Horror feelings/pulsating/rages/hyperacusi

[mkor]

PLEASE help me-

I feel like im going crazy but no medications have helped me-psychiatric or anticonvulsants etc and i dont iknow whats wrong with me-im living in hell and i think i wont ever get a diagnosis and working treatmwnt and that the only way i will be free from this is to commit suicide

Am i the only person in the world that has these symptoms


I am having continuous worsening symptoms for at least two years involving episodes of
*tingling in feet,sometimes hands,
*spontaneous full body sweating,
*muscle twitches,
*headaches(non tension or pulsatile in quality) and /or pressure in head,
*occasional nausea,
*spontaneous huge extreme out of control rages-without reason or provocation,
*spontaneous hysterical crying-again without reason,
*atmosphere changes-eg:everything literally becoming darker,
*hyperacusis(extreme noise sensitivity),
*memory loss,disorientation,
*blurry vision,
*severe internal shaking/tremor in head-occasional in full body
*& then episode ending in
extremely strong and severe pulsating in stomach,toes,head and occasionally other areas too.

These
episodes range from two minutes to two hours approximately and happen
continuously hundreds of times day and night ie:as soon as one ends
another one begins and this continues even when im sleeping and i get
wakened by these symptoms approximately 10 times a night.

Significant test results:
*Eeg:slow waves over the temporal lobes
*Pet scan:hypometabolism over both temporal lobes especially the middle temporal gyrus and more pronounced on the left
*Mri:normal
*Emg:mild sensory neuropathy
*Ive tried many medication and none have helped at all

Does anyone have this or similar or know what could be causing this?
PLEASE help
Thankyou very much

[ggreg]

Or relating to Dr. Ab's comments, whomever is going to give you your test results can up the dose of the Tegretol, or a family physician, or another doctor.  I only suggested the hospital sedation becuz it sounded like you were at the end of your rope.  I figured if you went in to the hospital really upset like you were in the other post, they'd just automatically knock you out.  It's not something you would ask for; they would just do it.  But you've already gone, so...

I'm glad you have the Lifeline number now.  You should also be in touch with your personal physician or some other doctor for when your symptoms get to be too much, since your neuro is on vacation.  I just don't want you to get suicidal again, when the proper treatment would most surely help you... the medications you had mentioned taking are not the only ones out there for your condition.  It's not natural for you to feel the way you've been feeling, and you shouldn't have to suffer like you have.

[Abhijeet Deshmukh, MD]

Hello.

Tegretol hardly works on 100mg. The dose usually needed is 400mg. See if you can email your Neurologist about this.

Regards

[mkor]

Thanks for your concern.
Ive just come back from the hospital where i had some tests and now im waiting:( for the results
Thanks for the number.
Id be abit concerned/scared with having drugs that heavily sedate-like administering high doses of haloperidol by iv-isnt there a high possibility of it causing Tardive Dyskinesia?
So while something to make me not feel this way would be good but i dont want to risk anything like that.

[mkor]

I have a good neurologist but he has gone on holidays for 4 weeks
I have tried tegretol on a reasonably small dose of 100 mg and it had no effect.Do some people need larger doses before it helps their symptoms?

[ggreg]

Dear Mkor,
Please go to the hospital emergency room today.  They will give you some amazing sedating drugs that will practically knock you out and make you feel wonderfully better, and then they will admit you for a few days to get you straight.

In meantime, here is the Australian Crisis Intervention phone number.  It is good for all parts of Australia, there's always someone at that number to help you until you can get an ambulance to come pick you up or drive yourself to the hospital:

Lifeline
13 11 14

Hang in, call Lifeline, and get thee to a hospital emergency today, please.  All in the world that is happening is you are having brain seizures, it's making you feel really bad, and as you said before, your medications are not working, which is why you are in dire need of immediate hospital assistance.  
GG

[Abhijeet Deshmukh, MD]

Hello.

I would like to ask if you have tried Carbamazepine (Tegretol). Temporal lobe hypometabolism and EEG changes suggest that you have a seizure. Are you in touch with your Neurologist ?

[mkor]

i should have mentioned i live in Australia.
I havnt had a 24 hour eeg done

[heart2heart2]

Sorry to hear what you're going through. Have they done a 24 hr EEG on you? It sounds like a seizure disorder coming from the temporal lobes. I'm surprised no anticonvulsant has helped you, there are so many now to choose from. You really need to see a top neurologist- do you go to a teaching hospital? They may even have to do a spinal tap to rule out infection, etc. I hope you find an answer soon.

[ggreg]

Dear Mkor,
I hear you.  I know where you're at.

If your symptoms began before you were on any medications at all, then it is not drug-related.  Withdrawals apply to drugs, they don't just happen, unless you're an alcoholic or smoker trying to quit.  You did say something, tho, that indicates eventually you did take drugs, when you wrote, "I'm not taking any medication AT THE MOMENT," so of course I now wonder if anything you recently took has CONTRIBUTED to your situation.  But again, since symptoms began before drugs, that's not what CAUSED it.

Sedation can include these classes of drugs:  Barbituates, antipsychotics like Haldol, and opiates.  If you walked into an ER in your most agitated state, with a history of temperol lobe malfunction, they would likely sedate you in the manner I am speaking about, giving you an I.V. or a shot of a large dose of whatever they prefer to use in their hospital.  When I say you need sedation until they can figure out what is going on with you, I mean that you ought to be in the hospital and they should respond to your distress by knocking down the terrible stress you are experiencing with some sort of anesthetic, and then they can do EEGs and brain scans, a whole workup.  They wouldn't let you just suffer while they looked through their textbooks.  Eventually when you get to a place where you can be released, they would give you a comparable medication to take with you.

What bothers me is, if you have anything remotely akin to temporal lobe epilepsy, you should be under the care of a neurology clinic, where all they do is treat brain disorders.  You should not be left alone to deal with this.  Now, those clinics can also sedate you, and they will be very knowledgeable in what drug is best for you to take regularly for your particular disorder, if and until they can cure you.  The benzos you've been given are pretty light-weight, no match for your dreadful distress.

The Crisis Intervention I am referring to is not a mental health clinic or psychology group or psychiatrist.  It is a nationwide organization that responds to telephone calls from people who are losing it.  Every phone book in the U.S. has that phone number listed in the yellow pages, sort of like the way 9-1-1 is commonly known.  If it's not listed, you can call information at 4-1-1 and ask for the area's nearest Crisis Intervention phone number.  Keep that number written out by your phone.  When you need it, you won't be able to look it up.  Sometimes when folks reach their limit in coping with frightening or suicidal thoughts, they are literally stuck wherever they are when they have a break with reality, and the only lifeline is the telephone.  Years ago I had a nervous breakdown, was suicidal, and I picked up the phone and called a group that was several counties away from the rural area I lived in.  A young man talked to me for several hours, whilst I sat on my kitchen floor and crying, and he helped me "come down," and I was able to make it through my "crisis," and I when my thoughts cleared, I visited a local doctor a couple days later.  Having that phone number handy is also to protect you from doing anything rash.

I personally think you have an unnatural physical basis for your very disturbing experiences, and you will have to be proactive in seeking relief, even if you have to travel to another city to get better help than the folks in your town have given you so far.  And some ERs are better than others, but an additional consideration for you.

I also think you should give a try at the "Ask The Doctor" section, with a link at the left of this forum, physicians-only respond to people with problems for a minimal fee.  You sound like you need a physician to help you with this.  I'm just trying to steer you in the right direction from what little experience I have had with your type of situation.  I've been where you are and I didn't like it, either.
GG

[mkor]

Thankyou for replying
all these symptoms started before i took any medications so i thought it wouldnt be that causing it-though maybe like you said a person can also have withdrawal symptoms without realising it.
Im not taking any medication at the moment either so it wouldnt be that or interactions that are causing this either.
Sedation?Are you referring to benzodiazepines?-ive tried valium,oxazepam,etc and they havnt helped with these symptoms at all but theyve helped me to stay asleep because i get waken up approximately 10 times with the horrific vibrating?/pulsating/fizzling? sensations in my feet and shaking and pulsating in my head etc.Im so scared and i wish that benzodiazepines would help but unfortunately its not that way for me.
The neurologist thought that it might be a type of migraine and prescribed nortriptyline but it didnt help and while pain in the head is involved i think its more than migraine.
Ive seen a few neurologists and none have been sure what the temporal lobe hypometabolism correlates to-most have said migraines or temporal lobe epilepsy.
I seen the crisis intervention service once approximately 6 months and the lady said "you are hallucinating all this"-after an experience like that it very much puts you off ever seeing another psychiatrist.

[ggreg]

The only thing I can identify with is a very bad reaction to a medication I was taking, Lexapro, an SSRI.  I thought I would go mad, suicidal, throwing stuff, the whole nine yards.  Also, sometimes when a person goes off or reduces dose in some medications, they'll have withdrawals without realising it, which might explain some of your symptoms.  Your physician should review your drugs straightaway, you can get a squeeze-in emergency appointment.  At the very least, while you are going through this physical variant, you need to be sedated big-time, insist on it.

I hope a neurologist is looking into why your temporal lobes are not working as they should.  If they don't know why, forthwith find an expert who will take the time to treat whatever is causing that.  Could be that's what making you feel so awful.  

While you are weathering the storm, take heart, many people have visited that place where you are.  Take it one day at a time (altho for me it was one hour at a time).  Put the number next to your phone for the Crisis Intervention service for your area, they can talk you through anything and they're available 24/7.

[mkor]

can anyone help?