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Too Much Fear To Help Myself


atomic811
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For several years I have gone doctor to doctor with no one listening. My mother died this past May and 2 days after she died I ended up in the ER having my appendix removed missing the wake and funeral. Between that, past health issues, lack of support system and dismissive doctors I have developed this crippling fear of seeing more doctors. I have become terrified about having a tilt table test to the point that I just won't do one even if it was offered. I react to so many medications its not even funny and have a terrible fear now of drugs from all the past reactions.

I don't know why I am even writing this other than to vent. I know only I can help myself, what scares me is I am not and feel frozen in time. I don't want them to do anything to me that makes me worse and I don't want to feel sicker. Don't get me wrong I have good days, but they are few and far between. I can't be in heat at all and showers ruin my whole day, exercise intolerant, pale face, massive digestive issues, no fainting though well I did faint 3 times in my life so far and a crippling fear of having my blood taken.

So now its like I have this problem and bad anxiety at the same time. So of course to the doctors its all "just anxiety".

Sorry to be a debbie downer..just in a bad space tonight.

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Atomic, I'm so so sorry to hear of your mother's passing. It sounds like that was a very tough week. Amazing that you are hanging in there. I was raised by someone other than my parent and it was terrible for them to pass away when I was only 19. I know it's got to be tough.

I was dismissed by docs all the time. And I kept going because I knew I was sick. Everytime they told me I just had anxiety, I just had to say...okay, he's not the doctor for me. Although sometimes I got quite upset, so that is easier said than done. I went to Mayo and that's where they finally figured it out. But a good neuro was the key to getting me there and having some kind of clue as to what it was. IT's not an easy condition to diagnose, so hang in there. Anything dysautonomia is hard to diagnose. I had symptoms for years but severely the last five years and it took them four years to figure it out. Also, I react to everything. Even pepto bismol sent me to the ER...also a simple over the counter nose inhaler put me in the Quick Care. :) Yes, I'm a lot of fun. But I have to tell you the tilt table test was not nearly as bad as I thought it was going to be and I didn't have a single reaction to it. And the guys who did the test were pretty funny. I didn't even pass out-which was strange since I passed out the entire car ride there. But anyhow, all the other tests I did for dysautonomia were pretty easy after all the tests I've had in the past five years. I also get anxiety once in awhile when I would see a doc. I really have got into meditation lately and it helps. You can download guided mediation on you tube. IT's worth a try.

YOu hang in there.

Rest rest...tomorrow is another day. :)

Maiysa

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I have been seeing a therapist and it helps so much just to be able to talk to someone who will just sit and listen. A lot of the time I dont even realize that my anxiety and depression are from over doing it. I just do way too much and my body and mind give out. You have to be easy on yourself. I too have a massive phobia to medications but I finally got to the point where I was just so fed up feeling this way that I started trying them. Just always remember that you are not crazy, but you are dealing with a very crazy illness that can make you feel crazy :) Hope you start feeling better soon.

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Thanks Dani, I considered seeing a therapist again, it has just been every time I do they are pushing psych meds on me and unfortunately I can not take benzo drugs at all like xanax, ativan (the whole class) and the three different SSRI drugs I tried made me so ill and of course I was told "hmmm I never heard that before" or "they don't do that". Basically I am treated like its all in my head and that I am just looking for side effects. Then because I now turn down those drugs I am seen as "non-compliant" Maybe I just have not found the right doctors and therapists. This one therapist was telling me how my heart goes up when I stand because I have a phobia of standing which was so dumb. They all seem to think if I just do some breathing exercises it will just stop. I have also heard from main stream docs that I am just "decondisioned" which is not possible because some days standing my heart (though rare) is 96 and then the next day 140+ , sorry for rambling, but yes I am again considering seeing a therapist. :)

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A phobia of standing. Sorry but that is a classic. That doc would too if he felt like we do when we stand LOL.

Mate I know how frustrating POTs and related illnesses can be. And sometimes my adrenaline goes crazy and also most of the meds Ive tried have made me worse than the actual condition (at the time I take them I assume they couldnt get any worse, but funnily enough).

POTS docs are ok with understanding all the strange extra stuff that comes with POTS and Dysautonomia.

Sorry xanax and other meds havent helped you. The few times ive been prescribed them they made me feel quite nice for a while. Didnt help pots but at least I felt more distance from being hardwired to a body that goes all over the place.

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Sorry to hear this. I remember feeling this way most of the time when I was still seeing a traditional

medicine doctors as my primary care physicians. I don't think they realize how damaging it is to tell patients that accepting their

illness is all that can be done. Of course, this is what they were taught tho and what their peers think too.

Dr wahls cured herself of ms by diet and supplements. She has an inspiring video on this.

Fwiw, I still see traditional doctors for my heart, etc and now that I know what they know and don't

know, I can appreciate them more. They're good at what they do.

And they all refer me back to my integrative doctor for anything they aren't familiar with, like probiotics and supplements.

Tc .. D

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I'm sorry you're suffering through all this right now. It is too bad you can't take an SSRI. I know they've helped me quite a bit, but not everyone can deal with those. Have you tried Klonopin to help with the anxiety issues? I used to take Xanax, and that would calm me down...perhaps meditation and yoga? I know meditation can be a big help to some of us.

Do you have supportive friends and family? People you can rely on? I think the suggestion of seeing a therapist is a good one. I used to see a psychologist, and am thinking of going back. I also see a psychiatrist every 3 months to help with my anxiety/sleep meds. I've been on them for 10 years, before my diagnosis.

Please let us know how you're doing. Take care, and try to stay upbeat. I'm sending positive energy your way!

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Hi Atomic, I sympathize with you so much! You've gone through so much emotionally and physically that it's natural to feel like you need time to recover. I feel like I've seen every horrible doctor in the world in the past three years and that definitely discourages me from trying new appointments. Also, I can't believe your therapist told you you have a fear of standing!!!! Ugh, the ignorance of some people who are supposed to be professionals is amazing.

Like someone else said, the tilt table test, while not the most pleasant thing I've ever done, was well worth it for me because it finally offered some sort of 'proof' of what was going on with my body (and showed that it's not just 'anxiety' as doctors who don't know the answer love to say).

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Atomic, How are you feeling today? Your quote about Debbie Downer made me laugh. Sometimes I'm Debbie Double Downer myself. Hope you are having a better day.

Maiysa

Yeah I am not depressed about it today. I just needed to vent. I am still to scared to do anything about it right now..but don't feel as bad about it today. It was just one of those nights when you are sitting there and have a moment of clarity of what you go through and the long list of symptoms and think "crap!" haha. Then feel overwhelmed by all the tests you would have to do if you even did get a doc to believe you :)

EDIT: I did have this horrible doc once when I attempted a TTT (if you guys know kyli from youtube) I told her about it. It never took place, well it sort of did. I have a major phobia of needles and the phobic responce sent my heart laying down flying (IV bag). I just couldn't deal and that was that. Labeled "anxiety", but. I have videos of myself sitting with a normal heart rate and then just standing. I don't know how I will ever show these docs what is happening in their office since I have phobic responses to them. Also one flight of stairs brings my heart to 150-ish

Don't get me wrong I do have anxiety issues. I know that. This is just different than that.

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It's possible to have a "poor man's" TTT where you simply sit and then stand with bp and hr readings done by a dr. Also when I had a TTT done they never gave me an IV. I didn't realize that TTT's are conducted with anything administered by IV until after I was diagnosed and read about it on DINET. So I am wondering if you could ask for the test to be done w/o any administration of drugs/IV.

It sounds like what you need most for your care is a specialist. I don't know if you have reviewed this list and it is possible to see any of these doctors:

http://www.dinet.org/physicians.htm

I am so sorry you lost your mother and you have these other challenges as well.

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It's possible to have a "poor man's" TTT where you simply sit and then stand with bp and hr readings done by a dr. Also when I had a TTT done they never gave me an IV. I didn't realize that TTT's are conducted with anything administered by IV until after I was diagnosed and read about it on DINET. So I am wondering if you could ask for the test to be done w/o any administration of drugs/IV.

It sounds like what you need most for your care is a specialist. I don't know if you have reviewed this list and it is possible to see any of these doctors:

http://www.dinet.org/physicians.htm

I am so sorry you lost your mother and you have these other challenges as well.

I have none local to me (checked the list before) and travel is very hard. However in a year I have to move to Pensacola FL and there is one there (also puts me closer to Atlanta and Jacksonville Mayo). However, I am not looking forward to being in FL with the heat. Yes a no drug TTT or a poor mans test doesn't scare me. I know its silly, but I get very nervous and mix nervousness with pots reactions and ..well you know how that feels and goes :)

Thanks

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Hey Atomic, I know things in your life seem really difficult to deal with right now. But at the end of the day I think we both know that at some time you're going to be feeling better. It's just right now in this moment you have this thing, (we call it POTS) that's holding you down. It's ok, and yes you mention you have anxiety as well. I know how bad anxiety can be as I myself have had anxiety disorders all my life as well as panic attacks, but you know even those things can be treated. However, they can't be treated effectively while you're dizzy and in constant pain from the POTS.

So while we're stuck in this moment in time with our POTS, we should try what we can do to get better. You mentioned that you haven't been officially diagnosed yet. For me what I said was that my heart rate lying down was 70 and when I stand up it goes to 120. The doctor then promptly checked my HR lying down and standing up. Then I got referred, and had a TTT without any needles or anything like that. My TTT just involved placing some electrodes on my body (just on the skin not "in" the skin) and tilting the table up. I did feel dizzy, but not really anymore than I ordinarily feel when I stand up.

I would recommend following my approach by just going to a local neurologist. It's essential that you have some type of professional medical guidance on your path to recovery.

Apart from that there are things you can try to do such as increasing your salt intake + compression stockings + exercise. These might ameliorate your symptoms somewhat. I know these things have helped alleviate some of my dizziness.

I'm sorry to hear about your mother and I hope you're able to make peace that you weren't able to earlier. This path you're on is going to require a lot of strength and support, and I'm sure your mom will be there for you in other ways along this trek.

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Well, so glad to hear it's somewhat of a better day. Venting is healthy. Yeah, I wish there was something to help you with the anxiety. I understand what you are saying when you say, yes, you have anxiety but.....it's not the major diagnosis. Hopefully you can find the right doctor real soon. I had doctors say the same thing to me, but a person knows when they are not feeling right and when it's beyond an anxiety issue. Keep trying to get to the bottom of the issue.

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Hi Atomic,

It sounds like you're had your fair share of heartache with the doctors and I am so sorry to hear you lost your mom.

Is it possible to maybe ease back into the healthcare world? Maybe instead of going for a therapist up front, you can find a support group in your area for people with chronic illness. Maybe that could get a better support network going for you (we here of course can help support you but its not the same as having another human sitting next to you.) Once you have some good support around you, then maybe you could find some care that is considered "alternative" such as chiropractic or acupuncture to work on alleviating some of the fear and anxiety. I have used both chiro and acupuncture (not for POTS) with great results over the years and these practioners tend to be less jugdemental that "conventional" docs. They helped me with all kinds of my symptoms.

Those were just some thoughts for getting a start back to health....

I am keeping you in my good thoughts.

Katie

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Sorry about all the trauma and stress in your life.

There is a doctor in Pensacola who himself has POTS and treats patients - if he's having a good day. His last name is Thompson. I'd try to get in to see him. DINET had a DVD a few years ago and he is featured on that video.

Tramadol is given off label to those who don't tolerate the traditional SSRI's. It has seratonin and norepinephrine type properties like the traditional anti depressants. It also helps with pain. It works on the NMDA system which has to do with glutamate pathways. This is one thing that is being looked into in regards to POTS. It will also help with anxiety.
Issie

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So sorry to hear about your mom. I lost my mom when I was 21 so can relate a bit. It's a hard few years to get thru after that. Especially now around the holidays.

Know too that you're not alone in having fears related to seeing docs. I think most everyone here has been dismissed, demeaned, labeled "crazy" or "weird" by docs at some point in time. I know I've shed a lot of tears of frustration after many doctor appointments.

Do you by any chance have a heart rate monitor? Maybe you could do your own poorman's TTT and do a video of it on your cell phone by recording your HR and how it changes over the 10 minute time? Then when you are ready to try seeing another doc maybe you could show them the recording. Just a thought. I did that because my cardio didn't seem to believe that I had the kind of HR changes I described. It's pretty obvious though when you can see the same background and you're obviously standing still but you can see the numbers on the monitor go up and up and up.

Hang in there. It will get better....eventually.

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  • 2 months later...

I can not take benzo drugs at all like xanax, ativan (the whole class) and the three different SSRI drugs I tried made me so ill and of course I was told "hmmm I never heard that before" or "they don't do that". Basically I am treated like its all in my head and that I am just looking for side effects. Then because I now turn down those drugs I am seen as "non-compliant"

This happens to me too. It's quite frustrating. I have been having a hard time even finding vitamins that agree with me! For the longest time I couldnt take vitamin D because it made me feel horrible. I finally found a brand that my body seems OK with, though still if I take too much (and by too much I mean 1/2 of what I should be taking) I have a problem. When I mentioned this to a doctor she looked at me like I had 5 heads and said "thats not possible". Other doctors have thrown up their hands because I refuse to take things they prescribe that I know will be harmful to me.

Your reaction to this situation is perfectly normal. We do seem to have horrible reactions to drugs, and ANYONE who experiences that is going to be very cautious and fearful. I get very frustrated with myself too because I feel like there may be a drug out there to help me,....but I'm going to be too scared to ever try it.

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I can not take benzo drugs at all like xanax, ativan (the whole class) and the three different SSRI drugs I tried made me so ill and of course I was told "hmmm I never heard that before" or "they don't do that". Basically I am treated like its all in my head and that I am just looking for side effects. Then because I now turn down those drugs I am seen as "non-compliant"

This happens to me too. It's quite frustrating. I have been having a hard time even finding vitamins that agree with me! For the longest time I couldnt take vitamin D because it made me feel horrible. I finally found a brand that my body seems OK with, though still if I take too much (and by too much I mean 1/2 of what I should be taking) I have a problem. When I mentioned this to a doctor she looked at me like I had 5 heads and said "thats not possible". Other doctors have thrown up their hands because I refuse to take things they prescribe that I know will be harmful to me.

Your reaction to this situation is perfectly normal. We do seem to have horrible reactions to drugs, and ANYONE who experiences that is going to be very cautious and fearful. I get very frustrated with myself too because I feel like there may be a drug out there to help me,....but I'm going to be too scared to ever try it.

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Rissy,

Me too! I react to vitamins, herbs - everything. I think part of it is the MCAD. It makes us super sensitive. When I was recently experimenting with a few herbs I was getting kicked down as if they were a potent medicine and I was dividing the pills into 1/2's and 1/4's. I asked someone (who's pretty up on these things) about why are we so sensitive and was told that they are studying it right now to try to figure out about why some are so super sensitive to things. They thought it is something to do with the central nervous system. I'm wondering if that could be the case - I know you and I both have both central and obstructive apenea. So, wondering the connection. Why are our systems in overdrive? I've found a vit. D that I'm being able to take 5,000 iu of with no reaction. Write me and I'll tell you which one it is. Also found a B-complex that doesn't make me naseaus. I'm very low in Vitamin D - by the way. I can't get in the sun because of the autoimmune issues with vitiligo. When I'm in the sun, I have to cover up or I'll be burned in 15 minutes. Bummer - doesn't help that we don't tolerate the heat well and then to have to put on long sleeves and long pants doesn't at all help. Hoping for a cooling vest this summer.

Issie

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i think there are a lot of people with pots who are sensitive to meds and eveything else lol That's half the fun/torture of figuring out what works for us. Anything you know doesn't work, cross off the list and make sure to look at for links to other meds that might cause similar reactions. Honestly TILT tables help docs evaluate us but it's not the only thing. I know I'm not doing another one if they give me a med to try to cause a reaction. What's the point?? If tradition meds don't work a lot of people try alternative meds or docs who prescribe off label meds.. Don't give up or get down, we are all here for support because we all need it.

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