Headaches

I also have headaches all the time I am 14yrs in and I also have dizzy spells my Dr said it is labyrinthitis after 14yrs but brain scan came back clear so no new aneurysms xxx

Hope your head pain goes

Try putting white tiger balm on temples it works xxx

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I still have headaches, neck pain, brain feels cloudy, major issues with short term memory, fine motor skills not great, balance off and get these brain freezes like I drank something frozen. The best part is my Dr.says it is stress or coping issues. My Coiling was 6 months ago, They believe that I had a bleed but it stopped on its own and I am now the proud owner of 4 platinum coils. (Not my first choice where to put platinum) lol

I just really want some answers to my complaints. Is this my new normal, will they go away with time???

I am not one to take medicine. I was diagnosed with Breast cancer in April 2015. I have since had a lumpectomy and opted out of any other form of treatment. So NO CHEMO/RADIATION/TAMOXIFEN. I follow a Raw Vegan diet to kill off any active cancer cells and it seems to be working. Had last scans last month and all looks great. Just trying to let you all know I did have some stress but think I am coping rather well. Just want to feel normal again or accept my new normal. I am open for any and all support, Suggestions or any insight anyone may have. Desperate for any info any of you may have. Thank you in advance.

Renee

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I probably am not the best one to answer since I am only 6 months out from my coil, but at IU Methodist Hospital in Indianapolis, IN, they told me it would be 12-18 months before I knew what the new "normal" was for me. I know it's frustrating. I can remember details about Kindergarten, but most times nothing about yesterday. My husband says we have the same conversations all the time. Hang in there! Leslie

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My mom was coiled on December, 28. It was partially coiled and they also used stent. She have headaches almost everyday.

It got worse when they tappered off her clonidine dosage (horrible medication, so many side effects), she developed the horrible rebound effect, it is so scary the hypertension peak, her cardio dr. changed the hypertension meds and it worked, thank God.

It was 13 days of headaches, lots of pain meds that didnā€™t help at all, in and out of ER, ice packs and two CTs until we figured it out that whenever we changed the dosage of clonidine or went cold turkey things would get really bad.

Now they start to wean off the pamelor and others medications dosage and again the daily headaches are coming back I think, but not so intense like last time, if she takes naratriptan 2.5mg + ibuprofen 600mg it knocks it off in 1 or 2 hours.

But what worries me is if itā€™s related to the Annie and not the meds but her complaints match with the withdraw symptoms. I wish I could help her more but there is no partner or anything specific to help figure it out.

The neuro doc says it is too soon for an angiogram and since CTs are normal there is no need to do it now, but he wants to do a new procedure to finally close it.

hi! wow!! i heard from a surgeon to drink one cup early in the day, i do that and it seems to help, tc

i also heard one c coffee but early in day by a surgeon in Austrlia, tc

Yeah, she reduced her caffeine intake these days. Maybe there is a relation.

Also there is another med that helps a lot, it is called Maxalt, her dosage is 10mg, but you need to be careful If you are taking Propranolol, the interaction is dangerous, it stops or reduces her headaches greatly.

Hi Gerry, Iā€™m post SAH 2011 and have suffered from daily headaches since, interesting that you find eating helps as I do also!!!

This conversation, although awhile ago has been like a godsend to me. Yesterday I was 5 weeks from my pipeline procedure to correct 2 aneurysms. It was also the first day that I really felt ā€œnormalā€ again. Constant headache for almost 4 weeks. And yes, drs think Iā€™m an addict! Really!!! Got my head and neck adjusted 4 weeks and 2 days post procedure. Dr was too scared to adjust upper neck until then. OMGā€¦ it was painful but my gosh the relief was AMAZING!! So yes I still get headaches from inside the brain and tightness on the scalp, which is weird. My short term memory sucks and I still donā€™t have a sense of taste butā€¦ for the most part my headaches are manageable. My opinion about this subject is doctors- denial does not make the pain go away. Help us out here!! Oh and by the way I have not taken anything stronger than Tylenol in 11 days and I have zero cravings to take narcotics. Yes we have a major drug problem but we also have people in real pain!! So many people with the same experience says a lot. The added stress of trying to manage the pain without help from the medical community only causes more pain!! Thank goodness for this site! Thank goodness for all of you sharing your stories. Thank you my friends

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God blessed us all on this site, we are still here and hopefully enjoying our lives to the best of our abilities, even with daily challenges.

I started a discussion on headaches a few years ago on here, I just had my 6 year anniversary post annie. I have 9 coils and have had a headache everyday since my rupture. My neurosurgeons assistant FINALLY admitted that headaches are one of the most common complaints from coiling. I have seen 3 other neurosurgeons since my rupture and each of them told me the headaches are not from the annie since there are no nerves there any longer, however as my surgeonā€™s assistant explained to me last week even though the nerves are no longer sensitive at the site of rupture, the surrounding areas are sensitive. So, that being said if the coils are touching other areas of the brain its very common for us to suffer from headaches.

I would also like to stress the importance of follow-up angiograms. I had my 3rd one last week, the one prior was 3 1/2 years ago. I have had these on time as my surgeon suggested. They found an artery in my neck that was blocked 80%, there was no problems showing 3 1/2 years ago so this has occurred in that length of time. He made it very clear I need to have a stent put in within the next 2 months, as soon as my insurance approves the procedure I will get it taken care of. If anyone has put off their follow-upā€™s please keep my story in mind, it could save your life.

We are all survivors!

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Hi, Im sorry to hear that. Has your pain subsided? Iā€™m a year post op and I only have these awful headaches and shooting pains on my surgery side. Itā€™s terrible and I hear the same exact thing as you. They arenā€™t offering any kind of help either. Iā€™m just suffering.

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Danneka1 ~
So sorry to hear your suffering, itā€™s a daily issue for me even after 6 1/2 years. I usually take a fioricet around noon when the pain gets bad. For the most part I can take care of chores in the morning but by noon I have to take something & usually lay down for about an hour, sometimes this helps, if Iā€™m still in pain at dinner time I will take a 1/2 Norco, sometimes I have to take a whole but usually 1/2 is enough to make the pain tolerable. Did you have coiling or clipping? Have you followed up with your Neuro? My Neuro is pretty much just a surgeon so I went to 3 different Neuroā€™s & they all told me I couldnā€™t be in pain due to the annie because there are no nerves there, but my surgeonā€™s assistant finally told me headaches are one of the side effects from coiling. I even went to a pain management Dr. but after seeing him 3 different times & him giving me injections in neck/upper shoulder area to see if it would help I felt he wasnā€™t doing me any good, the last procedure was a occipital nerve block & it actually made them worse I was done being poked with needles.
I sincerely hope you find something that works for you. Just know youā€™re not in this alone, we all have something weā€™re having to live with. I hope you have a good support group, my husband & family have been wonderful, so I feel blessed.
Hang in there but donā€™t give up on trying to find something that works for you. And please do your follow-ups with your Neuro.

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Thank you, Ginger, ever so much for starting this thread!!! My rupture was almost 7 years ago. Iā€™m still coping with damage on multiple levels; migraines, memory, processing, emotional and these really weird debilitating episodes with weirder spells that I have yet to find a real answer to. Been to 4 neurologists, and several other MDs. The apathy of the medical community is so discounting and discouraging. I understand their need to remain emotionally detached, but a lot of what Iā€™ve seen is outright cold and unfeeling. So, I walk away feeling like Iā€™m just damaged goods that should really do mankind a favor and off myself. Morbid, I know, but itā€™s how they make me feel. I want to scream at them, "Iā€™m not making this up!! Iā€™m not doing this for attention, you morons!!! It saddens me to see so many others in this thread have been met with the same apathy, but at least I now know, itā€™s not just me.
Wanted to mention the last bad headache I had: I put one of those muscle cling pads with the menthol on my forehead and one on my neck. Fell asleep and when I woke up, the headache was gone. Felt like crap the rest of the day, but no headache. Itā€™s the only time Iā€™ve tried that, so I donā€™t know if it will work everytime, but wanted to throw that out there for everyone anyways.
Thanks again, Ginger! I hope you are finding some relief.

I want to add something here. Let me apologize first for ranting, but the more I think about it the angrier I get. Iā€™d just like to know what the over-educated healthcare people are thinking. Are they thinking I just woke up thinking, ā€œIā€™m really bored. I think Iā€™ll go blow $20 on an office call. Maybe Iā€™ll get lucky and my doctor will order a bunch of tests that will run up a few thousand dollars in deductibles and co-pays that I CANā€™T afford. All to tell me they found nothing of significance. And then, maybe my doctor will prescribe some dangerous drug that makes me even more miserable and less functional than I already am! Sounds like a plan!ā€ Is this what they think? Iā€™m just a brain damaged working class chump who canā€™t even work anymore, so what do I know? I get more empathy and better service from cashiers and restaurant servers. Again, I apologize, but I just needed to get that off my chest.

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Lee ~
I totally understand your frustration, I feel the same way from time to time. I try really hard to not think about it (the headache pain) too much it makes it worse for me. I try to stay busy to the best of my ability but when I canā€™t I just try & relax or sleep. I had my follow up appointment yesterday with my neurosurgeon from the stent he put in the end of January. My husband brought up my headaches to him & for the 1st time ever he acknowledged that a lot of patients complain of headaches from the coiling, he went as far as saying itā€™s the #1 complaint patients have to deal with. I felt so relieved that finally a professional recognizes this. He suggested I go to a headache specialist & he would set up the appointment after I check with my insurance to see if they will cover the visit. Iā€™ll let you know if I get any relief after seeing him. My neuro said it could take a couple of months to get into him.
I hope you find something that works for you, Iā€™ve had a few that have suggested botox but Iā€™ve been reluctant to try it. It works great for some but there are side effects that have kept me from trying it. Has anyone suggested this to you?
I wish all of us that have survived relief from our day to day struggles. Itā€™s very hard to deal with pain day after day after day. It really wears on us. I get pleasure in the little things like walking my dogs (usually just around the block), their unconditional love, working in my yard & watching things grow, I also have lots of orchids that give me a lot of pleasure. My husband has been so supportive through all of this Iā€™m very fortunate. We all have to find something that gives us a distraction from what we are living with that gives us some pleasure.
I wish you all the best in finding something that works for you, feel free to vent your frustrations anytime, weā€™re all in this together.

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Thank you Ginger! What you do is pretty much what I do. I have a beagle mix rescue who is my physical therapist. We hike a lot. I do a lot of yard work and DIY projects. I keep busy so I donā€™t think about it too much. I canā€™t let myself slide down the slippery slope of depression. It helps a lot to know there are people out there who know what itā€™s like. Keep us posted with your progress at the headache specialist.

Hi Lee, I share a similar story but in my case, it is dizziness/vertigo instead of headaches. I had a brainstem aneurysm (vertebral-PICA) rupture almost 4 years ago. I have seen multiple specialists (Ear NoseThroat, Eye, Eye-Neuro, Neurologist, Headache Neurologist, Neuro-Surgeon). In their swim lanes, they had a piece of information. But, persistence and some research on my own led to a Professor of Neurology who pieced a lot of information and led me to the most comprehensive diagnosis and a treatment 3.5 years later. It turns out that I had a minor stroke (infarct) in the brainstem. What has helpful was the Neuro-Surgeon notes which will tell the exact location, thickness of bleed - SAH, and the MRI. In this way, the physician will know the exact territory which was affected. Together with the my eye examination by Neuro- Eye which showed abnormal eye movements and position and the hearing loss in right ear, and minor infarct in the brainstem (MRI), he pulled all the information together. I still have vertigo but at least, I know the exact cause. I close one eye or wear an eye patch which completely stops the vertigo. Where did you have your aneurysm rupture? I hope that you will get the diagnosis and treatment which you deserve.

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Thanks for that, 2Fight! My rupture was on my left vertebral. The other two were on each carotid. They coiled the rupture and one of the other but had to stop because of vasospasm. When they went in to do the third I had a stroke. So my biggest problem is I donā€™t have much support from family and driving to the ā€œexpertsā€ is an issue, even if I could find one that would be willing to take an interest. My ability to process is challenged, so Iā€™m a danger to myself and others in urban traffic. I live in a rural area in the Ohio River Valley. More troubling than the headaches is the episodes with spells. I posted an in-depth description in the ā€œQuestionsā€ category. I have been doing research and have started taking supplements. I asked my GP first given the meds Iā€™m on. I think they might be helping. These things take time. If you get the chance to read my other post Iā€™d like to hear your thoughts. Thanks again, Lee

Hi Ginger!
I know this responce ia a bit late, was just scrolling through stories that resonated. I had a violent ruptured annie on my brain stem at the base of my skull. They coiled it and I suffered from dehibilitating vaso-spasems in the hospital, in the ICU and they were giving me fentanyl in the hospital. When they released me home ( straight from the ICU, 2 weeks later :thinking::face_with_raised_eyebrow:) I came home and still wake up with headaches every morning. On my follow up angio-gram (they coiled it through my femeral artery originally) my neurosurgeon (Dr. Malek, I highly reccomend him, I live in south florida) he said that I will probably always get these headaches and it is due to the amount of blood that was on my brain when it ruptured. Atleast hw acknowledged it and told the truth. It doesnā€™t help with making them any better but at least I know this is something I will have to learn to live with. After my neuro-phyc evaluation, they reccomend I see a phyciatrist monthly to control my meds and a phycologist once a week to help get out as and learn how to deal with all these new issues, anxiety and irritability as these have all been really exacerbated.
My rupture was on 9/11/17 (ironic) so still less than a year in recovery but every day is different, pain wise and emotionally.
Unfortunately the doctors dont truly understand what we go through after the ā€œmiracleā€ of surviving this. It does not feel that way. Very grateful they saved my life as I dont want or wish to be dead, however since their really arent many survivors, there really arent alot of clear answers to our questions and concerns. Iā€™m learning it all takes time. Very hard for an impatient person, like myself.
I have a 2 1/2 yr old son and the mornings are very difficult. Sometimes the whole day is really difficult.
Sorry for the rant. But thank you so much for sharing. Itā€™s nice to know we are not alone, even when we feel this way.

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