Trach

I hear your pain. My older sister is a well respected doctor. Prior to her retirement she taught at a top rated medical school and saw patients at a highly regarded hospital. Yet, she really never accepted my diagnosis. When I showed her my red/purple legs/feet her comment was "lots of people do that". (my sister is a pulmonary doctor). I had emailed her Dr. Grubb's and Dr. Raj's literature to no avail. It wasn't until Jane Brody wrote the article in the New York Times a few months ago about POTS that my sister finally accepted the diagnosis is real. Go figure. I hope you can find another doctor. It is impossible to convince close minded doctors.

I totally agree with KCmom. Considering the problems you have already had with your school counselor, there may be a chance that she misinterpreted what the doctor said. As i told you before, our school district was great to work with. However, there were still instances where some medical issues were lost in translation with my daughter's school. (After my daughter started passing out, I told her wizened "hard core" school nurse what to do if Rachel fainted. Her nurse brushed me off as if I was crazy - she had seen hundreds of kids faint. A few weeks later I received a call from the school that Rachel had fainted. When I got to school - there were TWO ambulances in the driveway! My daughter was fine but the school nurse was freaked out! The reason I am telling you this story is that school personnel do not listen even in the best of situations. Sorry for the digression.... If your doctor already signed the required forms for 504, that is all that is required by law. I have never heard of a school contacting a doctor directly without the student/parents present. I have friends who have seen Dr. A and absolutely love him and his office staff. So I know you will be in good hands. I am so sorry you are having such a tough time with your school. I hope your parents will be able to meet with the 504 director and get these issues worked out. Hopefully they can also clarify what the doctor told your counselor.

My oldest daughter was 12 when my younger daughter started to get migraines. Two years later my younger daughter was diagnosed with POTS. Sometime during that time my symptoms also began to worsen. My older daughter had a very difficult time. She seemed to be exhibiting many of the stages of grieving. Although she was against counseling at first, she agreed to go once. That one appointment turned into several more. Getting a teenager to counseling can be difficult, but if you find the right counselor the relationship can be amazing. The counseling sessions seemed to lift a burden off of my older daughter. If you do decide to try counseling and your daughter is against the idea, make some kind of deal with her to try counseling once. My youngest went kicking and screaming on the way to her first counseling appointment and walked out all smiles when it was over!

I am so very sorry you are having such a hard time. It is hard enough to deal with being sick on top your school giving you a difficult time. Since you live in Virginia, have you or your parents contacted DYNAkids? DYNA is based in Virginia and may be able to offer local advice. I looked up the Virginia website for 504 complaints. If you are having a problem with you 504 coordinator at your school, then have your parents contact in writing (email) the school district's 504 coordinator. If possible detail every meeting your parents have tried to set up with the school counselor, your diagnosis, and modifications needed under your 504. I would consider cc'ing your principal, your counselor, and possibly your teachers. If you are still having a problem then you can file a complaint as follows: File a complaint with the appropriate regional Office for Civil Rights. For additional information, contact: U.S. Department of Education, Washington, D.C. 20202-1100 (800) 421-3481 www.ed.gov/ocr E-mail: ocr@ed.gov Some parents have resorted to engaging an education advocate to represent your interests. DYNA may be able to recommend a good advocate, if needed. One of my friends had to have her daughter's neurologist on a conference call with the advocate and the 504 committee, because the school was giving her daughter such a difficult time. We were in a school district that was very cooperative. However, there have been so several instances where school districts have used every roadblock possible for students with dysautonomia. Many of these school districts did not begin to make the proper accommodations until threatened with reporting to state or federal officials. You deserve the right to accommodations. Do not let your school counselor's lack of availability get you down. Hang in there, life get better. . Make sure you take care of yourself first.

My daughter has always eaten significantly more during a flare or migraine. The worse the POTS flare or migraine, the more she eats. She exhibited this type of eating behavior before she was on medicine for migraines and throughout her med changes. My daughter's doctor believes the extreme eating is due to a dysregulation of the hypothalamus. Whenever my daughter was hospitalized and saw staff neurologists, the doctors were shocked as to how much she ate (Especially since she is not overweight) and the temperature of the room (55 degrees!)

I am sorry - the article did not post. Hopefully I can find out what I am doing wrong and get you that information.

Brenda I found this article regarding the national pediatric guidelines for migraine treatment: http://www.childrensmemorial.org/ce/online/article.aspx?articleID=192 The article states that triptrans are allowed. I hope this helps! Trish

Potsgirl, I am so sorry your headache has been going on for so long. I know how unbearable the pain can be. After the last block i had, I felt fine after a few hours. The block doesn't always work immediately - the full effect can take several days. Ultimately the pain went away. When the pain came back I saw the pain doc again and he froze the occipital nerve. The procedure was strange but painless. Recovery was not a problem at all. My daughter usually takes clonazapam before her blocks. Her doctor deadens the area with a lidocaine gel for about 30 minutes before the injection. After the injections (4 in her forehead area) we drove home (2 hours) and my daughter went to school the next day. Although my daughter has the occipital stimulator, her battery is dead. We are waiting until summer to replace it. I have learned to ask in advance if the pain doctor/neurologist performs blocks on the forehead area. For some reason, many doctors avoid the area and my first doctor appointment was a waste. I wish you good luck! Brenda - is your daughter's doctor a cardiologist or a neurologist? Are you in an area where you can see a pediatric headache specialist? I learned more from my daughter's headache specialist in the last four years than from the last 30 years of seeing my neurologists. The only reason my daughter is thriving today is because of her pediatric neurologist. There just has to be another way to treat your daughter's headaches. What do the doctors say if you request migraine medicine?

It's ironic that this post was started. My neurologist replied to my email plea for help a few days ago. I just finished replying to his last email before I signed in to the site. I live with chronic daily headaches/migraines. However, last week I tried florinef, got a massive migraine, (when I get a migraine it never goes away), and after 8 days of horrific pain, emailed my doctor (office closed for the week) and requested steroids and pain meds to avoid the ER. Since I have been his patient for years and have only recently resorted to this pattern of steroids and Stadol the last few months, my doctor is understandably worried. My doctor recently had a patient whose stomach ruptured (luckily he had admitted her to the hospital) from too many NSAID's and steroids. Thankfully, I had already started the process to see a pain management doctor in Houston who will give me nerve injections/block next week. I got the pain medicine and will make it to next week for the block without the steroids. I have a question - Dr. Blitshteyn recommended I find an OB/Gyn who can perform a special test to see if I am in early menopause. If so, is the treatment any different for migraines? At first effexor was a miracle drug for me and then topamax, but my headaches came back. Ultimately, the best success I have had treating my headaches is with a pain management doctor. Although he is too far for me to travel now, Dr. Gabor Racz at the Texas Tech International Pain Center helped me tremendously. He performed a scalene block and froze my sub occipital nerve. I no longer have the pain at my temple and ear (scalene block) nor have the intense pain going through top of my head (occipital nerve procedure). The only part remaining is the orbit above my eye. I was supposed to go back for a procedure in September, but my POTS flared. I was amazed when I visited the Tech Pain Clinic. My friend whose daughter has POTS recommended me to Dr. Racz. The Fellow who assisted during my procedure completed his internship and residency at Cleveland Clinic. I was also pleasantly surprised by the clinic's pricing. Due to insurance issues (one procedure a day) we paid cash for one procedure. The block was probably one third of the cost of the same procedure in Houston.

Thank-you for your suggestion. Thankfully, my EEG was clear. One of my older sisters is epileptic. When the tremors, jerks, and twitches started, I was nervous, because my symptoms resembled a milder version of my sister.

For those of you who twitch periodically, do you have pain after the twitches stop? If so what do you take? My twitches came roaring back recently. First with tremors and then twitching. Now the pain in my left leg is so severe it is difficult to walk.

It sounds like you have been the peacemaker in your family, but with your illness it is now impossible to do so. I can empathize with your position. I recently sent the article below to my husband and family members who do not seem to understand. If the link doesn't work, go to bobisdysautonomia.blogspot.com and then click on " what is dysautonomia". This article helped my family better understand what I feel like every day. http://bobisdysautonomia.blogspot.com/2009/09/dysautonomia-invisible-illness-my-arse.html. I also have problems with perfume - it is a major trigger for me. Do you ever email or text your inlaws/family members? The easiest way to address the issue is to explain to them that certain smells such as perfume can trigger your syndrome, and you would appreciate if they didn't wear any perfume the next time they visited because you would like to be able to spend time with them. Send this note in a text or email to everyone. The counseling recommendation is a great idea. My husband and I are in the process right now. I honestly do not know how it will end. I totally understand what you mean about not needing the extra stress.

In addition to POTS and vaso vagal, I found out part of my migraine pain was caused by an inflamed trigeminal nerve. The pain specialist figured it out because I had frequent left ear pain which may have contributed to my dizziness. (everything hurts on my left side - head, ear, leg, etc). A scalene block takes the pain away for approximately two months at a time. Unfortunately, the dizziness has not improved, but I hope you find an answer soon.

Cleveland Clinic recently conducted a review of its pediatric dysautonomia patients. The most common problem was sleep disturbance. I understand studies on dysautonomia and sleep are ongoing at Vanderbilt. I have had a problem falling asleep since I was a teenager. Luckily benedryl worked for years until my POTS flared. Now I take tizanidine (muscle relaxer) and klonopin. Besides migraines, insomnia has been my daughter's greatest battle. We have seen 2 sleep specialists, gone through all of the sleep hygiene steps, tried biofeedback and nothing worked. If my daughter does not sleep, her POTS and migraines flare. She takes trazadone, clonidine, and tizanidine for sleep and POTS. She now swims 2 1/2 hours during the week, and she still has problems with insomnia. I truly believe her insomnia is a brain issue. (and possibly genetic) Luckily my daughter's neurologist understands that my daughter has to sleep. The sleep specialists we saw did not understand at all. They told us she was going to bed too early. So we moved her bedtime to later and guess what.......she flared!!

Thank you for posting the book. I just started seeing Dr. Blitshteyn for phone consults and found her to be very understanding and helpful. I look forward to reading the book.

If I stand more than 5 - 7 minutes the first warning sign I have is the tingling in my hands and then I lose all feeling. If I sit down and get my legs up, the circulation returns to my hands. I was also told it was due to my dysautonomia/reynaulds.

When we took my daughter to see Dr. Grubb she was 10 years old and had been diagnosed by her pediatric neurologist 6 months prior to the appointment. Everything Dr. Grubb predicted came true. He said my daughter would get worse before she got better and that she would not start to improve until her growth spurt slowed. At that time my daughter was approximately 5'2". Three years later she reached 5'8" and her POTS flares began to improve and she returned to school occasionally. It has been four years since she saw Dr. Grubb. She is now 5'9" and much more stable. On the advice of Dr. Grubb, she is on birth control - she only has her periods quarterly because her POTS flares are much worse during her periods. She is still on all of her POTS meds. I know your son is receiving great care, but I have many friends who have taken their child to another doctor/institution for a second opinion. I have had many friends who have sought a second opinion at doctors listed on the dinet site. Sometimes it just takes a "fresh set of eyes" to look at a case.

Another alternative, I understand that Dr Thomas Chelimsky formerly from the autonomic center at Cleveland Clinic is now at UW Milwaulkee. His wife, Dr. Gisella Chelimsky is joining him in January. I have several friends who have had very good experiences with the Chelimskys.

Thank you for being brave and giving me inspiration. I haven't had the guts to use one but know I would feel so much more independent if I did.

I am at that point right now. I am basically homebound and my husband is not adjusting very well. Did you also get a handicap parking permit?

I recently purchased a rower on the advice of Dr. Blitshteyn. I did not do very well on the stationary bike, but feel much better on the rower. I just row as long as I can and then take a break. Dr Levine's theory of "pushing through" to a targeted heart rate does not work for me - triggers a massive migraine.

I don't know if each state has different regulations, but I understand in our state pediatricians can still administer IV's. If possible, would your pediatrician try a saline IV in his office and see if it worked? Or as an alternative, can you go to an infusion center instead of the ER? Our pediatrician has a separate room for IV's and has been very accommodating. I have a few friends whose children are homebound and home health delivers and administers the fluids at their house. I do not know what the qualifications were for home health, but I am sure your doctor may have some options. Although DHE is an old drug it is still used quite frequently to bust migraines. My younger daughter usually took up to 5 days in the hospital to bust her migraine using DHE , IV Toradol, and iv zofran, but my older daughter's headache would bust with only a few doses. I have a bottle of Tigan for nausea that my daughter tried but it did not work. I don't know anything about the drug, but it is an option. I could not live without phenergan. Zofran gives me migraines. I hope your son gets relief soon.

Did they give you IV DHE for the migraine along with the compazin?

The first time my daughter had surgery the anesthesiologist freaked out because it took three times the normal dose for her size and weight. Luckily her neurologist was in the OR and walked him through her POTS issues. The second time she had surgery the anesthesiologist was prepared for her strange biochemistry, but the surgery was much more extensive. My daughter was given morphine for pain and it did not work. The second pain medicine ordered did not work either. So she went almost an hour without any pain medication until the surgeon finished his surgery and would order another medicine. My sister had the same issue with morphine so the surgeon immediately believed us. I really don't think the hospital staff (and we were at a large Children's hospital) had ever dealt with a patient where morphine did not work. Although the staff was very kind they were skeptical during the time my child screamed in recovery with 20+ other children. Since that time I have talked to many Potsies who have had the same problem with morphine. We met with my daughter's surgeon a few months ago and he said the same thing has happened on susequent POTS patients. The surgeon also said he always adds a month to the recovery period for POTS patients - it just takes us longer to rebound. So, if I can offer any advice, make sure your docs are aware that you may react differently to post op pain and have a plan in place.

Mully2014, 1. Has your doctor written any instructions to the school? Our doctor used the list from the Dynakids website regarding possible modifications and tailored the modifications to fit my daughter. My daughter has extra time to make up her homework and does less when having a flare. 2. We have a small support group of parents who have kids with POTS in the Houston area. Some school districts have been great to work with while other districts have been absolutely horrible. We have provided copies of IEPs from other kids in our support group to provide support/ideas for parents when they have a problem with their child's school district. It may help to get copies from others from your state. Debbie Dominelli at DYNAkids can offer a lot of guidance in this area. 3. One thing I want to emphasize is to make sure all communication is made by email. Even if you or your parent have a phone conversation with someone at school, follow up the conversation with "this email is to confirm our conversation today that etc. Etc". We have had a few parents who were forced to hire an education advocate for their child. The first thing the advocate tells everyone is to put all communication in writing via email. If all communication is in writing, you will have less chance of a misunderstanding down the road. I am so sorry for all of you who are in school. I know how difficult and stressful your life is right now. The most important thing is to take care of yourself.