Discussions of issues related to living with cavernous angiomas


Postby ajlong17 » Mon Oct 11, 2010 11:03 pm

I had a large bleed in my occipital lobe about three months ago. It's since been about half-way reabsorbed, and my vision has improved considerably. I first noticed symptoms when I was running, and they think that I may have experienced a spike of blood pressure as I was running that caused the bleed - of course, this is all pure speculation.

I've always been a very active person. Before the bleed, for the past 15 years, I ran about 10 miles a day, biked a few times a week, went on 15 mile hikes on the weekends - as you can imagine, I've been going stir crazy the past few months unable to do anything but walk my dog (and even that was only recently). I'm pretty fearful of causing another bleed, but the running and cycling and hiking is such a part of me that I really don't feel like myself without them. My neurologist said a few weeks ago that I could lightly jog a mile or so, but monitor my blood pressure afterward. I'm scared to even do that, though.

Has anyone out there experienced a bleed and been able to run or cycle or anything like that afterward? Were you given any guidelines about how much to do, or what blood pressure to look out for, or anything like that? And how long did you wait after the bleed?

I am planning to go to a yoga class this week - so I am getting back into one activity - but honestly, I feel like that may be the only safe activity. I know I'm probably being over-cautious - afterall, I did all that stuff for 15 years without a noticeable bleed - but doesn't the fact that I've already had a bleed put me at greater risk for another?

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Re: Exercise?

Postby calabresella » Tue Oct 12, 2010 5:25 am

I would love to know as well! I had horrible headaches after going on a hike through sand dunes with very little water (1 cup for 8 miles, 7 hours through woods and sand dunes). I would have brought more water, of course! But my friends insisted it was not necessary. My husband and I shared one 16oz bottle of water...Of course, I know now to never hike with them ever again, let alone take hydration advice from them.

Anywho, I started having daily headaches after this hike (one horrific headache during the actual hike). Of course, I popped the Excedrin Migraine like candy and all I imagine is that it made me bleed more than I 'should' have.

Basically, I would just love to hear from anyone else who has this condition, exercises, and their experiences!
Large bleed in medulla, 2010.
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Re: Exercise?

Postby kirkmc » Tue Oct 12, 2010 8:26 am

First, yoga. Don't do any poses where your head is lower than the rest of your body. Don't do the salutation to the sun, because you have to bend over and lower your head. In many cases, this won't bother you, but it's a risk, especially after a bleed. (After my big bleed, I had a small relapse after being in a dentist's chair with my head very low for an hour.)

Regarding blood pressure, there's no real link with CAs. Some months ago, we asked our researcher to look into this, and she found that no knowledgable doctors saw any certain link between high blood pressure and bleeds. The reason is that CAs are capillary, and by the time blood gets to them, the blood pressure has been attenuated. Naturally, high BP is a risk factor for other problems, but in general, doctors who know CAs don't see it as a problem.

Many members do exercises of all types; there are even some who run marathons. The safest thing is to get back into it very slowly, and listen to your body. Don't try to push just for the sake of doing more; make gradual increases in time and intensity.

As for hiking, water is, well, kind of essential. Whether that could affect a bleed or CA is unknown, but if you are already neurologically sensitive after a bleed, a lack of water could certainly exacerbate any symptoms.
Two brainstem CAs in the pons. Big Bleed in July 2005, previous, undiagnosed bleeds in 1982 and 1987, and several smaller bleeds in the past few years. I live in a town in the French Alps. http://www.mcelhearn.com
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Re: Exercise?

Postby Kelley » Tue Oct 12, 2010 1:31 pm

It's a bit off-topic but...My son has been given very little restrictions for exercise/physical activity other than wear that helmet and his hydration levels are something he needs to be really aware of. While not everyone has seizures, it's a huge issue for my son-watching his electrolytes. He gets even a little low, he seizes. So we're constantly pushing the right fluids.
Trying to make a difference for my son, one post at a time:http://angiomassuck.blogspot.com
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Re: Exercise?

Postby HeidiR-C » Tue Oct 12, 2010 2:28 pm

I can only speak from experience, and so I act from experience as well... :?:

I used to run... and I always ended up with a headache for the rest of the day. That was before my first obvious symptom of dizziness, double vision, numbness, etc.

Also, when ever I drink beer or wine.. I get a headache... That is lately... it was hit or miss before.

I was walking 3 miles every other day for a while... and that was ok, but I brought water.

Now, let me add, that other than that I shouldn't take aspirin products, and not to ride roller coaster (that always gave me a headache also) I have never been given any restrictions.

I stopped running, I don't go out in the direct sunshine, (and that is tough in Florida), I don't drink beer or wine, well I try not to. :( (If I do, I only have one) I try to get at least 8 hours of sleep, and rest frequently, if not, I am dealing with major dizziness and double vision and numbness.

I have been to a Neurosurgeon about once every year or every two years. I can't find a Neurologist that will see me, with out writing me off and sending me to a Neurosurgeon, who will not do surgery, and by the way... I really don't want surgery. :?

My point, until this condition gets more visibility, until I can find a doctor who is interested in following me, instead of taking a wait and see approach... I am going to have to take the knowledge I find on pages like this, and treat myself. I do take Imitrex when I get a headache, and those headaches last usually two days, the first day starts out really bad, and the second is usually not that bad. I was told by a Neurosurgeon from the University of Tampa that I could take Imitrex.

For that reason I am grateful to the others on this forum and those that follow my blog: http://heidispot.blogspot.com/

I have asked my doctor about disability, and he seems hesitant. But then again this is the same doctor that didn't tell me to stay away from Aspirin products, but did tell me to not ride roller coasters and to keep my blood pressure low... so go figure...

This is why I listen to my body...
Diagnosed in 1995, 3 angiomas, active one on my brain stem. Now 15mm.
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Re: Exercise?

Postby ajlong17 » Tue Oct 12, 2010 3:02 pm

Thanks for the tip on yoga. I will definitely keep that in mind as I practice.

I'm beginning to learn that there really isn't an answer to this one, that it's different for each person. When I got out of the hospital in early July after my first bleed, the neurointerventionalist told me I had no restrictions and could go back to running immediately if I wanted to. Well, I waited a few days, and instead of running I got onto an elliptical machine at a very light intensity. As soon as I finished, my vision started to get worse, and I had another visual seizure. Two hours later I had completely lost all vision on my left side. I ended up back in the hospital, this time for far longer, and my vision still is not what it was when I got out of the hospital the first time (and I doubt it ever will be). So when I hear no restrictions now, I don't believe it, because that's what they told me before and when I relied upon that I ended up far worse.

So I guess the answer really is to take everything very slowly and listen to my body. While I know this is true, for some reason I feel like that answer isn't really an answer at all.
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Re: Exercise?

Postby PattiG » Tue Oct 12, 2010 3:48 pm

I am 6 mos. post-op right thalamic surgery and I do indoor walking (Leslie Sansone DVD's) 1 - 3 miles daily w/my ns 'approval.'
I think gentle exercise and in moderation is best, and always 'listening' to your body.
The first exercises I did post-op were 'sit down' exercises that are very basic and simple from a book, "Get Fit While You Sit: Easy Workouts for the Young at Heart."

Take care and be gentle with yourself,
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
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Re: Exercise?

Postby Kelstro » Tue Oct 12, 2010 3:58 pm

The most important thing is to listen to your body and do as much as you can. It is very hard because alot of the time (well at least with my neurologist) she doesn't have answers to my questions. I have recovered from my bleed very well which was in March and I have been able to return to my pre bleed workout routine, with some limitations.

I completed my first half marathon last month, but took it slow building up to that point.
If running is your passion and was before your bleed, take it slow, even if you just start by walking and build up to jogging short distances. Listen to your body and only do what you can, don't push it. Like Kirk said, it's not worth making yourself feel worse just for the sake of doing it.

You don't necessarily have to stop doing the things you enjoy because of your bleed, you just have to be cautious.
All the best
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