Chiari Online Support Group

Pain meds for Chiari I?

#1

My daughter has suffered with a headache every day usually pain levels around 8 for two years. We are just narrowing down Chiari with 3.8 mm and 4.4 mm herniation. Pretty for sure she has no other problems going on. Well, other than anxiety and depression (which she deserves!). We will be seeing a neurologist next week who has not supported my delving into the whole Chiari situation. He has only ever said that she has migraines and only prescribed epileptic drugs, migraine drugs, and new Aimovig migraine med. Would never prescribe any pain medicine because of rebound headaches. I am wondering for those who only have Chiari I if a doctor prescribes any type of pain relief medicine? She is currently only taking Aleve twice a day.
We are being referred to a neurosurgeon next but have to wait on the authorization.

Thank you for your responses!!
Barbara

#2

I can’t say that pain meds are all that effective for Chiari in my experience. It is important to think about the potential mechanism of pain to see that that makes some sense.

I did find that graded motor imagery using the head and necks for images (through the Neuro-orthopedic Institute) was very helpful for the lingering “Chiari” head pain. This was post-surgery when I found them. Neurodynamic exercises also helpful.

Regardless of what happens, your daughter has been in a chronic pain state for some time and will no doubt need to address central sensitization or other such brain involvement with pain perception - would not hurt to start gathering information and resources for that. I just read an interesting article from NOI outlining some developments in this area for chronic pain.

Given the propensity for doctors to prescribe medications to Chiari folk, it becomes important to evaluate if drugs are making a difference and remove them under a doctor’s care if they are not helping. Just something to think about while you think about ten other different things surrounding your daughter…

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#3

LOL! I guess I’m just so anxious to get her out of pain I’m overthinking it. When I look at her meds that she has been prescribed I do see Toradol and morphine for pain relief. Neither really helped. In two years these are the meds three neuros have thrown at her and NO relief: Sumatriptan, Naratriptan, Rizatriptan, DHE IV for 5 days in hospital, Thorazine IV for 5 days in hospital, Depacon IV for 5 days in hospital, Propranol, Neurontin, Aimovig monthly injection for 6 months, Gabapentin, Namenda, 30 Botox shots that made her headache worse, Benadryl with Compazine, Tylenol, Ibuprofen, Diclofenac, Venlafaxine, Depakote, Toradol IV in ER, Toradol oral at home, Zomig, Imitrex, Ketoralac in ER, Morphine IV in ER, Decadron, Thorazine oral, and Nambumeton, Zofran and Compazine for vomiting. Are any of these drugs typically prescribed for those with Chiari I?

Thank you for the suggestions of graded motor imagery and neurodynamic exercises. I will start looking in to them.

UPDATE TO THIS POST: I should have said that she has seen 4 neuros in the last two years and these neuros ALL said she had a migraine. ONE continual migraine for the last two years with never one day without a “migraine”. They have each prescribed the list of meds. I was only listing what I thought were the migraine specific meds but in addition to that they send her to psychiatrists because they say she’s depressed. Hello, she’s lived the last two years of her life in her room, lost friends because she couldn’t be relied on, lost out on going away to college and sits in her room taking online courses!

So…the list of meds actually goes on! I forgot her latest prescribed about 3 months ago for her “migraine”…Verapamil, and for depression: Elavil and Celexa together. Earlier anti-depressants were Effexor, Paxil, and other earlier meds: Tramadol (made her confused), Fluoxetine for anxiety, Phenergan for nausea, Concerta, or Ritalin for ADHD, Melatonin for sleep, and Riboflavin and Magnesium.

Yes, over the course of two years my daughter and I have been concerned with liver damage but “they” keep prescribing. We went to UCSF Children’s hospital for 1 1/2 years where they hospitalized her three times, botox, nerve block, and then when she turned 19 she was transferred to UC Davis seeing her current neurologist. I finally threw up my arms last month and said this can’t go on! It can’t be migraine every day for now 25 months and got into her medical records. I asked him to schedule an MRI for Chiari and he did so immediately but then when I pushed it and asked him to look for Syringomyelia he said “He would be glad to treat Nadia for migraine but if you want to explore Syringomyelia then you need to go to your PC.” Well then!

So, because her MRI notated 3.8 and 4.4 herniation we are just in the process of being referred to a neurosurgeon at UC Davis. I feel this is a good neurosurgeon because I accidentally got to talk to a neurosurgeon who recommended the UC Davis neurosurgeon for Chiari. How cool is that!..a neurosurgeon answered her phone and talked to me!!! She is not practicing anymore but recommended Dr. Lee at UC Davis so that is who the PC is referring us to.

My only last question is kind of answered by azurelle in the next post telling me to drop this neurologist. Gladly! I’ve just been thinking over the last few days that I didn’t need him now that we are being referred to the NS. We have an appointment next Tuesday that I want to go to though to see if he will eat crow pie!! Pretty for sure he won’t but I would like to see if he will order an upright flexion/ extension MRI and a rotational ct scan just to get a jump on things for the neurosurgeon. And, to cancel the spinal tap he wanted to do next month as I point out to him that spinal taps are counterindicated with Chiari. If he wants to just maintain the migraine story then we are out of there. If he wants to support us in the Chiari quest then I will consider rescheduling but we don’t need him, right?

My last real question if anyone knows is…can a neurosurgeon look at a CD with the MRI images on it and measure a 2014 and 2017 MRI for the tonsillar herniation because it was apparently under 5 mm and the radiologist didn’t measure it?

#5

I was on Vicodin and Tramadol for awhile, but in my experience, I did not like the effects it could have on me. I take Gabapentin for nerve pain. I’ve tried migraine meds and they didn’t always work. But, take whatever works, in moderation.

#6

TJ here. Yeas all of those meds have been and are consistenlty used for Chiari. But I would suggest that if Depacon IV didn’t work, something ls is going on. That IV has been used since early 2000 with amazing success. Good luck with your neuro appointment. keep us posted

#7

Depacon IV helped her at the end of the hospital stay and lasted for about two days. Hopefully a referral to the neurosurgeon can suss out what’s going on better than the “headache specialist” neurologist who apparently only knows about migraines.

#8

Barbara, I’m not even sure where to start… HOW ARE YOU??? I ask because I have a pretty good idea. I too am an adoptive parent (10 times, I didn’t learn with the first few LOL) all with special needs (medical and otherwise) I can well understand the road you have been on. I am sorry none of the laundry list of treatment you and your daughter have been subjected to has had the desired results. I am especially sorry for where this road has taken you. I have been on that same road for a very long time and know every twist and turn and feeling of not being able to help the one you love so very much. Given my experience before my disease wiped out my life plan (I was a medical professional on multiple levels) it has been especially hard. Let me assure you of one thing. EVERYTHING that has been tried to this point has good rationale and research behind it. AND there is much more than can be tried. Keep your headache guy in the loop. He will be an invaluable resource. (even if he seems a jerk, most in the neuro field are - I think its a job requirement…) He certainly didn’t give up. BTW try a couple Excedrin washed down with a mountain Dew - don’t laugh. The only thing I didn’t see on your list was a caffeine burst. The first thing an anesthesiologist will try with a spinal headache caused by a CSF leak (much the same as a blocked flow from a chiari is IV caffeine. Your daughter has had enough needles and a mountain dew might be a treat LOL.

Trying Amivog was brilliant, I’m sorry it didn’t work. One of the results of classic Chiari is pressure on the trigeminal nerves (they come up to the brain where chiari occurs) activation of trigeminal nerves release CGRP and other peptides that cause the release of proinflammatory mediators. This failure may indicate the cause of your daughters headache is not related at all to the chiari but rather something else OR it may mean the surgeons have an answer. It may not seem like it but progress is being made. ONE surgeons input (even if they offer a solution) is not enough. You can’t undo brain surgery. I see you are in California. Its a big state but if possible try Dr. Anthony Wang at UCLA. I’ve known him for a while, and hes a good egg. He is excellent with Posterior fossa decompression although he has written well that the more frequent problem with young folks is not so much the chiari but often platybasia or basilar invagination. They have developed and lead the WORLD in the evaluation of cerebrospinal fluid movement using high-resolution 3 Tesla MRI scanners as only a part of the study. Cine is popular with chiari patients but has been disproven for flow studies. There are a few urgeon who love it. Avoid them…

Despite the herniation they found, there may well be other causes. She started and is at an odd age where all manner of things can happen. That shoulder pain/ headache could be coming from sponylitis or autoimmune spondylosis common in Russian heritage and starts at her age… Don’t give up you haven’t I know but still we sometimes. Glom onto an answer because we are at so desperate for on only to have it be a red herring. Never forget for every chiari under 4 - 5 mm that symptomatic, there 8 thatare not.

But more importantly please take care of yourself. Your daughters pain may be a 10 but your mental pain is much higher. Do you have a support system that can give you some time away? It took a long time for my wife and I to learn just how GOOD a break can be for both us and the Kiddo…

I realize she is 20. In many was that’s even a tougher pplace for a caring parent than 10.

We have a gentleman on one of our other communities who is very knowledgeable not only about Neuro issues (as a patient) but as an adoptive parent. Would you mind if I introduce you two?

In any event MY thoughts and prayers are with you and you are NOT alone. Everyone is here to help even if a bit cynical and opinionated… Its my job to make sure THAT doesn’t happen (too much) but there are always nuggets to be gained. Please stay in touch. I am following your journey but am often tied up in other matters. None the less you have touched me with your story and I want you to know I very MUCH care

TJ, Bens Friends Community Manager tog

#9

Hi TJ! Thank you so much for your supportive and informative words! Wow to having adopted 10 children! I would have liked two but had to settle for one and she’s been the perfect one for me. My daughter welcomes the Mountain Dew test! It’s taken me some time to answer because your questions touched a raw nerve. Actually, I’m treading water. I have so many things I am juggling that it gets difficult if I self-assess. I have no good support group. We moved back here 4 years ago and since then I have lost my mom and my best friend here. My daughter, Nadia, and I get out together if she’s feeling up to it. Having adopted her as a single mom I had to get used to always having full responsibility for us. (However I wasn’t quite planning on still being tethered to her at 20!) :>) We are going to see Hamilton in SF next week so we are both looking forward to that. I am just happy to have discovered this forum with the ability to bounce ideas and questions and get answers from caring people.

Thank you for reassuring me that the two years of traveling to SF (4 hours) for doctor’s appts, meds, & hospitalizations in SF have all been worthwhile even if they haven’t led to an answer. Last month though I got to the end of two years and just said this can’t go on. We can’t go to the next neuro appt, get a new migraine med and an appt to come back in three months knowing that 4 more of those appts and we will be saying three years! SOMEONE has got to look around for another cause of this headache! I needed those measurements for anyone to believe that it could be something else. At least I now have the PC’s attention. Won’t know if neuro will get off his migraine horse until next week. He may not be capable of getting off it but will have to see or find another neuro who will look around.

Good advice to me to not go with the first neurosurgeons recommendation if surgery. If it comes down to that do I go back to the PC and tell her and ask for another referral? The neurosurgeon who answered her phone and spoke to me gave me two neurosurgeons at UC Davis to go to so I do have another name. No one has taken into account my daughter’s Russian heritage and considered any issues related to that. I appreciate your ideas on that.

What do you make of these words from the neuro when I was asking for looking at Syringomyelia…“I am really intent on treating you but cannot encompass your headache and Syringomyelia together. If you would like a separate MRI C-Spine please consider discussing with your PC. I do not have clinical indication for it but will be glad to yet re-visit the issue.” I can’t get a sense of whether he only wants migraine and won’t look around or whether he’s not competent to look around. I don’t feel her PC is the one who should be determining Syringomyelia as she barely knew Chiari and wouldn’t request the MRI for me so we could get it done in our area versus going to Davis. She didn’t want to step on his toes. I would LOVE to get to UCLA with their Tesla 3 MRI scanners but not sure I can manage that with Nadia’s insurance and with a 9 hour drive there and stays but as it progresses with her neurosurgeon here I will keep it in mind and would do if it can be arranged.

That’s an interesting thought that her 4-5 mm herniation could be asymptomatic and something else causing the headache. I just keep coming back to…perinatal encephalopathy on her Russian med record, mild cerebral palsy, always light and noise sensitive since baby, 3 yr age borderline MRI (no measurements), sleep apnea (tonsillectomy at 3 resolved it), always been clumsy, mild scoliosis, headaches and dizziness starting age 11, hit her head the day the two year headache began, intermittent: blurred vision, dizziness, nausea, vomiting, fatigue, NO migraine med has helped, 5 day Depacon IV reduced it from a 10 to a 6 for 2-3 days, left shoulder pain since 10/2017 now radiating down to pinky, pain was on average 8 but Feb 25th started her on keto diet and now pain level on average 5-6 spikes to 8 with exertion, can’t bend over without increased pain, laughing hurts, says headache starts at base of skull and travels to forehead above right eye. It feels like to me (someone who is totally not medically educated) to be Chiari I.

Yes, please connect me to your knowledgeable gentleman in another community. I welcome any support! Thank you for your kind words!!! Barb

#10

I feel your story. I wouldn’t worry too much about why the docs dont want to look deeper. Dont spend your precious energy there. They just dont. Keep looking. Baclofen 10mg ×3 and THC works best to manage my chiari headaches.
It’s not your job to understand why people especially doctors do what they do. You will drive yourself mad. Just keep doing what your doing!
YOU’RE DOING A GREAT JOB & DONT GET DETERRED OR DISTRACTED BY ANYTHING LESS THAN GOOD CARE!!

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#11

We’ve tried THC oil under the tongue and it didn’t help. LOL! Quite a story about the local shop giving me the medical approval for her headaches with both of us standing there but I didn’t want her going in and buying it. Thanks!

#12

Its hard to know because I’m not privy to what else he has for information. Syringomyelia has some pretty specific symptoms (headache not specific). With the uncertainty about gadolinium retention from Spinal and Brain MRI, not only are many practitioners trying to avoid as much as possible, many imaging labs are tightening the parameters. Putting the referral into the hands of your PC makes some sense.I would think however your PC should have a conversation with the neuro. Its best for everyone if the Pc initiates the consult as he would have the most relevant info…

You are going to see Hamilton… I’m green.

gadolinium retention: https://pubs.rsna.org/doi/10.1148/radiol.2018181151

#13

Yes I agree, THC oil doesn’t work for me either. Each way works differently, for me edibles help the pain best. Smoking or vaping can provide me with a small burst of energy, so maybe then I could take a shower. They have creams, rubs, vapes, edibles, flower, extracts. Then theres some heavier stuff like shatter, wax and RSO. Depending on severity of pain. I’ve been thru the many, many meds. THC is unfortunately the safest medication, I believe that I take lol. So it may not be something you look more into now, but at least you’ll have this to refer to if you find yourself stuck in a corner! Best, best, best of luck!!! Keep us posted!! :heart::heart::heart:

#14

I’ve forgotten to say in all this that she has never had “migraine with aura”. It’s always just a headache classified as a migraine.

#15

For anyone with a medical background…I am reviewing all my daughter’s medical reports to provide a summary for the neurologist and the upcoming neurosurgeon because apparently medical records don’t travel from doctor to doctor even though I provide the preceding doctors’ names.

I have just found an ECG at age 3 for my daughter that says: Abnormal ECG T Wave Abnormality, Possible Anterior Ischemia. The ECG was reported to me as Normal, that is noted on the record. Keep in mind that it was done at 3 years old, it was preformed under anesthesia when she was having a hearing test, and there have been no problems discovered in the next 17 years. She is now 20. Thanks for any help on this.

#16

TJ! She tried aspirin and Mt Dew at night three days ago but then went to bed so we weren’t sure if helped. Yesterday morning 2 aspirins and diet Mt Dew. Headache reduced from a 5 to a 4 which is the first time in 2 years she has reported a 4. However went up to 6 with any normal movement during the day. Today upon awakening the headache is at a 4 again. Took 2 aspirins and some diet Dr Pepper. The only reason she is recently reporting 5 is due to keto diet which she started a month ago. Now 4 either with caffeine or continued keto diet with full month in ketosis.

#17

Try Excedrin headache formula with the diet dew… Ever lil bit helps… It’s the caffiene NSAID combo… Esspeso too. But Excedrin ha a pretty good dose of the caffiene. There is Canadian product called 222 that works well too.

#18

I’ve been taking riboflavin and magnesium daily for ages, and I have fioricet (butalbital, caffeine, and Tylenol) as an abortive (up to 3x per week) and if/when that doesn’t work I have migranal, which I can use up to twice per week.

The only thing that has ever helped to prevent them for me was Botox - which is prohibitively expensive for me. But maybe not for your daughter.

Maybe one or more of these would be worth talking to the doctor about.
Lots of luck!

Edit to add - I’ve had Toradol IM several times when the DHE (nasal) didn’t break it. Toradol ALWAYS works for me. Then I get to sleep the rest of the day and wake up without a hangover.

#19

Oh my goodness! What a GREAT Mom you are!!! You are such a relentless advocate for your daughter. I hope she realizes how lucky she is although the poor thing has really had a very hard journey with all this. I think it is reasonable what your neurologist is saying about the MRI of the C-spine to look for syringomyelia. Syringomyelia in the cervical spine has very distinct symptoms, many of which involve numbness and tingling of the face, arms, hands, etc. suggesting cord damage. If your daughter does not have these symptoms, then it may be difficult to get I surance approval for an MRI. Because the neurologist is not seeing these symptoms, he apparently does not feel comfortable ordering it which is reasonable especially if he thinks the Chiari is not a primary problem underlying your daughter’s headaches. However, the neurosurgeon is well trained to evaluate the Chiari and her symptoms and decide if a C-spine MRI is indicated. For what it is worth, you DO NOT have to have contrast to see a syrinx so you don’t have to worry about that exposure for her kidneys. I think you are on the right track to be seeing a neurosurgeon at this point, as long as he or she is well experienced with Chiari. You can also have second opinions done remotely so bear that in mind for the future. Try to have all of her imaging done in one place where possible to make it easier for other doctors to see records and for you to get and send copies. I truly hope you are able to find answers and solutions for your daughter. She should not have to suffer like this. Hugs to you both!

#20

Yes, seeing a neurosurgeon is definitely on the right track. Often neurologists aren’t as well versed in the specifics and all of the different symptoms related to Chiari malformation. My daughter never had symptoms - her malformation was noted on an MRI follow up after brain tumor resection. Even then, it was only noted because I had just previously mentioned that I had been diagnosed with Chiari and the neurosurgeon then saw the cerebellar tonsils on MRI and then ordered a full spinal MRI to rule out syringomyelia. She had two and her decompression surgery was scheduled after that! As for the headaches, one of the ways I new mine weren’t migraines was that I was on migraine meds at the time (which worked for migraines) and when I took them it made my Chiari headaches worse! Ibuprofen and Pepsi works wonders for my headaches.:slight_smile: I learned of the Pepsi trick right here on the Chiari Support page - I read it in a discussion at one point, as it had worked for somebody that had a headache that nothing else had helped for years! Keep up the advocating for your daughter - there will be a physician that will be much more knowledgeable and help her find some relief.

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#21

@mydogsmom Hi Barbara, just checking in. ow did the appointment
go??