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Siezures with POTS


stellakitty
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My daughter was diagnosed with POTS in April with a postitve TTT. She has just about all of the symptoms associated with dysautonomia, she is a real mess. The doctor who dx'ed her moved back in June, he told us that her pcp could take care of her. Her pcp sent us to a dr. specializing in adolescent medicine (she's 14) because she apparently didn't know what to do. The new dr. took away her Forinef .2 mg, said she didn't that, she needed to go see a pschyatrists (sp) and gave me a script for Prozac? My daughter got worse without the Florinef, I called her pcp, her & the other dr had a powwow and he gave her back .1 florinef. I threw the Prozac script in the trash. That was approx. 6 weeks ago.

It's been downhill every since then. She developed an awful "tremor" on her left side & her face went numb, this was after walking across our property (okay, it's 2 acres), I took her to the ER, got the standard "is there anything going on at home" and got sent home. The left side of her body did stop "tremoring" for the most part with the exception of her left leg, it just goes all of the time unless she has the muscle somehow engaged in activity. The dr in the a.m. clinic told me it was a nervous habit. Next time I took him a copy of the TTT and some literature i pulled off the web about dyautonomia.

2 weeks later I had to take her to the ER again for severe gut pain, of course they couldn't find anything, she got pain meds, we went home. She had a follow upappt with the a.m. dr. the next day, he admitted her to the hospital for gut pain, wrote this up as a "conversation disorder", had the mental health people come in, ( never heard what they thought, gyn came by & GI, all dr. dx'ed as conversion disorder based on the admitting dr. She was discharged the next day. I will also add, she was extremely nausead, had light & noise sensitivity, very dizzy, & had a horrible migraine. She got Immitrex & Zofran in the hospital for the migraine and nausea, but the am dr refused to give us a script for home. This episode lasted for almost a week.

Last week, we were in the kitchen doing nothing really, she was leaning on the counter top with a magazine, started to shake, said she was dizzy, I had her lay down on the sofa then she started to have a "seizure". Her arms and legs were violently shaking, her pupils were dilated, she was conscious (sp), this went on for about 6 minutes. I had her remain on the sofa for another 20, she got up to eat a bowl of soup and she started up again just walking across the room. I just took her to her bed & gave her the last sleeping left of her script. She went to school the next morning had a "seizure" at school, we went to the er. She had a CAT scan that showed nothing. She was sent home with some Activan. We had a follow up appt with the am dr. the next day, her ordered an eeg she had that on Monday. since her first "seizure" she has had 11 more. We went back to the am dr. this afternoon to get the eeg results, it did not show anything. Then this moron proceed to tell me that the seizure activity is part of her "conversation disorder", we need mental health. I asked him if we could try a different med, other the

Activan, that isn't working, he said no. I said but she needs to go to school, & he said "well I'm not going to give her anything because she's already over medicated." This dr. is upset because I took her to another cardiologist 3 weeks who put her back on .2 Florinef & added some Toprol, we have an appt with him on Thursday. The am dr. also told my daughter that a positve TTT doesn't mean anything & she just thinks she dizzy all the time, hello?

Okay, why do I still take her to this adolescent medcine moron? I'm in the process of changing all of her docs, including her pcp. Unfortunately, it has taken me several weeks to get into another dr. as a new patient. We are seeing the new dr. tomorrow morning. Sometimes ya just deal with what's available.

Does anyone have "seizure" type activity?

Any one have this much trouble with doctors? I asked the am dr. if he read what I brought him, "this isn't a real disorder".

Sorry about the long post, but we've had a rough week, my hubby is in Australia for 3 weeks, I gotta vent somewhere.

Thank you

Angie

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hey angie.

read the post i started called 'uhhhhh' for my experience along these lines. on the one hand, i'm really sorry to hear this is happening. on the other, it's a relief when there's more and more people who have similar things happen.

and yes, many doctors are morons.

ahhh, it feels so good to say that.

justin

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Thanks Justin,

I don't know how I missed your entire topic, I thought I had read just about everything on this board. My daughter has the exact thing you are describing, she is alert & can communicate with me, but has no control over her body movements, it the wierdest ting I've ever seen. As I was finisheing up my initial post, I heard a big thud upstairs, went up to check, it was my daughter on the floor, at it again, this is the second time today, this one went on for about 20 minutes. I've taken her to the er once, but I usually just let it run the course. We live up in the mountains outside of Denver, it takes a good 35 minutes to get to the nearest hospital, just a residual tremor is left by then. The ER docs don't know about POTS anyways.

I did finally get a bp reading on her, (she shakes so much it read), last time her bp was 200/170 pulse 155, this is laying on the floor. She also has an event monitor from the cardiologist, I phoned this in also.

This is a real drag for her. She is 14, she wants to take driving lessons in April, I'm preparing her for the fact that she will probably not be able to drive for at least a year afer her last seizure. She is now negotiating for a belly ring on her 15th birthday, gotta love teens.

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I'm sorry to hear that your daughter is going through all of this, especially at her age. I got sick at the age of 18, and that was difficult enough, even having had most of the teenage stuff behind me = ) I hope that you can sift through the "morons" very soon and find a doctor who can really help you. Have you seen these links to the worldwide physician lists?

http://www.ndrf.org/physicia.htm

http://www.dinet.org/physicians.htm

It would definitely be worth your time to go straight to a doctor who specializes in autonomic disorders- most of us have wasted time with PCP's and even specialists who were more hurt than help, and oh what I wouldn't do to spare anyone this agony!! They really can't help you, because these types of disorders are completely misunderstood by most of the medical field. I'm not sure what area you live in, but I hope these lists will come up with something for your daughter. The faster she gets on the right treatment, the better her quality of life will be. Good luck, and please keep us updated!!

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Just wanted to add that I have had this but haven't had them in quite a while. I was more likely to have them when adding new meds at high doses (when we were in the initial phase of trying to get my medication regimen down). I believe our POTS bodies can't handle too much change at once, either medication or stress, and when things get bad and our hr's get high and adrenaline starts flowing, this is what happens.

I would recommend some things that helped me:

FIRST AND MOST IMPORTANT, you need to take her to a POTS/Autonomic doctor as soon as you can possibly get her in.

1. Near complete rest until things calm down. Walk a little when she feels up to it. Although this isn't a psychological disease, I know that stress and anxiety made things much worse for me. B4 I was dx, I would push and push myself because I couldn't believe this was happenign to me. This made things much worse. Once I relaxed and accepted that for right now, I might have to do a MAJOR lifestyle change, things calmed down a bit.

2. Try and find out what meds are truly helping. To do that for sure, take whatever they prescribed for you and give it to her in either 1/2 or 1/4 the dose. If it doesn't hurt and maybe helps, up it slowly (week by week, I'd say). Florinef gave me headaches/brain chills so I d/c that, and Mitodrine upped my tachycardia. I just take Toprol 1/2 tablet in the A.M. and 1/2 tablet in the P.M. Too much beta blocker can cause things to be worse cause they can tend to lower BP too much. You have to find the right dosage. Some people can't take them either. I find that Ativan does help me immensely and she may need something along these lines for now. If it helps, I wouldn't hesitate giving it to my child if this were happening to her just to at least help her through the rough patches. I look at it like if I have too much adrenaline coursing through my body and Ativan suppresses adrenaline, then it is necessary at those times when I am adrenaline overloaded. If it doesn't, another type of anti-anxiety like Klonopin helps people with POTS, too. Hopefully your doctor will lead you in the right direction. Having said that, there are lots of people with POTS who don't take anxiety meds, too, so go figure??

3. This works for me, not sure about others, but I really have to limit my sugar/carbohydrate intake. I think I'm prone to low blood sugar or jsut ultrasensitive to the adrenalin rush you get from sugar, but eating a lot of protein in the a.m. (tuna or salmon), and throughout the day with each meal, helps me a great deal. Watching her diet and having her watch it will give you good feed back. I know a lot of us here have trigger foods and food sensitivities/allergies.

4. If she wants to walk, let her walk in increments of not more than 10 minutes, then rest, then 10 minutes later if she wants, until she is feeling better. When at my worst, I couldn't walk to the end of my driveway without getting chest pain. Now I'm able to walk 7-10 minutes at a time without grossly aggravating my symptoms. Too much of anything is going to send her into overdrive.

I'm so sorry you are going through this. The only thing worse than having it yourself I would think is watching your child suffer with it. Most people do see a lot of improvement from the time of diagnosis and once they get on a good medication regimen for them and they learn to cope with their problems. I will pray that things get better for you and your family soon. I believe they will, you just have to find the right help.

Good luck and keep us posted.

Hope this helps.

Elaine

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Angie, I got really mad reading your post and the terrible experience that you and your daughter have been through. The doctor story is all to familiar to most of us. Although I don't get the seizures, I just wanted to write and tell you I am SO SORRY it is happening to you and your daughter. I know you must be frightened as well as frustrated. I will keep you both in my prayers that you get some real answers soon. all the best, geneva

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Thank you for all of your replies...The only dr. here in Colorado that I know of who specializes in dyautonomia is the dr. that dx'ed her, now he is gone to research for the CDC in Atlanta. There is another woman living about 30 miles down the hiway who was also his patient, she has POTS also, we're in the same boat. My daughter has a friend , also 14 with dysautonomia, she is going to see Dr. Grubb, her appointment is in April, that's a long time away...

The new cardiologist that she has seen is her friend's dr. also. His office seems to have some knowledge of dysautonomia. The new pcp admitted to little knowledge of this condition, but is willing to play ringmaster with all of the specialists my daughter will be needing and she is more than willing to consult with the experts and learn.

Today has just been cr**. It's 3 pm, my daughter has one of these episodes of convulsions, seizures, whatever ya want to call them every time she gets up to go to the bathroom. I ordered her to remain on the sofa last night after 3 episodes within 5 hours last night, every time she stands she just collapses. I'm just not going to deal with a weekend er situation, if you've ever been on a Sat or Sun ya know what I mean. Been there, done that with an appendicitis with her. Not to mention Er doc have no clue about her condition. I'm gonna call the cardiologist first thing tomorrow, hopefully he can help.

I get angry when I read my own posts about the doctor situation. I'm upset because I let a know nothing peditrician try to treat her for several months. Then I get really upset because there were some days when I would actually start to buy into the whole mental health thing, when ya hear it enough from every doctor she sees.

My husband is going to be so upset with me when he comes home this Friday. He will have been gone for 3 weeks and I have not mentioned a word to him about all of these lastest develops. I did not want him to have to worry about this. He would have taken the next plane back to the States, I don't want him to put his job in any sort of risk, being he has a great career, and new jobs aren't that easy to come by right now.

Angie

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This is my first post here! This has touched my heart! Angie, don't be so hard on yourself. This is a very difficult thing to deal with. I have been diagnosed with POTS, autonomic neuropathy and gastroparesis. I have difficulty walking and have an ataxic gait for this I have been diagnosed with conversion disorder. For a while I second-guessed myself and thought maybe this was my problem. Maybe the doctor was right ! Their is nothing wrong with my CNS or muscles. I know now that it is not true and I am convinced that it has something to do with metabilism and mytochondrial dysfuction. I have felt this for a long time. But I was not ready before to present it to the doctor. I now feel that I have the knowledge and evidence to back this up. Sometimes it takes time to sort through everything and figure things out. Unfortunately, we can't count on Doctors to do this for us either they are morons or don't want to take the time.

It is so sad that we have to bring documents with us to prove that we do have an illness and documents to tell the doctor what it is. But what really frustrates me is to hear that doctors dismiss the evidence that you have presented to them and are so narrow minded that they go with the psychiatric dx. What secondary gain does your daughter get from missing out on living the life of a normal 14 yr old. Being able to do and participate in the activities that her friends are doing. None!Conversion disorder is rare. I feel sad for you and your daughter.

I have had the seizures too. My seemed to be related to stress or overdoing myself. I have not had one in a year. everyone with dysautonomia responds diffirently to meds. It is a matter of trial and error. I take nadolol (beta blocker) and I feel that this has prevented me from having anymore seizure (autonomic crisis).

Make that appointment with Dr. Grubb! It can always be canceled. Maybe you can get her into Mayo clinic in Rochster they have a full autonomic lab. Since your daughter is only 14, I would hope they would make it a priority. Your only a child once!

As far as the nausea, vomiting and stomach pains. It sounds like it could be gastro paresis ( delayed gastric emptying). It is common among dysautonmics. It is diagnosed by a gastric emptying study. :)

I will pray for your daughter and your family. Especially that you are able to find a local Dr. who is supportive with an open mind and willing to learn more about dysautonomia and willing to follow through on recommendations from Dr Grubb or another autonomic specialist.

GOD BLESS!

Dawn Anich

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Angie, I have been following these posts, and I just wanted to let you know that I am really thinking about you and your daughter. I have been there, and I know how frustrating it is to go through all of this, and for her how difficult it must be right now. *PLEASE* make an apppointment with Dr. Grubb ASAP- if there is one doc that will be able to help her, he's the one = ) Even if you have to wait a few months, at least you reserve your space, and you can look forward to seeing him and getting some answers. In the meantime, you could try to locate a physician closer to you from the NDRF list I posted previously, and possibly get in sooner as well. I really hope things get better soon. Most of us would agree that the worst of our illness came at first, and it usually got better from there = )

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Angie, I just want to say I am so sorry to hear what your daughter is going through. And for you to see your daughter like that must be extremelly hard. Main thing is to stay focused and always stay positive. Keep your daughter in a postive state of mind. This condition can play with our emotions as well as every other part of our body. But as long as we always keep fighting and never give up then there is always hope and where there is hope there is a reason to keep fighting. Good luck and please keep us updated............. Sandy

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Hey...

I called the cardiologist office this morning, they said it did not look like a cardio problem, all of her readings on the event monitor were good. My daughter had these "siezure" events all morning, finally went down the hill about 11:30 to the ER, because her new pcp wasn't in today. Well you know the drill, the ER dr. took one look at her and pronounced "panic attack". She ordered some bloodwork and (guess) Activan & Benydril (sp, the allergy med). i told her we had Activan at home, she dosed her anyway. Gee, what a wasted trip. Yeah, she quit having "tremors" (that's what ER termed it) because the dr. really juiced her good. We've been home 2 hrs & my daughter is shking like crazy. Top it off, i dropped my bp machine on the tile floor, now its totally busted.

Maybe I"ll have some better luck tomorrow. I'm for sure gonna call Dr Grubb. Geez, I should have signed my board name as Eeyore, I feel like Winnie the Poohs moaning donkey friend.

Angie

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  • 2 weeks later...

Dear Sellakitty

I have allot of these attacks and they always start on the left side. It sounds to me as if your daughter is under allot of pressure. I know how overwhelming all these horrible physical changes can be. They frustrate you and depress you. I go to an amazing doctor and he confirmed to me that the left side of the body is connected to your emotional area of your brain. These attacks are the way your body is handling all these stresses. It is so horrible I can sake for hours on end and have to go for injections to get my body to stop. The Florinef just made my attacks worst and I am so glad I am off it. It was ****! The nausea and dizziness is just from the pots. The painful stomach is also from the pots. I have not been able to touch my stomach for years. It has taken me 9 years to find a excellent support group of doctors. Unfortunately it is a fact that 99 % of the doctors know anything about our problems and actual don’t CARE! Were I live most of them just want your money and don’t care a dam if you get healthy or not. As I said I have 9 years of experience and thousands of rands wasted.

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Dear Ling,

What type of injections do you get for the shakes? My daughter's leg shakes just about all of the time. We did find a new pcp who is willing to help us. She gave her a script for nuerorotin (sp) to see if this will possibly help with the shakes. She took her first dose yesterday, said it calms a little and it did give her some relief with her gut pain, from a 8 to a 7 on the pain scale. Her new pcp also gave her a great nasal spray for migraines and levesin (sp) for b/t gut pain. This is a big improvement over the doc she was seeing before, he would not give her anything at all for her symptoms.

I don't know what part of the country you live in, the dr.s here do not strike me as greedy, just ignorant.

Angie

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Dear Sellakitty

I live in South Africa and have had the most horrible time with doctors. I have wasted thousands of rands on medication that does not work. I have the most wonderful doctor at the moment and she gives me aterax injections, which helps almost instantly. Hurts like **** but it works. Has your daughter seen a dietician yet? I use to have migraines every day or a solid one for a few days in a row. Since I have left sugar and changed my diet I don’t get migraines any more only head aches. The stomach pains could possibly be irritable bowl syndrome, which can also be helped with a diet change. If you would like to e-mail me direct you are welcome to stoltz@cri.co.za. I could possible give you all my doctors’ details. I have the most amazing team of doctors in my life at the moment. The sad part is that it took 9 years to find them.

I hope your daughter feels better soon. ;)

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Hi Angie,

I came across this publication today and thought it might interest you. It's in Spanish, but you can translate it by going to an online translator and typing (or pasting) in the web address and then clicking translate from Spanish to English. Online translators aren't the best, but hopefully you'll be able to get the gist of the article.

Hope this helps,

Michelle

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Michelle,

Thank you for the article, I was able to us one of my husband's programs to get most of it translated. I've have spoken with the lady that runs the DYNA kids group, she tells me the siezure/convulsion stuff is very common with these kids. My daughter did start neurotin (sp) about 2 wks ago, she saw a neuro doc on Fri, he upped her meds. So far it hasn't stopped the activity but when she does have an event it only lasts about 2 minutes as compared to the 10-20 minutes before.

Some people are so stupid...My daughter has an acting class, they do alot of standing. She told all of the teachers in the beginning of the school year about her condition and how she can't stand. For the past couple of weeks this acting class teacher has just decided she doesn't have a "real condition", she's lazy, he's been telling her to stand up for the skits, she sits when she gets really dizzy. This morning the teacher made her stand up again to do a skit, well, she had one of her "siezure" events. He was the one who freaked out and ran down the hall to get the school nurse! Once she finished her "event", she took a bow, all of the students applauded, then she went down to the nurse's office to rest. She returned to the class 20minutes later, she got hugs from everyone and a chair from the teacher. I am proud of the way my daughter handled this with her humor and the kids in her school are great.

Just thought I'd share

Angie

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Your daughter sounds like a gracious young lady who can be an inspiration to us all.

I'm glad to hear the article helped and that your daughter has seen some improvement in her condition. Hopefully she will continue to see better days ahead.

Michelle

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A great example of the resillience of children! I hope that the teacher finally learned he was WRONG. A gracious adult would have also apologized... but perhaps that is too much to wish for.

Nina

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Wow! Some people really aren't too bright- if my child's teacher acted this way I would certainly not be to happy either. But I am so proud of the way your daughter handled her situation, and she is incredibly brave to be going through this at her age- and going through school like a champ :P

I hope things continue to look up!!

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