Drug use or abuse and POTS

[kjohnell]

Hi!

I posted this message under a sub-category as well, but I am posting it on the main page so that maybe I get more responses.

My name is Kat and I have just been recently diagnosed with POTS. I am only 20 and had to abruptly drop out of my college classes to treat this horribly debilitating disease. I was wondering if anyone could give some advice on how you live day to day. I am a college student and I had an attack in class and immediately started hyperventilating and causing a scene, so I decided that the only resolution would be for me to drop out of my classes. I had extreme plans for my future and this syndrome is totally putting a dent in my life. My first attack was about 1 1/2 months ago, very spontaneous. I was wondering if anyone on this forum could possibly give some assurance on how long this will last or if it ever goes away. I was thinking since it came on so suddenly that it will alleviate itself in some spontaneous manner as well. Any answers? Also, Ive read that alot of younger men and women (especially women) suddenly undergo symptoms related to POTS and ultimately are diagnosed with POTS. Is the increasing number of younger diagnosed persons with POTS related at all to drug use? Because, I will admit, that before my symptoms I was smoking weed several times a day. When smoking weed started causing arrythmia along with many other panic-like symptoms it became more discomforting rather than pleasurable... so I quit. Would weed or any other drugs trigger this syndrome? B/C even now that I am off of all drug use even alcohol and stimulants such as caffiene, POTS-like symptoms persist. This includes: Light-headedness, sudden vertigo and dizziness, hyperventilation, headaches, numbness and/or tingling, heart palpitations and arrythmia..and so on (you get the idea). Also, symptoms seem to worsen with physical exertion and food intake which I think is common with POTS patients. Its SCARY and I fear that I may never be able to get on with my life. Help? Did I just ruin my life for the simple pleasure of smoking weed? Because it is definately not worth it.

I was also wondering if anyone else gets lock-jaw or TMD (tempurmandipular disorder..I think). I believe it may be stress related, but just curious if any other POTS patients experience this.

Please Respond and Thanks for Listening,

Kat

PS. Good luck to any of those who are suffering from POTS. May every day be a good one.

[Ernie]

Hi Kat,

I can't tell you if you will get your normal life back but I have experience with going to university and fainting.

My disorder is genetic and I have had it since early childhood. I have never smoked and taken drugs and I have always taken good care of myself.

I have been acutely sick the past 3 years with POTS and NCS for. I went from fainting 10x per day in December 2000 to once a week now. I faint in school at least once a month, which I find very hard on my ego, and my body. My latest episode was a week ago, coming in the classroom, 10 minutes before an exam. My teacher knew of my condition so she reassured the other students. The security guard carried me out of the room and I laid for 2 hours before being able to walk. I was not able to do my exam, which I had studied for 3 days. The teacher gave me an extra assignment to make up for the exam. I am actually working on it tonight.

School is very demanding on me because I have brain fog, concentration and memory problems and presyncope all the time. I have to tape all the classes and listen back to them lying on the couch. It must take me x2 than the usual student. All I do is go to school and doctors.

Learning is very important for me and I enjoy studying.

I never know what the next minute will be. Last year I fainted 1 hour before an exam and the security guards called the ambulance and I ended up in the ER with gastro-enteritis. So often, I have to reschedule my exams because of the severe syncopes. But my teachers are very comprehensive, and as long as I have a doctor's note things run relatively smoothly.

I have 3 more weeks of classes, then 3 weeks of exams and I will be graduating with a Bachelor of Psychology.

I am very happy I did it because it thought me a lot of things about human psychology and biology.

I had the help of many people, teachers, family and friends and support group. Often I have thought of quitting (came extremelly close to it), especially when I was writting exams (or when I was fainting in class) because I could not remember what I had studied and sometimes I could not understand the question. But the invigilators, seeing me crying would uplift my spirit, by telling me: "Just write what comes up." "Your almost there." I cried almost during every exam for the first 2 years. I had to write my exam lying down on desk because that was the only way I could remember anything. I am just so glad that I had all that support.

I have my convocation in June and this will be one of the most important day in my life. I just hope I won't cry and faint when I get my degree. My best friend will be allowed to walk with me on the stage and I think that she deserve this recognition.

If you have any questions, I will gladly answer you.

Ernie

[MightyMouse]

It's unlikely that smoking caused POTS.

As for the course of this disorder and getting better--well, that's a tough one to answer. Some people DO get better. Michelle, the site owner, is one of those folks. Recovery is more likely for people like yourself who've had a sudden onset. Recovery is unlikely for people like me who've had symtpoms since very early childhood.

You might want to read over the section on this site regarding what causes POTS

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

Also, you might want to get a free PDF download of NDRF's handbook on dysautonomia.

http://www.ndrf.org/NDRFHandbook.htm

I frequently dislocate, or lock my jaw. In my case, it's probably a result of my having a collagen defect called "Ehlers-Danlos type III." My collagen is too stretchy and allows the joint to move too far and get out of the socket. I've also had many ankle sprains and knee injuries.

Welcome to our site. I hope you find the support an info that you need! Nina

[Merrill]

Kat, I agree with Nina/MM--it's extremely unlikely that recreational drug use would bring this on; it's good that you've discovered what exacerbates your symptoms and to stay clear of those things! (For my part, even a sip of alcohol sends my heart rate through the roof--and it's already near the ceiling! It's easy to just say no to that and any other temptations that make me feel worse instead of better!)

Try not to worry about the pot smoking; I smoked it in college too. I've read a lot of medical research on this, and not once have I read that recreational drug use can bring sudden onset POTS.

To answer another of your questions re: TMJ -- I can make an educated guess that this has nothing to do with the autonomic nervous system. It has everything (or most things, anyway) to do with your equilibration--the way that your bite comes together. Talk to your dentist about equilibration, and if he or she hasn't heard of it, find a better dentist who has--and who can equilibrate you properly. Stress and TMJ go hand in hand sometimes if you're clenching your teeth a lot--especially if you're not in balance--and grinding your teeth in your sleep. Wearing a night guard can help with that; again, talk to your dentist.

A note to Ernie: you are a TRUE champion. I have so much respect for you and all that you've accomplished. I trust that you'll keep posting and sharing the steps of your journey toward graduation. Many of us on these sites will be shedding tears of joy right along with you! Good luck finishing your work--and Kat, I hope you too will somehow find a way to return to your studies when you're feeling better.

[MightyMouse]

Ernie, good for you for keeping with school. Kat, try to hang in there. For me, my undergrad program was one of the hardest periods of my life--emotionally and physically, I was completely tapped out. Do what you can to get through it! We'll help you here any way we can. If you haven't already started the low-tech treatments, get moving on that--make your diet high in salt and fluids, and consider compression stockings, which help bring the bp up. They now make nice ones that look like pantyhose. If you don't have the cash for those, you can buy some regular pantyhose that have support, which help me a little.

I will second what Merrill has to say about seeing a dentist about the tmj. A night guard can really help. I used to have one, but I stopped using it once we realized my dislocations were not from poor jaw position, but from my ligaments being too loose.

Nina

[Ernie]

Merrill and Nina,

Thank you very much for the encouragement. I will keep you posted of my pogress.

Ernie

[denabob]

I've never read anything about pot causing POTS either but with POTS comes a drug sensitivity so it may trigger symptoms. Did you have a virus? If POTS is caused by a virus the chances of remission are higher! Nobody not even Doctors can tell us what causes it so dont beat yourself up about it , it just happens!

Hi Ernie! I think you're my fellow pink pather relative.. am I right? If so then you'll find this forum to be a good support as well as ndrf. These people are a terrific support group and they make you feel very welcome! glad to see you here!

Deanna

[kjohnell]

Hey guys...thanks sooo much for responding back to me. That is very encouraging, the fact that most of you say that weed would not cause POTS. However, I did have a viral infection around my first attack and even up to 1 to 2 weeks ago. My TMJ seems to be going away on its own thank God. I had to literally shove food in my mouth b/c my jaw would not open. I found that soup helped.

Ernie: I have to agree that you are very very brave. Hopefully, one day I can gain your strength and conintue with my studies. Im fearful that I may have to quit my job too. This is because I am having a real hard time sleeping which I think is related to the amount of anxiety that I have upon being diagnosed with this and being overly aware of my symptoms. Keep truckin Ernie and let us know how graduation goes. Your family and loved ones must be very proud.

One quick question to all: I am pretty used to the chest "aches" by now, but yesterday and today I have been having a really sharp pain in my left which is restricting me from breathing in deep and also even from sitting up. I woke up with it this morning. Does anyone else experience this? If so what can I do about it. My dad, a doctor, has told me that motrin will help...and to take 2 tablets 3 times daily. This is a really sharp pain, and it hurts. Its nothing like the bearable aches that I usually get. Help? New symptom..or something to worry about? It usually goes away within five minutes.

Thanks for everyones help and Good Luck,

Kat

[Ernie]

Hi Deanna,

Yah, I am the Pink Panther relative. Thanks for the welcome.

Ernie

[briarrose]

Kat

I think we all experience various pains. I can't take motrin because of my stomach problems. I have had times where I get severe pains in my chest or back and can't breathe. I get them in my arms, neck and jaw (sometimes I think I'm having a heart attack.) I'm not even going to talk about the horrific joint pain. As for what to do, well I think each of us have found individual things to work - in other words what works for one doesn't necessarily work for another person. It will be trial in error for you until you figure out your body. It will also depend on what you can tolerate. I think many of us have a very high thresh hold for pain and tolerate more than the normal person.

When I start having problems I usually take some tylenol, heating pad, Neurontin has been a wonder drug for me and relieves me of everything from joint pain, pain in general and helps my migraines. For those really bad times I have vicodin in the house that I get about once a year and only take it in an emergency, but I'm chemically sensitive so usually 1/2 - 1 tablet is all I need.

However in December I had pain so severe in my back that I couldn't breathe, sleep or hardly move. After about 8 hours I finally went to the emergency room. I was there for 14 hours having tests run. Of course they couldn't explain the pain but they kept me medicated the whole time so I was relieved from my symptoms.

Just listen to your body and be willing to try different things until you can nail it down.

Steph

[justme]

Good points briarrose. It is really hard going into an emergency room with pain. Sometimes they don't want to immediately treat the pain until they try to figure out what the problem is. Sometimes there is a "new" problem, but most of the time they aren't able to find a cause. We finally found a hospital ER that actually listens. That was after several almost horrific visits to a different hospital where the doctors were good but the nurses were horrible. We kept going there cuz we thought we had to with our insurance. It is hard to walk into some place and just say I know I can't be fixed just stop the pain.