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.
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.
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.
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.
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.
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.
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.
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.
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).
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.
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.
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.
I also have ongoing, what I call, "post stroke migraines." I get them as often as twice a week to sometimes non-stop. I have been to every kind of specialist there is on the west coast that deals with strokes and headaches. The headache diaries are my "favorite"...not!!! I too have my left internal carotid artery dissected and occluded and I had a subarachnoid hemorrhage at the same time. A rare coupled with a rare and I survived...obviously. I laugh rather than cry. There's no point in letting it control my life. I won't let it win. I totally validate the please put me out of my misery level of pain. I've discussed it with my neurologist, GP, and pain management doctor. I am currently in 13 daily medications and I STILL have break through headaches. Beta blockers. Calcium channel blockers, anti depressants used for their side effects, topomax, and long and short acting opiates. My neck and shoulders get so tight when I get a bad one the physical therapist tells me he's never worked on anyone so tight in his 35 years of practice. It's my cross to bear and beat and as terrible as it is to say, I'm just so glad I'm not alone in this. Group sessions and blogs have helped me so much when I feel like I've been hit in the head with a metal baseball bat then had a red hot poker shoved into my temple. I'm not a depressed person but when a level 8-9 headache hits...I pray a plane will drop out of the sky on me. I stay away from the triptans. I blame Imitrex for my stroke. As bad a drug as topomax is it's the only one that has truly helped long term at high dose (300mg/day). I hope you all find relief, or at least momentary relief. It's a tough road but it was made curved so we can't see to far down it.
I'm happy to report that over the past 3 months I have been getting little to no headache pain. I can't tell you why, but I can tell you that for 6 months I stayed away from doctors! I found my own therapies in yoga, meditation and relaxation, daily naps, exercising and eating right. I will take pain meds only if I feel a headache coming on,and take them early to catch it early. Have you ever tried yoga for your tight neck and shoulders? I also had that and still do but not as bad anymore since I learned the stretches and do them regularly. I don't mean the crazy yoga classes like Bikram or something with a lot of movement. I mean very gentle classes, sometimes called restorative yoga. It must be gentle. They are wonderful! I recently went to a neurologist, and he wants to check me for sleep apnea to try to find a possible cause for the stroke.
I had traumatic subarachnoid hemorrhage. It has been two months now and I suffer from headaches, tinnitus in both ears and still have no sense of smell. Sleep is terrible. I too feel stress makes everything worse. I'm interested in the alternative therapies you have found to work on the headaches. I hope all this gets better in time.
My wife is a similarly situated SAH 20 year survivor. She to has severe migraines and headaches and has tried numerous medications for relief. The only medications that are truly effective for her is Maxalt MLT 10mg (it needs to be taken fairly quickly after a headache or migraine starts otherwise it is less effective.) The generic name is Rizatriptan. If you also suffer from naseau you might also want to take a medication called Ondansetron melt (often referred to as Zofran.)
An alternative to medication is a treatment called EEG Neurofeedback. This has been the most effective non-pharmaceutical treatment for my wife so far and has actually lessened the number, intensity, and duration of headaches and migraines. The treatment is offered by specially trained Ph.D level Psychologists. If you want more information feel free to ask.
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