Desperate
Posted , 3 users are following.
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.
I also 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, as reading online I don't really find anyone who's POTS presents itself like 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 a POTS episode?
0 likes, 1 reply
kenaz alex_37729
Posted
Hi Alex, I am so sorry for the experience you are going through. Please remember you are GOING THROUGH and not stuck in a Pots melt down. When you are free, even for a day or two it is helpful to start looking for answers and planning strategies, that will give you some small feeling of control. I am in the Phoenix, AZ area of the US and being in such a large city one would think there would be professionals who would be studying Pots. I have many of the symptoms you do but I am 71 yrs old now. My symptoms started about 1995 and manifested with chronic fatigue, shortness of breath, chest pain, dizzy, vertigo, blackouts, ringing ears, migraines and impaired vision. The depression and anxiety, I think were mostly due to not having a diagnoses. Like you, most people, myself included start to doubt our own mentality wondering if it is all in the mind or is it a real medical malfunction. In 2002 I was diagnosed with End Stage COPD and evaluated for lung transplant which I wouldn't do.My breathing was so bad I couldn't walk the length of the house and needed a power chair to get around. End Stage means I had 2 to 3 years to live. I just kept doing life as best as I could. In 2007 a lady I didn't even know came to me in church and said God told her to pray for me which I agreed to. Within 2 weeks I was out of the power chair and walking. Within 6 weeks I no longer needed oxygen except above 5,000'. I rode my motorcycle till 2015 when common sense dictated the vertigo was so bad at time that is wasn't wise to be on 2 wheels. The vertigo can come at any time without warning. I still have chest pain, dizzy, chronic fatigue, tremors and killer migraines. After all these years I finally had a Tilt Table test that showed I had Autonomic Nervous System Dysfunction which my doctors had been denying all these years. This was caused by traumatic brain injury. The diagnoses was great in the respect I know it is not something mental, it is real. We can't proceed with treatment (if there is any) till we get by blood pressure and heart rate under control. 8 months ago my Pulmanologist said he could find no evidence of COPD although do have severe Asthma.
Alex, I have said all this to try and encourage you, DON"T GIVE IN OR GIVE UP. My life style has changed drastically due to my health but I will fight till the end because surrender is not an option. The computer is a great tool and there are many resources. Look up Mayo Clinic and do your own research so you will have questions to ask your doctors. The one thing I have found; coffee helps my migraines and alcohol is my worst enemy. Anything (alcohol, drugs) change the brain chemistry. I pray for you and all who suffer these new or unknown malady's.