Neurologist wants to add a medication for migraine to other psychiatric-prescribed medications

Discussion in 'General Parenting' started by ChiefDramatist, May 6, 2015.

  1. ChiefDramatist

    ChiefDramatist New Member

    My 11 year old has suffered from migraine since she was 5. She was diagnosed right away by a pediatric neurologist. Both me and my mom had child-onset migraine. They have been steady since she was that age... About 1 every two months. In the past few months, though, they have increased in both frequency and strength. I took her to her neurologist, who decided to prescribe topiramate (topimax). It's primary uses are as an anti-convulsive and migraine inhibitor. It is also used for bipolar (one of my daughter's diagnoses).

    I ran this by her psychiatrist, and psychiatric saw that it would very possibly be helpful, but will likely cause "cognitive dulling."

    Her bipolar swings have been really ramping up -- increasingly violent and physical (throwing small furniture like chairs and stools, hitting me, tearing my clothing, etc... (There was a prior thread about this topic). Both docs say the topimax might help, but I really hate the idea of "cognitive dulling." On one hand, the migraines are horrid! She throws up for hours, her headaches throb, and she is in misery about once every ten days. Conversely, she is basically non-functioning without her psychiatric medications, which are already "dulling" her intellect (she was seriously bright before her diagnosis at 7). Now she just struggles in school. Not failing, but definitely struggles... And her confidence is poor.

    Any advice?
    Any experience with Topimax? (Other medications are Abilify, Zoloft, and Quetiapine)

    PS, I'm working on my iPad using the Conduct Disorders forum app, and don't see my "signature" info. Daughter is 11, bipolar, Obsessive Compulsive Disorder (OCD), anxiety; medications are abilfy, Zoloft, and Quetiapine. Have another daughter who is 9, and depressed, but not medicated. Husband is deployed.
     
    Last edited: May 6, 2015
  2. Wiped Out

    Wiped Out Well-Known Member Staff Member

    My son was on Topomax for quite awhile. It is a mood stabilizer (which it didn't work so well for) and also helps with migraines. He had horrible stomach migraines, would throw up for hours. This stopped them! We didn't really notice the cognitive dulling but it is a possibility.
     
  3. JackBeNimble

    JackBeNimble New Member

    I have had severe migraines since I was twenty due to an accident. At times I've had to go to a Chiropractor three times a week. While lying on a bench receiving heat therapy I've watched the doctor perform his magic on many children including very small babies. One time a distraught mother almost in tears came in with a screaming baby of around four months. She explained she was at her wit's end and had gone without sleep for days as her baby kept crying. The doctor took the baby from her mother's arms before she had even finished explaining and he realigned the baby's spine. Instantly the baby stopped crying and she was smiling and cooing at the doctor. The mother was shocked and cried in the doctor's arms thanking him over and over. The doctor explained that many children suffer from misaligned spines that end up damaging their nerves. Some babies are born with this problem as a result of child birth and others fall when they are playing. Unfortunately the medical profession doesn't ever think of this and the child continues to suffer. Understand that the Chiropractors of today are much better trained unlike the ones in the past.

    I went to many neurosurgeons and was told it was all in my head. The last one that told me it all in my head I warned him if he said that again that I'd break his jaw. I was to the point of throwing up and having blurred vision one Easter Sunday in 1975. Lucky for me my grandmother came to visit and she called up her chiropractor and he told her to bring me to his office. He not only straightened my spine but showed me how to to snap my vertebrae back into place which instantly stopped my migraine headache. I have to put the vertebrae back in place many times a day and without the knowledge of how to do it I would not have had a normal life. I now take Etodolac which helps with the inflammation which causes the vertebrae to pop out pinching my nerves.

    I really hope you at least have your child checked out and if the doctor finds a problem give him the time and number of visits to make her well. A damaged spinal system takes time to fix as the muscles have adjusted over a long period of time to a misalignment. Surgery may be an option but make it your very last option. I have been told that I only have a 50% chance of surviving surgery and even if I did I would possibly end up paralyzed from the neck down. It has taken me decades to determine exactly what is wrong with my spine but now that I'm 66 years old I won't be taking the chance on an operation. The problem is very difficult to detect and is usually the result of an accident or can even be a condition from birth. The condition is a weakness in the spine that under certain conditions bulges out. This is not to be confused with a herniated disk but is the spinal cord itself. Many doctors are unaware of the condition and I found out about it from a woman that had been in a car accident. She luckily had a MRI at the exact time her spine was bulging and she had a successful operation to fix it. Without the MRI I was told a hospital would refuse the operation due to the high risk. I hope and wish you luck with your daughter.
     
  4. JackBeNimble

    JackBeNimble New Member

    If you give her a NSAID such as aspirin or Ibuprofen and have her relax by laying down on a bed and her headache improves she most likely has a misaligned spine. Generally the vertebrae that make up the spine when misaligned has pressure on only one small point of the affected vertebrae. Overtime this can lead to injury of the bone and the disk between the vertebrae. If this also puts pressure on a nerve the result can be pain in a leg, arm or even constipation. I've watched many adults have to run to the bathroom after the doctor aligned their spine. The first time that I went to my current Chiropractor he took x-rays and examined my whole spine. He told me everything that was wrong with me and he was exactly correct. I was amazed at the accuracy of his examination. Good Luck, JohnnyB
     
  5. JackBeNimble

    JackBeNimble New Member

    One more reason for migraines is a condition my sister had which is called an AVM. As the result of a stroke she had a MRI and it showed a ball of blood vessels on one side front of her brain. The blood vessels were entangled around each other and it was leaking blood. She had an immediate operation where they used gamma rays to kill the wild growth of blood vessels. A man where I used to work had the same condition in his spine rendering him paralyzed from the waist down. He was diagnosed having polio as a young teen and had lived his life in a wheel chair. Only an MRI showed the real reason for his condition forty years later. Remember that doctors are human and they make mistakes. I spent almost thirty years of my life in a small town outside a small city in Pennsylvania. I had a skin condition and was diagnosed by two dermatologist as having Psoriasis. I moved 700 miles to a large city and found another Dermatologist. He gave me medication that eliminated the problem in three days because I had a fungus that caused Para-Psoriasis. He told me that whoever told me that I had Psoriasis was an idiot as I did not have all the symptoms. He added that it was basic knowledge for any Dermatologist worth their salt. Understand that the best of the best doctors are not in small cities and the best are near the colleges that train doctors.

    The ones out in the sticks don't keep up with the latest technology and they more likely received their degree from a small college. I have also found absolute butchers practicing medicine so do a through evaluation of any and all doctors before having them do anything. Find out where he/she received their degrees. Just like there are bad auto mechanics that were absent on lug nut tightening day resulting in your cars tire falling off the same is true with doctors. If you are in a rural area and far from a large city all I can say from my experiences is God help you. I believe the bottom tier of the small college graduates end up there to practice medicine because they can't compete with the top tier doctors that practice medicine at the best hospitals near a more populated area. I would have died twenty years ago if I stayed where I originally grew up and lived for 43 years. I suffer from conditions today because of bad doctoring from that awful place. I would never even think of going back even though my relatives and many friends live there.

    It makes me sad to learn of a young child having to go through the same thing that I endured for 45 years. Please know that there is an answer to her condition and it may take some time to find. Unfortunately doctors always have some pill they want to prescribe. If they can't find the exact cause they treat a possible cause without having any evidence. The pill may be doing the patient more harm than good. As I suggested before it would be best to start a diary and write down everything. I have food allergies that can give me very bad headaches so write down everything that she eats or drink. Perfume also gives me bad headaches and that is true with all my brothers and sisters. Anything like air fresheners, household cleaners, laundry soap, shampoo and hand soap just to name a few items. Basically some of us don't do well in the modern world and survive the best living without all the "stuff" in our lives making us sick. I have heard of families being allergic to food additives such as the chemicals they add to keep the food fresh. Don't count anything out as the culprit of her condition as she may be allergic to almost anything or a combination of things. According to allergy test I'm not allergic to anything which is incorrect. I'm allergic to things in combination so I stay away from unnecessary foods. Nutmeg for example is a poison that in small quantities is harmless to humans. The question is it harmless to me. I have enough problems and so I avoid eating anything with nutmeg in it.

    You and your daughter must take an active roll and don't rely on doctors to find the cure. Understand that the very food you're are feeding her and the very house that you provide her may be what is hurting her. I have a good friend that literally emptied his whole house including the carpets and furniture on the advice of a doctor treating his son. His son went never had a problem after that decision. So you may have to do something similar and may be also change her diet to all natural foods with zero additives.

    I wish you luck,

    JohnnyB
     
  6. Nomad

    Nomad Well-Known Member

    I've taken Topamax for years for migraines. It has caused cognitive dulling. I settled on a low dosage. The dulling, especially at higher dosages, caused me to be depressed and then I had two problems. It was worth it to me to take a lower dosage, less dulling and some migraines. I'm ok with allowing some migraines to come through, but not ok with lots of that dulling. I take an OTC supplement called ps 100 that helps with dulling, but I'm very unsure if it's ok for children to take that supplement. Bottom line is Topamax is a great and helpful medication for migraines, but in my humble opinion, proceed with caution and again in my humble opinion most people should take the min. dosage to get some help....for me it is a tricky thing requiring thought and balance.
     
  7. Confused

    Confused Active Member

    I can't add anything nor have I experienced what you all are going through. I just wanted to say you in my thoughts and hoping for something that will help. Many hugs
     
  8. ChiefDramatist

    ChiefDramatist New Member

    Update:

    She's been on the medication for a couple of months now. While she had a couple of migraines right as she went on it, she is currently in the longest stretch without having one! Five weeks! We are even under a TON of pressure right now, staying with grandparents who don't really understand mental health issues anyway (everything is a behavior issue, I'm not being consistent with discipline, etc... That's a whole other thread, though. Ugh.) Anyway, I think it is working. I DO think it is something environmental, though. I know a few triggers: playing in the heat coupled with dehydration, red Twizzlers/Red Vines (no surprise there), and theatre movies (big bummer for her... She loves going to the movies. TV is fine.)

    Thanks for all of the suggestions. I wish that one of her doctors who suggest an MRI. Not once since her either her migraine or mental health diagnoses has a physician suggested any sort of brain scan.

    Edited to add:
    Neither I, nor her teachers, have noticed any further cognitive dulling. Her final report card came out for fifth grade, and she did the best she has EVER done since the onset. She actually got a C+ (almost B-) in math, which is amazing for her! I am so proud!!
     
  9. Wiped Out

    Wiped Out Well-Known Member Staff Member

    So glad it is helping!!!
     
  10. GoingNorth

    GoingNorth Crazy Cat Lady

    I take propranolol (old time beta blocker) and topomax for migraine prevention and have found the combo to be VERY effective. I have noticed some dulling from the topomax, mostly it has cause "word finding" issues and has impacted my writing and typing to a degree (mostly I leave words out or substitute words).

    The relief I'm experiencing is well worth the side effects. in my opinion.
     
  11. dstc_99

    dstc_99 Well-Known Member

    I have a hard time with movies, fire works, and basically anything I have to look up at for a while. Try sitting in the very back against the wall and wearing light hearing protection. It works for me most of the time.
     
  12. susiestar

    susiestar Roll With It

    I am really glad your daughter has been so helped by the topomax. I hate that she suffers from migraines. I was diagnosed at age 4, my oldest child was at age 2, my daughter at age 4, and my youngest child at age 6. I know how hard it is to watch your child suffer and feel you have no way to help. If I had my way, no parent would EVER be suffer that again because no one would ever have a migraine again.

    I read the very long posts above by JackBeNimble (JBN) and caution you about some of what he says. There are good and bad docs everywhere, not just good docs in the city and bad docs in the small towns. You DO have to be very active AND very proactive in your daughter's care. Not just her migraine care, ALL her care. You absolutely, positively MUST ALWAYS listen to your instincts. From personal experience, the times I made the worst mistakes with my children, the times they got hurt the most, were times I ignored my instincts. I do my total best to not let that happen again. Even if that means arguing with them as 2 of them are now adults.

    If your daughter has had several years of chronic migraines and she is on topomax, it is not unreasonable to ask for an MRI. If you feel it would give you some answers, go ahead and ask your doctor for one. If he says no, ask him why? Tell him you want to rule out a structural cause and any other issues and that it is important to you. I think it is a reasonable request, but he may have reasons for not ordering one. if it is your insurance co, be prepared to argue with them. That is a whole other discussion.

    As far as your daughter's spine, I don't know many people who go complete help from a chiro for migraines. It can help but it carries risks, esp for kids. The adjustments, if done incorrectly, can cause serious harm. If done properly, they can truly help in some situations. I have seen excellent and atrocious chiros. I laughed my way out of the office of one of the bad ones because his claims were so nutty. I have left other offices because nothing can cure everything. I did have 2 excellent chiros keep me migraine free or very close for a period of about 4 years total, shortly after I saw the last one the last time, I learned that I had a herniated disc and that it couldn't be fixed with nonsurgical methods. I learned that this was why the chiro stopped treating me - he couldn't stop the migraines or fix the problems I was having and realized that he could be a cause of the problem. I personally do NOT think he caused the problem and neither do my surgeons. I have something wrong with my bones and problems are simply going to happen and all the bone docs can o is scratch their heads. This problem caused the disc rupture, not the chiro.

    He was the 2nd chiro to help keep me migraine free for a period of time. I took my kids in for chiro for migraines and it didn't help as their bodies were still growing and it was nto the solution fr any of them. For each of us it was a very expensive solution as insurance didn't cover much of it. Most chiros that seem trustworthy to me say that it MAY help a child but it is hard to tell ahead of time and it can be very expensive.

    Medical treatment of migraines is complex. It should include several things. One thing is a diet adjustment. Food can trigger migraines and some foods are strong triggers. Your daughter needs to follow a migraine diet an avoid certain foods. In time she can try them 1 at a time to see if they are actually triggers. she also needs to write down all the foods she eats s that you can find out if it is a trigger. MSG is one of the most common triggers and is in a LOT of processed foods, even now, s you nee to learn more about it and try to avoid it.
    artificial colors and preservatives may also be triggers. It takes some time, but you can easily learn to cook without any of these by making your own mixes, which is super easy and takes WAY less time than you would thing - an it tastes soooo much better too!

    As you figure out her triggers, and smells can be huge - no one in my family can wear scented anything, not even deodorant, because it gives me bad migraine and makes me vomit - you can work with the doctor on medications for her migraines. Medication approaches should be 2 pronged. First is acute treatment to deal with the pain of a migraine. Triptans are the best if you find one that works for you because they make the entire thing go away. My daughter thinks that even with the side effects they are well worth it. so do my sons. There are more than 1-2 triptans out there, so look at lists on google an ask to try them.

    I want to discuss preventatives more, but my own migraine is getting bad, so I will continue this later if you don't mind. Sorry about the spelling and typos, I am having a hard time with my hands.
     
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