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Old 01-04-2008, 10:45 AM
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How long has this been going on for you and how old are you? Did these symptoms start suddenly, or have they been increasing over time?
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Old 01-04-2008, 10:47 AM
Location: Duncan, OK
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mkor4, *hugs* and take a deeep breath. I noticed more than one SSRI in your list of meds. Everything you describe can come from SSRI withdrawals. (I know this first hand ) You are not alone... I will send you a DM shortly to let you know what I went through.
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Old 01-04-2008, 10:48 AM
Location: Oz
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You're in Australia, and I don't know the laws down there regarding cannabis. While I don't normally advocate the use of illegal drugs (if it is indeed illegal down there, I don't know) you might try to get your hands on some and use it to take the edge off the pain and rage while you try to find out what is going on. If you can get your symptoms to a point where you are less uncomfortable, it will be easier to take the time and figure out what's going on.
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Old 01-04-2008, 10:55 AM
Location: Texas
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Originally Posted by nicolepsy View Post
well, sounds like it would be a good idea to google "best neurologist" in your area and make an appointment. Maybe you are suffering from a couple of different things at the same time? Maybe you are suffering from some type of nerve disorder (hopefully not anything as serious as multiple sclerosis) and also suffering from a mood related disorder? Please keep hanging in there! your type of problem can be very tricky for a doctor to figure out. doctors dont always have all the answers immediately. they sometimes need to figure out correct diagnosis by a process of trial and error. a person's illness can be like a puzzle to them until they find the missing piece. also, all doctors are not created equal which is why i think you should try another neurologist.
also, a lot of the drugs you have taken can cause many horrible side effects.
these medications can sometimes cause even more troubles for you. I am not saying that all medications are harmful or bad but i think it would be wise to try to stop them for a bit and see if any positive changes happen.
please hang in there. there is probably a 1-800 type of suicide hotline that you could call when you start to feel suicidal. i am sure the person on the other line could help you if you would call them.
i am sure things can get better for you if you will only be patient.
others here on cd will respond over the next few days and offer more help.
it takes a while sometimes for cd posters to notice a post so please hang in there so that some others can help you.
dont forget to look up that suicide hot line number! keep it handy!
I think Nicolepsy had some good advice for you here. I think I would try to find the best neurologist you can get to. Consult 2 or 3 if necessary and please explain to them how desperate you are feeling!

Praying for you and for you to find healing or an answer to this!
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Old 01-04-2008, 11:19 AM
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I really think this sounds like a seizure disorder. I actually don't think your symptoms are all over the place - I think they fit very well with seizures, which do not have to involve loss of consciousness, etc. They can take many forms. (The hypometabolism would also fit here).

The Lyrica I mentioned would be a possible medication if this is the case. Again, it also is used to treat nerve pain so I think it would really help.

Then something like Valium could be added, as needed.

And then *if* this is some sort of seizure disorder, your doctors should consider metabolism issues as well as possible infection. (The infection issue would be the first thing to look into, I think).
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Old 01-06-2008, 08:44 AM
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Thankyou very much for your replies
Dear marlow:its been going on for many years and im 27.the frequency of the episodes havnt been increasing over time but the severity of the symptoms definately has got worse and worse.

Dear Nicolepsy:I saw a neurologist about two months ago and he thought it might be migraines and prescribed nortriptyline and antidepressant which is meant to help with headaches but it didnt help and i dont think it is migraines because these episodes happen continuosly 100s of times day and night and ive tried 6 migraine medication which havnt helped.Id like to see aother neurologist but i really need help and treatment now and a neurologist wont see me for a few months.I tried going to the hospital a few times but they said they wont treat me because it isnt "acute"enough which i dont think is right.

Thankyou LadyRobyn:i think for me it wouldnt be side effects of ssri withdrawal because i had all these symptoms before i took any medications and the only reason why i took medications was to try to get rid of these horrific symptoms.

Dear Kaykay:thankyou very much for praying for me

Thankyou RoaminRed:i was thinking the same thing regarding cannabis.
Usually i wouldnt take illegal drugs but i heard cannabis had been helpful for people with tingling feet(neuropathy) and also like you said it would be worth trying to see if it took an edge off/had an effect on the rage,pain and pulsating etc but in Australia it is illegal and they are very closed minded here about things such as cannabis being used for medicinal purposes.I would like to try it to see if it helps but i dont know how i would get any.

Dear goldenmom7500:Thankyou.Ive already tried valium-it didnt help with the symptoms but it helped me to stay asleep because i wake up many times sweating,or with the pressure or shaking in my head and pulsating in my head/body etc.
Do you know if the Lyrica is the same or diffferent to neurontin?I had neurontin before but it didnt help me.
The thing i dont understand about the hypometabolism is that in epilepsy i think the petscan is meant to show hypermetabolism when a person is having a seizure and hypometabolism in between seizures, but for me i was definitely having the symptoms during the pet scan and it said hypometabolism?
What are metabolism issues?

I have had tests shown above acceptable arsenic levels,mycoplasma fermentans,and high glycine levels but with the first two the doctors said they wouldnt cause these symptoms and noone knows what the high glycine refers to and when i looked it up on the internet i only found information about a childrens disorder involving high glycine causing retardation.

Please help
Thankyou very much
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Old 01-06-2008, 12:41 PM
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A partial response ... yes, Lyrica is a cousin of Neurontin, but "new and improved". Too bad that Neurontin didn't help. Lyrica still might be worth a try. The Valium (in the case of seizure disorder) would not be the primary medicine given, and wouldn't be for typical anxiety, but again it's too bad that so far it didn't help either ... More soon ...
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Old 01-06-2008, 12:54 PM
Location: huh?
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hello again,
it is definitely not migraines so that is why you should see a new neuro. there has to be a neuro somewhere that can see you soon. if not then maybe an internist can help you get into seeing a neuro. there are many many metabolic and mitochondrial disorders that could be a possible diagnosis for you. these types of disorders are just now becoming more understood and a lot of doctors are not familiar with them at all.
your high arsenic levels sound worrisome. why would you have arsenic in your blood? how do you know that this isnt the main problem and that you are suffering from a low dose, chronic poisoning?
whatever you do, dont give up. you will find the answer soon i am sure.
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Old 01-06-2008, 07:43 PM
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I totally agree with nicolepsy, and specifically, the arsenic issue is very odd. Heavy metal toxicity could be causing this. You asked me about metabolic disorders and that refers to, say, sodium and glucose processing (things like electrolyte balance, diabetes) - I'm not saying you have these though!

In any case, I hate to go out on a limb here, but this might give you some things to talk about with your doctor. I mentioned before I think this sounds like a seizure disorder. Has anyone mentioned partial temporal lobe seizures to you? These do not involve a loss of consciousness, but involve strange sensations and can have an emotional component as you have described.

And then the pain, well, I think the generic term is peripheral neuropathy. But that doesn't get you very far since there are a lot of causes and we have to presume that all of these symptoms are connected.

Again, to treat the symptoms, doctors are going to reach for the anti-seizure drugs, and I think Lyrica (Pregalbin) is probably the one to look into - especially because it is supposed to be effective for nerve pain.

If I remember correctly, one thing no one has tried is any steroids. Again, I don't know if it's warranted, but if there is some source of inflammation, this could help.

Have to run, my daughter is standing here driving me bonkers . I hope I haven't gone too far mentioning specific things. Please keep us posted.
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Old 01-07-2008, 04:02 AM
Location: NoVa
18,435 posts, read 27,907,236 times
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It sounds like temperal lobe to me too... I would get to a good neurologist on the ASAP and they can run an eeg to test for seizure activity in the brain.

Migraines would have you sensitive to noise and light, sometimes nauseus, etc.

Peripheral Neuropathy also sounds included, and a Neuro can help with that as well. Lyrica has helped many many patients int he practice I work for, dr even asked if I wanted to go on it.. I refused, too many other meds I am on.

I wish the best of luck to you, and once again, I think a COMPLETE physical is warranted, as well as a trip to a very good neuro.
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