This is my first post, but I have read many from all of you, trying to get a handle on this situation.
I have had cough headaches for as long as I can remember. In fact, I thought everyone did! They have taken a dramatic turn for the worse lately, however. I am wondering if the sudden change could be tied to new medications. Since April, I have been taking topomax to control seizures (which I am assured can have nothing to do with Chiari).
Has anyone else found that certain medications affect severity of symptoms? I have always believed that there is no such thing as coincidence and an awful lot seems to be going south all of a sudden here!
Gammy, this is tough call. Chiari symptoms are notorious for sudden, rapid increase. However lots of people have some big side effects from the meds, including topomax. Has it helped your seizures?
Thanks for the reply, jcdemar. Yes, the topomax has completely controlled the seizures and it is an incredible relief to be seizure free after several years of struggling to figure them out. The headaches, however, have gone from merely annoying to excruciating in a very short period of time and I want to be sure I have considered all possible causes. I am researching the drug and the headaches and trying to learn all I can about Chiari so that I can be an informed patient. My doctor feels it is time to consult a neurosurgeon and I want to go in with a good knowledge base.
You are doing the right thing by getting all the info you can before going to a NS. if you go there just please see NSs who specialize in chiari:) I’m so sorry you’ve got the ch-headache, it’s just awful! Please keep us posted on what find out about topomax and the headache.
I am sorry you are having increased symptoms. I couldn't take Topomax maybe you should ask your Dr. to change it to something else. I take Fioricet, which is an older medication for headaches and don't have any side effects at all & it works well. Amitriptylene also works well for me,but I have to take it at night. It makes me very sleepy. There are many alternative medications to Topomax for headaches and seizures. Different medications work better for each person. I hope your Dr. comes up with a solution to reduce your headaches. I have them daily and after they become really bad you can't even think.
My neice has CM1 and seizures. Upon her first decompression the seizures stopped. The doctors told my sister that the surgery would not fix the seizures as well, but wallaa! Post op the seizures were in fact gone… just something to ponder.
I find your problem very interesting in that I have found that particular pain meds ,although at first helpful,after a period of time actually cause more problems eg, more severe muscle contractions.I then found that interchanging between them the only way to solve this.I would love not to take anything but the headaches and body pain are too great to handle.I hope this helps but I find that ,for me, "mind drugs" like Amitriptylene,give me more problems.We are all so much the same, but then,very different.
Thank you all for your thoughtful responses. I am finding this a very isolating situation that even my family doesn’t quite understand. It is so good to talk to people who get it!
Pebbles, I have been secretly hoping that a decompression would affect the seizures, even though the doctors are adamant that there is no connection between the two conditions. There is so much that is unknown about Chiari, though, that I continue to hope.
A couple of people mentioned finding a neurosurgeon with Chiari expertise. The frustration there is that I live in Cincinnati, mere miles from Mayfield Chiari Center, and it is out-of-network for my insurance. So the hunt for a surgeon goes on.
Again, thanks for your input! I appreciate your help and advice.
Duke University has been excellent for my Neice in Carolina. Aren't there Chiari Institutes in Wisconsin and New York? I had to go to another state for treatment, out of network as well.
Sometimes insurance companies will make network exceptions if you can not find the right specialist in your home area. You have to get a referral to the Dr you want and call the insurance company to ask for the exception. Sometimes it helps to explain the situation. If that fails call your States insurance commissioner for advise on how to obtain proper in network care. Be sure to tell your insurance company you are going to do this as they may work with you for a feasible exception.
I know it's costly and time consuming but the validation I got from the Denver Institute was worth every dollar. Their initial 3 days of appointments cost about $900 (you see 3 drs including the neurosurgeon). Additional testing is a additional charge. May not be as out of reach as you would have thought. Worth every dime! There is an organization you can try for help with travel, please message me privately if you are interested in this info.
Good luck and remember to push forward. If you stop looking for alternatives you will never find one.
My daughter takes topamax for her headaches and she has stayed fairly stable for the past year a few new chiari symptoms but not bad enough for surgery yet .
Hello. I myself have the bad headaches. I cant even get ecited anymore. And i had surgery. I am starting migraine meds just this week. I dont want to have to take anything. I also have a constant acupuncture rutine that has managed a lot of MY symptoms. Most the time people dont know im just a “crazy retard” i mean that very light spirited, but in all seriousness im pretty crazy and feel retarded most the time too. Our pain is Partly caused by blood stagnation- acupuncture helps the body IN A WHOLE function without a build up of Pain. I have my head treated scalp to neck and scar and shoulders. The first time i got “poked” in the top of my shoulders the relief was very intense. Like i stubbed my toe. That was april this year and i missed going lately from being sick is why i am trying . I really really try to avoid the meds. I dont have to work regularly either fortunately.
, I was just reading your reply and I am faced with trying to find a new Chiari specialist.
I am on Disability and a Single Mom so we are on a very tight budget. Would you be willing to email me the info about financial help with travel?
My symptoms have really been increasing also and it's really starting to scare me.. My Chiari headaches are unmanageable, my vision on the right side has decreased greatly, problems with speech and memory just to list a few..
Thank you ,
Debbie
pebbles said:
Duke University has been excellent for my Neice in Carolina. Aren't there Chiari Institutes in Wisconsin and New York? I had to go to another state for treatment, out of network as well.
Sometimes insurance companies will make network exceptions if you can not find the right specialist in your home area. You have to get a referral to the Dr you want and call the insurance company to ask for the exception. Sometimes it helps to explain the situation. If that fails call your States insurance commissioner for advise on how to obtain proper in network care. Be sure to tell your insurance company you are going to do this as they may work with you for a feasible exception.
I know it's costly and time consuming but the validation I got from the Denver Institute was worth every dollar. Their initial 3 days of appointments cost about $900 (you see 3 drs including the neurosurgeon). Additional testing is a additional charge. May not be as out of reach as you would have thought. Worth every dime! There is an organization you can try for help with travel, please message me privately if you are interested in this info.
Good luck and remember to push forward. If you stop looking for alternatives you will never find one.
My first suggestion is to have an eye Dr look at the pressure in your eyes, they need to specifically check for elevation and paplioedema (not sure of spelling). They can sometimes see if there has been recent increased intracranial pressure. You can message me privately for the organization who helps for travel.
They eye Dr I can get done up here where I live, I never thought about that..
My mind is a total fog right now, I am grateful for the help sometimes just hearing one Idea can be such a Blessing!
I will send you a private message too.
Hope you're having a great Monday!
pebbles said:
My first suggestion is to have an eye Dr look at the pressure in your eyes, they need to specifically check for elevation and paplioedema (not sure of spelling). They can sometimes see if there has been recent increased intracranial pressure. You can message me privately for the organization who helps for travel.
Tammy, I have chiari (7mm herniation), a syrinx and scoliosis with drop attacks and painful symptoms and I am taking Topamax also (5th day so far). Don't like it very much but I'm going to give it some time. Anyway, I was just reading about Topamax last night for a different reason and I do recall a few people who had this complaint. They were taking Topamax because they suffer from migraines (no chiari malformation was mentioned). They stopped taking Topamax just a few days after they started because they experienced a headache like none they'd ever had before. The headache (which had continued the entire time they were on Topamax) went away after they stopped the medication. My friend is on Topamax for her seizures and is doing just fine. It affects each person differently. I agree with the suggestion that you try something else for your seizures that gets it under control and see if you still have the same problem with the headaches.
By the way, my friend was telling me about her friend's daughter who was having seizures that stopped once she had the decompression surgery.