migraine and sleep deprivation

   doesn't seem that I am sleeping any more than a few minutes a night. What appears to be happening is I sleep for a few minutes I'm awake for 2 hours I sleep for another 5 minutes I'm awake for a few hours again. Every night is horrific nightmares in there are more symptoms as well that I have been discussing in my facebook support groups. .i AM PTSD so I know that that is contributing to how little I sleep and the fact that the sleep with such poor quality. Of course people with fibromyalgia don't usually get more than 2 or 3 hours of sleep a night so there are a lot of things going on.

I found out that my insurance totally covers having a sleep study.

In a few days I have my appointment.   like a consult. They give patients the option of either just coming in and doing the sleep study right away or having an appointment first to discuss concerns or questions.


I have had a migraine every day for the lAst 2 months. It waxes and wanes in severity.  the medicine helps to a certain degree,but I just don't know what can be causing these migraines.

Obviously the fact that I sleep so little can definitely contribute, obviously when I had chainsmokers living below me that was a huge factor but they don't live down there anymore.

If I had 75 dollars I would buy  a mold test kit. in my last 2 months in my one bedroom apartment in Hampstead Maryland was when I discovered that that apartment had a very severe mold problem. One of my neighbors discovered it in her unit and little by little it was determined that most of the units had bad mold. But the owners denied the severity of the problem and did not want to spend any money on trying to get rid of it

 .i my lungs hurt my throat is sore a lot my voice is raspy so it is possible that when the maintenance man flooded my apartment by busting water heater that mold Grew, on the other hand this is a very dry climate so I just simply do not know.

But the sleep deprivation and the migraines are definitely a huge contributor to being at 80 to90% homebound.there is such unpredictability with my health that I missed 3 appointments in 3 days last week. I would love to go back to work part time but I'm going to have to start with just one day a week because I don't want to set myself up in a job where I'm constantly missing work due to illness. This is a huge advantage of going through vocational rehabilitation they already know in advance what your disabilities and limitations are.

"Pain "management"

As you know there are always many hoops to jump through.  With my current as well as my last apt. you can be evicted if you are caught drinking, even a glass of wine.  Currently even though I have the medical marijuana card, there are 2 places that are not permitting me to use it; the pain management office and one individual who is forbidding me to use it if I want her help with something.

I believe that the mmj (med. marijuana) is somewhat safer then  pain meds but oh well.  The pain management nurse agreed to raise my dose last week which I think will help a lot, yet there is still a great deal of pain, enough that most days I can't stay out for more then 4 or 5 hours.

As I recently blogged about, I went to physical therapy to get a tens unit which can help a lot with pain management.  She said there is no guarantte that medicare will pay for this and if they don't you have to mail it back.

The tens is a good distraction from pain temporarily, however medicare called me to tell me they wojn't pay for it because they paid for one in 09.

When I was forced to flee the violent situation I was in in 4/10 and 4/11 I was forced to leave everything behind that had not already been destroyed or stolen.  One of those things was the tens unit.

At some point I may do pool therapy (if water is very warm) medicare will pay every penny of that and swimming is my favorite sport.

At this point I haven't found any relief from the neuropathy which is very severe and disrupts my sleep.

"The only updates i have"

I know this is far more boring then when I was blogging about violent crime and such!  I am just beginning to feel safe.  Safe enough that I have been decorating even though I have no plans to stay in the apt. long term.  Bought some pretty tablecloths and vases and today I bought a plant that is a mix of many gorgeous flowers.  Hoping to keep it alive. 

I'm home a lot and I love lots of color.  beginning of may I will buy some fresh flowers too.

So, I'm only getting out every other day.  I never know what the day will bring.  i.e. yesterday I woke up naucious again with a very severe headache.  Your too sick to sleep and your too sick to stay awake it really feels like torture.  I did two doses of the migraine medicine but it didn't kick in til evening.  I don't do much in the way of sweets I have lost a lot of weight.

Got in with the g.i. doc and asked him if we can do the colonoscopy/endoscopy as an inpatient due to me not knowing who to ask to stay with me all day.  They won't do it unless you have someone babysit you all day.  The doc said "there is absolutely nothing I can do to help you until you figure out how to get these tests"

Despite his incompetent support staff he is not.  He is very compassionate, I've met him one time before and he has great bedside manner.

I'm also going to go to an orthopedist to try to find the source of:

severe knee pain
severe right shoulder and arm pain
severe tailbone pain

The pain meds are not adequate enough for me to be able to leave the house for more then 4 hours in a day.  As I've said before I will not make a life long commitment to life indefinitely if it is my fate to live each day all day in excruciating pain.

"Health Update"

Initially when I began blogging I didn't expect to be talking so much about my poor health.  But it is the deciding factor on whether I have quality of life or not, which you know I do not.

I have been chewing on the right side for 2 months because my insurance doesn't cover dental!  the entire left side of my mouth hurts and I assume I have cavities.

I had the x ray done of my entire back, hoping to determine why I have such debilitating back and tailbone pain.  At this point all I know (from older diagnosis) is that I have arthritis of the neck and spine (and probably knees also)  I know I have degenerative disc disease and coccyxademia. 

I have fibrocystic breasts which has been so pain ful the last 10 days I can barely leave house or get dressed.............................

My right knee is killing me and I often limp.  It hurts to stand and to walk

The pain management doc raised the meds a little bit.  This last time they had me see their n.p. and she was brilliant!  I told her that if the meds don't work this time then I will try the mmj again.

It's critical also that iget an eye exam because folks with severe myopia are at higher risk of retinal detachment.

Last night I don't know where my neighbor was but I slept through  the night which can only mean that her and her kids were not there.  If I slept like this every night it would make such a diff. to my quality of life.

"Weak stomach, don't read this"

Very very weak today.  But it's a vicious cycle because the more you lay around the more you begin to develop other health issues (which I am)

So every day for the last 10 days or so I have awoken with a headache so severe that I could not leave the house until the imitrex did it's work. However, tues a.m. headache was so severe that the meds didn't work and I was viciously nauseous all day with about 8 hours of vomiting.

I think it's fair to say that I'm so sick that it makes it nearly impossible to run around to doctors.

My heater hasn't been working right and I have been using the oven to heat the house as long as I am awake.

I read yesterday that the American lung assoc. warns against it due to possible carbon monoxide poisoning.  when they mentioned nausea vomiting and headaches, I figure I better rush to wal mart to buy yet another delonghi heater rated the safest space heater on the market, and stop using the oven no matter how cold the apt. gets.

So, there you go.

"The bed bug extermination"

I was only given one morning to prep!  With my physical limits, i did not get everything done.  I was told to wash and dry everything i own, but the dryer takes almost 4 hours to dry one load. Although i have reported it, i'm told there is nothing that can be done unless i want to pay a repairman out of my own money.

So for the last 4 days the washer/dryer have been running constantly.  I have seen 2 dead bugs and one live one, however they are doing treatment 2 in 2 weeks.

Little itchy but nothing like before.  I insisted the 45 year old bed be disposed of.  (I hated that they put that in there in the first place)

Benn "sleeping" on the floor which means i don't sleep much.  In order to get o ff the floor i have to crawl on my knees to a chair, put my hands on the chair and hoist myself up with my arms.

Still having nearly daily "migraines" slash severe headaches but the med i was put on, i can't take because it will make me drowsy 24/7.

"Sleep as much as possible"

 I stay in bed and sleep as much as possible because it is the only break from this excruciating body wide pain and crushing weakness.

I still have not received my medical marijuana card, but it's coming soon.

"At the Naturopath/society has gone to the dogs"

Part 1


I go get a bagel at Bagelo*  There are 2 dogs in the store and one is on one of those 32 foot leashes and jumps on me.  I said to the owner "you have got to be kidding me"  (I know this is a health dept. violation and is the fault of the owners of the store rather then the fault of the customers)


As always I was very early even though I was given incorrect directions.  I had 2 take 2 busses then walk on the highway with no sidewalks for about 2 blocks.  I was told to go to the building between 123 elm and 129 elm.

I did that and there was a 2 story building with about 1000 entrances.  I tried to open a couple of the doors to see if anybody knows anything but those businesses were closed.  I asked another business and they told me to go 2 doors down (which was wrong) I asked another business and they told me to go up the stairs (which was wrong)

I called the 1800# to get the directions again.  The secretary said she can't give directions because she doesn't even live in Mountain Town.

I see a customer in a car and luckily she knew where the building was.  I get to the building and realized I had been there before to approach another business.

I hear soft music as if someone might be getting a massage.  I am disappointed to see dog fur all over the rug in the wait room, and I wonder how that happened.

The receptionist is 65 and is I believe inappropriately dressed with a loose hippie shirt open buttons and her entire cleavage visible to the sighted public.

She is very kind and warm and offers me water.

In no time I am in with the naturopath.  She is considered the best in Mountain Town.  She asked how she could help me and asked for a life long medical hx.  Since I record every thing in my journals, I have all the dates memorized.

I tell her that I have abuse in my past that would likely rival anything she has ever heard in her practice.  I tell her I had chronic resp. issues as a kid since I lived at home for 24 years and "dad' was a chain smoker.

I tell her that I essentially stopped sleeping when my parents lost their house in 1975.

And that in 84, my boss told me I look very unhealthy.

In 88 that my partner said to me: "God girl, I barely touched you, how could that hurt?"  (At this point I am pretty certain I have chronic fatigue syndrome.)

"Going out of my mind"

So, i am lucky if i have had 10 hours sleep in 2 months.  It is brutal.  My room mate is crashing around all night and burning god knows what kind of substances.

I am needing to use my inhaler and nasacort.  Even with these I am struggling to breathe.  There is no choice but to stay out from early morn until dark because she never leaves the apt.  At the moment my headache has subsided.  For the most part the combination of baths, ice packs and over the counter headache meds are useless.

She's left all sorts of dangerous and sharp items in weird places.  Made me think yesterday of "Running with Scissors"

Please see my next post on Augusten Burroughs

"Day 5 Migraine"

So, by no means are the migraines the only challenge , but that is what i'm blogging about right now.  Yesterday i was forced to go to urgent care (not wanting to clog up emergency rooms which are over run with the poor)

They gave me a very painful shot in my arm.  It was the first time ever i have had an imitrex injection.  They put it in the most sensitive part of your upper arm.  I screammed out, and then i had a delayed reaction of crying.  They didn't see me crying for a while because i was in the patient room alone.

I think the physical pain and burning of the injection was a trigger to cry about everything that is happeniong in my life.  They are ill equipped to handle that of course.  So the nurse asked me if everything was ok (duh!)  Then offered me apple or orange juice.  Sort of what one might do for a little kid.

I was in the urgent care office for almost 3 hours.  What a waste of resources for medicare.  In lieu of them giving me enough medication each month, i ended up wastijng medicare dollars at urgent care.

I awoke with severe headache again today.............................................

"Each day is the to do list from hell"

Seriously ill and largely unable to do much at all.  But every day is a grueling to do list.  I wish i could tell you the whole thing, but i really can only tell part of it.

The combination of migraines, serious illnesses, and severe sleep deprivation means i really can't get much done at all.

This is day 3 migraine.  My imitrex will not be covered until the eleventh.  On 2/14, the new doctor gave me a shot in both arms for my migraine but all it did was give me 2 sore arms.  If i go to e.r., I have to deal with them attempting to put an i.v. in me and they can never find a good vein.

As long as i'm not sleeping i can't get rid of the headache.  I have to move, but there is practically nothing for those of us on a disability income.

I use an ice pak up to 4 hours a day and transfer it from body part to body part.  It occurs to me if i freeze my entire body i won't hurt anymore.

R\ead article on m.s.  and thought, oh yes, i have all of those symptoms.

trouble walking
neurological problems
blurred vision

Vision has been extremely blurred.  Trying to get around to doctors when you don't even have a car, it really isn't happening.

My insurance covers the eye exam but not the glasses.

"Update on the migraine"

So, by the morning of the 11th day of the migraine, it was gone.  And that was the day that the insurance kicked in to pay for my new package of imitrex.  I haven't needed it but i'm sure i will.

If course there are always many serious health issues with me that never go away some are scary but most of that i am not comfy getting into on the blog.  All i can say is that it keeps my quality of life unacceptably low, all of this mess.

"Day 9 Migraine"

So, what if you are already in excruciating and chronic pain and then you have serious fall?  This has been unreal!  When i am at home (and i reckon i've been living this way since 2000 since being diagnosed with lyme) i just lay in bed and transfer the ice pack from body part to body part!  Sometimes after doing that i have to take a hot bath as well.  I have considered going to the e.r. for the migraine, or the mental hospital to get away from my roomate, but thus far i have done neither because hospitals are also such oppressive places......................................

Just living hour to hour really.

Insurance won't cover my imitrex until 2/21...........well i've made it this far!

"Migraines and severe headaches"

So, i rna out of my headache medicine about 3 or 4 days ago.  Very severe headaCHE and 2 very sore arms from the shots they gave me in both arms.

I called urgent care place one and they said they do shots.

urgent care 2 place said they do a shot or they send you to be evaluated.

i called the e.r., said i do not want to stuff up the e.r. with poor people.  i asked if i can get the sublingual med.  she said she never heard of it and has been a patient herself for migraines.  she said they would hook me up to iv pain meds.  it hurts to get the i.v. so i said no to that

i tried to call my brand new physician but i do not trust the p.a. to take a written message that makes sense and she said there is no voice mail.

whats the point in being sent for test when when i know that the sleep deprivation, heart attack like stress, and second hand smoke coming in the house from the neighbors who are not permitted to smoke indoors.

I guess i'l just have to suffer until the 21st when the insurance will pay for more imitrex.

"I've been shot twice!"

So, after 22 months of aggressively searching, it looks like i finally have a pcp/nurse practioner.  I asked her if she could give me some migraine meds under my tongue because insurance won't cover my imitrex until the 21st of the month.

She offered something i never had before.  A shot in both arms.  She said it will not hurt.  It hurt ver very badly, and 90 minutes have come and gone and no relief.

Nonetheless, at least i have a doc. now

"Initially I wasn't alarmed"

But I read the order sheet some 3x. What?! Indeed I am being sent for an mri because of my blurred vision, trouble with balance, weakness, migraines and sometimes seizures. But what was written on the order really hit me today.

It was worded in such a way as to not alarm the patient. BUT! It said" we are sending you for this test to "rule out" a brain tumor, fluid on the brain, and mini strokes"

Brain cancer is most certainly not the way I'd want to go! My test is in 2 weeks. My tardive dyskinesia is very bad and embarassing. I'd like to go to arts/music camp, but the t.d. as well as the fact that I've pretty much lost my normal speaking and singing voice would prohibit my desire to sing at the festival.

The situation here at home would prevent me from taking any class which requires me to purchase materials. Classes (up to 2 weeks long) would serve as a temporary distraction which might be nice.

For now, my doc. is keeping me out of surgery (for one of the other issues I didn't mention in this post) and is trying me on two new meds for about a week.

fun, fun, fun

I'm reading "Stolen Innocence" a phenomenal biography of a woman who grew up in the church of latter day saints (the one that allows polygamy and encourages it.) She was forced to marry at 14 years old. It's a most wonderful book but it's over 600 pages long!

author's name is Elyssa Wall

The last few days

so, sat. was census

sunday was the e.r.

sunday night, mon. and tues is the migraine.

and tues. day is Vocational Rehabilitation

Sunday I couldn't find the on call doctor's phone number (for my pcp)  so i called the emergency # for the neurologist.

I can tell most but not all of the symptoms here. I was so weak I couldn't walk without hanging onto walls and furniture. after getting a piece of cheese out of frig, I fell onto the frig. door. trouble breathing. plus i gave him a few more crazy symptoms.

Like feeling tingly. Like if you fall asleep you feel you probably won't wake up. So, he said if you don't have anyone who can stay at the apt. with you 24/7 then I want u in the e.r.

So they did the ekg and the blood tests and they said they couldn't find anything out of the ordinary.

Exit diagnosis? Vertigo. But I read the discharge sheet and there was some valuable information there like about ringing in the ears, and fast hearing loss (yes, i have that) and some other crazy stuff. Like the blurred vision.

But us folks with fibromyalgia "look healthy" So, nobody ever validates how sick we are. But I've kept a symptom diary for 15 years. I handed a 3 week symptom diary to my last doc. but he never took the time to read it.

I think this current Doctor is more thorough.

I think it helps if we aren't the only ones who see ourselves as sick. Doesn't everybody need to feel validated?

So, I just point blank asked a doc who I've had for 10 years. "Do you see me as seriously ill?"

He paused for a moment and he said "Yes, I do."

But I am probably more worried about getting my journals into the right hands, and more worried about publishing then longevity

. If the last 16 years of my life goes untold, that would be the real tragedy.

"THE MRI RESULTS HAVE COME IN"

An MRI of my neck and head had been ordered to rule out any lesions on my spine. My goal is to find out why I have nerve damage, get a diagnosis, and find out what I can expect for my future. There is no lesion, that's good news.

  But the MRI shows arthritis in my neck. Well, that explains the debilitating pain at least. In a week, I have another nerve test. It's so ironic that you have to become "dirt poor" before you qualify for decent health insurance in this country. And it's even more ironic that if you go back to work, you risk losing your Medicare and Medicaid.

I'm taking a multi vitamin daily, as that certainly can't hurt. I have crushing headaches that leave me bedridden sometimes for a week at a time. The MRI of the head shows no abnormalities. I believe chiropractic care would help, but insurance doesn't cover it, and my chiropractor is not on a bus route. I am a huge believer in chiropractic. Hmmm. I should buy some feverfew caplets and see if that helps prevent migraines or not.

living with chronic pain

If you wish to learn more about fibromyalgia and lyme- I recommend the following websites:

http://www.ilads.org/ (i have advanced lyme disease, I'm receiving no treatment)

and

http://www.fmaware.org/

This is the website for an excellent magazine entitled:" Fibromyalgia Aware"

Many people with Fibromyalgia have asked me, "can you win a disability case with Fibromyalgia?" The answer is a resounding yes. The real-ness of this devastating disease is becoming gradually more recognized with every passing year.