I didn’t realize that tylenol could do this! When discussing the botox with my neuro nurses, they mentioned that any med can do this. I was very surprised!
Thank you for your response! I have always had a pretty strict diet because I have to eat gluten free and am pretty limited on the dairy that I am able to eat. I did get a list from my neuro of stuff to cut out. I was surprised to see nuts on there, I did eat a lot of them! I also would eat cheese with some meat instead of a sandwich. No more lunch meat, though I never thought of that either. I try very hard to cut sugar, as I have been a sugar fiend in the past. I have gotten a lot better with that! Some days I wish I could just go through a drive through to make life easier, but this lifestyle does not allow that.
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Hi! I am new to the forum. My 4cm aneurysm and 3mm one were operated on 22 ½ years ago. I have recently begun having debilitating headaches again. Last year; I tried the Botox. It wasn’t painful at all. For me, there was not much relief however. I did about 5 rounds before my lips And tongue got puffy after a round of Botox and so I stopped due to supposed allergy.
I am seeing a neuro scientist pain doc in the Chicago area - so far not drastic pain relief. Believe me, over 22 years there is no med or supplement I have not tried.
I apologize if this post is discouraging. I would love some new ideas and support.
Blessings,
Dr. Ruth
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I don’t think its discouraging at all! We all have different journeys. What is the difference between a neurologist and a neuro scientist pain doc? Is there different things that they do?
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Thank you for the kind response. A Nero scientist studies the brain related to meds and their impact on the brain. They are not neurologists. A neurologist studies the actual brain and it’s disorders. I hope that helps explain the differences.
I appreciate thoughts and prayers. This “migraine” episode has literally been in play since January. So since Jan, my pain levels have been a 6 or higher just about 24 hours a day. 
Sincerely,
Dr. Ruth
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That does help, thank you for the explanation! I’m so sorry that you are in pain so much! I will pray that you find some relief soon:pray:
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Insurance? OHH HELL YES!!! I had no end of issues with my insurer, in the end I had to get a lawyer involved as the insurer was putting up every obstacle known to man not to pay. I had an income protection component as part of my policy, firstly, they tried to under pay me. They stated that they only paid my contracted hours and not my actual hours. My contracted hours were to keep me retained, minimum 20hr/wk, my actual hours were 40+. I challenged this with the insurer and I was told “You’ve got what you’ve got and that’s all you’re going to get…” I was an advocate for my former clients and have been described as a bit of ‘a dog with a bone’, I won’t let it go until I get a suitable outcome. Eventually, they relented and paid the appropriate amount.
I pushed myself to recover (BAD, BAD idea) and returned to work on minimal hours, but things were not good. It used to be I had 2 speeds, full tilt and stopped. So the idea of pacing self was very foreign, but the reality is I really have no choice. I had a bit of a conflict with the medicos with some saying all was fine (when it wasn’t) and others saying things were not so good, but manageable. Well, it turned out things weren’t so manageable at all and they operated again (and again). These surgeries REALLY did me in and I had to apply for my Total Permanent Disability (TPD) cover.
Considering the obstacles the insurer had already put up, I decided not to play their game any more and told them I was getting a lawyer involved “Ohh don’t do that…” the insurer told me. “Too late”. I got a lawyer on a ‘No win, No fee’ basis and this was the best thing I could have done. They handled it all and got me the appropriate payout. Sure it cost heaps, but it saved what little sanity I had left.
I did try limiting specific foods, all of the ‘normal’ triggers ie coffee, sugars, chocolate etc. I had a neuro recommend cutting out ‘Amines’ from my diet. So I tried that too but without relief. I also have to agree about others viewing our visible scars. When they can see, they have some comprehension, but once the hair grew back and the scars all covered with a hat, I got a lot of that ‘But you look OK’ attitude. It is VERY common. I’m often saying ‘It would have been easier if I’d lost a limb, people would be able to see the impact and not question it…’ another issue I have found is that symptoms fluctuate MASSIVELY, some days I could leap a building in a single bound (OK so a bit of an exaggeration) but other days I’m lucky to be able to crawl out of bed. No two days are ever exactly the same and this can make it harder for others to comprehend ie “Well you could yesterday, why can’t you today???” But if they think its a simple walk in the park for us, they are VERY, VERY wrong.
Merl from the Moderator Support Team
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Thanks so much!
Welcome!
I have had a few tangles with the insurance company, but thankfully most of my stuff has been covered. I still have not seen my original hospital bill yet, 16 months later. I can’t imagine that is a good practice, but it seems the hospital is fighting with the insurance company. My surgeon was out of network when I had my rupture, but there was nothing I could do about where they flighted me to. I was not conscious and it was an emergency. I did struggle to get in for my follow up visit, but I have since switched insurance companies and it is all in network now. We will see how that goes! I’m so glad you got the insurance company to pay what you deserved! It is a nightmare to try to fight with them.
It seems, from what I read, that a lot of us push ourselves to be back to our former selves way too fast. I would imagine it is harder for those of us that had coiling and have no outward scars to show. I don’t think anyone can fully understand the fluctuation of the day to day, unless they have been through it. I’m starting to understand more about how people react. How people deal with an invisible injury. I have been surrounded by a ton of very supportive and helpful people from day one of my journey, but now I am really seeing how much they do not understand and won’t ever understand. Because they haven’t been through it.
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I didn’t read all the comments before making a reply to your post, but if you haven’t tried Chiropractic, you might give it a chance. For me it is so relieving … it releases tension and build up, relieved my headaches, increased circulation and helped increase easy movement… which helps the better functioning of all bodily systems.
Weekly adjustments from a gentle intuitive chiropractor did wonders for my headaches after my coil and stent procedure in 2011 for carotid artery annie. It is important to find the right Doctors/treatment for yourself… meaning a group of western and eastern techniques. Definitely try chiropractic.
Thanks for mentioning that. Some have recommended against it, but we have found help there. Our chiropractor is a specialist in brain-related issues and has been a help to my wife (a ruptured aneurysm survivor) and to me (who recently had a stroke). He is on top of the list of those we trust.
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I do use chiropractic care. I had been going twice a week, but have since cut back. It helped to some extent, but not enough to keep headaches away. I also tried massage, which made some improvement, but didn’t get rid of them. I still go once a month or so. I feel like I’ve tried everything!
And that can be really frustrating.
I too tried chiropractic treatments and, yes, there was some benefit, but the headaches remained. I’ve seen all sorts of practitioners from neurologists to opticians to ophthalmologists to audiologists to dietitians to physiotherapists etc. I tried hydrotherapy, a TENS machine, Botox, acupuncture, Bowen therapy etc. Then came the medications, heart meds, psych meds, epilepsy meds and the obvious pain meds, and although the pain meds help keep the headaches managed (not cured) some of the side effects can be nasty. I have tried combination therapies ie a bit of this and a bit of that but then some of the interactions between meds and treatments tend to send me backwards at a great rate of knots. I’ve also tried cannabis medications. Don’t get me wrong here, some have been of benefit in treating some symptoms but none have been my ‘key’. But once I had exhausted every option available to me it has all become a case of symptom management rather than cure.
No two days are the same, so trying to pinpoint how to manage symptoms has been impossible. I kept a pain diary, I looked for patterns. If there was a pattern I could alter what I do, the way I do it to manage better. There doesn’t seem to be a pattern. I am now at the point, a bit like you where “…I feel like I’ve tried everything!”
Although some dr’s like to put it all back on us when their treatments/remedies don’t work, Just know that you most certainly are not the only one going through all of this and the best we can really do is manage the best way we can and support each other. We know because we live it too.
Merl from the Moderator Support Team
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Thank you! I know that there are things I have not tried, but am not able to try. Or I should say, my neuro won’t allow. I have an allergy to aspirin and ibuprofen so I am limited with pain control meds and they wont allow alot of pain meds because of the possibility of altering my level of consciousness. I know that I am limited because of the 2nd aneurysm that was not cooperative with the bipolar coagulation treatment and has grown. Someday when that one is fixed (I know that it is a matter of when and not so much if because the one on the same artery on the right side ruptured at 3mm and this one is a mirror image so once it gets to the same size they will want to fix it) I may have more options. I think I’m so new to this still, even being a year out, that I’m still so thankful to be here and able to work and drive that it’s not as depressing as it could be. I’m hoping we can get a handle on it before it gets to that point, and before it could be made worse with another operation.
‘…not able to try…’ or ‘… my neuro won’t allow…’?? These are two different things IMO.
I’ve had a bit of a reaction to morphine so I’m not able to have morphine. But if your neuro won’t allow you to he must have a reason and must explain it to you if you ask.
Some dr’s may have some fairly firm ideas on treatments ie You MUST take these. I may listen to his recommendations and I may trial his recommendation. If I receive a benefit… BRILLIANT. But if, I’ve given them enough time for my body to build up a ‘therapeutic dose’ (for some meds this can take up to 2weeks) and I don’t get a benefit. I cease. Now I say ‘cease’ but I ween myself off, not stop meds suddenly. Stopping suddenly with meds can have some nasty side effects depending on the med.
If anybody EVER tells you they know all about it all, call ‘BULLS#$%’. Nobody knows all about it, not even the dr’s. This journey can have sooo manyyy differing twists and turns along the way. Even in my own situation, no two of my surgeries have been anything alike, they’ve all been different in procedure, in recovery and the long term impact. How you react how you recover from it all is VERY individual. There maybe some similarities but this is your journey.
“I think I’m so new to this still, even being a year out,…” And yes it can feel like that, but I have to say, to some degree, some of that ‘newness’ never goes. Even 6yrs on from my last BIG chop, some things still remain. You learn to live with it all. You and I have absolutely no control over any of this, so what can we do but learn to live with it all.
Merl from the Moderator Support Team
Well guys, I have decided to try the botox and it has been approved by my insurance. I go in tomorrow morning. I’m pretty nervous, I’m not sure why. I’ve been through so many painful things, this can’t be any worse right?! Here’s hoping it works for me! Wish me luck!
Best of luck with it all Kgrip. Like you say ‘…this can’t be any worse…’ Give it a go, it may just be your key"
Merl from the Moderator Support Team
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I had headaches for years. I’m 12yrs out from my clipping. About 6months ago I started on Aimovig and it’s been a big improvement for me. After going through all the meds you mentioned and narcotics. I ended up detoxing almost 5yrs ago, of course the severe migraines were back. Days of staying in a dark quiet room, vomiting. Most server headaches are gone, just mild to moderate now.
Which I can live with. I’m even on a special program just a $5 per month.
Of course it was a decision between my neurologist and my seizure specialist. Like I said life is a bit easier now
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Thank you! They told me at the appointment that the first round may not do much good. I have to agree so far. In fact, the first 3 days were worse than before from the irritation of the injections. That has eased a bit and they say I have to get through 4 treatments to see the full benefit. We shall see!