Chiari Malformation Community
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620923 tn?1452919248

TOPIC OF THE MONTH~~~ April 2014

Hi all this month's question is  meds, which ones help and which ones are advised to avoid at all costs.....

For many we know meds do not help with the pain we experience with Chiari....but I wonder if neone has tried something that took the edge off without causing  drowsiness, or balance issues since we have those already.

Please mention if it was a pre op or post op med.....and also mention if it was post op management meds for surgical pains....as we all have tried so many diff things.

Thanks for sharing : )
22 Responses
5952632 tn?1377270669
Between the time of being diagnosed and surgery, nothing much was working except the shots of morphine and dilaudid in the ER that helped to take the edge off.

Robaxin and Lortab were the main ones that I used when healing from the surgery.  I had to make sure to take them together though, since separately they didn't seem to do much.  Another med I was on for various symptoms that I urge EXTREME caution with is Lamictal.  I was put on an emergency step down dose recently dude to severe depression and suicidal tendencies caused by it.  Off of it now and doing great. And I think a lot of people who have taken ambien agree with me when I say that medicine is pure craziness and what it causes.
620923 tn?1452919248

  Thanks so much for sharing this info as I am sure it  will be helpful to someone else on this site.

For me, there were no meds pre op either....and I feel I was taking far too many NSAIDS....it really was beginning to worry me.

Post op- I could not be on morphine as it affected me and I was vomiting and just sick....so once my meds were changed I saw a difference...I was put on dilaudid and valium...they worked and continue to help if/when I have a need for pain relief.

4760166 tn?1398360913
Morphine doesn't work at all for me.  Dilaudid did for post-op pain (IV helped more than oral)

The drug that creeped me out the most was topamax.  All it seemed to do was make my whole face numb.  I tried it before I was diagnosed with Chiari, though ... tramadol helped a little initially, but I built up a tolerance fast, and upping the dosage also increased the drowsiness.  What is the point of feeling better if you just want to SLEEP, ya know? then it just started having no effect but the side effects and I quit it.
992677 tn?1537672503
My system doesn't react normal with drugs, never has. Morphine may as well be water, Fentanyl is the exception. They gave it to me in the ER at Cleveland Clinic as well as post-op. In the ER it took three shots but it did help. And it had 0 I'll effects on me. Nurse told my wife I'd be dopey sleepy in 15 mins, later after the third shot I was still fine except with considerable releif.

Topamax and me absolutely do not get along. Ultram did help slightly with some symptoms but turns out I'm extremely allergic to it.

So all in all- nothing that can be used at home on a regular basis. Even the Fentanyl as the patch they give use is useless.

7489440 tn?1442011976
I'm still looking for medications that might even help relief migraines. I am pre op, and my journey has just begun. I have been known to get addicted to pain meds ( Tylenol 3 with codiene, vicodine, as well as other prescribed pain pills that the er would prescribe me when I go complaining about a headache that I've had for several days). So I avoid them at all cost. I told both NL and PCP I don't want them prescribed.

Muscle relaxers they want to prescribe them for the tightness of my neck as we all know it comes along with these headaches. I don't know if I should try them or walk away. I know Valium helps but I'm scared that I will build a high tolerance to it and eventually get addicted to it as well. So I think I will be doing research on them.

One med that has really impacted my life in a negative way was Topamax! It worked for the first week but as soon as I increased the dose on drs order it made my appetite become surpressed. I didn't want to eat. There for losing 15 lbs in the first month. My PCP was concerned with this and has decided to take me off the med. It made me feel stupid, when I knew what I needed from the store and got there I just stood like I didn't know what I wanted. It made me feel real bad.

A NS from Baltimore wanted to sign me up for a trail medication. It called Ketamine, which is basically like lidocaine but its in tablet form. My friend who suffers from cluster headaches says it has helped him as he has started his trail already. But where it might help ppl with cluster headaches it might just help us chiarians as well. So I'm going to research it as well as lidocaine before I do decide to take it. But I will keep you all posted if and when I decide to take it. Who knows we might be able to have some relief if this medicine actually does help out with our pain as well!!
620923 tn?1452919248

  TOPAMAX is used at times for weight loss...I was on it and had no such luck.....but I was not able to increase the dosage.....as I had other ill effects from it....The side effects of this med are usually during the first 2 weeks and then things calm down or we adjust to it....I know I wanted to stop the med b4 that time bcuz how it made me feel, but my Dr talked me into staying with it and it was amazing how u can get passed that awkward phase.

As for the Ketamine, that is often used as a recreational drug since it can be the cause of  hallucinogenic effects...and can cause one to feel detached.

Just reading side effect of Ketamine, I know it is not something I could possibly try... but I do hope if u do try it u have positive results.No way to know until someone tries it.

7489440 tn?1442011976
Well true that!! I tring Topamax again. I have refilled it it should be here today!! Though I don't think I will increase the dosage at all. I think I will stay with the 50 mgs. As I was doing better with the 50 instead of taking 100 mgs. So maybe I will have better luck this time around!

The K trial is suppose to be like the lidocaine drip. Or at least that is what was said to me. But we will never know if it will provide us with relief until one tries it. I talk to my friend who has cluster headaches and its being prescribed this has said it works well with ppl with clusters. So even though he has success with this med doesn't mean it will help us as they headaches are caused by other things, but I will have time to research it before I take it up with my NL and to the specialist when I visit him in may. I'm not going into something without knowing it all.

So if I decide to take it will keep the community posted. If it works for one it might work for others!
620923 tn?1452919248

  Glad to hear u will be trying the TOPAMAX again, I was only ever on .25mg's....and going up to 50 was too much for  me, but the 25 worked....we are all so different as to what may help....kinda makes me feel like a guinea pig each time I get a new RX....I wonder will I itch, sleep the day away, and just feel better???

I look forward to nething u find out on the K trial...
992677 tn?1537672503
I find this very interesting.... Funny how different chemicals react
with our different body chemistries.

For me, topamax turned me into a different person. I did not
even see or feel the difference. My wife and son have told me
I was like frankinstien on it, myself one moment and in another
world the next. My Pain Dr (see him for different reasons) just asked
me to try it for the CM symptoms was going to try again but he noted
the brain seizure I have and withdrew the suggestion. He said it does
not tend to work well with seizures. In 09 Dr ** gave it to for the seizures?

Glad to hear it helps some. Look forward to reading more on this thread.

Avatar universal
I was just diagnosed with Chiari a couple of months ago but have had migraines more than 10 yrs. The PRN med Fiorinal has worked great for me for most of those yrs.
Avatar universal
My spouse is the one that was recently diagnosed with chiari I malformation and has relied on OTC medications for pain control but apparently has been in agony since about age 2. We are exploring pain relief options but I wanted to suggest a few options just from knowing a little bit about the structural malformation and the symptoms my husband exhibits:
1. Chronic pain - studies show time and time again that chronic pain depletes neurotransmitters in the brain and leads to depression. Cymbalta is marketed for depression due to chronic pain and it is structurally similar to fluoxetine (Prozac). Another drug that actually makes more sense to use is NuCyNTA. It is a schedule 2 narcotic that works on the mu receptors in the brain for pain relief (similar to morphine's mechanism) but it ALSO increases norepinephrine (a commonly depleted neurotransmitter in depressed pts).  I have dispensed a lot in practice for other nerve pain disorders and have seen good pain relief with low rates of abuse. Wide range of doses and can be given twice daily or once daily (ER formulation). Might be something to consider
2. Inflammation - daily NSAIDS are okay but only if using the right formulation. Enteric coated naproxen 550mg is cheap, RX only, and protects your gut from bleed risk. Celebrex and  Mobic (meloxicam-cheap) are once daily options that help lower risk of bleed. All of the other OTC NSAIDS, if used chronically, are not worth the bleed risk. Get your MD to give u a good long acting enteric coated NSAID. Diclofenac XR is generic Voltaren and is available in a once daily formulation.
3. Non-drug options - ThermaCare heat wraps for the neck are a staple at our home. Helps keep muscles relaxed. The brand name ones get the hottest and last the longest IMO.
4. Lidocaine patches may be an option for patients who want to try them. Lidoderm just lost its patent so they are available in generic now. The neat thing is that they can be cut into smaller pieces that could be applied a little closer to the base of the skull so that may be helpful. Lidocaine (especially taken orally) can cause low blood pressure so monitor for that but the risk is low in the patch formulation
5. Vitamins - from my research it looks like almost all chiari pts need to be on a B-12 supplement as well as vitamin D supplement. Get those b-12 labs done because oral tablets are not easily absorbed and you may have to have the subcutaneous b-12 weekly or monthly to get your levels up to normal. B-12 deficiency can cause short term memory loss and it's an easy fix. They make a sublingual vit b-12 in 2500mcg liquid form that might absorb a little better. Vitamin D levels can be checked as well. If they are extremely low it can cause depressive symptoms and exacerbate nerve pain. OTC version comes in a max of 5000mg so get your levels checked before u start taking the wrong amount.
6. Muscle relaxants - if the muscle tension is indirectly causing chiari headache then trying different muscle relaxers is key. Some relax skeletal muscles better than others. Topical formulations can be specially compounded if your doctor orders them. This would reduce the drowsiness issues and allow you to function fairly normally during the day. Ask your doctor about compounding options. If they don't know then contact your local compounding pharmacy.
7. Drug interactions- chiari pts normally have reflux problems. If u are taking a PPI like Omeprazole for GERD take it on an empty stomach and check with your pharmacist about drug infractions. Stomach acid pH plays an important role in drug and food absorption and should be carefully examined by a drug expert.
8. Diamox (acetazolamide) - I haven't researched enough yet to have an opinion yet. To be continued.....
Hope this helps! Sorry that I got on a soapbox but I know that the information about this condition is very scattered and limited.
620923 tn?1452919248

  Hi and welcome to the Chiari forum.

Thanks for this list....how ever, no matter how strong the med may be, for many nothing helps....

May I ask, what meds ur DH uses and which ones help him...??
6150006 tn?1496083843
I have been taking 500mg Naproxen since surgery nearly 6 months ago.  I tried so many meds post op but have cut back now to the meds I was already on for spinal problems, plus the Naproxen.  I have HAs (headaches) every day, varying in intensity.  Today I have had a HA for over 24 hours, so I took a Maxalt as the pain feels like a migraine.
I saw a new Neurologist & she is switching me from Prozac to Effexor.  It is too soon to know if there will be any differences.
I have seen NeuroOpthamology.  No one knows what to do for me.  Now they say I have Central Vertigo, which is vertigo, balance problems, vision problems, etc that arises from the central nervous system rather than the inner ear.
Basically, I'm still healing from the surgery.  I am not getting worse daily as I was pre op.  I am finding my new normal.  I would still have the surgery if I had it to do over again.
I have no appetite or desire to eat.  My scalp is sore - really my hair is sore.  I forget everything, I tire very easily, I have to wear ear plugs in crowds, I hit myself & bump into things because of my vision.  I can no longer do anything for my husband who is a quadriplegic that involves lifting or pulling.
I am not complaining, just stating the way it is for me.  Maybe there is someone out there who has some or more of the issues I have that needs to know they are not alone.
This forum is my go to place to reassure myself I am not losing my mind.  There are a lot of weird things that can happen when dealing with the brain, the brain stem & the cerebellum that impacts the whole body.  Those of us here know this to be true.
620923 tn?1452919248

  Hi thanks for sharing ur story with us and what meds u have used successfully .

We all seem to find our "new" normal...since I am not sure I ever had an old one as it was ever changing with new symptoms....

May I ask, did they rule out other related conditions or a post op condition?
Avatar universal
Was given Maxalt last week. Says you can take every 2 hrs up to 3 times. And also says as a side effect, it can cause pressure in your chest & throat. I did ok the first 2 times cause I only needed it once per day. But on the day that I did need a 2nd dose in 2 hrs those symptoms did occur. I dont know about other ppl but it was awful for me! I couldnt breathe! I also suffer from anxiety attacks and thats exactly what it felt like but, of course, taking Xanax didnt help since it wasnt an attack. I even tried using my CPAP machine and still no help. I was miserable.
6150006 tn?1496083843
Yes.  I had a VNG, MRIs,etc.   the NS said the position of the tonsils was not fully revealed on the MRIs as compared to what he found at surgery.  Said it was significant & would account for the symptoms I was having.
This HA I have now is not getting better.  I am getting concerned & if no improvement overnight will need to contact someone, but who?  Neurologist, NS or PCP?
620923 tn?1452919248

  Hmmm well, start with calling ur NS and see what they suggest, most likely a NL as they DX conditions .....and it also depends on ur INS as to if u need a referral for a specialist....if so, then ur PCP.

Many times the NS's find the situation different then what appeared on a MRI or what could be seen when they get inside to operate...so that is not uncommon.....

  Keep in mind u r still healing and could be over doing it.....

Avatar universal
Thanks for the info. I am printing it out. :)
510038 tn?1489986629
Before surgery I tried various OTC pain meds (Tylenol, Aleve, etc), but the only that seemed to help me the most was Excedrin extra strength. It would take the edge off of my pain without any side effects (but I did have to take more than the recommended dosage).

With the 3 surgeries I've had so far I was given fentanyl via an IV pump while still in the hospital and it worked great for pain relief. It originally made me sleepy but after 3 surgeries I built up a little bit of a tolerance and it still helped with pain without making me as sleepy. Post-op I have been sent home with various combinations of oxycodone, valium, and hydrocodone. All work well for short term pain control, but oxycodone makes me sleepy.

Between some of my surgeries I was put on neurontin and tramadol to be taken 3x daily every day. The neurontin made my legs swell and caused them to be extra weak, so I had to wean off of it just because it was making me uncomfortable. I didn't notice that it particularly helped with my pain either, so I would avoid it just because of the way it affected me personally.

Now I don't take any pain meds on a regular basis - my body has just become used to dealing with the pain, which is good and bad at the same in my opinion. I do have some leftover tramadol, so if I'm having a particularly painful day I will take 2 50mg tramadols and it helps take the edge off.

In general I'm just not a fan of narcotics so I will take them only for as long as I feel that it's necessary. I'm also on a blood thinner at the moment, and I haven't taken any OTC pain meds since I started it to be on the safe side, so I'm not sure if any would touch the pain that I have now. Sometimes heat or ice will dull my pain enough without taking meds. I've been very fortunate to have a strong stomach, as none of the pain meds I've taken while battling Chiari have made me sick or nauseous.
620923 tn?1452919248

  Thanks to everyone that participated in this thread so far, I encourage more to do so as we will use info from this to create more Health Pages so all info is in one place...I do that will threads, polls and certain monthly topics as I am trying to get info that may help someone else as they come here new and in need of what to do next or try next....

Thanks again.
620923 tn?1452919248
Avatar universal
Today is July 24, 2015 and considering all the recent nsaid news, I am researching pain relief for various chronic pain. I found your post to be very helpful in many aspects. Thank you!
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