I've not taken anything since my neuro doesn't think my headaches and neurological symptoms are from chiari, but are cluster headaches. Ya, since when do cluster headaches cause dizzyness round the clock, weakness and tingling in hands and arms, etc?
I've heard that Diamox can help. It's a diuretic and will lessen the amount of spinal fluid and therefore pressure for some people. I've also heard of people using Topamax for HA.
Is your neuro a specialist in Chiari? I've learned the hard way. From now on I take my advice from a specialist who has devoted much of his life to studying Chiari Malformation. My local neuro also said all of my symptoms are migraine related. My symptoms at the time were: Seizures (spikes and waves on EEG, but could not capture seizure on EEG. those who witness these episodes said they looked like seizures),unable to use my arms without extreme pain, pressure and pain in head at base of head, lightning type jolts of pain in my head and eyes with temp. paralysis on one side of body (diagnosed TIA"s in the ER), etc..........
I'm sure you get the picture. He refused to even discuss my symptoms possibly being related to the Chiari on my MRI. I will never understand this. I paid this man a lot of money, ALOT!
I'm going to check into the diuretic, thank you. I have a lot of pressure in my head. At this moment, my top front teeth feel like they are about to pop out of my mouth.
Have you seen a specialist for your Chiari?
My Chiari doctor told me to stay about from Topamax when I mentioned it. The look on his face told me this medication is too risky. My cousin has Chiari and her neuro perscribed it for her. She did say it has helped with dizziness. I don't want to live on meds all my life. I would rather correct the problem than mask it.
Thank you for the info and good luck to you. Be your own advocate. If your symptoms persist, please see a specialist. There are many good Chiari Doctors around the globe.
I too hate to take meds. However, currently I have no options, other than surgery. I am taking (while kicking and screaming) Neurontin, Soma, Midrin and an occasional Lortab when pain is so bad I can't sleep. Can you imagine how I feel not wanting to take any meds. The Neurontin started out at 100 mg, then 300 mg, then 300 mg 3 times a day, now I am on 1200 mg. Last week the pain management doctor told me I could take 1200 mg 3 times a day. I said NO WAY could I ever tolerate that. So, I am to wondering where to draw the line. However, my issues are a little more complex. I don't have any neurosurgeons who agree on a treatment plan. I have to have 2 to agree, but I don't. One says I need herniated disc surgery and not the Chiari surgery. The next says I am a Chiari surgical candidate and would be crazy to let anyone touch my C-spine with my disc. I have one that says I have one bulging disc and one that says I have three. I have one that says PT messed up my neck and I have one that says traction would not have messed up my Chiari. There are 100 more factors that 4 neurosurgeons have disagreed on. They all agree my Chiari is at 8 mm. But done of them agree on where to go from here. I am thinking of going to Duke. I called and they told me there is a Chiari specialist there, but I can't find him on any list online. Therefore, I am unsure if I want to make the 4 hour drive or not. I don't know what another wishy washy answer would do to me. Therefore, as of today, I am taking all of my meds until I gain the courage to move forward. There are days when I say I can live with this...then there are days, almost every night, where I say there is no way I can continue this way. I have to be active with 4 daughters and a busy lifestyle. That is what makes all of this so hard. Anyway, I wish you luck on deciding what to do.
there really isn't an effective means of controlling the symptoms of chiari that i have found. unless, of course, you want to lock yourself in a cool, dark room with very faint, soothing music, nice smelling candles and a heating pad! kidding aside, the longer you wait to have the surgery, the worse your symptoms will become. you will also increase your risk of permenant nerve damage. but only you can decide when the time is right to have the surgery. and if you need 2 dr.s for insurance purposes, then go to 2 different cm specialist....you might be able to do this from one office.
best of luck!
If you don't mind me asking, what kind of doctors are the doctors who can't get on the same page. Are they all Chiari specialist or simply neurosurgeons?
It sounds like you have a lot of pain and when this is the case there are not many options other than taking something for the pain. Can I ask what kind of pain you have? Is it the headaches, or other?
My pain comes and goes and I'm very stubborn about taking pain pills. I suffer through the pain and now have a high tolerance for pain. I to have three kids to take care of and I do a lot of hiding my symptoms for their sake. I'm not saying this is the thing to do. It's simply dumb at times on my part. So my husband says:) I have to remember my pain affects him as well, even if it's in a different way.
I really pray you will find doctors who can agree on what is best for you. Have any one of them done a Cine-MRI? This would check the % of blockage (spinal fluid).
What kind of symptoms other than pain do you experience? I would think that a 8mm herniation is significant.
Oh. Elizabeth! I truly laughed out loud! Your method sounds really nice!
I hate pills too. Currently only taking bp meds & ibuprofen (Neurontin made me much too combative). I did invest $100 in a new pillow with a rounded side to it (do they call this a lumbar pillow? I forget.) Anyway, it definitely helps - I was on vacation for 10 days and didn't bring it because it's kinda heavy - I will never make that mistake again. By the end of the trip, on top of the "usual" pain, I ended up with stabbing pains in my neck. A regular pillow does not give enough support, and this one seems to hold my neck in a better position... it seems to distribute the pressure better. Sounds silly, but I'm sure you know every little piece of relief adds up at the end of the day.
Yes, this pillow is wonderful. I too left it behind on a recent trip and will never do that again.
I will tell you another trick that helps. When I have a lot of pressure and pain in the back of my head and neck I wear a hard neck collar for a few hours around the house.
A stranger with Chiari stopped at my house when she heard from someone I had Chiari and gave me this neck collar. My Chiari doctor gave me a soft collar, but it does not do the trick. Worth a try for some relief...
Yes, every little piece of relief adds up at the end of the day. Keep the natural alternatives coming!
I take Elavil 30 mg at night and that helped with my arm pain but i still get headaches that make me so sick i throw up and have to stay in bed. To keep them at bay i take ibuprofen and lortab. My doc rx'd Topamax but i'm not going to take it, too scared. I think I'm going to try diamox as recommended by tci but may have a contraindication to that too, i'm looking into it. Good luck to you and don't be afraid to take something as needed if you need it. They should be giving you something to take for when you just can't take it anymore, i know how draining it can be.
I'm not sure about the neurosurgeons being "Chiari specialist". I was told that the first one I went to was.(MUSC) However, I'm not too sure now. I can't find him or his facility listed on any of the provided list. Therefore I decided to go to another University Hospital in Georgia and he said he does so many Chiari surgeries he can't count and said that he also promises me he doesn't have to read a book on how to do this the night before. I believe that he is very familiar with Chiari and decompression surgeries in general. But, there again, I can't find him on a list anywhere. These two wonderful NS have totally opposite opinions. A local NS 30 minutes away who has a great reputation said my Chiari wasn't far enough down to cause any problems (it's an 8). His nurse told me off the record to go to a University with this diagnosis, that though this NS is a great one, no one local is specialized in Chiari. Symptoms that I have are Headaches and Migraines...all over. Though I have them at the back of my head, I also have them all over along with horrific eye pain. Upper neck pain that is chornic and unbearable at times. (this started after mechanical traction), Shoulder pain that radiates up into back of neck, left arm pain, numbness and tingling, ears ring 24/7 (this started during mechanical traction), facial numbness, tingling. (left side only), muscle spasms in face and eyes (started during medical traction), shooting nerve pain into head, chronic fatigue, state of fogginess, short term memory, muscle jerks in right leg (approximately 10 a day). Another symptoms I have is I can be sitting on the couch working on my laptop and the next thing I know an hour has passed and I have fallen over fast asleep. Almost a passing out type thing.
Treatment that I have had or testing include: EMG, NVS, lumbar puncture, mechanical traction, massage, and hands on PT, trigger injections into neck times 4 (painful), C-spine injections under fluroscopy, Tens unit, Neurontin, Zanaflex, Soma, Midrin, Treximet, Lortab at night prn.
I wish you all good luck. I have very frustrated and don't know what to do from here. Thinking about Duke University, but it is very frustrating to continue to get the run around. I called Duke and they claim to have a Chiari specialist. Dr. Sampson. However, I'm going to investigate a little further.
Can I ask where you live? I sent my MRI's to the Wisconsin Chiari Center and the Chiari Institute in New York. Chiari specialists will meet and view the MRI and let you know if an appointment would benefit you. I paid nothing for this. I decided to see Dr. Heffez at the Wisconsin Chiari Center because he is closer and has his own MRI protocol designed to get a very clear picture of the chiari. I recommend going on these web sites. You have to print and fill out a symptoms list and submit it with your MRI.
I learned the hard way. Most Neurologist who do not specialize in Chiari approach this diagnosis a whole lot different than a specialist does. I recommend finding a specialist who devotes all his time to Chiari Malformations and other related conditions. I wasted a lot of time and money before I realized this.
After all, sending your MRI discs to two very well know Centers can't hurt. If anything it will give you more feedback and it's only a stamp or two.
Have you ever been checked for syrinx? Or, had a Cine MRI to see if there is blockage of the CSF? I would think that 8mm herniation is significant, especially with your symptoms.
I did have a CINE MRI, somewhat. After I had it, both universities said I had some blockage. One said it flows up okay, but doesn't coming down the back side? If that makes sense. However, my neurologist in town, who is less than a mile from the hospital I had the CINE MRI at said that he highly doubted the hospital was capable of doing a good CINE MRI and said that he has never seen one done there. That worries me in itself. Then I read a description of what a CINE MRI is and how they monitor your heart or put something on your finger??? None of that was done to me. I probably need a good CINE MRI, but where? One NS at MUSC said I had a tiny dot which is the start of a syrinx...if I understood him correctly, but he said nothing to worry about. This is also the same NS who said to forget about my Chiari and let's fix my herniated disc for now. Bottom line is, I'm probably going to have to travel across several states to get to a good Chiari specialist. The Mayfield Clinic in Ohio received my records and CD's and told me they would review and call me with their opinion/options. However, that was not the case. They did review my information and CD's but said I needed to make an appointment to come in and see the doctor to see what he thinks. But, they refused to give me any information over the phone, even though their website stated that is what they would do. I went ahead and sent my information to Duke (I live in Upstate SC) and am waiting to hear back from them. My husband is from Pittsburgh, a huge Steeler fan, and I have read that there are a few Chiari specialist there. I am sure he would love to head up there, especially during football season. :o). Thanks so much for all of your input!
I am 17 and just found out I had ACM in May. I took Topimax from March-July. That was the worst medication I have ever been on. I lost nearly 22 pounds from it, I am now in the double digits. I still had headaches so the medicine was not really working. The side effects of the medicine are awful, it caused me to forget things, it affected the way I talk to people as I could not find the rite words to use sometimes. It got very frustrating to me as I am an A/B student and could not remember anything and spent hours writing papers that would take me just a few minutes. The medicine also makes any carbinated drink taste awful. My neurologist changed my medicine and put me on something else that is an antidepresent which causes me to have major mood swings and worse headaches then I did on Topimax. The doctor also gave me Midrin to take for severe migraines. After my first migraine, I began hallucinating and feeling things crawl on me so she took me off of that, so now I have no medicine to take when I have migraines because I am also severely allergic to asprin. I will be having surgery in November though so I can wait a little while. But, I looked at is as I do not want to spend my life on various medications with various side effects when I can have surgery and hopefully rid myself of this problem. But then again, I am also 17 and definately do not want to take many prescriptions at such a young age.
I'm sorry your dealing with this and trying to get through high school as well. Medications don't help me much with my headaches either. Do you have a lot of pressure in your head with your headaches? It seems a chiari headache is in a class of it's own.
Did you have problems finding your words before the medications? This problem is very common among chiari sufferers.
I took my son to meet his teacher today and in conversation with her, I could not get out what I was thinking in my head. I knew what I wanted to say, but the words come out twisted or just simply wrong. Or, I just don't remember how to say what I want to say. It made me very uncomfortable. I could have told her why I sounded like I needed to go back to 4th grade, but then I would have to explain Chiari once again.
You could ask your doctor about trying something all natural like fever few for migraines. I took this when I used to get migraines in my 20's and 30's. I would google it first and make sure you talk to your doctor about it since you may be on other meds and having surgery.
I too hate taking pills and yet my nightstand has become my own personal pharmacy. I was just recently diagnosed with CM1 and NOTHING helps relieve the pain, tingling and numbness, or the ability for my body to relax. I have tried the topomax (topamax) and to be completely honest it did nothing but make my headache 1000 times worse the next two days. Right now they have me prescribed to vicidun and soma and neither one do anything at all to even touch my pain or symptoms. I hope that you can find a doctor to help. I have been trying to research a different medicine to possibly relieve some pain but I've found nothing so far. I can't even remember the last time I slept more than 2 hours and it wasn't even good sleep. Has anyone had any luck with any pain medicine they could possibly recommend?
I just started the Topamax as well...and I was taking it for 2 weeks and I got a diff HA, and got very fatigued and brain fogged...some of the symptoms I had gotten rid of with surgery...and did not think this med was right for me...plus, it affect my IBS issues....
Well the dr said the change in HA's and the addition of them and other issues were an indication that the meds were working to change the etiology of the HA.
I forgot to take the meds after that dr visit and the next day I felt horrible...began the meds again and the brain fog was gone,as was the added fatigue....
Now that I am on the meds a month, my IBS issues r clearing up....just the last few days....
I deff see a diff, but this med u do need to allow a time of adjustment.
May I ask, do u have a chiari specialist to help u ?
I was diagnosed with Chiari I in 1998 when I was 30. My main symtoms (symptoms) were and are severe dizziness and brain fog.
For all these years, the symptoms were successfully treated with clonazepam 0.5 mg daily or as needed. Benzodiazepenes are vestibular suppressants.
I can highly recommend Chicago Dizziness and Hearing Clinic if you wish to be treated without surgery.
I am planning to get pregnant via IVF and cannot take clonazepam while pregnant. Since there is no way I can exist for 9 months without medication, I have scheduled a neurosurgery consultation next week.
Thank u so much for sharing ur experience with clonazepam ....not everyone's chiari will progress the same to where u may need surgery....and u should make sure u do not have a CSF blockage as it can be a detriment to ur health is left untreated...and meds can obscure what is going on.
We are always looking for new ways to treat chiari that have been successful for others: )
I have some experience with a lot of these medications. When I first had my surgery (it was 10 years ago) I was put on neurotin. I didnt really see effect. So my neurologist put me on Topomax (topamax). I have been on it ever since, probably 6-7 years. I have taken clonazepam, but my PCP didnt want me taking it too long because she said I could become addicted (I was 19 at the time).
I am not sure if you are still active on this forum, but I saw you mentioned a lumbar pillow, as did someone else.
What led to my diagnosis actually is night jolts now and then (awakening in a semi parasomnic state) & my inability to sleep on the left side of my head (I can't even tell if a habit of not doing so or real numbness anymore). I use the lighest pillow available at IKEA and let me tell you, there is NO support but it works for my scalp.
Now you guys have me wondering if I truly have occipital neuralgia and an asymptomatic chiari...
Anyone else with PILLOW advice? Or rather sensitive scalp on one side?
Hi was just Dx w/ Chiari and syringomylia, mine is also 8 mm long but I have mild symtoms (symptoms). Would love to talk w/ you about how u r doing since your last post in 2010, as I am also a mom of 3 busy kids and this is affecting our entire family. Not sure what to do from here.
Thank you, Susan 43 old mom of 3, married 17 years
The member u r replying to may no longer be an active member on this forum, since this is an older thread u may want to try and contact them via a PM(private message) which will generate a e-mail that someone is trying to make contact or post a new thread so current members will be more likely to respond.
There are many here waiting on surgery confirmation and those of us that have had surgery.....u r not alone and we will help u as best we can.
This is an older thread so Jenny may not be as active as when this was posted so u may want to send her a PM (private message) this will generate a e-mail that someone is trying to make contact.
As for the meds, I was on TOPAMAX and it does help reduce pressure and help with HA's....not knowing what ur issues are or what type of pressure u have ....u may want to create a new thread and give some details and mayb one of our members can offer some insight for u,.
I just wanted to say I think your questions are excellent! I find myself asking the same ones every day.... I have reactions to meds too and agree that it's not the answer. I can tell you that PT helped a bit and I am considering a nerve block. Motrin 800 takes the edge off SOMETIMES along with laying down. Ultimately however, I know I need the surgery to correct the problem. I'm working on getting there mentally and I know you are too. Funny how we know what we need deep down. Good luck to you, I hope you feel better soon. I hope and pray we ALL feel much better soon :-) Lisa
Hi,,,,this is an older thread and the member u r addressing is no longer an active member, u can try to PM (private message) her as it will generate an email informing her someone was trying to make contact.
The neurologist I saw originally before consulting with a Neurosurgeon here in Toronto suggested small dose of Neotriptalyne (spelling?). Reviews are great but so are the side effects so I stuck to homeopathy hoping to fix migraines I get biweekly.
However, my head pressure has been so chronic that I would love to tye Diamox/Topamax but the Neurosurgeon said in his experience these meds are not a good solution/do little.
I think I mentioned somewhere on the forum that I had to change family doctors to get an MRI. I saw a neurologist through ER but he only tested my foot/hand nerves and assumed I have migraines. I was told to stick to advil for episodic migraines. Sigh.
Then I found a headache specialist (neurologist title) in Toronto that I feel comfortable with and she advised high doses of B2 and Magnesium (400mg/ea) for 3 months before we consider triptans etc. 1-2 advils works for my migraines still.
In the meantime, I started seeing a good homeopath in Toronto as well and I see a difference in my migraines frequency already. However, the head pressure and stabbing remain chronic and daily with maybe 5 pain free days a month.
The original ER neurologist for a report of my MRI at my request (that the new family doctor issued) and suggested Neotryptaline (sp?) at small doses for my chiari chronic pain and migraine management/prevention. I read that it works great but fluid retention and inability to urinate are frequent side effects so NO thanks. It's already hard enough looking lean without lifting weights...
Now, the neurosurgeon I saw is the one who does not think medication is the answer in my case. I do respect his advice as I asked for medication that would affect my obstructed flow (like Diamox) rather than pain masking anti-depressants (a bit against them due to side effects and long term effects, no hard feelings anyone)...
Finally, no decompression... just 12mm herniation with 1 year of symptoms limited to occipital head pain, head pressure especially few hours after waking up (neurosurgeon is convinced it is not a CFS leak although I did suspect it at times given the PM head pressure) and eye floaters and pulling sensation + frequent migraines.
I did complain of sinus pain for years but other than that was a perfectly happy young adult, sigh. Weight lifting initiated this for me FYI... I got really fit... Wasn't worth it..
I wonder about Topamax. I will google it. I am seeing the neurologist I decided to stick with beg of August who will go over Neurosurgeon's report so I will ask her re Topamax... I read stuff re Cannabis too but I never touched that stuff before and I am so scared... I will let you know what my spinal MRI shows (hopefully nothing Lol... I don't even know if this is a lol-ing matter but hey) in September.
I see these post are a few years old. But it took me 7 neuro surgeons out of those 7 i believe it was 3 saying I needed the arnold chiari surgery. At the age of 36 I finally took the advice of the most amazing neurosurgeon had the surgery yea it was a had recovery but Im doing much better. I do still have the headaches which now after many different ones my pain management doc is trying me on topamax im very nervous I also had many other surgeries with the same neurosurgeon on my spine. I have ddd all the way down my spine. I love my surgeon he is an amazing guy. I have some memory loss from the surgery but doing much better. I never knew I had this rare disease until i had an aneurysm repair at 32 in my internal iialic atertary when I couldnt walk very well they did an mri from the brain down found i had arnold chiari and ddd all the way down. Havent worked since is the only down fall. Do research alot of it on the surgeons
Thanks for sharing a part of ur Chiari journey....I am happy to hear the surgery was a benefit to u......
Surgery is not meant as a cure and is not expected to relieve ALL our symptoms....so it is important to know that going in as well as ALL related conditions u may have which may also cause the same symptoms to continue post op.
As for Chiari being rare, with that I take objection....it is not rare, but well informed and experienced Drs are rare. I agree we need to research the Drs we see ....and to help we do have a list of Drs the members have been to and liked....(see Health Pages)
And TOPAMAX can be beneficial....it has some possible side effects like all meds, but it also has an adjustment period.....2 weeks to get it into ur system and adjusted, during that time u may feel extremely fatigued , foggy....but it does go away....it also depends on the dosage....we are all different in how we respond to meds and I feel I did benefit from using this med.
I too have this condition. Started as numbness in fingers. Eventually I was prescribed Percocet and Oxy. I weighed a whopping 105lb and was literally being prescribed every 15 days 120 perc 10 and 180 30mg Oxy! Since my Dr. said to take it..I did...I was physically addicted to a point I didn't even know if the pain was still present. I quit cold turkey..and called my Dr and told him to send me all my records bc I no longer wanted to be his patient. I still don't know what the heck he got out of it. It was HARD to stop the meds..VERY VERY HARD. But thankfully I have not had ANY pain..(from condition) since and its been about 4 years. Food luck to all of you. Its always int he back of my head if the pain will return..but as for now...IM HAPPY! I hope you all find relief and if it is with meds..just be careful!! xoxoxo Peace and Love
Hello. My daughter is 6 and was recently diagnosed with CM. I am reading your posts and I want to ask you whether you wish you'd been diagnosed early and gone through surgery as a child. I am so scared to begin the process of neurosurgery on her tiny body but I would be so grateful to avoid migraines, meds, family stress and the other things you have had to go through. This is not a condition I had ever heard of and I want to learn all that I can in order to make an informed decision on her behalf. Please share your thoughts with me if you're up to it. Thank you all and best of luck finding the relief you all deserve. Blessings
It is not if I had been DX'd as a child if I would have required surgery then....we are all different and some may go longer periods without surgery.
May I ask what symptoms she is having and what testing was done.....I was 48 when I got a DX...but I did try to get a DX for as long as I could remember.....my surgery was 5 yrs ago...and I do not regret it.....but not sure I would have required surgery when I was younger....
Do not rush into surgery...find a true Chiari specialist, rule out ALL related conditions....and have more testing to see just how her Chiari is affecting her and her overall health.
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