Hi, my name is Kate, and I have PCS....
 

Hi everyone,

I'm a 29 year old, married, mother of 2. I was diagnosed with Post Concussion Syndrome about 3 months ago. I fell and hit my head and have not gotten over the symptoms since. I wake up every morning feeling like I haven't slept at all. I have a headache, nausea, dizziness, unsteadiness, and a lack of focus. All of these symptoms become worse with increased activity. I get irritated and frustrated easily. I have had every test under the sun: CT with and without contrast, MRI, EEG, ABG, Xrays, bloodwork, and they have all come out negative.

I see a neurologist every 2-3 weeks and he tries to treat some of my symptoms with new meds every time i see him. I started Nuvigil yesterday to try and combat my fatigue. I am also taking an antidepressant at night for sleep, Amitryptyline, and I take Treximet when my headaches become migraines (3-4 times a week when I overdo it). My neuro tried putting me on Topamax to try and prevent the migraines, but it made me so tired that couldn't move off the couch.

The Treximet works fantastically, and I have gotten used to the side effects (feeling like I'm having a heart attack). It's great to know that if I do get a migraine, I can at least treat it effectively. It's all the other symptoms that are tough. I am not able to drive or work, and feel quite cut off from the world.

I could use some support from people who understand what I'm going through. My husband is wonderful, but there is no way he can really understand what's going on.

I'm also struggling, because about a month ago I had an episode where my left leg and arm became very weak and heavy. I went to the hospital thinking it was a stroke, and ended up also having issues with having to breathe manually. I was not breathing automatically, so every time I would fall asleep, I would stop breathing and they would wake me up before my pulse stopped. After 3 days, all my symptoms were gone. I was discharged with no answers.

I know 3 months isn't really that long to be struggling with something, but I am normally a very active person. My kids are 5 and 7 years old and it's tough to keep saying, "Mommy's too tired". Thanks for listening!

PCS Mommies
 

Greeting Kate,

I sustained a serious brain injury in a car accident over two years ago and continue to struggle with many of the symptoms you mentioned. Like you, I also have a young family and know all too well the pain of having to tell your child that you’re too tired to do things.

In fact, it’s the impact of the injury on my daughter that causes me the most distress. I am pretty stoical, but I have broken down weeping after seeing the disappointment in her little face when I told her it’s too dangerous for me to take her skiing or I just don’t have the energy for a tea party. I also hate myself when my explosions of temper make her cry. Yes, I understand what you’re going through. However, as I’ve been traveling this road a bit longer, I’ve also learned a few things that might help you.

Firstly, it’s probably best to be completely honest with your kids about what has happened and how it is impacting your behavior. My daughter is very young, but she understands what the frontal lobe does. I know it seems like heavy stuff for a child – but isn’t it better than fearing your mother had become some sort of unpredictable mad woman?

Secondly, be assured, that even on your worst day, your children know that you love them.

On the medical front, the frequency of your visits suggests that you have an attentive neurologist. You’re lucky. As a mommy, I recognize the delicate balance you’re struggling to maintain between controlling your pain and being mentally present for your children. It’s seems you’re besting me with that juggling act.

As for the testing, it’s not that unusual for standard scans to be less than perfect tools for diagnosing brain injury. (I can give you the technical song and dance if you like.) Neuro-psychological testing can be a much more useful tool for revealing actual brain function. If you haven’t had a neuro-psych, I would strongly suggest that you consider it.

A brain injury can be a confusing, frustrating and even life-altering event. Is it surprising that our loved ones have trouble understanding what’s happening to us, when we’re often bewildered ourselves? It’s good that you’ve recognized your need for support and are reaching out. Here at NT you will find many people who understand how you’re feeling and some with almost encyclopedic knowledge of TBI symptoms, medications and treatments.

If you haven’t already done so, I’d suggest you visit the Brain Injury Association of America webpage www.biausa.org It’s an excellent source of information that might prove useful to you and your husband.

BIAUSA has a New York State Chapter:
BIA of New York State
President: Marie Cavallo, Ph.D.
Executive Director: Judy Avner
10 Colvin Avenue
Albany, NY 12206-1242
Phone: 518-459-7911
In State Toll Free: 800-228-8201
Fax: 518-482-5285
E-mail: info@bianys.org
Website: www.bianys.org

If you contact them, I’m pretty sure that you will find brain injury support groups meeting in Buffalo. Brain injury can be scarey and isolating so I’d recommend joining one.

Again, welcome to NT and feel free to Private Message me if I can be of any help.

Rest and Get Well
p.s. The Sabres, eh? Did you become a fan before or after you hit your head?;)

Hi Hockey,

Yes- I am a huge Sabres fan and have been for about 10 years. Let's go Buf-a-lo! Preseason starts next Thursday!

Anyway... Thank you for your warm welcome. I am really appreciating being able to share with others who get what I'm going through. After your post, I was immediately moved to speak with both of my children. I asked them if they knew why Mommy was tired and cranky sometimes, and they both knew it was because I had hit my head. I guess my hubby has covered all of that with them. He's really been amazing! I told them both that no matter how cranky and tired I am, I still will always love them. I was even motivated to tuck them in tonight and was able to sing the song we always used to sing together "Jesus Loves Me". It was a wonderful evening.

I do have an attentive neurologist, and after really getting into some of these posts, I can see that I'm ahead of the game and 3 months isn't so bad. I am interested in the neuro-psychological testing and have also started my own little therapy.

I read an article where Sports Medicine Specialists at the University at Buffalo had used some low activity exercise therapy in some of their injured atheletes. I spoke with my neuro about it and he didn't seem on board with anything other than symptomatic treatments. He said I was free to explore other options, but that his recommendation was to get as much rest as possible.

I was feeling depressed about gaining so much weight since I've been sick, and I feel like any step towards anything could be positive. At the least, it might make me feel like I'm acting or fighting or something- I don't know.

So, I've started with Wii Yoga. I do the first 5 poses, or whatever I can handle until my head hurts worse or my other symptoms increase. I'm trying to track my symptoms in a blog so I can see if there is any progress. I did too much on Tuesday, and took a break until Friday. I did 10 minutes every day since.

I feel pretty wiped out after, but I can't distinguish if it's any better or worse. I'm looking for more long term, I guess. It's nice to feel like I'm doing something- at least gives me the illusion of control. :wink:

Thanks again for your support and advice. I hope I can be a helpful member of this community along the way.

Hi Kate

I'm Donna, I would like to suggest that you ask your neuro if he would consider sending you for some physical therapy. See if you can find one that specializes in balance and stuff like this. I believe its one of the things that
helped me the most for my last concussion.

I needed it because of the issues anyway, but sure was nice to have a bonus solution to the concussion.

Donna

Post Concussion Syndrome with Headaches
 

Hi Kate,
Go Sabres! We're from Orchard Park.
My 16 year old daughter is suffering many of the same symptoms as you. She got hit in the back of the head with a football in P.E. Class in October, then got hit with a volleyball in Nov. when she went back to P.E. She then hit her head in March on her bunk bed.
She could not tolerate the Topamax either. They call it "DopaMax" for a good reason! Daily Elavil had same reaction.
We tried the Clinic at UB this summer, and did not have any results from it. The docs there are used to treating athletes with concussions, the point being they are already in good physical shape, and they respond to the exercise therapy positively. It cost me $250 to have her evaluated, and it was not covered by insurance, though the therapy sessions were.
She is doing pt/ot at Children's Hospital. She has quite a lot of double vision, especially when reading. They have her using a eye patch and reading out of one eye at a time. She can get through some of her homework that way, but I still have to read aloud to her.
I am going to the DENT neuro. headache center this week for a second opinion, because I cannot stand seeing her in pain every day. They don't want to give her anything for the pain because of her age, but her quality of life has crumbled and she is getting depressed.
Hang in there !

Hi Kate,

You actually have a lot of therapeutic options available to you. Most of them are considered alternative therapies and aren't covered by insurance, but they do work for brain injuries. You can find a lot of info on google about these. Here is a list of them.

1. Neurofeedback
This is the process of training your brainwaves. It has been around
since the 1970's and has been used extensively to rehab brain
injuries. I would contact dr. diane stoler for this (just google her
name). She can help you or point you in the direction of someone who can.
2. Hyperbaric Oxygen Therapy
This has also been around for a while and has been used
extensively to treat brain injuries. If you are interested in this,
make sure you contact an independent place as the hospitals are
very expensive.
3. Vision Therapy
Only look into this if you are experiencing vision and balance
problems. Again, it has been around a while and has been used
extensively for brain injury rehab. Check out N.O.R.A. to find a
therapist.
4. Vitamin and Diet Therapy
Get a good B complex vitamin. You should also get on a fish oil
supplement. Eat lots of protein and cut down on the processed food
and simple carbohydrates.
5. Medication
There are some medications that are used extensively in Europe
and Asia to treat brain injuries. Doctors on the US haven't heard of these because they weren't taught about them in medical
school and because no drug company wants to push them through for FDA approval because the patents expired on them a long
time ago. They include:
A. Oxiracetam
B. Cerebrolysin
This is a bit more "hard core" because it has to be taken I/V or I/M. So, you would need your doctor to show you
how to do that. However, the studies that have been done on this drug have shown remarkable improvements in
symptoms.
C. Hydergene
6. Meditation

This is by far not an exhaustive list, but I think that these are the main therapies being used to treat brain injuries. Many neurologists, I would actually say that 99% of them, don't really know anything about concussions. So, take whatever your neurologist says with a grain of salt. The problem with brain injuries is that it is a very unconventional injury that doctors are still trying to treat in a conventional way.
So, good luck and rest assured that you can improve your condition.

Thanks to Donna, Mitch, and MHR
 

Wow! Thank you so much to everyone who responded. It's been so great to have a community with people who know what's going on. I love that I am overwhelmed with information on ways that I can seek help. I am going to sort through and tackle some of this stuff one at a time.

Donna,

Thank you for the suggestion of physical therapy. I do have so much tightness in my neck and shoulders all the time, and am going to look into being able to set something up. I definitely want to work on my balance and coordination as well, so great suggestion! Did it help relieve some of your headaches and symptoms?


Mitch,

Thank you for your reply. Amazing that I could come online searching for a community, and there would be someone literally in my community! I'm very sorry to hear that your daughter has to go through this at such a young age. That's really tough, but I'm glad she's got her Daddy fighting for her and giving her the support and help she needs- kudos to you!

I'm glad to have the information about the trials at UB. I called over there and they said they weren't even running it anymore for the public. I'm happy to learn from your experience and not waste the time and money over it.

I see Dr. Kang at DENT. He's the neuro that I've been seeing since I hit my head. He's very quick and to the point, but he also seems very smart and has a whole arsenal of meds to try. Every time I see him, he's trying something new. He says straight out that the condition is self-limiting and self-healing and that he can't cure it, but he wants to treat as many symptoms as he can. He also sees me every 2-3 weeks to track my symptoms and try new things. I really hope that he can give your daughter some relief from some of her symptoms.

I feel very blessed that I am done with school, I can't imagine what she is going through. :eek: Again, I'm glad to see that she has an advocate in you.


MHR,

Wow, thank you for all of that advice! I am going to research all of this information and dig through it. I don't see my neuro again for 3 weeks, as I just saw him before I found this community. Have you tried any of these therapies or know anyone who has? I'd be really interested to hear about it. You are right about the brain being unconventional. It's so weird to go through something that doesn't have a cut and dry solution. Good luck to you and thank you again for your post.

Kate,

I am impressed that your neuro is concerned enough about you to see you so often. I had a seizure in the ER and my concussion resulted from falling out bed while having another seizure and the bed rail was not up. My neuro works for the hospital and I am pretty sure that she doesn't want to treat the PCS because that would admit that the hospital was at fault. She continues to explain that the symptoms could be a result of my seizure meds. I have printed out the symptoms of PCS and the symptoms of Lamictal and by far I am suffering from PCS. I even saw a sports med doc who confirmed this diagnosis, but she is still not will to help me out.

What I really want to know is if anyone has symptoms a day after you do something. I can work out one day and everything seems fine, but the next day my head hurts so bad I sometimes have to spend it in bed. If I have to work, I suffer through the day. I couldn't sit through a Wisconsin Badger football game because of all the noise and lights. The next day I felt like crap again. This past weekend, I attended a birthday party that included a small acoustic band that was not loud by any means, but the drunker people got, the louder they got. I had to go outside numerous times because I could not take the noise and the flashing lights. So my ride home yesterday (3-1/2 miles) was one of my worst rides home with the bumpy roads. Even lying my head on a pillow was painful. When I got home I tried to sleep it off, but that didn't help either. This part is all new to me because the accident happened in December, so football games, etc. bring up a whole new experience than what I have had the past few months. The longer this goes on, the more frustrated I get. I have two kids who want their mom to enjoy things with them. I am thinking about another opinion, but keep dragging me feet.

PCS for over a year...
 

Kate,

I too have been diagnosed with PCS, although I was diagnosed nearly a year ago. I was hit in the head with a volleyball while coaching for my school I taught for. My case has become a fight with Worker's Comp, and it is a joke! I am 28 and have been active, and even am a PE teacher, but this has left me 35 pounds overweight and completely disabled. I have had a CT Scan and MRI of my neck, but nothing showed up. I struggle with bright lights, loud noises, fast moving objects, getting to sleep and sleeping well - I wake up fatigued everyday and fight a headache daily. I have been treated for Vertigo, and my Vestibular therapy helped big time with my symptoms. It decreased the intensity of my headaches, and helped so that I could get some of my daily function back. I was hit on Sept. 9, 2009 and even today I am still struggling with headaches, spatial awareness, my mood swings are terrible and there are times I don't feel comfortable driving because my attention is terrible. I have done neuropsychology testing and met with a physiatrist and neither of those found anything worthwhile. The only thing that seems to be helping right now is my neck therapy. I have a Certified Orthopedic Message Therapist/Physical Therapist that has helped reduce the number of headaches I get, but that is the only symptom that gets relief.

I have done a lot of research, and have found there are Cognitive Rehabilitation centers across the nation that help people with PCS and TBI's regain their "brain power" so to speak. Apparently there is a way to regenerate the damaged areas of the brain back to their normal functioning. The only hard part is finding a doctor willing to refer you to them. I have a great neurologist, but even he says that with PCS it can take months to years to fully recover.

I lost my job, lost my ability to enjoy my hobbies, and it seems the longer time goes on the more symptoms show up. It was 5 months after I was diagnosed that the symptoms hit the worse part, and I had to take a month off of work and do nothing but rest in a quiet environment. It helped, and I learned from it that when the symptoms get real bad, you have to find a way to get away from stress. My neuro said that stress is the WORST for PCS.

You aren't alone Kate! I am glad to find this to know I am not CRAZY!!! Keep fighting for your health care, and don't give up! My neuro told me there is a great resource in Philadelphia that can test the brain to see exactly what is damaged. I can't remember exactly where (go figure with my injury) but you might want to check into it! Good luck!!!

Sheds
 

Hi,

I'm sorry for what you are going through. It's awful that you are not getting the help you need. My neuro is a headache specialist and I really have my general MD to thank. She is an advocate for me and knows her limitations. She is always quick to refer me out if she can't handle what I'm dealing with, and has a great arsenal of referrals.

Are you taking any medications for any of your symptoms?

I have really limited my calendar ever since this happened. I know my limitations, and have scaled everything back. Anything that I do outside of my house is a choice. When I make that choice, I know that I'm going to deal with the aftermath. So, I just have to decide what's worth feeling like garbage for as long as I take to get back to "normal".

My sister is getting married in less than 2 weeks, and I am her maid of honor. I am doing what I have to do for her, and I don't leave the house otherwise unless it's for a dr. appt. My husband, 2 kids and I have season tickets to the Bills this year, and we're selling them off week by week, because I can't handle going to the games. We tried to go to a preseason game and I was throwing up by the end of the 1st quarter.

You are right- SO FRUSTRATING!

I used to be quite the social girl, but now I find myself saying no and losing friends one by one. My husband apparently spoke to my kids and explained how being around Mommy has to be like being in the library. What's amazing is my 5 and 7 year old get it. They forget and make mistakes, but they are so understanding about why I can't do things and go places.

I'm very lucky that my husband is so amazing. I also come equipped with a church family that is amazing. Someone makes a dinner for my family once a week to give us a break. My extended family is all in the area, and they help me by taking the kids out for fun things. God has certainly given me the tools I need to get through what I'm going through.

It still sucks that I can't be the one to take my kids to do fun things, or cook a nice meal for my family, but I'm learning how to take the backseat and enjoy doing the things that I can do with them. I have become a much more humble person because of all this.

I'm glad to share with you and I'm glad you shared with me! Until a few days ago I felt so alone in all this! It's really nice to vent and share in this community!

Good luck! Keep me posted.

Kate

Yes Physical therapy helped me immensely. So much so that at times I find myself missing it. I use it at times for other parts of my body. I have fibromyalgia and its very helpful.

I also have had massage therapy because of tightness in muscles and it is very helpful for the neck and head muscles. So I would suggest looking for a very good massage therapist too.

Donna

Hey Shreds, I too find that if I overdo it one day, I pay for it the next. If I'm really forced to exert myself (caring for sick child, etc...) it can take me weeks to get back to "normal." I also wonder if you shouldn't be firing your neurologist and hiring a good lawyer. Your neuro is concerned with covering her butt, not healing your head.

I second Donna's call to see a PT. Mine's great. In addition to helping with pain management, we workout together twice a week. This is valuable because he makes sure I don't hurt myself and helps keep me motivated - because we all know what brain injury does to initiative. Like Coach said, the weight gain is really depressing. I'm doing my best, but forced inactivity and med side effects are hard to overcome. I also find I have weak impulse control and will eat things I wouldn't even have looked at before I got hurt.

Hockey,

I am getting a second opinion, but there are a lot of hoops to go through to get one. I also hired an attorney. It makes me mad that I have to "prove" my problems when it was their fault in the first place! Last night I worked out lifting weight and 30 minutes cardio and I have a really bad headache today. I can't miss work, so have to plug my way through the day. I always have a tendency to think there is no one else out there with the "day after" effect. Thanks for letting me know at least you are out there for me to write to.

I appreciate this website for being able to just vent about the frustrations involved in trying to get people (docs in particular) to believe you.

Remember we are always here for you or anyone to vent.

Its definately something we need to be able to do.

I am so glad that I still have this place.

Donna:grouphug:

Coachbigc
 

Hi Coach,

I'm sorry you have been going through this for so long! PCS is frustrating enough as it is without adding the other outside factors into it. I'm so sorry you lost your job. My work just called and told me they finally filled my position after me being out 3 months. They were willing to hold my job until September 1st, but after that, they couldn't wait any longer. I'm glad they found someone so they aren't struggling without me, but it's tough to accept that anyway. It's hard to lose the roles you are so used to playing.

It seems like you've tried a lot of different things to get improvement without much relief. I'm sorry to hear that. The Nuvigil I've been on for almost a week kind-of helps my fatigue. It gives me 5-7 hours where I don't feel like I could sleep, but then there is a pretty intense crash around dinner time. I am allowed to take a 2nd one if I need to during the day, but I'm afraid I would never fall asleep. I also take Amitriptyline at night to help me sleep/antidepressant. I take Treximet when my headaches turn into a migraine and that helps a lot to reduce it back to a normal headache, but it wipes me out a lot.

Are you taking any medications to help any of your other symptoms? My neurologist is hesitant to even discuss newer treatment options. He's a headache specialist and does a good job staying on top of my case and trying to treat the symptoms I have. I think that head injuries are so complicated, and the technology to figure them out and treat them are really limited.

I'm only at 3 ½ months right now, and I worry about how long this is going to last and how bad things are going to get, but I'm glad to not be alone. It's very comforting to be in this group with like minded individuals. I know what you mean about being in a quiet place and resting. My amazing husband gets the kids on the bus for me and lets me sleep in and wake up to an empty house. I am alone until 3:45 when my 2 kids get home. As soon as they do, the stress and noise starts and my medicine crashes. That's the trouble time!

Thanks again for your encouragement and advice! Hang in there!

Kate

Work it out so that your medicine can last just a little longer than when the kids get home. This would help you a lot.

Donna

That's a good point Donna! I should take it at 11 instead of 10 probably to let it ride a little. See how the "stupid brain" makes me!? LOL! It's so funny how it's hard now to see simple answers, and I just get frustrated instead of thinking about a solution. Thanks!

I just saw a new physician last night. A PA who specialized in men's health and natural remedies when possible. His first concern was my progesterone level. Low progesterone is bad for the brain in his experience,. It has a neuro-protective ability.

I had 8 vials of blood taken this morning. Once he has my hormones correct, he will start working on neuro-transmitters. Choline and GABA are his first concerns. He would like to get me off the Paxil (me too) because he believes the side effects are worse than the benefits for an injured brain. L-Tryptophan is a possibility.

He does not use blood tests for neurotransmitters because they are unreliable. He looks for neurotransmitters' downstream metabolites in the urine. Sure beats more pokes in the arm. I went out cold this morning.

He wants to see my P-300 brain map/ QEEG. He says this can help him find where the malfunction is.

He appears to be up to date with the research and is willing to think outside the box (the box folded by the pharmaceutical companies).

Stay tuned....

To the women on this forum, get your hormones tested by someone who knows what they should be, not a shotgun, one size fits all GP or Gyn.

The cascade effect hormones can play on the brain's function can be life changing.

Men need this too but women appear to have more common problems as they cycle and use birth control pills, etc.

I'd be interested, Mark, to know if your new doctor uses inositol?

We've had great results with this for my husband, who had a severe brain injury at age two (fell out of a second story window). While as an adult, he does function pretty well, he tends to have severe anxiety in new situations. (like traveling).
Given the plasticity of the brain at the age he fell, I think he has remodeled. The only severe deficit is he has trouble recognizing faces still today.

I started him on 1-2 grams of inositol daily about 2 yrs ago, and he is really so much more mellow! Inositol helps with glucose utilization in the brain.

So if you find out anything about this please PM me. I'd appreciate it.

I use l-tryptophan myself. I think it is very helpful. I tend to have mild depression connected to chronic pain. And the l-tryptophan helps that. (take with B6). I only use 500mg/night.

Mark,

Good to hear that you are getting your neurotransmitters tested. And, your PA isn't using neuroscience to send your urine sample off too, is he? If he is, do you remember all of the flack you gave me on neurotransmitter testing a while back...? :):D:wink:

Keep us updated on your progesterone therapy. I'm currently in the process of getting my hormones tested and balanced (if necessary), so I would be interested to compare notes with you. I'm also trying to get my adrenal gland straightened out because my last cortisol saliva test showed that mine are out of whack.

Good luck and let's hope the PA finds something worthwhile to treat.

SSRIs and TBIs
 

Hey Mark,

It's interesting that your new doc doesn't like Paxil for TBI patients. A study released in 2008 by Toronto's Sunnybrook Hospital showed that, for brain injury patients, SSRIs were largely ineffective and sometimes even counterproductive. This was a big study and one of the few not funded by the drug companies themselves.
http://www.sunnybrook.ca/media/item....i=258&page=524

Hockey

I haven't read the report yet, so if this doesn't make sense sorry. Can you direct me to or give me a thought of something other than paxil, that would be a lot like it that might be better. I have someone in mind that had a pretty severe TBI, that its just now being realized that it was never considered one. And paxil is one of the few meds she can take.

She has a problem with being able to take few things. SO this can be quite a problem.

Donna

Kate

First, you are not allowed to say that you are stupid. You were just not considering how it might be if you waited a little longer. Also consider how you eat too. If you take the medication with a full meal it might last longer.
Not sure on this one. this is something I'm learning a lot about right now.

Next you might come up with a small routine for yourself that you follow daily.
Like a few exercises that you do. Then you also might say, do some mediatation about 30 minutes before the kids are supposed to come home.
I used to try and take a little nap just about 30 minutes before my son came home. It seemed to help me, that or I'd nap the first 30 minutes he was
home. Which he was fine with, he liked to play with the dogs so he would
take them and do that then tell me about his day.

Donna

I already knew that Paxil was dangerous. But, for me, I needed the effect it had on repetitive thoughts that overwhelm my mind.

My brain will get stuck repeating the most mundane things, like a license plate number, a stanza from a song, the spelling of a word. The repetition can last for hours or even days. I may be able to stop it momentarily but it will return. It is an exhausting symptom.

The Paxil works at the 60 mg per day dose but it can be brutal with side effects.

An alternative is L-Tryptophan and other precursors to whatever neurotransmitter is out of whack.

There are other SSRI's and SNRI's that can be helpful but I have never found a physician who will work with me to find a better solution. Back when I went on Paxil, my psych wanted to use L-Tryptophan but it had been blocked by the FDA because of a bad batch that caused some deaths.

It is back on the market now, but I want a physician to help me. The withdrawal from Paxil can be very dangerous. It should never be done without the support and supervision of a knowledgeable psychiatrist.

You guys should be careful with L-Tryptophan. The FDA is still not convinced that it is a safe product and as a result, it is still banned by them even though it has crept back into the market. However, despite the FDA's stance on tryptophan, I have read that it is completely safe to use. The story on Tryptophan is that a series of strange incidents happened in 1999, (by the only reliable accounts, a muscle-paralyzing disease that was caused by an impurity in one manufacturers tryptophan when they changed their manufacturing process.) initiating a chain of events that ended up in an FDA action causing tryptophan from being withdrawn from the market in the US. Other reports, although unverified, have said that it also caused liver failure in these patients.

There are two good alternatives to tryptophan that are just as effective and aren't banned by the FDA. These are 5-HTP and SAMe.

Here is a monograph on tryptophan:
http://en.wikipedia.org/wiki/Tryptophan

The general feeling is that much of the hoohaa was due to pressure from Eli Lilly to remove it, as it was a competitor for the newly introduced Prozac. As the article states, tryptophan was never completely removed from sale...only as a stand alone product. It was safe enough for baby formula back then!

I find tryptophan gentle and easy to tolerate. 5-HTP can cause alot of side effects, IMO. I had extreme edginess, and irritability from 100mg a day of 5-HTP.
Tryptophan for me only causes sleepiness in the beginning, hence I take it at bedtime. (there is less competition at the transporter at this time too).

Some doctors use l-tryptophan now, to ease the symptoms of SSRI withdrawal syndrome, when people discontinue drugs like Paxil and its cousins. SSRI's actually lower serotonin synthesis, because the brain cells do not need to manufacture it as much since it is not being cycled, and it remains in the synapse. In fact serotonin byproducts decrease in the CSF during treatment with SSRIs. Tryptophan may be introduced when the levels of SSRI drug are withdrawn, and may help prevent some of the unpleasant patient reported effects of the discontinuance. This should be monitored by the doctor, of course.

I don't think jumping in with high doses is necessary. I am still at 500mg a day, which is really quite low. That is in the range of food sources. Taking tryptophan in the gram ranges, is another issue IMO. It is also expensive at those doses. I always recommend slowly introducing amino acids, since people vary considerably in response to them. (their own genetic situation concerning amino acid ratios can vary tremendously from person to person).

5-HTP is NOT a safe alternative to L-Tryptophan. L-Tryptophan metabolizes into 5-HTP but not without the brain's regulatory system controlling it.

5-HTP bypasses this regulatory system. 5-HTP can easily be overdosed and result in serotonin syndrome.

SAMe may be used by some for depression but it does not effect neurotransmitters like L-Tryptophan.

SAMe also needs to be only be taken with the appropriate Vit B and other supplements. Otherwise, it can cause a dangerous increase in homo-cysteine levels.

The L-Tryptophan controversy has long ago been resolved. It was an isolated incident due to manufacturing contamination.

As you can see, I am choosing to use a physician's assistance before attempting to fiddle with my brain's neurotransmitters.

I suggest others do the same.

I was under the impression that it was banned. It's good to know that it isn't. [

QUOTE=mrsD;568201]Here is a monograph on tryptophan:
http://en.wikipedia.org/wiki/Tryptophan

The general feeling is that much of the hoohaa was due to pressure from Eli Lilly to remove it, as it was a competitor for the newly introduced Prozac. As the article states, tryptophan was never completely removed from sale...only as a stand alone product. It was safe enough for baby formula back then!

I find tryptophan gentle and easy to tolerate. 5-HTP can cause alot of side effects, IMO. I had extreme edginess, and irritability from 100mg a day of 5-HTP.
Tryptophan for me only causes sleepiness in the beginning, hence I take it at bedtime. (there is less competition at the transporter at this time too).

Some doctors use l-tryptophan now, to ease the symptoms of SSRI withdrawal syndrome, when people discontinue drugs like Paxil and its cousins. SSRI's actually lower serotonin synthesis, because the brain cells do not need to manufacture it as much since it is not being cycled, and it remains in the synapse. In fact serotonin byproducts decrease in the CSF during treatment with SSRIs. Tryptophan may be introduced when the levels of SSRI drug are withdrawn, and may help prevent some of the unpleasant patient reported effects of the discontinuance. This should be monitored by the doctor, of course.

I don't think jumping in with high doses is necessary. I am still at 500mg a day, which is really quite low. That is in the range of food sources. Taking tryptophan in the gram ranges, is another issue IMO. It is also expensive at those doses. I always recommend slowly introducing amino acids, since people vary considerably in response to them. (their own genetic situation concerning amino acid ratios can vary tremendously from person to person).[/QUOTE]

SAMe is only a methyl donor. It cannot make any neurotransmitters without the substrate being available to attach the methyl groups to.

Tryptophan requires B6 to be converted to serotonin.
And serotonin requires methylcobalamin (methyl B12) to convert to melatonin.

Tryptophan does not easily cross the BBB, but 5-HTP does.
Other amino acids compete for the transporter across the BBB.
Taking tryptophan spaced away from other protein foods, will allow it to cross the BBB more easily. High insulin levels facilitate this too.
That is why 5-HTP may cause more side effects, as it crosses easily.

Mark,

There have been no published reports of 5 HTP ever causing serotonin syndrome when taken alone. If you have one, please post on here to substantiate your statement. Yes, if you were to take mass quantities of it over a prolonged period of time, it probably would cause this to happen; however, taking mass quantities of anything for a prolonged period of time can cause adverse side effects. You really only run the risk of developing seretonin syndrome if you mix MAO inhibitors, SSRIs, or tricyclic antidepressants with themselves or with 5-HTP or Tryptophan. You can also develop serotonin syndrome by taking mass quantities of tryptophan. *edit*

SAMe, at recommended doses, is very safe to take. It also has been shown to affect serotonin. Therefore, it can be considered a safe alternative to taking tryptophan.

And, of course, everyone should seek medical advice before taking any drug/supplement that is posted on here. I guess that was always assumed when I posted.

I think both Mark and mhr4 are correct in their own ways.

At one point facts lead to a decision or belief. I tend to post facts when I post mostly on the subject of supplements. But at times,
I enter the "belief" point of view when I have personal experience.

Here is an official monograph on 5-HTP, which comes from one of the sources that I respect:
http://www.umm.edu/altmed/articles/5...han-000283.htm

It contains a list of other drugs that may interact with 5-HTP at the end. It also contains the typical warnings that appear on many supplement advice sites, which may or may not happen.

To get a clearer picture as to why 5-HTP is more potent, here are the pathways that tryptophan is involved with:
http://www.genome.jp/kegg/pathway/map/map00380.html

Tryptophan is involved in many reactions. Each rectangle is an enzyme that converts the various substance in all directions from tryptophan. Notice that 5-HTP has a much more limited function.
One of the paths 5-HTP may take is the kyneurine pathway:
http://en.wikipedia.org/wiki/Kynurenine_pathway
This synthesizes niacin in the body, which is a good thing.
It also contributes to a negative inflammatory pathway which is still being investigated. Tryptophan but not 5-HTP eventually may be used by the body to make Acetyl CoA which is very important (lower left).

This graph is very complex and one does not need to understand it all...but it illustrates where things happen, and which substrates are used.

The way I look at 5-HTP is that it is more of a "drug" than supplement because its actions are more limited. At this time our knowledge of brain biochemistry is really limited, and we are finding that genetic differences between people determine how they respond to drugs, and also may need more or less of a certain nutrient. 5-HTP has potential to cause harm, but I have not read that it lives up to this potential commonly unless misused or used with other certain drugs. When 5-HTP came out it was ferociously expensive... up to $60 for a month's supply. It has come down since then. Tryptophan today is also expensive, and in some ways, this high price limits the potential for taking too much by most people. If one is going to use tryptophan modestly, I see no potential dangers. There is significant tryptophan in egg whites for example and it is present in high amounts in whey protein. When you get above 2grams a day, then supervision by a doctor is wise. Taking tryptophan ALONE may allow it to cross the BBB (blood brain barrier) more effectively so really high doses may not be needed for most people.

I'd also make sure when deciding to use 5-HTP you consult your doctor because of the drug interaction potential.

Serotonin syndrome really only became recognized with the introduction of SSRI drugs. These are far more likely when misused to cause serotonin syndrome. They even interact with DM (dextromethorphan) an OTC cough suppressant. The most common interaction is SSRI + migraine triptan use. But doctors still give these together. This is something that bothers me tremendously!

thanks to mrsD for the balanced reply :)

I have quoted the original post here, as we would appreciate please if the topic could now stay on track. If members disagree with one another to the point where it becomes a back and forth that really doesnt advance the discussion, but instead detracts from the useful information, then we request that those members disagree politely! in PM and let the discussion here move forward.

I have removed 2 posts and hope the discussion can now return to mutual exchange of information without argument

thanks

Dear Kate....

After rereading your post here, I have a question for you.
Was the Treximet your FIRST migraine drug composed of a triptan?

Treximet is a fixed combo of Imitrex (high dose) and naproxen.
If you are just started on this, 100mg is a high dose and you should not be feeling "like you are having a heart attack".

Both drugs are available separately, and you could be started at a lower dose that might still be effective. Imitrex starts at 25mg.
Naproxen is OTC and you could take it that way if your doctor wants both.
This product was designed to keep money coming in for Glaxo...so when Imitrex went generic, they'd still be having Treximet making money for them. It is really meant for people who are used to high dose Imitrex.

Are your migraines on the right side of your head? That would be the side that affects the left side of your body.

Thank you Chemar, I couldn't agree more. My intention here is to only provide members with information, and not to debate another member on trivial matters. My apologies if I have become a distraction. I will make a concerted effort to avoid this in the future.

Hey Kate,

If you are suffering from migraines, which I just picked up on from re-reading your original post, there is an alternative form of neurofeedback that was developed to help people who suffer from migraines. It is called pIR homoencephalography (HEG) biofeedback. It was developed by Jeffery Carmen Phd and has actually been used in rehabilitation for brain injuries. Essentially, it measures metabolic activity in the pre-frontal cortex (the forhead) by measuring the temperature in that area. The idea behind it is that increased temperature leads to metabolic activity, which leads to increases in blood flow, which leads to increases in angio genesis, which leads to increased blood perfusion to that area. Since this is the executive decision area of our brains, it also increases these skills in people who use it.
It helps people who suffer from migraines because of the increase in blood flow that is seen with its use. There has been some research done on it as well.

I personally use it and find it very helpful. My dad, who has suffered from migraines for years, used it over the summer and found that it completely eliminated his minor migraines and substantially reduced the severity of major migraines. He said that he thinks it would have completely eliminated all of his migraines if he would have been able to continue using it.

Here is the developers website: http://www.stopmymigraine.com/
You can purchase it here: http://www.brain-trainer.com/

There is also a variant to pIR called nIR. It does essentially the same thing. Although, it has been researched more for brain injuries than nIR. It measures the difference between oxygenated and deoxygenated blood in the prefrontal cortex. So, you try and increase the ratio of the oxy/deoxy blood to that area.

Thanks Chemar

Kate you need to just relax and take things easy.

Donna

replies... late ;-)
 

Hi Mrs. D,

Treximet is the only migraine drug I've been on since this whole thing started. It has 85mg of Sumatriptan and 500mg Naproxen Sodium. The neurologist said that the heart attack feeling is a tissue reaction to the medication and wasn't harmful. I barely feel it or notice it anymore. It helps my migraines so much, I would be afraid to switch to anything else. Maybe I will ask my neuro if I could step it down? I'm not sure. Thanks for that info though, I didn't even look at the drug to see what it was composed of. Maybe I'm too trusting to my neuro.

My migraines are in my neck and go up the back of my head on both sides all the way around to the front and sides.


MRH4,

I took a biofeedback class in college that was really helpful for me then. I'm going to ask my doc about it. I also want to try neuro-psychological testing. Thanks for the info!



I'm trying to get as much rest as I can and trying not to be involved in stressful situations. My sister's wedding is Saturday, and I'm the maid of honor.... so I'm trying to prepare myself. My neuro said I can take 2 Nuvigil spaced apart during the day to help battle the fatigue if I need it on that day. Please pray for me you guys!

I'm really happy to say that I have an amazing husband who lets me get as much rest as I can, so the week after will be a great recovery time. I'm going to try and leave the wedding early, and not over do it. Hopefully!

Kate
Two suggestions for the migraines. Because of were the headaches are.

I would see if you can find a good massage therapist. I know that mine has helped my headaches a lot. Also it helps the other aches and pains of my body. I have fibromyalgia and at times its really bad. I have stiffness and tightness in almost all my muscles. So she works very hard to help try and
keep it down to a minimum.

Next to step down to another drug, ask if you could also have imitrex.
Its the sister drug to what you are taking. Just not exactly the same thing.
Its also what I take, it works really good.

Donna

kate,

I just got back from a Brain Injury Support Group meeting at our local rehab hospital. The neuropsych gave a presentation on sleep problems. He said that the research points to low doses of Amitryptiline as being beneficial to increases in REM sleep. It sounded as if he also meant that higher doses were counter productive. He left before I could ask any follow up questions.

Just an idea to pass on to your prescribing doctor. Maybe he is already using this info.

Kate: After my then 14 year old daughter suffered a series of concussions, in addition to balance issues, light & noise sensitivity, difficuly focusing, headaches and fatigue she started having what we termed "episodes" where her energy would completely drain from her body to the point where she could hear all that was going on around her but was unable to respond even to groan or lift a finger. They would come on suddenly and without warning, although we figured out eventually that lack of sleep and long periods of loud noise would predispose her. Eventually the episodes got less severe and frequent and after 2 1/2 years she is back to old self. What was critical in her recovery were the following:
(1) EFFEXOR -- Technically an antidepressant, but in small doses helps to re-establish nerve pathways in the brain (She first used Elavil, but Effexor has fewer side effects); (2) ACUPUNCTURE; (3) OSTEOPATHY; and (4) HOMEOPATHY. She didn't do all of these concurrently; for example, when #2 didn't seem to help any more she moved on to a practitioner who combined #'s 3 and 4. I hope this helps. This condition can be so frustrating and it's easy to feel defeated, but please know that people do get better. Throughout the course of her recovery we never imagined that she'd be whole again, and there were points along the way where we felt, "OK, she's not the way she was, but she can live a normal life with some modifications." It's still early in your recovery and ANY improvement is worth celebrating. You're fortunate to have such a supportive husband and understanding children. Good luck and good health to you.