Migraine

In January 09 I will begin my 6th year of searching for answers. In Jan. 03 I left a job of 20 years and relocated to another state to begin college at the age of 38.

The first week I was there I experienced a horrible night where I woke up with the room spinning out of control and I couldn’t get it to stop. I had never heard of vertigo before so the experience for me was terrible enough to send me to the ER.

From that day on I have had the following procedures done by three neurologist and various other specialist including some highly trained specialist at the ST. Louis School of Medicine: 4 MRI’s, ENGs, EEG’s, Several balance testing facilities and as of today, after seeing at least 12 doctors they are all confused because none of my “hardware” is showing signs of a problem.

It wasn’t until I read a book on Migraines that I have found a doctor that is now investingating this and has put me on Klonopin and Diazapam for relief and they work for the most part. I had severe headaches and stiff necks for the entire four years I was in school, mostly located in the back of my head.

The horror would never leave because I think my stress levels were out of sight all the time so I really never feel good except when I first wake up. The one symptom that all the doctors say they have never even heard of is what I describe as “shut down.” Every night when I close my eyes my body/brain experiences a thirty minute period of time where I hang on the edge of vertigo but don’t go all the way. I sense “darting” sensations that shoot through my body as though someone has snuck up behind me and pretended to shove me over the edge of a cliff. This excitatory sensation robs me of sleep and for two years I went for days at a time without sleeping until I just collapsed.

Today, my night terror is much better because my brain is grown used to this. I still have a shut down session each night but it is much more mild that in years past and the diazepam seems to work. I do wonder though if I am not suffering from a Basiliar type migraine.

I seem to always have a vision impairment now as well as ringing in my ears brought on mostly by an irregular sleep pattern. My vision is almost always somewhat “woosie.” I don’t lose my balance but I experience worsening vision problems when I am tired, hungry, or experience an anxious moment like an unexpected confrontation such as is common as a Corrections officer which I was for a while.

I feel almost perfectly normal when I rest good. I mean it takes about two days of sleeping at night (I work nights) and eating right before the ringing leaves and I can see normally. Light kills my eyes, and busy places like a mall are a killer as well.

I am scheduled to get my magnesium levels check this week so my doctor can have this information ready when we meet on the 18th of this month. I have sent her a detailed history of my issue and she seems to think migraine is the problem, but says my type A personality, and high strung DNA are making it worse.

Any advice for that can be offered would be graciously accepted, and forgive me for being long winded, I just am kind of hoping to get some answers. Thanks for taking the time to read and reply, I know most are busy, again thanks.

Edited by moderator. Please see our "Start Here" folder for information on breaking up paragraphs for easier reading. Thanks!

Hi and welcome to My Migraine Connection!

Wow! I'm sorry you are experiencing the vertigo and sleep issues. I do have a question about the sleep issue though - was this going on BEFORE medications were introduced or since you've started taking something?

The reason I ask is because it sounds similar to what I went through when I was on Amitriptyline. This and the weight gain made me decide to stop taking it.

Not knowing exactly what is wrong is a horrible and scary feeling! I remember when I was finally diagnosed with Migraine that it was almost a relief to know that yes, something can be done to help me.

You mention a new doctor that is helping you - that's great! Is this doctor a Migraine Specialist? That would be your best bet at this point, if you do feel it is Migraine that you are experiencing.

We have tons and tons of information on types of Migraine and treatment options.

Types of Migraines and Headaches

We also have the full list of preventives used for Migraine treatment: HERE.

Also, be sure to check out our START HERE folder for all forum policies and guidelines.

Please let us know if there is any other information we can provide for you. If you have any questions, please feel free to ask!

Welcome again!

Hi, Shamrock, welcome to the forum. We're glad you found us. Never worry about long posts on our forum. We have plenty of space.

After you look at the Start Here folder, take a look at this article:

• Learning About Migraines and Headaches - Where To Start

Then keep the questions coming. We are glad to have you with us.

Hi Eileen and Nutcracker,

First, thanks for the patience. I apologize for the improprieties.

Eileen, my doctor is new because I have relocated to WV from Missouri. She has taken an interest in me beyond what I have experienced before so in that sense she is new. She sent me to Huntington WV to an Otolaryngologist who looked at my MRI’s, CT’s, ENG, EEG, and other testing and said he is suspicious of Migraine. So, my PCP is just now getting her feet wet so to speak, so she is no specialist but may be heading me that direction.

I was told to order and read a book on Migraine by the American Council of Headache Education which I did and found it very informative. I actually wrote an extensive report on the findings from the book and included my personal profile of symptoms and triggers and sent the info. to my PCP. She actually wrote to me and thanked me for being proactive and aiding her in treatment? Can you believe that…?

She sent me orders to have my Magnesium levels checked and I completed that today and will set down with her on the 18th to discuss her assessments of the Otolaryngologist’s report and my Magnesium levels then.

Eileen, my night issues were there prior to meds and continue to this day. If you can think of a direction I can help my PCP please let me know. I will be checking this site often for information. At this point the jury is still out whether we are dealing with Migraine or not, but from what I am reading the symptoms are pointing heavily in that direction.

I really appreciate your input and patience.

Thanks again.
Kelly

Hi Kelly and Welcome to MyMigraineConnection.

It sounds like you have been through an awful time. But you found us, Eileen and Nutcracker have given you good information to start you off about Migraine disease and headache disorders.

We have some information on Basilar-Type Migraine that may be interesting to you, just click on the blue writing. It is possible to have more than one type of Migraine and/or headache disorder at the same time. For example, I have Menstrually related Migraine and Tension-Type Headache just to name a few. Something else to consider is Idiopathic Intracranial Hypertension, IIH (formerly called PTC)due to the tinnitus and continus intractable head pain. We have information on this HERE.

Since you are in Missouri, we have an excellent Migraine specialist on our list you may want to check out. I see the other moderators gave you that link.

Let us know how else we can help, ok?

Hi Nancy,
Thank you for taking the time to offer comfort and advice. Clarification, I use to live in Missouri but move to West Virginia a year ago to pioneer a new church plant in Charleston, WV.

The link to Intracranial Hypertension was interesting. This could help explain the constant vision issue that seems to stay with me. I get stiff necks a lot also, but don’t know if they are related.

One thing is funny though, you know how your mind can become pre-occupied with a thought and you just sort of drift out into space and “Zombie” out? Well, when I do that, I snapped out of it by a sudden “shock” sensation that shoots through my body as though I have just went through a roller coaster dip at mach one!

I am making journal entries to for my doctors visit on the 18th and your input concerning Intracranial Hypertension will be mentioned. Thanks again for your concern and professionalism. I really do appreciate all the support I have found here. I have learned that our doctors need help in figuring some of the more difficult diagnoses out.

Kelly

Hi Kelly and welcome to the forum family! It's great to have you here. I see you've been given some great information already so I'll just add a few things I think you might find helpful.

You mentioned keeping a detailed journal, you may want to use our Headache and Migraine Diary to keep your information on. That link will get you to a free downloadable diary. I keep mine on my computer for easy editing every month.

I also see you have a doctor's appointment coming up so here's some articles on a successful visit:

Migraineur's Guide To a Successful Doctor's Appointment

Coping with Busy Doctors

I hope these help and again, welcome to the forum!