Hello all! It’s been a bit since I have posted, but I have just been trying to settle in to my new normal. It has been 16 months since my rupture and clipping surgery. I have had a pretty good recovery, except for just a few things. The most debilitating is the daily headaches. I read about others dealing with this the first couple years and then it seems to improve a bit. For me it has not improved at all thus far. I have now tried nortriptyline, topamax, labetolol and I take metoprolol daily. My neurologist wants to try the botox injections, but I am afraid to try it. The side effects look pretty scary, and I have a track record of finding the best of the side effects. I had to stop taking topamax because it started messing with my vision (who knew it could make you blind?!). I am very limited with treatment options because of the 2nd aneurysm that we found out at my 1 year angio, is growing after bipolar coagulation treatment when I had my clipping surgery. I have done massage, I use oils, I get sleep and drink tons of water and my neurologist told me no exercising anything more than walking. I try to follow all the “rules”, with no relief. What has worked? Does anyone have any current experience with the botox injections? Or long term botox treatment? Everything I have found on here dates back a few years.
I would afraid of Botox too and won’t do it . I am sorry you are dealing with headeches daily . Have you tried supplements ? Magnesium ? Or other preventive medicine propranolol ? I totally understand it probably connected with surgery , but may be to check other possibile reasons : neck or spine ?
I do take multiple supplements daily, with no relief. I also have taken 2 different beta blockers for blood pressure that is supposed to do double duty and help with headaches, but that does not help. Or maybe it is helping and my headaches would be much worse without it? I currently take metoprolol every day for blood pressure. My neurologist has said that it can be from the nerves being affected during surgery and it will take a while to improve, if at all. I also was in a car accident 4 months before my rupture and had whiplash, so I do think my neck is playing a part. That is where the botox comes in. She thinks it will give me relief because it is supposed to help with the muscle tightness in my neck and shoulders. I’m thinking I should just do it and try it since I have no other options, its just scary. I have been seeing more studies that show that the injections can actually damage the muscle over time and make headaches worse over time. I was just hoping for some feedback there. I guess atleast my neurologist acknowledges that the headaches could be a result of my surgery and rupture, and is very adamant that we get them under control because she says living in pain is worse for you.
Hi Katy, sorry you are having headaches. Could it be something you are taking? The supplements, the BP medication? Perhaps try excluding things and see if the headaches stop. Also I would suggest avoiding any kind of heavy chemicals, household cleaners or pesticides. They always give me headache.
I was on metoprolol for my heart, but got off it because of my rupture and the headaches have pretty much disappeared. Ask your neurosurgeon about the metoprolol. I use peppermint oil mixed with some coconut oil to relieve headaches of all kinds. I even rub it into my neck that has 3 dislocated vertebrae. I also use some muscle rub from CVS, it’s got menthol and camphor as the active ingredients. I find it to be much better for me than BioFreeze. And as you’ve probably read, make sure your getting enough protein. If you are properly hydrated, then protein bar should possibly help but it takes a bit of digestion to get it to where it needs to go. I use Premier because it’s not only available in my town, it has 30g of protein in one bar or drink. I did do two sphenoganglia blocks that helped a tremendous amount, the second one hurt like the dickens and I won’t go back for another. It’s where the radiologist goes up your nose guided by X-ray and sticks a needle in your brain, injecting lidacaine I think it is. But I do the hydration and protein first and it has always helped.
Thank you for the suggestions! I just take the things that my neurologist has ok’d and told me help with headaches. Except for my b-complex. I also am very careful with chemicals and smells. I cannot do any perfume or anything. Only naturally scented things that are not strong in my house, and a lot of norwex so no cleaning chemicals. I also have tried to adhere to the diet that she has given me. Just cutting out foods that can trigger headaches. Sugar, lunch meats, nuts, aged cheese, etc. I will have to see if there is anything I can cut out. Unfortunately I cannot stop taking the metoprolol because it seems to be the only thing to keep my bp down and with a growing aneurysm that is very important.
Thank you for the suggestions! I do drink a protein shake every morning for breakfast with 30g of protein in it. I get them in costco size packages so I never run out because I have read that protein helps. I also use an oil called past tense from doterra on my neck that does help for a time. I also drink lots of water. My neuro has said that she thinks it is the nerves, from my surgery. That procedure sounds awful! Definitely sounds worse than Botox injections. I’m sorry that you had to go through that!
I have had experience with Botox. You state “…it will give me relief because it is supposed to help with the muscle tightness in my neck and shoulders…” And yes it will. Botox stops a neurotransmitter being released and causes flaccid paralysis. IF the muscle tightness is the cause of your ongoing symptoms, it may help. But it is not always the magic bullet that some doctors make it out to be, so if you do decide to go down this path I would recommend you go into it with a very open mind. If it works FANTASTIC, but if it doesn’t, don’t be devastated.
I had a neurologist who swore it was the magic cure and when it didn’t have the desired result he blamed me, like 'Well, it worked for others. It must be YOU…". A bit of my history: I’ve required 6 neurosurgeries and have a VP shunt in my skull. The first couple of surgeries I recovered OK from. I say ‘OK’, not perfect, but I eventually got myself back to functional. I had headaches but I could manage around them fairly well.
Then a few years later came the third and fourth surgery. This lot really did me in. The surgeon’s view was ‘We operated, we fixed’ but this was far from fixed. I went to a few other neuros to try and get a 2nd opinion. I tried every suggestion that was given to me, everything from hydrotherapy to acupuncture to Bowen therapy to a TENS machine etc.
Then one particular neuro went on and on about Botox being the miracle I’d been searching for. For me it was very painful having the treatment, stung like a bee sting. Now some would say ‘Ohh, a bee sting, that’s not too bad…’ My treatments were 30 odd injection in my face, neck and shoulders. So that’s 30 odd bee stings with each treatment. I thought 'And some people get this stuff for cosmetic reasons. WTF???" but when used cosmetically they start with a small amount of local anaesthetic in the area being treated. Because this was for medical reasons no anaesthetic was used. I was in agony after each treatment and the resulting headache was HELL, it took me days to recover enough just to function from each treatment. The treatments were 6wks apart and after the third session my wife said ‘Enough already’ and I had to agree. There was a lot of pain for very little gain.
Later, after another scan it was discovered that there was a surgical issue and I underwent 2 further surgeries, these were to ‘fix’ the issue. They did not, so now I have to manage the best way I can.
I Must say here, my pain is not muscular and believe that the surgeries themselves contributed to my ongoing situation. For some people Botox most definitely has improved things for them, but I am not one of them. Due to the hype that the neuro put on Botox I was expecting that ‘miracle cure’, alas it was not to be for me. Hence my suggestion of going into it open minded. If it works for you, that would be brilliant, but be prepared that it is not always the miracle cure that some profess.
Best of luck with it all and I hope you have more success than I.
Merl from the Moderator Support Team.
Thank you for your response. I am sorry that you have had to go through all of that. To be honest the injections themselves are very scary to me. I’m not sure why, as I have gone through brain surgery and gotten tattoos since and basically had the attitude that if I can make it through the recovery from a rupture and surgery and icu and the pain it all entailed, I can make it through anything. These injections though, scare me. I do understand that it is about 150 units through 30some injections in face, temples, occipital area, neck and shoulders. That sounds terrible! I feel as though I’ve had an open mind through all of this and am willing to try just about anything. The disheartening part is that if this doesn’t work, I think we are out of options. The neuro has said with the growing aneurysm in my brain, my options are very limited. Though she seems very adamant that the pain be controlled. Also, if it is nerve pain from the surgery these injections will not help if they are more for muscle pain, correct? Have you had any worsening muscle condition from the injections?
I have not tried Botox, but I found great headache relief through amitriptyline, aka Elavil. I went to a migraine specialist a few years after my surgeries, when my headaches didn’t lessen. She prescribed it as an off-label use. It makes me sleep long and soundly, which in my personal opinion, is the root of its effectiveness. I think my post-ruptured brain’s damaged ‘filters’ made me feel overwhelmed all the time. I believe the long deep sleep gives it a chance to process the day’s onslaught of information, and gives my brain a thorough washing. That’s my theory, anyway. I’m just grateful I found something that works for me, and that my life can accommodate my sleeping 9-11 hours a night, not something everyone can afford to do. Good luck to you; don’t give up.
Everyone is different but here’s my journey with headaches. Sorry it’s so long. I’ve had migraines my adult life. 6 years ago my unknown aneurysm ruptured and was coiled. Coiling left a remnant aneurysm which was clipped almost 2 yrs ago. My clipping did not cause or worsen my headaches, but the initial rupture/coiling did make them worse. I started seeing neurologists and learned that my blood pressure medicine, lisinopril, that I had stopped, actually helps headaches so I restarted that. Headaches improved some. Then I tried Emgality, one of the new CGRP drugs, and I had a bad reaction to it so cannot take those meds. New neurologist prescribed Topomax and I also could not take it. Then I started tracking my headaches with a phone app to help narrow down triggers and track frequency/severity. My doctor thought my headaches could partially be from medication overuse, I only took Tylenol or Advil but I took a lot of both since the rupture. She recommended I stop the pain meds and stop all Aspertame. I did both and then on my own I started taking magnesium 250mg, CoQ10 100mg and along with the lisinopril. It took a few weeks but headaches started improving. First week after stopping the pain meds was rough. Then I added melatonin 2.5mg every night for sleep and noticed drastic improvement in my headache severity and frequency. I tried the time release melatonin but that triggered a migraine three different times so I went back to the 2.5mg. It’s too soon to know if my success will be long term but in the past 4 months, only counting the headaches that last more than 30 minutes and worse than about a 2 severity, I started at about 22 headache attacks per month and now am at 8. I was also told I could try Botox and probably will if my headaches get bad again. I can live with 8 or so mild/moderate ones a month, I couldn’t live with 22 moderate/severe. Best wishes that you find what works for you too.
Thank you for your response. I am so glad that is working for you! I tried Nortriptyline for a while, and once I got up to the dosage I was supposed to be on for relief, anxiety, and help sleeping it had the reverse effect on me. I was having more trouble sleeping and more anxiety than I had to begin with. It did work for a bit, but it seems like as soon as it got to the therapeutic level in my system it reversed on me. I have heard it works well for people though!
Thank you for your response! It sounds like we have been on a similar journey with headaches! I did take topamax with too many adverse effects, one being my vision and immediate stopping of that medication. I do try to stay away from sugar because my neuro said that they are a trigger for headaches. I don’t do any artificial sweeteners at all. I was also told that taking tylenol daily, which I do some weeks, can cause more overuse headaches. So I try not to do that. I have to take melatonin to sleep at night, so I take one that has chamomile and lemon balm in it for calming as well and that helps at night. I feel like I have gone down the list and checked every box. I’ve taken everything my neuro recommended, I drink lots of water, stay away from sugar, sleep 8 hours. She has said that it is normal after having a rupture and your brain cut into, to have headaches. The tricky part is figuring out how to control them!
" I am sorry that you have had to go through all of that." Me too but if a dr suggested a treatment I gave it a go. I’ve often said ‘If someone suggested standing on one leg, facing north singing kumbaya would help, I’d give it a shot’. You just never know, someone may just have the key. I just haven’t been fortunate enough to find my key yet. The treatment I reject may well be the treatment I need, so try them all IMO.
The other point I’d like to make here is that if a Dr makes a suggestion and we say ‘No’ it can be held against us ie ‘The patient is not following recommended medical advice’, I’ve had this happen before… …never again. They cannot say I haven’t tried.
You also mention ‘Nerve pain’. Some medicos believe in nerve pain and some don’t, some say it’s manageable some say it’s a psychological issue. Some of the treatments for nerve pain are NASTY and some of the medications for nerve pain have some awful side effects. I’ve been there, done that. Never again. But as I say give it a shot, if it works for you then that’s brilliant. One of the problems with pain is that it is very individual in level of pain, the source of the pain, the triggers of that pain and the treatments for it. What can be a wonder drug for one can be like a sugar tablet for another. It really can be a case of working out what works best for YOU.
DO NOT let anyone on this journey tell you what is best and what is not. Others who have not been on this journey can be filled with useless advice about friends/family ‘who had exactly the same thing…’ and the story that goes with it, but nobody’s journey is EXACTLY the same. Nobody’s. Take their advice with a smile, but remember this is your journey. Your recovery at your body’s pace, not a timeline. I tried to set my 2nd recovery to the relatively rapid recovery of my first neurosurgery. Ohh, that was a bad idea. Listen to your body, it will tell you. I didn’t listen and tried to push on through. Don’t be doing that. It’ll only make your recovery harder and longer.
Merl from the Moderator Support Team.
viv22, I’m betting a lot of members would like to know which app you use to track headaches. Do you mind sharing?
My neurologist said anything taken for headaches can give secondary headaches, so he said no more than twice a week.
(did not read other replies)
Have you tried a strict diet eliminating migraine inducing foods? I am 44 and just this past year have finally done it. It has made a major difference to me. Ones you don’t think about as triggers are: dried fruits, certain nuts, and citrus. Taking those things out has completely changed my life in the past few months!!! I can eat baker’s chocolate, but no cocoa!!! When drinking, I had been drinking arnold palmer’s (1/2 lemonade and 1/2 tea) not thinking about the lemondade and still having headaches. Took those out and major difference. Also PRESERVATIVES. I was gone on vacation and eating out 3 meals per day I got very sick the next week when I was home. So now I have figured out to eat non-processed foods when I eat out, that mean’s salad with oil and vinegar. My life is so much better in just the past few weeks by being strict!!! Try it!!
The headache app I’m using is HeadApp! I like it because it’s free, customizable, and I can download the data without it being an extra charge. I tried Migraine Buddy which works great but they do have a fee for downloading the info.
I fear that is part of my problem, not listening and pushing through. I could not wait to get back to work and do all of my “normal” stuff. It has been mentioned that I may be doing too much and not resting/relaxing(what is that?!) enough. Resting is not and never has been my strong suit, and I think it is even harder to say no when people think you look healthy and the same as before. When my head was bald and I had a visible scar ear to ear, people were a lot more understanding and less demanding. I need to get better at this, I know. I, so far, have tried everything my doctors have thrown at me. I am newer to this world, and I’m trying to keep an open mind about everything that is suggested. The list of foods I should limit was pretty long and seemed even longer because I already have to eat gluten free. It seems I may be living on vegetables and baked chicken soon. I have decided to give it a try if my insurance will approve it, so we will see now what they say. That is a whole nother avenue with brain injury isn’t it(dealing with insurance)?