# Update : Neurologist Diagnosis



## Timer (Feb 10, 2011)

Hi,

OK - So today I went to a neurologist for the 1st time, she asked a series of questions and I explained my whole DR state to her. I explained DR (she knew what it was) and how it effected me and my vision.

She has basically said its a 'painless migraine' which can be quite debilitating she also stated its 100% curable (contrary to what I have read) . Im gonna go on a drug which I take daily as a preventative and one which I take when my headaches appear.

Im not sure if she has mis-diagnosed and just overlooked the DP/DR or she has hit the nail on the head. Anyone know any more on this or have any thoughts? Here is a page of information I have found on preventative treatments for chronic migraines and interestingly a lot of the meds brought up with DP/DR are mentioned (lamotrigine, Keppra, Topamax etc)

I'm not sure which I will be going on to yet as I wait for her to instruct my GP with the meds I require but she did explain the DR as well - "feeling like looking through glass?" "disconnected / dissociation" Alcohol being a trigger / sleeping too little or too much.

Heres some links I have found on it -

http://www.migrainetrust.org/preventative-treatments
http://www.migrainetrust.org/chronic-migraine


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## forestx5 (Aug 29, 2008)

Timer said:


> Hi,
> 
> OK - So today I went to a neurologist for the 1st time, she asked a series of questions and I explained my whole DR state to her. I explained DR (she knew what it was) and how it effected me and my vision. Hey,
> 
> ...


Antiepileptic meds? Why am I not surprised? Here is hoping you find relief in your treatment. Congratulations on taking the initiative.


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## Guest (Feb 23, 2012)

[quote name='Timer' timestamp='1329956981' post='251147']
Hi,

OK - So today I went to a neurologist for the 1st time, she asked a series of questions and I explained my whole DR state to her. I explained DR (she knew what it was) and how it effected me and my vision. Hey,

She has basically said its a 'painless migraine' which can be quite debilitating she also stated its 100% curable (contrary to what I have read) . Im gonna go on a drug which I take daily as a preventative and one which I take when my headaches appear.

Im not sure if she has mis-diagnosed and just overlooked the DP/DR or she has hit the nail on the head. Anyone know any more on this or have any thoughts? Here is a page of information I have found on preventative treatments for chronic migraines and interestingly a lot of the meds brought up with DP/DR are mentioned (lamotrigine, Keppra, Topamax etc)

I'm not sure which I will be going on to yet as I wait for her to instruct my GP with the meds I require but she did explain the DR as well - "feeling like looking through glass?" "disconnected / dissociation" Alcohol being a trigger / sleeping too little or too much.

Heres some links I have found on it -

http://www.migrainetrust.org/preventative-treatments

Please follow up with what they put you on and how your DP/DR is responding to it.


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## Guest (Feb 23, 2012)

Timer said:


> Hi,
> 
> OK - So today I went to a neurologist for the 1st time, she asked a series of questions and I explained my whole DR state to her. I explained DR (she knew what it was) and how it effected me and my vision. Hey,
> 
> ...


Please report back what they prescribedyao you and how your DP/DR is responding to treatment


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## Jayden (Feb 9, 2011)

I had many HORRIBLE migraines growing up. They used to hurt so bad that I would cry and I have a pretty high pain tolerance. Make sure you update us about this stuff.


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## Timer (Feb 10, 2011)

As soon as I find out the meds I will update and also let you know how I get on with them.......fingers crossed


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## Guest (Feb 23, 2012)

Timer said:


> As soon as I find out the meds I will update and also let you know how I get on with them.......fingers crossed


Thank you!


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## kate_edwin (Aug 9, 2009)

The two conditions exist, and one neuro visit only gies you a preliminary diagnosis. Topomax and depakote are both used to treat migraines, depakote at psych doses made me so tired I could t life my head off the table and it needs regular lab tests. When I tried topomax (and I do get migraines both with and without headaches), I actually had to stop it because it gave me headaches. Dp and those migraine symptoms may happen to about the same number of people, if you don't have drugs or a trauma history and don't have other mental symptoms it could be migraines...only treatment and time will tell really


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## Guest (Feb 24, 2012)

Can someone please explain the symptoms of a painless migraine?


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## kate_edwin (Aug 9, 2009)

there a huge range of symptoms people get, it's like a migraine aura without the headache. i've gotten numb and tingly over half my body and my face before, the visual sparkles, light sensitivity, some people get wavy lines, there can be hearing things, touch things........may have nausea or not...... there's really a million different ways people experience a migraine, so you can see how a neurologist might think dp is a migraine, but usually migraines don't last that long, although they can, I had one for 3 days once, and some people have them daily or every other day. it's often very individualized.


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## Guest (Feb 24, 2012)

*Painless migraine/silent migraine -- essentially one remains in the "aura" of the migraine. This would be like remaining in the "aura" of a seizure.*

http://migrainetablets.net/migraine/painless-migraines-stages-and-symptoms-of-painless-migraine/

"Many people know that migraine is an excruciating pain, although Painless Migraine is far more than that pain.

" All types of migraine have 4 stages:

*1/ pre migraine headache, 2/ aura, 3/ headaches, 4/ post headache.*
There are many people suffer from migraines ( four stages migraine ). There is another type of migraine, which is painless and known as painless migraine episodes.
*If you go to IHS ( international headache society ) to classify and diagnose your migraine. The doctor will tell you that you have painless migraine or optical painless migraine."*
&#8230;

Painless migraine has the stages of the normal migraine, but it skips the headache stage. Painless migraine start with pre headache phase then aura stage after that it stops.
If you have the other symptoms of migraine without a headache, you may have painless migraine. It is termed as *visual migraine with aura.* The physician describes it as painless migraine or acephalgic.
It is very helpful to you to recognize prodrome as it is telling and warning you that the painless migraine is starting. There are many symptoms to make you know:
*Signs of an impending painless migraine:*
•	Fatigue.
•	Constipation.
•	Food cravings.
•	Diarrhea.
•	Frequent urination.
•	Stiffness of the neck muscle.
•	Irritability.

*Actual "Silent Migraine" experience:* 
•	dizziness.
•	Find the words' difficulty.
•	Hearing sounds which are not there that known as auditory hallucinations.
•	The ability of your hearing being decreased.
•	Confusion thinking.
•	Imbalance ( decrease or increase ) touch and feel.
•	Paralysis.
•	Smelling odors, which are not there that known as olfactory hallucinations.
•	Numbness or tingling of your face.
•	Blurry or partial vision.
•	Seeing bright light, flashes, spots, zigzag or wavy lines.
There are many names for painless migraine as sans migraine , silent migraine and migraine equivalent."

----------------------------

I know individuals with occular migraine and epilepsy. Some describe DP/DR symptoms, some not. But they are transient, as are these episodes.

Treatment I noted was with various meds, but anticonvulsants were mentioned. But this is not uncommon as there may be some connection w/migraine/seizure ... with variations. And anticonvulsants have a calming effect on the brain.

I know an individual who had DP/DR, took Neurontin, does not have DP/DR anymore, but is anxious, has occular migraines and depression.

RE: the diagnosis. This is always dicey. I believe DP/DR is a neurological perceptual distortion caused by any number of things we aren't able to understand -- medicine doesn't understand. But I have heard of many with DP/DR MISdiagnosed with TLE and this type of neurological problem. I do find it both frustrating and interesting that neurologists run into DP/DR all the time. But a chronic state of DP/DR, mainly on its own would not be a silent migraine.

But I have thought that perhaps DP/DR is not psychiatric at all, but "being stuck in an aura" of some sort. Like being stuck in "deja-vu", etc. Theses "silent migraines" seem to have occular symptoms -- eye symptoms -- like flashing likes, spinning pinwheels, etc. Flashes, etc.,etc.


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## Guest (Feb 24, 2012)

PS, also very curious re: your response to this. Keep us posted.

And, in my experience and that of others, anticonvulsants seem to be the most successful (to one degree or another) of helping with DP/DR -- for me with chronic 24/7 for years it is only a milder improvement. For some with episodes that come and go these meds may help more.

I'm on Lamictal 200mg and my lifesaver Klonopin 6mg


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## Timer (Feb 10, 2011)

Thanks for the above info Dreamer.

The neurologist seemed quite certain in her diagnosis, I also explained DR and brought it up and she did know about it. She said the feelings could be brought on by this migraine though and it wasn't the first time she had heard the 2 together.

The things which are making me slightly skeptical are that the visuals are pretty constant. From what I knew of a migraine it would come and go? Not always be there?

Also anxiety, I do suffer from this whichever way I look at it. However with this, I've always felt if I didn't have this constant visual feeling I wouldn't be anxious...perhaps as this clears up so will the anxiety...

She did mention she would pass on some medicine for my GP to give me and also a few others to try if I didn't get any relief from the first one.

My DR onset came around a time when I was under a lot of stress and my routine changed with my job. The doctor did mention how the routine change could have well been the trigger to this.

Next week I should hear back from the doctors with the medicines so will definately update.


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## Visual (Oct 13, 2010)

It seems that 'migraine' is a somewhat broad diagnosis, almost a catchall. Just as when a doctor can't figure out what is wrong and tells you it is just depression or anxiety. (I've known people who died from the simple misdiagnosis of anxiety)

Some migraines have only the symptoms of very bad headaches to the point of nausea. And may respond to PRN meds such as Fioricet. http://en.wikipedia.org/wiki/Fioricet Sensitivity to light and noise are typical.

'Classic' migraines are as above but also present with an Aura (visual distortion) See examples http://en.wikipedia.org/wiki/Migraines#Aura These also usually respond to Fioricet.

*Migraines are believed to be a neurovascular disorder* http://www.ncbi.nlm.nih.gov/pubmed/20572569

More recently we hear the term "Persistent Migraine" which covers just about any visual disturbance that continues. Visual snow, for example, has been called a persistent migraine.

<BEGIN RANT> Personal story - skip if too boring
When my symptoms started, it was suggested that it was migraine. Even one Neurologist said as much. Yet other Neurologists said it is impossible to have a constant migraine for months or years. Thus I have to agree with this statement, "_The term "migraine" itself is one of the most commonly misused terms in modern medicine by both doctors and patients alike._" http://www.myhousecallmd.com/archives/2370

I have a particular bitterness about 'painless migraines that never stop'. Because my local doctors shrugged their shoulders, said 'migraine' and walked away, the real cause of my visual problems remained unknown. This was due to a slow poisoning that continued for 5 months until I figured it out. It took 2 years to find a specialist that understood what was going on - and it only took 1 visit for him to know. Now had I been correctly diagnoses those first few weeks, my neurological damage would be MUCH LESS than it is now - thus, my bitter reaction to lumping neurological disorders as migraines.

I have to be forgiving of my doctors and realize that they are human and that my case is very unusual. But I still have no tolerance for laziness or knee-jerk diagnosis that is common.

Certainly I am glad it isn't multiple sclerosis, stroke, or some such thing. But it has never been about what one wants. It is about getting a good handle on the situation - effective/accurate diagnosis and treatments.
<END RANT>

Now *Timer*, that doesn't mean the various meds your doctor is going to try will not help. We are all hoping that they do. And many of these are, as Forestx5 pointed out, also used for seizure treatment. The most exciting thing here is the door has opened for your doctors to try to treat your problems with more seriousness.

Your link listed: Beta-blockers, Tricyclics, Pizotifen, Anticonvulsants, Methysergide, and Flunarizine - so you got lots of stuff to try. [Of course, can't resist pointing out that both Pizotifen and Methysergide reduce serotonin since doctors often hand out SSRIs.]

Did you not already try beta-blockers? (can't remember)

*RE: the diagnosis. This is always dicey. I believe DP/DR is a neurological perceptual distortion caused by any number of things we aren't able to understand -- medicine doesn't understand. &#8230;. But a chronic state of DP/DR, mainly on its own would not be a silent migraine.

in my experience and that of others, anticonvulsants seem to be the most successful (to one degree or another) of helping with DP/DR*

*Dreamer*, thank you for your insights.

If DP and/or DR was simple a migraine, it would have a standard treatment protocol instead of what it is (isn't) now. Nevertheless, DP/DR can be a symptom of an underlying neurological problem, so an individual should always be 'neurologically' investigated.


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## Midnight (Jul 16, 2011)

Visual said:


> If DP and/or DR was simple a migraine, it would have a standard treatment protocol instead of what it is (isn't) now. Nevertheless, DP/DR can be a symptom of an underlying neurological problem, so an individual should always be 'neurologically' investigated.


My GP refuses to let me have a brain scan before I see a psychiatrist, it's fucking irritating.

Like someone said above, people have died because some prick doctor told them 'oh, it's just depression' / anxiety etc etc.

In my opinion, DP/DR is caused by some problem in the brain. It's too much of a reality shift to just be anxiety...


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## Timer (Feb 10, 2011)

Visual said:


> Now *Timer*, that doesn't mean the various meds your doctor is going to try will not help. We are all hoping that they do. And many of these are, as Forestx5 pointed out, also used for seizure treatment. The most exciting thing here is the door has opened for your doctors to try to treat your problems with more seriousness.
> 
> Your link listed: Beta-blockers, Tricyclics, Pizotifen, Anticonvulsants, Methysergide, and Flunarizine - so you got lots of stuff to try. [Of course, can't resist pointing out that both Pizotifen and Methysergide reduce serotonin since doctors often hand out SSRIs.]
> 
> Did you not already try beta-blockers? (can't remember)


Completely agree that its the most generic answer for something wrong with your head - a migraine. Coming out saying that its also one which I cant feel a headache feels even more of a copout. However - as you have stated I think the key thing here is the fact that I am not allowed on the path to trying medicines which also cross over to DP/DR treatment such as lamictial, things which have helped people with HPPD such as Keppra, where as in the UK trying to get anything like this as I have proved is near on impossible. I was told I was depressed, good luck and lets see where you are in 3 months....well I know it would be the same place as my vision is was the same 3 months before that....

I didnt try beta blockers before...the neuro-optomologist did suggest them but as I suffer from asthma my GP decided against them.

Anyway still waiting for the letter through from the neurologist with instructions for my GP.....


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## forestx5 (Aug 29, 2008)

Midnight said:


> My GP refuses to let me have a brain scan before I see a psychiatrist, it's fucking irritating.
> 
> Like someone said above, people have died because some prick doctor told them 'oh, it's just depression' / anxiety etc etc.
> 
> In my opinion, DP/DR is caused by some problem in the brain. It's too much of a reality shift to just be anxiety...


Psychiatry is the "triage ward" of neurology. Incentive based health care is happy to send you there. For incentive based health care, brain issues are a can of worms. . Psychiatry = Trafficking in pharmaceuticals by trial and error.


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## forestx5 (Aug 29, 2008)

forestx5 said:


> Psychiatry is the "triage ward" of neurology. Incentive based health care is happy to send you there. For incentive based health care, brain issues are a can of worms. Psychiatry = Trafficking in pharmaceuticals by trial and error.


My silent migraines always follow the same pattern. Blind spots followed by formation of shimmering sawtooth wave.
Starts on one side, progresses to both eyes. Sawtooth wave dissolves into snow and then it's gone. The whole process takes 20-25 minutes.


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## Rozzer (Mar 15, 2012)

Timer, any update on this??


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## Timer (Feb 10, 2011)

Update :

OK - Just got the letter through from the neurologist which also goes to my GP to administer the medicine. I will break it down so its a bit easier to digest.

Treatment Plan :

1. GP to commence amitriptyline starting 25mg nocte. This may be increased further if required to 50mg then 75mg nocte.

2. Trial of Sumatriptan 50mg (max 6 tablets per month) on onset of headaches.

3. Alternatively Asprin 600 - 900mg plus or minus PPI for less severe episodes.

On days without headaches acephalgic episodes were explained, feelings of disequilibrium and derealisation (incidentally I never mentioned DR in the appointment as I didnt' want to lead her a certain way) feelings of generally disconnected episodes and "swimmy" with disequilibrium. There has been no progression in these episodes, triggers may well be - late nights, lying in, skipped meals, alcohol.

The episodes 'Timer' is describing are chronic migraine with additional acephalgic episodes. I think he would benefit from a migraine prophylaxis. Amitriptyline should also aid in poor sleep 'timer' is facing and a good sleep routine should help.

Should he be unable to tolerate this then he could be tried on sodium valporate 200mg bd, increasing to 400mg bd after 2 weeks. Migraine prophyaxis should be tried for 6 months before a trial of withdrawal.

It is likely the changes in routine following a work situation has triggered these episodes.

So...there we have it, thats all the info I have. I will go and pick up the medicine next week and hope for the best! Trying to just crack on as much as possible in the meantime and I have been able to do more cognitively recently. However the 'DR' or whatever it is is still as present as ever.

Anyone have any info on any of the above please feel free to share.


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## Rozzer (Mar 15, 2012)

Timer, thank you so much for describing your treatment plan, it sounds like you've got a really good doctor.. Can you please tell me, do you have any visual disturbances?


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## Timer (Feb 10, 2011)

Rozzer said:


> Timer, thank you so much for describing your treatment plan, it sounds like you've got a really good doctor.. Can you please tell me, do you have any visual disturbances?


No worries at all, hopefully it helps me and maybe this information will help someone else as well.

Here is a link to my thread on the visuals I was / am suffering from. To an extent they have improved but are definitely still there.

http://www.dpselfhelp.com/forum/index.php?/topic/27786-vision-distortion/

Will update the thread as I begin to take the meds next week.


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## Rozzer (Mar 15, 2012)

Great, thanks for sharing.. And please keep us updated.. Good luck!


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## Timer (Feb 10, 2011)

Quick update : 2 Days in amitriptyline is definitely aiding my sleep, 2 uninterrupted nights sleep, however waking up groggy and more DR'ed if anything, might be an adjusting thing though, hoping so anyway. Going with it for now and keeping busy.

Day one - had a bad headache, so took Sumatriptan, it cancelled out the headache and felt slightly better for a brief time, still DR'ed though....

I do have a cold at the moment which could be adding to the groggy feeling, gonna give it a few weeks before making any decisions on how Im feeling. Will update then.


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## Rebekah (May 16, 2009)

forestx5 said:


> Psychiatry is the "triage ward" of neurology. Incentive based health care is happy to send you there. For incentive based health care, brain issues are a can of worms. . Psychiatry = Trafficking in pharmaceuticals by trial and error.


Hey I like your observation. My psychiatrist is trying to convince me to keep trying to take an antidepressant, and I've told him that as soon as I take even a very small dose, I get very bad anxiety. My problem has never been treated successfully with any psychiatric med. The doc is even surprised that I cannot tolerate any of the meds he has given me, except Xanax, which just calms me down. Why aren't there any meds to successfully treat high anxiety? Mine is so bad that it causes me to disappear (dp). I will be seeing a Neurologist in a few weeks, and I hope he does have some answers. My drug of choice that works better than any pill is to stay away from mean people.


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## forestx5 (Aug 29, 2008)

Timer said:


> Update :
> 
> OK - Just got the letter through from the neurologist which also goes to my GP to administer the medicine. I will break it down so its a bit easier to digest.
> 
> ...


Amitriptyline is a tricyclic antidepressant that is noted for a hypnotic effect that can be helpful for insomnia, if taken before bedtime. Usual tricyclic side effects of cotton mouth, blurred vision, etc. They become minimal as you adjust to the med. Dosage for depression can be 2-300mg, but`I found it helpful for sleep at doses of 75-100mg.
Sodium valproate is an anticonvulsant/antiepileptic drug similar to "depakote" and is used to suppress seizure activity. Sumatriptan is similar to seratonin and it treats migraine by vascular constriction.
Sounds like a plan. Good luck with this treatment.


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## Timer (Feb 10, 2011)

Stopped taking the amitriptyline - was helping me sleep but nothing else really. Felt my DR was slightly worse on it at times also.

Taking Sodium Valproate now. Currently on a dose of 450mg a day slowing moving up to 750mg. Been a week or so, nothing much to write home about as of yet.


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## Timer (Feb 10, 2011)

Latest:

Ok - off of Sodium Valporate now, no real effects from this med. Maybe made me tired? Hard to tell these days what exactly causes what.

Emotional situations have eased up in my life which can only help. Also gonna be living in another country for a few months, change my situation, learn a new language...that sort of thing.

Starting Lamotrigine tomorrow, been prescribed it by doc. I have some Celexa from before, does anyone think it might be worth combining them or can the Lamotrigine work on its own?

Also getting referred BACK to the neurologist to have some scans and check the blood flow in my brain apparently.

Any advice on Lamotrigine? Im not sure my dosage till I get the prescription tomorrow AM.

The main issue is still my vision / DR.


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## insaticiable (Feb 23, 2010)

Timer said:


> Latest:
> 
> Ok - off of Sodium Valporate now, no real effects from this med. Maybe made me tired? Hard to tell these days what exactly causes what.
> 
> ...


When I was on a higher dose of Lamictal (300-350mg), I remember having some improvement in my DR/vision...things seemed more clearer...more bright. Initial doses of Lamictal start at 25 mg, and then you titrate 25-50mg every 2 weeks. It is a slow and tedious titration process because of a risk of developing a certain deadly rash. Therapeutic doses are anywhere between 200-300 mg from what I've been told. I currently take 150 mg.


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