Headaches

Julie ~
So sorry to hear of your rupture but I guess that’s why we’re on this site, it gives us a chance to share our personal experiences with each other.
My rupture was in October 2011, I have 9 coils & have done all my follow ups as my neurosurgeon recommends. My last one was in November 2017, he found an artery in my neck that was 85% blocked so in January this year he put in a stent. This blockage happened in 3 1/2 years, it wasn’t there at my last angio. Please do not skip any follow ups they could save your life.

I have had a headache everyday since my rupture, I’ve gone to numerous neurologists only to be told they’re not from the rupture. This site only confirms my thoughts on this, there are so many of us on here that have been told the same thing, & yet we all suffer daily from numerous side effects from our ruptures. These so called specialists don’t walk in our shoes everyday, we are living this, they are not.

My heart goes out to you, it has to be really hard to deal with this & have a 2 1/2 year old that needs your attention as well as your other responsibilities. I was 56 when mine happened, I returned to work after a couple of months but after a couple of years I had to retire due to confusion, lack of concentration & the headaches. My husband is very supportive, I’m so lucky to have him. I hope you have a supportive family that can step in when you need a break.

Please be nice to yourself & listen to your body. Feel free to contact me anytime, were all here for each other.
Ginger

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I don’t have an aneurysm but I have had migraines for 30 years. Coming at this with migraine experience, could the headaches be from swelling/inflammation? It wouldn’t take much of it to bring on a headache of epic proportions. Migraines can cause swelling of veins and arteries in the head all on their own, since everyone who has had coils or ruptures, which I assume cause some degree of damage, is also speaking of headaches, would it make sense for micro-inflammation to be involved? It wouldn’t show on any test.

With that in mind, rather than going with pain killers, has anyone tried anti-inflammatories like naproxen (generic anaprox)? Prescription strength, not just OTC.

Just a thought.

azurelle

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Dear modsupport,
Thank you for Shari g your thoughts, this is a great question to ask the dr next time I see them. The only thing is that my neuro-interventionalist told me I was only allowed to take tylonal, no aspirin or naproxen, which stinks for me cause I used to use alive and that worked great. Maybe there is another anti-inflammatory that they can say is safe!
Thank you so much for your input.

I’m thankful for all the info above since I’m new to all of this and my neurosurgeon - although apparently considered a genius in surgery hasn’t been particularly verbal unless he’s bedside post surgery when you’re all groggy. My neurologist (I was seeing for a totally unrelated issue prior to SAH and surgeries) has actually been more informative than anyone at the hospital. He’s the one that gave me the topiramate to take at night. I never had headaches before this. The neck pain is what worries me - everyone seems to discount it but most of the time it’s at the base of my skull and my SAH started with debilitating neck pain - not a headache. smh

One unruptured aneursym that caused a stroke. Pipeline coil embolization August 2015. Daily headache since then. The surgeon told me to never stop telling doctors about my headaches. Still trying different preventatives-nothing working yet and with the opioid crisis can’t get proper pain medication. Waiting for my medical marijuana card hoping I can find something there to at least give me some relief until we can find the correct preventative. Neuro said my headaches sound like tension also but I do also have PTSD so I believe that. Still same treatment though-prevent.

Hi all!

I am new to this support group. I had surgery for an un ruptured anyrysm in dec 2017. I have been headache free until 2 weeks ago. Now I have a headache everyday on the opposite side that I had the surgery ( pain on left , surgery on right ) and my jaw pain on the right side came back this week. Is this normal? Is this the nerves coming back? Today it was full head pain, especially when I cough. Thanks everyone!

Hey ymeisler,
Every surgery is different, so, ‘Is this normal?’ that all depends on the location of the annie and the type/location of the surgery. As things heal the pains will differ. My last surgeries were in 2013 and I still have days where I’m tempted to remove my eyeballs with a T-spoon, the pain behind them is just SO intense add to that a cough or even worse a sneeze and my head is ready to explode. Some people can have specific pain in a specific area but mine varies so much both in location and severity on a daily basis. Trying to plan things around pain is impossible because I can never tell what ‘today’ will bring(nor tomorrow for that matter). I now look for changes in pain ie new locale or a progression of symptoms ie nausea, visual disturbances. When these occur I know I need further medical advice.
If you are concerned I’d be recommending you get further medical advise too. They may say it’s nothing to be too concerned about, but by the same accord if it is something major and you ignore it there may be consequences. I say this because I have ignored symptoms previously (on my pcp’s advice) only to be berated by my surgeon as there was a major issue for which further surgery was required. Be on the safe side, get it seen to.

Merl from the Moderator Support Team

Ginger I always have headache I have to stay on aspirin for the rest of my life

Sandra
Sorry you are dealing with headaches. It’s my life now, if I don’t wake up with one it’s usually there by noon or the afternoon. I’ve had 2 rounds of Botox injections, they do them every 3 months, it has helped in that I don’t usually start the day with one but I still have one everyday. The side effect I’ve noticed with the Botox is it has caused super swollen eyelids. I put ice cold water on them every morning along with a cooling eye gel but it hasn’t helped. I’ve also noticed my eyelashes aren’t growing anymore. I’ve always had long eyelashes which ive been told is my best feature. I hate to sound vain & I know I’m lucky to be here but it’s pretty frustrating to me.
Does the aspirin help with the pain or do you need something stronger? The neurologist I’m seeing right now has diagnosed me with chronic migraines. He said I’m more susceptible to them since my rupture. I take Advil migraine along with a Tylenol & if that doesn’t make the pain tolerable some days I will take 1/2 of a norco. Talk to your Dr, maybe he can suggest something for relief.
Wishing you relief real soon, feel free to contact me anytime.:two_hearts:

Sandra,
I am five years post surgery I still have them, however they are not everyday like they were. I can tell you they do get better as you learn to manage stress.
Rich

I have headaches whenever the weather changes it seems. I thought I was making it up-but I have started watching the weather when I feel really bad. My doctor said the headaches were not related at all. Also he said there was no reason for my narcolepsy and being so completely tired. I have sat in the doctor’s office and cried and said I am so tired I can’t take another step and he said, I just don’t know why?

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I understand what you are talking about , very tired of headeches , and very tired in general … I feel normally only when I rest a lot , living in no rush mode and working very moderate :slight_smile: which happenes once a year for a month . I don’t know what is it … nothing really helps … I was thinking may be the problem is in my spine and I need to do more yoga and exercise … still a question … can only sympathize , still looking for the way how to fix it for myself …

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Hey lelarach,
Weather is a common variable for many of us and the same with the headaches. Some dr’s are reluctant to align the 2 ie headaches and surgery, but let’s face it, the fine circuitry of the brain has been disturbed, there simply must be a flow on effect. For some people the effect can be minimal and that’s fantastic for them BUT for those of us who have ongoing pain the medicos denial of cause/effect can be infuriating. A few weeks back I actually had a neuro (for the first time EVER) admit that they really do not know why some people have minimal pain and yet others have MASSIVE issues. But they know it does occur.
I can guarantee you, you are not the only one to have ongoing issues with headaches. I suffer (and I mean SUFFER) each and everyday with mind numbing, nauseating explosions of agony, it’s been 7yrs of it so far. The word ‘Headache’ just does not express it adequately. When I say I have a headache other’s sometimes say ‘Ohh I get headaches’, often I’m tempted to say ‘Not like these you don’t’, but instead a smile and think to myself ‘you have no idea’.
Just know you are not alone.

Merl from the Moderator Support Team

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Hi Moltroub!
You mention that you had an SPG block and that it worked. This has been recommended for my headaches as well. Did this work permanently or do you have to have SPG blocks incrementally? Thanks!
Jennifer

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I just got out of the hospital from a ruputured “Annie” repaired with a coil . My neurologist and staff told me the headaches could last a month or a lifetime. That was encouraging. They also told me they are tension headaches and gave me Butalbital-Acetamin-Caffeine 50-325-40. Works well but makes me a little sleepy but right now everything makes me sleepy. I take 2 other medications for anxiety (tension) so my insurance company won’t pay for it. My PCP doesn’t want me to take it but won’t give me anything else either. I have access to Gabapentin but 100 mg a day will knock me out for 2 days. I am super sensitive to medications…Benadryl is good for 24 hours of sleep. Right now nobody is doing much to help. I am just trying to line my doctors up and getting them not only on the same page but reading the same book.

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To all of us that are still suffering from the headaches, my neuro vascular surgeon sent me to another neurologist. He suggested Botox which I have been staying away from, but after 7 years of daily headaches I finally agreed to try it. I had my first go around last September. The first day I didn’t wake up with a headache, but around noon it set in. I try taking Advil cold & sinus before anything else & it usually makes it more tolerable. I just had my 3rd set of injections of Botox & for me it has helped in that I’m not waking up everyday with a headache but usually around noon I have one, this is everyday. It has side effects too but for me it’s been good to have at least the morning to get things done.
I wish there was a REAL cure for all of that now have to live with this, all we can do is continue to try and find what works for each of us.
Wishing you all luck in finding that.

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Sorry I didn’t get back to you earlier Jennifer. I had two actually a couple years apart. They helped dramatically. The second hurt so bad, I never wanted another, luckily I haven’t had to go back. The Radiologist who did mine had me lay on a table that had an X-ray machine. It’s how I knew my aneurysm looked like a pac man and then a witch hat. He shot me with I think lidocaine, but don’t quote me. And then put something similar into my brain through the nasal cavity. My Neurologist at the time said many of his patients only have it do it once or twice but that it can be done every six months.

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Thank you for your reply. I was afraid that it might be unpleasant. I had my nose scoped years ago and it was awful. We are currently trying carbamazepine to see if that works first. My local neurologist seemed very reluctant to send me to anyone local for the block and that makes me even more concerned about the procedure. Thanks again!

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This may be unorthodox, but I get my best relief now with just some peppermint oil that I mix in with a carrier like flaxseed oil or coconut oil. I use it at my temples and around my sinus areas. Don’t mix it to strong with the peppermint as it can make your eyes feel like they’re burning. From what I understand, there are different methods of the SPG block. I just went to the American Migraine Foundation and found this. https://americanmigrainefoundation.org/resource-library/sphenopalatine-ganglion-blocks-in-headache-disorders/

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I use peppermint essential oil but you probably right about mixing it with other oil , I never did , but tolerating it well. . It’s the only thing that works a little bit with my headeches . If I put at the moment it started , it can even reverse the process sometimes ( stop ), however in most cases it helps me to survive … without this peppermint it would be impossible for me …

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