I'M New.. H-Pots, Anxiety Out The Ying Yang, Need Some Help Or Suggestions Please !!

[DadJake]

Hello everyone,

My name is Justin. I'm 38 y.o. and have been sick for about 2 years now. No one knew what I had for a long time. My symptoms first started after a bad car accident 2 years ago. I started with bad anxiety as my first symptom and saw several psychiatrists. Everyone was scratching their heads because drugs like Xanax were not helping me at all, even in the higher doses. I couldn't take the Antidepressants as they made me so sick. I battled to get to a therapeutic level of Lexapro, but even then, it did not help me at all. So I had to go through what I call terrible withdrawal from that drug and refused any type of similar drug since then.

A few months later, I was in the ER a few times because I couldn't get my breath. IV Ativan was given in large doses, but that wouldn't help either. It sedated me, but I would still be laying there trying to catch my breath. Then the Dr. thought I was having an allergic reaction perhaps and I was given IV Benadryl and right away, my breathing came back to normal.

I carried benadryl with me at all times after that and that helped alot with both the anxiety and breathing issues. Then the heart stuff started last year. I finally had a tilt table test. I didn't pass out. I screamed for them to turn off the drip when my heart rate got to 200. I felt like I was gonna die right then and there. So even though my blood pressure stayed ok, they said it was a presumptive positive. They didn't even mention the word Hyperadrenergic. I had to figure that out on my own.

So, here I am now 6 months later suffering daily. My anxiety is going before I even open my eyes in the morning. I have to run for coffee to wake up as my body is going going going and I'm out of breath and very stiff all over. I'm wearing CPAP as they said I have sleep apnea now too. I'm like whats going on. I'm falling apart and so young. I can barely get out and do anything b/c I am so uncomfortable.

My latest symptom is this sensation like I'm rocking on a boat. After lots of googling, it's called "Mal debarquement". I was never on a boat or a plane which is how most people get it. I don't know what to do. I have a son who is 7 years old and I can't do anything with him. I feel sick on top of the above almost 24/7. Even if I can get the anxiety under control, just walking to my mailbox tires me out.

My wife is ready to leave me. She is not being supportive despite having a real diagnosis. I wasn't even hurt that bad in the car accident that precipitated all of this. Just some bumps and small cuts, but my car was totaled. I don't get what is happening to me. I seem to be getting worse and worse. Even with all of the Physical symptoms, my Dr.'s are telling me I'm just anxious. I am, but it has no cause. The anxiety is coming from nowhere and now I seem to be crying all of the time from nowhere as well. It feels real, but at the same time it feels like a symptom. It's like 2 year old crying. I'm beginning to think I have brain damage. I have seen so many Dr.'s. My MRI's are normal.

I could really use some support here and ideas of how to get help...

Thanks so much.......

Justin

[maggie]

Hi Justin,

Sorry to read your story and welcome to a site where people will understand all that you are going through. It's so sad to read that your wife isn't supporting you through this. As you keep coming to this site you will find that many people have gone through this same experience as you with their mate. The first thing I can tell you is that you are not falling apart even though it may seem that way. I had anxiety as well when I was first dx, that was my first symptom. Also like you, I have times when all I do is cry. I talked to my neuro about this and it's actually a symptom that can come when your heart rate is racing. It's nothing you can stop, it's your body reacting to what all is taking place. I hope in time you will be able to improve like some of us here and become more active again. It takes time to adjust to this all and then take small steps towards improving. Keep on this site read and learn and hopefully we will see other posts from you with better news then today.

Maggie

[janiedelite]

You said your tilt test was presumed positive, but what was it positive for? What were your BP's and pulse rates during the test? Have you had your catecholamines checked (while lying and standing)?

I'm so sorry that you find yourself in this situation. I know what it's like to feel helpless. With your positive tilt test, it sounds like you need to get to a doc who really knows autonomic disorders. I had to travel from Oregon to Minnesota in order to be seen at Mayo because no one in my area could help me.

Keep asking questions and fighting for answers. There are a ton of knowledgeable and helpful folks here.

[Tia Koul]

Justin, try to hang in there as best as you can. This is the hardest part and time when you are still getting diagnosed. What else do you take? Just the benadryl??? You need to get to an autonomic specialist and get on some meds to control your heartrate! That may help relieve some anxiety, not all of it, but it could just be enough. I would really try to get as much info, from this site, and others, print out the important facts, and pass it along to your family. It is so important to have support. Although, you may never fully get it, don't give up. And I'll be happy to email her (even though my knowledge is limited) but to explain the severity of this condition. The less stress the better, so make a plan to find a new doc, and try your best to stay calm until then. If you need anything, just ask. Also, I've been thinking about this lately, a long time ago, before I was diagnosed and the docs were trying to give me various anti depression meds, one had a positive effect on me. Neurontin. I am going to ask about this again. I remember it gave me a sense of balance I hadn't felt in years. Maybe you can ask about it too? Just a thought. I may try it again... good luck... Talk later Also, you can have your wife check out the fb page for hyperpots. She can do a little reading there as well.

[Ashelton80]

HI Justin,

This can all be so overwhelming for not only us, but for the people around us. My marriage and friendships have suffered greatly as well. First of all I would encourage you to first take a deep breath and try to concentrate on one thing at a time. Try to figure out what your worst symptom is. I also had trouble with anxiety/panic attacks, but now know they were just adrenaline surges to try and constrict to keep my bp up when it was dropping due to low blood volume. This may or may not be the case for you. So I guess that makes me wonder why you are still drinking coffee?? That was one of the first things I had to give up because of the horrible wired anxious feeling I had after I drank it. My body gets really revved up and it can take a lot of TLC to get it to calm back down. The point is that it WILL calm down. Anti depressants were horrible for me as well. Try to focus on eating well (not a bunch of junk) drinking, resting and sleep. When I get overwhelmed I just try to find a starting point or something that I can do today! One of my starting points is lots and lots and lots of fluids and salt. Lots of V8 juice and chicken broth and around 3 liters of water. This takes a few days to build up, but it will usually calm things down for me fairly quickly. Then I will slip on my compressions and that will help a tiny bit more. Then I try to figure out what vitamins/minerals I may be deficient in and I add those in. I haven't been happy with my current doctor so I found a new one. Tomorrow I see him and maybe try a new med or maybe not. I have some other things in the works as well. All this to say is that you have to keep the main thing the main thing. I know when I get so out of sorts I lose focus and tend to do nothing. And that is only hurting me! It's all just a big puzzle that I believe has to be put back in layers. This is such a difficult condition to deal with every minute of every day. It is often traveled through alone and with very little understanding or support even from the ones who are the closest to us. I have and still am experiencing all of that. Maybe encourage your wife to read some material online about it. I know that helped tremendously with some of my family that wasn't supportive and sensitive at first, but now are just having the knowledge of how difficult this can all be. Hoping you find some encouragement and comfort from this forum.

Ashley

[DadJake]

Thank you all so far for the generous replies and warm welcome.

My worst symptom is the Anxiety by far. My body just won't relax. I go for the coffee in the a.m., because my Anxiety is raging before I even open my eyes, but my head is not in the game. I have to wake myself up somehow. It take me almost an hour to just calm down a bit. The Anxiety goes all day and I guess I get worn out from it, so I do a second cup of coffee later in the day. For some reason, it actually calms me down a bit, almost like I have ADHD, I don't get it.

On top of that, I just have a general sense of Malaise all waking hours. The off balance feeling in my head make me nauseated beyond belief. I feel like I just got off some crazy ride. But it's not a spinning vertigo, it's more like I'm swaying all over the place.

Everything is off in my body including body temperature. I sweat when it's 70 degrees outside just trying to take a short walk.

I would think I don't need compression stockings as my blood pressure is ok, it's just my heart rate that goes way up when I stand. Either way, I'm symptomatic even laying down. I don't know how I would get to the Mayo clinic. From what I'm reading, it looks like people that have this bad are stuck with no answers.

Dr. put me on Coreg 25mg 2 x per day. Even with that in me, my resting heart rate is 90's and standing up, it still goes into the 120's. And I still feel the adrenaline shooting through my chest.

This is crazy !!

[Tia Koul]

HI... so where are you? Have you looked at the resources here and at ndrf.org for a list of autonomic md's? There are others out there, not just at Mayo, who can help you. Btw, I mentioned Neurontin earlier, which is NOT an anti-depressant. Even though the way I worded it made it sound that way. Anyhow, I am sorry for the extreme anxiety. I don't experience it as severely as you do. So, really try to call around even locally for md's who treat autonomic dysfunction. You may just find one if you start calling. Or get to the one closest to you using the pages listed with auto docs. Maybe a good electrophysiologist-cardiologist could help you. Really, ask around and make calls. You can also post a new thread with your town and see if anyone else lives near you and has a doc. Anyhow, I wish I could offer some advice. You need help, so keep plugging!!! Good luck!!

[janiedelite]

Here's a link to the autonomic specialists in each state: http://dinet.org/physicians.htm

I'm also taking coreg, but just 6.25mg twice a day. I tried to take more but was much more fatigued. My BP has never dropped with POTS, in fact it even goes up. But I still have problems with pooling which is why my heartrate speeds up (in an effort to increase cardiac output) so I wear compression and take in a lot of salt. Still, you really need to get some help figuring out what's underlying your issues with tachycardia and anxiety. You wouldn't need to go to a large autonomic center like Mayo or Vanderbilt, especially since you've already had a tilt test done. Just an office visit with an autonomic expert might suffice.

It's funny that Tia mentioned the gabapentin/neurontin as helping her anxiety because it had that effect for me as well (although I was taking it for my small fiber neuropathy pain).

[Tia Koul]

Here's a link to the autonomic specialists in each state: http://dinet.org/physicians.htm

I'm also taking coreg, but just 6.25mg twice a day. I tried to take more but was much more fatigued. My BP has never dropped with POTS, in fact it even goes up. But I still have problems with pooling which is why my heartrate speeds up (in an effort to increase cardiac output) so I wear compression and take in a lot of salt. Still, you really need to get some help figuring out what's underlying your issues with tachycardia and anxiety. You wouldn't need to go to a large autonomic center like Mayo or Vanderbilt, especially since you've already had a tilt test done. Just an office visit with an autonomic expert might suffice.

It's funny that Tia mentioned the gabapentin/neurontin as helping her anxiety because it had that effect for me as well (although I was taking it for my small fiber neuropathy pain).

Interesting! Yea, I keep forgetting about it since it was so long ago, but I do recall it did have an effect. Whether it will again is another story. I didn't know it was prescribed for small fiber neuro pain, kills 2 birds with one stone? Nice! I will def ask about it!!! Legs are bad at night. But thanks for posting that link!! Good call! Here's the other one, I think it has a few diff. ones as well. http://www.ndrf.org/physicia.htm

[issie]

You might try a different antihistimine. I figured out that the Benadryl made me more anxious and my tremors worse. I would wake up like you speak of with that type of anxiety. I switched to Claritin, it seems much calmer. I tried Zyrtec and it was even worse than the Benadryl. I too have the "I can't catch my breath". I've found that a quick puff on Albuterol helps that. I've had all types of lung and breathing test and they say I'm fine in that area - but since it helps- they give it to me. I also use a CPAP and have recently discovered that I need oxygen with it at night. That seems to be making a huge difference. For the last 3 days, I woke up feeling UM halfway "normal". Anyway a song was in my heart. I've only done this for 3 nights now and so far so good. With the allergy type symptoms there could be a Mast Cell Activation disorder going on. Also, I have found that the coffee is calming to me too. It has some dopamine properties and works on that brain chemical. Some people find that Wellbutrin is more beneficial, especially if they don't do well with the seratonin type meds - you may need more dopamine. If you up the seratonin and it's already high then you further imbalance your brain chemicals. I get the "cry-ez" too. I think it is part of the imbalance that causes it. I couldn't use any of the seratonin type meds and the wellbutrin made my tremors worse. I have found tramadol and bentyl the combination to be beneficial for pain and a calming effect. But, I don't use it every day - just when I'm in alot of pain and need to really sleep.

As others have stated, you are about to learn allot about your body and how it works. You will start to put the pieces of puzzle together. Knowledge is power and it also takes away the fear. Learn as much as you can. Go back and read as much of this site as you can and it will start to make more sense to you. Look at life as a journey and an adventure - sometimes there are bumps along the way - but you're not on it alone. Hang in there - life awaits. You will find answers and hopefully things will get better for you shortly.

Issie

[crowebirds]

Justin -

My daughter and a niece were born with this condition. I can give you the persective as a family member. This condition is very difficult for the person that is dealing with it directly, but it is even harder for the family member. Most especially when the condition first starts, family members can't feel the pain, can't sense the surges of anxiety, can't understand the sense of falling apart.

I would like to encourage you to communicate with your wife as much as possible about your condition. Try to keep communication during the times that you are feeling your best. Your wife has suddenly been thrust into a position of being a single mother, being caregiver, and being stressed about the job situation. Feeling like a single mother even though you are still married is manageable, but added with the other stressors makes it more difficult. Remember that this condition is not only yours, but hers too. You both have been consumed by a new reality that takes a lot of adjustments. I would encourage her in the same way.

Encourage her to be involved in the research. Allow her time to process all that is occuring. Help her to find support from friends to help take care of your son. Most of all, take care of yourself the best you can.

I will be praying for you and your wife and son. May you all find strength, compassion for each other, and healing. May God bless you all through this journey that you all are taking. May you find peace and joy along the way.

Many blessings,

Robin

[lieze]

I would encourage you to gently try to increase your endurance.

The resting heart rate of 90 and 120 when you get up to do things is not horrible. It can improve if you keep trying to get up walk around and do.

The walk to the mailbox used to have me seeing stars too but the more you do it, it can improve just be gentle, don't try to push too far. Baby steps.

I notice that if I'm having a bad day where my heart wants to race when I stand I just keep trying. I go sit and wait for it to come down and it may take 3 more times but eventually I get past that and am able to get up and do and not have that happen.

If this doesn't seem like it fits you just ignore it's only what I notice for myself.

Also the breathing. At first just talking on the phone or reading a book to my son left me breathless. Just keep trying. Practice with some breathing techniques slowing down your breathing or belly breathing.

One of my most uncomfortable was it would feel like my lungs would tighten up on me and it would move up and up until it released. I get the same feeling in my throat and in my jaw.

By belly breathing it takes my focus away from that tight feeling and I don't even worry if I can take a full breath or not at the time I just know I feel okay and that is all that matters.

I think you can learn to work with your body and feel more comfortable and that it may take some of the frustration and anxiousness away for you.

Good luck and hang in there.

[ramakentesh]

Not sure if this will help but mestonin and herbal acetylcholinesterase inhibitors completely shut down my over stim, sympathetic feelings and wired stuff.

[potsyturvy]

I was diagnosed with disembarkation disorder (like you, I hadn't been travelling), and I also have several other types of vertigo, but like you said, the disembarkation dizziness is different, to me it felt like I was rocking on a boat or something. Florinef helped me the most with that. I'm not sure if it was truly disembarkation disorder since the Florinef made it go away, but maybe your POTS symptoms are causing the dizziness? Have you had your Vitamin D checked? I had horrible panic attacks, nonstop, all day long until my doctor prescribed mega doses of Vitamin D for my deficiency. Or maybe you could talk to your doctor about trying an SSRI or anti-anxiety medicine. They can be really helpful in fighting panic attacks. Hope you can find some things that help!!!

[ramakentesh]

Anxiety is actually also a symptom of POTS hence the reason it may not respond to xanax. Your looking at sympathetically mediated anxiety or compensatory release of adrenaline that just activates beta 1 and 2 receptors, causes feelings of flight or fight, but actually also vasodilates potentially making you worse.

[firewatcher]

When I was at my worst, and before my diagnosis, Benadryl was the only thing that ever helped. I took the liquid at the max dose, every four hours. It actually has incredibly potent action on the nervous system; its antihistamine effects are simply a byproduct. The other closest relative is mirtazipine/remeron.

I also had disembarkation disorder without travel. Klonopin and Propranolol helped the greatest at first, now I would say dDAVP.

I truly think that this will calm down with proper treatment.

I also would suggest that your wife become either a member or lurker on this site. There is as much stress on her as there is on you, and she needs the support that you can't give her now. You need to support yourself and not feel guilty about it.

Good luck!

[issie]

For some people, Benadryl will CAUSE us to have that dizzy, rocking feeling with more tremors. I only take it if I'm having a really bad allergy attack (along with Claritinn and Benadryl) like I did last night. When I woke up this morning and just opened my eyes - I had that anxiety, panic, heart racing - tacky thing going on. It happens to me every time I take Benadryl. I recently found out that Benadryl blocks acteylcholine and increases dopamine levels. This could be the cause of some of the issues that you're having.

I noticed that this is an old post - so, Justin - if you're still with us - Let us know how you're doing.

Issie