, after she hit her head when passing out and hit it hard enough to cause convulsions. Before that day she didn't convulse during any of her "attacks", but did come out with the occassional headache which she could get rid of just by laying in a quiet, dark, cool room for awhile.

    When she is given oxygen because of her low sats after one of her attacks it doesn't seem to really help with the headaches in the long term, also not every attack results in a headache, and she doesn't have to hit her head to get get a headache. Ben one of the paramedics thought having oxygen might help and left us a bottle to be used at will, it didn't really make much difference headache wise, he also advised trying it at the first sign of the "funny feeling" to see if it would ward off an attack, that was more hit and miss and might have had some merit but we only had the bottle for about 6 weeks so the results were a bit inconclusive. I would say the oxygen did help bring her round much quicker than without it though.

    As far as I have found out so far her only allergy is to penecillin, but I don't think she has ever been tested for other allergies, I remember her brother getting done with skin prick tests etc when he was little because of all his allergies. I don't think she has had her nutrients tested either but they have done thousands of blood tests over the last few years testing for more things than I can remember and the only thing they ever told me about was something to do with thyroid that they called TSH or TSE and said that is why she is a bit overweight.

    She does have a fairly healthy diet, the only 'junk' she eats regularly is deep fried chips with tomato sauce (ketchup) usually as a brunch on the weekends, a normal day would be toast and juice for breakfast; salad consisting of lettuce, cucumber, tomato, carrot, beetroot and cheese with low fat dressing for lunch sometimes with ham or chicken but usually just the salad or a meat and salad sandwich; steak, mashed potatoes, peas, corn and pumpkin for dinner and then maybe a bowl of ice cream or pudding and custard for dessert a couple of nights a week. lately she has been right into chinese and japanese type stir fries which are low fat with lots of vegies and very healthy.

    Thanx again for taking an interest in this,
  8. nanobrain

    nanobrain Platinum Member

    Reputation Points:
    Apr 12, 2005
    from Australia
    ^were the MTI's done w/contrast media? if not, they should be repeated. fMRI is not easy to come by in Australia - but thats really your best approach for finding out what happens in realtime.

    P.S. abnormal TSH levels may in some cases be indicative of pituitary or hypothalamic damage - which may indeed be a long term consequence of acute craniocerebral trauma.

    in which case, definitely avoid steroidal preparations, and do try the piracetam / choline combo.

    if stirfry is a favorite, make sure there's no MSG in the sauce. avoid Hungry Jacks like the plague (i used to work there as a teen) - the most difficult stuff to deal with for your body.

    do get some serious allergenicity testing done.
  9. Micklemouse

    Micklemouse Platinum Member & Advisor

    Reputation Points:
    Feb 18, 2004
    from U.K.
    Wow! Where to start, apart from What a shitty situation! My deepest sympathies to you and your daughter. Before I start I think I should make it clear that my background is in mental health, so I'll possibly be coming from a slightly different tack

    First of all, Paroxetine. Not a nice drug. I don't know about Australian prescribing guidelines, but in the U.K., although not contra-indicated directly it is not recommended that ssri's be used with caution with people with a history of heart conditions and epilepsy - 2 of the unwanted effects are cardiac arrhytmia and convulsions. Another is increased suicidality amongst teenagers, and I've known more than one person have seriouspsychiatric disturbances from ssri's. When you've got less pressing things on yer mind,I'd seriously think about putting in a complaint about the cardiologist - if not for your own closure then for other's safety; this is some dangerous prescribing, and s/he should be accountable.

    I know the tests were negative but in my experience epilepsy can be hard to assess/diagnose in some people, especially partial siezures, which don't always follow the general pattern of absences or full convulsions (although absences can occur, and convulsions can follow), and the sufferer can be fully conscious during the siezure. Altered perceptions, bizarre, disturbed or violent behavior, speech disturbance and changes in body temperature are common in partial siezures, as are panic like symptoms, 'auras' (a warning that the seizure is about to happen), and they can leave people rather disorientated for a while after. Partial siezures can be very subtle, and often go un or misdiagnosed for years, as well as becoming more intense. Just a thought but might be worth reinvestigating at some point.

    Another thought, and one you may not like (apologies!), but has your daughter had a psychiatric assessment? Much of what you describe could possibly be explained by an albeit complex panic disorder, which may well have started in your daughter's childhood, explaining the fainting fits, lack of oxygen etc. It's hard to get one's head round, but yes, 8 year olds can be vulnerable to stress. Have you explored what was going on in your daughter's life around the time that her 'clumsiness' and fainting fits started? There may be issues (possibly - hopefully! - as 'trivial' as say bullying, or a cry for attention) that you're not aware of that may have had an impact on your daughter and which left unresolved have developed into this complex, baffling and terrifying state of affairs.

    Another avenue worth exploring is definitely the thyroid issue, which can have an effect on a persons mental state, and which can be brought about by an autoimmune reaction, although your daughter doesn't seem to exhibit many of the classic symptoms associated from what you've written.

    Also, I'd definitely recommend speaking to a homoeopath. Seriously! A situation as complex as this needs a completely holistic assessment, and a gentle touch, which a decent homoepath would bring. After everything your daughter has been through it can't hurt, and it may help her to sit down with someone and talk about her life objectively, which is basically what a homeopathic consultation is.

    Best of luck and blessed be. I hope this post has been some help somewhere along the line (and not just a load of disturbing blather!), and that you and your daughter get the answers and help you blatantly deserve.
    Last edited: Jan 11, 2006
  10. Zen

    Zen Silver Member

    Reputation Points:
    Jan 3, 2006
    Some interesting food for thought Micklemouse. Thanx for adding to your first post Nano also.

    At the start the Doctors thought epilepsy for years right up until after she got her drivers licence and they took it off her. (She is now deemed fit to drive according to her doctors even though she still has "attacks", don't ask me why).

    She has had two psychological evalutions, one when she was 6 going on 7 because she totally disliked a teacher and continually disrupted the whole class, she was also extremely behind in regards to reading and writing, swore at the teacher, punched and kicked the teacher, they blamed my daughter said she had an attitude problem but eventually moved her to another class and that turned out to be problem solved, model student thereafter, and within 4 months of being in another class she was up to speed in her reading and writing, the teacher took an extended break after a nervous breakdown a few weeks after my daughter was moved from her class. My daughter was more the bully rather than being bullied at school, you can ask nagognog he has known her since she was about 13 or 14 she is a very in your face person tells you what is on her mind, whether you want to hear it or not. When my daughter got really bad like with 3 attacks a day for months on end she was mid way through a university degree in business and was only 17, after her bad start at school she ended up doing excellerated learning and completed highschool almost 18 months early with honours and credits in most subjects. She was also working for our government at what they call a TAFE college (I have no idea what the equivalent of that is in the USA or elsewhere) {TAFE is the acronym for Technical and Further Education and one of the rolls of it is where apprentices go for the study component of a trade anything from mechanical and engineering through to hairdressing and child care, they also have adult classes for passing highschool and teaching industry things like driving a fork lift, it is extremely varied in what it does and over 2 and half years there she worked in most areas of it as a business trainee and they paid her university fees to work for them because of her grades} She also had a psychological evalution before starting work at TAFE at around 15, it is part of a lot of government jobs here.

    When a doctor mentioned panic attacks years ago I did think about it for awhile and sometimes it seemed to fit as she got older specially with her study schedule, but unless something is eating at her subconscious, then I would have to say no since alot of attacks are when she is happy and relaxed with no pressure on her for anything and she is having a good time. You may have something with your "cry of attention".....her father and I used to work up to 70 hours a week ( still do sometimes ), when she was little she before school age she hated her day care mom's eldest son and used to go out of her way to not go there, but once she started school she never said anything about us not being around all the time, and once she was at school for the most part one of us was home for the kids when they were there or our nephew who lived with us was with them til we got home. And we did make time to take both kids to whatever sports they played and music lessons, and on weekends picnics and swimming etc.

    Thanx for all this feedback it has given me alot of options to consider and ask to be tested for................keep them coming please she doesn't see the cardiologist or neurologist again til march this year and I will laying all this on them at that time.