New Plan of Attack, Philly Style (Jefferson Headache Center) – MONSTER MIGRAINE

This past Wednesday I visited the Jefferson Headache Center at Thomas Jefferson University in Philadelphia, PA. My neurologist and headache specialist, Dr. H., had originally begun trying to get me an appointment there in January, and I was able to secure an appointment in March for July 17th (to give you an idea of the wait time.)

They mailed me a thick packet of paperwork that asked all kinds of questions about my diet, medical history, headache history, medication history, sexual and obstetric history, and sleep patterns to fill out and bring with me to the appointment. I also had to take my medical records and any test results- CT scans, MRIs, my lumbar puncture, etc.

The appointment is broken into four distinct parts so I will talk about each in succession prior to describing my diagnosis and treatment plan. I paid approximately $410 for the psychological and assessment portions of the appointment, some of which I may submit to my insurance company. My insurance company covered the medical portion, however I may have to pay a specialist copay.

The MMPI

Upon arrival and check in I was given a variety of assessment forms to fill out regarding pain, depression, and anxiety levels along with the MMPI-2 short form, which is a personality test used across the country. The MMPI is most commonly known to police force candidates, and is a 300-600 true-false questionaire that allows an MMPI-trained Psychiatrist to determine things like how much of a hypochondriac or psychopath you are. I actually completed the MMPI throughout the course of my 4 hour appointment, working on it when there was down time from meeting with people.

I was given a receipt that I may submit to my insurance company.

The Nurse Practitioner

Before meeting with anyone who determines a treatment plan or diagnosis I met with a Nurse Practitioner who took my medical history and discussed the information I provided on all of the paperwork I mentioned above.  She did helpful things like saying, “We’re probably going to have to admit you,” etc.

There’s nothing worse than being in a strange city, five hours from home, and suddenly finding out you might be put in the hospital.

Other than that she did the normal height, weight, blood pressure fun things. I have really bad white coat syndrome on top of all of my dislike of new places and situations… but my BP was within normal range. Dear Inderal, thank you.

The Psychiatrist

There was a great deal of time in between meeting with people and I was shepherded to and from the waiting room several times. Eventually the Psychiatrist called for me. I think that was my favourite part because his office was dimly lit.

The Psychiatrist had a few apparent goals. First, he needed to establish if my symptoms were at all related to depression and anxiety, or to my menstrual cycle. Second, he needed to gather statistical data about my symptoms during pregnancy and breastfeeding. And third, he needed to establish if I was using an exaggerated pain scale or abusing my pain medication.

He determined that my condition is not caused by stress or depression and not linked to my menstrual cycle. He also established that my use of pain medication is well within the “safe” zone (used under ten times per month so there is no built up resistance to pain medication or chance of rebound symptoms prolonging my condition.) He also determined that I am using the pain scale appropriately and that my pain is disabling.

He said that it was good that I’m seeing a Psychologist to help cope with what I’m going through, and we also talked about the recent loss of my mother.

The Neurologist

The neurologist that I saw, Dr. M. had actually lived in my city for a time and so he asked me about streets and areas he remembered. He didn’t make a lot of eye contact once he learned that I was autistic, and I suspect that he might be on the spectrum as well. He seemed preoccupied with touching base with my beloved Dr. H. to find out if she goes to “the meetings,” which I can only assume are headache conferences or something.

He did the usual neurological checks and I am still showing less response on the left side of my body reflex-wise. He didn’t seem overly concerned. He checked out my MRI disc and said that my brain was nice and symmetrical, and that I don’t show much scarring from my childhood seizure disorder.

As with my appointments with Dr. H., we spent most of the appointment talking at his computer while he made decisions about medications and treatments and such.

If you have any specific questions about my experience, please comment or feel free to e-mail me at brainhatesme@gmail.com.

The Diagnosis and Treatment Plan

Diagnosis:

Transformed (chronic) migraine… which is essentially intractable or status migrainosus. It’s all the same lingo for “long ass headache that hurts a lot and makes you feel super shitty all the time.”

OR

Hemicrania continua (HC)… which is “much less likely” according to Dr. M. but I am really hoping is the thing I have. HC is essentially a painful one-sided headache that can have migraine-like symptoms along with eye redness, blurred vision, etc. It just lasts forever. There is no cure.

The REASON that I hope it is HC as opposed to the more likely diagnosis is because there is one specific treatment for HC, and if the treatment works, it’s supposed to be like “a religious experience” (Dr. M.) and although I will have to take the toxic medication for the rest of my life, I won’t ever go through this again.

Fingers are crossed for HC.

Medications:

Indocin (Indomethacin) – The treatment for HC which I will be taking at a dosage that increases every three days until I have the “religious experience” or hit 200 mg a day, whichever is first.

Compazine (Prochlorperazine) – An anti-nausea medication which is supposed to also help with the pain and is more effective (so they say) than Zofran and Phenergan

Midrin – Which I already take for pain and am to continue to limit to less than 2 days a week to prevent rebound symptoms

DHE (Migranal) nasal spray –  as a rescue medication. I can take up to two kits per day for three days. This also comes in an injection I can do at home which is stronger, but if I don’t need the stronger stuff why use the stronger stuff. I have yet to pick this up from the pharmacy because it’s $150.00 with my insurance.

Topamax (50 mg daily), Inderal (80 mg daily) and Clonazepam (1 mg daily) – all medications I am currently taking.

Long-Term Treatment Plan

Admission to Methodist Hospital in Philly for 5 days to receive DHE, lidocaine and other fun things like trans-orbital and occipital nerve blocks and then see what the hell happens. 

That is, if I don’t have Hemicrania continua.

Come on HC!!!!!

New Plan of Attack – MONSTER MIGRAINE

Here were my talking points for my visit with my headache specialist, Dr. H.:

– Infusions are only giving me temporary and minimal relief and I want to stop, at least DHE

– I’m seeing a Psychologist to be screened for Asperger’s or ASD, and whatever else Dr. B thinks is appropriate

– In my reading I have learned that people on the Autism spectrum are highly sensitive to certain kinds of medication, especially at normal to high doses and that Temple Grandin recommends 1/3 the normal dose when it comes to any classified anti-depressent

– I have a theory that, being on all the preventatives I am at the high dosages I am, my body and brain might be overwhelmed and screaming

– I haven’t been sleeping well since my Topamax dosage was increased to 200 mg daily last Fall, and it seems to be getting worse

– Dr. Suckass wants to increase my Propanolol from 80 mg to 120 mg, does she condone it

 

Here was the treatment plan that Dr. H. had ready for me when she walked into the exam room, prior to having heard any of my talking points:

– The DHE treatment’s relative contraindications and low rate of success indicate to her that it should be downgraded to an emergency course of treatment

– She does not feel comfortable adding or increasing any medication given that I have shown no improvement and in fact am in worse condition today than I was on my first appointment date, therefore, beginning immediately, she is weaning me off of all of my preventative medication one by one on the following schedule:

Topamax

Current Dosage 200 mg in 100 mg tablets

1st Week – Decrease evening dosage by 50 mg

2nd Week – 50 mg AM, 50 mg PM

3rd Week – 50 mg AM only

4th Week – Cease medication

Nortriptyline

5th Week – Decrease dosage by 25 mg

6th Week – 50 mg PM

7th Week – 25 mg PM

8th Week – Cease medication

 

– During that time she is concerned that I may have high incidence of  “crisis” and may need to go to the ER for the pain and other symptoms, so she provided me with copies of the DHE IV push protocol and Status Migrainosis ICD-9 code to take with me and asked me to go to a specific hospital in the area and have them page her

– No Mo Botox… she refuses to put me through it again

And now you know why I think she’s psychic.

The only thing that she added as a result of our consultation was Clonazepam (1 mg) to help me sleep. It isn’t supposed to have any headache-causing side effects, and may have the added benefit of aiding with some of my anxiety issues. Lorazepam makes me feel sick, but Clonazepam’s chemical makeup has a much longer release length so I won’t get hit with it all at once, and it should help me sleep through the night. She’s going to keep me on it for three months, and then we shall just see what is what.

I am exhausted and my head hurts down into my arms, if that makes sense, but I feel positive. Even if this isn’t the right strategy, it’s at least a new strategy. The old one wasn’t working. I really like that my doctor and I are on the same page.

Infusions, Botox, Aspergers, Self-Discovery, and the Art of Doing Good

Infusions

My last round of DHE infusions did not go very well. In fact, they made me so sick, or I was just so sick from my Monster Migraine in general, that I missed the last infusion day because I was unable to drive. The DHE infusions have, occasionally, given me a small downgrade in the level of pain I experience, but only for a few hours. Overall the infusions cost about $150 a day after the $350 I pay for my medical insurance every month, aren’t very effective, and my husband and I have agreed to stop them.

This doesn’t mean I won’t get other kinds of infusions. I’m still positive about higher doses of steroids. I think there is room to explore there, and I’m going to talk to the lovely Dr. H. about it at our next appointment. I don’t feel that anti-seizure medication is effective, nor is magnesium (it actually makes my pain worse), but there are still other options to try.

Botox

Before my last injection series my doctor asked if I really wanted to put myself through the extra Botox pain and nausea again. I wanted to try at least another set of Botox injections because my doctor, whom I trust and respect, said that sometimes the first batch doesn’t really “take” and people have better results the second time around.

I am now well into my second time around and, if anything, am worse off than I was before.

Therefore I do not think I will go the Botox route again. I’m officially ruling it, DHE, and magnesium out. The Botox also affects my appearance and, at present, my self esteem is low enough due to my inability to work, perform simple household chores, bathe like my OCD self likes to bathe, wear makeup like I like to. I feel unnatractive and useless, and the Botox feeds into that by amping up my pain and hurting my self-image.

I gave it a fair try.

Aspergers

I finished reading Aspergirls and I have all of this information in my head about Aspergers and about myself and about how Aspergers and I fit together so perfectly. I really want to put an accurate picture together but I’ve had a difficult time explaining my own deficits to my family. Aspergirl does a great job, however, so my project for the day is to go back through the book and underline those sections that scream out at me. Then I will figure out how to make my Kindle put that information into something that I can share on this blog.

One of the HUGE DISCOVERIES I’ve made is about health problems I’ve had all my life and how they relate to Aspergers. People with Aspergers often suffer from painful digestive disorders, nausea, migraines, seizures as children, and hyper-sensitive skin. All of these things apply to me and have been a major negative factor in my life. Knowing that they may not be disparate issues, but in fact all fall under the umbrella of an Aspergers diagnosis is epic.

Self-Discovery

Of course I am also excited about the potential band-aids and coping skills I might find on this Aspergers path that will help me be a better wife, mother, friend, and employee. I’ve spent my life figuring out how people want me to behave and then presenting them with what they want. The problem is that, especially in my marriage, I can’t keep up the charade 24-7 and eventually I break down under the stress of a world with which I feel I am constantly at war. Aspergirl talks about two types of Aspergian meltdowns: depression-based and temper-based.

I am amazed that 1. someone actually admits the horrible behaviour that they exhibit in the privacy of their own home, or the bathroom at work, or in their car and 2. other people actually behave like I do. I’ve had several meltdowns at work, all due to some injustice that I felt was being done, and I was called out for insubordination. I’m a stringent rule-follower. I love rules. Rules and steps and guidelines and processes make it easy for me to know how to behave, what to expect, and what to say or do next. It’s the end of the world if someone tells me I’ve broken a rule.

Just ask my husband about my three traffic tickets. I still feel guilty about not knowing that I should move over a lane if a police officer is on the side of the road and has their lights flashing. I don’t remember that being in the book. I would have done it if I had known. I apologized to the officer profusely. I didn’t mean to put him in danger.  I accepted that I might go to jail. I got off with driving school and “improper driving.” I just made myself tense thinking about it. HA!

What I’m trying to say is that I have horrible, ugly, kicking and screaming temper-tantrums sometimes… no, frequently, over what my family and my employer and my friends (of which I have very few because I’ve alienated most of them with my suckass behaviour) consider to be unimportant issues. And now I possibly know why I do and that it’s something that I can’t help doing, but that can be avoided with education and recognition consideration.

In 22 Things a Woman With Asperger’s Syndrome Wants Her Partner to Know,  the Rudy Simone mentions the hyper-critical nature/flaw of women with Aspergers and that it is due to our need to control our surroundings and our visualized “ideal” of our surroundings. When our partner does something that we consider to be “wrong”, whether it is wrong or not, but just happens to be contrary to our image of what is “correct” and “ideal”, we are quick to correct our partner. And because people with Aspergers often lack tact, not only do we criticize our partners for stupid shit, we do it in a curt, and almost hurtful way. We have no cruel subtext in our statement. We are trying to help the person reach “our ideal”, but the other person, in this case, a neurotypical partner, inserts the connotation of maliciousness or cruelty into the interaction.

So no news is good news with people with Aspergers, especially women with such.

It makes me furious to find a spatula or can opener in the wrong drawer. I cook most of the meals when I am feeling well enough to. Therefore, there is a logical arrangement for cooking implements, and then there are the ways my husband and son arrange the kitchen when they put freshly washed dishes away. When I open a drawer, I quickly comment on something being in the wrong place, and I will often take an armful of implements and put them where I like for them to be before I can continue with what I’m doing. This hurts my husband’s feelings and makes him feel like I don’t think he’s capable of doing anything right.

My husband has told me on many many occasions that the way I treat him would look like abuse to an outside observer.

This distresses me to no end. I love my husband and I don’t want to hurt him. And I do hurt him, all the time, with my tantrums and the words I don’t mean and my silences and my sobbing. How hard it has to be to love me. He’s told me as much. He’s said on occasion that I don’t make it easy for others to love me.

Rudy Simone has come up with a way to help her remember not to criticize her partner constantly. She has a list on the refrigerator that reminds her not to criticize her husband’s cooking, cleaning, etc.

I like lists. I like rules. I forget to follow rules that aren’t in my face or so ingrained that they are second nature. I also forget to do things that don’t seem logical for me to do.

How simple is that list?

But I’m embarrassed to put a list like that up. I’m embarrassed to admit that even though I know that the little things I say as I’m trying to right the world around me to make myself feel better hurt the people I love because they have told me it hurts, I don’t realize that I’m doing it when I do it. It just happens. I’ve tried to shut my mouth and guard against saying critical things, but it still happens. I really believe I am just helping them do things better, more logically, more accurately. In no way at any time does the thought “you’re doing it WRONG” cross my mind. It’s more like, “that is not the best way, there is a better way and I am now going to tell you whether you want to know or not, regardless of whether my way is actually better or not, I am an improve-bot and I will perfect perfect perfect!”

One would think my home would be spotless.

Nope.

I should mention that I use “we” simply because it is easier for demonstrative purposes, but that I am not formally diagnosed with Aspergers. I merely draw lines between the symptoms of the condition and my own list of traits.

The Art of Doing Good

My short-comings aside, I have always tried so so hard to be the best at everything I do. People who are close to me are going to cough and say, “Bullshit!” because I have failed left and right at life. For years I have quipped that my tombstone should read, “She meant well.”

And I do.

But doing well and meaning well are worlds apart, and I’ve never been able to traverse that continent. Sure, I’ve done charity, and sure, there are people who will tell you that I change their lives. There are people who will say that if it wasn’t for me, XYZ would have never been possible, and they thank me to this day. Hell, I’ve been a turning point for some people. I leave a mark.

But sometimes the mark I leave on people is a scar instead of a lucky golden lip-print.

I feel, and this may be inappropriate to say, but I feel like this whole Aspergers thing is like admitting I have a problem, and now I have to go through a big fat 12-stepper to take all the bad ruin in my wake and try to rebuild it in the light of, “Oh by the way, I’m sorry that these things ended our relationship, friendship, etc… turns out I’m on the Autism spectrum and I couldn’t help it because I didn’t know. Had I known, and had I had some support and some coping skills, I think we might not have parted ways the way we did. I just want to say that I’m sorry that I didn’t find out sooner, and I hope that this knowledge can bring you the kind of peace that it is now bringing me.”

If I am diagnosed with Aspergers, and if I feel compelled to have that conversation (which I really hope I won’t because I don’t like confrontation or talking about feeling with people), I will have to have it a thousand times over.

Maybe a form letter would suffice? An e-card?