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

Morning #migraine strikes of lightning

I hate it when you are just sleeping and minding your own sleeping business... then suddenly...

Migraine lightning

Obviously the stage 1 and 2 of the migraine were occurring while you were blissfully in slumberland. So no way you could treat this the instant you became aware of it. You had no awareness at the time.

No your first awareness is the sizzle and throb of pain. Blink aware and there it is. Pain. Better than any damn alarm clock in existence although you don't want to get up or move. You think maybe if you lay there longer it will help. It doesn't. Laying there hurts more. Like your pillow is made out of rocks.

What a way to set off the day. To a full blown migraine that will not abort with a triptan because it is past the point of no return. Lovely.

Sunday, July 13, 2014

Slow and steady with my exercise... not as planned

This is in fact what I believe about improvements when we have a chronic illness. If we want to exercise same goes I think. It does not matter how slowly you go as long as you do not stop.

And I had to be reminded of this today with my persistent leg pain after days of all this aerobic exercise on my stationary bike. Exercise that is only 10 minutes a day but feels like a freaking marathon to me. I think that pain clinic seriously overestimated my capacity in this regard and also I think the speed at which I could simply jump into this. I think it is a mistake on their part certainly, since the first pain clinic got it. It makes me feel rather like a loser to know that each day all I can do is this 10 minutes after pushing myself and even on my pain killer. When the pain clinic expects an hour. An hour? Not going to happen. I am not even sure half an hour is going to happen any time soon. And I am fine with that. Because I have found pacing myself makes a lot of sense in the past with these sorts of things. And even pacing myself comes with the price of accumulated pain, such as today breaking through the pain killer.

When I began my own exercise program and realized the extent of my pain and fatigue that came with it I knew that it would be a slow pace. I also knew that just the movement was important. I knew just a little bit would be beneficial. And they say a 20 minute walk is beneficial. I literally increased my pace at the time by minutes every couple of weeks. Slow and steady. Worked my way up to 20 minutes of yoga. And a 20 minute walk. Obviously I am behind that again but even so, I am considerably worse at aerobic exercise apparently.

I am reminded that when a neuro had told me that what I was doing was not sufficient, I had tried to up the pace. And injured my back. And then proceeded to not exercise at all for around six months. So a lot of good that did me. So I think we really have to listen to what our bodies are telling us about what we can do and about the pace we can do it in. And not the so called specialists who know nothing about fitness spouting off what some study said we need to do to help with one condition without taking into account our overall health.

In some sense it is always difficult when you are young with a chronic illness because part of you always believes you can do things. That you have this capacity in there somewhere. But when you try you fail. You just completely are incapable of doing it. You brain says there is nothing wrong with you so there should be no reason you can't do a reasonable amount of physical activity. But chronic illness is a complicated thing. It says otherwise and not just with pain. With immense fatigue.

It certainly does not help that when a doctor looks at you and thinks well she is young... she can do all these things. Like this recent pain clinic fellow who told me bluntly that I was young and could handle it and that he only suggests yoga for 'older people'. This perception of youth and vitality sort of screws you over. Invisible disabilities being all invisible and all even from those people that should know better.

Friday, July 11, 2014

Epic #pain day

What do you do for those Epic pain days? Those days that exceed your pain tolerance? How do you cope with that exceptional level of pain that defies all reason?

I generally call these 'lost days' because they are lost to all productive activities and all other activities as well. They are just lost to pain. We can do nothing but manage our pain as best we can and ride it out.

Yet it is not as easy as all that. The pain is intense and digs right into your very soul. It is at these times I am at the highest risk of depressive thoughts. Of even suicidal ideation. The pain just circles around the brain as it does and you lose your sense of past and future. Locked into this moment that seems stretched on to eternity. And you believe there is just no end to the pain. In general. To this pain, yes, eventually, to all pain... no, never. And that haunts you during these most intense moments. So I must find ways to distract my thoughts at all costs because this being consumed by the pain is a very bad state for me to be in. Either distraction of some sort, that I am capable of. Or sleep, if I am in fact capable of that. Those are often my only solutions.

How to distract your brain in intense moments of pain varies from person to person. What one person can do another just cannot. And other times what you can do during one episode becomes impossible during another. For example, often I like to read to distract myself. Even when I cannot handle doing on the internet or watching TV I can read. Even with poor vision in dim light, I can read. Prefer dim light to be honest. But a lot of people have problems with this. Some people prefer watching a movie for example, but often the light and sound aggravates me. So we have to pick and choose what we can when we can.

Sleep is often tricky at the best of times with pain. However when pain is very high sometimes sleep is literally the best solution. So if you can attain it I often aim for it.

I also like anything that soothes. I like menthol creams on my neck. I have a migraine balm I use on my temples, forehead, cheek and jaw. I like ice on the back of my head. It usually hurts more to lay down completely but resting upright against something works quite well for me. Some people like to take baths. I cannot due to blood pressure drops, but I would if I could. And we can do things like mindful meditation or relaxation breathing or listening to really soft mellow music. Absolutely none of this will stop the pain, it just helps with the mindset while in pain. Anything to keep distress down is what I aim for. Being calm and relaxed and in pain sort of seems like a contradiction, but I aim to be as calm as possible, and as relaxed as possible. Keep my mind off stressful thoughts. And away from its depressive negative spiral.

Some days... it all seems to work better than others. But no one likes lost days. They are lost no matter what you do to manage the pain and that is exceptionally frustrating. Yet we do have to take care of ourselves during these times of increased pain so that it does not, well, continue.

Wednesday, July 9, 2014

Hulk Smashing Loki - FM and Exercise

Literally how I feel after I exercise! lol

Migraine diary and exercise

The pain clinic has requested that I do a migraine diary to track my pain while doing the exercises they requested to see what sort of improvements there are.

There are lots of things I could say about exercising so far. Seriously is not fun. Makes migraines worse. Makes vertigo worse. I can't seem to physically get to the level the pain clinic wants due to the FM, because of muscle fatigue partly and the pain. That muscle fatigue starts fast and just gets worse and worse fast with aerobic exercise... I run out of oomph fast. Then run out of whatever is left over pushing through the fatigue. Then it is just pain.

Point being is that tracking migraines through a change is a good way to see if that change is doing anything to improve the situation. And so far no, no, it is not. And one thing I have always loathed about migraine diaries is that they are very depressing. It is a lot like this 8,8,8,9,9,8,9,7. And it just makes you very aware that you have no break. Ever. Also makes me aware of the days where I have all day long migraines opposed to starting in the afternoon migraines.

It really is beyond me how doing exercise which causes this much pain will 'poof' reduce my pain. It seems like such a contradiction. Although I know logically with FM it is good to exercise, to a degree within your limits. With migraines it is complicated of course. All doctors though, and I mean All of them, pay attention to that one study that claims 3 hours a week of aerobic exercise, 40 min a day, for a few months was equivalent in reducing migraine frequency as topamax. 

Results: Ninety-one patients were randomized and included in the intention-to-treat analysis. The primary efficacy variable showed a mean reduction of 0.93 (95% confidence interval (CI) 0.31–1.54) attacks in the exercise group, 0.83 (95% CI 0.22–1.45) attacks in the relaxation group, and 0.97 (95% CI 0.36–1.58) attacks in the topiramate group. No significant difference was observed between the groups (p = 0.95).
Conclusion: Exercise may be an option for the prophylactic treatment of migraine in patients who do not benefit from or do not want to take daily medication. PMC
And that was not a large study by any means. Nor was it one chronic migraines I might add. Doctors seem to ignore the other aspect that of relaxation techniques. But they do Love their topamax and recommending exercise. I must say, it might be a tad easier to exercise if someone didn't have a migraine every fricken day and maybe, just maybe, not starting with aerobic exercise might be a good idea.

Either way, it is not a simple thing. It is not a fast solution. Nor apparently an easy one to accomplish. And it makes me damn cranky to have the increase in pain I will tell you that.