Neurologist appointment

[jimmyb84]

As my symtoms are not getting any better and I feel as if I'm running out of rope I'm considering seeking the help of a neurologist.

I would like to ask if anyone has found doing so helpful in any way? Or am I just wasting my time and money?

If I do go see one, what is the best way to voice my concerns of hppd without getting booted out the door?

Are there certain terms/words I should use to get their attention?

Any advice or personal experience stories would be very much appreciated.

[Fawkinchit]

If they are aware of the condition they will be more receptive, if they arent they wont really know anything about it. The only treatment basically that they will likely offer is sedatives, aka GABA agonists. They will help you to calm down but the burning of the brain will still be there. They do help though, especially for times when it gets really bad. You could try herbal remedies as well. Thats what I generally use. Lemon balm, and a few other natural gaba agonists will help, I cant remember what the other ones are but you can look them up.

[brake]

If they are aware of the condition they will be more receptive, if they arent they wont really know anything about it. The only treatment basically that they will likely offer is sedatives, aka GABA agonists. They will help you to calm down but the burning of the brain will still be there. They do help though, especially for times when it gets really bad. You could try herbal remedies as well. Thats what I generally use. Lemon balm, and a few other natural gaba agonists will help, I cant remember what the other ones are but you can look them up.

What do you mean by "burning of the brain"?

[Fawkinchit]

What do you mean by "burning of the brain"?

 

Somewhat of a metaphor I thought of of the feeling. Theres anxiety and visuals but theres something else going on there. Someone explained it really well in an older post, he explained that theres a siren going off in the brain, and the sedatives help to dim it, which is nice, but its still there.

[Puppeteer]

Hey man, if you're under 25 you should look into Headspace. They focus primarily on psychological services but will be able to point you in the direction of good, affordable psychiatrists/neurologists. Living near the BMRI I've been lucky enough to have gotten an MRI, EEG, sleep analysis, and extensive psychiatric consultion without paying a thing. None of it's really gotten me anywhere, but that's my brain's fault. If you're older they can probably still point you in the right direction, so they're probably still a better first resort than just asking your GP for a random referral. Good luck!

[BigPapaChakra]

I might have to look into Headspace. I think an EEG and a sleep study would serve me well, especially as I plan on undertaking extensive Neurofeedback through a NeurOptimal practitioner.

 

My experiences with neurologists have been terrible thus far. Way back when I first started experiencing HPPD (but was unaware it existed and thought I was having occipital migraines+panic attacks) I had scans of my head taken, eye examinations, etc. I recently went to a neurologist out of the University of Chicago who was supposedly one of the best in the field - he told me nothing is wrong with my scans and I probably suffer from post concussive syndrome and he doesn't believe even extensive drug use would cause the odd, extremely severe symptoms I experience. I then brought up things like LLLT and CES and he was completely unaware as to what they were and told me not to extrapolate results from studies and apply them to myself, to which I thought, "aren't you doing the same things for the drugs you'd willingly say I need to ingest?" It doesn't help that my general practitioner doesn't believe it's post concussive syndrome because I wouldn't have gotten symptoms like 2 years after my concussion(s). In my opinion, anyone who is not experienced with HPPD or co-morbid disorders like DP/DR or perhaps some personality disorders will probably brush it off as something else. As of late I've been thinking of writing a letter to both Dr. Abraham and Oliver Sacks, just to see if they'd even respond and if so what they think. 

[brake]

Big Papa Chakra - I think Oliver Sacks needs to hear about this. I read two of his books and would love to hear what he thinks about HPPD. If he is going to write more books in his life (which I`m not too sure if he will because he is getting old) HPPD is definitely something he would write about.

[VisualDude]

One important thing to do is get a doctor who is capable of thinking-outside-the-box.  What is their reputation?  Neurologists are particularly 'difficult'/useless by the very nature of their profession.  You might find one who is involved in research besides his practice.  Ones who specialize in TBI will be more useful than a general neurologist.

 

To illustrate, Oliver Sacks is just an ordinary neurologist ... not a 'specialist'.  But is personality/interest lead to the wonderful books and observations.

 

While not helpful for treatment, an Occupational and Environmental Medicine doctor can be helpful for basic diagnosis and direction.  Not necessarily HPPD but they tend to be aware of the affect to the brain by chemicals.

 

 

The next thing is to make a list of your symptoms and when they started.  When talking to doctors, minimize the symptoms that have common cause and maximize the symptoms that are only HPPD type things.

 

For example, most HPPDers suffer anxiety and depression.  If you tell a doctor anxiety and/or depression, they will tend to dismiss your other symptoms as products of anxiety, they try to treat you with an antidepressant.  Remember, most doctors are just vending machines with just a few buttons to press - so don't press any that they know ... they will have to either think or send you elsewhere.  This is just the nature of modern medicine now.

 

In the end, what medicine you try will be up to you.  But you generally want to avoid the knee-jerk reaction from docs of getting just an antidepressant and/or antipsychotic.

[StateOfRegret]

My plan for my next doctor's appointment is to draw up a timeline - much like you said, make it clear when the individual symptoms started. In my case, the visual HPPD symptoms started years before the anxiety and panic attacks. If the doctor understands that, I can't see how he could attribute it all to anxiety. 

My experience with doctors thus far has been pretty negative, though. They love prescribing antidepressants and they don't like learning. 

 

Every time I speak to a doctor I can't help but think "You would make a lousy real scientist". That kind of conservatism and lack of ingenuity would get them nowhere in, for instance, modern physics research.

[VisualDude]

Yes, we'd be stuck back to the earth being flat and 'we' are the center of the universe - how Freudian.

 

 

Turns out doctors are a business.  Some try to be 'healers' but its turned into a vending machine in USA.  Read an interesting book about the history of AMA and 'modern' medicine in this country.  (Author was a Dr Ralph Moss)  Basically there were several types of medicine available and hence competing.  So a bunch got together with political power and basically got law written in their favor ... "to protect the public".  So modern medicine at its hart is a business model.

 

Today, it takes 10 years and 1/2 million dollars to become a doctor.  Then if you want to stay being a doctor, you've got to follow the rules.  Because of the cost of healthcare, insurance companies and government now dictate an even tighter 'standard of care' (i.e. cheaper).  Add lawsuit happy people to the mix, and it becomes much 'safer' to just be a vending machine.

[hppd24years]

We need to become our own doctors and take what available information that is out there to the next level and stop relying on hopeless professionals that have really no interest in doing their jobs accordingly. It's the common denominator here "No concern for cures" I feel we need to develop an angle or a plan to get these fuckers to take us seriously or methodically figure this out as a team. Self taught education is powerful especially if we use it for the better.. This disorder is not NORMAL we should not just ACCEPT it either.. I'm very appalled by their lack of concern or knowledge towards hppd as well as their understanding towards it.. If I don't do my job properly I don't get paid so if they don't do their jobs properly why do they get paid?? Every one seems to feel pharmaceuticals is the answer or cure but in reality ur just a monthly customer which compiles up revenue for the drug companies all for monetary reasons. Dam jokes is all that seems to ride on this circular marigold round of getting no where but dizziness..

I love my purple and blue afterimages with trails on trails maybe 2 dimensional now.. I'm at the point if they did go away I would feel abnormal.. Pretty sick eh??