Desperate

[Haenir]

Hello everyone,

I'm really happy to have found this forum, reading other's stories, experiences and tips really helps. I would like to share my situation and I hope to receive some feedback.

I'm a 21 year old male and have been suffering with POTS for four years. Getting the diagnosis was a nightmare, I went to many different doctors, who all thought I was depressed, anxious or fine. Eventually I found a doctor in Switzerland (I'm from Italy) who diagnosed POTS and has helped me ever since.

POTS in my case is very episodic and all the episodes last about 10 days. During these 10 days I completely break and cannot do ANYTHING. The worst symptom is the brain fog, my thoughts race randomly, continuously and I don't have any control over them, it's so bad that I can barely speak and listening to anything or anyone is out of the question. Then there is anxiety, which manifests as continuous panic, delusion and sometimes hallucinations (different from normal anxiety). I also struggle with shortness of breath, fatigue and my senses are completely messed up. 

The episodes start after random physically or mentally stressing events, even though the last one started from just thinking about a stressful event. When I'm not in an episode I suffer from fatigue and I get dizzy if I stand still for even 5 minutes. I also have social anxiety.

I am currently taking fludrocortisone and midodrine

I have no benefit from salt, high water intake and compression stockings and I feel really bad after drinking alcohol or caffeine.

I'm just now coming out of an episode and I'm pretty desperate because when I'm in one, I just want to disappear. I'm so scared of getting another one.

I would like to know if there's someone who's POTS is similar to mine. I would also really appreciate it if someone would share what meds they take for the brain fog and the anxiety during episodes.

Can anxiety trigger POTS?

I'm sorry if this post is too long and if my English is off.

[Pistol]

Hi - I am sorry that you are having such a bad time. Some of your symptoms sound typical for POTS, some do not. In the way of medication: have you tried SSRI or SNRI? This helps many patients with POTS. It could also help with your anxiety issues.  To answer your question about anxiety triggering POTS: it does not cause POTS but it is a symptom of POTS, mostly because the symptoms of POTS are so scary. And in my case I do get anxious when I have Flare - ups. --- Have you ever asked your Doctor about IV fluids during a bad episode? There are many patients who benefit from them. Also - how were you diagnosed, a Tilt-table study or Vital signs or by symptoms? --- I hope you feel better soon.  

[Haenir]

Hi, thank you very much for your input and your kind words.

I have never tried neither SSRI nor SNRI, I will look into them. I have never asked about IV fluids and he has never suggested i should take them, I will look into this as well.

I was diagnosed with a tilt-table study.

I'm curious about which of my symptoms don't sound typical for pots.

[Lily]

Your English is excellent.  No need to apologize for it.

Did your doctor test the amount of norepinepherine (noradrenaline) in your blood?  That can be done during a tilt table test or not, and it involves one blood draw after lying around quietly for 15 minutes, then another blood sample after standing up for 15 minutes. 

If you make too much norepinepherine you can get symptoms of anxiety.  In this case, your body is anxious, not your mind.  It can be annoying, and can make you mentally anxious because you are worried about why you are physically anxious!

In answer to your newest question, I do not think social anxiety is caused by POTS.  Fatigue, brain fog, dizziness, and anxiety can all be caused by POTS.

[MomtoGiuliana]

Welcome to the forum.

This list of POTS symptoms maybe helpful.

https://www.dinet.org/content/information-resources/pots/pots-symptoms-r96/

Also, here is a comprehensive list of potential treatments for POTS:

https://www.dinet.org/content/information-resources/pots/pots-what-helps-r100/

 

[Haenir]

20 hours ago, Lily said:

Your English is excellent.  No need to apologize for it.

Did your doctor test the amount of norepinepherine (noradrenaline) in your blood?  That can be done during a tilt table test or not, and it involves one blood draw after lying around quietly for 15 minutes, then another blood sample after standing up for 15 minutes. 

If you make too much norepinepherine you can get symptoms of anxiety.  In this case, your body is anxious, not your mind.  It can be annoying, and can make you mentally anxious because you are worried about why you are physically anxious!

In answer to your newest question, I do not think social anxiety is caused by POTS.  Fatigue, brain fog, dizziness, and anxiety can all be caused by POTS.

My doctor did not test the norepinephrine, I will ask him about that as well. Thank you for your answer.

[statesof]

Hi @Haenir I related to some of your symptoms you were describing, though I have both depersonalization disorder as well as POTS.

- "worst symptom is the brain fog, listening to anything or anyone is out of the question." - this was part of my depersonalization disorder, I had terrible brain fog and listening to a few people talking together in the same room was extremely irritating to my brain.

- Then there is anxiety, which manifests as continuous panic, delusion and sometimes hallucinations (different from normal anxiety). - I would have really bad anxiety just the full body feeling, which again was part of the depersonalization disorder, I never had any delusions or hallucinations but with the depersonalization you feel like your in a dream world where everything feels and looks a bit fake, though what your describing sounds quite different.

- I also struggle with fatigue and my senses are completely messed up. - I would have fatigue on and off that would just come and go for hours at a time, almost as though my brain was overworked even though my body was not that tired.

[Jan]

Stress definitely causes my POTS to get worse and can bring on symptoms that you describe.  

I can relate to all your symptoms except maybe hallucinating.

I used to take Lorazapam, a benzodiazepine, when I was experiencing an incident of anxiety.   I found anxiety/panic feeds on itself and if I could take the medication,  I could get a handle on the anxiety before it took control.  Having it available made me feel safe.  It kicks in within 20 minutes so works great when the anxiety starts to take hold.  I found it helped with other symptoms too, like my racing heart, and brain fog. 

I had a bad reaction to SSRI's and they take weeks to kick in so they weren't what I was looking for.

I think it is a miracle we all don't have social anxiety since going out can be so difficult. 

The Mayo clinic told me the way to be able to stand and be upright more, is to retrain your body.   Sit in a recliner rather than lying down.  Walk short distances and try to increase the distant a few steps a day.   A recumbent exercise bike or swimming will help.  Go to a Physical Therapist and get leg strengthening exercises you can do while lying on your back.  

I have gotten much better over time, but it took years.  Try not to lose hope.  The body has an amazing ability to repair and adjust. 

[Haenir]

On 4/16/2018 at 11:12 PM, statesof said:

Hi @Haenir I related to some of your symptoms you were describing, though I have both depersonalization disorder as well as POTS.

- "worst symptom is the brain fog, listening to anything or anyone is out of the question." - this was part of my depersonalization disorder, I had terrible brain fog and listening to a few people talking together in the same room was extremely irritating to my brain.

- Then there is anxiety, which manifests as continuous panic, delusion and sometimes hallucinations (different from normal anxiety). - I would have really bad anxiety just the full body feeling, which again was part of the depersonalization disorder, I never had any delusions or hallucinations but with the depersonalization you feel like your in a dream world where everything feels and looks a bit fake, though what your describing sounds quite different.

- I also struggle with fatigue and my senses are completely messed up. - I would have fatigue on and off that would just come and go for hours at a time, almost as though my brain was overworked even though my body was not that tired.

Hi @statesof, thank you for your reply. Depersonalization describes pretty accurately my mental symptoms. Are you taking any medications? Have you found anything that helps?

[Haenir]

On 4/17/2018 at 8:49 PM, Jan said:

Stress definitely causes my POTS to get worse and can bring on symptoms that you describe.  

I can relate to all your symptoms except maybe hallucinating.

I used to take Lorazapam, a benzodiazepine, when I was experiencing an incident of anxiety.   I found anxiety/panic feeds on itself and if I could take the medication,  I could get a handle on the anxiety before it took control.  Having it available made me feel safe.  It kicks in within 20 minutes so works great when the anxiety starts to take hold.  I found it helped with other symptoms too, like my racing heart, and brain fog. 

I had a bad reaction to SSRI's and they take weeks to kick in so they weren't what I was looking for.

I think it is a miracle we all don't have social anxiety since going out can be so difficult. 

The Mayo clinic told me the way to be able to stand and be upright more, is to retrain your body.   Sit in a recliner rather than lying down.  Walk short distances and try to increase the distant a few steps a day.   A recumbent exercise bike or swimming will help.  Go to a Physical Therapist and get leg strengthening exercises you can do while lying on your back.  

I have gotten much better over time, but it took years.  Try not to lose hope.  The body has an amazing ability to repair and adjust. 

Hi @Jan, thanks for your answer and for your tips. I was wondering how you got your ssri's and anxiety medications prescribed.

[Maggie Franken]

I had similar symptoms from antidepressants. Extreme anxiety. Racing heart. Insomnia. It was torture. I can't believe I've stumbled onto this website. So many suffering patients. Wrote a book about my experiences as a patient. 

[statesof]

Hi @Haenir so for the depersonalization/ derealization and brainfog I found that amitriptyline fixed those almost completely in me, though I don't believe that is the typical case for most people. I started on the lowest dose for a month and then moved up after a month and did that four times, after 5-6 months of this I felt 'almost' normal; I always have some amount of derealization, and the brainfog is there in different ways with my POTS.

[Apple86]

Hi Haenir, 

I've had severe health anxiety all of my life and so when my PoTS symptoms started (aged 31) I had a massive mental health breakdown and couldn't leave the house because I was fearful of everything and everyone, and I was convinced death was close. I was definitely existing in a non-reality - it was beyond scary. Now, six months later, I'm back to more positive mental health due to an SSRI called Citalopram. It doesn't work for everyone and it does take a while to feel the full effects, but if it does work then it's a life changer.  I started noticing the real effects about five weeks after starting it. I started at 10mg and then went up to 20mg after the first two weeks (if I had started on 20mg I would have felt the positive effects sooner). If you can, go and speak to your doctor about it. Sertraline is another SSRI, which works in a similar way to Citalopram. 

I'm currently awaiting my TTT (knowing that I have PoTS) but my anxiety around it is so diminished by the SSRI. Without it, I would probably still be living in terror everyday. 

xx

[zerohours000]

On 6/18/2018 at 1:31 PM, Apple86 said:

Hi Haenir, 

I've had severe health anxiety all of my life and so when my PoTS symptoms started (aged 31) I had a massive mental health breakdown and couldn't leave the house because I was fearful of everything and everyone, and I was convinced death was close. I was definitely existing in a non-reality - it was beyond scary. Now, six months later, I'm back to more positive mental health due to an SSRI called Citalopram. It doesn't work for everyone and it does take a while to feel the full effects, but if it does work then it's a life changer.  I started noticing the real effects about five weeks after starting it. I started at 10mg and then went up to 20mg after the first two weeks (if I had started on 20mg I would have felt the positive effects sooner). If you can, go and speak to your doctor about it. Sertraline is another SSRI, which works in a similar way to Citalopram. 

I'm currently awaiting my TTT (knowing that I have PoTS) but my anxiety around it is so diminished by the SSRI. Without it, I would probably still be living in terror everyday. 

xx

That’s very interesting.  I don’t have POTS or OI but I know I have some autonomic dysfunction; perhaps neuropathy.  No official diagnosis either.  I also have severe health anxiety and most my texts to my mother is about how I have something fatal.  I can’t seem to shake it.

I used to be on Citalopram but had since gotten off all SSRIs and benzos, instead opting for medicinal marijuana.   Since I’ve been ill or whatever, I can’t tolerate the latter.  

I leave my apartment but I sometimes just sleep more than I should because I’m so depressed and just think death is around the corner.  

I might ask my doctor to put me back on and see if there’s a difference.