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Really struggling, Especially in Public

Discussion in 'General Treatment' started by Belbyr, Feb 27, 2017.

  1. Belbyr

    Belbyr

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    Hi all. I don't want to go way in to depth with my illness, but one of the things I have struggled with is going into public. I have a mix of POTS and CFS (which I'm sure are the same, ect)

    I struggle with nausea/abdominal pain, also increased heart rate, feeling woozy, get over heated, muscle pain/tension all over, among other things. Problem is, I can get a huge! increase in symptoms in public places like the grocery, or a wedding, or school/church/athletic events.

    It's like I already feel bad, then the thoughts run through my mind like: what if I pass out, what if I puke, ect. Then my symptoms start to shoot up quickly with no control. When I feel worse, the reaction is worse. When I am going through a better phase, my reaction is not as bad but still there. It's almost like having the opposite of claustrophobia. I hate going into big places with lots of people around because I can't potentially 'escape' at a moments notice...

    I've tried CBT with a therapist, a few antidepressants here and there, meditation, ect.

    One of the only meds that helps 'a little' is ativan.

    Any advice?
     
    Mel9 likes this.
  2. Gingergrrl

    Gingergrrl Senior Member

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    I actually don't think they are the same although I agree there is a lot of overlap between the two. I 100% have POTS confirmed on Tilt Table Test and on different cardiac tests like Zio Patch but I no longer believe that CFS is my diagnosis. Am asking b/c you mentioned Ativan but I wasn't sure if you took any medications for the POTS itself (like a Beta Blocker, Midodrine, etc) and if they have been of any help at least for the tachycardia portion?

    ETA: I hit reply before I got to say that I am sorry that you are struggling so much and hope that you find something that brings some relief.
     
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  3. Richard7

    Richard7 Senior Member

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    re anxiety I found this helpful http://forums.phoenixrising.me/inde...nxiety-symptoms-with-three-supplements.18369/

    I use the tumeric, flaxseed oil and nag, plus ALCAR, inositol and grapeseed extract from further down on the list.

    At the time I also downloaded some yoga nidras (a type of guided bodyscan mediation that is more creative/fanciful) and found that they helped.

    These lead to a major decrease in my anxiety. I then got a further decrease when I started taking some probiotics that are thought to be useful (yakult and Life Extension Foundations Mood made up as a yoghurt) and a course of antibiotics (triple therapy) that dealt with a b.hominis infection.

    I have not really got a great handle on POTS yet, but it is much easier to handle without the anxiety.
     
    hellytheelephant likes this.
  4. hellytheelephant

    hellytheelephant Senior Member

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    Hi @Belbyr
    I'm so sorry you are struggling, as many of us are, with POTS and CFS.
    I am at a point where I am realizing there are limits to how much we can control these illnesses,...therefore we need the strongest tools possible for dealing with all we have to live with. I have found talking and journalling helpful.

    Please don't think I am saying 'it's all in your head' because I have POTS and it can be so difficult to live with....but I have found 1-1 counselling really helpful.

    It also helps to have a contingency plan for when the POTS kicked in- always carrying protein to eat, some electrolyte to drink and having rescue remedy. I feel the path of peace lies in knowing that you will probably have to leave early sometimes and being able to do that in a calm and controlled way....and not beating yourself up about it afterwards.

    I have the same thing: I really worry about puking in front of strangers or passing out....but both those things could possibly happen to any healthy person also! Have you passed out in front of people, if so how would you like to handle it differently?

    Hope any of that is of some use, but definately know you are not alone- and who wouldn't be anxious with all we have to deal with?!

    NB: I have just bought a medical alert bracelet ( a sporty velcro number), so at least if I do pass out the medics will know I have POTS.
     
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  5. Belbyr

    Belbyr

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    I have tried clonidine and propanolol. They lower heart rate and BP gets a little lower, but nothing symptomatically improves. I did take a very low dose of midodrine for about 2 months... I think I felt better but wasn't for sure. Pots doctor wanted me off of it because she thought I was hyperadrenergic 'ish'.
     
  6. Belbyr

    Belbyr

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    I went to one guy and he said 'you are for sure sick and need to find an answer. I went to another guy that just listens and we did hypnosis and CBT. I just wasn't making any progress after several months.
     
  7. slysaint

    slysaint Senior Member

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    As you have described it could be in response to being fearful about suddenly feeling really bad and all that entails (which I used to get).
    Or it could be a completely separate problem:
    Agoraphobia is an anxiety disorder characterized by symptoms of anxiety in situations where the person perceives the environment to be unsafe with no easy way to get away.[1] These situations can include open spaces, public transit, shopping malls, or simply being outside the home.[1] Being in these situations may result in a panic attack.[2] The symptoms occur nearly every time the situation is encountered and lasts for more than six months. Those affected will go to great lengths to avoid these situations.[1] In severe cases people may become unable to leave their homes.

    I have known people with this and also have experienced something similar nearly 20 years before I got ME.

    so how you deal with it may depend on which of these it might be.
     
    hellytheelephant likes this.
  8. Belbyr

    Belbyr

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    Now that you mention it, I really think I could have something like that. The odd thing is say for example one day my pain/nausea is a 3 (on a 1-10 scale) Then I seem to do 'okish'. But, if I have a day where I'm more of a 5... then the jump in nausea/dizziness/fear jumps higher and faster.

    I had one instance where I felt good enough to travel to denver for a bachelor party (something I thought I could never do) Had to get on flights, walk through major airports, go to restaurants, ect. 4 months later I go way down hill again, pain is much higher and can't work. I have to see an out of town doctor. I had to fork an extra 5 grand to get on a private flight there and back because I couldn't handle airports/public transportation.
     
  9. hmnr asg

    hmnr asg

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    I have agoraphobia and it used to be very severe. I mean i couldnt leave my house and my friend had to take me grocery shopping.
    I would recommend CBT/SSRI etc but you have tried all of them.
    The one thing that helped me is just white knuckling it. That is it. The treatment for agoraphobia is pretty simple in my case, just go and do it, regardless of the fear.
    Acceptance and commitment therapy is particularly helpful with this sort of thing (it might even be helpful with CFS itself). It basically teaches you how to live and do the things that matter in spite of whatever physical or emotional things you are going through.
    There are many good videos and books on this:
    https://www.amazon.com/ACT-Made-Sim...-4&keywords=Acceptance and commitment therapy


    H
     
    hellytheelephant likes this.
  10. Kati

    Kati Patient in training

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    hi @Belbyr,

    I am a bit confused by everybody's responses, and of course not being certain of exactly what is going on, I will give you some thought assuming you have ME and POTS, which are 2 conditions that can be exacerbated when in public.

    When one goes in public, you need to factor in the effort for a ME patient that it takes to get there. Getting dressed, being upright, walking, fighting gravity, being exposed to light, noise and people walking/running around you. So there is the sensory overload, the POTS issues, the PEM issues.

    Same going to the airport. If you didn't have a wheelchair service, walking in the airport with a bag or 2, making it through security standing in line and again lining up for boarding is all very physically stressful for patuetns with POTS and ME.

    Before deciding all of your symptoms may be related to agoraphobia, I would suggest you do an experiment: next time you go to the grocery store or the mall, make a B-line to the customer service and borrow a motorized scooter, and see how you fare. First time around go during a quiet time. Sitting down instead of standing up makes a huge difference for me. It prevents my from getting PEM from just going to the store.

    If you are sensitive to noise, try how it feels like with earplugs on or noise cancelling headphones. It saves energy.

    The airport issue would be quickly resolved by requesting a wheelchair so you do not have to spend energy walking hundreds of meter just to get to the plane.

    Again I do not know exactly what the problem is, but if you have ME and POTS, consider that all the symptoms you have mentioned may not be due to psychological factors but a manifestation of these 2 diseases and that perhaps you are overstretching your physical capacities simply by being in public.

    Sending best wishes.
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    I definitely do not want to contradict anything said by your docs, but have you tried a cardio-selective BB like Atenolol (for the tachycardia)? My HR without the BB goes into the 160's and 170's on a daily basis from POTS but with the BB, it stays in the normal range.

    Even though I have many other medical problems, my life would literally be unbearable without the BB. I've had varying results from Midodrine (from great to it doing nothing but never anything bad in my case). Am currently back on it and for whatever reason, Midodrine combined with IVIG is the winning combination for me, but I know we are all incredibly different. (None of this would apply to agoraphobia if that is the cause but for POTS that is out of control like mine used to be, it would be crucial to find a med that works). Hope this helps!
     
  12. Belbyr

    Belbyr

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    Have not tried the Atenolol but have heard of it. I typically only go up about 28-40bpm from lying to standing. If I move around a little, then the heart rate drops down some. (I'm assuming from the muscle pump) I have also noticed that if I am standing still, when I squeeze my legs and butt, my heart rate actually falls.

    So somewhere I am pooling blood but maybe not enough to pass out (except the one time on a tilt table)

    I may try elavil again but possibly at a lower dose. I think it might have helped a little the last time I tried it. I just remember hating the groggy feeling on 20mg. I do remember it helping my appetite (but was still nauseated at same time) Maybe try 10mg?
     
  13. Gingergrrl

    Gingergrrl Senior Member

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    It might be worth asking your doctor about if POTS is your diagnosis.

    I have blood pooling as well and my feet turn purple but I have never passed out in my entire life, not even on the TTT. As soon as I was raised on TTT, my HR jumped 48 beats (without the BB). But even then, I did not pass out.

    ETA: Do you have very low blood pressure?

    I have never taken Elavil and have on opinion of it. Best wishes finding something that works.
     
  14. Belbyr

    Belbyr

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    Never really have low BP... sometimes it actually goes up while standing, but nothing crazy.
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    If you don't have low BP, then Midodrine probably is not the right Med to try.
     
  16. Richard7

    Richard7 Senior Member

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    re the anxiety/agoraphobia and POTS my feeling at the time was that I was looking all around for an explanation for my anxiety.

    The anxiety was real, the cause was perhaps the POTS, I know that this sort of anxiety resolves/improves on sitting down or taking salt/potassium (or ocassionally b complex, I do not know which component).

    But when I was in it my sense was that I was scanning my environment and trying to find the source of anxiety. Thinking intelectually that it was POTS but still vicerally being agoraphobic.

    With the approach I mentioned yesterday. Hip says that his 3 supplements tumeric, NAG and flaxseed oil seem to work for about half the people who have corresponded with him. It is cheap and works pretty quickly, but will not help with POTS.

    The yakult was based on a canadian bit of research done on pwcfs/me and anxiety. The improvements were on a scale that focuses on the physical symptoms of anxiety which are pretty much the same as POTS. Some of the people I spoke to about this last year explained that a heightened heart rate and blood rushing to your feet are both POTS and the flight response. So symptom overlap will be expected.

    Anyway the yakult study was done using biolactis powder at fairly high levels, 5g/day for 8 wks which is somewhere between 7.5 and 100 billion cfu. the yakult bottles in OZ do not state what there maximum level is just that they have over 6.5 billion cfu on the expiary date.

    So my approach was to grow it on soy in a yoghurt maker set to 38C and had 1 cup per day. I think I was probably getting at least 25 billion cfu a day this way.

    You can buy the biolactis powder online https://www.mimaki-family-japan.com/item/detail?item_prefix=TF&item_code=007121&item_branch=001 and I came close to doing it but was in a hurry (anxious) and decided to go down the home fermentation route instead.

    According to Ken Lassesen's blog there are a number of genetically identical strains of l casei with diferent identifiers, so you could buy custom probiotics l casei, for example, but would need to take it with some suitable fibre. The biolactis is mostly fibre for the l casei to feed on.

    This is already too long a post so I'll end it, but the thing is that I think that the gut can be a good thing to look at re anxiety and CFS.
     

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