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  1. I just joined the facebook group and I am looking to do inulin. I think Nemechek is from Arizona . They have a lot of doctors their like Andrew Weil. The vagus nerve stimulator was very interesting as my son has a Gammacore for his vestibular Migraines. I am reading the book right now trying to decipher the dosage of inulin to use. We already are on a very restrictive diet for healng migraines so adding inulin isn't really much more work than otherwise. For those of you that use the ear clip tens unit how on earth did you figure out the setting? My sons gammacore is calibrated but crazy expensive even with a prescription my insurance doesn't cover it. I had my son try acupuncture in the ear area and it sent his dizziness through the roof.
  2. There is a book called "Heal your headache" and a new cookbook by someone who has my sons vestibule Migraines "The dizzy cook" We tend to make foods from scratch and I think the tyramine is the big deal compared to histamine. It ages in food and causes migraine problems so pickled and aged cheese .
  3. New update I will post in the top of the thread in a bit. My son after numerous tests and traveling out of state to specialists has been diagnosed with a Vestibular Disorder called "Constant Vestibular Migraines" I am now working to homeschool him for 6th grade math and the school is allowing him to attend from 1pm to 3pm daily when he is well enough to attend. He is on a very strict diet ( The migraine Diet) and on medication for anxiety and the constant dizziness he experiences. I was going to start a thread about Gluten, Genetics, GABA brain chemistry, methylation and such but this board is likely not the venue. Can anyone point me to some threads on this or pm me some information that would be greatly appreciated. My sons diet is Low in histamine and thyramine: here is the link. but its basically no aged cheese, no msg, no caffeine, no food additives, no citrus, no nuts, no avacodos, I also have him on no dairy and no gluten for now but I am working my way through that.
  4. Hello I posted and pm'ed as my son was diagnosed with Vestibular Migraines. His are near constant and very difficult to control. I am still trying to figure it all out but thought I would say hello
  5. Off to Google all of that and the books. Have any of you ever taken a kiddo to. The ER for IV rescue It's 2grams. Magnesium. In 1 liter saline Then IV push of Topomax benadryl and an IV steroid
  6. Just posting an update. He was diagnosed with Vestibular migrains and Pesistant Postural Perceptual Dizziness. Now he has started to develop Traditional Migraines that will not break. He is currently on a Beta blocker Propranolol and Prozac as the migraine specialist said this can work over time. Anyone have a kiddo with Migraines. We tried a rescue with Trypson type medication and it made it worse. The doctor wants me to take him to the ER to try IV rescue Topomax and Magnesium. it may happen but my son is terrified of IV's and I am trying everything else first. I guess I am officially homeschooling if you can call it that. The school called last Monday and my son has been home with Migraines and not attending. He says the migraines ramp up the dizziness. Sorry guys I am in mom hell right now losing heart. the Prozac helped with the depression and it is obvious that there is something serious going on as no medication seems to break the dizziness. My mom had this for quite along time when it was Menieres and eventually abated. Our Vestibular therapist has not been helpful at all. She gave us a gaze fixing exercise to do and prior to the onset of the migraines I had started to work on home therapy and trying to retrain the brain to balance. Now these headaches are so severe I can't get much cooperation for anything. I requested a VNG to make sure that this is in the CNS instead of the cochlea ear area. Given his history of Auditory processing my working theory is that the auditory vestibular nerve was always weak and the surgery inflamed and agravated it to such a high level and that is why the symptoms are happening. Pen I will try to do that urine test but we have no sunshine here. The diagnostics for MS and nerve stuff are sucky they are sending him to a CNS neurologist now we went to a Neurotologist ( who diagnosed the Vestibular migraine and 3PPD) and then a pediatric Migraine expert . I truly have no idea what happened, why this came on and how to help my son. MRI ruled out tumor or Cholesteatomas and any kind of brain tumor. Cardiologist said that POTS is unlikely as he has these symptoms laying down.
  7. I am sorry I haven't been on the forum so I can't remember all the details. I also have a 10th grade girl so I can give a mom hug and say don't give up on the independent thing yet. 9th and 10th grade are a tangled mess for all teen girls. Something that I have come to realize with all of my son drama is to focus on "not losing heart". My daughter who has none of these issues has had me thinking the same thing " Will she ever leave home and function on her own?" Not to minimize your situation but I think that we all have our moments like this when these girls are this age. With my daughter we focus on building agreements on what is ok and not ok. What we are comfortable with and what is not negotiable. For example if you can't get all the classes focus on 2 or one. Focus on moving her forward even if it is at a minimum pace. Take what you can get and pace yourself. Work on giving yourself compassion as it makes it easier to mirror that in the world and allow you to keep heart in tough times. I like this article because it reminds me to practace gratitude and to keep creating visions of the future that I can feel good about. https://tricycle.org/magazine/pema-chodron-dharma-talk/
  8. Thank you for all of your posts. I am going to check on cholesteatoma and porphyria. I am worrying that this is a condition that is going to develop into something serious but if the symptoms don't continue to get worse I am going to continue to work the problem the best I can. So update We went to an out of state pediatric migraine specialist over Thanksgiving. He was very familiar with Vestibular Migraines and 3PPPD (PERSISTENT POSTURAL-PERCEPTUAL DIZZINESS). He prescribed Prozac and a Beta Blocker Polypronol . His symptoms certainly match the diagnosis but no explanation of why or how to resolve. There doesn't seem to be anything that completely removes the dizziness but sensory stimulation makes it markedly worse.
  9. The specialist had him in an audiology booth. He is certain that this was vestinular neuritis that has developed into constant vesribular migraines. It's like he has an unbalanced dizzy feeling like a dial at a 5 but Fast motion, bright lights, strong smells all make it worse and turns the dial up to a 10. The fire alarm at the school keeps going off and wiped my son out. I am just reading up on this now along with following up with some. Kind of OT or PT
  10. Thank you everyone for posting. I am not going to get hurt or offended at all I welcome all ideas. I realized I had left details out as to why I took him to the eye doctor as the documentation to Tha was already in his 504. and that he is going to a ENT neurologist where we will discuss EEG and how to provide some PT to reset that balance syatem Monday and a skilled private counselor who are family has know since 2nd grade. She is working with him on the anxiety and communicating with the school to help keep him engaged as he recovers. If I do acupuncture for vertigo /anxiety my Insurance pays for it and the school doesn't need to know. It can't hurt and it is free to me so I say do it The original solid diagnosis concluded that at beginning this was likely viral labrynrthitis or vestibular neuritis. It can last weeks and weeks like 6 to 8 weeks at the beginning it was hell and pretty terrible but after 5 to 6 weeks he started to Smile and then have moments where he was getting better now he is saying he is depressed and the only thing that brings him happiness is electronics. He also hae moments where he is not distracting himself like laying in bed where he crys and says his head is still spinning. The challenge is I work after he gets home from school. I can't be there to support and entertain him from 3 to 7 and we took him out of soccer and guitar for the fall. I don't like the idea of a depressed 12 year old home. With these symptoms. There is an after school boys and girls club. But none of his friends go there anymore. And the kids who do are quite rough and would not be a good influence for my son. To make matters worse this dizziness and unbalance and disorientation can come and go for a long time. That is really hard for a kid just hitting puberty who already has auditory challenges and extrinsic motivations and significant executive function issues. Really many of these kiddos have symptoms that dance on the border of add. In my sons case he is delightful if not at school and boring work isn't involved. He can clean his room and perform at a high level given the right motivator. He is kind but likes to be close friends more than running in groups. The doctor days he likely has inattentive add but there is no way with the dizziness and oethostaric issues that we an try concerta or anything like that. Strattera can cause oethostaric issues so that is out as well. I have not read up in all. Of the alternatives but there is a good natural path that I could consult. I have hit green smoothies and need to get the cruciferous sprouts up and going. The symptoms don't go away easily. It is r as hard to laugn and joke with friend as it is to write a full essay. He did make it through tricker treating and has played at a friend's house. He went bowling with friends, his sister was there and said he was having fun. He came home wiped and said it was fun but took more out of him than it gave in happiness. I share this because you are. Some of the most insightful parents and I think sharing what I can might stimulate more ideas. Now I am going to go back and read all of the posts just wanted to clarify
  11. PP thanks for the follow up question to my recolection this is all I have done. Aug 12 surgery tonsils adenoids because of challenges with sinus infections and if he gets the sinus infections just messes up his hearing attention and auditory processing Sept 3 started a brand new school September 18 tried Concerta for 3 days. September 22nd had fevers and started to have a bit of a chill. DR told me to try to keep it from going into his sinus so said to use sterile epi pot sutures had healed at that point and ENT from surgery was happy that all was well. My son was still dragging along and felt a bit tired trying to get back into school . decided to wait o the concerta MondaySeptember 23th urgent care thought it was inner ear infection as balance was affected. At this point I was worried about him missing an entire week of school instead stretched for 5-6 weeks September 26th Saw Surgery ENT as 6 week follow up from surgery Balance severely affected couldn't walk straight. Room spinning while sitting or laying Doc gave him prednisone, Meclizine, tried Augmenton. September 30 saw his pediatrician. thought it was likely labrynthitis or vestibular neuritis wrote him out of school and I worked at home in keeping him walking around the block holding my arm etc. October 2nd. Chiropractive very good kinisiologist who tried to access if it was worse looking a different direction and assigned the epley manuever and other manuevers for the inner ear then we would walk him holding my arm. Didn't see to work but we continued that for 2 more weeks and returned several times to chiropractor. Ocober 15th had an assessment 3 weeks from start of symptoms with Vestibular PT. She did not feel it was meneres thought it might be the CNS related as his eyes didn't spin etc he could walk toe to toe and jump off a step. didn't seem to matter which way he looked . Elevators and standing affect him as well as riding in the car. Laying down or sitting down do not make him feel better. He feels like he is sinking into the bed through the floor. October 15th saw personal counselor to help him with the emotion and stress. October 18th continued from 2 weeks earlier to have Blood Pressure symptoms orthostatics he would become lightheaded while laying to standing his blood pressure dropped and he would almost faint. plugged him full of electrolites and water. Still persisted October 21 removed his braces so we could get the MRI October 23rd saw the cardiologist EKG and Echocardiogram normal but orthostatics continued so we took him off of meclizine and hydroxyzine etc because it didn't seem to be that kind of "dizziness" didn't improve on weekends laying down or sitting. Cardiologist said lets keep going and not look at POTS because it still was only 4 weeks in. October 24th MRI and blood work. All normal. OCtober 28th tried attending 10-3 up until this point he had been attending from 10 to 1pm as we could make work October 30th Went to Vision Therapy Optomologist. He said my son's ocular motor was significantly impaired. He is going to retest him next week. Editing to clarify. My son had vision therapy with outstanding outcomes and as part of that he returns for yearly checkups and eye exams so we have a lot of data. He had his exam end of July so we have good data. I went back because part of this testing can access ocular activity and ability to read as well as brain assessment. They use these tests for Parkinson and concussions etc. But anyway we have good data to. Compare to so this is helpful data and shows that now he is having ocular motor impairment. Son continues to be dizzy and moody. Is not helped by the 12 year old "Malaise" I am getting grief from "cooperation" with the teachers but I honestly one week until Thanksgiving and then 3 until christmas break so we can ride it out and regroup. As soon as I get the all clear from the Neurogist will try Prozac but I am concerned it is going to just increase problems . We will see an ENT neurologist
  12. This is something that is of big concern to our pediatrician. He knows it is very challenging to get a child back to school when something difficult happens health wise. My son is attending school from 10 to 3. I get him up and get him on the treadmill. I have told him that he needs to do this to not have to repeat 6th grade. We are also telling him to focus on math as much as possible because that is what will hold him back . he is basically existing at school as far as academics but I have told the teacher to just be patient and as the fog clears hopefully it will improve. We are pushing him strongly into a routine. The anxiety treatment is prozac and I worry to start it until he sees the nuerologist ENT Monday then I will have to decide to start it once I get the all clear from him. I am going to ask him about the EEG as well. thank you for your input It was of great help. Could you share more of what advice you might have give reflecting on your sons experience and that of your friends? Did the condition improve on the weekends? Did the child participate in activities outside of academics? My son was so grateful he could go with his dad trick or treat for a few blocks. Was exhausted but glad he could go. He has gone to friends house and been goofy and enjoyed them but has not played video games becuase they are too disorienting but tries to stay on youtube alot but I take it away and restict it as much as possible.
  13. Oh yes and perhaps chlorella to detox that. I was radically low in B12 so prior to him. Beinf tested I had given my kids a low dose of B vitamins once a week. Both of my children are highly highly anxious. The doctor is concerned that the anxiety and the depression of being ill is going to be like kerosine on the dizziness. They didn't dare give him. Anything for anxiety because of this whole situation and you bet I am eating on the Prozac until after Thanksgiving to see if this calms down. He has a weightes blanket any ideas for anxiety. I have to really calm all this down.
  14. Sorry I am going to add a bit more. Initially we thought it was the following. Maybe he got exposed to the virus in the hospital we wish we could go back in time that's for sure. In vestibular neuritis, by definition, hearing is unaffected. In labyrinthitis, hearing may be reduced or distorted in tandem with vertigo. ... The symptoms of both vestibular neuritis and labyrinthitis typically include dizziness or vertigo, disequilibrium or imbalance, and nausea. Acutely, the dizziness is constant.Apr 26, 2019 The problem is nothing seems to make it better. He wakes up in the night unbalanced . Moving his head doesn't make it worse or better. He can bend and love and sometimes even run and play with friend but then he is exhausted afterwards. His doctor told the school this could be a long recovery and to try to be as much of a 12 year old boy as possible. The problem iswe have encourages him to build new friendships in the new school and focus on building a repoir with the kids. We told him. If he even had tiny bit of ability to out his efforts there. Next we told him do the math all you can so you won't be held back. but the teacher sees him acting goofy with friend on the playground and bonding with them and gets persnickity and frustrated when he can't write an essay or. Do. All the work. She has taught for 15 years in public school. I just don't k ow how to get accommodations for him. In writing and math while he is recovering. They gave him medical release for PE and electives.
  15. I could try glutothionine I tested him for B12 and he was high so I have laid off the B vitamins as I don't want to. Overmethylate him. I have the mthfr gene and undermethylate so I do B12 B complex shots. Wouldn't dare do that for him Glutothionine and lecithan would be worth a try. My insurance actually pays for acupuncture so if I can get him to try it I am going to see if they can try balancing those limbic points. It feels like brain chemistry. I worry they nicked something in that tonsil surgery or he just couldn't handle the anathesia. I welcome all ideas really guys I am flipping every atone right now It doesn't look like he lost his retained reflexes or his progress from PT this is way different. I took him. Back to his vision therapist and he had tested him. In July now my son is testing 40 percent below what he was weeks ago with ocular motor. So. No diagnosis but he sent a letter of accommodations to the school. We removed his braces and had a brain MRI to make sure no tumor or stroke. Then he would faint sometimes when there is a loud noise and get lightheaded on standing. So we decided to over hydrate and push electrolytes. Still problems so we went to the ped cardiologist and had an ekg and echo. Heart and vessels are fine. He still has orthostatic issues. He has those noise filtering earplugs he can wear and still hear the teacher. It's a charter school so with the 504 they can't kick him out but they can make us leave. The school adminstrator is sympathetic but the teacher is pretty judgemental and has a tone of intolerance. This is crushing for my son I focus heavy on a good breakfast and good sleep. He is so foggy and unbalanced in the morning we feed him. Breakfast and then have him walk on the treadmill holding the sides to get the circulation. Dramamine and meclizine do nothing but make him fall asleep at his desk, it doesn't seem to be effective in that way. Regarding concerta we tried it for 4.months a few years ago he had taken it and while it didn't improve at all his auditory processing or attention it was well tolerated at a low dose. We tried It this fall as he is older now and with a new school it was worth exploring if there was any kind of add component. If there is that component it is pretty mild more like "if I am I interested I will work twice as hard and sometimes school is boring or writing is hard so I will do what I can and fidget." he has a high IQ just can't hear in noise and needs clear directions. Well we only had him on it 4 days maybe it reacted with the anathesia from the surgery the month before or the Norco he was on after the surgery that we stopped 2 weeks before Timeline Aug 12 tonsils, adenoids surgery Then 2 weeks Norco Sept 3Then started new school Sept 18 tried concerta thought he was coming down with a sinus infection and his sister was dead sick so took him off. September 22nd dizziness extreme couldnt walk down the hall. Out 3 weeks of school going to specialist then 2 weeks attending like a zombie for a few hours a day. POTS is scary and yes if by January we may have to fly to. Austin and see if that is what is going on. The cardiogist told us it's too early to freak out about that yet.
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