Seizures

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Hi-I'm sorry if this has already been covered, I am new to the forum, so still learning the in's and out's. I was wondering if anyone else has experienced a new onset of seizures since getting CFS. I had a seizure a couple of weeks ago, and have never had one before (I am 37) and have no family history of seizures. BTW-as usual my docs offer zero help. In fact, his answer to this was to pat me on the shoulder and tell me to "try not to let it happen again"! I have all of the usual crap that goes with this DD-multiple deficiencies, thyroid, adrenal, etc., EBV, mycoplasma, HHV-6, parvovirus, elevated levels of heavy metals, OI, etc. I've had symptoms since about the age of 11 or 12, but did not become debilitated until 3 years ago, following back surgery. I've tried nearly everything available to me including numerous supplements, anti-virals, antibiotics,etc. Valcyte gave me horrendous side effects, antibiotics made me feel like I was going to die, and Immunovir helped significantly-but only for about a month, then stopped working altogether. I'm really at a loss as to what to try next-my doctors act as if I'm nuts and they think XMRV is a big joke. I'm getting tested anyway-just waiting for the kit-don't care that there' no treatment yet-I just NEED to know. The seizure has me a bit concerned though, as I spend 90% of my time alone-predominantly housebound, sometimes bedbound. Is there some sort of test I should be asking for to further investigate, or would it just be a waste of time?
 
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Possible medication side effect?

Hi-I'm sorry if this has already been covered, I am new to the forum, so still learning the in's and out's. I was wondering if anyone else has experienced a new onset of seizures since getting CFS. I had a seizure a couple of weeks ago, and have never had one before (I am 37) and have no family history of seizures. BTW-as usual my docs offer zero help. In fact, his answer to this was to pat me on the shoulder and tell me to "try not to let it happen again"! I have all of the usual crap that goes with this DD-multiple deficiencies, thyroid, adrenal, etc., EBV, mycoplasma, HHV-6, parvovirus, elevated levels of heavy metals, OI, etc. I've had symptoms since about the age of 11 or 12, but did not become debilitated until 3 years ago, following back surgery. I've tried nearly everything available to me including numerous supplements, anti-virals, antibiotics,etc. Valcyte gave me horrendous side effects, antibiotics made me feel like I was going to die, and Immunovir helped significantly-but only for about a month, then stopped working altogether. I'm really at a loss as to what to try next-my doctors act as if I'm nuts and they think XMRV is a big joke. I'm getting tested anyway-just waiting for the kit-don't care that there' no treatment yet-I just NEED to know. The seizure has me a bit concerned though, as I spend 90% of my time alone-predominantly housebound, sometimes bedbound. Is there some sort of test I should be asking for to further investigate, or would it just be a waste of time?
Hi JMK,

Welcome to posting. I don't envy you trying to unravel this, my understanding is that seizures can be caused by many, many things. I can only share my own personal experience FWIW. I had one seizure years ago and my doctor believed it was caused by an anti-depressant that I was taking at the time - norpramine (I think). In any case, they reduced the dose and I then got off of it altogether. I never had a repeat seizure. Was that the problem? No way to know for sure.

So, if you can, please look at any meds you are on and consider whether that might be an issue?

Good Luck,
 

Lily

*Believe*
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Seizure

I hope that your physician at least referred you to a neurologist for a thorough work-up to rule out certain possibillities, rather than chalk it up to 'unknown' so fast. New onset of seizures is no little thing.
I have seen other CFS posters here and another on forum mention seizures, so it's not unheard of, certainly one of the more rare occurences. There are many different types of seizures and I'm assuming you are referring to a grand mal seizure and I may be assuming incorrectly, but in any case, I would think a work-up by a neurologist would be in order just to be on the safe side.
So sorry you are having to deal with so much with this illness and I can sympathize about being home alone.
 
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Thank you for your reply Weldman! The only prescriptions I am currently taking are low dose hydrocortisone and T3 for thyroid. I've been on the same dosages for almost a year and have not had any problems with them. I just had my thyroid levels checked and they were within normal range. I did have a glucose tolerance test a few days ago, which I failed miserably, so I am wondering if that may be the problem, or at least part of it. With so many different things gone berzerk in my body, I can no longer decipher what's causing what. I appreciate the input and will let you know if I figure it out.
 

Lily

*Believe*
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Gtt

I didn't think they were doing GTTs anymore, and I don't know what you mean by failing miserably, but a very low blood sugar could indeed cause a seizure.
 

fresh_eyes

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Sounds scary, JMK. I don't have any input on the seizures (except to say I've definitely heard of PWCs having them, especially as the disease progresses) but just wanted to welcome you to the forums. Welcome. :)
 
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Thanks Loldershaw! No, my doctor did not refer me to anyone, nor did he order any tests. Yes, it was a grand-mal seizure-violent convulsions, spit pouring out of my mouth. My doc said that since I neither lost consciousness, nor bit my tongue, that it was not an epileptic seizure, just a "stress-induced" one. Seriously, all he told me was to "keep an eye on myself and try not to let it happen again"!! WTH?!
 

Lily

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Omg!!!!!!

I must vehemently and not so respectfully disagree with your physician!!!! I have witnessed MANY grand mal seizures and just because someone does not "bite their tongue or lose consciousness" has nothing to do with anything and is absolutely ludicrous! Sorry, I rarely am so appalled. Please find yourself a new physician.:eek::eek::eek:
 
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Thanks Fresheyes! Loldershaw, what I meant is that halfway through the test, I got really sick:hot and sweaty, then cold and shaky, nauseous, dizzy, felt like passing out, severe throbbing headache, and very weak. Finally, a tech came to check on me because as she put it "my results were so abnormal, they thought I might lose consciousness and they put a STAT order on the test because my blood sugar had so drastically plummeted". They then insisted that I lie down. I ended up getting very confused and disoriented. Ironically, they let me leave like this. Makes me feel like I'm at the mercy of idiots!:eek:
 

fresh_eyes

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I must vehemently and not so respectfully disagree with your physician!!!! I have witnessed MANY grand mal seizures and just because someone does not "bite their tongue or lose consciousness" has nothing to do with anything and is absolutely ludicrous! Sorry, I rarely am so appalled. Please find yourself a new physician.:eek::eek::eek:
Seriously. That is some shockingly bad medicine. Arrrrgh.
 

Lily

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OMG again!!!

Sounds like the test should have been aborted and you should have been given glucose to drink if you were still able or a IV bolus of 50% dextrose, certainly NOT left alone. You could have had a loss of consciousness, had a seizure and/or stopped breathing.

Do you have anyone to help advocate for you? A friend or a relative that could go with you to see a different doctor? Are you able to self-refer to a neurologist? I know how difficult it is when you live alone. For myself, getting to a doctor appointment is torture, and I can still drive on a good day, just can't walk very far - and the thought of starting with a new doc would cause me to have a serious crash - BUT, I do think you should be worked up by someone with at least an ounce of sense. (Hard to find, I know)

If your doctor didn't order any tests, may I ask what prompted the GTT? Because of the GTT, the neurologist may not be the place to start......
 
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Loldershaw-thanks for the replies. I do not live alone, but with my husband (who does not "get it") and ignores everything going on around him. No, I do not have anyone to help-only my parents and brother are the only ones who take this seriously and they are too busy to fool with it.
On a good day, I can drive short distances, just not walk far. Unfortunately, I drove myself for the GTT test, because I thought it would be okay since I live close to the hospital and I knew no one else would take me. I am ashamed to say that I did somehow manage to drive home afterwards. I would NEVER have done so, had in been in my right mind. I'm pretty angry that they let me leave in that condition (AND they KNEW that I was alone). To me, that's like sending a drunk out to drive.
As for finding a new doc-pffttt....this dude iS my new doc! The last one could care less what was wrong with me and I was always greeted with,"So, what's your problem now?" And no, I cannot self-refer, or I would. I'm consideing perhaps going to an urgent care facility, just to get a referral from a different doctor. Though I must say, I not looking forward to further humiliation, though I should be getting used to it by now. Sorry for the rant-I'm just feeling really guilty about driving home that day, and what I could have caused.
 

Lily

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Don't waste you energy.....

Please don't waste your energy thinking about that day - it's a wonder you could think at all, let alone make appropriate decisions, and you are not to blame for that. Thank goodness you made it home all right.

I do know what you mean about looking for another physician and I wish I had some suggestions there. Frankly, I am not sure you would get any help from an urgent care, and I understand fully about not being up for more humilitation. Hopefully someone that has more brain power than I do will have a suggestion for you.
 
K

Khalyal

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Hi JMK

I'm so sorry this has happened to you, and I fully know how scary it is, especially when you can't get any real validation from anyone.

I realize that what I'm about to say may or may not apply, but I've come to learn that my seizure activity is directly proportionate to the amount of exposure I'm getting to toxic mold.

My first seizure was a few years ago, after I had left a toxic mold situation and gotten clear, and then got re-exposed. I was acutely sensitive, and went into a seizure nearly instantly. Since then, I've been able to correlate the two consistently.

Hospitals are notorious for toxic mold issues.

Just a thought!

Khaly
 

CBS

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Seizures and cerebral blood flow

Hi JMK,

In CFS you can also have absence seizures with "epileptiform" waves which are not, however, the classic "spike and wave" pattern of conventional epilepsy. These are triggered in CFS by a lack of oxygen in the brain, either through low oxygen uptake or through hypoperfusion (inadequate blood flow).

<lsnip>

All my seizures were caused by inadequate blood flow to the brain as a result of a heart arrhythmia. I had no idea my heart was doing anything funny but the big clue here was that I never had an aura before an attack. Since heart surgery I have had no seizures.
I wanted to comment on what Athene wrote. I had relatively minor CFS symptoms until May '08. One day I was in theater and I blackout right in the middle of the climactic scene (Ironman). Over the next several months I started to have dozens of TIAs (blacking out due to lack of blood flow to the brain) a day, I developed palsy on the right side, periods of aphasia, and both retinas started to detach.

The cause for all of this was extremely high spikes in BP. According to my neurologist and cardiologist, the huge jumps in BP forced so much blood into my cerebral vessels that the pressures/hydrodynamics of the cerebral vascular system would fail (backup) and areas of my brain were no longer receiving enough blood. In response, my nervous system would sense a shortage of blood to the brain and send a signal for more and my HR and BP would jump even higher, a vicious cycle.

My BP wasn't always sky high (but during a week of head scratching visits to the ER my systolic was often in the 160-170 range) but my docs had me wear a Holter monitor for a day (measures HR, not BP but the erractic HR clued them into the problem), then admitted me for a day of observation.

My cardiologist prescribed an ace inhibitor (for BP), raised my beta blocker dose (for HR) and told me to be patient. Sure enough, 10 days later my BP dropped and the TIAs/blacking out stopped. A month later my eyes started to heal (I too am on hydrocortisone - 10mg on waking and 5 mg at noon - secondary adrenal insuff.) and this along with stress and gender were blamed for the retinopathy - turned out that the hydrocortisone may have made it more likely but I am still on it, I'm still male, and my eyes have healed very nicely, thank you! All my retina specialist could say was 'Wow!'). Turns out the vessels between the retina and the back of the eye were so engorged when my BP would spike that they were separating the layers of my eyes. For me, all of this appears to be part of a larger autonomic problem.

Best of luck getting to the bottom of this (and I do hope this board helps provide some much needed support).

Shane
 
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Athene-thanks alot for the info. I will check into getting the tests, though I doubt my doctor will order any. Coincidentally, my heart rate was sky high the day of the seizure. This happens to me from time to time, not sure why. I do feel like it's connected some way. I'll continue to research on my own and I really appreciate all of the tips. You guys rock!:) @Khayal-interesting about the toxic mold. My doctor has said that he wants me to get our house tested for mold, so I'll let you know.
 

CBS

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What about me?

Athene-thanks alot for the info. I will check into getting the tests, though I doubt my doctor will order any. Coincidentally, my heart rate was sky high the day of the seizure. This happens to me from time to time, not sure why. I do feel like it's connected some way. I'll continue to research on my own and I really appreciate all of the tips. You guys rock!:) @Khayal-interesting about the toxic mold. My doctor has said that he wants me to get our house tested for mold, so I'll let you know.
Grins!:rolleyes:

Best of luck!
 

CBS

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Docs

One additional thought. I have fired a lot of doctors over the last 16 years and if wasn't for the ones that I have kept, I would not be in the lousy shape I am in today. If I had stayed with the others I'd be dead. I'm lucky to have had the option of turning my back on those who said they could not help.

If I have learned nothing else from this ordeal it is that when I doctor says they have nothing to offer, don't argue, THEY HAVE NOTHING TO OFFER.

(And note to self - Shane, it's not always about you!)
 

fresh_eyes

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Shane - reading about your retinas detatching and remembering what you wrote on the other thread about your BIL advising you that you need to have a child to take care of that pesky CFS...(*shakes head ruefully*) And who is supposed to be delusional here???

(ps I'm sure JMK posted before she saw your EXCELLENT contribution! :))
 

Lisa

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My mom had CFS and MCS for about 16 years before she passed away. Her main symptom was seizures and muscle tremors. She first developed this in the 1980's after a toxic exposure to fumigants for termites and it was still during the time when nobody knew almost anything about these conditions.

I know she underwent a fair bit of testing over the years, but it seemed nothing was really ever found. Her seizures often were from chemical triggers, too much physical exertion, and times of very high stress.

Given when she became ill, they treated her with Valium and Flexeril which did seem to lessen them considerably. Granted she ended up with her body addicted to them and a hard time ever going fully off them but I think overall they did greatly improve her quality of life in the bad times that it was worth taking them.

I also second the thoughts here that you may want to still be looking for a different doctor. Unbelievable that he would just tell you to take better care of yourself after you suffer a seizure. Surprising in its self because of how much he opens himself up to malpractice problems if something should progress that could be found with a few standard tests. It speaks volumes as to how much he thinks all this is either made up or without cause, not something that is good to find in a doctor. :eek:

Certainly your blood sugar problems could be some of the cause. What sort of diet do you have?

And agree that you shouldn't give another thought to having driven yourself home that day from the hospital. Its the staff's job to be competent in evaluating if you can drive, not yours when you get in that sort of funk. They should be trained enough to recognize when people are disoriented with that sort of testing and have given you something to pull you back around. Nothing happened from you driving home, you've learned a valuable lesson about such tests and what they do to you, and can act accordingly should there be a next time. No need to keep recriminating yourself for this. :)

Don't know if any of this helped, though I hope it did. :)

Best of luck getting this sorted out!

Lisa :)