Exercise intolerance and intracranial hypertension
June 7, 2020 5:56 PM   Subscribe

My partner has idiopathic intracranial hypertension. They experience exercise intolerance. They want to exercise without feeling horrible afterwards. How?

Partner has idiopathic intracranial hypertension (IIH) and is on Diamox, but it's a constant balancing act between too much Diamox leading to low pressure headaches and not enough Diamox leading to high pressure headaches. Their doctor has told them they need to exercise regularly as part of treatment (for this and other issues). The problem is, every time they exercise, even for just 10 minutes doing light sit-ups or stretching, they get a bad headache and often nausea as well. Pretty much every page on IIH says "exercise can worsen headaches due to increasing intracranial pressure" and then a few paragraphs down "one of the best ways to treat/prevent IIH is getting lots of exercise!" Okay, how? I'm usually pretty good at searching for this kind of information, but I haven't found any suggestions for keeping intracranial pressure down while exercising.

They talked to their ophthalmologist (who treats their IIH) about the problem and he was surprised and said that he'd never heard of that and none of his other patients with IIH complain about it. His only advice was taking ibuprofen before they start exercising. Well, that didn't work. Is there anything else they can try, before, during, or after exercise to either reduce intracranial pressure or address the headache that comes with it? Should they be laying down after, standing up, something else? They already drink plenty of water, and they're doing low-impact exercise. Any exercise they have to do has to be able to be done at home, this is non-negotiable, so swimming or anything like that is out.
posted by brook horse to Health & Fitness (11 answers total) 3 users marked this as a favorite
This article, from the journal US Pharmacist, references a list of causes of exercise-induced headaches -- IIH among them -- and makes suggestions on prevention, treatment and management.

(I am not a doctor or a pharmacist, and this is neither medical nor pharmacological advice.)

Instead of taking ibuprofen before exercising, the authors recommend taking either Indomethacin or beta blockers instead. When I ran Indomethacin through the Drugs.com checker, I found that it has no apparent interactions with Diamox; beta blockers, on the other hand, have a raft of them.

The authors also make non-pharmacological suggestions. I won't mention all of them, and I apologize if any of them seem obvious. (I've been told the sleep hygiene stuff by docs re: my ADD, my idiopathic generalized epilepsy, my Hashimoto's disease ...)
Staying hydrated (which you've said that your partner is already doing).

Good sleep hygiene, avoiding sleep environments that are too warm as well as alcohol and caffeine.

Eating three to six small meals spread out throughout the day.

Warming up for 15 to 20 minutes before any period of exercise.

Avoiding aged cheese, cured meat, certain tomato products and some kinds of nuts.
There's more to it, but this is what caught my attention. I hope there's something here that is useful to your partner.
posted by virago at 8:09 PM on June 7, 2020

Could part of this be that your partner has a weak core? I realize they have a diagnosed problem but perhaps a weak core is contributing. I’ve started Pilates (I got an inexpensive reformer used on eBay) and having a stronger core supports my cervical spine and reduces pain. You hardly feel like you’re even exercising on a reformer because it’s so supportive and it works super fast. I’ve started running in the mornings and that used to feel awful, it’s much better now.
posted by pairofshades at 9:14 PM on June 7, 2020 [3 favorites]

Have they tried light walking?
posted by bq at 9:22 PM on June 7, 2020 [1 favorite]

Have they tried dumbbells? I have issues with hypotension (the opposite but related, I guess?) causing me to get lightheaded whenever i do anything that involves a change in the elevation of my head...squats being the worst. Sit-ups make me feel nauseous, so instead I do crunches hanging from a pull-up bar. Dumbbells mean I can keep myself reasonably stationary. Also, resistance bands.

Proper hydration, sleep and daily vitamins helps. Alcohol and coffee do not. I started back into an exercise routine shortly before quarantine and it was definitely worse at the beginning.
posted by bonobothegreat at 9:32 PM on June 7, 2020

Fellow IIH and pulsatile tinnitus sufferer here. Based on my experience, I wouldn’t do exercises for the time being which shifted blood flow quickly from my head. No sit ups, rapid bending over and touching my toes, or anything like that. Any thoughts about getting a simple exercise bike at home or a stationary bike trainer if you have an existing bike? If that’s not an option, I’d recommend box squats, lunges, and resistance band aided arm exercises. I also have no problems with walking and running.

Ibuprofen doesn’t usually help me at all for IIH related pain. Interestingly, I have noticed that it’s worse if I’m not getting enough sleep. I wish I had a magic answer for this outside of don”t tip your head around so much, but outside of diamox, losing weight, and maybe lumbar punctures to reduce pressure, there hasn’t been a lot of solutions.

For my combination of symptoms, I’m going in for a venous stent surgery to help resolve some of the symptoms but YMMV.
posted by msladygrey at 10:01 PM on June 7, 2020 [2 favorites]

The exercise intolerance is a known thing - the neuro ophthalmologist who diagnosed me with IIH about 15 years ago mentioned it, and so did online info I found.

What I've never found, though, is a good solution. Anything beyond walking, I have a fairly low tolerance for. Since I have other health issues, too, it complicates things. I've been off my medication and not had a checkup in several years now - thankfully, I've been mostly in remission during these no-insurance years - but I just got insurance back, and I'm sure the first thing my new GP will do is ship me off to the specialist I've seen previously. I'm adding this to my list of questions, because I'd like some actionable recommendations, myself.
posted by stormyteal at 10:24 PM on June 7, 2020

I also have IIH (or rather, as you described for your partner, intracranial pressure that is happy to swing all over the place if I don't manage it well), and I would second msladygrey's comment. I can really only handle exercise where there is little to no impact, and my head stays at a basically constant "elevation". Any running, jumping, or moves that involve bending over or standing back up quickly will leave me light-headed and in pain pretty much right away.

Walking, biking, rowing, and aqua aerobics have all been good for me. I have my own rower, but that was a big expense once upon a time, and I don't think I'd recommend jumping into such a big purchase if they don't already know they like it (and besides, the good rowers are on back order at the moment). If they have a bike, a mag trainer or similar could be a good option.
posted by ktkt at 12:09 AM on June 8, 2020

Just popping back after reading the other answers and wanted to share that on a Pilates reformer you can do versions of exercises mentioned above (like squats and lunges) while laying down and your head can stay at the same elevation throughout while you just glide back and forth. Additionally you can do rowing exercise on the glideboard. Perhaps your partner can book a private session to learn about the machine and then decide.
posted by pairofshades at 1:09 AM on June 8, 2020

Response by poster: Thank you for all the suggestions so far! I should note we do have an elliptical that we bought used about 6 months ago. That caused them problems too, however, we recently realized that the resistance was turned on. I turned the resistance off and it's been much easier to use; they haven't used it since before I turned resistance off, though, so maybe they should try that again and see if it works any better for them. Otherwise we might look into some other things. My partner's mom has one of these, which I think can be configured to be a rowing machine? Though she has a much older model. But that could be one way to try the movements out.
posted by brook horse at 8:35 AM on June 8, 2020

In general, people misunderstand exercise. Your partner can walk at a normal, non-taxing pace (which for me is very slow) and that is exercise. I mentioned this earlier today on another post, but I actually cannot elevate my heart rate, so getting a Fitbit and tracking my steps was a huge thing for me. 5K, 7K, 10K whatever... it is literally all good. You don't need to be sweating in spandex to be exercising.
posted by DarlingBri at 9:09 AM on June 8, 2020 [3 favorites]

As a follow up, I just came back in from a 1 mile walk outside to a back of the head hypertension style headache. It’s hit or miss when that happens. I put a cold pack from the freezer on the back of my neck and head, and I’m waiting it out on the couch. I already took 600 mg of Ibuprofen for various aches and pains for sleeping in a bad position before I left the house. IIH is weird.
posted by msladygrey at 11:20 AM on June 8, 2020

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