Migraines & Headaches Community
Headaches post subarachnoid hemorrhage
About This Community:

This forum is for questions and support regarding migraine and headache issues such as: abdominal migraines, headaches caused by allergies, cluster headaches, headaches, headaches in children, migraine headaches, sinus headaches, tension headaches, visual disturbances.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Headaches post subarachnoid hemorrhage

I almost started this as "I never thought I'd be writing something like this..." and then realized it sounded like something that belongs in an x-rated magazine.

At any rate, I really did not think I would be saying, at the age of 48, that I had a type of stroke (subarachnoid hemorrhage). Why? Because I am a very healthy woman. I am a marathon runner, full time high school IT teacher, a personal trainer, running coach, and weight loss support. I have done absolutely everything “right” to avoid things like heart disease, stroke, and other conditions that can be related to a sedentary lifestyle and bad diet.

Nevertheless, in Jan of last year I had a horrible headache; the absolute worst headache of my life. Long story short, I had a bleed in the subarachnoid space around my brain, near the brainstem. As far as anyone told me it was a light bleed, not very serious. I was in the hospital for three weeks because there is a high incidence of vasopasms after an SAH due to the blood in the cerebral spinal fluid. I was released to return to work less than a week after I was discharged.
Since then I have had a daily headache. Generally the level is around 5, with 2-4 days a week of really serious “somebody just shoot me, it couldn’t be worse than this” pain. I have been on a number of medications that haven’t helped (calcium blocker, beta blocker, and now amitryptiline). I also had Botox injections (for migraine) about three weeks ago. Nothing has helped.
My neurosurgeon said they would go away in 4-6 weeks, my neurologist she sent me to when they hadn’t gone away kept saying “I still think they will go away” up until we hit the one year mark. Now he’s not saying that any more.
I have tried eliminating caffeine (that was the longest 10 minutes of my life), artificial sweeteners, and not a big chocolate eater (can go months without it), and other common migraine triggers. I have not ever suffered from food sensitivities in the past, outside of walnuts making my mouth break out.
I’ve had CT scans, MRIs, MRAs, dopplers, and MRAs on my head and cervical spine. I also had a sonogram on all major blood vessels because I have a very light case of Fibromuscular Displaysia (not causing headaches at this time). I even had a spinal tap the last time I went to the ER in so much pain I wanted them to just put me out of my misery.
My neurologist doesn’t want me to use narcotics, and I agree that it is not a good thing to use on a regular basis. No OTC treatments even nudge the headache away.  I still have morphine from when I was released from the hospital (over a year old) that if it’s really bad I will take, but probably not more than one time a month. Most of the time I just suffer. (And I will punch the first person in the throat who says “If I had a level 8 headache I couldn’t just suffer”. I have a very high tolerance for pain as is evidenced by running ultra marathons of up to 50 miles, so far. That is not a pain free experience.)
I know it’s a shot in the dark because SAH is a very rare condition (about 5-7% of “srokes” are SAH and usually are accompanied by aneurisms or AVM, and of those 50% don’t make it to the hospital so I’m in a VERY exclusive club…I know you’re jealous. Don’t be a hater.) Anyone deal with this? I have one friend who posted on a Facebook group of crazy insane marathoners that I belong to “I ran my first full marathon since having an SAH about a year ago.” I friended her and we have become great friends, and she deals with the same headaches and no treatments have been found to work for her either.
Anyone? Anyone with chronic non-migrainal headaches? I get no pre-drome, aura, or postdrome. I get headaches, tinnitus in one ear, fatigue (harshes my running mellow, I must say), and everything is on both sides except tinnitus. Head feels hot, and the headache itself I can describe and somewhere between an ice cream headache (not an ice pick headache, though) and a giant charley horse in my brain. Now, 16 months later, to still be dealing with this pain is so depressing and I tend to be a happy clappy Pollyanna, “Ain’t it just a great day, by golly?” kind of girl. I miss that.

Any strange treatments short of buying crack from some guy named Shorty-D on the streetcorner? I have tried a lot, but I'm so frustrated I will try just about ANYthing at this point.
14 Comments Post a Comment
Blank
596605_tn?1369950227
I had a chronic head ache after pituitary surgery in 2006. It only resonded to opiates.

Now many years.later,   After seeing my umpteenth doctor they have said that the surgery basically caused a TBI. A s a result I suffer from facial pain known as trigeminal neuropathy from nerves that decided to fire after my surgery.

What has worked for me are three things. 1. Opiate pain meds 2. Cymbalta 3. Having the facial nerves assessed and ablated using a technique called Radio Frequency ablation.

I am working with a pain management at a hospital similar to UCSF.

So I rec that you get referred to pain management t have your situation assessed.

there  is hope.

Good luck
Horselip
Blank
5092217_tn?1367270227
Thank you! That is very interesting. Obviously the occult blood in the CSF is long gone so it can't be from that, but I have wondered if that has triggered something else.

I have not gone to a pain management doctor. I think partially because I worry that they won't believe me, and partially just having hope that the next thing will work.
Blank
596605_tn?1369950227
Glad to have helped maybe? Pain management centers often deal with headache patients. There are over 300 types of headaches! Many of the nerves on the head are associated with the trigeminal nerve. There are type ones and type twos. Some folks even have a combo of both. You might read up on trigeminal neuralgia and or neuropathy. The treatments sometimes include the use of epilepsy meds and so on. so these center tend to be well versed with facial and head pain that might not be migraine.
Horselip
Blank
5092217_tn?1367270227
Excellent! I will pursue that and learn more. At times I can have two headaches; my regular daily headache, and another one from tension etc. So this is very different from a regular tension headache.

I feel like any time I can get more information, it helps even if it ends up not applying to my situation. I learn something new, and can rule out other causes.

So far the Botox taken almost a month ago hasn't helped. I go in for another round on Aug 2 but have no appointments before then. When school is out (I'm a teacher as well as a trainer) I'll look into a pain clinic.
Blank
596605_tn?1369950227
I have two different head aches too. One seems to be nerve related while the other could be migraine.

For the one that did not respond to the Radio Frequency Ablation, I'm going to start Botox treatments. I will heed advice by others so I will ask about the dose and keep good notes.

Interesting that we ashore this.
Horselip
Blank
5092217_tn?1367270227
Like I said, I had the Botox in May. It was 32 injections...wasn't painful. There were a few spots that it was probably close to a nerve and they were a little more ouchy, but for the most part it didn't even feel like a shot, more like a tiny prick. When all was said and done I had a bunch of red dots on my forehead. The rest of the shots were temple past hairline, back of head, back of neck, and trapezius. Some have reported rebound headaches from them, I didn't have that. I noticed it starting to "take effect" about 3 weeks in when my eyebrows didn't move much any more. I knew at that point that I should see results, although some don't until a second treatment.

So far no headache benefit. I go in for a second treatment in August. The neurologist said he wanted me to do at least two treatments, even if I didn't see any impact.
Blank
5092217_tn?1367270227
Updating--

Still with the daily headaches. I have had four botox treatmeants. I don't believe they are helping. I am going to discontinue because there is no point in paying for it.

I am now seeing a headache specialist at the University of Washington. I don't know that anything miraculous has happened. However one of the plans is to calm the nerves down to the point that I can get on Cymbalta. She feels that the issue is that the TBI isn't healed, and the pain neurons are so over stimulated that we're using a variety of drugs, supplements that help the body to create natural pain killers, exercise, and exposure to sunlight (I have an Rx for  going outside) to calm the neurons down. At that point she feels Cymbalta will help with the continuing pain. I sure hope so.
Blank
596605_tn?1369950227
Thanks for writing. It's always nice to hear from someone that you responded to and get an update. Good luck on the Cymbalta!

I've had three Botox treatments now myself, and like you I don't think that they are helping me either. My doc just upped the Cymbalta to the max dose and I've also started Neurontin. The last round of RFA's, are kicking in I think...(could just be my pain cycle is at a low) and I continue to get benefit from the oxycontin at the 20 mg dose.

Some less invasive things that seem to help are : laughter, venting (I see a pain psychologist weekly), and I got a companion doggie.

Just keep in mind that there are options to Cymbalta so there are options after that if it does not work for you.

Happy Holidays
Horselip
Blank
Avatar_m_tn
Hi msteechur,

Sorry to hear the Botox isn't working.  I was hoping it hear some positive reports about it in SAH patients.  Your Neurologist seems quite correct about the neurons in an excited mode causing a heightened to external pain triggers.  FYI, that is what would be demonstrated in a EEG Neurofeedback treatment protocol.  My wife gets these treatments and it is helping to calm down the pain neurons but not entirely.  She has had about 22 EEG treatments and she has made some progress in reducing the duration of the migraine days down to about 1 day from 3 days.  We suspect that she'll get more then 50 treatments from the present 22.  Fortunately the new health care policies will help cover the treatment costs.  If you haven't investigated EEG Neurofeedback I encourage you to try it as it is non-invasive.  Your toughest challenge will be finding a provider in your area.  If you need help finding someone just let me know and get a list for you.  I hope you have a good day.
Ed
Blank
5092217_tn?1367270227
I try to remain positive. I am, blessedly, a positive person. There are times I get depressed about the situation, but I have not sunk into a depression. I love life, love my job as a teacher even though it is challenging. I love being a fitness trainer and running coach and find that running is a HUGE respite from the pain at times. Last night I went on a late night run and the combination of the cold weather the endorphins allowed me to have a nearly an hour of relief. I am able to run longer runs every few weeks where I will have an hour or more of pain relief that I can't get from anything else. Running is actually part of my prescription and it helps me retain my identity as an athlete (not a great one, but let's not get into semantics).  If I didn't have that I would be depressed.

I agree that venting is important. One thing I have learned with the stroke is that emotions need to be handled and not held in, period. I can't get upset about things or it spikes the headaches. This truly has been a HUGE blessing of this experience. On Wednesday I had a huge crazy busy day and during it my husband texted and called to tell me my business account was overdrawn because someone had used my debit card to steal all the money out of my account. Neato! Started to get upset, head went from 5-8 and I realized, "Calm down, can't do it. Not the end of the world." I calmly called the bank, let the kids handle my visitors, relaxed, took care of the problem and all was good. I didn't hold the emotion in, I just didn't allow it to overwhelm me.

But also I find that if I am getting depressed or upset by this big change in my life (the only other time I've had pain is if I've had a heavy duty workout since I love 100 lbs because I have been so adament about taking care of myself), I let myself feel that. I have to. I can't bottle it up or it manifests itself physically in more pain. I am always telling people who have kind of "come behind me" on the SAH boards I chat on, "Feel what you feel. None of it is wrong  or bad."

I will talk to my Neurologist about EEG Neurofeedback. That sounds like something that could definitely help and be none invasive. I like that. I'd love to get away from taking a handful of pills every day (although most are supplements).
Blank
Avatar_f_tn
I suffer from daily migraines and would like to offer you what I have learned from the University of MD neuromuscular clinic.  

Outside of the food elimination list (which you are already aware of) they claim Magnesium and B2 supplements are reported to be helpful for migraines.

My situation of course, would be slightly different as I had a whiplash type trauma to my neck which is in a limbo diagnosis of Chiari Malformation.  In addition, surgical menopause happened 9 months later which can also cause migraines.  Currently on hormone replacement therapy however I can't report that it has helped at all with these horrific migraines.  

Daily episodes of dizziness accompany my migraines which is progressively getting worse to the point of balance issues so a trip
to the ER gave me a dx of vertigo.  Come to find out through a neurosurgeon what I have is not vertigo (as the room does not spin) but an instability issue in the neck.

Recently went under cervical/thoracic facet injections.  I did not have a migraine for one week prior to the injections but must say that I did not have a migraine for 2.5 weeks after the injections nor did I experience the dizziness, light sensitivity, etc.

Facet injections are for diagnostic purposes only.  Apparently, they would like to do another set however my thoughts are if they are for diagnostic purposes only, not sure I would endure the process again.

Hope you find relief for your migraines sooooon !
Blank
Avatar_n_tn
I could have written your posts myself.  It is so good to hear I am not the only one.  I had a subarachnoid hemorrhage last June.  Like you, I have always done everything "right".  I was a runner, play tennis, yoga, walk, bike, etc., and try to always eat "right".  The thunderclap headache and hospitalization was (and still is) a total shock.  I am now left with headaches as well.  After 7 months, I am now wondering if they will ever go away, although the doctors said to give it 6 months to a year.  I also notice that emotional situations will bring on the headaches for sure.  But then other times I can simply turn over in bed and have one come on.  I am glad to hear you are back to running.  I am afraid to run.  I have gone back to all of my activities other than running.  I am afraid of stressing my body that much that it will happen again.  It has been over a month since your last post and I am wondering if you have found anything that helps.  I have not yet been to a neurologist (neurosurgeon discharged me), but am guessing that it would be a good idea at this point (although they don't seem to have helped you!)  Very frustrating.  
Blank
Avatar_m_tn
Hi,
Sorry to hear your received the same advice many brain aneurysm patients get from quite a few Doctors as patients are dismissed.  Fact of the matter is it doesn't end six months or a year later.  My wife is on year 20 after her rupture and nothing has changed much.  We have learned quite a bit why pain as you describe occurs.  It's sad that it does occur but what is the alternative.  I just wish the medical community took a more active role to research why this happens to post aneurysm patients.  

I suggest you seek guidance from a Neurologist but as I also suggested to msteechur regarding EEG Neurofeedback.  This type of treatment helps the brain reset and recognize that the foreign object now in your skull is not a threat.  I use the term "Brain Psychology" which is different from what we know as Psychology or Neuropsychology.  I believe that when the brain is studied as a separate organ with its own psyche, we can begin to understand why the rest of the body organs and systems react as they do.   The placement of a foreign object within the brain such as metal, the brain seeks to have the object removed because it is deemed a treat to it.  Think of it this way: when someone gets a stomach virus, the brain, through the neural connections to the stomach suggests to the digestive tract that the virus is a threat to the brain and it commands the body to rid it by all means necessary.  In the skull region, the brain doesn't know how to recognize what the foreign is so its first defense is pain, followed by nausea.  It seeks to rid the body of this treat.  EEG Neurofeedback seeks to help the brain recognize a calm setting and helps it seek such a setting.  So when viewed in this manner the brain diminishes its response to the treat.  I would hope a medical professional would chime in on this theory as it can only advance help for you and others whom are similarly situated.
Best Regards,
Eddie
Blank
Avatar_n_tn
Thank you Eddie, for your response.  It makes sense. I did not have either an aneurysm or an AVM. No surgery.  I hope your wife finds relief with these new treatments!
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Migraines & Headaches Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
How to Silence Your Inner Critic an...
Apr 16 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eaters: How to Silence Yo...
Mar 26 by Roger Gould, M.D.Blank
1344197_tn?1392822771
Blank
Vaginal vs. Laparoscopic Hysterecto...
Feb 19 by J. Kyle Mathews, MD, DVMBlank
Top Neurology Answerers
620923_tn?1398277065
Blank
selmaS
Allentown, PA
1780921_tn?1384615710
Blank
flipper336
Chandler, AZ
Avatar_m_tn
Blank
Eddie1994
PA
Avatar_f_tn
Blank
sara12345
Avatar_f_tn
Blank
bean418
Maryland, MD
Avatar_m_tn
Blank
Ball123