I'm A Mess

[lieze]

Woke up screaming 4x last night.

Ate a cookie when I woke up and felt like I had electricity running through me starting on my arms, my head felt like I would have a seizure ( never have ) got a headache and then it ended with heart palps.

Then tried some shrimp about 5 pm one or two bites felt like I was having a histamine reaction took a tiny bit of Benadryl.

That started to work then I felt like I went into a panic attack. Horrible head and chest sensations legs trembled for about an hour. I finally am feeling okay but exhausted and I have no clue as where to even start.

Drugs scare the daylights out of me.

I even questioned if I was having an adverse affect to the Benadryl but I barely took a drop. The tiniest bit on a spoon I could pour but see and taste.

Tiny bit of shrimp tiny bit of Benadryl loads of adrenaline and panic-help!

How do you get help if your afraid of meds?

I didn't go to the hospital my mom came again.

I'd come out of the panic and roll right back into it.

[icesktr189]

Have you tried klonopin?? If not it could help you tons.

Hope you feel better soon I'm in the same mess right now too.

[lieze]

I have never tried it.

The Xanax I have the expiration date was August and I haven't taken any since summer.

[icesktr189]

I couldn't handle Xanax. Klonopin was the only one that worked great.

I would start at. 25 mg

[lieze]

Can I ask what bothered you about the Xanax?

I took a tiny tiny dose and it took all of my symptoms away.

That last couple times I took it I really felt a kick though I mean it felt like my heart stopped or was going to.

The next day I would feel a bit dizzy and I did get withdrawal symptoms between doses.

[icesktr189]

It felt like it was too strong and didn't last long enough.

The klonopin just felt a lot better and lasted all day

However the lexapro took over after two weeks and I was able to completely get off the klonipin

Let me know how it goes if you decide to try it

[radiohfan23]

Hey guys, one thing i've noticed a correlation between processed sugars (non natural) and increased anxiety. Sometimes I wake up craving sweets to the point where I feel overly compelled to get sugar. Those nights when i eat a little chocolate or candy or something I wake up constantly with palpitations and awake to horrible anxiety. I've found eating protein before bed helps me get better sleep and last through the night longer without the extreme morning anxiety (I usually hard boil an egg). And as far as Xanax I do take is sparingly and I also know that taking expired Xanax should be OK (won't be harmful), it just won't be as effective.

Lieze - do you know what type of POTS you have? I'm wondering if it's Hyperadrenergic and if theres a tie between that type and the sugar/adrenaline/anxiety.

[lieze]

I don't have an official diagnosis.

My doctor just suspected POTS when I had what felt like presyncope after showers and eating.

Although she says she has other POTS patients when I described my difficulty eating she didn't think it was POTS related for whatever reason and questioned my diagnosis.

All of this started after I got chicken pox 2 years so I was hoping I was in the post viral category that might improve in time.

I really don't know.

Nurses I worked with who also dealt with anxiety/panic swore to me this was anxiety.

They saw my episodes also claimed their bp's would drop, racing heart-so I don't know what to think.

I don't know if there a lot of people misdiagnosed with panic who have POTS because I read of very similar incidents on a panic forum.

Xanax does bring my heart rate down-and make me functional.

In the past I could have a horrible episode and then get up and go as if nothing happened the rest of the day.

Now I seem more wiped out emotionally drained just because it has gone on for a longer amount of time.

But I sometimes feel that my body is capable of more than I realize and it's my fear that holds me back.

My energy surges do not seem balanced at all.

It seems I'm either revved up to where I feel as if I'll come right out of my skin or wiped out.

Maybe more activity and balanced routine might help I don't know.

I just experienced scary weight loss from not being able to eat so I've been laying low trying to get out of starvation mode.

It was both food reactions I would get and then just feeling horrible more cardiac shortness of breath if I put too much food in my stomach at one time.

The stomach issues really seemed to exacerbate around the holidays and following but I had a lot of stress at that time.

[Guest tearose]

Hugs to you lieze.

I have the hyper type of POTS and need to wear my compression when awake to slow down the constant triggering and cascade of symptoms. I do NO drugs!!!

When I take Benedryl I get wired not tired so I can understand the reverse reaction you experienced. IF I need benedryl I take a child's dose and plan on being awake and compressed.

I too have some food issues but they are more of the gastroparesis type. My food will just churn over and come up or just sit there and ferment...ick! I find that I have had to learn what to eat when more symptomatic and those things are usually soft or soup like and warm and taken over time.

If you do no medication do you at least meditate? Seriously, it helps me. Also, without compression I would be burned out by noon every day!

I hope you feel better soon,

tearose

[radiohfan23]

Lieze - Sounds like you're going through quite a bit and I think a lot of us can empathize with what you're feeling - it’s a desperate lonely existence but there are absolutely things that will help, so hang in there and definitely use these forums for guidance, I have found so many wonderful people that are experts who can drastically improve how you’re feeling. It took me nearly 2 years to arrive at a POTS diagnosis and I still have to get more testing done to determine the exact type.

I also have trouble gaining weight - one of my worst fears is losing weight and wasting away. At my worst I had lost about 35-40 lbs (down from 205 - a healthy weight for me at 6’2”) and felt too sick to eat, it's just unbearable and indescribably torturous. Eventually, I was able to put weight back on by changing my diet. For me sugar and dairy cause lots of problems and make the nausea unbearable. I try to eat high protein and a lot of animal meat and eggs. But definitely try to pay attention to your diet. I actually have dumping syndrome which is a fast emptying of the stomach which is exacerbated by sugary drinks. Do you ever vomit? I always feel some level of nausea even on the best days, but never vomit. If this is what's happening you may have trouble digesting the Ensure, but hopefully that's not the case.

In terms of anxiety everyone I’ve met with POTS has very severe anxiety and yes it is definitely the common misdiagnosis. One of the basic symptoms is the inability to manage any type of stress good or bad. Even good happy events or even loud noise, bright lights, movies, etc. cause problems in most of us and can result in anxiety. There are a lot of good discussions on distinguishing whether certain episodes we're suffering from are anxiety or POTS attacks, I would highly recommend reading up on those. In my opinion I think we’re much too vulnerable to handle most stresses.

In terms of your doctor situation is he just your GP? I had to go through many doctors who either knew of dysautonomia or didn't. I was commonly misdiagnosed with anxiety consistently or they would just say ‘you just need to exercise and drink more fluids’ - what a joke. I found a specialist who treats many of the people on this forum who officially diagnosed me and is working on different treatments. He's pretty good and if you're in the NY City area I'd recommend him. But there are certainly others out there.

Does your pulse change when lying to standing even if you're feeling ok and not as anxious? Even on good days with POTS you'll see the pulse increase to 30BPM+/-. For me my resting pulse is typically low 50s to 70s lying and up 30 bpm standing almost immediately. On bad days resting can be up in the 80s or 90s and will rise over 120 when standing. But my BP doesn't change much. BP drop or increase is common but not necessary to make a diagnosis. Another thing you should do is measure the pulse in the shower; it typically goes up to 150+ with me.

Hang in there and keep in touch. And don't let anyone else who doesn't live in your body tell you how you're feeling or that it’s all in your head. Many "professionals" are ignorant to this and can be very mean and treat you like a hypochondriac when you're suffering a legitimate physiological problem.

Take care and I hope you get some much needed relief very very soon! And I completely agree on the meditation it does offer relief.

[icesktr189]

i definelty know what you mean about the sugars problem. I CRAVE sugar so bad sometimes. I will eat a cookie or cake right upon waking daily. I have checked my levels and the were a bit off, but not enough where a doctor was shocked about them.

The klonopin helped slow my ANS system down. During occasions, if i took it, i could go see a movie without adrenaline surges or go to a restaurant and eat without worrying about my bp constantly. The problem is that anxiety disorders can over lap POTS. I mean shoot, who wouldnt have a bit of anxiety if they felt the way we do everyday of our lives. Its true that with hyper POTS (i have it) that anxiety is much more common problem. For some its just the POTS attacks, but I have Panic disorder on top. When i started worrying about taking new medications to the point i wouldnt take them anymore and not leaving my house, i knew it was something else. Dont get me wrong, even with antidepressants and klonopin i still have POTS, but its much more easy to manage when I am not panicking 24/7.

Have you had your blood sugars tested? That could defeintly lead to some of the symptoms you experience. Protein does wonders for me sometimes. I hope you feel better soon and best of luck :]

[hilbiligrl]

Leize,

Hey girl, i tried to send a pm but i think were they changed the server, it wouldnt let it go through. So sorry you are at a mess here. I honestly dont know what to say or recommend. I know klonopin works so well for me, but im not back on it yet. Perhaps you can try teeny tiny doses, or whatever a doc recommends. I don't seem to have the reactions to food like you do.... i was thinking, is that an mcad thing? but i have no idea.

Just wanted to let u know i was thinking of you lately and wandering how you are.... sounds like you aer stil in a pots hole...... i hope you feel beter soon.

Sorry i couldnt help with any suggestions, but well my illness is like the riddler from batman, its all riddles that can't seem to be answered and constrewed...... oh i hope you start feeling better soon.

much love and hang in there......

tennille

hilbilgrl

[lieze]

Thank you everyone-our Internet has been out for several days and my iPhone is not always cooperating.

I had a better day today-not sure why.

I appreciate all the advice.

[mynagirl]

I know this is really random, but you saying shrimp hit a chord with me. Any chance you're sensitive or allergic to sulfites and that's worsening your POTS? Grapes, wine, shrimp, lemon juice concentrate, dried fruit, coconut... those are pretty big sulfite offenders. A big load of sulfites will always worsen how I feel; it makes the pots that much worse.

Just a thought, I sure hope you feel better Dani!!

Marie