LisaMarie

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.

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!

On 12/19/2020 at 5:55 PM, TheManzWitThePlanz said:

hey i hope your daughter is okay I'm 13 so I cant exactly help but I have adhd so yeah

Thanks for your thoughts, very considerate of you!

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.

3 hours ago, cmep37 said:

Has your doctor ordered a 24 hour BP monitor for your daughter?  It might show these weird highs and lows that a lot of us have.  My BP is generally on the low side (100/60 when resting, 100/80 when standing) but it can be very erratic, especially if I'm in a flare.  My GP has ordered a 24 hr BP monitor a couple of times after seeing my BP very high/very low in her office - the monitor was able to pick up these spikes and dips but it reassured us that neither lasted very long!  

I agree with @Pistolabout starting on a low dose of any medication and working up - my problem is usually that a low dose is ineffective and a higher dose that actually works causes side effects!  The joys of dysautonomia! 

No, I didn't know that was an option, thanks!

46 minutes ago, Pistol said:

I have never heard of it either but just looked it up. Sorry - I get what the test is but have no words of wisdom. I always am for checking into things, though, since it may pinpoint what causes her problems. 

Sounds right -- thanks!

2 minutes ago, Pistol said:

Which test are you referring to? 

Sorry, he said it was a P450?  Something about a genetic test to see how she metabolized medication.  Never heard of it.

2 minutes ago, LisaMarie said:

It was a pretty bad experience, I'm grateful we had a pediatric GI doctor that was also surprised and tapered her off it. That's probably why we haven't tried to see specialists again, the Gatorade has worked largely for ten years so I didn't want to get back on the merry go round.  The current doctor is suggesting low dosage to start, which is good, and has ordered a NP450

Oops, a P450. 

5 minutes ago, Pistol said:

WHAAATT? 😵 I am shocked! Elavil is a potent med, and I cannot imagine putting a 6 year old on that!!!! --- 

It was a pretty bad experience, I'm grateful we had a pediatric GI doctor that was also surprised and tapered her off it. That's probably why we haven't tried to see specialists again, the Gatorade has worked largely for ten years so I didn't want to get back on the merry go round.  The current doctor is suggesting low dosage to start, which is good, and has ordered a NP450, so at least he's aware.  He suggested we test her BP twice a day before and after starting.  From my experience, though, she doesn't have a blood pressure problem, she has a blood pressure regulation problem.  Her bp reacts poorly for the situation, so we could see fine numbers all around but still have an issue at 3 a.m. while she's asleep. So I'm not sure that will be a help, but well try it.  If you have any suggestions for getting that kind of baseline, or if you have an opinion on the test, I'm all ears.  Thanks for all your help.

4 minutes ago, cmep37 said:

I've tried that one and amitriptyline (both are tricyclic antidepressants) but both raised my resting HR from around 60BPM to around 90 BPM) making my POTS symptoms much worse as I still had a doubling of my HR on standing.  They did help my sleep though and my Mum (who has HSD but not POTS) sleeps very well with 75mg of Amitripyline - it also helps with her pain levels! 

Hmm,  this is not good to hear. When she was 6 a neurologist (before the POTS) diagnosis, put her on a very high dosage of Elavil and it was super bad.  If they are similar I'm reluctant to let her even try it.   So complicated.  Thanks.

On 12/14/2020 at 11:00 AM, cmep37 said:

@LisaMarieWelcome to the forum!  @Pistol has given you some really good advice.  I had POTS symptoms from about the age of 10 was only diagnosed 5 years ago (I'm 42 now!).  One thing I would add is that it's important to manage your daughter's periods.  Anything that reduces blood volume makes POTS worse.  As a teenager I would really only have symptoms during and after my period.  I found running 4 packs of the contraceptive pill together and only having 3 periods a year helped a lot.

Another option to help your daughter's concentration is Modafinil (Provigil).  I was prescribed this as I was really struggling with fatigue and it did really help with my brainfog although I found the effects wore off over time.  You need to take it first thing to allow the effects to wear off during the day - I think the half-life is about 16 hours.

The thing that has helped me most with sleep is Trazadone - it's an antidepressant but I take it at a lower dose (100mg) than that prescribed for depression.  if I take it between 6-7pm I can generally get to sleep between midnight and 1am and I have longer periods of sleep - before taking it I wouldn't get to sleep until 3am and jolt wake every hour, only getting about 3-4 hours in total. Now I get about 6-7 hours most nights and I'm not groggy in the morning.

That really resonates with her experience, thanks, will look this up.

On 12/14/2020 at 8:47 AM, p8d said:

I am sorry that your daughter is suffering through this illness now after doing well before. I have hyper POTS and after trying every sleeping med the only thing that helps me is extremely low dose mitrazipine. I take 1/4 of a 15mg tablet which is the lowest dose available. It’s an interesting drug because at higher doses it’s an old school treatment for depression but at low doses it acts an antihistamine and is used to treat insomnia in the elderly (I think). It’s not addictive. I know I feel absolutely dreadful without decent sleep. In me it raises my BP if I take too much but I have extremely labile BP. For the high norepinephrine in my blood I take guanfacine ER. That is drug used for ADHD in children and also as a treatment for high blood pressure. It lowers BP so may not be appropriate for your daughter but worth investigating with your Dr. Does she wear compression hose, salt load? If you get a tilt table test request that they check her catecholemine levels including norepinephrine but this test has to be done supine for 10-30 minutes and then after being upright for 10-30 minutes. If they just take it seated it is not accurate and she won’t be treated for elevated norepinephrine *if* she has it. I hope that you have access to a knowledgeable Dr. 

Wow, grabbing a pen and paper for that, great info, thanks!!

Ashc, Thanks so much, I'll look that one up.  We've had a recommendation of doxepin, the doctor says it raises blood pressure but I'm googling that it may lower it on standing, which would be the thing she can't tolerate, obviously.  Appreciate your help.

Well, we'll skip that one, then, but still lots of great info.  Thanks, and I will!

That's unbelievably helpful, thank you!

I think the Wellbutrin/Clonidine combo is this doctor's automatic go-to for ADHD with anxiety, and he just didn't think it would be necessary to adjust for the blood pressure issues.  It made her very, very sick at an extremely low dose.  In a way it's good to know that is "normal" for the situation.

She has not had a tilt table test, and I guess after all this time we should push for it.   I

Thanks also for the notes about listening to your body and not "powering through", that is good reinforcement for what we've been seeing.  Our biggest challenge now is making sure she is in a good place to drive every time she does.

I have worried about using Ritalin because stimulants do seem to tank her -- she can't drink caffeine, etc.  It's great to know that's a possible option.  Will also look up Ativan.

Sorry for the long post,  your advice is exactly what I was hoping for, some info to help us navigate this.  Thank you very much, and have a wonderful night.

Hello, everyone.

Have read from DINET over the years, it comes up in searches, but joined the forum today to see if anyone had some advice for me.

My daughter is 17, at age 6 we had a cardiologist diagnose here with "POTS-like" dysautonomia.  She has been able, all these years, to keep her symptoms controlled with Gatorade daily.  She is also active.

However, as an older teen she is identifying that she has trouble with focus and anxiety, and has had for several years.  We talked to a doctor and he prescribed Wellbutrin for ADHD and anxiety, and Clonidine for her to sleep.

He told us the clonidine dosage was very low so it shouldn't affect her blood pressure much, but she's always had a hard time sleeping and a harder time with her bp at night, and it just wrecked her.  She fell asleep, but was up ten times a night and then felt horrible, we stopped but she still felt bad.  We read that it depletes the body of potassium so she took some and felt drastically better within a few hours.

Now she is only on the Wellbutrin, it seems to help with focus and anxiety but she is keyed up all the time and her sleep is out of control, she got three hours last night, maybe five the night before.

We have a referral (finally) to a cardiologist, but what we are finding (you won't be surprised) is that doctors know little about this, aren't really interested, don't think it's much of a factor in treating other things, etc.  It would be great if anyone here could give an opinion on the interaction of ADHD and dysautonimia, if there are sleep aids that help with the insomnia from this (she can use melatonin but it also reduces bp and causes issues), if Wellbutrin interacts with dysautonomia, etc.

We spent many years just "leaving well enough alone" because the Gatorade kept her pain, fuzziness, fatigue mostly under control.  Now we are back with the medical system I'm seeing what I saw before, you can just get dragged from one path to another -- this treatment helps, but has side effects you need to take that for, and then you need another thing to treat the side effects from the new thing, and each time you have to convince the doctors that this is an actual physiological thing.  Getting the original diagnosis was murder -- two years of begging and then the pediatrician finally did a pulse test and was shocked to see she really did have a problem.  I'd really like to go into this new effort informed.

Thanks for anything you can help with!!