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Help for daughter, ADHD


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On 12/17/2020 at 6:39 PM, CallieAndToby22 said:

Psychiatrists are very quick to diagnose children with adhd. The last psychiatrist I was seeing was charging $250.00 for 30 minutes and I finally realized he was piling tons of meds onto me. Anyhow I read his reviews and they were all from mothers who were angry he put their children on stimulants. I'm not saying it doesn't exist, nobody attack me...... But dysautonomia is infamous for giving a sense of "anxiety" b/c the. body is overproducing adrenaline and sometimes I have adrenaline rushes for months straight. Dysautonomia also causes serious brain fog and mental fatigue and this makes it very difficult for me to concentrate, personally. Clonidine dropped my blood pressure and made me very sick and insomnia as well. Well brutrin can be stimulating for some people but why would that help adhd? If you see a cardiologist I would definitely talk about her new symptoms and the medications she was put on, if adhd is a possibility and who he/she would recommend to see......... I'm very tired I'm sorry I'm just trying to offer my best advice. All I have is a beta blocker and very very low blood pressure. 

Thank you very much for your information, I just checked back, didn't realize there were more replies.

 

I agree about the ADHD diagnosis, and I also know that it's a really imperfect science and Autism spectrum, learning disabilities, processing disorders, or just the brain fog from no sleep and hypoxia can look like ADHD.  We were pretty careful about getting the diagnosis but also pretty cautious now about believing it on face value.  We do know there is something up in addition to the POTS, although it might be connected, and it's so hard to tease it all out.  We dropped the Clonidine like a hot rock because it made her so sick, we figured out it draws potassium so she had some bananas and felt massively better, but we'll not go near that again.  She is now using a very low dose of Doxepin, it is not addressing her focus issues but it is allowing her to sleep for the first time -- well, in living memory!  I am hoping when we start school again this week the sleep will help her focus.  

We've been checking her bp as per doctor's request, there have been some mornings where her pulse rate is 54 lying down and then 157 standing up.  She can't stand for long enough on those days to test it a few minutes later.  Frankly, I don't know that this didn't happen before the Doxepin, though, as we didn't directly test, just went off how she felt and acted.

I think you are absolutely right about the adrenaline, I think it's hard for us to untangle it all because she's never really known things to be any different so we don't have a baseline to compare.  We do see a cardiologist soon.  I also think it's obviously very stressful to have a chronic medical condition and that has to be factored in, also.  Her sister has Type 1 diabetes so there is a lot of daily reasonable stress from all that.

 

I really appreciate you giving me your opinion.  Very helpful, and if you have any opinion on the above that will also be appreciated.

 

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On 12/20/2020 at 6:39 AM, flowntheloop said:

Hello there, and I'm so sorry your daughter is struggling. I am autistic (with ADHD symptoms), and I had a very similar reaction to Wellbutrin (when I was in my mid-twenties); I was bouncing off the walls, not sleeping, and very anxious. I now take lorazepam (aka Ativan) for sleep and panic/tachycardia attacks (have done so off and on for nearly a decade now, and it is an absolute lifesaver). I take a very low dose (unless I have really bad attacks), and I have never had an issue with dependence or withdrawals. I even voluntarily stopped filling my prescriptions for several years when I had a lull in symptoms. Maybe I'm different from other people, but I have never felt high with this medication. There are some weeks/months where I don't even take it.

In terms of potential for abuse, it is a Schedule IV drug here in the US, meaning the likelihood of dependence is way less than medications like ritalin (schedule II). It is also a long acting benzodiazepene--and in my case way more effective than short-acting benzodiazepenes like xanax (which actually worsen my anxiety/sleep symptoms). Just remember that all bodies are different, and some taboo medications may prove useful for SOME people. Just something worth considering.

I also take a high quality (broad-spectrum CBD oil) and practice meditation/breathing exercises twice a day (and at bedtime).

Note: I can't take beta blockers due to my really low BP. I'm on my way to a cardiologist in February, and it can't get here soon enough!

Thank you for this information, I just checked back on the forum and saw replies, I didn't realize more people had come on here to help, sorry for the delay.

 

I will keep that in mind, then, about the Atavan.  Also good to hear you don't have to increase the dose periodically and can take a break during certain situations.  If it comes up I won't reject it, then.  Also interesting to hear about how things work with autism and ADHD.  Great info here, and I agree that physiology varies so much, I see that all the time in all my kids.  Thanks a ton!

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8 hours ago, LisaMarie said:

Thank you very much for your information, I just checked back, didn't realize there were more replies.

 

I agree about the ADHD diagnosis, and I also know that it's a really imperfect science and Autism spectrum, learning disabilities, processing disorders, or just the brain fog from no sleep and hypoxia can look like ADHD.  We were pretty careful about getting the diagnosis but also pretty cautious now about believing it on face value.  We do know there is something up in addition to the POTS, although it might be connected, and it's so hard to tease it all out.  We dropped the Clonidine like a hot rock because it made her so sick, we figured out it draws potassium so she had some bananas and felt massively better, but we'll not go near that again.  She is now using a very low dose of Doxepin, it is not addressing her focus issues but it is allowing her to sleep for the first time -- well, in living memory!  I am hoping when we start school again this week the sleep will help her focus.  

We've been checking her bp as per doctor's request, there have been some mornings where her pulse rate is 54 lying down and then 157 standing up.  She can't stand for long enough on those days to test it a few minutes later.  Frankly, I don't know that this didn't happen before the Doxepin, though, as we didn't directly test, just went off how she felt and acted.

I think you are absolutely right about the adrenaline, I think it's hard for us to untangle it all because she's never really known things to be any different so we don't have a baseline to compare.  We do see a cardiologist soon.  I also think it's obviously very stressful to have a chronic medical condition and that has to be factored in, also.  Her sister has Type 1 diabetes so there is a lot of daily reasonable stress from all that.

 

I really appreciate you giving me your opinion.  Very helpful, and if you have any opinion on the above that will also be appreciated.

 

I developed IC when I was just 6 years old, still have it worse than ever. Then somewhere I developed a rare chronic blood cancer called Essential Thrombocythemia and they don't know how to treat it except suppress the immune system, and upon doing that, I have gotten so sick with dysautonomia I can't leave my bed much. The dysautonomia started around 2008, I asked for a beta blocker and nobody listened they put me on zyprexa to knock me out and I ended gaining like 100lbs that I have since lost and it was brutal withdrawing from the zyprexa. Most of my life I was treated like a psych patient and I knew deep down all these conditions were connected and that they WEREN'T psychiatric. So I get concerned with other people going down that path. I  went to a major medical facility and the first thing he told me was to see a psychiatrist and I refused, he got mad, but I had videos of me having seizures, movement disorder, severe fatigue I couldn't talk, other neurological things and my platelets tested 600,000  but he didn't look into it. Anyhow, I hope your daughter gets help. 

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On 1/3/2021 at 2:47 PM, CallieAndToby22 said:

I developed IC when I was just 6 years old, still have it worse than ever. Then somewhere I developed a rare chronic blood cancer called Essential Thrombocythemia and they don't know how to treat it except suppress the immune system, and upon doing that, I have gotten so sick with dysautonomia I can't leave my bed much. The dysautonomia started around 2008, I asked for a beta blocker and nobody listened they put me on zyprexa to knock me out and I ended gaining like 100lbs that I have since lost and it was brutal withdrawing from the zyprexa. Most of my life I was treated like a psych patient and I knew deep down all these conditions were connected and that they WEREN'T psychiatric. So I get concerned with other people going down that path. I  went to a major medical facility and the first thing he told me was to see a psychiatrist and I refused, he got mad, but I had videos of me having seizures, movement disorder, severe fatigue I couldn't talk, other neurological things and my platelets tested 600,000  but he didn't look into it. Anyhow, I hope your daughter gets help. 

I'm so sorry for what you had to deal with,  and, yes, I have seen a lot that follows that pattern.  Our high level research and therapy tech in the U.S. is amazing, the things we can do are astonishing.  But the medical professionals who have to make all of it apply to actual patients sometimes aren't up to the job.  When you get a good doctor, it's fantastic, but most are "C" students, just average people who are maybe in above their heads.  The problem is that they can't just openly recognize that and work to get better, they so often seem to cover for not understanding a situation by blaming the patient.  There's a great book called Black Box Thinking that explains how the more important it is that a person not make a mistake the more likely it is that they won't be able to recognize it when they are in the middle of making one.  It's a real system problem.  Thank you for bringing up your concerns, we definitely are on the lookout for what you are talking about but it's good to have a reminder.

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