Help With "anxiety"

[rspry]

Hey everyone I'm a new member here and wanted to get some advice, I have been diagnosed with POTS since 2005. I was 19 and living on my own when I first started to see symptoms; Very scary being by yourself and not knowing what was going on. I had to quit working and leave school because started having severe symptoms pretty quickly. They seemed to come out of nowhere. I had a very difficult family life, so after I became ill I stayed with various friends that were willing to help. It’s one thing to be sick with a chronic illness that no one seems to know about, it’s another to not have the comfort of your own home to be sick in. Luck for me, I have really great friends and friendships I still maintain from when I was younger. I had many hospital visits and MANY times I was told that I was having Panic Attacks and was prescribed Zanax, Zoloft and Paxil (not all together) given sedatives and big doses of Benadryl to solve my problems. Once a doctor asked if I wasn't eating on purpose, as in did I have an eating disorder… That day took the wind out of my sails completely.

It took doctors 2 years between a dozen or so different specialists to figure out what was going on. A diagnosis only came because I happened upon POTS while researching myself and found a doctor that was familiar with it. I tried many medications before I found some that seemed to work. I am currently on Propranolol 20mg 3 times a day and Midodrine 5mg 3 times a day. I don’t seem to have many side effects from these medications, however with the Midodrine you need to wait 30 minutes before you can nap after taking it so your blood pressure doesn’t spike. I have been putting along for several years now with just those medications to manage my ability to be upright. Don’t get me wrong I appreciate not fainting anymore, but there are other aspects to this illness that my doctors don’t seem to be addressing.

I have the hardest time with the “anxiety”. It completely debilitates me. I have read forums and hear people talking about it but it doesn't seem to affect people to the extent that it affects me. I was writing to hopefully get some feedback. Maybe it’s just not something you all have talked about in depth, maybe it gets swept under the rug as another annoying symptom. I feel as though that part of it is forming a life of its own. I don’t like to be alone (because of episodes of fainting and such that have happened in the past) I don’t like to drive alone (because of other bad experiences), I get anxious now about taking new medications because if doctors don’t know really what’s going on in my body how can I trust them to know what it will do to me? There are so many other things and at times I just want to lock myself away somewhere.

I have recently begun to battle my doctor about the Hyperadregenic aspect of POTS as well as MCA (mast cell activation) because I feel completely out of control of this anxiety and he seems to think i am just unwilling to come to grips with having a panic disorder in addition to POTS. I have panic attacks watching TV and going to the grocery store and at other times those things don’t bother me at all. It’s hard because your mind marks down the events that resulted in you panicking and will do whatever it can to make you avoid it from happening again. But if there is no rhyme or reason to it other than an overproduction and underutilization of the ‘Flight or fight” chemicals you end up confused and subconsciously scared of things that really didn’t trigger anything. My doctor said he was looking into blood work to diagnose Hyper POTS and some testing to check for MCA but he sure is taking is sweet time with all of it. Anyone have issues with this at all? Any specific medications help. Iv'e looked into Clonadine HCl but I'm really not sure about any of this. The anti-anxiety and antidepressant medications I have taken in the past have made my symptoms worse. I could really use some support, any words of advice or even similar experiences would mean the world to me right now.

Thanks

~Rachel

Edited September 26, 2012 by corina

[Mytwogirlsrox]

Hi,

I can totally relate to the anxiety. It's my most disabling symptom. My attacks come out of no where, not positional in nature at all. I have come to accept this as a part of pots. I've never had anxiety prior to pots, so it must be pots. I

Do however think that things the relieve panic help me. Dr stressing my life is a major one. I try to not get bawled up anymore. The more stressed I get, the more anxious I get then it seems like the attacks happen more frequently. Have you started journaling? That helped me identify situations that trigger.. I don't avoid those situations now, but I will do breathing techniques to manage during a trigger situation. Plus a lot of positive thinking! This is pass.. YOu have had enough I'm sure to know that you will not die today from these attacks. Mine usually last a few

Minutes 10 at the most, so finding somewhere to sit breathe and think positively helps a ton. I had to start with celexa an SSRI though. I don't know I you have tried this particular one, but I was per scribed it for anxiety/ depression and it actually really helped my pots. My blood

Pressure stabilized, and my tachycardia dropped about 15-20 Bpm plus the anxiety stopped. I had to take it for approx 4 months to see results, but it got me into a better place. I built up my confidence during that time. I have now been off of it for 2 months. I have little attacks maybe twice a month, but I can cope a lot more now. it might be worth trying? Exercise now really helps calm my attacks.

Anyways, I hope you find something that helps. Like I said, I can relate to being miserable

From anxiety

[rspry]

I do use breathing techniques and try to use other means to help me relax. I have been managing with just that for years but lately it seems more and more out of my control. When I seem to overcome things that I thought of as triggers, a new strange one emerges and I am terrified of something ridiculous. I have always found comfort in knowing I could go to the hospital if I got sick or dehydrated or just plain didnt know what was going on. Lately though the thought of it freaks me out. I feel like this is some cruel joke. Things I found comfort in suddenly upset me.

[Mytwogirlsrox]

I know!

Im pretty sure I have health anxiety now.. When I take my babies to their dr appts I have to fight tooth and nail to not pass out lol.. I have vasovagal syncope too .. Real

Exciting!

Honestly though, I couldnt have crawled out of this hole without Xanax and celexa. I was literally curled up in bed, not sleeping or eating crying thinking I was dying .that was in march of 2012, now I'm applying for nursing school, doing spin class and Zumba. Living my life! Oh I also went to a counsellor

[Jan]

I was house bound due to anxiety. It feeds on it's self and just gets worse if you can't get it under control. When I worried that I would get anxiety, it triggered anxiety.

Anti-depressants, especially SSRI's made it worse for me. I spend hours meditating and "relaxing" with no luck.

I started to take Lorazapam "as needed" and went to counseling. The counselor suggested taking it in the AM and PM and that changed my life. It stopped the cycle. When I took it "as needed" I was still experiencing anxiety, but then controlling it by taking the med. By taking the meds 2 X a day, it warded it off. And if I am feeling ill, and start to get a racing heart, I don't get the panic at all anymore

There are people who are against long term use of the benzo group of drugs because they can be addictive for some people. I have not increased my dose in 10 years and it still helps. It is a miracle drug for me.

I also adopted the Mantra 'This won't kill me" which I repeat to myself when ever I an feeling particularly ill and feeling dizzy.

[targs66]

I've also got horrible anxiety. I used to be the most capable person on earth, and now I feel like a frightened little old person. I don't have specific triggers really -- it's just like I'm generally anxious so whatever is happening at that moment makes me nervous. (For example, if someone says "Let's go to so and so's house" my mind thinks "But driving is very dangerous" or "I don't think so and so really likes me" or something equally ridiculous!!) I am trying to find a medication that takes the edge off - this is just miserable.

[Angela]

Im like Jan, I take Clozenapam (Klonopin) and is a lifesaver. I have terrible adrenal surges, I can't even drive anymore without having to pull over from panic. I have hyperpots. Other things that help with anxiety are magnesium (has a calming effect) and Issie who often posts takes herbal supplement motherswort, she swears by it and I googled it and it makes sense, I am going to try. But I swear by Clozenapam, it stops the tremors within 15 minutes and totally calms me down.

[rspry]

I really appreciate all the feedback... Makes me feel less like a crazy person. I'm hoping that if I find the right medication it will make this cycle stop. When you have spent so much time over thinking and worrying about things its almost hard to imagine a little magic pill that can turn it off. How soon after starting to take the medications did you feel better? Also when I was looking into the medications I was looking into what they actually did.. Like Clonadine HCl was used to basically open up the a1 channels in the synaptic cleft to allow absorption of the norepinephrine, so it doesn't spill over into the blood stream causing that paranoid creepy feeling. I believe Benzo's affect the GABA receptor which open up all of the channels which effectively does the same thing. My sister is in med school and she came over and drew me diagrams of the neurotransmitters and the re-uptake process etc. From what we found there is one of 3 problems or a combination in HyperPOTS. Too much norepi is being sent out so the excess is getting spilled over into the blood stream, the proper amount is getting sent out but the channels (doors) are closed so they cant get in and spill over, or after the message is sent through the door the axon doesn't re-uptake or recycle what didn't get used so it spills over.. Still looking into other medications and their roles in this process.

[Lemons2lemonade]

Different anti anxiety medicaitons can have different effects. I took prozac and it made me worse. I took celexa and it made me feel better. Allegedly, though, effexor is supposed to be the best for patients with dysautonomia, according to my dr. Also, the all the anti anxiety "pams" made me worse.