Daily headaches and weird triggers

[ahorton86]

Hello all,

 

I’ve been perusing this site for a few months now and I’ve found it more useful than anything else I’ve found online. A huge thanks to all of you!

 

My wife had her NASAH almost a year ago now and unfortunately has had a headache ever since day 1.

 

While they have definitely calmed down since the original event, there still has not been a moment of 100% relief from headaches.

 

She was 28 years old when her event occurred and in overall good health. She had a flowering up angiogram about 5 months post bleed and everything was fine according to the doctor. I know that no two bleeds are alike, but I’m just tying to find any advice at all, if any of you see similarities in your own stories.

 

She has tried many medications, I won’t list them all, but I feel like she’s tried most meds minus the harder opioids and alike in fear of developing a dependency. She has also tried acupuncture, with little true success, but if anything it is relaxing for her. I think these are common for a lot of people but we are open to any other suggestions that have helped others.

 

I am constantly reminding her to drink fluids and rest as much as she can, but she is defiantly a woman on the go go go more than she probably should be. Anyways, one weird thing we have noticed a few times now is that a shower, particularly a hotter shower, will give her a sudden, horrible headache. The first time it happened of course it was scary for her and me both, but a good night‘s sleep seemed to help it subside.

 

It has occurred after taking her nighttime meds and before with no differences that we can tell, so even her meds don’t touch it enough to see a difference.

 

Has anyone else had this issue? I did read that showers can cause headaches, but this only started happening maybe around 7 months out from her bleed. Maybe it just one of those weird things? Do many people have headaches this far out from their bleed 24/7? Should we be worried?

 

I hate asking these questions, as I’m sure they have been asked many times, but I just do not know where else to turn. Any information is greatly appreciated, and again, thank you all so very much. 

[jess]

Welcome xxx

 

I am 17 years out had my rupture at 23 my headaches were horrendous still are occasionally xxx

 

Two things worked for me I used white tiger balm on temples and behind ears at the base of skull also got a Himalayan salt lamp I have it on whenever I am in the room with it (Mine is in bedroom keep it on all night) but you can have more than one so where ever your wife sits maybe you ought to put one xxx

 

If she experiences any new or changed pain see a Dr to get checked hope things improve soon xxx

[SarahLS]

Hi there,

 

I'm almost two years out from my NASAH now and I still haven't had a pain free day. Most of the time it is a dull background pain that I can tolerate but around 4-5 times a month is gets a lot worse, with a few being terrifying. Often sneezing is a trigger to increasing my pain which is an activity hard to avoid!

 

I do find that drinking a lot of water and pacing myself helps but this has meant quite a change to how I live my life.

 

I know we can't give advice but my story is that my neurologist is aware of my headache frequency & hasn't seemed too bothered by them so far (I have an appointment in 3 weeks for a follow up so we'll see then) and my GP has recommended soluble paracetamol as one of the most effective painkillers.

 

Since having the bleed I've found my GP and neurology department very reassuring and if it were me with these new symptoms I'd be chasing both for new, urgent, appointments - I've learned what my new normal is and do get new variants checked out.

 

good luck,

sarah

 

 

 

[Winb143]

Hi  AH,

 

I had headaches after I had shunt put in, before that I don't remember much.

 

Since my pills have been changed I do get headaches every am after pills -  a coincidence maybe, but nothing a paracetamol wont get rid of.  I try and not take any other pills as on enough as it is.

 

Wish you and Mrs AH all the best and hope her headaches subside,  when stressed they play me up more.  

 

See doc again and let him know and it will maybe put her mind at ease and less stress for both of you.  Nothing like peace of mind and knowing you are not alone in this. 

 

Good  luck to the two of you.   

 

 

[CharlieD]

Hi, 

 

I am sorry to hear your wife is still in pain. I am 18 months and have a headache every day. Sometimes they are worse, sometimes sharp and sudden, sometimes constant throb. They have changed over time and new things have started up. Having said that other things have improved so I am very lucky in many ways. 

 

I thinking finding a good neurologist is so important. I pay to go as the waiting time on NHS is so long at the clinic I was at. I intend to pay twice a year for him to review me and my meds and that gives me piece of mind as I find my GP'S do not get the extent of the headache problem or the after effects of SAH's. 

 

I do find yoga helps and breathing exercises and listening to the CALM app helps with the pain. 

 

All the best.

[V.Mama]

Hello 

 

My husband had his SAH is May 2019.  Like you, this site has been my lifeline to support and information.  As you have probably found, when neurosurgeons declare your loved one 'fine' it does not mean everything is good.  In my view, it just means that he/she survived the bleed and is walking and talking, so their job is done.  

 

My husband still has a headache, he describes it as being 'in the background' and sometimes his head feels woolly as he calls it.  He can't bend down , sneeze or squat without his headache worsening.  He takes panadol and rests if the pain gets too much.  If he has a particularly busy or active day he suffers the next day, and feels like his head is spinning, his headaches are worse, and he is fatigued.  

 

Regarding the sudden headache in a hot shower, my husband has not reported a problem like this.  As others mentioned, there is merit in asking your wife's neurologist for an opinion, given it was a change in symptoms at 7 months.  

 

We have watched our loved ones endure the most horrendous pain and suffering, and survive, it does shake us up when our loved one experiences a worsening of symptoms, especially when it mimics the initial onset of the SAH.   I hope you and your wife get some answers to ease your minds.

 

Veronica

[Daffodil]

Hi, 

 

a hot shower will have an effect to raise your blood pressure, albeit the effect may be marginal but even this slight change can bring a headache or dizziness but I would always recommend talking that through with a neurologist if you can and seek some professional advice. Take a cooler shower and maybe sit for a while after rather than just lying down . 

 

There is a need post bleed to ‘regain’ ‘reclaim’ our lives as we knew it and to try and pick up where we got knocked over and for a few that works just fine. For those that don’t have obvious physical deficits that are common it can be harder as they seem’back to normal’ but of course there is healing still happening. 

 

Most who come through BTG report however it’s not ever exactly the same, things we did with ease, seemingly with no effort or ill effect now takes its toll on us and then that effect cumulates together and it shows up with ‘brain fog ‘ and other effects. 

 

There are things that are just everyday life events ‘triggers’ which for me run my cognitive battery down fast, I’ll give you something examples of things that effect me:

 

strong wind

loud repetitive noises

people talking over each other

hormonal changes

sudden drops in barometric pressure

bright flashing lights

 

I call these my triggers and the effects will give me ‘warning lights’. if I experience these kind of triggers I know I need to make some adjustment, it may be to wear sunglasses inside, earplugs, a hat, but even then I know if I do something else that is cognitively demanding I’ll have less battery charge left And then I’ll get my warning lights;sudden headache, increased fatigue, balance issues, losing words , and if I don’t change my pace and rest and slow then it will get worse. 

 

Im seven years in, but was 39 when I had mine and had two young kids , good job. What I have had to learn is to really let go and focus on what was right for me to get a balance that keeps me steady to enjoy every part of my life. Know where the effort needs to go. 

 

Tell her to get BP checked, maybe also her vitamin and minerals (bloods) and then to just take stock and to ask herself is it possible she asking too much too soon.

 

if she had hip or knee surgery she wouldn’t be back running marathons. She needs to ease her brain in gently and be kinder to herself. She’s still healing from a trauma to her brain. 

Daff