Migraine aura returns really worried

Support
1

Hi,

I had endovasuler coiling in 2013 for an aneurysm on what I thought was my right carotid artery, only to learn much later it was actually on my right prosterior communicating artery.
I had visual problems on waking in recovery. This was just dismissed. I was discharged 3 days later & re admitted on day 4 with a terrible, severe headache & severe visual disturbances.
When the headache eased,I had a strange sensation deep inside my brain on the right side. Then,my left arm shot into the air & I had no control over my left leg.
It was the weekend so only juniors doctors to treat me. They thought maybe a seizure or a Tia but my CT was normal.
I returned home after 2 day’s & the neuro radiologist who perfomed my coiling rang me. He said to drink lot’s of water( which I did anyway) as tiny clot’s can break off causing odd symptoms but it should settle.
I then paid to see a proffesor of neurology as I still had these odd ongoing symptoms. At times my left leg would forget how to work to come downstairs. He told me I had had mild vasospasm & may never have it again & that I was having migraine auras without the migraine headache.
I was later due a follow up with the neurosurgeon & he disagreed with everything, apart from the migraine auras.
I suffered severe migraine auras for two years, then, after a colourful aura, they stopped. I still had daily visual disturbances but nothing like these awful auras that lasted an hour.
I have had really strange things occur in my head ever since the coiling, with no answers ever given.
I have felt like my head is being crushed on either side, with really severe pain & so frightening. At times as if a skewer was being pushed into my brow area & a feeling as if a part of my brain was being clamped.
I have felt water dripping inside my head, again on the right side.
I sometimes get a feeling like an elastic band is being pinged in my head! Other times sharp pains which will stop me in my tracks.
I no longer get scanned unless I pay for an MRA myself & with Covid this is now not possible.
Out of the blue on Christmas eve morning, I could see my vision fading & then a half circle of shimmer in the outer corner of my left eye. This was followed by huge silver shimmers of ragged broken glass. This has got me worried & I fear something could be wrong after not having an aura attack for so long.
I had an ischemic stroke 16 years ago, after receiving a flu jab. I lost my sight totally for 4 hours but I was not told for 7 years that I had suffered a stroke. I was fobbed off that it was a migraine without a headache!!
I am thinking of taking 75 mg of asprin until I can get an appt with a neurolgist in the new year. I read online that this helps with preventing migraine aura but as I do not have a stent holding in my coils this was never prescribed.
I have low B/P, low cholestrol & don’t smoke.
Has anyone here had migraine auras return after many years? I can’t understand why this has happened. They frighten me.
I am sorry for the long post. I am just so worried why auras would suddenly return & keep thinking it’s linked to my aneurysm as the night before the aura, I had a similar sensation in my head, again on the right side, to that what occured days after my coiling.

Thank you so much

1 Like
2

Hey Eve,
This is a place to come and ask questions, so please don’t be apologising for the length of your post, heck, some of my posts can almost be like a thesis :smile:

From my experience, I have some weird symptoms post neurosurgery from auras to numbness/tingles to all sorts of odd pains. Some are minimal, some are alarming and some are just OMG. In the OMG stage I have presented to A&E, had scans and been sent home. I now look for a progression of symptoms. A headache for me, that’s normal. (BUT If I have a sudden icepick headache I MUST act fast) If that headache progresses to my vision, that’s a bit more concerning. If that progresses to limb numbness (arm or leg) that’s even more concerning. But then if it progresses to nausea I need to act and get to a hospital. Now those are MY signs of progression and over the years I have learnt which signs are ‘normal’ (as if any of it is normal) and which signs are an ‘ACT NOW’ sign. If you are unsure, if you are concerned, get to a hospital. What’s the worst they can say? “It’s nothing to worry about…”

Ahhh, yes, the old ‘Ohh it’s just migraines’ line. Sorry, does that sound cynical? Maybe because it is cynical. The ‘Ohh it’s just migraines’ line has been given to me numerous times. I’ve tried all sorts of ‘migraine’ medications and treatments. Some medicos are of the opinion migraines are caused by an issue with electrical signalling so I was trialled on all sorts of epilepsy meds. Some are of the opinion its a blood flow issues so I was trialled on all sorts of heart meds. Some say they are caused by muscle tension in the neck, shoulder and back so I trialled Botox, acupuncture, Bowen therapy, hydrotherapy, therapeutic massage and chiropractic therapy etc. Then came the psych meds, ohh yuck, like being in a constant fog but with a fog and a headache, just yuck. But none of them were my ‘key’. For some people they can find their ‘key’ via those treatments, many do, I just wish I was one of them.

If a Dr, a medico or anybody suggested an option, I’ve given it a go, and I have all of the documentation to prove it. So when they say 'Have you tried ‘X’?" I can show the results because I have have found that this truly can be a big merry-go-round sometimes, repeating scans, repeating tests etc. I have tried to explain to them what my pain can be like and some of them look at me like I have a 3rd eye in the middle of my forehead or something. One neuro told me ‘Well, that can’t be happening…’ ohh, so now I’m imagining it all. He went on to tell me that the brain itself has no pain nerves, it processes pain from other regions of the body, but it can’t feel pain itself. My head feels like it’s about ready to explode and pop my eyeballs from my skull, certainly feels like my brain to me!!! He told me the meninges (or the covering of the brain) does have pain receptors and any surgery can irritate the meninges.

In my neuro journey (20+yrs) I think the closest I came to some sort of answer for my ongoing symptoms came from an ophthalmologist “…Well, what do you expect… …you’ve had brain surgery…”. I thought it a bit blunt at the time, but in hindsight, it’s as close as I’ve gotten. In the processes of surgery the super fine neurocircuitries have been disturbed and everybody’s circuits are wired differently. I often explain it as 2 people can have exactly the same issue requiring exactly the same surgery but have vastly differing outcomes. I’ve required 6 neurosurgeries and each one has had a compounding effect on my symptoms.

Nobody, and I mean NOBODY knows your pain or knows your symptoms. Short of ‘a headache’ I am yet to hear of anybody with exactly the same symptoms. I don’t get headaches, Calling them headaches just isn’t adequate. I get bolts of agony sent from the gates of hell. I had one lady say to me ‘Ohh headches…I get those’ she said, and I was so tempted to tell her ‘Not like these you don’t…’ but honestly others have no clue just how bad BAD can be.

There is some evidence that aspirin can help, but for people like us with underlaying conditions, it is highly recommended it be done under medical supervision. These medications can thin the blood to dangerous levels and depending on the circumstances can lead to further bleeds and other issues. Some medications can also have some pretty wicked side effects when combined as they interact with each other. Doctor’s and pharmacists are trained in these drug interactions and due to your history a medical professional really does need to be consulted.

I completely understand the fear but I think the old saying of ‘be aware, not alarmed’ is a good one. But again, only you can tell if it’s an ‘ACT NOW’ situation.

Merl from the Modsupport Team

2 Likes
3

Hi Merl,

Yes, I have been told countless times that the brain has no nerve endings too. That this is why they can perform brain surgery with the patient awake for some surgeries.
Then it’s maybe anxiety related! I wouldn’t be paying to see them if I wasn’t concerned about my symptoms. I still get no answers from them, but I know I had nothing like this happen before my coiling so I know it’s all related.
It gets frightening sometimes, because if it is the nerve endings like they say causing all this, you would expect the symptoms to remain the same & not experience different pain or sensations.
I will hold off the asprin until I can get a phone consultation with a neuro as they are still not doing face to face appts.

Thank you so much
Eve

1 Like
4

Eve, I am glad to read that you’re going to wait to take any medicine without some type of medical supervision! While our brains may not feel pain when the doctors are in it, our brains have trillions of nerve receptors which allow us to process information our body sends to it. Here’s a simple description https://kidshealth.org/en/parents/brain-nervous-system.html

One of my neurologists explained that taking NSAIDs more than three times a week can cause secondary headaches. I had been on low dose aspirin for my heart and my Neurosurgeon stopped that as soon as I ruptured. She also stopped my heart med which eventually I found out why but not until I had a day and my brain literally felt like it was on fire. I stopped everything. A week later I started my allergy medicine again. Seems I really need those, but not the heart meds. Eventually I, like Merl, have gotten proof that I don’t need it.

I had vasospasms for 21 days in hospital when I ruptured and lots of weird sensations afterwards. It took a few years for headaches to go away and a couple more coilings. I just had my 4th procedure which was four more coils of various lengths and a stent. I wasn’t having any bad symptoms but strange ones and they found the neck to have opened up more than was safe for my activity level. Now I’m back to piercing headaches, especially if on a tablet or phone too much which can vary by the day. The first clue for me is my words start going and my stutter becomes unbearable. Bending has become a bit of a problem again as well.

The oddity is when I went in this last time, I had the perfunctory blood work and everything was in the extremely good range. Right after my procedure they took a blood panel and everything is off kilter either grossly high or low but none in the middle section of being good. Speaking of blood work, I have learned that different specialists want to see a different level on things. My Rheumatologist started me on Vit. D2 and felt my B12 was fine. Went and saw the Neurologist who felt the D2 was fine but the B too low. When I asked one of them why, that’s when I learned about the difference. So just an example of the importance of being followed by a physician. Oh and coiling 2 and 3 were changed to read something about treatment for vasospasms, though no ultrasound was used and I believe we were told because of the coils compacting. Another question added to the list for my follow up appointment in February.

While you’re waiting for your phone consult, try to determine your triggers. It could be light, sound, bending or a myriad of other things.

All the best,
Moltroub

1 Like
5

Hey Eve,
My symptoms fluctuate something terrible. I have tried to identify a pattern, I kept a ‘Pain Diary’ for 6mths. I would record time, symptoms, treatments/medications, diet, activity, weather etc. I even recorded moon cycles. There was no direct pattern. I’ve often explained it to others like this:

 In science there's a common theory of A+B=C, but with neurology that's way too 
 simple. For me it's more often a case of A+B-CxD/E√F... and each one is variable. 
 I simply never can tell

Trying to get a medico to agree that surgery maybe the cause of ongoing effects is near on impossible from my experience. In fact I had one tell me ‘Ohh it’s got nothing to do with what we did… …It must just be YOU…’ like I choose to be symptomatic. Another said ‘WHAT?? Do you want to sue me??..’ Which I have never had any intent of, I was looking for answers, not $$$$. And another told me ‘Ohh but you had symptoms before…’ Yea, I did… …but not like these.
I never did get a direct answer.

Merl from the Modsupport Team

6

Hi Moltroub,

Thank you so much for the link. A lot of good information.

I rang the neuro sec today & left a voicemal requesting a private zoom consultation with the neuro but probably won’t happen until mid January.

The sensations in my brain, no one could agree on after my coiling. At home, whenever the sensation occured, it would always affect my left side. Either my face would have a spasm or my left arm. I would forget how to use my left leg coming downstairs & then it all settled.

The right side of our brains control the left so it was obviously connected to the coiling.

This sensation is now back & after all this time is causing me to wonder all sorts.

The last MRA I had was in London & something was mentioned about the blood flow irregularity in the coiling area but I was unable to get to London, due to one thing & another so had a call with a neurologist to discuss the results.
The consultant then had the scan checked again, this time by a vascular surgeon & was told I did not need another scan, my aneurysm looked ok.

I was then prescribed anti epileptic meds to try as I also get these other odd happenings in my head (which I had a long while before the coiling) where it feels like a fast shake in my brain or like a spasm. No one has ever diagnosed them.
It is over in seconds. I always go over to the right whenever this happens, just like being pushed & my head really don’t feel right afterwards. I can’t drive because of it as there is no warning of when it will occur but the meds didn’t help & I had bad side effects.

I feel like a different person since the coiling & I am also having to have bladder investigations now & wonder if it is anything to do with all the contrast dye.

I have been told I am not to have anymore radiation. I have had …
2 brain CT angiograms.
7 brain CT scans.
Radiation during the coiling procedure.
Heart CT angiogram.
CT heart calcium scan
2 abdomen CT scans

I will let you know what the neuro says & thank you so much for your replies.

Eve x

1 Like
7

Hi Merl,

Yes, it’s like the Doctors/ consultants seem to think … you have had the procedure, all sorted! Why are you here!

I wouldn’t be wasting money to see them if I didn’t have issues/ concerns or paying for scans. I have been discharged from the NHS just over 2 years ago so not in the system anymore.

I really don’t think anyone should be totally discharged with coils in their brain.

Thank you so much. I will let you know what the consultant says.

Eve x

8

Ohh yea, for sure. I call it the ‘All fixed’ theory. “We operated, We fixed…” but my theory is that if this is ‘fixed’ then I’m another word starting with ‘F’. My neurosurgical journey started in '96 and has been a rollercoaster journey ever since. I’ve seen dr’s/professors and specialists of every colour and creed and exhausted every option open to me. Their opinions can vary massively. Now, in saying that, I did have a good 8-9yrs of ‘manageable’ symptoms. I still had headaches and other symptoms, but I could medicate and time manage fairly well around work and pain.

Then came '13, that was a mongrel year for me. I had 3 differing neurosurgeries that year and my recovery has been a L…O…N…G, S…L…O…W… P…R…O…C…E…S…S. I’m almost 8yrs on and I’m still on a see-saw of good days and bad days.

A year or so ago, pre COVID, I had a follow up appointment with a new younger dr and for the first time ever she told me “We don’t know everything about the brain. We don’t know why some people can come through surgery relatively OK and yet others have no end of issues. We just don’t know”. This was the first time I have ever had a Dr admit that they don’t know it all. I must admit, I was pleasantly surprised, as the former neuro was of the opinion 'It’s nothing we have done… …it must just be you." like we choose to be in agony.

They tried to discharge me off their books, but I’ve had to ‘re-invent that wheel’ and go through those referral processes repeatedly before, with more blood tests and more scans etc. I’m not doing all that again. So once a year I get a hospital referral sent to them to keep it active and I keep a copy of every scan, every test and every appointment, then when they say ‘Have you had this test?’ ‘Yes, and here’s the report’. Often we really do have to be proactive in our own care, especially when the system drops us.

Merl from the Modsupport Team

1 Like
9

I certainly agree with Merl, Ms. Eve in that we really need to be proactive with our healthcare. It doesn’t matter which country we live in.

I also get concerned with all the radiation we are put through and try to limit it as much as I can. I even discuss the mammograms practicality extensively with my PCP. I even joke that I hope I get dementia before brain cancer. I’ve had countless CTs, four procedures to get the ruptured aneurysm stabilized and all the angiograms, CTs and MRAs that go with it. I’m allergic to the dye so that’s another issue I contend with.

When I have a procedure, I drink a lot of water for months to get everything flushed out. One of our members, @Captain_365 had shared an OTC to help with ridding ourselves of the dye, I forget the name, perhaps you can search here.

Nerves do take an incredibly long time to heal and we need to be patient, but again I would reach out to your surgeon or a pain neurologist.

All the best,
Moltroub

2 Likes
10

Hi Eve!
I, too, had a coiling of a giant aneurysm in October 2018 including the insertion of a flow diverter (special stent). And I also have been experiencing something the docs call migraine without migraine, that is I have an issue with my sight which I didn´t have before the aneurysm. Especially when I am doing sports (jogging), this effect comes up. And moreover, the right part of my body doesn´t function properly: Leg and arm feel heavy, and I have a constant tingling sensation which gets worse in the evening. I was told by the doctors that it does not come from the aneurysm (although I had small ischaemic spots visible on the mri after the coiling). It is neither multiple sclerosis other doctors in another hospital told me. So it must be ME, since the doctors made everything all right :slight_smile: :grimacing:
It´s the same as the others in this group were told. And I feel like an idiot. Also I´m frightened because it´s getting worse (although they say the aneuyrism doesn´t change, it´s not perfect but ok) and frustrated- so at least you know now that you are not alone. And that all the doctors are the same :slight_smile:

1 Like
11

Hey Ferret,
We should NEVER…

NEVER.
I have found that it is often a common ploy of the medicos to put it back on us, especially when they do not have or cannot provide an answer. Initially, for me, CT and MRI scans were not available (Back in the 70’s), so they couldn’t see inside the skull. My pains/sensations were all written off as hypochondria. I had been to hospitals repeatedly only to be told ‘Nothing wrong’, I learnt to ignore it all (Most of the time) for 20+yrs. It wasn’t until there was a major issue (I lost my sight suddenly whilst driving) did the medicos finally decide to investigate.

You know your body better than anybody and if you feel something isn’t right, you have every right to ask questions, to investigate further, to seek and obtain a 2nd, 3rd and 4th opinion. Some of these medical professionals place themselves up on a pedestal as being ‘All knowledgeable’ but NOBODY knows-it-all. Dr’s and scientists are still discovering new aspects of both the body and brain, so to make out they know everything is more ego than fact.

Not long after my 3rd neurosurgery I knew something wasn’t right, I queried the dr and I quote ‘I’m the dr, I have done years of study so I know. You? You’re just the patient. You wouldn’t know…’ and then 6weeks later I had a follow up appointment with the neurosurgeon and he was less than impressed because there was an issue, a major issue which I again required further surgery to correct.

So, please, Don’t ever feel like an idiot, not ever. If you feel/believe/think there’s an issue follow it up. If there is an issue and you don’t follow it up, honestly, it could lead to a life long, permanent disability or worse.

Merl from the Modsupport Team

2 Likes
12

Oh, Merl, thank you so so much for your message!!! :grinning: It seems you have sensed that it indeed is an issue for me. I am not really feeling well, and still have symptoms, and am not relaxed- but I have stopped seeing doctors because of the feeling I´m to dumb to understand my body. I just can´t decide whether I have to accept the symptoms, because they are part of the game now or not. And I don´t know who to ask in order to find the answer.
Your message means a lot to me, because you gave back to me a bit of “dignity” being a normal patient and not somebody wasting the doctors´precious time (I hope you understand, it sounds a bit dramatic).
Ferret

2 Likes
13

No it isn’t being dramatic at all. The medicos deal with this sort of thing on a daily basis, they are often a little desensitized to it all. But for us the patients, it’s all VERY REAL and VERY PERSONAL.
For many years I worked with people with disabilities and to be honest, thought I knew all about it. Then I became a patient. What I knew was the theory of disability. Living it… …oh hell… that gave me an education I never wanted.

And it can be the same with many of the medicos, they have all of the theory in the world, but none of them have actually been ‘HERE’ themselves, so honestly, they wouldn’t have a clue. And that’s what we are here for. We’re not going to feed you the book theory, we’re here to share our lived experience. I can tell you it was a real ‘phew’ moment when I found others who had a similar experiences because the medicos were making out ‘He must be crazy in da coconut, cos that just can’t be happening…’
But it was happening and it was real.

We all know this 'cos we live it too.
Merl from the Modsupport team

1 Like
14

Ferret, I think you have yet to find the right doctor that listens to you. For all vision issues, I see my opthamologist. He may not know what’s going on, but it’s a start. Also you may want to touch base with a Neurologist. Some are better than others. It’s hard to understand that surgeons only deal with what they do, which is surgery. Any issues after that we have to go to a Neurologist. Perhaps finding one that has specialized in pain or stroke would be a start.

Being part of this support group has reinforced how lucky I am to have the doctors I do, they all listen and explain why they don’t know and send me to someone who may know. Sometimes I have disagreed with them, but they let me explain and we work it out. I have also learned that even if you have 3 docs telling you one thing, I know my body better than they do, don’t give up. I had one doctor disagree with the 3 and he was correct. It wasn’t even his field of expertise! But he told me to tell another specialist something (I forget what) which caused a biopsy. So I went from being told fatty tumors, to cancer, to the final diagnosis of a connective tissue disorder. It took over a year, so don’t give up!

Unlike Merl, who I adore btw, I had a doctor in ICU when I ruptured, Dr. Walker, I think. She let me know that she too had been in a Neuro ICU bed. Just knowing she had been where I was gave me Hope. I also have a pharmacist who just shared a picture of his skull after a horrible accident. The amount of staples he had looked like they exposed the entire right side of his brain and that was 20 years ago or so!

Hang in there, keep fighting for yourself!

All the best,
Moltroub

1 Like
15

:smiley: :smiley: :smiley: :smiley:
Yeah, it´s REAL. Thank you for being here!

1 Like
16

Yeah… that might be right, me not having found the right doctor who listens to me. But it takes so much time, and moreoever, it takes so much energy to talk to another doctor and hoping that he/she might find answers…
I´m already seeing a neurologist who sent me to hospital to check out for multiple sclerosis- he might be the one to listen. He said you know what- I have so many patients who have nothing according their mri, but still they have to use a wheelchair…
Maybe I should ask for another appointment…
Thank you for encouraging!
Ferret

2 Likes
17

I have not been able to sleep at all tonight. I have taken 75mg asprin Friday, Saturday & again tonight. I have no appetite & my stomach feels as before when I took asprin.
I worry as I bleed a lot for the smallest of cuts without asprin. I bruise really easy also & what if my blood gets too thin? How will I know?
I don’t know if platlet activation on the coils is common? This is still just a possibilty for my symptoms.
I should receive my perscription tomorrow for clopadrogil. I don’t know if I have to leave the asprin off for a day before I start it. I will check with the chemist.
Really don’t want to be on blood thinners for ever. Can’t enjoy eating anything as my stomach is so upset & feels like it’s on fire x

18

Sounds like you have a doctor on your side @ferret, be patient, it can take awhile.

Best,
Moltroub

19

@Eve33 talking to your chemist (I think we call them pharmacists here in the States) is a grand idea! But your doctor should have told you. I was on aspirin for a full week, kept taking it and then added the clopidogrel. I did not stop the aspirin, I am on both until I see Ms. Ryann.

Have you shared with the doctor ordering the blood thinners how bad you bleed? Also there are several types of aspirin on the shelves nowadays. My NP, Ms Ryann for Dr.Wolfe, said to take an Enteric type or a coated type, to help with any stomach issues. I found Bayer Enteric on the shelves the day I went so that’s what I am using, you might also want to take it with milk, ask your chemist. It’s a direction that’s on the clopidorgrel (Plavix).

Please tell your chemist and your doctor what is happening with your stomach. Stress your concerns to both. Ask your doctor about following the blood thinning. It may be your general practitioner who follows it, though I’ve always thought the doctor prescribing should have that responsibility.

It was here on this support group that I learned about aspirin toxicity. I had been on a low dose of aspirin for decades before I ruptured and no one checked that. Being on the 325 mg aspirin, I know someone is going to test me, as I will insist upon it, I figured my PCP can do it, when she does my annual physical. The surgeon is quite a distance from us and I cannot drive to her office, whilst the PCP is in our city.

Do keep in touch with us! I can read the concern in your words, which in turn has made me concerned.

All the best and a virtual hug to you.
Moltroub

20

Hi Moltroub,

I will ring & ask my GP for blood tests. I rang the chemist earlier & he said as it’s a low dose asprin 75mg it should be ok? It wasn’t the last time but I will stick with it until I get the clopidogrol.

Thanks so much
Eve x