Head pain for 8 months and counting. Any help/suggestions appreciated

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Hi all, hope everyone is doing well.

I have a somewhat off topic question, one day in September 2020 my head suddenly started pounding out of nowhere no amount of Tylenol/Advil would help in the least. After almost two months, dr/mri appointments were hard to get, my neurologist said it was due to an aneurysm and to get surgery immediately. I had a flow diverter stent put in for an un-ruptured 15mm ICA with daughter in the beginning of November 2020 and to give it a “few weeks to a month” for my head to feel better. Here we are 6 months after the stent procedure and my head is still constantly pounding/throbbing 24/7. So my question is, has anyone here experienced anything like this and it been diagnosed as something not at all related to the aneurysm itself or the stenting procedure?

I have seen two other neurologists and an ENT specialist since the stent procedure and all of them tell me everything looks ok and just want to throw medication at it to see if that helps. None of these drs have done any further testing either, they are only looking at all my previous MRI/MRA results.

I just past the 8 month mark of this and just don’t know where to go from here medically. Countless hours searching online hasn’t been of any help at all. Anyone that has experienced something like this and has any input would be greatly appreciated.

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Hey Joe,
Firstly, I do not think there is anything off topic in your question, in fact quite the opposite. Unfortunately, you are not the only person experiencing this ‘All Fixed’ approach. In other words ‘Me Too’.

My first neurosurgery was back in Feb of 1996 and I recovered OK, not great, but OK. I then required a 2nd surgery and was told it would settle, only it didn’t. I was told my continuing pain was everything but related to the surgery. First it was dental, so I had all of my top teeth removed, it was not dental. Then I was told it was optical, so I had my eyes tested and I now wear specs, but the headaches continued. Then I was told it was migraine related and was trialled on all sorts of meds, but none of them worked and the side effects were just nasty. I was then told it was stress related. Past stress, present stress, future stress, no wonder I was stressed with all of these differing diagnosis. It was explained that I was storing these stressors in the muscles in my neck shoulders and face and I was treated with multiple treatments of Botox. Sure, I was wrinkle free but my pain continued.
Then they decided to operate again… …and again… and again. Each was to ‘fix’ an issue and although the scans showed that fix had worked the flow on effects have been never ending.

When it comes to neurosurgery 8months is still fairly early on in your recovery. Sure, the bone and scalp have healed, but the brain itself can take years to recover. My last surgery was back in 2013 and still today I battle. According to the medicos the scans look fine, but ohh, this is far, FAR from fine. Some days I’m tempted to dig my eyes out with a teaspoon as the pain behind them is just beyond measure. Some dr’s have come out with ‘You just have a low tolerance to pain…’ but honestly they have no clue just how bad BAD can be. I’m often saying ‘When you hurt your leg it affects your leg, you may have a limp. 6-8weeks later it’s all healed. But when it’s your brain it can affect EVERYTHING and 6-8weeks later it can still affect EVERYTHING’.

Some patients can go through all of this and be relatively unaffected, but for some the after effects can be life changing The medicos often portray that those ‘relatively unaffected’ as being the norm, but that is not always the case.

My recommendation to you is that you exhaust every avenue open to you. You never know, someone may just have that ‘Key’ that you are hunting for. That treatment you think ‘That’ll never work’ and write off could be your ‘key’, so try them all.

Document your journey, keep copies of EVERYTHING. All of your appointments, all of the drs and their specialisation. If a dr sends you for a scan, get a copy. If the dr writes a report, get a copy. If the dr sends you for a blood test, get a copy. I’ve seen more dr’s, specialist and wizards than I can count on my fingers (and toes) and each one has wanted their own tests and made their own diagnosis. Having it all documented when the say 'Have you tried ‘X’?" you can say ‘yes, and here’s the report’. This can help reduce the instances of doubling up on tests/scans/appointments.

And finally. Acceptance. We all hope wish and pray that there is an answer out there but on the off chance that this is not the case then acceptance of the reality of it all is a must. Pain is a weird beast and head pain can be the weirdest. Some medicos can make out they know all about it. They don’t. Some can get a little frustrated if/when we do not respond to their treatments, but that’s minimal in comparison to our own frustration, none of us are here by choice, but at some point we have to learn to adjust and accept the reality of it all.

Merl from the Modsupport Team

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Good Morning @Jswin! Ahhh the headaches, I remember them quite well. I couldn’t bend as it made them worse, in fact breathing sometimes seemed to make them worse. The first Neurologist was quite overwhelming for me, everything in his office looked like a 1970’s disco, ball and everything! The second Neurologist tried me on a lot of drugs for epilepsy. One of them had me not liking myself and our new pup wouldn’t come near me. The rules for me from my Neurosurgeon post rupture was to go to ER if I experienced headache, neck pain/stiffness, and nausea/vomiting. Her other rules were to hydrate, eat protein, hydrate, rest and hydrate. And one of the more important rules we often don’t speak about, is straining when you have a bowel movement, a big no-no as the pressure created in your head can actually cause coils to move about. I don’t know about stents, just had my first one put in back in Dec but the three previous coilings have instilled this practice in me. To avoid straining, you have to watch your diet, hydrate and eat fiber.

Besides keeping all the documentation so you don’t have to have the tests repeated, keep a list of all the meds you have taken. Dr. Yapundich, my second Neurologist explained to me that I shouldn’t take NSAIDs more than three times a week as they can cause secondary headaches. I also don’t take Tylenol; had an issue with it and my liver about 35 years ago, so it scares me to take it.

Most folks on here have experienced migraines and the docs will give the different types of migraines a name. There are so many I won’t try to type them all. But I do know for me, they were labeled “non-specific”. Every doctor I have seen has asked me to keep a headache diary. This is so they and you can determine the triggers for the headaches. For me, bright lights and loud noises, especially high pitched ones can be excruciating. Sunglasses, hat and ear plugs help a great deal. We keep the living room fairly dark in the evening. I went on a hunt to find the ear plugs that worked best for me and found the ISOTunes Pro to be the type, in fact I just received the updated PRO 2’s. They were less expensive at Lowe’s Hardware. I had even considered getting a custom fitted set until I found them.

Remember this isn’t a broken bone that can heal in six months or less. It takes time, a lot of time. I know with ruptures, one of the causes is the blood getting into our CSF. I don’t know if blood entered into yours. I hope other members who have had procedures without rupture will chime in. They have a great deal of experience here.

All the best,
Moltroub

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Hi Merl,
Thanks for all your input. I especially need to take your advice on keeping better records of all the appointments, tests, etc from dr to dr. Organized paperwork/records has never been a strong suit of mine.
I completely understand that 6 months after the procedure is very short and I may be expecting too much to soon. However, my head started hurting two months prior to the procedure and has never stopped. The procedure itself was minimally invasive. The surpass flow diverter stent is deployed from inside the artery, the surgeon went in through a 1-2mm incision in the femoral artery in the groin and drives it to the deployment site. So I’m not having to recover from any major open skull surgery. Per the surgeon, he said the aneurysm would very quickly diminish and and any pain issues from it would have also subsided by now as well. Guess that’s why I’m looking/hoping it may have another cause. I just recently turned 40 and have never had any prior issues with headaches or migraines of any kind.
I greatly appreciate all your advice and will continue to hunt the cause down and hopefully find an answer in the near future.

Much thanks,
Joe

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@Jswin when do you get your follow up angiogram? I had a stent put in this last Dec and my follow up is in June. We just spoke with the NP yesterday and she’s going to request the early morning slot, my favorite.

All the best
Moltroub

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Hey Mol, funny you should ask. My angio was scheduled for next Thursday and just my luck I now have a touch of the Rona so will have to postpone it for a few weeks til get the all clear. I was actually looking forward to getting it and hopefully knowing everything looks ok. Guess that’s just my luck I’ve dodged it for well over a year and now it pops up n gets me.

If my head hurting was from time to time I’d chalk it up to part of the ‘process’, my concern is that it literally hurts from the time I open my eyes in the morning until I fall asleep at night every single day. And that it has felt this way for about two months prior to my procedure. Knows it’s grasping at straws here hoping someone may have an idea but figured it was worth reaching out and seeing.

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I am sorry that you are dealing with this @Jswin. Headaches are terrible. I will be very interested to hear the results of your follow up angiogram. I learn so much in this forum about new treatments and such. Maybe you can help me understand something. I had a flow diverter implanted as well; however, my aneurysm ruptured. So my understanding of the diverter is that it moves the blood around the aneurysm so that it won’t continue to leak out the hole. In your case, the diverter is preventing the aneurysm from increasing in size. But what are they doing for the then existing aneurysm? I would have thought they would have to coil it or otherwise deal with it. Is it possible that it has since ruptured and that is why you are having the headaches?

As far as what you can do, have you tried meditation?

Best of luck and God bless.
Brian

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@Jswin I don’t know what’s causing headaches that started two months prior to your procedure. You are a conundrum aren’t you! Don’t take this the wrong way, but it’s kinda nice to see someone else who baffles the docs though. My Neuro NP told us on Thursday, they just throw the books away when it comes to me lol

First thing that comes to mind is one of the migraine types. Most of us don’t get a thunderclap headache unless we’ve ruptured. Some get headaches due to sentinel bleeds, a slow release of blood indicative of about to rupture as I understand them. I think just about all of us our told that aneurysms won’t cause headaches unless they’re large enough to press on a nerve.

I know my second Neurologist believed Americans don’t get enough magnesium in their diet and he prescribed me and my BH who suffers from the “non-specific” type of migraines, Magnesium Oxide at such a strength we had to get it from the pharmacist as none keep that on the counters. It is an OTC, but we had to give the pharmacist the doctor’s name before they’d give it to us. You may want to talk to yours about it. I used to have pretty bad headaches but they were caused by stress, not enough sleep, improper diet and allergies, was my guess. I never went to see a doctor for them. Now, when I start to get a headache, I hydrate, hydrate, hydrate; eat protein, hydrate some more, rest and hydrate some more. It helps tremendously.

I hope they figure this out for you. Hang in there!
Moltroub

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Hi Brian, I asked the same question before the procedure. According to my surgeon the flow into the existing aneurysm is essentially cut-off once the diverter was put in place and it will simply shrink up and no longer pose any sort of danger. He is regarded as one of the absolute best neurosurgeons in south Florida as well from everyone I’ve spoke to so I feel pretty confident in his assessment. His name is Ali Malek in West Palm Beach. Have my follow up angiogram with him in a few weeks. After get the all clear from him I will continue trying to find another specialist of some kind to hopefully determine why my head is still hurting

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Hi @Jswin!

I am so sorry you are having headaches. They can be so debilitating and frustrating. Question? Are you on Plavix? It is not common, but headache is listed in the PI as a reported side effect. Unfortunately, those of us on DAPT cannot take anything but Tylenol. I know you mentioned ENT and neurology…and that you may not want to take medication for your headaches. I have a few friends on a class of drugs called the Triptans that have worked very well for them. Only you can make the decision whether or not you are open to treatment. I am just so sorry you are in pain!

Regarding flow diversion, I have attached a link to a review article on the mechanism of action. Here is the main takeaway:
“Upon flow diverter deployment, flow disruption and subsequent stable thrombus formation within the aneurysm are primary events that play a critical role in aneurysm occlusion. The innate flow-altering capability of flow diverters is a direct function of device porosity, defined as the fraction of metal-free area per total stent surface area coverage, and pore density, the number of pores per unit area along the device-neck interface. Device porosity and pore density both directly determine resistance to flow through pores into the aneurysmal sac. Devices with lower porosity result in higher resistances to flow into the aneurysmal sac, thereby theoretically stagnating flow into the aneurysm and resulting in intra-aneurysmal stasis.”

Feel better!
Kim

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@Jswin, I recommend you stop taking acetaminophen. For me, it causes the what they sometimes call rebound headaches. It can also cause weird reactions for some people when mixed with other medications. It could part of your headache problem.

I recommend you take prescription medicines that will calm you and relieve pain. You are obviously suffering too much and that is really bad for a person trying to heal.

You might also try to some guided imagery meditation. There are lots of kinds of meditation and they can all help you. You will eventually be able to take fewer meds, maybe even none at all.

My experience with neurosurgeons is - they tend to be like mechanical technicians and not so much like healers. I recommend you find a good neurologist who will treat your pain and listen to your concerns.

Good luck - we really do understand you here.

Mary

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First let me say that you’re going to hear the same thing from most doctors “it’s not related!”
Second, let me assure you that it IS! There are way too many of us that have the exact same problem for it not to be.
25 years for me. I truly hate it when doctors who have never had a brain aneurysm nor any surgery for one try to tell you what your not feeling from it! Seriously! I also have abdominal aortic aneurysms and run into the same problem with doctors telling me what I don’t feel :woman_facepalming:t3:

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JSWIN,
Head pain, when they did my crany, the doctor told me that you will have the worst headache of your life. He was dead right my head was killing me.
I went to him for almost 2 years before it got better, then the octave nerve had to be removed. So, the headache took another 1.5 years before I could wake up in the morning with out a headache.
The main thing that I did was lay down - and rest the brain as much as I could this did help a lot.
It’s going to take time for your brain to recover and the headaches to go away. It might be 1 year or longer. So, take the rest medicine and try to lay down as much as you can.
I do remember that the doctor brought me back to the hospital to rest my brain, I was there 21 days no TV, no phone, no computer. It made no difference to I me because when the surgery was done, I could not read or write, what a scare situation. The was the best 21 days that I needed to help my recovery.
To this day I still get killer headache. I am now 13 years later.
The other problem that I have is the dreaded cancer, Leukemia and after going through chemotherapy I had a killer headache every day and I am still getting these killer headache every day, and no one can tell me how to get rid of them.
Ray

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All I can say is, I feel every ounce of your frustration with doctors! My head pounded for months too, but not every day and not all day. I had coils and PED stents for a large 23mm annie in the vertebral/basilar area in March 2012, and they telescoped more stents inside in December the same year. I had recurring throbbing headaches for years. In 2018 I stopped the baby aspirin I was supposed to take for life (with my neurosurgeons blessing), and lo and behold the headaches all but ended. I get little ones occasionally now and don’t even bother with ibuprofen as I’m tired of being medicated all the time (and OTC meds only took the edge off anyways). I don’t tolerate Hydrocodone or the like so I can’t take anything else. For a surgery so non-invasive, I never dreamed it’d be so much hassle to recover from! Mine was just through the femoral artery too (interventional radiology?), no skull removals. My head hurt for a couple weeks prior to diagnosis, then stopped, then hurt like the dickens during the angiogram where they used balloon occlusion to see if I could live without the affected artery, and then the headaches came after surgery. They aren’t migraines, they are different, and I know the difference because I’ve had both and know others with migraines. My annie headaches are just throbbing/pulsing pains right where the annie is located (back left of my head, behind my ear and near my neck), and sitting still relieves them to some degree, but I’m left with exhaustion and brain fog for a day or so. They used to be quite debilitating, but now they are manageable and I hardly notice them, but that’s also because I’m so used to debilitating pain, that anything less I’m happy to power through. My neurosurgeon told me early on that the headaches weren’t his concern (I was cured in terms of the annie) and to find a good neurologist. Unfortunately we don’t have any nearby so I’ve been going it alone. My side of the state has quacks for doctors of all kinds. It’s hard to travel four hours to see anyone else, so I don’t. My only advice? Keep trying to find a doc who can help. I’m sorry you’re sidetracked with COVID, and have to wait on your testing. I feel that anxiety too. My only solace is to pray, and know that someday I’ll be someplace a heck of a lot nicer than here, and I’ll be pain free. In the meantime, keep us posted and feel free to vent anytime. It helps us all to vent if we can’t get any answers - and we can see we aren’t alone in our sufferings.

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Back in October 2012 I started getting pressure headaches and vomiting for about 3-4 days, then stopped for about a week while I was weak and trying to recover my energy. Then 3-4 days of headaches and vomiting. This went on for months. Went to GP, eye doctor, gastrologist and finally a neurologist. I tried about 5 different types of migraine medications that did nothing for the headaches or vomiting, so he ordered an MRI.

A 7 mm aneurism was found and I went to a neurosurgeon for consultation. He said the aneurism had not ruptured and did not believe that was causing the headaches and vomiting. I was so miserable and could not live a normal life so I agreed to try coiling in March 2013. The surgeon could not coil the aneurism because it is an odd shape. So he did surgery to do a clamp, but could not clamp because of the shape, so he said he wrapped it to secure the exterior. Directly after the surgery I did not have the headaches and vomiting, but after about 7 months (end of 2013) the headaches and vomiting started again. Neurosurgeon said not his problem. Another MRI shows the aneurysm was still there, but not bleeding, so not caused by aneurysm.

Another round of a few different GP’s when one put me on Amitriptyline (35 mg at bedtime). It took a few months, but the headaches and vomiting stopped. When I researched, I see that the medication is used for depression and does make me a little tired. It also does NOT work when taken at the same time as high cholesterol medication that I was told to take a night at the same time as amitriptyline. The headaches and vomiting came back. GP switched to a different high cholesterol medication that I take in the morning and after a few months, the headaches and vomiting have stopped.

I am still aware that I have an aneurysm and watch my activity and never miss my medication so that I have been able to live a normal life without worry that I am going to get the headaches or start vomiting. I just thought I would mention my background and headaches and what has worked for me that you might want to discuss with your doctor. Good Luck!

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@Mary2014 I am so sorry that acetaminophen was causing your rebound headaches. I do take it when I need, as I am on Plavix and aspirin and cannot take ibuprofen or NSAIDS. Each of us is unique and perhaps, @Jswin is having headaches from another cause…we each need to make our own decisions when it comes to drugs etc, and as you mention “calm you and relieve pain,” the first thing that comes to my mind are opioids. This makes me personally, very nervous. I do think that each of us can work with our physicians to try to find an appropriate treatment course; with or without drugs, and that should be our own personal decision.

Best wishes,
Kim

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I agree with you that we all are unique and need to make our own decisions. That is why I shared my own experience and advice that maybe nobody else would give. Calming and relieving pain support healing. Acetaminophen can be dangerous to some people and in some combinations. It and aspirin have both been treated like harmless miracle drugs for decades. I come here to be informed and to share what I have learned.

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@Mary2014 and we do appreciate your sharing! What we cannot do as we are not doctors is to tell someone to stop a course of medication that their physician has told them to do. Even if we are Doctors, we are not privy to the person’s medical chart. I am old enough to remember when the push for aspirin stopped and they centered on acetaminophen here in the States btw. Even so, medication prescribed by a doctor is something we cannot tell a member to stop. Perhaps a better way is to suggest to another member is to have blood work done to ensure they are not at a toxic level. For example, a liver panel if on acetaminophen for a long duration.

Hope that makes sense,
Moltroub

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Hello all. The best thing about sharing this is I can go back here anytime and find so much information. And new ideas or forgotten ones. Thank you to all for helping out

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I ruptured February 2019. My headache is my constant companion and reminder. My neurosurgeon told my DH I could have a headache for a day, a week, a month, a year or it may never go away. I am hoping to wake up one morning and find out it gave up. They gave me a barbiturate, caffeine and acetaminophen combo but my PCP was having none of that. Sadly he had no alternative so… I remembered my grandmother used to say her grandmother would give her coffee for “the headache”. The combo barbiturate had caffeine in it so I thought there might be something to it. If it gets bad enough or it wakes me at night I fix a cup of coffee. The first time I did that at 2 in the morning, I told myself that caffeine is going to keep me up all night. But by 3 I was ready to go back to bed and the headache was nagging at me but not as bad as it was when I woke up. It works for me. I have read some doctors are recommending Botox but I don’t know of anybody who has tried it.