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I'm terrified (sorry so long)


purplefocus
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Hi everybody. I know that I have had worries and concerns but never like this. For about a week now I have had severe cramps in my legs upper and lower that feel like charlie horses. They don't go away when you do the usual things. They last for about 15 to 20 minutes and it is excrutiating. I am one of the POTS people that passes out often and I usual have an idea when it might be happening. Well two nites ago I was sitting in my usual chair and I passed out when I woke up my husband was telling me to get dressed because he was taking me to the ER. I asked him why and he said the while I was passed out I was violently shaking all over for about 7 minutes. My oldest son also witness this. I freaked out when they told me. I then tried to get up to get dressed and my right leg was dead. It would not hold my weight at all. I went on the the ER and I was a mess emotionally. I was very scared with all this new stuff. Of course the first thing they say is do you have an anxiety problem. I just wanted to scream. I kept begging my husband to just take me home. When I first got there my blood pressure was 52/38. They made no reference to this. They checked it again and it had went up to 64/40. They asked me if I had heart problems. I tried to tell them about the dysautonomia. It was useless. After all the test they took the doctor came back in and told my husband to take me home and make sure that I get plenty of REST. I am terrified and I have a fear that I am dying or something really bad is going on, why did I have a seizure (if that is what happen), what is going on with my leg? I have had to change doctors due to my former doctor leaving his practice. My appointment with my new doctor is not until the end of Novemeber. I called them the next day to see if he could see me sooner but I was told since I was a new patient I would have to wait. Well waiting may simply mean I won't need a doctor. I am very worried and my family is brushing it off as "it's just another symptom of dysautonomia". They have no idea that I feel like my life is soon going to be over. Sorry for the long vent but I new you guys would understand. I am on Welbutrin and I take Klonopin as needed. I have never been a person that was this negative. It just really seems like something is wrong and no one will do anything about it.

Paige

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Hi Paige,

I am sorry that you had such a bad episode and that you were not well treated at the ER. It infuriates me when I read about people like you who have such readable low BP and the medical staff just act as if it is normal or somatic.

I would try to go to a different ER and tell them about the seizure or tremors and ask to be tested.

Also I would not take the risk to drive. I don't know if you were still permitted to drive but for the moment it would much safer to put it on hold.

I know the feeling of impeding death. I just want to reassure you that I think you will live even if I understand how scared and powerless you feel.

I will be thinking of you.

Ernie

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paige,

that IS definitely scary. i don't know how you wouldn't be concerned.

is there another doctor in the practice to see? it seems to me that you need to be seen.

i don't have any insight for you...sorry...i can't believe your bp was so low and they acted like it was nothing?! it just blows my mind.

please keep checking in with us and let us know how you are doing. i just wanted to let you know i am sending good thoughts your way...

i wish i had more insight...

emily

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Dear Paige, My heart goes out to you. your episode sounds scarey. I bet it felt really scarey. Have you ever had dark urine? What kind of blood work did they do at the ER? Did they do a CK or CPK? THis could be muscular???Maybe not!! My concern for you is a condition called rhabmyolysis, probably not the problem. but you need to be safe. I am going to look it up and post back shortly

Dawn A

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Hi paige here is some information:

What is rhabdomyolysis?

Rhabdomyolysis is a potentially life-threatening muscle disorder in which muscle cells are destroyed and the muscle cell contents are released into the bloodstream. Once in the bloodstream, these byproducts are carried to the kidneys where the body?s filtration system operates to cleanse the blood. The muscle protein or myoglobin released during rhabdomyolysis also becomes entrapped in the kidneys, occluding or clogging the filtering process of the kidneys and potentially leading to kidney or renal failure and other organ system disorders, which can be fatal.

What are the symptoms of rhabdomyolosis?

Symptoms of rhabdomyolysis include unexplained muscle pain or weakness. This may be accompanied by fever, dark urine, fatigue or malaise, nausea and vomiting. The pain may involve specific groups of muscles or may be generalized throughout the body. Most frequently the involved muscle groups are the calves and lower back; however, some patients report no symptoms of muscle injury. In rare cases, the muscle injury is so severe that patients develop kidney or renal failure and other organ failure, which can be fatal.

This can be caused by medications, metabolic problems,, many things. I have read of symptoms that are not listed here such as shaking and low blood pressure. The muscle cramping makes me think that there is something metabolic going on that has affected you muscles.

I hate it when ER Drs do not take us seriously. If the muscle pain gets worse or continues and you know that they have not tested your CK levels...Iwould suggest having this done. High Ck levels are an indicator of muscle breakdown. This problem is often misssed in ER.

Hope you are feeling better soon!

Dawn A

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Dear Paige, Good gravey girl!!! Go to another ER and demand help. You may have had a TIA, a precurser to a stroke. YOU NEED to be checked out. About the pain in your legs, are they puffy, red or warm? possible blood clots? When I was first sick my bp was terrible low and I did form a few small clots that where very painful but they were caught and treated before anything bad could happen. Please be careful and Press for the help you need.

I wish you the best of luck and an end to this problem.

Blackwolf

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Hi Paige

I am angry that you were treat so badly. I am sorry to hear you are going through so much at the moment. All the physical things aside one thing bothers me terrible about your statement. Death should not be feared. Your birthday was chosen even before your parents thought of you. Your death date as well. Death is the begging of life and not the end. My brother died a few months ago. He has no more pain, emotional hurt and he left his wheelchair behind. My point to all of this is that I want you to have inner peace about this topic in your life. It is not in our hands and the more we worry about it the less we can do. Please do yourself a favour and read "Purpose driven Life"

Our bodies are so different, I personally cant keep up with what it is doing. Problems are coming and going all the time. Its crazy. The best decision I made in my life is to accept it all. Sunday I could not walk on my right leg. But today I can ... goodness knows what tomorrow brings. But that it tomorrows problems. I so hope you find inner peace through everything you are going through. Good luck with finding a doctor. I wish I could share mine with you.

I had problems with my legs for about 1 1/2 weeks they were dead. My doctor said it was the Fibrom..... My "shaking" last very long but I have not had one yet passed out. I did have one coming out of an operation. Half awake? I put my head on a block my shaking has to do with my heart. See maybe you can make a similar connection. Thinking of you Paige. :P

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Guest tearose

Dear Paige, give yourself your self-esteem back this moment! You are not crazy and you are not allowed to walk down that path of self doubt anymore! You hear me? Right now, just believe in yourself. What you feel is real and do not look to your family or doctors to validate it right now. Many of us find that our families sometimes have a reaction based on their emotions, whether they realize it or not, say it or not. For example they think"oh, she can't have another complication because how will "I "manage?" or,"but Thanksgiving is next week,this is not good timing". And remember, we all can share horror stories of the doctors who just don't get that this is a physical disorder that can have serious complications. You must eventually and probably will eventually find a good new doctor. When ignorant medical people come across your path, keep moving on.

Now, if you step back and look at that low blood pressure, the loss of consciousness and the pains...you do not have to wait to see this new doctor in two weeks, you can go to another doctor beforehand. Trust what you feel will bring you peace of mind before deciding that you will wait two weeks. You deserve two weeks of peace, not concern, pain or fainting!

with support, tearose

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Paige

I'm very sorry for your scary episode. I know you're feeling fear as we all do when we have new symptoms. I think that many of us have wondered if we are going to die too, so your completely normal in your reaction.

I don't think any of us can explain what happened but just give you thoughts about what possibilities lie out there. Some things are not clear cut.

When you were discharged from the emergency dept what did they write in the discharge instructions about when to follow up? That could be your get into doc early card!

Your visit to the ER was horrible and the very least you should do is write a letter to the department head (usually nurse manager) when you're feeling better. If you can enclose documentation about dysautonomia/POTS/NMS, etc., that would even make for a stronger case and hopefully the manager is one to pass information along. You can also write a letter to the Chief ER Doctor, that way it will definitely get around the group.

Don't fear going back to that same ER either. Hopefully you would have a whole set of different staff members that might treat you the opposite of your last experience.

I work in an ED and some nurses have been open minded about Dysautonomia. Some nurses are skeptical no matter what you have, because they lack the knowledge of other things.

ED staff are use to saving lives from heart attacks, stroke, trauma, etc. They are not familiar with what we have, as many primary care doctors are the same way. We should keep in mind that Emergency Dept Doctor's were educated about saving lives and like many primary doctor's can't know about all illnesses, so they work you up and make sure that you're not dying and then either admit you or send you home to get the proper follow up from a primary care doctor or specialist that can help you.

You should try to always ask for copies of what ever lab work they did, for your personal medical records.

I'm not sure about the rhabdo diagnosis but they would have done a myoglobin and creatinine phosphokinase (CPK). I know we have diagnosed this several times in our department, so they do consider it if you fit the symptoms.

It helps to carry a letter or medical records when going to an emergency room with a rare diagnosis like what we have. The doctor usually takes you very seriously and usually does his own research while you're there, so he can best help you with your problem.

Try to hang in there and know we are all here for you!

Steph

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Paige, how are you feeling today? I am so sorry you are feeling so bad and not feeling that your voice is being heard but hope you will raise it louder and louder until it is heard. Our families some time don't get it, I think, because when we go to an ER we more often than not are sent home. But, you know if something is different than your norm and if you are frightened, which is understandable, then I hope you will pursue every avenue until you are satisfied that you have been thoroughly checked out and hopefully given some answers. Please let us know how you are doing.

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PAIGE,

GET TO A DOCTOR! Go to a walk in clinic if need be but see someone. Try another Er if you have to but go! Or go back to the one you were at and maybe you will get a better staff. You are not crazy and you need to remember that. My docotor always says that sometimes we have to remeber that you can get other things not involved in the dysautonomia. We are here and understand, let us know how you are!

Stacey :-)

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Paige,

I agree with what others have recommended. Go to another ER or doctor. You have very right to be concerned. Unusual symtoms can be very scary. ****, regular ANS symtoms are scary.

I'm really sorry you were not taken seriously in the ER. A BP that low is simply not OK.

BTW, I'm not sure if thatwas a seizure but keep in mind that seizures can be a side effect of Welbutrin. Of course the Klonopin should help prevent the seizure but definitely taking Welbutrin increases risk of seizures.

Take care and keep us posted.

GayleP

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Paige:

I am so very sorry you had to experience such a frightening event, only to be brushed off by the ER staff. I agree with others who have said to SEE a DOCTOR ASAP. Some doctor, any doctor. You deserve answers. Frankly, I'm stunned that any medical professional would attribute such symptoms to "anxiety" - particularly with a BP reading as low as you had. Don't purely anxious patients typically have abnormally HIGH BP readings?!

I also wanted to emphasize what Gail said about the connection between Wellburtrin and seizures. Of course, we're just making assumptions here about what actually happened to you, but if it was a seizure, REGARDLESS OF THE CAUSE, a prudent doc may want to wean you off Wellbutrin ASAP.

I wish you the very best in getting a QUICK resolution to this latest health concern. Please keep us posted, OK.

With care and concern,

RunnerGirl

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I am so sorry for your horrifying experience. A BP that low can be dangerous, being a nurse, we always treat a BP like that. What did they do as far as tests go? Did they test your electrolytes? Sometimes when a person passes out it appears that they are having a seizure but it is just part of the passing out process, HOWEVER, if it lasted 7 minutes, it sure sounds like a seizure to me.

I can relate to the feeling that you are going to die. I have that feeling quite frequently lately, I am having lots of POTS problems too-just wanted you to know that you aren't alone.

I find it hard to believe that they wouldn't treat your condition more seriously. If not the dysautonomia-because of the ignorance-but because of your actual readable symptoms and what your family witnessed. Get to a good Dr, go back to the ER somewhere and DEMAND they keep you and find out what the heck is going on.

You are in my thoughts and prayers, hang in there and PLEASE update us as soon as you can. We will all be concerned until you do...........

Many hugs to you,

Danelle

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Thank you everybody for your concerns. No I haven't been to a doctor yet. The reason is because as most of you know they think we are crazy so I am just waiting to go to the one that my old doctor referred me to. The test they did at the ER was EKG and blood work, not sure exactly what they did as far as the lab work. You all know we just get the run around and I am not up for that. My husband is treating me with kid gloves and not wanting me to do anything as far as physical and I mean nothing. I know he means well. I don't know if I had a seizure or not but whatever happen was different than ever before. My legs are still hurting insanely. As long as I am sitting with them hanging down the pain is tolerable but when I stand they hurt immensely. My left leg is swollen but my right leg is the one that hurts the most. I still have that impending doom feeling. All today I have been "wanting" my mom........she passed away 3 years ago. Do any of ya feel like you are losing your mind and really forgetting things? I'm not talking about brain fog but like you just don't get things anymore? I am so thankful for all ya. You really make me feel so much better. Mighty Mouse thanks for the email.

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Paige, very concerned here. Just a thought, but your experience sounds really epileptic in nature to me (and from what I remember reading, there's a definite connection between dysautonomia and epileptic symptoms.) The swelling could be another issue entirely, and that's a distressing one.

One more thing: I've decided that the very next time an MD or ER blows me off, I'm going to have my attorney write a carefully worded (and relatively impolite) letter to the hospital's Board of Directors - as they're the only ones who really give a hoot in the end - and include comprehensive info on dysautonomia.

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I'm with JLB on this one. The swollen leg may not be related, but in and of itself, should get medical attention. Additionally, any loss of consciousness, combined with body movements, deserves attention. I work witih many students who have seizures--the diagnosis isn't hard to make--just requires an EEG and there are really good meds to treat them.

Additionally, seizures lasting more than 5 minutes require IMMEDIATE medical attention. Long seizures can depress breathing enough to be life threatening. The school I work for has a standing rule, 5 minutes or longer and we are mandated to call an ambulance.

I'm not trying to scare you Paige, I'm just very concerned that you're not getting adequate treatment. Could your husband try calling the doctor on your behalf? Or someone else close to you?

Nina

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Ditto ditto ditto. I have nothing new to say--except that I am also thinking of you--and I have also had a shaking symptom with very low blood pressure that prompted my husband to take me to the ER with a similar reaction by the staff. But, your symptoms are very concerning.

Please let us know how you are.

Katherine

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Paige,

I'm very worried about you and don't have anything more to say than what all the others did. Be careful with yourself, there's just ONE you. About the forgetting things. I'm there too. I'm scheduled for a neuro phycological test in december because my memory is getting really bad. The thing is that there are things that I just don't know (anymore?) in which my husband says he's certain I knew them. What he means is that there are things I new for some years ago (things a learned at school for example) and I don't know, but I also don't know whether I knew it before. My familydoc is very worried about this and called my neuro for doing this test. It makes me very nervous (in fact it makes me think of alzheimer but I don't want to think about that at all!!!). Also my short term memory is getting worse. Well, the things POTS do to you. Hope you're doing a bit better today and as I said before: take very good care of yourself, all the best,

Corina

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Corina

I was terrified that I was getting Alzheimers too and I'm still in my 30's. There were days I couldn't remember peoples names that I've know for over 10 years. I could barely do my job. I can't remember much that I learned in school, so don't feel bad there. My vision blurs out and I sometimes slur my words like a drunk. I have some other visual problems but I won't go into it right now.

I know that all of these symptoms were attributed from a low H & H, low blood pressure, low iron and saturation level and probably a need for extra vitamins too. When your hypovolemic and anemic, you don't have the proper amount of fluid volume and oxygen going to your brain so you certainly can't think appropriately. If you don't have enough iron in the blood then it can't carry the oxygen that you have effectively.

I still tremor like I have Parkinson's.

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