More Or Less Constant Feeling Of Being On Edge

[rach73]

Hi,

I have to ask you for some advice as the way I am feeling is driving me crazy.

I am naturally a worrier and I live with anxiety that I can normally control. I would normally know what I am anxious about.I have been through a pretty stressful 6 weeks, my husband was involved in a car crash and we have been dealing with the fall out from that - solicitors, insurance companies, sorting out a new car and dealing with my husbands injuries. Not to mention the police as my husband was hit by a drunk driver in a stolen car.

Things have settled down, hubs is on the mend, new car is sorted etc so why am I feeling like I am in a constant state of panic? Its not a full blown panic attack, I'm not hyperventilating or believe that I am going to die. I just feel constantly on edge. I am shaky and feel restless on occasion my heart is racing when I rest - 140bpm.

I just can't understand what is going on and this state of anxiety is exhausting. Is it anxiety because I don't know what I am anxious about or is it POTS - like too much adrenaline in my system?

If its anxiety I am quite happy to try and work my way through it. If its a reaction to everything thats happened in the last 6 weeks then OK I will wait for it to pass. If its POTS this is a new symptom for me probably triggered by all the stress I have been under.

Also since the accident I have been having at least two nights a week of insomnia. Before the event it was only once or twice a month. Nothing is keeping me awake my body just refuses to go to sleep. I feel tired I go to bed but I don't drop off.

Please let me know if you suffer in the same way,

Rach

[songcanary]

Rach,

I know when my cortisol levels were through the roof, I had terrible insomnia. I still struggle with it, but it's a little better lately. Stress causes cortisol to spike, and that will cause insomnia big time. In my case it was chronic, but I wonder if that is what is going on with you.

I don't think there's a quick fix for it, but it sounds like you have the right attitude, just settle and let it run its course. I started yoga which was very helpful and got serious about my attitudes in general, more relaxed etc. Best wishes from a fellow worrier and I'm very glad your husband is on the mend.

[rach73]

Hi,

thanks for your post. It actually made a lot of sense.

I do feel like I am on steroids - which I'm not. My moods are a bit changeable, I can feel OK one minute and feel a bit down the next - which isn't me - but was me on steroids, I'm just not having the rage I had. The sleep pattern is pretty much the same as when I was on high dose steroids a couple of years ago. So I am wondering if it is cortisol.

I had my cortisol levels checked in May last year and they came in low normal, I had the next test and that came in fine the short sn (can't spell it or pronounce it).

The only way I can describe the feeling is its like when you have had a fright you've got over the initial shock but you are left feeling shaky for a few minutes after wards. Only the few minutes after wards is actually hours for me. Its very bizarre.

Thanks for replying, its nice to know I am not going nuts! LOL

Rach

[firewatcher]

Adrenaline and noradrenaline are "fight or flight" hormones that are stirred up by stress. Noradrenaline is also one of the major hormones that controls "wakefulness." POTS has issues particularly with that hormone (norepinephrine) and excess or heightened response to normal levels. You have probably been "bathing" in it since the accident. With POTS, we just don't calm down like we should, so it is difficult for us to turn it off. Unfortunately, the longer you go, the harder it is to calm down, and so the longer you go...and it is a vicious cycle. If you can do anything to calm and soothe yourself, or try to sleep in for several days, to break the cycle it might help. It took regular doses of propranolol to break it for me.

[DIXZELAND]

I too am a naural worrier. I am always thinking of the "next" flare up. When is it coming, how bad is it going to be, etc. I think I may have OCD. I try to think positive, but it's hard for me to do. I repeatedly take my bp hoping that its not high. I just have to "see" that it is normal so I can quit worrying for a few hours. I understand how you feel.

Dixie

[rach73]

Thank you for your replies.

When I posted that this morning I was so wound up! I tried to take my mind off the way my body was feeling and did a bit of cleaning.

I was so weak after doing the cleaning that I went to bed and slept for 3 hours! I woke up around 1730 GMT and have struggled to stay awake ever since. Its now 8pm and after a valiant fight I give up! I thought I would check to see if I had any replies and then go to sleep!

I seem to either have insomnia or I struggle to stay awake!

All your responses make a lot of sense. I feel like the accident triggered the stress response and now my body is stuck in this vicious cycle. I see my consultant on the 24th of this month so if its not any better I will bring it up then.

Thank you for your replies.

Rach

[yogini]

A lot of things you're describing sound exactly like me - or how I used to be when I first got POTS. I think POTS weakens our defense mechanism to normal anxiety. In my case, it's also tied to my menstrual cycle. I have those periods where I can't sleep, which just makes things worse. After a two week stretch where I didn't sleep, I went and got ambien from a dr. A good night's sleep helps to break the cycle. In the long term, I made some dietary and lifestyle changes, he biggest of which is taking up yoga. These type of symptoms are a lot milder for me now.

[issie]

Adrenaline and noradrenaline are "fight or flight" hormones that are stirred up by stress. Noradrenaline is also one of the major hormones that controls "wakefulness." POTS has issues particularly with that hormone (norepinephrine) and excess or heightened response to normal levels. You have probably been "bathing" in it since the accident. With POTS, we just don't calm down like we should, so it is difficult for us to turn it off. Unfortunately, the longer you go, the harder it is to calm down, and so the longer you go...and it is a vicious cycle. If you can do anything to calm and soothe yourself, or try to sleep in for several days, to break the cycle it might help. It took regular doses of propranolol to break it for me.

I'm hyper POTS too and I have high noriepi. levels. I couldn't take propranlol because it caused rebound hypertension on me. The newest thing I'm trying is Ashwaganda - at night before bed. Dr. OZ had a part on his show and it said it would allow you to turn your mind off to sleep. I've used it a few times and it does seem to make a difference. Haven't used it long enough to draw firm conclusions - but so far so good.

[E246]

hi,

this was one of my first symptoms and sometimes went on for days. also it would,happen and still does, to any stress situation. however like you i have only just been diagnosed and with that has come an understanding that i respond badly to emotional stress and these episodes have decreased.

what tests have you had - in england i don't think they check the causes out as much as in america - the focus seems to be on cure.

i do think this is an early symptom or it was for me and it seems to have passed.

i hope this is reassuring. my son is now getting these adrenaline problems and i worry he is developing pots.

try and do anything that helps you relax.

all the best.

[MontanaKimberly]

Has anyone tried Wellbutrin for this?

[rach73]

Hi,

Thank you so much for your replies. It has been very reassuring that I am not alone feeling like this, although its a horrible symptom to have.

Last night I slept properly for the first time in weeks. Although I am really tired and weak still. I am also very lightheaded today, so I have come up to lie on my bed for a bit. I expect after a few hours I will start to feel better. Just trying to get some fluids down as well.

As I said the anxiety is weird, I am feeling relatively calm today even though Hubs is driving 100 miles today to go to a family lunch. If it was a true anxiety response I should be climbing the walls - I'm not. Whats wound me up is him saying he was struggling to get the car into 5th gear?????? Why should that bother me? I am laughing at myself now. Rationally its a new car - to us and 5th is different in every car, some you have to lift the gear stick up others you don't! (I'm in the UK so different set up than you guys in the USA).

Issie - is the Ashwaganda a herbal type supplement I have never heard of it before?

Emma - the only test I have had is the TTT, no other testing and I'm not on any treatment other than what I do for myself - try and up the salt and drink a lot of fluids. I am going to push for more testing as I think -well I know I have EDS and I probably have ocular myasthenia gravis. I will see my consultant again on the 24th March and push for more testing my belief is that without knowing whats causing it how can we ever treat it?

Yogini - I am on cerazette contraceptive pill which stops my periods, however I stopped them for two months before the TTT. Back on them now but I am having a breakthrough bleed and cramps, so I guess hormones could be playing a part in this flare also.

Montanakimberly - What is wellbutrin - sorry I am having to admit my ignorance here.

Dixieland - worriers of the world unite LOL - its an awful personality trait to have. I think mine is connected to never wanting to get anything wrong and let people down. Its a hard thought pattern to get rid of.I did years of CBT after a breakdown and have a better handle on it now. Thats why when this feeling started I panicked. You guys are the only people I have shared this with. I haven't discussed it with my family as I don't want them ........you guessed it.....to worry LOL!

Firewatcher / Songcanary - thank you for understanding and explaining what is going on in my weird body. It was very reassuring.

Thank you

Rach

[issie]

Issie - is the Ashwaganda a herbal type supplement I have never heard of it before?

Rach

Yes it is an herb. I've about decided, for me, it is too stimulating. It is supposed to work on GABA receptors and have a calming effect. But, everything I've tried that works on that level - does the opposite on me. Sigh! Too bad, it looked like it would be a good thing. But, for some others - it may work like it's supposed to.

[Sallysblooms]

Seratonin gets low with illess. You can get that checked. I did. I take 5HTP adn SAMe. My two integrative MD's tell me what brands and amounts to take with all of my supplements.

[janiedelite]

Unfortunately, when I've gone through periods of severe stress I mostly have to ride it out. It can take weeks or months sometimes to get to my level of normal again. In the meantime, give yourself lots of grace and keep as peaceful and optimistic attitude as possible. I do have some meds that I can take as needed to help with sleep during times like this, which is crucial because getting adequate sleep seems to help my body reset.

Best wishes.

[rach73]

Hi

Thank you everyone for your replies. I've had 3 nights of good sleep, the first time in ages. I am actually feeling a lot calmer and actually discussing things with you made me then discuss it with my family who were great.

I know the anxiety probably hasn't gone and will come back but I feel better able to handle it.

Ive been quite poorly the last few days so I have had to rest as much as possible, basically sitting up even on a recliner or standing was making me feel ill and lightheaded. So I have had to lie down.

I have also just been diagnosed with the skin condition hidradenitis Suppurativa after being fobbed off for years. I moved Dr's surgeries and was diagnosed in 8 days. Its a horrible painful condition but I am lucky for ten years its never moved past stage one.

Just makes me wonder if I am some sort of collector of rare syndromes and diseases? LOL

Thanks again

Rach

[issie]

First off - I'm glad you're feeling better.

I looked up this disorder that you have because I'd never heard of it. I went to widipedia and it has some really good info about it. It says that it can have autoimmune reasons. There are quite a few of us that have been found to have autoimmune issues connected to the POTS. It might be an avenue to pursue. Hope thing will stay in check and it doesn't progress further. It also mentions diet change. I've found that that is making a difference with me in regard to food allergies and sensitivities - they seem to trigger an autoimmune response in me and it makes the POTS worse.

Sorry you have to deal with so many things.

[rach73]

Hi Issie,

I hadn't heard of it either until my GP told me that was what it was. I then spent a couple of hours on the Internet having a look at what everyone had to say about it.

The autoimmune connection made me laugh as I have been told and then untold I have myasthenia gravis since 2007 - an autoimmune disease! When I was on high dose steroids I was actually a lot better than I am now. According to two neurologists I do not have MG - they can only explain my ptosis and double vision as conversion disorder or somatization.So now I stay away from neurologists and don't have a lot of faith or respect for them.

I take mestinon to resolve the ptosis and it works - only works in MG ptosis and no other disease. But hey I am the patient what would I know?

I believe I have ocular MG - so it only affects my eyes. I think my muscle weakness and fatigue are caused by the POTS. I probably also have EDS - super flexible very transparent skin, stretch marks when a skinny kid on the back of my calves due to growth spurts.

At the moment the diagnosis of HS is less than 24 hours old for me so I am just trying to get my head around it and see if I can keep this antibiotic down - me and antibiotics don't get on. As I will need them for around 6 months to try and get into remission - which has happened spontaneously for me before- its important I can literally stomach them!

Thank you so much for taking the time to look up. Due to the nature of the illness and the level of embarrassment I feel I didn't want to go into detail.

Rach

[issie]

Since I'm dealing with autoimmune things too - the one thing I can do is change my diet.

All the info on autoimmune things says to cut out glutten, dairy and sugar. It's not at all easy to do (and I really messed up tonight - and am paying for it). But, it's worth a try and see if it makes a difference.

[rach73]

Thanks Issie.

I know that you are 100% right on the diet front. At the moment I am not willing to make the radical changes needed. Mentally I am just not in the right place to stick to it.

I live for cheese, a hazlnut yogurt a day and at least two slices of bread! I am vegetarian so cutting out those foods makes life a little bit harder.

I will do it just when I am ready to make that commitment. It will probably happen slowly over time, that I will reduce my consumption of these.

I know that you are completely right. I must be annoying the heck out of you!

Rach

[issie]

No, not at all. It's just . . . .unless we make changes. "Nothing changes." The one thing we do have control over is what we eat and if what we are eating is making us worse. Well. . . . I know it's hard. Like I said - I really messed up tonight. One thing staying off of those things does for you. When you mess up and eat them (and you will at times mess up) you realize how much they really do affect you. But, you are right - you have to get your mind around it and it's not easy. One other thing that sue1234 and I have been discussing is the possiblity of being protein deficient and also not digesting what we are eating. The conclusions we came to was that we need more protein and enzymes and possibly probiotics. Just something to think about.

Going to bed now - more later. It's 2am. and haven't been to bed yet. . . have these nights ocassionally - no sleep . . .ugh.

[rach73]

Thanks Issie, I hope you manage to get some sleep xxx

[Noreen]

[quote name=rach73' timestamp='1300174

I have also just been diagnosed with the skin condition hidradenitis Suppurativa after being fobbed off for years. I moved Dr's surgeries and was diagnosed in 8 days. Its a horrible painful condition but I am lucky for ten years its never moved past stage one.

Just makes me wonder if I am some sort of collector of rare syndromes and diseases? LOL

Thanks again

Rach

Hi Rach-

Hidradenitis suppurativa is not uncommon among EDSers. I have had the most success with icthammol ointment.

Here is a link you might find useful -

http://www.hs-support.uni.cc/forum/hidradenitis-suppurativa-support/list-of-remedies-to-try/

[rach73]

Hi Reen

Thank you so much for posting this. Its very kind of you and thank you for sharing that I am not alone with this. As I say I am very lucky I am at stage one with this disease.

I will have to try and find out what the uk equivalent is of this ointment.

I had no idea that people with EDS seem to get it as well. I will post on the EDS forum I am on and see if anyone there has it, maybe they will know what the UK name of the ointment is.

I managed to keep yesterdays antibiotic down but haven't taken todays as I woke up feeling sick. I am waiting for my domperidone to take effect before I chance it.

Thanks again

Rach