Very Frustrated!!!

[mrsdavidson8605]

I was referred to ANOTHER cardiologist by my PCP, who, supposidly was "up" to date on POTS... yeah right... he saw that I have tried all the "typical" POTS medications and began treating me as if it was MY FAULT that they weren't working/and/or I couldn't handle the side effects.... He said I should try Middodrine again. I can't HANDLE it... I had tingling down my neck for hours everytime I took it.. the other medications either didn't work. or the side effects were too much to handle.. He told me I need to "evaluate" whether or not they were really side effects!!! OMG I haven't been treated like i'm crazy by a doc in quite a while, but it stirred up some old emotions!! He put me on Methylphenidate.... anyone tried this? I read in one of Dr. Grubb's chapters from his book (this doc printed the chapter for me) that this drug is kind of like Middodrine... but worse side effects.. great.....Anyway, the doc basically told me he didn't think this medicine was going to work and that there wasn't anything else out there to try.. maybe to try two different ones in combination..

I'm so frustrated and confused. I don't want to go back to taking something that didn't help. My other thought is how do they pick which medications to take in combination.. it seems like a guessing game that i'm NOT willing to play!!! I have to give this stuff a week and see what happens. We want to go see Dr. Grubb, it's just my appointment isn't until October and Ohio is SO far from Kansas... I'll admit, I had a "melt down" today. Haven't had one of those in a while, but when A doc basically doubts everything you tell them, and then says there's not much hope (in so many words), it's hard NOT to break down.....

On a lighter note, I've been able to go swimming! We got a Y membership. It KILLS me the next day, but i've noticed my afternoons are better... hey i'll take any relief i can get at this point! Whenever I start to feel sorry for myself, I remember that others are way worse off than me. We all can count some blessing on this terrible road we are on. Hope everyone is doing well....

[corina]

hi kg,

just to try and help you, i want you to know that when i try a med and cannot tolerate it, it doesn't mean i can't tolerate it forever. i've found out that when i try for the second time, it might happen that my body says, oh well, okay then and i don't have any side effect at all. do NOT ask me why, i've given up on that long time ago. i am just glad that it happened!

one of the best examples of that was when i tried the methylphenidaat (ritalin, short working). i couldn't tolerate it AT ALL, when i tried for the first time, so i decided to stop. i used it to keep me from falling asleep all the time during the day and after a year or so i came to the point where i was sleeping all day (and all night) and didn't want that for a life, so i asked my doc to try again and voila, it worked perfectly without any of the side effects that made me so sick before. for me it felt as if a curtain was pulled up and i felt more alert. i do fall asleep when i forget my dose though

hope this helped,

take care,

corina

[Alizee]

Hey kansasgirl8605,

I am so sorry that you had a breakdown! I wish I could of been there to give ya a hug. But your post made me feel not so alone. I had a breakdown, a couple of weeks ago...only embarrassingly, for the first time ever it took place in front of someone and it happened to be a Doctor, who thought I was mental!

He started asking me a lot of questions he looked through his laptop skimming for answers to DX me in a matter of minutes. He first said maybe my combined medications were the cause of all my problems, I thought maybe that's possible I was hearing him out. Then he wanted to do an examination of me. After that he looks at me funny and then he went back onto his laptop and said maybe it's psychological. He says my symptoms mimic panic attacks. I said I don't have panic attacks I have HPOTS. How could panic attacks cause me to have severe endometriosis, cause my thyroid to die, cause me to be chronically dizzy, cause hypertension, cause my face to turn half red and my toenails blue all in a matter of years when I was in prime condition before this and taught aerobics everyday got an awesome job, got married, bought a house and living a great life? Then he said you're probably depressed and you just don't realize it. I was like what!? He said I have a rare depression that even when you're sleeping it will make your heart race. Then he concluded I must have mass depression!

I could feel the tears well up in my eyes but I was determined to remain unaffected, calmly make my way out of the office never to see him again. Instead I started to get angry, snot and tears started coming down my face, I said "I'm not crazy, I'm sick, but I guess I'm just really depressed because after all I'm crying right now and I must be enjoying this because I want attention!" Then I apologized and said I'm sorry, and this is embarrassing. His receptionist wanted to get me and my Mom out of there so I wouldn't "cause a stir".

Silly thing was, I did feel depressed after going to him!

Anyways a week later I had another Doc appointment, I was preparing for the worst. But the Doctor actually listened to me and told me I wasn't crazy and that many Docs have ego problems and don't like patients that they can't cure. He says it eats at them and a lot of times they get tired of dealing with that patient and hope to pass them to someone else or hope they just go aways. He actually did some tests which were for cortisol levels. So my hope for Doctors went back up. I know you're not suppose to let people control how you feel but it's sometimes. Dealing with a chronic illness makes you feel so alone at many times. It's true there could be worse things we'd have to deal with but when it comes down to it, the cross you or I have to bear doesn't intensify less when you're going through that exact moment.

Anyways about taking new medicine, my personal opinion is don't take it, if your body is reacting to it badly. Might be the wrong thing to do, because corina stuck with it and it worked for her. For me personally, I rather be safe. If you look at the tiny print on the medication sometimes there can be side effects that never go away even after you stop taking the medication. Sometimes it's like the lesser of two evils, like will I be in pain or live with weird tingling sensations but have no pain.

Glad to hear the water exercises are going well, let me know how it effects you in the long run.

Hugs

[ajw4790]

Hi!

Sorry, I wish things were going better! As far as the methylphenidate or Ritalin. I have recently started on it (see my recent post) and am doing okay on a low dose, it isn't doing much as of yet, but I need to have a larger dose, or another later in the day. I am on 5mg. It is not "your fault" the meds don't work, it just means that so far the trials of meds you have tried at that time and in that combo did not work. Which unfortunately means trying to continue to find the right combination. It sounds like a continued search for a good knowledgeble dr. is still needed. At least you have an appmt. to see dr. grubb.

I am glad the Y is working out!

Keep us updated! Hope things are getting better! Have you tried the Ritalin?

[mrsdavidson8605]

Hey kansasgirl8605,

I am so sorry that you had a breakdown! I wish I could of been there to give ya a hug. But your post made me feel not so alone. I had a breakdown, a couple of weeks ago...only embarrassingly, for the first time ever it took place in front of someone and it happened to be a Doctor, who thought I was mental!

He started asking me a lot of questions he looked through his laptop skimming for answers to DX me in a matter of minutes. He first said maybe my combined medications were the cause of all my problems, I thought maybe that's possible I was hearing him out. Then he wanted to do an examination of me. After that he looks at me funny and then he went back onto his laptop and said maybe it's psychological. He says my symptoms mimic panic attacks. I said I don't have panic attacks I have HPOTS. How could panic attacks cause me to have severe endometriosis, cause my thyroid to die, cause me to be chronically dizzy, cause hypertension, cause my face to turn half red and my toenails blue all in a matter of years when I was in prime condition before this and taught aerobics everyday got an awesome job, got married, bought a house and living a great life? Then he said you're probably depressed and you just don't realize it. I was like what!? He said I have a rare depression that even when you're sleeping it will make your heart race. Then he concluded I must have mass depression!

I could feel the tears well up in my eyes but I was determined to remain unaffected, calmly make my way out of the office never to see him again. Instead I started to get angry, snot and tears started coming down my face, I said "I'm not crazy, I'm sick, but I guess I'm just really depressed because after all I'm crying right now and I must be enjoying this because I want attention!" Then I apologized and said I'm sorry, and this is embarrassing. His receptionist wanted to get me and my Mom out of there so I wouldn't "cause a stir".

Silly thing was, I did feel depressed after going to him!

Anyways a week later I had another Doc appointment, I was preparing for the worst. But the Doctor actually listened to me and told me I wasn't crazy and that many Docs have ego problems and don't like patients that they can't cure. He says it eats at them and a lot of times they get tired of dealing with that patient and hope to pass them to someone else or hope they just go aways. He actually did some tests which were for cortisol levels. So my hope for Doctors went back up. I know you're not suppose to let people control how you feel but it's sometimes. Dealing with a chronic illness makes you feel so alone at many times. It's true there could be worse things we'd have to deal with but when it comes down to it, the cross you or I have to bear doesn't intensify less when you're going through that exact moment.

Anyways about taking new medicine, my personal opinion is don't take it, if your body is reacting to it badly. Might be the wrong thing to do, because corina stuck with it and it worked for her. For me personally, I rather be safe. If you look at the tiny print on the medication sometimes there can be side effects that never go away even after you stop taking the medication. Sometimes it's like the lesser of two evils, like will I be in pain or live with weird tingling sensations but have no pain.

Glad to hear the water exercises are going well, let me know how it effects you in the long run.

Hugs

Thank you for the encouragement. When you were talking about your visit, I had SEVERAL flashbacks to doc visits that went the EXACT same way and I had the EXACT same feeling. I have to just keep telling myself I'm NOT CRAZY and there IS something wrong! you were exactly right when you said some doctors have an ego problem. In Dr. Grubb's book, it talks about how docs MUST be humble and willing to throw everything out the window and start over when dealing with POTS (in so many words). Anyway thanks again.

[Tammy]

Alizee- Exact same thing happened to me and continues to happen if I switch doctors. Seriously, what you wrote is verbateam (sp?) to what these arogant doctors have said to me also. I miss my main Electrophysicologist that I had for 5 years.. he was so understanding and tried so hard to find something that would work to help me. Now I have a different one, whose reaction was that I just must not be drinking enough water... I practically float with all the water I drink - but I do pee a lot too, so maybe it just doesn't absorb Thanks for the post... I'm not as alone in all the challenges I go through and I need company in my misery!

- Tammy

[Alizee]

Thank you for the encouragement. When you were talking about your visit, I had SEVERAL flashbacks to doc visits that went the EXACT same way and I had the EXACT same feeling. I have to just keep telling myself I'm NOT CRAZY and there IS something wrong! you were exactly right when you said some doctors have an ego problem. In Dr. Grubb's book, it talks about how docs MUST be humble and willing to throw everything out the window and start over when dealing with POTS (in so many words). Anyway thanks again.

Hey kansasgirl8605,

No problem, I am glad my re account of my recent bad experience helped. I have to check out that book by Dr. Grubb

Hugs to ya

Alizee- Exact same thing happened to me and continues to happen if I switch doctors. Seriously, what you wrote is verbateam (sp?) to what these arogant doctors have said to me also. I miss my main Electrophysicologist that I had for 5 years...he was so understanding and tried so hard to find something that would work to help me. Now I have a different one, whose reaction was that I just must not be drinking enough water... I practically float with all the water I drink - but I do pee a lot too, so maybe it just doesn't absorb Thanks for the post... I'm not as alone in all the challenges I go through and I need company in my misery!

- Tammy

Hey Tammy,

I totally understand, even though I wish we didn't have to suffer it's good to know we're not alone and we're certainly not crazy

Hugs to ya