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schamsjj

New And Worried

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Hi everyone I am new and it?s good to finally post. I am a 25 year old male and before this happened I was super healthy. I lifted weights at least 3-4 days a week and loved being active. I?ve been reading this forum for months.

I seem to be slowly getting worse with symptoms changing all the time.

It started out in early 2009 with a few episodes of feeling short of breath and dizzy. Those lasted a few hours. Then in early 2010 I had the flu for a few days. A month after that I had that sudden weakness again and my stomach began to stay bloated. I started losing weight and my muscles constantly started to shake when they were in use. My first visit to the doctor my heart rate would go up to 120 just from talking, and then the testing began to rule out lots of things. The only test that was abnormal was the tilt table test.

I went to Mayo in August 2010 and was diagnosed with POTS and recent mycoplasma infection.

Symptoms:

Weakness

Fatigue

Bloating

Head pressure/Dizziness

Chest pressure

Vertical nail ridges

Red crescents in throat

Low BP (goes from 105/60 to 98/42 just from using 10 lb weight to curl in one arm)

Muscle spasms

Ear ringing (constantly)

Shaky muscles all over body, even when I smile my cheeks twitch very badly

Blood pooling ( veins in hands and feet get very large and hurt and extremities turn red)

Eye Floaters

Skin changes on hands and feet (thin, wrinkly, shiny)

Varicose veins

Horrible dandruff

Palpitations

Warm sensation coming through my ears at times

I am just at a loss and I eat healthy, take vitamins, and take Midodrine to help with this illness. I just feel like I am slowly getting worse. I mean I just feel so weak. When this first started my heart would beat strong and fast. Now it literally feels so weak like it could stop, and doesn?t want to increase its rate when I try to do activities. Like when I just try to sit down and curl a 10 lb weight, my blood pressure drops to 100/42 and my heart rate stays between 55-60. This makes me feel horrible; it feels weak like it needs to be beating faster because I?m so dizzy. But sometimes when I?m standing it still manages to get to around 95, yet it feels weak.

The other day in the Theatre I started sweating, I left the movie and started walking toward the concession stand and felt like I was dying and I fell on the ground. I was blacking out and about to faint and called 911 as there was no one there to help me. My blood pressure was 85/70 when they tried to stand me up. All they said was I was dehydrated because everything looked good once I got to hospital.

I have a regular doctor here but he doesn?t know much about pots and just says ?take your midodrine that Mayo prescribed you and wait it out?. I want to continue to investigate because this just *****. I want him to try harder or maybe look at all of the other tests I could do to see what might be causing this.

Sorry this is soo long, I really don?t feel good. What do any of you make of this? Do you have any suggestions? Anything at all would be appreciated!

Thank you all!

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Welcome. The thing about going to may is they are there for your PCP to call. Mine has. Also I have mastocytisis and a bit of sjogrens which is common. My rip keep everything hydrated eyes, mouth moisturize skin. As an exercise tip keep cardiovascular. For now cut free weights and do the machines. At this point you need to just keep toned and card active. When you aren't as unsteady increase a bit. Be mindful of your level of exercise. M

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Welcome. The thing about going to may is they are there for your PCP to call. Mine has. Also I have mastocytisis and a bit of sjogrens which is common. My rip keep everything hydrated eyes, mouth moisturize skin. As an exercise tip keep cardiovascular. For now cut free weights and do the machines. At this point you need to just keep toned and card active. When you aren't as unsteady increase a bit. Be mindful of your level of exercise. M

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Hello DunkyJ!

So sorry you are having to deal with this! It's very draining on every part of your life...especially in the beginning. I started out like you too. Just a few odd things happened and then it was fine then a year or so later it really flared up after accidentally taking my sons ritatlin in place of my thyroid med! That sent my ANS into overdrive and I have never been the same since! You are steps ahead by having gone to Mayo and being a physically fit person. Keep trying to exercise at a comfortable level for you. My cardio says strengthening the leg muscles will help with the pooling but I'm assuming you were pretty muscular to begin with. Have you read the what to avoid/what helps section of DINET. It is very helpful. Hydration is crucial with this condition. Alot of us drink sports drinks in addition to using alot of salt to help raise BP. I'm assuming Mayo told you that. How long have you been on the midodrine? I have read that alot of people have a hard time with the meds and just choose to live med free. Sensitivity to meds is very common! I hope you get some relief soon...I know all too well how scary this can be and you just so desperately want it to just go away. Keep fighting!

KC

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TrainBoysMom,

Thank you for your help and consideration! This IS soo tough. The Midodrine does help a little when my veins in my hands and feet get really really big. I do drink a lot of water and water with sea salt. I just hate the fact that with all of these symptoms that make me feel like I am dying, I seem crazy to my regular doctors. It just scares me to have ALL of these symptoms that I listed above and one of my doctors thinks most of it is in my head. If it was all in my head then I would be able to run out of the doctors office screaming happily that my body is OK after all and I wouldn't be going through this! How do I compare with other people with the symptoms i'm having?

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If I had a dollar for every time I was told this was anxiety I'd be a couple thousand times richer by now! LOL! I had to have my husband start going with me and he would get really stern and say my wife is not depressed and the only thing she is anxious about it that she feels like she's going to keel over and die you idiot! It wasnt until I saw my new cardio who is very experienced and studied with the infamous Dr. Blair Grubb in Ohio that I was validated. She flat out said this is all physiologically induced not the opposite. You know your body better than anyone and I think the average person knows that it's more than just anxiety. I would tell my docs that it happened in the shower, it happened when I ate, when I went to the bathroom, when I would get cold and the list goes on and on. They just didnt know so it had to be anxiety. And to be fair the them it does present like a bad case of stress or anxiety but if they really listened they may just realize it doesn't sound as typical as they think. Your symptoms are like hundreds of others on here. I have a lot of the same symptoms too. If I exercise I will shake very badly afterward....it's so frustrating! What got me about your list is the cheeks twitching when you smile. I had that going on a few years ago when I took a medication intended to reduce my anxiety. Now I know it wasnt anxiety to start with it was the beginning of my dysatuonomia. I am 2 years into my time and I will say that it has gotten better and I take no medications as of right now. Some info you read says some cases of dysauto resolve on their own over a 2-5 year period. I am hoping that is my case. Did your Mayo doctors say if they knew the underlying cause of your POTS? That is asked alot on here. I am also wanting to know if there is an underlying cause or did I get this from a viral source. Anytime you think of something just post it. They are really good on this site and will answer alot of your questions. It is so comforting to just know that someone else in this world knows exactly what you are going through. Friends and family can be comforting but they really have no idea what it's like 24/7 to feel like we do. When you feel bad just lay down whenever possible. It's annoying I know...you have a life and you're thinking "what the **** POTS do we really have to do this right now?" but it's important to give the body what it's asking for. Also try to avoid getting sick if you can. Viruses make you feel worse....so does the dentist! (I just went so it's fresh in my mind Some people are sensitive to the numbing shots that have epinephrine in them). Ok I have really rambled on...sorry about that! Have the best day you can and take care of yourself ok? :)

KC

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You make me feel so much better! That is great to hear you are getting better already, right now for me it seems no end in sight with symptoms changing all the time. When I have friends over I get so fatigued just from socializing. I start getting shaky, dizzy, and weak! Yes, my first symptoms were eye twitching and then other muscles started twitching. When I got the flu it seemed to get worse from then on. It started with bloating and then the numbness and tingling. All of my other symptoms came after this. The doctor at Mayo suggested it may be post infectious which I think was either from the flu or my mycoplasma infection they checked for.

Did you have and infection prior or know what may have caused yours? And how much better do you feel now? Did it get better gradually? Sorry I've got so many questions!

Have a good day!

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So far the thought is that I have the post viral type but I really don't know for sure. Somedays I am like I dont care why I have it I just want it to go away but it is important I guess to look at other health reasons that you may have it. I would say the first 6 months were the hardest and it got slowly better from there. I have been seeing a MD here that is also very into naturpathic medicine. When I first saw her she tested all of my hormones. I came back with severely low adrenal hormones. I started taking a supplement she gave me called Cytozyme AD that has natural adrenal extracts in it and I thought it helped alot. I am beginning to suspect that this disorder causes alot of your bodys natural functions not to work very effectively. Were you tested for thyroid issues? Another thing you might be able to get your doctor to try out on you is IV therapy. This is where you go in and get a bag of saline put in you via the drip method like if you were having surgery or something. Some say it's wonderful and they feel so much better for several days afterward. It's worth a shot if you can get your doctor to agree to try it! :)

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Guest tearose

Hello and welcome!

You are on the right path to figuring things out because you are asking questions and searching for answers.

You may never understand the "original cause" of your ANS dysfunction but I hope you do! I suggest you try to find ways to manage the best of life while you continue looking for answers.

best regards,

tearose

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Dunky - I'm sorry to hear of your illness, but I'm glad that you've found the Forum and that you're searching for answers. There are many similarities and much variation among people with dysautonomia - my experience might not be helpful to you, but here is what I do to manage the symptoms we have in common:

Horrible dandruff - I developed this symptom when I was maxing out on rice cakes 10 or so years ago, and it resolved when I cut my carbs.....

Chest discomfort - it feels as though someone has stuck a garden hose in my chest and over-filled my chest cavity. This symptom is eased by rest (laying flat); as an alternative, a one-off 1/4 dose of Lexapro generally relieves it within 24 hours.

Bloating - I'm allergic to maize starch, which is used as a filler in medications and vitamin pills and as a thickener in packaged foods. When I eliminated the maize, my bloating completely disappeared.

Tinnitis - I developed this symptom as a side effect when I was trialled on Lexapro last year - it was hideous. It resolved when I stopped taking the medication on a daily basis.

Fatigue - I avoid anything that aggravates my illness (eg exercise, flying, standing for too long, over-work, lack of rest, big carb meals, food I'm allergic to), I use the things that soothe my illness (eg plenty of sleep, rest - particularly laying flat, low carb diet), I take action to stay cool when the weather is hot and to stay warm when the weather is cold, I treat the symptoms that are treatable (eg infant ibuprofen for night sweats; gentle body work for neck soreness and soreness at the back of my head; ginger and peppermint for nausea; Lexotan as needed for panic disorder), I schedule fluids because I have no thirst, I wear compression stockings, and I have two months of scheduled rest every year. 27 years after my first exacerbation, I'm now less fatigued than I've ever been.

When I'm managing my illness well, most of my symptoms sleep, including high heart rate and irregular beat. This doesn't mean that I get to the point where I can go back to the gym - I get sick very quickly when I do anything that aggravates my illness.

Like others on the Forum I'm trying to source my illness in the hope that treating the underlying cause will make my dysautonomia more managable. An endocrinologist has referred me to a genetic metabolic diseases centre for assessment - she is querying whether my dysautonomia has been caused by a failure in my carbohydrate metabolism (irrespective of all other factors, I'm only functional as long as I avoid all exercise and keep my carbs really low).

Finally, I understand that you are eating a healthy diet and taking vitamin pills - there was a time when I was being killed off by my healthy diet because I didn't tolerate the carbs in it, and by the vitamin pills because they were filled with maize starch. A lot of us have allergies and carb intolerance (mostly resulting in low blood sugar) - these may be worth checking out. It also might be worth considering whether any of your symptoms are side-effects of the medication you're taking.

Good luck and best wishes

Dianne

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Hey Dunky, you have my sympathy. I'm a 28 yr old male, and I have almost exactly the same symptoms as you (my blood pressure is rather high though), so I totally understand how you're feeling. It ***** to be in the prime of your life and have everything ruined by this disorder.

I started having problems around 6 months ago, and I've been having the same heart issue as you recently: weak beats and a slow rate that won't go up. It's lead to almost passing out a couple times and I'm scared it's just going to sort of quit. 5 months ago I could see it beating out of my chest all the time though, which can't have been good either. Anyway, I know how terrified you must be, cause I'm terrified too. As hard as it is, I've been finding it helps to try not to think about it so much. I'm trying to just come to terms with my mortality and let go. I'm not sure if you're religious, but I know God has given me strength that I didn't have alone.

I've been taking CoQ10, which seems to help me (though others have had mixed results), as well as benfotiamine, which also seems to help.

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Hi Dunky,

I have hyperadrenergic POTs, which it sounds like you have the dysautonomic POTs, but I did want to comment on the low pulse. Last year I started asking about a low pulse that didn't want to go up and made feel terrible. At the time nobody else had experienced this on the forum. I lowered my clonidine and that brought my pulse up a little(mine was as low as yours hanging in the 50-80s). I also started walking a little bit, but made sure I had someone around. My body eventually adjusted to the lower pulse. Not overnight, it took a few months, but the lightheadedness did get better. My pulse still stays really low except when I exercise heavily or I am really having a POTs flare. Maybe you can talk to your dr about lowering your dose of midodrine.

Good luck and I hope you feel better soon.

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