Any new HA ideas?

[Shawcar]

Hi. Been awhile since I last visited here. I thought I had this thing licked - NA-SAH 7/8/12. Thought I had my energy back, my nerves of steel and no fear back, knocked the headaches and head pain. Superwoman!

 

Lots of denial. Was taking topomax but I finally realized I was in a constant fog - sleeping during my lunch break, coming home and sleeping, etc. And was having vision problems. My neurologist had me go through a fast taper and now I'm blasted with headaches and head pains - the horrible shooting ones. I am clearer thinking off of it and I now realize how heavy my body was feeling on the med.

 

But does anyone have any new information on beating the head pain? It's debilitating. Have you experienced an increase d/t rebound then a decrease in pain after tapering off topomax?

 

I have been working in a very HIGH stress job as a head nurse. I'll be starting a new position in nursing administration - which I'm hoping will help because I won't be juggling so many situations and it comes with a little raise so that will relieve some economic stress. Here's the deal - I'm NOT superwoman, I'm one of you - someone trying to get through life after a SAH and in spite of my gratitude to be alive, some of it sucks. If any of you have any suggestions (I recognize no endorsements) about ways to relieve the pain, I'd sure appreciate it. And maybe how you cope with stress - I'm thinking there is a direct correlation. Thanks guys.

[Super Mario]

It is recommended that drinking lots, and I mean lots, of water to help reduce the headaches. If you are doing such a high stress job are you really drinking enough? In that position it is so easy to neglect yourself.

 

There is the possibility that the stress is adding to the incidence and severity of the headaches. Many of us have found that we have to slow down, even to the extent of cutting hours. We are no longer able to cope with the same life we had pre SAH.

In a word, we have to rethink our lives.

 

Stress gives people who haven't had a SAH headaches, a well known fact.

[Macca]

Drink lots of water throughout the day -if your headaches persist -see your doctor!

 

When you think about it -stress can't do you much good because you are making your brain (which has already suffered) work extremely hard because you keep going over and over things.  Don't bottle it up, talk to someone -'a problem shared is a problem halved' they say

 

So de-stressing has to improve that by reducing concentration levels.  I am guessing, but it just seems logical to me.  Talk to your doctor about it and in the meantime, take your foot off the gas a little and give yourself a chance.

 

Good luck,

 

Macca

[Daffodil]

Casey and shawcar, I don't think there is a simple solution to being headache and pain free and many people have this challenge but it's about finding something that works for you and kind of sticking with that routine but rolling with it when that doesn't work that day.

I try and notice my pain, sounds odd I know but when you watch and look at it it does kind of shift and after a while you see it does change with time and move and shift and that maybe you are also tense in your jaw or someplace else which is adding to the stress , for me it is always my shoulder that I stiffen with the pain so if you can relax from that that it kinda helps.

Things that work for me to keep my head pain within my tolerance limits. Simple routines, lots of water, no alcohol at all, my choice, decaf drinks, plenty of vegetables, regulating my sleep to the same each night, lots of mini breaks in my days where I clear my mind and just empty head of thought( even with the tinnitus for company I just zone it out!). Extra sleep when I need it so that means saying no to stuff that my ego REALLY wants to do.(I find this very hard) I always get up real slow from lying or sitting and massage my own shoulders every night before I sleep with a good oil. I wear sunglasses when the pain is bad, always wear hats in the wind because that really bothers me and earplugs for very noisy situations.

My ambition is so much less than it was before and I don't measure my success by how good I am at my job any longer but how well a day went, how long I managed to stay up and still string coherent sentences together, that's not to say I don't enjoy the job I just have different expectations for myself.

Take care both be kind to yourself in the same way as you would to someone else who went through this, what would you advise them to do and then gift it to yourself.

[Winb143]

Casey and Shawcar,

 

I believe that stress is a major factor as Daffs said and my Neurosurgeon stressed to me how important to live stress free (not easy).

 

I try and think of times when I laughed so much. you know shoulders heaving etc. and I laugh, okay my hubby thinks I've lost the plot but honestly do not listen to moaners and groaners, I don't mean it bad but I have a sister who is

"Oh listen to my troubles" and I know I can only talk to her for short times.  I am not rude to her I just switch off (bad arent I).  ha

 

Both take care of yourselves and remember RELAX and do not take others worries on xx

Your turn to look after yourselves xx  Be Well Both xx

Winb143 xx Win indoors "Al I cannot take stress sob sob " joking not !! lol

[Karen]

Daff, that's a really good response and I think that you've pretty much covered it. 

 

I've pretty much become headache free most weeks .... well, I still have them and probably more frequently than others who haven't had a SAH, but it's manageable. I still have a neck left on my aneurysm, so I'm not completely fixed.

 

I do have the odd week where I suffer ... but nothing like the earlier years. You may hate me for saying this, but I think that the initial 2 years are a marker to understand what's happened to you and at about 5 years post SAH you probably learn what is and isn't good for you and what works for you.

 

If you can offload additional stress, then do it ... a little bit of stress isn't bad for you and we will all have stress in our lives to manage and we can't always change things, such is the nature of life.

 

It's tough, but trial an error to see what you're managing and when things go wrong, take a mental note of what you've been doing. Sometimes you have to develop a bit of a selfish gene .... ask for help, accept it and do what's good for you too.

 

I'm nearly 10 years on from this SAH and its a learning curve, but life does get better. xx

[iola]

Hi,

I know exactly where you are. My job is high stress and it does not help headaches. I am a yr and a half from mine and it can be a struggle.

You start to feel good again and feel like you have jumped forward and then SLAM you feel as though you have fallen back six months or more.

I seem to go in cycles. I told my husband I do not remember what it is like waking up and not thinking about how I am going to feel. I am always very aware.

You need to step back because you will break down. I think we push ourselves even more now because of what we are trying to prove to ourselves and others.

Don't become the patient. Take care of you and pace yourself. You can still do your job, just differently.

Iola

[kpaggett]

Yoga.  It helps to both clear the mind of thoughts and body of physical stress.

Meditation.  It helps to focus on the real stuff of living that isn't at all stressful.  We make our own stresses.

 

 

I meditate daily and have been building my yoga practice to as often as my body needs it.

~Kris

[Winb143]

Like you said "I"  I now do ironing sitting, we have to change to suit our moods or how our body is reacting on that day.

 

I wish I could meditate Kris but my brain is so busy.  Does that make sense?.

 

Good Luck All xx

[April]

Our bodies told us before we had the SAH that things were going to explode. I was running everywhere, being super woman, booked all the time, working out like a demon and just letting everything bother me. Explosion. I am retired! How does that work?

 

I got really scared after this happened. I laid on the couch with ice packs. dark glasses and the worst headache ever for 6 weeks. Now I have stopped. No more headaches. I listened every time I felt a twinge or tired or weird. I laid down and rested and listened to my body. No more running, no more extensive working out, no more listening to other people's stupid stuff and most of all just living moment by moment. I changed my life and now can walk and talk and look at nature and I dont need the high standards I always put on myself.

 

Yeah life!

[Teechur]

I think different things will work for different people, although I am SO ready to try April's way. I have not had a day without a headache since Jan 28 2012. (I think that was the day.) I know I say very hydrated, try to make sure to eat regularly. I take all the medications and supplements my doctor (Neurologist with a specialty in headaches) tells me to. I exercise regularly both cardio and strength (again, doctor prescribed) although I can't on bad head days. I do not go to anaerobic levels because that raises my heart rate too high and I can pass out. It also spikes my headache so bad that I'll be in bed the rest of the day so running a race is fine but racing a race is out. Boo!

 

I, personally, cannot do yoga. If I go upside down it hurts too much. However, I can do SOME yoga for stretching and the like. I am also one who can't quiet my brain, never could. I always found yoga way too stressful, however running is an activity that calms me like nothing else. I can be hopping mad (or could, BS--before SAH), go out for a run and completely forget what I am so mad about within the first two miles. I even remember times TRYING to stay mad at my husband so I could give him what-for when I got home from the run. But I'd get home and not remember what I was mad about when I left!

 

At any rate, depending on the cause of the headaches, it is really hard to tell what will help them. Some days mine are bearable. I can teach, run, go teach bootcamp, and come home and write newsletters and watch TV with the family (which consists of husband and six dogs. Other days, like yesterday, I spend the entire day in bed with said six dogs wishing death. With me, my neuro believes the pain neurons were overly excited to the point that they are still just firing off like they're on a bender and it's Friday night in Dodge city! So I just keep trying new things, but I'm almost to the point where disability is becoming a reality.

[Shawcar]

Thank you all so much for your response and for reminding me I'm not alone! I see at least 2 huge common threads in your replies - water and de-stressing. I'm negligent of both. I always start the day with good intentions regarding drinking water but never drink more than 8 - 16 oz a day. That changes now! Pre-SAH, I thrived on stress - always being the first, the best, the go getter at work. I struggle so much letting that go.

For awhile I was meditating at night. In hindsight, I was more ... at ease if not more relaxed when I was doing that. With this new position, I see an opportunity to simply (?) make taking time to a break a part of my routine. Sort of new start and this will be part of the job duties. 

 

I never have been good at taking care of me and I carry a ton of guilt that I caused my bleed - "they" surely haven't given me a reason. Guilt = neglect because I think somewhere inside me I feel like I don't deserve to slow down. 

 

So much self-work to do. I need to think of this as an opportunity and a blessing.

 

Thanks!

[Teechur]

You may  never get a reason, Shaw. I did a stress test on Monday and I ended it at 16 minutes only because I had another appointment but I really REALLY wanted to go for the record and break it (21 minutes). The doctor told me I had the cardiovascular system of a 20 year old at level 5 and I finished level 6. Why did I, at the age of 46, a marathon runner who lived an extremely happy, low stress (although very busy) lifestyle, who takes exceptional care of herself have a subarachnoid hemorrhage? Because, according to my neurosurgeon "Sometimes these things just happen and we don't know why." Why, three years later, do I still have ongoing excruciating headaches? I don't know. I do everything right. I follow ALL doctors orders. 

 

I am at peace, at this point, with not knowing. It is what it is and if we dwell too much on the why, it doesn't allow us to move forward. I know it didn't allow me to for a long time. I'm now facing that this is my life now and I'm ready to make some changes, thanks in no small part to April and some of the others on this board. We are where we are and we don't have to give up living a wonderful, amazing life because of our issues. We just have to form a different amazing and wonderful life.

[Skippy]

Well said Teechur.

 

I found that once I stopped fighting the new life I had to live and accepted it - things did become easier for me.

[julianc]

My short experience with a NASAH or Perimesencephalic SAH drives me to the conclusion that the brain doesn't like being soaked in blood despite obviously needing measured amounts of it to bring it oxygen.  What if the brain were to be washed somehow?  Clear out that contaminated blood CSF and allow the brain to deal with unpolluted CSF like the good old days?

 

My reasons for this:

 

When you have a SAH your head is generally kept at a 30 degree from horizontal.  This allows new CSF to reach the brain, and older  blood contaminated CSF to flow towards the bottom of the spine.

SAH patients have a tube to remove excess and blood contaminated cerebrospinal fluid (CSF).

At hospital and after discharge, mornings (after a night spent horizontally) were my worst time for head pain.  My own local doctor confirmed this was the reason.  4 weeks from the NASAH and I sleep at an angle and feel better for it.  I don't exactly BOUND out of bed but I get up and make breakfast and the lunch box for the eldest.

Everyone tells you to keep well hydrated.  Well, and a strange connection here, boxers put themselves at greater risk of brain injury by purposefully dehydrating themselves before a boxing match in order to reach the required maximum weight.  Where does an important amount of the removed liquid come from?  The cranium.  Without that liquid an important cushion to the blows they receive in the match is reduced and people are campaigning for more time between weigh in and the fight to allow them to rehydrate.  I bet boxers would do poorly too if that CSF was contaminated with blood that clogged up pores and reduced the brain's ability to hydrate using CSF.

One night in hospital my head started hurting so much I almost cried.  When I stood up in panic wondering what could I do, but not really caring if anything bad happened because what could be worse anyway?, I was surprised to find that the pain levelled then eased off.  Startingly quickly.

 

and lastly this....

http://www.bristol.ac.uk/news/2010/6867.html

A surgeon in Bristol has proposed precisely this treatment for babies suffering from cranial bleeding.  I haven't done more background reading than this but its a proper source.

 

Its not specific to SAH but I think that the underlying logic and principile are similar.

[Teechur]

I sleep at an angle every night due to lower back issues and I haven't found it to be a benefit at all to my headaches. Of course by now the blood in the CSF would be gone. You'd also have to know how the CSF and blood interact. Is the blood heavier than the CSF so does sleeping at an angle cause it to move downwards? That's an assumption, not a known. I'm not sure, but for me standing tends to make the pain dramatically worse. Sometimes I'll think I'm feeling much better in my prone position and then get up and "Nope..." as soon as I stand, the brain pain returns.

 

In short, I guess what I'm trying to say is your hypothesis is interesting but we all have different experiences. It might be worth a try, but just sharing that in my situation it hasn't been a benefit to sleep at an angle. I sleep  in almost a sitting up position and have for years because that, along with good exercise, has almost completely alleviated lower back pain.

[kpaggett]

One mor thing I did a few times so far is to chart my energy level for 3 days in a row.  

 

Every 1/2 hour I put a mark on a graph that indicated how I thought my energy was.  

 

 

It surprised me and I found out the first time I did it, when I really needed to take it easy each day and when I could do my best living at other times.  By the way, the 8-5 world with 8hours sleep did not correlate with my energy levels, that was one assumption that I had to drop.  By taking rests when my energy was at it's low point, it really helped to thwart all those mishaps and feelings of not measuring up because they happened.  I felt more in control of my body...by knowing my own personal cycles.

 

Just a thought.

~Kris

[Teechur]

That is an excellent idea, Kris. I used to keep a headache journal but when every day is " Yes, I have a headache and it hurts...today it's a level ouch. Today is ouchier. Today is less ouchy" and then no one looks at it, it gets old doing it. However, maybe an hourly where I just log headache and energy with a mark would be very helpful throughout the week. 

 

Great idea!