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Hi I am a 17 year old boy who has been diagnosed with POTS and high blood pressure. I don’t really rmember but my mom said I started complaining of physical symptoms about 4 years ago where I was saying I couldn’t focus or think on the basketball court. A lot has happened since then mentally( I have severe OCD) and physically. So I was diagnosed with POTS about a year ago. I think the doctors were toying with the idea before then but they were more focused on the mental stuff(have stayed at Hopkins but wasn’t diagnosed there) About four years ago I could run 7 miles for cross country(had some weird clicking sensations in head though ) Now I can barely play basketball for 5 minutes before almost passing out(never passed out before) and sweating a lot. I need help. I have always been complaining about physical symptoms since this all began. I always said from the start that I “could not think”

Symptoms- blood pressure would range from 130/80 range and then drop, or go up to 156/105 and then drop. Pulse sitting would be like 100 and then standing would be 132.

-can’t speak loud or yell or speak for long or get really lightheaded

-flushing in face

-headaches all the time or head pains usually in the back of head(have gotten mri etc.)

-When playing basketball or exercising if I persist I get so dizzy and sweaty I can barely see.I have ringing in ears or lose hearing for a bit

-D?j? vu

-get clicking noises in head usually when I walk or make movements kinda like a tick tick tick in succesion, sometimes spot hurts where it happened

-always have tender scalp or my scalp hurts, I swear it feels like the upper half of my skull isn’t functional or just numb and my scalp is really tender to touch

-memory is horrible cannot visualize things in head or imagine ex. In math I would do problems one day after being instructed on steps and forget how to do it next day. Barely remember childhood looking back is just a blur.

-have to force thoughts almost through my head like memories or thinking, I have to say the words like im talking else I go back to being “subdued”

- It's almost like my brain is asleep, I feel breathing in lots of oxygen helps for a few long seconds

- I feel like I am not getting enough oxygen to my brain or blood because I do not feel “full” like I don’t have enough “oomph”

-I pretty much have edhonia, don’t get happy or angry or react to anything. Have gotten ects and been on almost all antideppressants I want to know how much POTS is doing to me. Meds: Anafranil 175mg, Klonopin 2mg daily, luvox 25mg, pindolol 2.5 mg makes my blood pressure like 126/70 and pulse in the high 80s when sitting and standing. Florinef .02mg

Please I can’t stand this anymore! Are my brain cells just dieing causing all these problems from lack of oxygen like hypoxia? I don’t want to live anymore and the only reason I still am is because I am so subdued and just go back to being sedated, cant work up anger or anything.

My mental diagnosis: OCD, supposedly major deppresive disorder, but we don’t think so any more after 22 ects and all that medicine. And POTs! I have gotten many tests done like mri’s and some blood work. Now I am seeing A Dr. Rowe at Hopkins. Please, what should I do and tell me if these symptoms match up to pots. It was so hard to get a diagnosis. How can I manage this and am I just going to get dumber and dumber? I used to be very bright. Any suggestions would be a godsend for me.

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Michael, I'm so sorry to hear what is happening to you. Some of your symptoms are similar to those of my son, Daniel, who was diagnosed with POTS several years ago. Dan started getting sick when he was 16; he's almost 22 now.

One thing you and Dan have in common is that Dan's illness also started with OCD. That was pretty easy to control with prozac (which he still takes), but then he developed a whole series of other diseases: Crohn's Disease (bad enough to have some of his intestine removed), POTS, other autonomic problems, and some hormonal losses. The doctors think that some type of autoimmune disease lies behind all of this--that Dan's immune system has attacked different parts of his body.

I have read a few articles suggesting that OCD may be related to autonomic dysfunction--that's one reason I find your story similar to my son's. And I know that the symptoms of POTS have been the worst my son has faced. It's a truly miserable disease that leaves patients dizzy, nauseated, and fatigued most of the time. Making things worse, few people understand the disease and doctors lack good treatments.

Based on my son's experience, I can offer this advice: First, try to find a doctor who specializes in autonomic disorders and keeps up to date with recent developments in the area. POTS is an autonomic problem and many doctors don't understand much about that system. Second, you might ask your doctor about mestinon. Some POTS patients have started taking that medicine, and it is the one that seems to have helped my son the most. Salt tablets also help. Third, try to brainstorm with your family about creative approaches you can take to creating the best life possible with your disease. We got Dan a wheelchair to use when he was feeling really sick. He didn't want to use it at first, because he thought it was dorky, but then he realized that it helped him get together with his friends. Then we moved to an apartment right next to a big college campus. That allowed Dan to attend some classes and get together with friends without having to undergo a car drive (very tough for POTS patients) and without having to walk much. When he felt really sick, friends could come see him easily. Although we had a nice suburban house before, it was just too isolating for a young adult with POTS. I don't know your family's situation but you may be able to come up with ways that will make your disease a little easier to bear.

Good luck to you. I have no idea what causes this terrible disease in you, my son, and other patients on this site--but you have all my admiration and prayers as you try to fight back.

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Welcome, Michael! I am the mother of a 17 y/o boy who also has dysautonomia and sees Dr. Rowe at Hopkins. I am so glad he is treating you!!! He has been a godsend for us.

Wow, that's a lot of ECT therapy. It makes me really sad to think that depression MAY never have been an issue for you, maybe a missed dysautonomia DX. Have you had a tilt table test yet? That will confirm your DX. My son had his at Hopkins. It sounds like you have both POTS and NMH (where your BP drops down & some faint.) Lots of us have more than one thing going on at a time- perhaps you had both depression and dysautonomia? Lots of us get depressed BECAUSE of our illness and antidepressants tend to improve dysautonomia. I saw that you are on anafranil now & have tried many others.

Your florinef dose is pretty high. THAT may account for your increase in BP. My son took that dose for years, then suddenly we noticed his BP was too high. We had to back down. Now he only takes 1/2 of a .1mg tablet.

A lot of your symptoms sound very much like POTS and NMH symptoms. Many here have been chattering quite a bit lately about the sore spot on the scalp. You are not alone there.

The fact that you have little affect (emotions) is probably a result of your meds. I feel a lot of passion behind your post. You clearly have strong feelings about all that has happened to you & you should! Your lack of memory is most likely a result of the ECT. That should come back with time. Many of us here also have cognitive issues....so perhaps both for you.

Coincidentally, I see small OCD signs in my son. There may be some connection between that and dysautonomia. I think we've chatted about that here in the past. Do a forum search to see what you can find. As an example, when my son was at his sickest, he would only allow me to have the temp in the car on an even number. I could set it on 68 or 70, but never 69. I chalked it up to the fact that so much of his life was out of control, I let him control what he could. Might be something like that for you too OR you have several things going on at once.

Dr. Rowe is wonderful. I know he will take the time to try to unravel all that is going on with you. Trust in him. I communicate with him by E-mail between appts- as symptoms change, he changes my son's meds as needed. I just show the E-Mail to my son's local doc. I hope you keep a relationship with Dr. Rowe going. He is a huge advocate of teens like you & will fight until you get better.

You are definitely getting closer to figuring this out. Hang in there. We are here for you & will encourage you all that we can.

Hugs-

Julie

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Michael,

I'm so glad you posted because you'll get lots of support and some really good information from this site. There are lots of parents of teenagers with POTS here. I'm wondering if you've ever been in touch with any kids your age who have some form of dysautonomia? There is a site that focuses on kids with dysautonomia - www.dynakids.com. You need to know that you are not alone; there are other kids who will understand what you're going through and might have some good advice about how to cope. We're all pulling for you, Michael!

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Michael -

Hang in there ;) . It will get better. I am a 46 year old mother of 2...my daughter is your age. But I feel your pain! I rememberr thinking that I couldn't bear another day feeling like I did and worse yet...no one understood and I felt like people thought I was a hypochondriac...I was frustrated and scared and felt awful!!

You will learn the best way to manage this illness. Is your family supportive?

I don't know much of OCD as to how it relates to dysautonomia..there are many others who can help you more with that. But I can tell you to hang on and as you learn more and get more help it will get better for you!

Erika

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Michael-

I understand how frustrated you are. It can be really scary not to be able to think. Hold onto the hope that it won't last forever.

That said, meds can have side effects as we are all individuals. My son had terrible concentration issues on even low dose Klonopin. As a suggestion, develop a chronological list of your drugs and see if you can determine whether symptoms worsened when one was started.

Hugs,

Noreen

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Hi Michael -

I have a 19 year old son with POTS. He was diagnosed his Freshman year in High School. He was a very active athlete until he ran cross country in high school and started getting sick when running (nausea and vomiting). It progressed to the point where he was constantly feeling sick and tired. He also has mild OCD and does not show many emotions. He has had headaches, stomach cramps, random sharp pains in his head, low pulse and bp issues, and of course dizziness and fainting. He was seen by a POTS specialist and been on medication. He is in college now and actually feeling much better. His dr said that a lot of teens' symptoms get better once they stop growing. I wish you luck with your appointment and hope you get some answers and relief!

Jane

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Michael, I'm so sorry for what you're going through, but you are not alone! I have the same symptoms, and I have hyperadrenergic POTS. I used to shower and wash my hair every single day WITHOUT FAIL! But since having POTS I can't shower without getting the dizzy, lightheaded, ringing in the ears feeling, and having to lie down on the bathroom floor until the blood comes back into my head. Then I am so weak and tired that I sleep for about 2 days afterwards! And the nausea is awful... I keep telling my friends to shoot me, but they won't cooperate :) I use a shower chair, and it helps a little, but I still get really sick from the shower... my pulse is in the 160-180 range after I shower. POTS is the pits.

Hang in there, though, there is lots of support out there from people who are going through the same things, and we all understand eachother!

Hugs!

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It's really difficult to suffer from chronic illness as a teenager, when you've got so many development issues revolving around you, a lot of social pressure, etc. It's not an easy age, even without medical problems. Hang in there! Even time changes things.

I've heard that many adolescents with POTS develop it as a result of growth imbalances stretching their nerves. So once they stablize at their full growth potential height-wise, they start to recover (spontaneously, i.e. without medicine etc.). There are a bunch of little coping mechanisms you could try in the mean time, and medication and other treatment approaches. Vitamins like antioxidents (vitamin A) help....so pay attention to your nutricion (blueberries, mushrooms, egg whites, cranberries and other antioxidant rich foods helped me recover). Little coping mechanisms include things like crossing your legs (maybe not ideal for a boy), leaning against a wall (instead of standing), breathing into your hands (cupped over your mouth to re-inhale CO2, to slow respiratory rate), and using memory aids (like repeating important information several times in your head). There are so many other little tricks to keep your HR under control, like avoid putting your arms over your head, taking stairs, or standing still (better to walk slowly than to stand still). You should really be careful what type of psychotropic medication you take, because many medications can actually induce POTS or POTS-like symptoms. Since you said you're suffering from OCD, you might have taken a medication that induced your POTS. Stay away from caffiene and other stimulants that could raise your HR and BP. And try to keep your legs in shape, because that will aid venus return (and thereby bloodflow to your brain). Relaxation and low-adrenalin, low-anxiety setting is good too. Be careful about your body temperature...if you notice regulation issues, try to keep yourself in a moderate temperature and don't overheat with exercise in the sun, etc.

You do sound kinda depressed, and what you said about not wanting to live, and just living because you are too sedated to do anything about it is really alarming. You need to tell someone close to you in your support system about these feelings and thoughts. You're really young and have so much potential. Don't give up on you. I'm sure you're gonna find your way through it all.

Good luck!

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Oh yeah, and you're NOT gonna get dumber and dumber. I had severe symptoms the first year (many years ago), and could not even finish a sentence due to cognitive problems. But later, after recovering somewhat, I went back to college and finished my bachelors. After recovering a bit more, I went for my masters, and now I work as a college instructor. But I had to be really patient with the first stage of the illness, where my body and mind were deteriorating, and everything seemed hopeless. I just fought through it, and there is something worth fighting for at the end of the story. The fight itself is worth fighting for, if you know what I mean. It's better than laying down and taking it. So don't give up, as I said, you've got a lot of potential and great days ahead, I'm sure. You'll find many people in this forum who are really successful despite having POTS. It's not a fatal diagnosis, and it doesn't mean your life is over. There's a broad spectrum of severity and so forth. Some people really have a lot to deal with, some forever, others are mild, some recover completely. It's just a really variable illness.

btw, did you have a mono infection when your symptoms started? That was my POTS etiology, although it's really difficult to say the cause for certain. Some people have wiplash accidents that bend their nerves out, others have genetic predisposing factors like EDS or congenital deformations, etc. In any case, sounds like you're with the right doctors, and hopefully they can answer a lot of your questions. I always found this forum to be a really supportive and informative resource. Look through the old posts, articles, etc. You'll find a lot of material to think over and help you.

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