Seeing a New Doc Tomorrow Morning

Skrape

I know this is a bit off topic from your post but I noticed you are on Fentanyl Patches. I was told about those the other day by someone. How well do they work to control your pain?

Skrape, greetings my friend. I know you have been hoping for relief for some time and I hope this new dr is able to help. As you go in, just like the rest of us, you will be expecting to find compassion, caring and someone who can give you some level of relief from the pain. Don't rule out that it might take several visits with a new Dr before they get to know you and you get to know them.

As per the medical files, if you did not submit a written request, I suggest you return with a dated written request. It could help you later. Any way, I hope and pray the new dr can help. Blessings!

Skrape, I'm trying to remember but when I changed doctors I'm farly sure my new one wrote requesting a copy of my file and I had to co sign it. I agree with the others a written request is the way to go, goodluck, golitho

I will keep the advice on the written request in mind. I have been trying to keep my hopes down and I know I will tell myself all the way there that I expect nothing from this guy except more of the same and that he won't help me but I am still going to be crushed when he doesn't... Fatalism anyone?


Skrape

Skrape,
I find some places are very quick to give you what you request, and others it's a major struggle, even though it shouldn't be.

You will have to sign a release form, though, for them to be sent to you, and maybe pay a charge. The release form I find ridiculous - you have to fill out the release form to release them to yourself! And the fact there can't be some automatic way of doing this is nuts. However your new doctor may have better luck getting the records. You will have to sign a release for him/her, too, but they don't have to pay. Thing is, if a doctor is dragging his feet or his office is just plain disorganized it can be a pain. You eventually may need to threaten to report him to the medical board and/or get an attorney, and see if that moves them along, if your new doctor doesn't get the records in a very timely way. I hate the way doctors (and dentists!!) can hold us hostage, and make life so much more difficult than it already is. I'm going to hope that when you report to us later, your new doctor's office visit went smoothly, and they either get the records soon, or will treat you without them. Thing is, even PCP's I've tried to switch to want the records before they'll make an appointment. It's crazy out there, isn't it?

One thing - some insurance companies actually have the records online now, which is good and bad. You may try going to your insurance company's website and see if that's the case. I read a story from a reporter not too long ago who was investigating the security of medical records and she found out when she just typed in her date of birth and SSN all of her medical records came up - including the last visit to her gynecologist! If they can keep this secure (and who can with hackers) it will eventually be an easy way for US to access our own records quickly and inexpensively (although someone will probably find a way to force us to pay).

Anyway, I'm hoping for the best for you today.

PaLady

Oh, Shanno; I meant to tell you that you should ask for DAW (Dispense As Written, or NO generic in plainspeak!) because I have found a big difference in the name brand VS the generic version of this medication. My insurance didn't cover the name brand so I had to pay almost $500 a month when I was on them. I could have filed for an exemption on the charge but I found out that even if I did, come January, when my insurance rolls over and my deductible ($3,200, ouch!) restarts, I would be paying the full +$800 a month for it and NONE of it would go towards my deductible anyway. I didn't have any reason to believe that my condition would be magically cured between now and then so I opted to just deal w/the generic and not get gouged for the medication. I can think of absolutely no reason why any medication should cost +$800 a month, period.

Well, I just wanted to make sure I gave you that little piece of wisdom after knocking the Fentanyl patches! I would suggest that you give them a try at least. I have heard of people who say that the patches worked for them for over the 72 hour period (completely jealous on that one BTW!). There is no way to tell how you will react to any medication ahead of time. My situation is probably a little different anyway and you shouldn't get "stuck" with them and have no other options. Just do not EVER come in early on a pain medication. EVER. I was naive about pain meds before and I will never make that mistake again, EVER.


Best of Luck,

Skrape

Tina,

Can you please give me a more complete list of your symptoms? If you are not comfortable doing it publicly on here, you can use the email link and send it directly to me. I ask because I have had full body tremors (but most noticeably in my extremities) for over a decade (since at least 18 years old). I have had my blood pressure taken while sitting at rest for over 15 minutes and it was normal. The second I do so much as stand up, both BP and pulse go through the roof; to the point of tachycardia. When I first went to my old doc they did BP and pulse checks four times. One on each arm while sitting (at rest) and another time on both arms after standing. This is when I was able to tell that my heart went crazy w/just the effort of standing up.

I am trying not to get my hopes up w/matching your diagnosis but this diagnosis and your symptoms are so close to mine; they are far closer than anything I have ever researched and, believe me, I have researched for days of my life. It seems I have had to do this myself because I am willing to put in the time when my doctors were not. Unfortunately I am sure you know the drill... I have not proof-read this post as I usually do; I am too excited to get this back up to you. So, I apologize for any obvious spelling/grammar mistakes. ;-)


Please let me know, whether via a reply-post or email; either will work for me!


All the Best!

Skrape

I want to thank you for this information. I have looked up and read about dozens (if not hundreds) of different diseases and conditions looking for a symptom list that closely fits what I have had going on for over a decade. I looked over the website last night (just Googled POTS and hit the first site) and I got goosebumps over the close fit to all of the symptoms. It had to be a 95% fit; when I have never been able to get even over 25% in the past researching other conditions. I do not have these symptoms as severely as some that I read about but they are very, very similar. I am going to print off this POTS info and take it to my next appointment. Here are the main things I can tick through that I remember being a big coincidence:

Starting around 17 years old (1997) I would experience extreme dizziness and nausea at certain times. The first was while bending over looking into the fridge for something to make for dinner. I felt very dizzy and nauseous and made a b-line for the bathroom thinking I would vomit. I made it about 10 feet (halfway) before I found myself on the ground w/my fiancee standing over me asking if I was ok. My head hurt badly and I was still dizzy. I had a goose-egg on my forehead from hitting a bedroom doorknob when I passed out. I experienced a black hole, tunnel out thing while I was on my way to the bathroom. The last thing I remember thinking is "My God, I'm going blind" before I woke up on the floor. I was out for about 2 minutes at the most (I was told) and I quickly recovered and felt better after than I did before.

These blackouts happened to me several more times over the next few years. I could never tie it to a blood sugar issue (sometimes happening when I had recently eaten and sometimes when I hadn't) and I could never get any blood sugar issues pinned down when I went to a doc. It always came out fine, along w/Thyroid and everything else they could think to check. One time this happened to me right after I moved out to Arizona and I had a couple of new friends over for the first time. They came over and I was sitting on the bed (this was an efficiency and was <400sq feet) so I got up to let them sit down. I stood up and leaned against the counter top. These poor guys (only about 16 at the time) had no idea what to do when I passed out cold about 30 seconds after standing up. I woke up with them saying "dude, should we call 911?" and "is he dead?" I think they were way scared! I started laughing right as I came to and it made them think I was even more crazy! I knew what had happened and they didn't and I couldn't help but laugh at their reactions. When I awoke from these tunnel-out-black-outs I sometimes felt almost giddy. They told me I was out cold for approx. 60 to 90 seconds, tops. I hit my head on the counter top on the way down and woke up with quite a headache, again.

This happened to me a few more times while out in AZ and I got to the point that when I met new people I would just explain first thing that I had a blood sugar issue (or something, who knows, right?) and that I would come to shortly after I passed out and for them to not be too scared. For a time, this issue came to define how I would act with people I just met and people that knew me but hadn't had the pleasure of seeing me have my eyes roll up and my whole body go boneless and hearing me bash my head on something on my way down...

These "spells" continued and have persisted until even recently. I came to recognize the shocky, dizzy, heart pounding, nauseous feelings and became good at sitting down whenever they came on me. I usually have anywhere from 5 to 20 seconds warning before my lights go out and I will just sit down wherever I happen to be. There is just something so terrifying about knowing you are going to black out within half a minute and there being so little you can do about it. I have stopped in my tracks and sat down in the middle of stores, the sidewalk, pulled over in my car, at work while on an assembly line, etc. WhereEVER I happen to be, if I sit down quick enough the shocky feeling will eventually pass within a few minutes and I am real shaky (I have tremors to one extent or another all the time but they are WAY worse when these things happen) but I can usually take it easy for a bit and I am relatively ok. When I used to work in a sheet metal factory around huge presses that would shake the ground when they hit the die, I was quite worried about these blackouts. If I happened to fall into a press with one of these things at the wrong moment, I could have easily been killed or be missing arms today. I held up assembly and stamping lines a few times before my foreman insisted I see a doctor (I used to have to be absolutely dying before I would go to the doctor). They ran all the blood work and could find nothing to explain it. By the time I got into the exam room, I felt more or less ok again and all my vitals would be ok.

As recently as a few months ago I had gotten up to get some water from the kitchen and when I sat back down again, I started to feel the usual shocky, heart pounding (I swear it is hammering my ribcage so hard it would crack), graying/black-spattered vision, etc. This most recent episode was worse than usual and I ended up standing back up and was trying to decide whether or not to have my wife call 911. I ended up sitting back down again very soon because I was scared I would pass out and hurt myself again. I sat for about 5 minutes (longer than usual) and it passed. I brought it up to my doctor (old doc, the one I cannot stand) and he seemed to think it was a side effect of the Fentanyl patch I am on, even with the previously explained history of blackouts, etc. It has been about 7 years since I have actually passed out from this. The only reason I have not passed out is because I have become so quick at sitting down when I feel it coming on. Like I said, I do not have a lot of warning so I have to decide quick (especially in the car or potentially dangerous situations) if it is bad enough to sit down or recline and make sure I don't pass out.

There is much, much more about other symptoms that match my issues. Just about half an hour ago, I bent down to look under the couch for a dog toy and I got super-dizzy. All of these issues I have I've always attributed to other things like low blood sugar that they just hadn't been able to "catch" but I am now thinking that all of it, the blackouts, back pain, stomach problems, dizziness, temperature issues (I abhor heat and extreme cold, me and my wife have all-out battle over the temp in the house and car), tremors that get worse with the increased pain, cold and exertion, and on and on and on. I have always viewed the tremors and back pain, blackouts, all of it, multiple problems with various medications, etc. as all being separate things with different causes but I am now thinking it is all due to the same beast. I just thought I was a freaky person who had a lot of issues with a lot of different things. I am not a hypochondriac or anything, I don't look for things to be wrong but there are a LOT of problems I have managed to live my life around. I do not ever even remember to explain them all to the doc because I never think of them as relevant. Maybe all of my problems are my fault because I suck at giving a decent history? Lately it has been hard to get anything coherent across to the doc between all the sobbing like a little girl. My wife is always there to pick up where I cannot continue; there are a lot of subjects that set me off on crying jags that have come up in the past year. I think the Fentanyl makes me super-emotional since I never had these crying/despair issues before I was put on this medicine. Maybe that is all beside the point and a moot issue anyway; not sure.

At any rate, I want to thank you for giving me this avenue to pursue. It looks to be a lot more promising than anything else I have found before. I was in awe as I went through the symptom list for this disease. I didn't quite have time to find out if there was a cure or if it was something that could just be managed. I would assume it is just a manageable condition you have to continue to live with but that certain medications can help with the symptoms.


Again, thank you very much,


Skrape

Glad that you found a doctor who seems to at least listen to you. I dont know your symptoms very well but have you ever been yesyed for Lyme disease? POTS can be from a Lyme infection I have both POTS and Lyme. May be you could have your new doc test you. want you want is called a westernblot Igm and IgG test. As a lyme patient it is hard not to tall everyone you have lyme, but when you have a gaggle of crazy symptoms and no answers its worth a shot!

I take propranolol similar to atenolol, It has helped a lot. It brings my pulse down to 80-90


good luck and I hope you figure this out

I had brought up the point that everywhere I read about it people say that "I had to have mine Rx'ed at every 48 hours because they wore off". My old doc just told me he could not (would not?) prescribe them any other way. This is part of the reason I found a new doc. When I tried the name brand patches and they didn't make me as sick (but cost me over $500 a month) and I told the doc that I couldn't keep that up, his wife/nurse made sure to announce loud enough for everyone in the building to hear that "you can either go with what we will give you or try to tough it out and probably end up in the hospital." I let that one go, this was probably about 4 months ago now.

What finally pushed me over the edge was that the last time I went to call in my refill, they never called me back. I wait until I am on my last patch and if that is going to be "gone" over the weekend, like say on a Sunday, I call on Thursday so that they have a little time to get them done and I still have enough time to make sure I can make the 2 hour round trip to pick it up (I live in the middle of nowhere). Ok, now that I have explained that I am never really early calling in a refill, I can explain a little about what I go through before actually getting to make that call....

Every month I deal w/extreme pain and withdrawal sickness approx. 1/4 to 1/2 the time, the entire month, regardless. This is when I am fortunate enough to keep the stupid things on. MOST of the time, I lose at least 2 patches when they come off and become too dirty to "salvage". I have picked dirt, dog hair (we have a 120lb Golden and I don't know how he loses so much hair and isn't bald, it is crazy), rocks, grass, you name it out of these things. I have had to fish them out of the shower drain, the toilet, pull them off the bed sheets, parking lots, sidewalks, etc. I have used tweezers to pick the debris out of the gel, I have had to just deal with the junk stuck to them, I have had to just throw out the bad ones and go without for the entire 72 hours when I am very unlucky. I hold these patches on with my hands when I am sleeping (my wife tells me I do this in my sleep, etc.) because when it gets bad, I sweat buckets at night and they fall right off. They are particularly hard to get off of cloth when they fall off at night and I end up on top of them in my sleep and do not realize it until I wake up in way more pain than I should be. BUT nothing is quite as bad as trying to peel them off of hot concrete after not catching that it fell off in the car and fell onto the parking lot when I got out. I have cried when most of these patches came off on the pavement and there was nothing left to even tape it on. I cry because I know they wouldn't refill it even a day early and wouldn't believe me if I told them what happened. I have explained this to them every time I see them and they never even bother to answer what I should do when this happens. He just nodded his head and said "uh huh, uh huh" and then runs out of the room as fast he can and makes sure he is in another room w/another patient before I am allowed out of the exam room. I never tried to corner him and force an answer out of him for fear that he will ask me to leave his practice. I do not want to be a "problem patient".

So I go through days and days of hell, even when I can keep them from being destroyed. When they do get too bad to save, sometimes I cannot take it and have to put on another one after two days of being unmedicated. I try not to do this because I will just have to end up being completely unmedicated waiting for the next time I will not be a day early. So I usually just have to "deal w/it" until I can get another refill. Ok, I don't want to do this to death because I could go on for what will seem like forever w/horror story after horror story of times I find my patch has fallen off and is too bad to do anything to save it. Sometimes this can be ok. When they come off in the last 24 hours I just think "well, it doesn't really matter anyway, does it? It wouldn't do anything for me anyway so it might as well go into the toilet or the trash." Somehow I find these times more troubling than the times when it falls off after only having it on for 2 hours and gets stuck in my bike chain (I have been trying to ride because I was told that "well, you won't be doing any damage to your back and exercise will help you.") and gets completely destroyed. When I realize that it makes no difference at all, I am just reminded how futile the whole thing is in the first place and THAT feels even worse than knowing that I have to go another 3 days without any recourse for the pain.

So, two months ago I was refilled short two patches and (at least here in Michigan but I understand it is supposed to be everywhere, a federal law) I had to forfeit the last two patches. You cannot come back and pick up the last two (or however many), you have to have your doc rewrite the Rx when you run out. My doc claimed he had never heard of this before the first time it happened and they made me wait another 3 days without any patches before bothering to call the pharmacy to find out I wasn't lying about it. Anyway, two months ago I was shorted two patches and I told them and they refilled it because they had finally figured out that this does happen when my pharmacy doesn't have enough patches to fill my Rx. All is well right? Well, no it was not. The chick at the doc's office didn't bother to write down when she refilled it and only noticed later. Instead of looking it up she just filled in that she refilled it 6 days early. So when I called for the next refill I was never called back. When I was already in the last 24 hours of my last patch and had dealt with several falling off that month, they tried to ignore my refill request and hoped I would go away because, in their records, I was 6 days early for this refill and they didn't want to have to actually tell me no.

When I called back again at 3:00pm on the last day of my last patch (from another phone number that they didn't recognize so they wouldn't know it was me and couldn't send me to the machine) she told me I was a week early (she didn't even account for the 31st day of the month, so thought I was 7 days instead of 6 days early) and could not have a refill for another 7 days. I took a few deep breaths and told her I had my last refill on the 23rd and not on the first. She told me, actually told me, "well, you didn't get them from us." I almost lost it but patiently explained that the month before, I was shorted two patches and had it refilled 6 days (not 7!) days early. She put me on hold for 20 minutes and came back and said "oh, I think I see what happened. I didn't write down the date the last time and defaulted it to a month (her months are 31 days instead of the 30 days they give you medication for apparently) later instead of 24 days later. Let me see if the doctor left me any prescriptions I can write this on for you." I was put on hold for another 10 minutes and when I got to the point where I was about to decide to drive out there and give them hell for messing with me (problem patient or no, I didn't care) she came back and said "wow, you are so lucky! He left me one page on a prescription pad. You can come and pick it up." After being on hold starting at 3:00pm after they didn't bother to even call me back, I was now in a position to drive out the hour to their office and hope they didn't leave earlier than when they were supposed to. I frantically emailed out to all my clients that "I am sorry but I will be unavailable the rest of the day because I had an unexpected problem." and drove out to their office as fast as I dared. I made it with about 5 minutes to spare and was just able to get it before they left. This just happened to all come about on a Friday and they almost made me go another 3 days past when I (in the really real world) was legitimately out of medication (I want to add that I have NEVER ONCE been early with these people either, for nine months, the entire time I was with them) which I only ever called when this was the case. I was so angry.

I think it was about the time she told me, "well, you didn't get it from us" that I decided I would never deal w/these people again. I made another appointment w/another doc after being told it would take them 2 to 3 weeks to get me a copy of my file because they didn't have time to get around to "extra work". I went to this new guy and sobbed away like a little girl who has skinned her knee most of the time. I was so pissed I did that. I told myself over and over again that I wouldn't.

I know I get off on tangents but my point, I guess, is that I have repeatedly told this guy what this was doing to me and all he ever did was agree over and over and then run away. And yes, that is what it was. He has a bad leg from childhood polio and broke his other knee shortly before I saw him the first time BUT this man ran faster than anyone I have ever seen who has TWO bad legs. He ran away from me every time because he was afraid I WOULD corner him and make him answer me. This, I might add, is something I would never do because of the amount of power he already had over me. I was so afraid to piss him off and have him ask me to leave. Ok, another tangent here, I am making myself angry and making myself hurt and shake more than I should, seeing that I have been told I could stroke out at any time due to the BP and pulse issues I have (I have been trying to not even think about these people).

Please understand that your question is not making me mad. It is the situation, the whole mess over the past year that I am finding it so hard to deal with. Bottom line is, he never cared that what he was making me go through was basically torture. He never cared enough to even give me a straight answer on why he was doing this to me. The best answer I ever got was from his wife (he always makes her answer to me, I guess) when she told me, "the doctor doesn't believe in narcotics, he will not prescribe you narcotics." I wanted to ask her what, exactly, they thought was in these patches they had decided to stick me with but I didn't. I just gave it up as a bad, hopeless job in the first place. If a doctor and a nurse couldn't figure out that FENTANYL is a NARCOTIC, I could never make them be any more intelligent. Ok, Ok, I need to stop now. I apologize for the rant. These people just make my blood boil.


Skrape