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jpjd59

Anyone Else With Severe Anxiety Issues?

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My 23 year old daughter has POTS (sick since July 2011 and diagnosed in November 2011).

Dr. initially put her on Fludrocortisone with caused MAJOR depression. Dr. said that is a rare side effect and that she should not take any other drug which has depression as a potential side effect..

Ever since then she has had terrible anxiety/panic. She doesn't want to be alone and she has mood swings. .

Anyone else experience this? She is extremely sensitive to meds and at the beginning they tried SSRIs and SNRIs but they made her worse. She is taking Vitamin D, B12 and magnesium. None of this seems to help.

Any ideas of what would help? Any natural remedies/supplements?

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I suffer with this also. I hate leaving the house as it results in an attack every time. I take passion flower. It helps calm down. It works fairly well for mild attacks. I also give it to my 6 year old for adhd. Neither of us has had any side effects.

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Beta blockers completely took care of this for me. My tachycardia was physiologically causing the anxiety. I'm also on Clonazepam for sleep, which calms my brain from waking me up. I also have sleep apnea...

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Kimbellgirl:

Unfortunately beta blockers make her POTS symptoms worse. I believe that the anxiety/panic/depression is caused by her norepinephrine levels being too high (in the 200s when laying down - going up to the 800s when standing) but I'm just guessing this is the cause.

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Fludrocorisone made me feel utterly depressed within 24 hours and had this effect when i got the a new persciption but it passed. It was the flodro that actually stopped all the anxiety symptoms. Did she try it for long - the depression passed for me. I always carry valium and if the adrenaline gets too high i take 1/2 tablet. But it would be no good if you took it all the time.

My heart goes out to your daughter - it was awful to feel like this all the time.

Hope this helps.

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Emma246:

Yes, she was on Fludrocortisone for 4 months (and actually didn't notice depression at first). Seemed to occur after taking it for months and get continually worse - that is why the Dr. took her off of it.

I'm glad that it works for you! Everyone reacts so different to things - I guess it is just trial and error.

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My daughter is really struggling with anxiety too. She worries all of the time about feeling worse physically if she has any plans (even at home). She started beta blockers last week and it's helped her tachycardia but not the anxiety. We've tried relaxation techniques, cognitive coping techniques, distraction...nothng works. We are at our wits end.

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kjmom:

My daughter said she feels the anxiety/panic/depression in waves (she even describes feeling like her brain is on fire). We have tried meds, herbs, breathing techniques - nothing has worked. We are out of ideas.

How long has your daughter had POTS? Do you know what kind of POTS she has (for example, my daughter has HyperPOTS from a virus).

Pam

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I've recently added clonidine and it has a calming effect to - but, it can lower blood pressure. What it has done for me is level out my drastic swings - I have both high and low blood pressures. It does however make me more tired and a little more dizzy. Since, I recently lowered the amount down again - doing better with that and time seems to be leveling the side effects out some too. One thing, I've noticed though is more edema - cause it vasodilates your veins. I can't do betas because they make the MCAS issues worse and I felt absolutely horrible on them. I've also tried an ARB and that wasn't good either. The two things that my neuro tries for high NE levels is clonidine and guifacine. He is trying guifacine first and then if that doesn't work clonidine - both lower NE levels.

Issie

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Pam, My daughter started her symptoms suddenly in Dec after a virus. However, after she was diagnosed with POTS, I realized that she had many EDS hyper mobility type symptoms so I got her evaluated and sure enough, she has that too. The anxiety has dramatically increased over the past several weeks though. Her GI symptoms have been bad from the beginning but get worse with her anxiety (although I don't know which comes first).

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kjmom:

Thanks for your response! Horrible thing at 10 years old to have to go through (well, horrible at any age really) I hope she starts to feel better soon

Pam

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I have to say after my tilt table test told me that all the symptoms of feeling poorly were really pre-fainting symptoms, I started having a high degree of anxiety. I started thinking a lot of "what if" questions. Like "what if I'm with my two kids in the store by myself and I faint". They are 2 and 4 yrs old. Or what if while driving. I would get the most anxious about being in places with limited escape, like the store. So, I noticed I became very avoidant. With the added anxiety of these places, I think I started conditioning myself to be nervous of those places and made my symptoms even worse when i went there It's that downward spiral. It really became like a panic disorder, even though I never had a classic panic attack. Also, I have never fainted except on the tilt table. The last few months I've been pushing myself hard to go to those places that scare me and to feel good or be at peace with not feeling well. Does that make sense? So, I may be dizzy but I'm trying to train myself that I'm ok, or at least that I'm not going to faint, because I never do. Instead of getting that hamburger at McDonald's in my car, I'm going in to eat. I've noticed how avoidant I have become. I know I will get better, but until then I'm trying to teach myself to be more at ease with not being at ease or not feeling well (like being dizzy).

I know it's not all in our heads, but for me when I found out more of what was "wrong" with me, it messed me up mentally a little. I couldn't and can't stop thinking about it. And others can worsen the anxiety at times by asking repeatedly "are you doing ok", even though it is out of love.

The bests times for me is when I'm not thinking about it. Maybe that's a good idea. Make a list of when you are not thinking about it and make sure to do those things often, as a way to cope and give yourself a break.

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There is a difference in this type of flight or fight - not the same and not under your logical or brain control.

Issie

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Has your daughter had her Catecholamine levels checked during her tilt table test? I'm doing my TTT over this week with the levels taken because if i am hyperPOTS I do want to stay away from NE stimulants as best I can..

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RichGotPots:

She had levels checked at Mayo Clinic in Arizona. They said her NE levels were too high (when standing). They went from somewhere in the 200s when laying down to over 800 when standing. I guess that is why the Stanford doctor thinks she is HyperPOTS.

Good luck with your TTT this week!

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Alaska, that does make sense when it is caused by a fear of something or a what "if" scenario. But, this type of anxiety that comes with high NE levels is not like that sort of anxiety. It comes along with the increase of NE that who knows what will cause it. It's not something you can power yourself out of. If a fear of something is the cause of the anxiety - then powering through it may very well condition you to not having those types of feelings. (Like me and public speaking - it scares me a whole lot - but, I make myself do it and with each time, it gets easier and I see I'm not going to die and I manage to get through it. Granted a lot of the time, I have to act my way through it and disconnect my mind and brain. But, whatever it takes to do what you need to do.)

There is a difference in this type of flight or fight - not the same and not under your logical or brain control.

Issie

I hear your point and for all I know that's what I'm dealing with also... as I've never had this kind of anxiety. I will get nervous at times for no reason I can think, at moments that should cause no anxiety.

But, let's say you have one of those uncontrollable moments of escalating anxiety or panic at a specific place like McDonalds for example. Those high anxiety moments are set into the brain. When you go to McDonalds again you are likely to have a vivid memory of what happened before and you will get that fight or flight response... even if at that moment everything biologically is functioning properly. So, no matter the cause of the anxiety, it is very important to recognize the power of past experiences. Like two months ago I thought I was going to faint when I got my haircut. Last week I was feeling better and got my haircut and I really had to do a lot of cognitive therapy and say in my mind "I'm ok" and "I'm fine." I did fairly well, still some issues.... but I guess that's what I'm trying to say. I am trying to learn how to deal with not being 100%. It's a new thing to get used to. At the store I felt the vertigo feeling, but tried to say in my mind "I'm just a little off, but I'm fine." If I start to think "I'm not fine", then I have learned I make my situation even worse than it already it and then I start to have thoughts like "I better get out of her" or "I can't do it" and my heart starts pounding harder and all of a sudden I really do feel like passing out. So, I feel I have an uncontrolled biological action made worse by my mental response to that biological state. I'm trying to be more at peace with my biological state if possible. Maybe that's the best way of saying it.

I should say also that I am a big believer that it's not just in our minds. I actually feel a lot of anger when Docs say that. But, I have to be open to the idea that our minds still have a lot of control. I mean in this situation I'm in where it seems I have no control and the Doctors don't know what to do, I been looking for anything that empowers me to have some control.

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Alaska, Do you know if your NE levels are too high with standing? That would at least let you know if it's physiological or if it's situational.

I hear you on telling yourself that "I'm okay". I think we all do it. It's nice to see a guy expressing himself and acknowledging feelings and emotion. I think that is the first step in getting a handle on things. I see many guys with that "macho - he-man attitude" and it, in a way, might would hinder healing because your not acknowledging what truly could be an issue here. I appreciate that about you and your comments.

Keep on telling yourself that you're okay - cause you are. This probably won't kill us - but, it will make us stronger. If we can try to see the positive and not look at the negative and try to see something good that can come from it - then, I truly believe, this too will make us stronger and we will become better people for it. Although, I wish there were another way to learn these lessons. Unfortunately, this is what it is and we have to make the best of it.

I have a friend that came up with an analogy that I just love. This is it: "Some people see the glass as half full, half empty. But, in reality if the glass is half full of something - visable - it is in reality completely full. It may be half full of a liquid but the other half is full of air and is actually over-flowing with air. So, it is in reality completely full and over-flowing." -- by A. James. Don't you just love it. Makes you take a look at life - doesn't it?

Issie

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Issie:

I'm trying so hard to understand all of the chemistry surrounding this mystery called POTS. So, because my daughter's NE levels are too high when standing, should I be looking for a drug/supplement that blocks NE or one that stimulates NE release (like Butcher's Broom)?

Sorry to be so dense but this is all new to me (I knew I should have taken a chemistry class in high school!!)

Pam

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Issie:

I'm trying so hard to understand all of the chemistry surrounding this mystery called POTS. So, because my daughter's NE levels are too high when standing, should I be looking for a drug/supplement that blocks NE or one that stimulates NE release (like Butcher's Broom)?

Sorry to be so dense but this is all new to me (I knew I should have taken a chemistry class in high school!!)

Pam

It is very complicated I'm not sure that having taken chemistry would have helped us here. :) Thing is that depends on what the problem with NE is with your daughter. Is it a compensation to increase blood volume and up her blood pressure. Or is it a problem with the transporter not up-taking properly and therefore there being too much NE in the system. (Doing research on Tramadol - which is what seems to help me - some studies say it increases NE levels by being a re-uptake med. other studies say that it inhibits re-uptake. So, not sure what it is doing on the NE levels for me. Since my levels are high. (I was not on the med. when I got tested - so I know my results were not caused by the med - if it is in fact a re-uptake NE med.) But, it also works on re-uptake of serotonin and dopamine - and has properties that affects NMDA function. It also works on opiate receptors and seeing as my body seems to be in a inflammatory state and I have lots of pain from that and EDS - this is another help to me. So there's so many reasons - why it might help me. Just not sure what or why. All, I know is it does. BUT - THIS IS A BIG BUT - it can lower your blood pressure and that is what I personally need.)

If she is vasodilated and needs to constrict the butchers broom - may work well for that. It basically is midodrine light. (It was horrible for me. Took me a while to figure that out. But, vasoconstricting is not what I need - I need to vasodilate.) The things, I take now vasodilate me - but, because of this causes edema and more fluid pooling. But, I do have EDS veins and that can complicate and compound the problem. Doc. has me wearing compression socks to try to keep the edema down. I found that the clonidine caused more edema - but, it does lower the NE levels.

Also, I figured out that I need more NO and not less. The things I do increase NO too. More people with POTS have high NO levels rather than low. So, this is another thing to figure out. I found out the hard way with an ER visit that was related to MCAS issues and saline IV's and high antihistamines and nitroglycerin is what pulled me out of it. Nitroglycerin ups your NO levels. Right now, as of yesterday, I added alpha lipoic acid and that also increases NO levels and yesterday and today - I've felt really pretty good - more energy.

There's really no certain way of determining what will work best - without a whole lot of experimenting. I've gone the gammit of what's available. I tried everything - until I figured out what was working best for me. Some of the things had me crying uncontrollably and having panic attacks and paranoia. Other things, were just not good and caused heart pains and either too slow heart rates or palpitations. I still don't have it all figured out and am always researching and looking for alternative explanations and possibilities. Since, I have only one more med group that I haven't tried - I'm to the end of what is KNOWN meds to do for POTS and you see what I've settled on as the least offensive solutions ---*for me*. I always try to qualify when I tell someone what "I'M" doing because I'm not the normal POTS person at all and fit into one of the harder sub-groups of POTS. According to Dr. Grubb the type I am is 1% of all known types of POTS. So, that makes me rare, "special" or whatever way you want to look at it. :) But, I'm trying to learn about all the groups, and had to, in order to figure myself out.

I wish I could give you more answers - but, with the HyperPOTS label and there not being that much research on this group - nor, it being understood - it's just a whole lot of trial and error. Like I said earlier - more error than anything. You just have to try to educate yourself on what is known. And be ready for a lot of experiments. She will probably be super sensitive to anything and it won't take long to figure out what is and what is not working.

I found another thread a while back, I'll bump it up. Rama, shows that Tramadol should actually make things worse for me with high NE levels (if it is a reuptake med.) but also has some other good info in regard to HyperPOTS.

Issie

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I also have high NE when standing. Ive had terrible anxiety issues. Got so bad i could eat or sleep. Things that work for me are

1) valium

2) beta blockers ( but a very small dose and frequently ie in the morning and at 2 pm (not at night). 5-10mg propanalol worked well.

3) very mild recumbent exercise every day. I started with 2 mins on the recumbnt bike and built up. Recumbent yoga.

4) giving my body a break by staying recumbent

5) low dose naltrexone

Re valium, i got used to it ver fast so i only take it once a week. The thing ive noticed about it is that even after the valium should have been excreted, i remain calmer for a few days. Its lmost as though anxiety stimulates more anxiety. If you break the cycle then you have a few days of relief. Ive had no problems with being addicted to valium. I dont crave it at all. Its just that it has less and less effect each time i take it.

Re propanalol. Propanalol decreases blood vol and also is excreted rapidly. So if you take too much you could be triggering more epinephrine through via the endocrine system triggering the sympathetic nervous system.

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Jp, I suffered tremendously with this. Sometimes, I still do. If it is really interfering with her life, you could always try a benzo or other sedative. The only catch is that with me, the benzo created drug seeking symptoms similar to pots. It's hard to understand from a healthy person's perspective, but it really feels like you are going to die right there. The best way I can describe the feeling is like the rush you get when cliff jumping, or are in a car accident, over and over again all day every day. One of the things thst helped me was knowing that I am not going to die. Still though, I get anxiety when I am alone.

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How's her diet ? Excitotoxins, like msg, dyes, caffeine, etc can cause this. Gluten, hfcs and certain supplements

will do this to me.

A tiny bit of caffeine would keep my adrenals or heart racing for at least 24 hours.

I didn't know this feeling wasn't normal until it was gone. I'd had this my whole life ..

The amount of drugs needed to stop this would've left me unconscious.

Blaylock has good info on this. As does dr vikki peterson. Tc ..d

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Dizzysillyak:

She has eliminated all caffeine from her diet because it made symptoms worse.

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I'm not sure if that means she's reacting to other excitotoxins or not. Most people

do on some level. I react to caffeine with a jolt but thought it was normal. duh ..

Blaylock explains this. If it were me, I'd try an excitotoxin free diet

to check. Of the top of my head, that means the wahls diet. Dr terry wahls has videos on the web.

Gluten free casein free helps many but the wahls diet provides nutrients and eliminates most common

food intolerances.

Tc .. D

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Lemons mentioned benzo's, as I did earlier in this thread. Klonopin (clonazepam) is a benzodiazepine and it is what I take, too, actually only at night to turn my brain activity off, so I can sleep, but many take this through the day for anxiety. It's made all the difference for me. I'm a lot more calm. There are several types of medications to choose from...talk with her doctor. Some people are afraid of addiction, but a small dose (0.5mg),could be all it takes. My ANS doctor and Sleep apnea doctor told me I could be on Clonazepam for the rest of my life with such a small dose. I have no side effects from it. I wake up rested now, and I'm a lot more calm a person. I was always very high strung before all of this, and of course the tachycardia, and insomnia weren't helping either!! I've been on it now since last August, and it hasn't lessened it's effectiveness, either. It's great for me. Maybe it would help her, as well.

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