I'm new to depersonalisation and migraine- please help!

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New Member

Date Joined Sep 2010
Total Posts : 1
   Posted 9/12/2010 5:59 AM (GMT -6)   
Please excuse me if I am posting incorrectly I am new to forums too. I have turned to the internet as I, as many of you may agree, feel that doctors have little knowledge in the field of migraine and I would like advise and colsolation from those who experience it first hand.
I am 21, do not suffer from anxiety and have always been in very good health. about 6 months ago, after enduring a very stressful 2year relationship, I experienced my first migraine. I lost my vision while driving. This happed every three days afterwards until a doctor dignosed migraine and started me on preventative meds. I was terrified as I had no idea what migraine even was. No one in my family has ever had migraine.
After my second migraine, a very strange sensation came over me that the world around me did not appear'real'. I desovered that the name for this is 'depersonalisation' as I researched it online. It got so bad that I had all sorts of symptoms, including very physical symptoms. I feel as though I am not here, like I am a ghost, and very closed in. My vision wavers constantly as though I am recovering from a heavy night on the booze. This has perpetuated for 6 months now although I have not had a migraine for about 4 months. My doctor is planning on referring me for cognative therapy although I know that this is most definatly physical.
My question is, is this simply migraine? Now that I am a migraine sufferer will I have to live with this feeling forever? I am not depressed but feel I will be if I have to endure much more of this. I acn no longer go out with friends or enjoy life and I always feel too ill. Any words of hope or information would be much appreciated.

New Member

Date Joined Jun 2010
Total Posts : 9
   Posted 9/12/2010 8:35 AM (GMT -6)   
smurf Hi Bilsey. I have been blessed with Chronic Migraine Disease since the age of 12. After 48 years of it, and being afflicted with the "variety pack" I never know what will hit me, or when, or where it will strike, or for how long the episode will last. The medical profession is unable to cure it. There are innumerable causes and triggers to migraine as well as a plethora of symptoms, auras, and other effects. Being vascular in nature and the migraine pain attack causing constriction on the blood vessels, it slows the flow of blood (and oxygen) to all parts of the body, including the brain, which can cause stroke. Depending on the type of migraine you suffer from, dictates how you manage it. Mine is the extreme case, so do not be alarmed, but you asked for help. NOW, the worst and most dangerous is in fact the Ocular Migraine of which you speak. I don't drive any more as losing my vision is injurious to everyone on the road. In addition to experiencing daily vertigo, as well as the other migraine headaches, I do suffer from Oculars and they are excruciating in pain intensity, but the loss of balance PLUS vision puts me at risk. People don't see a visible disability so assume I am drunk or on drugs. I need help, not criticism. I have a Migraine Assistance Service Dog named Bubbles. She is a 145-lb beautiful black Newfoundland dog - my balance and eyes. I trained her and got her medically and legally certified. I am never outside without her.
if you wish to talk about this privately. I am here for you as I fully understand what you're going through. God bless and take care.
Val and Bubbles
I have removed your email addy for your own security. Ann

Post Edited By Moderator (Annuk) : 11/8/2011 4:13:18 PM (GMT-7)

New Member

Date Joined Sep 2010
Total Posts : 1
   Posted 9/12/2010 3:33 PM (GMT -6)   
Hi bilsey,
I also had the depersonalization episode when I was 21 years old. It would come and go for a very long time. I was doing my field placement for college at a state mental hospital and I thought I was crazy. I had also just gone through a very stressful time. The second time I had it was after an inner ear problem that caused me to be dizzy for a month or so. That was 30 years later. I had my first zig zag migraine aura when I was 30. I've never had the headaches (although now I'm thinking those few headaches that I thought were sinus were actually migraine). Anyway, 3 weeks ago, out of no where, I went partially blind in my right eye with flashing white lights. Terrifying. For all these years I have thought the off balance feelings I sometimes get were due to sinus problems --- although I never get other sinus symptoms. Try taking a sudafed --- just one 4 hour pill---- it always worked to take away the off balance problems for me. Maybe even try a zyrtec. I don't know if the depersonalization problems in college were due to inner ear or not. Now, I am learning it may have been migraine. At any rate, it won't hurt to try a sudafed (if you don't have HBP). You have to get them behind the counter at the pharmacy now. Make sure and ask for the 4 hour pill --- not the longer one. Just take one pill -- not two. I've never heard that depersonalization disorder is part of migraine. I thought it was a type of anxiety disorder. However, if that is the case why did I get it after the inner ear problem. So many questions. I found your post when searching for answers to my partial blindness aura. I've never posted before, but just had to let you know that the depersonalization will eventually go away. Good luck.

New Member

Date Joined Jun 2010
Total Posts : 9
   Posted 9/12/2010 7:19 PM (GMT -6)   
Dear Bilsey and Auralady - from the sounds of both of your symptoms combined, I have had all of them and they are all encompassed in the inclusionary components of Chronic Migraine Disease. The flashing lights can be either migrainal or the commencement of retinal breakdown. I never prayed for a migraine, but that time I certainly did. The inner ear, or balance, is the vertigo portion of the migraine disease, and all of your vision situations point directly towards migraine, particularly the ocular migraine. For the pain, you really have to know what works for you. My system reacts well to Aspirin-based drugs but most on the market are Acetaminophen-based. Depends what settles individual pain as all of our systems are different and what works for one of us may not work for all of us. I wish you well - both of you. It's no picnic - not by a long shot.
I watched my mother succumb to the disease, but the best way to deal with it is to try to take it on - head on - and deal with the different situations as they arise. On-line research, combined with "living with it" has fortified both my ability to stay in the workforce for over 40 years, complete high school, some university, do charity work, all the time caring for abused and/or abandoned animals as my personal pets (therapy clinic, if you will), and yet dealing with bouts of pain such that a normal person would not be able to, know how to, or even care to tolerate. When you have chronic migraine disease you must educate yourself as thoroughly as possible and then build you lifestyle such that your "home base" is in fact your "tranquility base". It is a complex disease, with attacks of a mixture of nausea, disorientation, speech problems, memory deficiencies, patchy numbness in different parts of the body, vertigo (balance), sharp and dully pain (you tend to build up a pain tolerance level over time - at least I had to in order to be able to continue. You might call me a survivor, but lifestyle, diet, activities, hobbies - many things you would normally do with friends - tend to have to be curtailed in order for you to keep going. At work, the attacks were so frequent (some without notice) that the resulting fatigue from fighting them caused me to have to go into work earlier than the others and stay later than them, just in order to be able to "keep up" with their pace. It may seem like a living hell, but I have met so many wonderful people who suffer like I do, and still wear a smile and dry to do the very best that they can despite the fact that they too are in great pain, and accompanying disability, a lot of the time. Stress, I must add, is neither a trigger nor a cause of Migraine; HOWEVER, stress acts as a catalyst and exacerbates the triggers and causes, so that was why I injected "lifestyle" adjustment. I could go on for pages on the subject but I feel that you have the main skeleton of the situation that you may be forced to have to deal with. The medical profession will not be able to help, except with the prescriptions for medication for the severe pain. It is really you, yourselves that need to find out which product works best to give you comfort. Dark room, cold compress, soft music, pets, fresh mug of Salada Orange Pekoe Tea (or whatever) and your pills - and in my case, my service dog and my 4 cats - are generally where I end up when it gets the better of me. I hope some of this can assist both of you. Trust me, I DO feel your fear and frustration heading into this "foreign land", but there are those of us here that care, and we have been through exactly the stage that you are both experiencing. Years of conditioning, tolerance, frustration, depression from it, exhaustion as well - as the attacks take energy from you while you are trying to get through them, all of this and more, and we are here for you anytime.

and I hope that this will ease your fear, as you are NOT ALONE.

Val and Bubbles
I have removed your email addy for your own security and would refer you to the Forum Rules.  Ann

Post Edited By Moderator (Annuk) : 11/8/2011 4:06:46 PM (GMT-7)

New Member

Date Joined Jun 2010
Total Posts : 9
   Posted 7/20/2011 8:24 PM (GMT -6)   
Dear Bilsey and Auralady,

I just opened up the forum and found that my(our) old email address is still showing. It's VAL and her big black beautiful female Service Dog, BUBBLES.
Over and above the Chronic Migraine Disease, I was diagnosed with Degenerative Disc Disease in my lumbar spine and hips, plus Macular Degeneration in both eyes, as of the end of January 2011.
But life goes on, as I now have my soulmate and best companion in the world. BUBBLES does the following for me, so that I am never afraid to leave the house:
Ocular Migraine Stroke - she both alerts me and handles it accordingly;
OMS resulting in visual field blackout - she senses and guides me to safety/home;
Migraine alert by forcing me to sit down by pushing against my legs;
Disorientation is picked up on instantly and she leads me in the correct direction;
Vertigo is sensed when I lay hands on her shoulders and hips, and she stands rigid in position to balance me until I release her.
She has had no formal training - she is a rescue dog turned service dog, and handles all of the above like a pro - STRICTLY BY INSTINCT.
The Newfoundland dog breed is the most incredible friend to have.
MY NEW EMAIL ADDRESS, should anyone have any questions, is:

We both wish all of you the very best, always.

Val Frost and BUBBLES, my Newfoundland Service Dog
I have removed your email addy again for your security, and would refer you to the forum rules.  Ann

Post Edited By Moderator (Annuk) : 11/8/2011 4:08:39 PM (GMT-7)

New Member

Date Joined Nov 2011
Total Posts : 1
   Posted 11/8/2011 9:22 AM (GMT -6)   
Hey Bilsey,
I hope you are better and not worse as of my writing here. I don't know enough about the migraine aura syndrome to comment much on that aspect, but I have personal experience with migraines all of my life in many forms. I have had migraines myself since around age 20, and I'm 40 now. My father, aunts and uncles and younger brother also have dealt with this.
My thoughts turn in part to my brother, he had severe migraines in kindergarten. He was given many CAT scans before migraine was diagnosed, probably because of his young age. If I were you I would want to look further into this, by having a CAT scan if you haven't. I admit your symptoms worry me. If you had a family history of migraine and this was common I might have said otherwise. But the symptoms being there even when the migraine isn't makes me wish for your brain to be checked, to be alright. I say so because I have seen too many doctors diagnose without ruling other things out first.
My other thought is maybe you would feel better by changing your diet. There is a link between celiac disease and migraine. It would be simple enough to go on a diet avoiding wheat and other gluten entirely. If you feel better it would be a dramatic improvement. If not, then no harm is done.

I wish you well, very much.

Veteran Member

Date Joined Jan 2006
Total Posts : 1308
   Posted 11/8/2011 6:11 PM (GMT -6)   
Hi Bilsey1,

Welcome to Healing Well. Sorry to hear that you have been suffering so much. You will get the best treatment and help from a Neurologist who is a Headache Specialist. Most general Neurologist do not know as much as they like to think they do about headache!!!

You will get optimum treament if you can find a Neuro who is a Headache Specialist, even if you have to travel some distance, it will be worth every penny!!! I did, and I have never regretted it!!!!

take care

Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

New Member

Date Joined Nov 2011
Total Posts : 1
   Posted 11/25/2011 10:07 AM (GMT -6)   
Hi All

I am new to the forum but have been reading your posts. I have been suffering from what the doctors call chronic migrains now for 13 years. I wake up with a headach and go to bed with the same one it never leaves me its constant. I am on so much medication at the moment to try and mask them that i feel quite drugged sometimes. I sleep alot gained so much weight as the drugs have slowed me down. I sometimes wonder about them being migrains though as I have yet to have any visual disturbances. I have had an MRI and lumber puncture to see if there is any problems there but nothing shows up.

What I am getting now though and more and more often is depersonalization I first noticed it a few years ago when i was driving I would feel like i was out side myself watching myself drive and i would get tingling in my feet and then start to feel real dizzy.

5 months ago I blacked out on the motorway on my way home from work and to this day I do not know how I got from the inside lane to the hard shoulder without an accident. Since then other than a couple months when the doctor asked me not to drive I havent driven other than in my home village as I dont feel safe to drive out on the open roads as I know it might happen again as it wasnt the first time I had felt that way that was just the first time I had blacked out.

These headackes and depersonlization attacks are taking over my life. I am going to loose my job as I cant get to work. I scream at the kids sometimes as I cant think straight my head hurts so much all the time. It would be nice just to have a day free of headaches lol just one.


New Member

Date Joined Oct 2011
Total Posts : 6
   Posted 11/28/2011 3:26 PM (GMT -6)   
I have been having migraines for 35 years. In that time, I have learned more information than I could possibly include here. There are MANY different kinds of migraines. Not all migraines include visual disturbances nor do all migraines include depersonalization. In fact, some migraines do not include the pain in your head at all. It sounds like to me you need to see a good neurologist to narrow down the type of migraines you are experiencing and then tailor your treatment for that type. You may have seen neurologist previously in the 13 years; however, it is hard to believe that in that time they have not been able to offer you some type of treatment for your symptoms. In the mean time, you to keep a log of your headaches and document all symptoms, food you eat, time of day, amount of sleep you got, exercise, if you had sex that day, time of month (i.e. in terms of your menstrual cycle) etc. This will help you and your doctor to see your triggers, and specific symtoms. You may have done these things before...but it is obvious from your post that you have not been able to gain any type of control over your migraines. This is not to say that all of us, do not experience migraines even with the best treatment plans, but they should be fewer, less severe if the treatment plan is right for you. Another important note, is that some of us experience some changes in the types of migraines over time. This is often due to changes in hormones, life changes, other illnesses, etc. Of course these are all just suggestions, but they have worked for me in the past. Lastly...there are tons of reliable resources on the internet, just make sure you look at the reputable ones: from prestigious medical hospitals/schools, the national headache foundation, etc. Then write down your questions before you see your neurologist. There are also other disorders that include depersonalization, dizziness, and blackouts as symptoms. Lastly, neurologist do not need to do a lumbar puncture or MRI to diagnose migraines. . Remember only you can be your own advocate, but to do so effectively and get answers you have to educate yourself and provide the doctor with enough information that they can diagnose you. I will get off here now, good luck with your finding answers!
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