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Janine and others - I'm desperate for any feedback. I posted before about my son having seizure-type activity. I realize now he may have been having a reaction to the Ativan he's been on for over a year. In January, he kept getting worse and worse. The doctor kept telling us he could take between 2 to 8 mg a day of Ativan if it was stopping the seizures. I realize now it was probably making them worse, and my son (25 yrs old) was becoming more and more confused as the seizures got worse, until in April, he took an overdose, saying he didn't think it was ever going to get better. This is someone who has always had a pretty positive outlook despite dealing with hyperadrenergic POTS for 7 years. Of course, I had to take him to emergency--they would not admit him to the psych/med unit, but only to the psych hospital, where they cut him off of the Ativan cold turkey. He stopped sleeping, and 4 days later was brought back to emergency because of bad convulsions, but sent back. The psychiatrist told me he thought POTS was a psychosomatic illness, and my son has Munchausen's. After frantically trying to get someone to listen and giving them information, trying to get them to call Dr. Grubb, etc. they finally released him to my care on April 27th after a week in the hospital. With family's help, we managed to get him through another week of virtually no sleep (a few minutes a day). Then the nightmares and real withdrawel started. Numb feet hands, tongue, convulsions less in number but more in intensity (I thought he would jump out a window). After speaking to a detox dr. (his primary has bought into the psychiatrist now), I managed to talk his dr into allowing an 8-day taper on phenobarbitol. My son was doing really well at the beginning of the taper (better than I'd seem him in a year) but as it lessoned and stopped, got worse again. The dr agreed to a continuing script of pheno for another few weeks (of 30 to 60 mg a day), but my son has on and off periods of eye and face twitching, jerks, and gets extremely paranoid sometimes. The detox dr told me last Thursday (but said he really shouldn't be talking to me after this- my son is not his patient) that paranoia could still indeed be from the withdrawel but after a few more weeks if he isn't better, maybe it is something more. We are scheduled to see Dr. Grubb on June 9th thankfully after more than a year, but my big fear is that if this is going to take some time for my son to get back to normal, that this will be mistakenly seen as a mental illness, and he will be put on psych drugs that will do him more harm than good. He is still under orders to see a psychiatrist in order for him to be released to my care. They wanted to put him on Depakote and Abilify, an antipsychotic. Before he was put on the Ativan a year ago, he had had two bad med reactions to Adderall (a psychotic reaction that went awy as soon as he was taken off), and seizure type reaction a month later when his beta-blocker was mistakenly doubled by the pharmacy, and he stopped sleeping and was put in the hospital where he was put on the Ativan. Any feedback any of you might have would be very much appreciated. Thanks, --very scared.

Blackwolf - my son also has trouble speaking sometimes, especially when he's "seizuring". The words just won't come. What type of dysautonomia do you have? And what meds are you on? My son has had trouble with everything he's been on - SSRI's, betablockers, and now not sure if any of these recent problems have anything to do with the Ativan. Sorry you're having a hard time. So frustrating when doctor's just blow it off. It has altered every aspect of our lives.

Hello frank - just a short note of encouragement. I'm sure you will get reponses from others re: your wife's symptoms as well as answers about meds. But having someone you love so debilitated and have so little answers, is something i can certainly relate to. It can feel very lonely and so very frustrating. It does somehow help I guess to know that there are so many other hurting people out here just trying to hold on as well. My best to you and your family as you continue on this journey. hang in there!

Alisa - as you can see from the thread I posted earlier this week about seizures and POTS, we are very desperate as well to get some answers. The fact that I'm finding that others are experiencing similar makes me believe that the seizures are in fact related to different types of dysautonomia in some cases. Please count me in for any advocacy, support, etc. I'm not sure what "hypoxic" means, but my son, who is 25, seems to be getting worse, and i don't know how much worse it can get. His faith has gotten him through some very bad times, but it is so hard to understand why he's going through this. I will e-mail you privately with my contact info, but anyone else who is experiencing similar, PLEASE let us know who you are. It is especially scary to me, that because there is such a thing as "psychogenic" seizures, meaning psychosomatic or related to mental illness, i'm very concerned that this not be dismissed or mistreated. The more of you out there that we can find, the harder it will be for this to be dismissed. Thanks so much for your posting! -- Julie

thanks so far to you who have responded. I am really grateful to you. It really helps to know that others w/ POTS may have experienced similar. As far as meds go, he has been on many different meds over the years. The only thing he is on at the moment is 2-4 mg of Ativan. He was on beta-blockers for a few years until the pharmacy accidently overdosed his prescription, and he had a bad reaction to it, so no longer takes that. the other bad reaction last year was to Adderol, which he was changed to from Wellbutrin just a month before the beta-blocker overdose. I thought that maybe he just needed a lot of time to get his nervous system desensitized, but a year later, and here we still are. It has impacted our whole life. his ability to be independent; my work life, etc. Any more experiences re: seizure type activity from others will be greatly appreciated, and I'm sure helpful to any others who may be experiencing similar. Thanks - J

New at posting here - Want to ask a quick question without getting into all the boring details. My son was diagnosed with the hyperadrenergic form of POTS at Mayo in 2000, and has been ill with this since 1998. he is now 25. In this last year, after having a few bad med reactions, he has been having seizure like convulsions. They look like seizures to me, and did to a neurologist when he was in the hospital last spring, but an EEG turned out negative, and we have since been told that these cannot be classified as typical seizures. One doctor described them as myoclonic jerks, but there is a lot more going on than a jerk now and then. These convulsions can go on for hours, and during them, my son can't control his movements, looks like he could jump out of his skin, and gets very confused and fearful. When it's over, he can make sense of things again, but it has been horrible to say the least. this has now been going on off and on for about a year, and seems to be recently getting worse. I need to know if anyone else has experienced anything similar. It might help to know of any similar stories. Thanks so much. --J

Hello Angela - My son and I were at mayo in 2000, so it's been awhile, but after a few days in less than stellar accomodations we found something within a few blocks of the clinic (walking distance for sure) and it was cheap and emmaculate. Hopefully it's still the same. We stayed in the older section (they had a new addition that was a bit pricier), but you couldn't really tell the difference. Continental breakfast each morning. and a small convenience store with a few groceries nearby. No kitchenettes i don't think, but with microwave (in the lobby, don't remember if in room) you could make do fairly cheaply. The name of the place is the Brentwood Inn and Suites, 123 4th Ave., Rochester, phone: 507-288-8011, www.brentwoodinn.com we ended up staying there for two weeks, and they were wonderful. With my AAA discount of a few bucks, I room was something like $50 night, $53 w/ tax I think. Good luck with this. as far as other things, advice, etc. Mayo is a great place, staff are friendly and competent. That is where my son was finally diagnosed w/POTS after 2 yrs of no answers. Mayo is good for those mystery cases, because they just keep adding appt.s and tests, as they rule out things. You don't leave without a pretty good idea of what's going on. But it's still a big, rather impersonal place, and it's still possible to fall through the cracks if your not careful. They were about to send us home because they thought that's what we wanted, before we had answers., and we were a little confused, until we went to the patient advocates office (I think it's called) and straightened out a few things. They are very patient focused and accomodating. But don't hesitate to go there if you have questions you'r not getting answers to. we didn't see Low after my son was diagnosed. I believe it was a Dr. Fealey in neurology. He was helpful in explaining the diagnosis and giving us treatment protocols for our local dr. upon our return home. When you get to Mayo, you will get more info than you even need about the Clinic and surrounding area. We spent a lot of downtime at an indoor mall just a few blocks from the clinic downtown. we didn't spend much money, but it was fun to hang out and get away from the clinic, and a movie theatre right next to the mall. I also went on a weekend south of rochester to a small town where Laura Ingalls Wilder's husband Almanzo's family moved to, if you're into that kind of history stuff. I enjoyed that getaway. Hope this all helps. Let me know if I can answer any other questions.