Jump to content

New And Stressed Out


poppetkazutaka
 Share

Recommended Posts

Well, I've been struggling with a myriad of symptoms from extreme pain to female issues to dizziness to stomach issues to potty issues and etc for almost five and a half years now. It started in May 2004, after the car accident (see siggy) where I never stopped hurting. My general doctor actually said to me, "Sorry, hun, can't help you there" and walked out. I'll never forget that.

So I realized I was basically alone and probably insane, making things up in my head. I lived with it, and fought through it with pain killers and learning to deal with being sick constantly. Perhaps I was just getting old. I was only 22, but hey, I had never been hardy to begin with. I walked a lot, exercised a lot, and maybe I was just worn out. An active healthy person can wear out, right?

I went to a few other doctors eventually when I couldn't keep food down. They ran their stool tests and endoscopy. Their little catches and stuff. Everything came back normal. Once again I thought it had to be me, so I stopped going and learned to live with it. I wasn't losing any weight, which was weird because I still exercised regularly and I wasn't eating much at all. But hey, I was relatively happy with myself. I was 155 and my legs were built from walking. I could deal with my stomach being a bit distended, especially when I ate. I just wouldn't eat when I needed to go out.

I had some things happen, life, changes and getting moved to another state. Got a new job, a less active one. Which was nice because then I had a reason not to push myself to be so tough. I still hurt, but I could deal better behind a headset. The problems began to increase so I went to the doctor yet again, thinking it was a new state and a new doctor. She promised to fix me.

She lied. She was a pusher. She still is, and everytime I go all she wants is to give medicines. Even when I got promoted into a more physically demanding job and gained ten pounds with more activity, her reasoning was constipation, take a laxitive. I found another doctor after I gained a total of twenty-five pounds, most around my stomach, some in my under arms and thighs. This new guy, he's older, quiet, and helpful, for once.

I get a colonoscopy. I'm clean. Which is good considering my Grandmother had died of colon cancer. No polyps means I'm not genetically predisposed to cancer. Hooray, I win one! So then I go to a dietician. I'm thinking I eat too much.

Apparently I human can't live on 500 calories a day. How did I not know this? So she's teaching me to eat. Oops. Stomach kinda forgot to tell me and still does. I actually have to remind myself to feed because my brain no longer sends signals. I have to eat small meals because the signals are so weak for digestion, that anything large I get sick and throw up. But hey, I've lost twenty pounds and am still losing, and have all but given up most sweets and chocolate. That's a win at least.

Now we're at present day. The migraines came back with machine guns. See, they were gone, back when I went to the neurologist in December for the same thing and he started tying everything together. Things had started making sense and this past year was spent realizing there was something wrong with me and it could be handled. It's progressively worsening, but able to be dealt with one day at a time. So right, week before last...

Migranes. Machine guns.

I usually deal with this, but when twelve tyelnol and eight aleve were doing nothing for it after six days, I broke down and called the doctor. Hydrocodone was the only thing to help and he doesn't want to give me that full time. So he suggests, "Have you taken your bp?"

"With the spygometer in my back pocket?" <--Teasing, yes.

"Go to Wal-Mart and check it and call back."

So I do, and wow, it's up about 20, 25 points. My propranolol is raised from 40 twice a day to 80 twice a day now, and so far the headaches are basically gone, but there's this other problem...

Unless I'm laying flat on my back in bed...my blood pressure is raising. I can't walk fast, I can't sit up, and I can't stand for long. I have to break and lay down, not on my front, but on my back. I was laying in the bed drawing on my stomach (er, I was laying on my stomach...oh, you get the idea) and had an attack. Hyperventilate, headache, and flushed in the face...the works. All of that was what happened last year when I originally went to the neurologist after the cardio said I was fine. So...

...any thoughts? And bless you for reading this if you did.

Link to comment
Share on other sites

Hi and welcome!

Have you checked your BP and pulse while lying and standing? It sounded like you had... so your BP goes up regularly on standing? Does your heartrate go up along with the BP?

There must be something about car accidents... I started getting headaches on standing after a bad accident in 1996, but POTS really set in one month after hubby and I were T-boned in 2006.

Sounds like you have some diagnoses. The thing is, have you had much testing to rule out any of the disorders/illnesses that can cause dysautonomia? Usually you have to go to a center who specializes in diagnosing/treating dysautonomia, but if you test positive for some wierd underlying disease then maybe it's treatable. If you diagnosis is some type of dysautonomia, then you're stuck with just treating the symptoms.

I have the high BP on standing too, migraines, flushing, tremors, pain, etc. Also, my arms and legs change colors whenever they're lowered. My feet are often purple, red or blue. Mayo said I have idiopathic small fiber neuropathy which caused my POTS. They think when I had mono in 2006, the virus may have triggered an autoimmune attack against my nerve endings. My treatment is aimed at treating the underlying pooling in order to decrease my hyperadrenergic response.

I apologize if this post is disorganized. Not feeling well today! But I wanted to encourage you to use the Dinet physician's list and try to get to a specialist.

Link to comment
Share on other sites

Welcome to the forum, and you should find ample support from some pretty kind hearted people here.

I've never heard of beta blockers CAUSING POTS. I know they are used to treat some of the symptom

Who actually diagnosed the probable POTS? Was it an autonomic nervous system specialist, cardiologist, electrophysiologist........? It sounds like the neurologist diagnosed you....correct? Try to see an ANS specialist if there's one in your area, or try to find the closest one to get a definate diagnosis.

Take Care of yourself.

Maxine ;0)

Link to comment
Share on other sites

Oh, I didn't mean it if I said the beta blockers caused the POTS (which actually my neuro said I don't quite have, just 'borderline dysfunction that we can't put a label on'), but I was on them to help with the sudden drops in pressure and was told that it might have caused the now constant high blood pressure. I'm currently seeing the only neurologist where I live, and he's been pretty good aside from the fact that he loves particular medications a bit too much and seems to not understand side effects. When I called him about the headaches, he wanted to increase my Topiramate, which I had gone down on from vision loss and other problems. But he didn't seem to think that was a problem.

So that's why I called the general doctor for a second opinion, and he said to take the propranolol at a twice higher dose. Which help the headaches, but they're not completely gone. They're actually a kind of warning system. I just got back from lunch break, and I was out at the craft store. 30 minutes up on my feet and it started, making the chest pain and heart palapitations worse. So I needed to get food and get back to my desk. I'm seeing sparkles as I look at the screen so I'm still coming down from being on my feet I guess.

Have you checked your BP and pulse while lying and standing? It sounded like you had... so your BP goes up regularly on standing? Does your heartrate go up along with the BP?

I don't have a formal way, but I know when it is because I get a certain feeling in my body and I feel like I'm going to throw up. I get very irritable, hot in the face, and cold in my hands and feet. I have a halo feeling in my head, and it starts to hurt with my chest, and I feel like I have to breathe rapidly while my heart starts racing. I don't have access to a tester, so I have to go places like Wal-Mart and the like to test it. But I can tell when it's doing it because of how I feel when it's high and I test high. I guess I need to ask my doctor when I see him in October if I can get a machine.

The thing is, have you had much testing to rule out any of the disorders/illnesses that can cause dysautonomia?

I'm still paying for the one back in December! XD I've had two tilts, a cardio and a Mayo-clinic specialized neurological tilt. A Holter, a stress echo, xrays, MRIs, CTs, and lots of other things I can't remember. I was put through the ringer when it started and all they could say is I was a stout, healthy young woman. I only presented once on the tilt test, but he called it a 'fluke' and it was 'borderline at best'. I've even done urine screens and stool screens and all that fun stuff. XD So...yeah...nothing unfortunately.

My hands stay so cold they're purple. I have to wear layers or jackets or blankets from being cold at work even in Summer, and I feel very hot at home all year long cause they keep it at 80. I crave salt and water constantly, and can't get enough of it. I put so much salt on food it sparkles and yet my sodium levels are normal on blood tests. I always found that hilarious. Uhm...there's a lot of stuff to list but basically if I can make it through the day without having to crash on the floor I call it a success! XD

Link to comment
Share on other sites

Hello and welcome!

I am sorry that you are suffering so much, but I hope that you will find guidance and support on the forum.

It sounds like getting a home blood pressure cuff would be a good idea for you.

This may sound obvious, but with your symptoms, have you had your thyroid checked?

Have you been on any medications other the beta blockers for your symptoms?

Also, that's normal that your sodium blood level doesn't change because you increase the salt in your diet... that means your kidneys are working well, so give yourself a point there :)

~ Broken_Shell :)

Link to comment
Share on other sites

Hello and welcome!

I am sorry that you are suffering so much, but I hope that you will find guidance and support on the forum.

It sounds like getting a home blood pressure cuff would be a good idea for you.

This may sound obvious, but with your symptoms, have you had your thyroid checked?

Have you been on any medications other the beta blockers for your symptoms?

Also, that's normal that your sodium blood level doesn't change because you increase the salt in your diet... that means your kidneys are working well, so give yourself a point there :)

~ Broken_Shell :)

Ooh, cool. I always wondered about that. XD

I have had my thyroid checked several times because my dad had hyperthyroidism. My thyroid is slow but normal, and my metabolism is -7% because of the years where I wasn't eating and gained all that weight from starvation.

The only medication I'm on right now is Topiramate 25mg twice a day (any higher and I have side effects) for mood swings and migraines, Propranolol 80 mg twice a day for the dizzy spells, migraines, and blood pressure fluxuation, and Tri-nessa for the Poly-cystic-ovaries which were giving me very painful periods and huge clots and heavy bleeding. The birth control has helped tremendously, taking away almost all the pain and PMS I was experiencing because I had like...no estrogen going on. XD I've also been on anti-biotics off and on for three months, the latest being 21 day course, and steroids twice within the last month (which actually made me feel wonderful while I was on them) due to an infection that won't pass.

I keep wanting to call my neurologist and move the follow up, up from October, but I keep thinking I should wait for the higher dose of medicine to work. I hate asking for help only to be told there isn't anything to be done so I just don't ask...

Link to comment
Share on other sites

I am only suggesting this because when I didn't have a doctor at the time that wanted to help me I did my own research and if you would put in your search this name (pheochromocytoma) and read about it and see if any of it fits you and your symptoms. I am not saying this is your answer but it is a good place to search... You will need a 24 hour urine catch.. hugs to you, lisa

Link to comment
Share on other sites

I am only suggesting this because when I didn't have a doctor at the time that wanted to help me I did my own research and if you would put in your search this name (pheochromocytoma) and read about it and see if any of it fits you and your symptoms. I am not saying this is your answer but it is a good place to search... You will need a 24 hour urine catch.. hugs to you, lisa

I've done the 24-hr catch with and without the acid in the bottle and both came back normal. I had looked at that before and thought it was close but then the test was normal so...yeah... :) I hate getting close and then being normal. I never thought I would be at a point in life where hearing 'everything came back normal' makes me cry.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...