I thought I'd start a thread that we might be able to turn to when the pain gets bad for some ideas on what works.
I know when I was trying to figure out what was wrong with me for several months prior to finding the aneurysm and having the PED implanted, doctors kept prescribing narcotics for the pain. Luckily for me, my neurologist told me that after using opiates for a long amount of time gives you rebound headaches, as does long term use of acetaminophen (Tylenol). Narcotic use also gave me tinnitus (ringing of the ears) -- not sure if anyone's had that issue as well.
He then helped me to get off of the narcotics by prescribing the anti-seizure medication Gabapentin (Neurontin) to which I had a hell of an adverse effect (I think I had almost every side effect you can have). Though from what I understand, many people get lots of relief with no side effects from this drug. I then tried the anti-depressant Nortriptyline which really seems to help with a lot of the pain. I'm also on Cyclobenzaprine (Flexeril) for muscle spasms which were occurring quite often and eye twitching.
As for other methods of pain relief for me, hot showers really help to loosen up my head pain, ice on the back of my neck at the base or at the nape really helps, as does ice directly on the aneurysm site. Best ice pack ever? Bag 'o frozen peas!
I also have seen my Chriopractor who is an Sacro-Occipital Technique (SOT) therapist. She made me very aware that during procedures such as angiograms and surgery that the spine is often torqued and twisted to accommodate what the doctors are trying to do surgery wise and what the anesthesiology did while incubating you. She mentioned that adjustments are needed to get things lined up again to work properly in your favor (once you are off any restrictions). I have only been to see her once so far since my surgery, but what a huge difference one adjustment made! Again, I have to stress that she is a low-impact SOT therapist Chiropractor, not a WWE-jump-on-your-back-to-crack-it-ker-pow Chiropractor. I coupled the Chrioprator visit with a visit to an Acupressurist as well who worked on the side of my head where the aneurysm is, and I actually felt the muscles melting as he worked on them. Between the two I went almost three days with absolutely no pain, though do check with your doctor before seeking alternate treatments.
I'm big on herbal remedies, but apparently doctors are not since they want to monitor the Plavix/Aspirin thing closely, and are not fully aware of interactions with most herbal products, so I've stayed clear of these for now. Before the surgery however, I was taking passionflower and white willow bark with great success.
Would love to hear your ideas on pain relief! The way I figure it, the more ideas we have to pull from the better!
Hi Tara! tylenol and rrest worked best for the headaches following surgery. Gabopentin/Neurotin did absolutely nothing so my pcp tried doubling the dose and still was the same nerve pain so we discontinued! i wish i had some more to offer you, hopefully others will,i really question modern medicine-it has never helped except one of the percs but not sure which- percodan or percoset- the stronger one i think-it was 30 yrs ago when my finger got crushed inside a pnuematic rivit sqeezing gun
Tara I would love to hear more about the Chriopractor I am on most of the same meds you are only a lot more, due to my Fibromyalgia so any of the pain meds for that cause headaches..so frustrating...grrrrrrrrr
Hey Ron!
Yes I think percocet… That’s what they gave me after my c-section. It’s essentially oxycodone mixed with Tylenol. The generic form is commonly endocet. Tylenol is my go to these days. The pain specialist at Hopkins has me on the max dose per day, 4000 mg. But I am wary of its rebound headache effect. I don’t have much of an option at the moment since with the blood thinners ibuprofen is completely out of the picture as are herbal remedies. Rest helps lots but I’m starting to push myself to walk and do household chores and play lots with my two year old son which then makes me really want to rest. Working on building up my stamina so I can return to the classroom in October.
Hope you are doing well today!
I’m currently getting tests done or what two doctors have finally suggested is atypical trigeminal neuralgia, the pain sucks but it is what led them to find the aneurysm. I understand your pain and your drug interactions! Omg on the drugs that cause or rebound headaches!
On the chiro front, I go to a chiropractor that my husband affectionately calls my “witch doctor”. She is a low impact sot chiro. Sot chiros believe that everything symptomatic is related to the foundation of the spine known as the sacrum and the Top of the spine, the occIput, which is Latin for “back of the head” and how the two bones or areas relate to one another. Keeping these two normalized helps the brain and the spine happy and sending signals correctly through the body. Although my hubby pokes fun at her, my chiro has helped him walk on two occasions that he threw his back out, each time with only one visit.
A typical visit is first hot packs to loosen the muscles, then an exam which includes you resisting her much like a neuro exam, so she can get a handle on areas of weakness. Then she does low impact adjustments using her hands and specialized tools to make sure everything is in place. She does crack my neck but only because she has asked me if she can do so…she can do the same adjustment with her instruments but it takes much longer due to an old injury I have. I also have to admit that there have been times where she has one hand inside my mouth pressing on my jaw while the other is pushing my shoulder back and her knee is pushing my hip into alignment… Just forewarning because most people don’t exactly find this conventional,… Haha. Afterwards she ices up problem areas and teaches you stretches or yogaesque poses to strengthen areas of weakness.
From my earlier post, again, she told me on my visit last Saturday that it is vital that I see her following any procedure, MRI, ct scan or angio because the position your body is in during these can easily get your spine out of alignment and cause headaches/migraines/pain without you even realizing it, sometimes weeks after the procedure.
Hope this gives you more info. If you look in your neck of the woods, google sot chiropractor and the city that you are in. I’ve been to other non sot chiros… They crack, hurt, and you leave their office wondering if it did anything. When I leave Dr. Fanning’s office she has counteracted the pain and has given me relief. I actually drive an hour and a half to see her because there re no sot chiros local to me.
I am also on Nortriptyline and that works well even though the weight gain is a big bummer! I take 2 pills each night (down from 4) and that seems to work best. I tried going off of them a month ago and the headaches came back full force. My goal is to eventually be medication free, and I am 4 months post coiling. I find that ice works as well and also laying down for a bit. I work online and am still just working 4 hours shifts as more seems to increase the fatigue and headaches. If I get a really strong headache, I take 1/2 Vicoden but only as a last option.
Debbie's pain has finally begun to subside to the point that she hasn't had a pain pill today since early this morning (it's 7:20 PM now) This is 9 weeks out and two months to the day from her aneurysm surgery.
Someone told me, perhaps I even read it here - I'm about as confused as Deb is about now :) - about needing pain pills and the intern neurologist refused to give narcotics as though the patient was using her aneurysm to get drugs. Long term pain management in that case would be a new doctor.
I appreciate reading all of the ideas about how to manage the pain without drugs.
Working on building up my stamina so I can return to the classroom in October.