Wednesday, July 30, 2014

Hypnotized for pain

Assuming you can be hypnotized which some of us can't. Just saying.

Second tript to the pain clinic

My second visit to the pain clinic has relieved some of my concerns. I mean I completely failed to achieve the set out goal of exercising one hour a day, right? So I assumed it was going to be some sort of push to achieve that.

It was not. I wonder if he had said that from the onset to see in fact what I could achieve without implying I could not in fact do it. Like suggesting I would not be able to achieve that goal anywhere near that right away would put me in that mindset and I would then achieve less? Perhaps so.

Fact remains I only was able to do ten minutes a day on the stationary bike trying my damndest. And I was not able to, in that month, get any more than that. So not advancement on top of that.

Epic fail I thought. Nowhere near the goal. I suck.

Also what the hell was up with that goal when I have fibromyalgia anyway? Seemed insanely impossible. Not productive to me at all.

You go through all this trouble to explain things and they say nothing left for you but to exercise. No treatment left I have not tried. And I am game for it. But set a goal like that? What a bastard, right?

Well the second meeting he tells me it was quite expected that all I got for all my effort was ten minutes. In fact that was rather good. A couple minutes would be fine. Ten was good. And that he would expect that it was going to take 5 to 6 MONTHS before I can work up to the hour he would like to see.

Thanks for telling me that. Now. Actually this is very good news. My body vastly appreciates this timeline. This is achievable. Or so I hope. I seem to lack some insane muscle endurance, which from what I have read is normal for the conditions I have. He said stamina will come with time and I hope he is right about that. I know I was able to slowly increase my walking and yoga times so I hope it is the same with aerobics like the bike, although it seems to take a hell of a lot more out of me.

He also wants me to decrease my Lyrica medication. He said while it is a good medication for fibromyalgia pain wise it can be a bad one for fatigue wise. So it inhibits activity. And I definitely know that. It is why I spread it through the day... it is so bad for that I cannot take it in one dose. I am fine for decreasing it because I have been on it for many years now and initially I had noticed some improvements but I do not see as much any more so it is hard to say it is doing anything now. I know the pain killer I am on is dramatically helping me exercise even though it is not that strong. But the lyrica not so much help at all. Plus the side effects long term should not be ignored. So I am fine for seeing what sort of changes happen if I decrease it. He said if it does affect my ability to exercise then to keep taking it, but if I notice no real difference in that regard then to go down by 75 mgs by the time I see him next.

I see the physio team he recommended on Friday and that will also help with the exercise. I am hoping they will recommend things to help with the hypermobility syndrome since part of the muscle fatigue comes from that and also some exercises are not recommended for that syndrome. I do not always choose the right ones unfortunately and it causes pain and accidents. Part of the problem with the stationary bike is that it is quite painful on the knees, which are double jointed, but I cannot think on any aerobics that would be easier on my joints to be honest. Except maybe water aerobics. I might have to consider adding that in instead to protect my joints.

Monday, July 28, 2014

Pain/Full - What a shrink thinks blog

"Pain can sever relatedness, but it can also blast open a portal to connection. It reminds us of our own vulnerability, our mortality, and our powerlessness as an inherent aspect of our humanity. Pain can teach us how to be tender to others, and can lay a foundation for empathy, and intimacy to flourish."

This is a great piece from a psychologist who gets chronic migraines. Worth the read. What a shrink thinks.

"I grew up in a haunted house with a parent disabled, possessed and ultimately devoured alive by chronic physical pain. One day, Pain, an occasional intrusive visitor, burst its way in, and never ever left. Pain sat with us at the dinner table, rode with us in the car, spent sleepless night in front of the television reclining in barca-lounger, or in a home hospital bed manipulated by magic buttons. Pain spent up all of our financial resources, taught us to walk on eggshells, pressured us to forgive all outbursts and unreason, and garnered the tongue-clicking pity of the neighbors. Eventually, Pain blocked all obvious pathways to warmth, comfort and connection, as cold and dark as a cloud blocking the sun. It took up more and more and more space each passing year – until there was no room for anyone to live with it at all, until there was barely room to move or breathe.
All of us were so used to Pain and the daily incantation of its horror-litany that we grew to hate its oppressive presence. We hardened our hearts, and had no empathy or patience left for it. We were sick of its specter, and sick of its name. We surrendered to its power as it disabled us all. Pain sucked everyone dry, and left nothing behind

Pain runs in families.
I had my first migraine at age 7. By adolescence it was typical for me to become blind-sick, with an invisible hot metal spike in my eye and throbbing skull, nauseated or vomiting before and after any high-stakes event: A big test, an audition for the school play, a nervous first date, or at the mall choosing matching his and her outfits for the high school dance.
Through young adulthood I was sick more often than not: 18-20 violent, nauseating migraines a month.
In Pain’s clutches there is no room for anything else, no comfort, no connection, no conversation. It hurts to talk, to open my eyes, to listen, to breathe. Clothes hurt, light hurts, sounds hurt, smells hurt, the throbbing of my heart beat hurts. There is nothing but Pain."

Saturday, July 26, 2014

A poem: The Bright

The Bright

Will you talk to me about what goes on in the light?
Beyond my shimmering, shaking sight?

I will tell you of the moonbeams
Of colorful, iridescent silent streams
If you will just tell me what goes on in the bright
So far out of my sight.

I will tell you how I captured thunder in my skull
How lightning is contained within me without lull
If you will tell me the secrets outside my window
So far beyond my sorrow.

 A migraine poem I wrote for a page I admin (Migraineur Misfits). We often share articles and information about migraines. Anything to spread awareness. I only write poetry when I feel really inspired to really. And I was struck with inspiration last night about isolation, pain, auras and this idea of yearning for a communication of what is going on beyond the darkness of where I am confined in times of migraine.

This is the image I pieced together for it:

Friday, July 25, 2014

Women with #migraines experience more headaches during the #menopausal transition

I am not sure why they needed a study on this when it was already established but then again neuros love their studies... and often do not believe a damn thing without them. So a good thing then.

So here we go with the obvious:

“Our study is the first to actually show that migraines tend to worsen during the peri-menopause and early menopause years,” said Vincent T. Martin, MD,  co-director of the University of Cincinnati Headache and Facial Pain Program.

Generally, women hit the peri-menopause years in their 40s, when their menstrual periods become irregular or more frequent. When periods stop for 12 consecutive months, they’ve hit menopause.

“In fact, we found that headaches worsen by about 50 to 60 percent during those time periods,” Martin said.  WCPO

If you suffer from frequent migraines during peri-menopause, new treatments could be on the horizon.
Dr. Martin pinponts a few ideas to blunt the pain caused by those falling estrogen levels:
  • Oral contraceptives taken continuously
  • Wear an estrogen patch around the menstrual period for about 7-10 days
  • Consider hormone replacement therapy, with an estrogen or progesterone-like medication

You can read more about the study itself in Science Daily.
"Given that migraines tend to worsen during menstruation, it may seem paradoxical that when periods become irregular during the peri-menopause or absent during menopause that headache become more frequent," said Richard B. Lipton, M.D., professor of Neurology and director of the Montefiore Headache Center at the Albert Einstein College of Medicine. "We believe that both declining estrogen levels that occur at the time of menstruation as well as low estrogen levels that are encountered during the menopause are triggers of migraine in some women," he said.
"These results validate the belief by many women that their headaches worsen during the transition into menopause," Dr. Martin said. "We hope that our work spurs researchers to develop novel treatments for migraine during this time period given that many of the headaches encountered are thought to be hormonally triggered." ScienceDaily

It is important they establish these sorts of things with studies. Set it down so that a neuro can read that and understand when a patient comes into his office who is 45 or older with worsening migraines the cause of them. Because that is a significant increase in pain. Also we want to have established ways to help women with this increase in migraines related to the hormonal cycle.

Personally this freaks me out. I am trying to improve my migraines so that I can return to work in some fashion. And then, what? Bam peri-menopause will happen somewhere in about five or eight years and I will be back where I started from... or worse. And there can definitely be worse with hormonal migraines, since they are in fact my worst migraines as is and went completely nuts when I was working. So that is disturbing to think about for sure. That is a long stretch of time there.

Friendship and socializing

Today at the shrinks office he asked me if I have any close friends I talk to or hang out with. The answer being no. He asked me if I still talk to some of the people I worked with. The answer being no, but not because I don't want to but because I just have not been up to it.

I have in my life had some pretty awesome friends. I am however, very introverted. I do not mind me, myself and I.

This makes it really easy to become a hermit. For a couple of easy reasons. People move short or long distances away and I have a hard time keeping in contact with them when that happens. I have a hard time commuting Anywhere for Any reason. Other times people have life changes that make them busier such as having children and they have less time to do things and so when they do, I would have to be available, but I am not always available. I am often health compromised. So often I drift apart from people who are busy and neither of us notice it too much.

And then there is the simple fact that pain just gets in the way of the desire to do things. Until you do not do much. Because when you are working that is your main priority in life and there is never any energy or pain tolerance left after that. Weekends are for recuperation. So you become a hermit without meaning to. Often people drift away. You do not get invited places any more. Maybe a few work friends invite you out once in a while but that is about all the socialization you get... or can even handle.

So it comes about that you are not working and you look around and, no, you do not have peeps around you to do things with. Yes, it would be mentally healthy to do things. Things are good. Socializing is good. But all the peeps are gone.

In a way that does suck. But I am an introvert so in a way I also do not mind my own mental space and self. I would like to socialize more. And I have made it a priority to get out more. Meet more peeps. Get out and about in small doses. It is a good thing. But you cannot just do it... because of course no people around are there. All gone with the wind ages ago. So it is a slow process.

He also mentioned going out and choosing to do activities where I could then socialize with people. Like a writers group... there is not one here. An art class, not sure about that, but doubtful there is one. Tai chi maybe... there is a short class of that during a weird part of the year. Anyway, this is to compensate for the lack of working, to fill space, to fill the lack of socializing you would do at work, the space in routine... that sort of deal. A good idea. I like it. If I can find something that is cheap and interesting to do around here.

Friday, July 18, 2014

JD Schramm: Break the silence for suicide attempt survivors


That is a statistic we do not hear often. 19 of of 20 people survive the first suicide attempt. 37% who fail that first attempt will succeed a second time. A very high risk group.

Without question people are uncomfortable with suicide. So surviving it you will find a lot of people do not want to have a serious conversation with you about it. And it can lead to a sense of isolation and shame.

People with a chronic illness and/or chronic pain are at a higher risk for suicide or suicidal ideation. Just physical pain from chronic pain alone is a risk factor to suicide that is very much ignored.

No one thinks about the resources a person need after surviving a suicide attempt as we flounder to survive. We have to choose to survive first. I mean there was a reason we tried to commit suicide in the first place. So we have to find some reason to choose not to. Even if that reason is not ourselves at first. And the suicide attempt is a traumatic experience that we have to deal with and plagues us for a long time after. And seduces us for a long time after. For the most part this battle to overcome it all is done in silence. I know in my case my doctor thought it was almost expected... he said it was a strong reaction to pain. Yeah. That. And while that was very true it was also a lot more. And while I saw a therapist for a short duration she did not help at all. I was in a lot of physical pain which caused a lot of suffering. And I needed some help with that. Because it did not make a lot of reasonable sense to want to survive like that and to Also torment myself further by aggravating the pain with full time work, which I was doing at the time. She had said I simply should not work. Yes, well, that does not work well for the whole needing money thing and I cannot put myself on leave I need others to do that. As I said, she was of no real value for me. Not even in helping with methods to manage the pain.

So if someone does survive a suicide attempt and you know the reason for it, it seems logical to me that something should be done about that. A lot of something. Not saying in my case some things have not changed and the direction of my treatment has not improved slightly but that had nothing to do with that incident and a lot to do with my finding a new doctor.

I think there should be mandatory resources for that person. Instead there is just a lot of indifference which astonishes me to be honest. I think of all the lives lost to chronic pain due to suicide and perhaps those numbers make sense. Indifference to pain treatment, indifference to suicide attempts. Just indifference.

Not with family and friends of course. Loved ones are anything but indifferent. In my case it was seeing the impact of that event that has caused me not to have another attempt. Not everyone was comfortable talking about it but some were. And I was able to think a great deal about it and work it out as to what needed to be done to change the situation. But family has a difficult time coping as well and not everyone will know what to say. Or say anything. It can be a very difficult topic to discuss. Especially when you do not know all the details and the person themselves has no willingness to open up, but if they do all you can sometimes do is listen and be there for them.

Wednesday, July 16, 2014

peri-menopause and menopause and #migraines

I am not old enough for menopause but I do get hormonal related migraines so it is interesting to know what I will be in for. Pre-menopause and menopause can be extremely hard years of migraineurs. Depending on the woman the perimenopausal years can start in the 40's and menopause in the 50's. The increase "migraine frequency may occur because of an increase in trigeminal nerve sensitivity to falling estrogen levels." Seven portions

Research done in 2011, and I have had this confirmed by personal stories as well, suggests that hysterectomies do not help bypass this either. Going through it naturally seems to have a better likelihood of reducing the migraines after it is all said and done. But... "Both results are conditional though, depending greatly on whether or not a woman’s migraines earlier in life were closely related to her menstruation. If a woman experienced menstrual migraine or menstrually-related migraine as her most severe migraine each month, then the results of this study might apply. However, if her worst migraines occurred as a result of non-hormonal factors, the transition into menopause may have no effect." Seven portions

And you have to love this:

According to a June 2009 article published in Post Reproductive Health, the recommended treatment for management of menstrual migraines in perimenopause is HRT. Yet according to Dr. Ralph Evans in Handbook of Headache, the use of HRT has a 45% of reducing the number of attacks and almost an equal chance (46%) of making them worse. Seven portions
However, this is not unexpected. The treatment for menstrual migraines that is hormonal treatments can make it better... or make it worse. But this? Basically 50-50 shot there.

Alternatives are:

Taking NSAIDs for three days prior to the start of menses and continuing through the cycle can sometimes prevent menstrual migraines. Others have success with using long-lasting triptans daily for the same duration. Magnesium supplementation may also be effective. If non-hormonal treatments fail, HRT may still be considered. The best hormone replacement results (33% improvement) appear to be from more natural forms of estrogen such as a patch while conjugated estrogens (Premarin) tend to make migraines worse.  Seven portions
Now these are similar to menstrual migraines so all sounds the same here. A little warning on the NSAIDs though. I tried this for menstrual migraines and it gave me a bleeding ulcer. Cramps, pain and then bleeding ulcer. Doctors are quite comfortable prescribing NSAIDs but they also have their side effects and it is good to remember that. Also in my case my reaction to them, which was painful from the get go and got worse, caused a permanent drug sensitivity so I cannot even touch OTC NSAIDs any more. Which as you can imagine sucks because they are rather nice for menstrual migraines and symptoms. I had been given this option because I have bad triptan side effects so cannot take them continuously, which as stated is another option. I believe Amerge had been mentioned to me as a good one.

Since menstrual migraines are the most brutal and acute migraines of them all, and very difficult to treat I cannot image peri-menopause and menopause are going to be fun in the least.

Sources to check out

  1. Women with migraine experience more headaches during the menopausal transition: results from The American Migraine Prevalence and Prevention (AMPP) Study
  2. Hysterectomy and Migraine: What can you expect?
  3. Migraine outcome in postmenopausal women: are there predictive factors? 
  4. Hormonal management of migraine at menopause
  5. Medical Oophorectomy With and Without Estrogen Add-Back Therapy in the Prevention of Migraine Headache
  6. Headaches Increase During Perimenopause